The Josh Mott Family Journey

Acts of Kindness Article---American Profiled (written by my mom)

2011-12-29T15:32:00.000-05:00

Acts of Kindness

c/o American Profiled

341 Cool Springs Blvd, Suite 400

Franklin TN 37067

To Whom It May Concern:

In October 2010, life took a tragic turn for my son-in-law, Joshua Mott, his wife (my daughter) Kristin and their young children. While a student at Johnson University in Knoxville TN, Josh unexpectedly suffered a violent grand mal seizure, which led to a diagnosis of grade 4 glioblastoma (brain cancer). Due to the symptoms and the recommended treatment (chemo and radiation), Josh had to give up his schooling and the family (Kristin and their three children) made the decision to move to Pennsylvania to be near family for support through this ordeal. Prior to leaving Johnson University in June 2011, friends and fellow students spear-headed numerous fundraisers to assist with expenses the young family would have due to this diagnosis. T-shirts were created by Abigail Moyer, and Lisa Jones and other students on campus pitched in with help wherever needed.

In July 2011, Joshua underwent surgery at Geisinger Medical Center in Danville PA to remove a tennis ball-sized tumor. Josh continued to battle this cancer and all the challenges it presented, despite setback – swelling of the brain and infection in the tumor cavity which resulted in several more hospitalizations and surgery. In August 2011, his wife Kristin arranged that Joshua would have a graduation ceremony where he received an Associate’s Degree from Johnson University, Knoxville TN and a 1 year Bible Degree from Lancaster Bible College, Lancaster, PA (both degrees he had earned). In December 2011, the Mott family, with doctors’ permission and approval, travelled to Florida so Joshua could take his children (Kosette [5], James [3] and Kassidee [1]) to Disney for family memories they would treasure after he was gone. While there Josh was stricken with paralysis of the right side, excruciating pain, and massive leakage of spinal fluid from the wound in his brain. Josh was hospitalized in critical condition at Halifax Hospital, Daytona Beach on Christmas Eve. He underwent a high risk surgery to drain the tumor cavity. It was determined that Josh would not regain use of his right side.

When his friends and church family at Niemonds Independent Church in Richfield PA heard of his situation, they all rallied around offering prayer and support through whatever ways they could. Associate Pastor Steve Osenga organized a group of men who in two days time (December 23/24) built an extended wheelchair ramp at their home. Friends set up a benevolence account at a local bank to raise funds to help with the massive medical bills from this out-of-state hospitalization and the medically-necessary transport back to PA. Tabitha Goodling blitzed the media (newspapers, radio, tv) to raise awareness of Josh and Kristin’s situation. Steven, Spencer and Sammy Watts (ages 10, 8 and 5), sons of Steve & Kim Watts, sponsored a “Crayon of Hope” where individuals could donate for the Mott family. “Secret Santas” and other friends from the church and community blessed the Mott family with gifts and food and whatever else might be needed. As I write this letter, people are still working on ways to assist the Motts as Josh recuperates from this latest surgery and their lives adjust to these new challenges. So many people, so many acts of kindness… so much gratitude for all of them.

Sincerely,

Linda J. McFadden

Beavertown PA 17813

Other Info:

Johnson University, 7900 Johnson Drive, Knoxville TN 37998

Niemonds Independent Church, Route 35 S, PO Box 187, Richfield PA 17086

717-694-3700

december 2011

2011-12-16T21:05:00.000-05:00

December has kinda been a rough month so far. It started out with an increase in seizures, then there was a Josh's 4th brain surgery....surgery that wasn't supposed to be brain surgery, but when they got in there they saw an opening to Josh's brain and they closed it up, technically that made it brain surgery, the stitches even show up on brain scans. The extra swelling from that brain surgery led to a seizure that sent us to the Emergency Room in an ambulance...the second ride for both of us in an ambulance. Since that day, December 7th, Josh has improved on his use of his arm and his leg and his speech, but he remains "disabled".
Josh has had physical and occupational therapists come out to the house and have shown him many exercises to do daily to increase strength in his hand, arm and foot, leg.
On the 13th Josh had his most recent MRI. It was and is hard to absorb what is on that MRI. Basically there were areas surrounding the cavity where the original tumor was removed from that show up bright white on the MRI. and there is a bright white area that looks like a line that is new. It's disturbing because in october there was nothing that showed up like this on the MRI following his surgery then. So that means that this is probably tumor regrowing.
We go most of our days forgetting what we are told this means. We go to each appointment, we keep seriously busy with all of this Brain Cancer related stuff, but we ignore what it means. So in those moments when it catches up to us, I cannot even describe to someone else what it is like for us. And it's different for me than it is for Josh.
But really, in the here and now, what we are dealing with the most is balancing what is going on with Josh right now. He needs to use a cane or walker to get around, but he hates to be restricted like that, so around the house he tries to walk without them...gives me panick attacks when I see his right leg wobble, or when I hear a noise coming from another room...I have stopped following him around the house. Balancing my caring for him vs. his need for independence...sometimes this is a fine line that's hard to see. I'm proud of him, how strong he is, and I love how much he wants to help me. I know in my mind that it is so hard for him to have to stand aside and allow me to do things that he feels he should be doing, but I cannot truely know what it is like for him.
It's hard to see him go back and forth from fully able to unable...but I am so glad that God keeps making him able.
I have spent several trips in our car just me and Kosette and had opportunities to talk to her about things. The other day she asked me about why people wouldn't believe in Jesus. That was a big conversation, discussion of free will with a 5 year old...hmmm... Well, I talked to Kosette about the "hole" that people feel they have and that they try to fill it up with stuff, and how that stuff might make them happy for a little bit, but that it never lasts, and that the only thing that lasts is Jesus. We talked about how God created us to love Him, to be loved by Him and to praise Him. It's so much fun to sit in the car with Kosette and teach her how to praise God. And it makes such a difference in my day too. One the days when my focus is on God, my days go so much better, my attitude toward everyone and everything is so much brighter. Ok....so I want to end this with a piece of scripture that I have read several times this month...

Psalm 40^[a]

For the director of music. Of David. A psalm.
¹ I waited patiently for the LORD;
he turned to me and heard my cry.
² He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
³ He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear the LORD
and put their trust in him.
⁴ Blessed is the one
who trusts in the LORD,
who does not look to the proud,
to those who turn aside to false gods.^[b]
⁵ Many, LORD my God,
are the wonders you have done,
the things you planned for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.
⁶ Sacrifice and offering you did not desire—
but my ears you have opened^[c]—
burnt offerings and sin offerings^[d] you did not require.
⁷ Then I said, “Here I am, I have come—
it is written about me in the scroll.^[e]
⁸ I desire to do your will, my God;
your law is within my heart.”
⁹ I proclaim your saving acts in the great assembly;
I do not seal my lips, LORD,
as you know.
¹⁰ I do not hide your righteousness in my heart;
I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness
from the great assembly.
¹¹ Do not withhold your mercy from me, LORD;
may your love and faithfulness always protect me.
¹² For troubles without number surround me;
my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
and my heart fails within me.
¹³ Be pleased to save me, LORD;
come quickly, LORD, to help me.
¹⁴ May all who want to take my life
be put to shame and confusion;
may all who desire my ruin
be turned back in disgrace.
¹⁵ May those who say to me, “Aha! Aha!”
be appalled at their own shame.
¹⁶ But may all who seek you
rejoice and be glad in you;
may those who long for your saving help always say,
“The LORD is great!”
¹⁷ But as for me, I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;
you are my God, do not delay.

update on the family

2011-11-23T16:57:00.000-05:00

I've been going so long between posts I realize that there are many people that might be wondering what's going on with our family.
Well things are really good right now. Josh's recovery is amazing. His speech is getting better. Other than the occassional seizure that effect the strength in his hand, he has full use of his right hand.
Josh and I are both working hard to get more active and to eat healthier.
My goal is to lose weight and *look great* and to be healthier.
Josh, I'm sure, shares these goals, but he has a little something else up his sleeve that I'm going to wait to announce until he is ready.

Kosette is getting more and more ready for Kindergarten everyday. She can write her first and last name, She can recite her full telephone number and she loves to do her workbooks. Doing her preschool workbooks is her favorite thing to do during naptime.
James has been "spiderman" since the beginning of October. Everytime we go to the doctors offices he likes to take his spiderman mask along. James has also started potty training. With all of our trips to appointments and such it makes it hard to be consistant with him, but one several separate occassions he has take himself to the bathroom and had success! So we are getting close.

As for Kassie, even though she still refuses some babyfoods, she LOVES big people food. Just working on trying the right things for her. I think she's goin to LOVE Thanksgiving....which we are celebrating on Thursday and Saturday. Good for her...going to have to workout a little extra hard for me and daddy.
And in other news, I had mentioned about wanting to do some fundraising for families who are going through cancer. I have ideas rolling around in my head...I'm even thinking about starting a non-profit organization, I just feel so lost when I try to think about everything that might be involved...So, that's where I'm at...full of ideas, trying to figure out how to make it work.

We have past the first year

2011-11-02T21:38:00.000-04:00

Crazy how we are a year into this and Brain Cancer, Glioblastoma, Avastin, Chemo...these are all normal words in our vocabulary, we don't even blink an eye when we say them. Josh has had 3 brain surgeries and has dealt with so much. He's overcome obstacles, he lives daily with struggling with speech and communicating. He's come to terms with his need for a helmet and wearing it in public. He gets lots of stares, but as long as no one is laughing, we know that most people are just curious. There are still days when we cry, there are times when it's so stressful that we cannot deal with our normal responsibilities. But we know how important these moments are, and how blessed we are to be together. As Josh is beginning to feel better after his latest surgery, we are becoming more active and trying to pack as much life into each day as we can. We are doing our best to guide our children through this, and we are sure to talk about how God has a plan and we are part of that. We talk about heaven, and many times Kosette will tell us that she wants to go to heaven right away. We are living. I was reminded on Sunday that if we aren't looking toward eternity we are missing the point.
Kosette recognizes the word cancer everywhere and will say "that's what daddy has". Cancer has become part of her play. I remember learning about how children deal with life through play, so I'm okay with this. For James is the words 'Brain Tumor' that have become part of his play...and as he doesn't understand these concepts, he uses this to describe a number of things, including a bump on the head.
A comment about my appearance has just been rolling around in my head. The day that someone mistook me for Josh's mom. Now I can't stop looking up what would be the best facial treatment to make me look younger. I can't wait for my hair to grow longer (I've already dyed it to get rid of my gray) and it's helped me kick my weight loss goals into gear. Although the weight loss is something that I try every year.

The day that Josh had surgery I stayed at the hospital overnight, I had Kassie with me so I was unable to stay with Josh in the Post-Operative room so instead I set myself up in a nearby family waiting room. While I was there, another family was waiting for their 12 year old little girl to get out of Brain surgery to remove tumors. This little girl has gone through this years before, and now once again. I learned a lot about this family and felt such a burden on my heart for them. Her mother, Stacy, is a mom of 3 girls, this is her middle child, Kaley. Stacy was joined by her in-laws, the parents of her husband who passed away from cancer 7(?) years earlier and never met his youngest daughter. When the surgeon finally came out to talk to them I was asked to leave the room. I stood outside by a window with Kassie in my arms and I heard the sobs and cries of a mother receiving terrifying news about her daughter. I looked and caught a glimpse of her running to a nearby trashcan where she got sick to her stomach. What was happening there was...something I cannot really describe. The family invited me back in and told me that the dr said that as they were about to close Kaley's brain began to bleed uncontrollably and they couldn't find where it was coming from. Prayer chains were alerted and I know each of us was pleading to God for her life. A little while later the dr came back and the family allowed me to stay to hear. They had stopped the bleeding by packing her brain and they were waiting for another surgeon to travel in to help them find the bleeding and stop it so that they could close her up. Eventually this all happened and the main surgeon came out to tell them that until she woke up, they didn't know what to expect, but they were leaving her unconscious for at least 24 hours to allow her brain to begin healing. Over the past few weeks I've heard more from the family, she woke up and defied odds, but then she had infections, menningitis...Kaley had 3 surgeries in less than 2 weeks. I went to see her family earlier this week, Kaley is still in the hospital, in isolation, she has lost mobility of her arms and legs....this little girl needs healing. I ask that you would pray.

2011-10-12T09:39:00.000-04:00

There have ben times when I thought that what Josh has and is going through is my fault. You might ask why would I think that? So I shall tell you.
It all started in High School Youth Group. I had WONDERFUL youth leaders, Dan and Joel were both great Sr. High Pastors, each bringing their unique personalities to the ministry, and I have 2 of the most amazing small group leaders, Amy and Michelle. I was truely blessed to be part of that ministry. I still...10+ years later, remember some of the things they taught me and specific lessons... One of Dan's last lessons is almost as fresh in my memory as if it had been taught last week. It was pretty much his goodbye, when he was sharing with us about how God had moved in his life to lead him into a different ministry. I remember him sharing that his wife prayed that God would give HER a sign...and it came through the form of an air conditioner. This may make NO SENSE to someone who does not remember this specific Wednesday night. During his lesson he spoke about Moses and Abraham and David and people who are in the Bible with what seems to be a special closeness to God, they hear His voice and respond. Anyway, by the time this lesson was over we were challenged to pray that we would have that kind of relationship with God. We were told that it could be a "dangerous" prayer, because we didn't know how God might bring that relationship about...what it might take to get that relationship. But we were told that it IS worth it. Well, that night I know that I prayed that I would have that kind of relationship. So, today as I was getting ready for the day, I began to think about this again, and I realized something...The road for all of these people in the Bible, the ones that I prayed to be like, it was not easy for any one of them. Moses...wandering in the wilderness...Abraham, searching for a place to call home and waiting and waiting and waiting for the covenant to come to bear fruit...David, standing face to face with a giant...I could go on, Daniel, living in exile and repeatedly being persecuted, Paul, spending years in jail....Every one that you see went through some hardship.
I don't want to say that I AM like these people, But I wanted to show you that I did pray to be like them...and now I stand by as my husband has spent this past year in a fight against brain tumor/cancer, and now infection, and it occurs to me that this might be part of an answer to prayer as i come to rely on HIM more.

2011-09-14T20:00:00.000-04:00

Okay, it's time for an update. Honestly you probably know all of this already, at least most of you do.
Well, 2 weeks ago Josh was complaining about pain in his head. As I examined his incision, I noticed that there was a LOT of swelling above his eye and the whole way back to the back of where his skull had been removed. about 4 days earlier Josh had bumped his head on the wooden bunk bed while putting James into bed, and the pain had increased from then. I called the oncologist because I was concerned about his head, as well as the fact that he had been coughing for 2 weeks straight and he was overly fatigued. We were sent to the ER, at the ER they did a catscan of his head and a chest xray and they cleared him to go back home. In the following days the swelling got worse until it looked like Josh had been in a fight with a swollen black eye. The pain increased, the cough continued and in the middle of the night he got shaking chills. When we took his temp it only read 99.8. We called the oncologist again (at 2am) and Josh was sent to the ER to check his white blood cells. He got there and they all probably thought he was being seen for his eye/head, but nope, white blood cells where normal. He did have some issues with his oxygen levels dropping low, but they did a breathing treatment and the numbers improved for a time, and so they sent him home with antibiotics for bronchitis. Later that day AS we were in the process of moving the rest of our stuff from Beavertown to Richfield, Josh's fever spiked to 101.3. Once again I called the oncologist. At this point Josh was completely against another 1 hour trip to the ER, to spend a couple hours there and then just come right back home. The dr didn't want to send Josh, and since his white blood cells were fine that morning, he didn't see a reason to send Josh back to the hospital. We were told that Josh could just take tylenol as long as that kept the temp under 101. So, Josh began taking tylenol. Now my husband REALLY didn't want to go to the ER again, and so he disregarded the directions for taking it, and i'm sure he was overdosing on tylenol. That's how we made it through the weekend, temp fluctuating between 99.3 and 101.7. Josh still didn't want to go. Monday morning is when it was up to 101.7, but shortly after taking tylenol and cooling off a bit, Josh's temp was under 100. I told Josh that I'd give him that last time, but if it spiked again we were calling the dr. And at 6pm that evening it was 101.7 again. Call to the dr and Josh was taken to the ER, this time by his dad, once again to check his white blood cell count.
Somehow the ER doctor that first came to see Josh didn't think that anything that was going on warranted his being in the hospital or having his blood count checked, thankfully another dr took over who communicated with the oncologist. His blood count was good, his cultures were normal, but because of the continuing spikes in temperature, Josh's oncologist wanted him to be admitted for more testing.
I went to the hospital Tuesday morning...the morning that the van broke down on my way, I borrowed a vehicle and then someone fixed the van.
The doctors that day were completely baffled about what was going on with Josh, they did chest xrays, lots of bloodwork, they said that if nothing else came back with answers that they would do an MRI. Tuesday was the day that they began realizing that Josh wasn't breathing right. They measure the amount of oxygen in your blood by percentages, it's okay as long as it's about 90. Josh was dropping down to 82.
I left tuesday night, and went back wednesday morning. Wednesday they still didn't know what was going on with Josh, but he was still on oxygen and they were pumping antibiotics into him to cover a large number of things. Wednesday I got flooded in at the hospital, that night they took Josh for an MRI, and an hour later we were given word that Josh has an infection in his brain, and that we would find out in the morning what treatment would be and if he would be having surgery to drain it. Needless to say, not much sleep that night.
Thursday we got word, surgery would have been the best treatment, but not an option for Josh because of his chemotherapy. he has another 3 weeks until it becomes an option.
We saw an infectious disease specialist who put Josh on stronger antibiotics. After a couple of days of this you could already see a difference in Josh. He continued on the oxygen though, the doctors still don't have an explanation of that. They mentioned that he might be at the begining stages of lung disease. but also mentioned that it might go away when the infection clears up. We just don't know.

Ok, so what we do know, JOsh has a PICC line, it's like an I.V. that goes just about directly to his heart (tubing inside of an artery) and twice a day I push saline, antibiotic, saline and heparin (blood thinner to keep line clear). We have oxygen tanks and liquid oxygen all over our house.
We've been living in our new home, love it! Still getting the hang of everything. The kids started Awana tonight, first time for both of them, pretty excited. Tomorrow is Kosette's first Dance class with her BFF cousin, Jazmine. James is at such a cute place right now, I love to hear him talk. Kassidee is the cutest little girl, the only problem is she doesn't eat! We go to a specialist tomorrow to see if he can help with this.

2011-08-30T22:27:00.000-04:00

At 6:10pm tonight I sat on my front porch disappointed. My mom and I stared across the street trying to figure out how we could get everything out of storage with 1 mini-van. We also only had 1 young man show up to help. We joked about confiscating trucks that stopped at Uni-Mart across the way. We decided to make a couple phone calls. Shortly after that my dad got back with the mini-van packed full and that one young man, And to my surprise there was another older gentleman who met them at the storage facility with his car packed full. We quickly unloaded those things and as we were working we had another couple arrive with a TRUCK! Woo hoo. That made me happy, and then things got better, another gentleman showed up with his work van all empty and ready to load. Things got better and better, and then right after they headed back to the storage unit another man showed up dropping off his truck and his son to help out. I was so overwhelmed with gratitude for all the people who have shown up to help us! EVERYTHING was out of storage as of that 2nd trip, and there was enough man-power to get even the washer and dryer in place.
In other news, Josh has been very sick. He had a cold last week that turned into a cough, and he seemed to be starting to get over it the day chemo started. His white blood cell count was good that day, and he got his chemo meds. Well, his cough has continually gotten worse, as well as his fatigue. His body is sore and even his head hurts. He's had some other side effects from the chemo, but it's mostly controlled by medicine. Josh is about to hit the point when his white blood cells are at their lowest...this means his body won't be able to fight what's going on, and that worries me. I just never know when to call the doctor about stuff like this. And I lost my thermometer so I can't even go by his temp right now (100.5 or above means see the doctor). Josh is also having difficulty with the fact that he can't do what he wants to as far as moving. He wants to be actively involved, he wants to accomplish things, he wants to be useful. It's hard for him to realize that he's still "useful" as he takes care of Kassie, and that he doesn't even need to do that if he's not feeling up to it. We need him to be healthy, we need him to be here for us. I can see him getting frustrated with how his body won't "cooperate". Josh is sick right now, and definately dealing with what chemo and a brain tumor does to his body.
Well, what's in store for tomorrow? Focusing on the "white house" as James calls our new home. We have our refridgerator and our stove today! The part about starting in a new home again, that's pretty exciting, we are trying to just enjoy this.
More information about the house for those of you who may still be in the dark. This house is a Ranch style house with a full basement and a basement garage as well as a garage separate from the house. It has a sunroom, a nice opened kitchen, a big dining and living room (with a fireplace) and I can stand at the kitchen sink and see straight through the dining room into the living room, this is the type of setup I wanted so I can keep a good watch on my kids and work in the kitchen. There are 3 bedrooms, a very nicely sized masterbedroom that we are repainting a light blue color (is purple) and connected to this bedroom is a half bathroom. Oh, and LOTS of closet space! There is a blue bedroom that we are setting James up in with the bunk beds and a red room that Kosette is in with a full sized bed, her room makes her feel like a princess, with a full bathroom right between these two rooms. Kassidee will start in our room until she sleeps through the night then she'll move in with James for a while. Beside the kitchen is a very nice laundry room with cupboards. And the kitchen is a WOODMODE kitchen. If you are from this area you should know that woodmode is VERY NICE.
We have not bought this house, a family from church was able to purchase this house and offered to lease it to us. Until the moment that we heard about this offer, I was stuck with a "no way" attitude about renting. I just hated the idea of putting my money into a house but not building equity. I am sure that as the words were hanging in the air when I was being told about this opportunity that God just suddenly opened my eyes to the wisdom of it, and I had said that the situation would have to be a perfect situation...this seems to be it. And as was said when talking to a friend tonight, there is no way that if we had bought our own home that we would have ended up with a house that was so great to fill our needs.
Lets see, the house is in richfield, close to church, close to family and close to a lot of friends. The house is ranch style, which means that other then the steps to get into the house, we will not have to worry about stairs. It's a great size for our family of 5, and I know that we can make lots of memories there. And that's just the begining of why it's good for us.
Ok, I need to get some sleep now. I will send out private messages to some people soon with our new phone number (which will be activated Thursday night) and it should be in the bulletin at Niemonds on Sunday (I think) so, if you want our number and aren't sure if I'd message you, send me a message to make sure I send it to you.

What a year this has been

2011-08-18T17:25:00.002-04:00

I've been reflecting on our year, in 2 days we will mark the beginning of another year in the Joshua Mott family. Our "family year" starts on August 20th, as we were married 6 years ago on that date. Now thinking that way makes me start to reflect on the whole 6 years. Not sure how much I'll write about here, but this might be a long one.

6 years ago, on a beautiful August day, Josh and I were married at Congregational Bible Church in Marietta, PA (since then the building is now a parking lot and they've moved across the street to a new facility, with a name change, Community Bible Church). They ceremony was a tear-jerker, as Josh's dad was the Pastor who married us and signed the license....I have to say that because he's very forgetful and always asking if we have a license to kiss :-)

After our wedding and reception, where we danced our first dance to Ben Fold's "The Luckiest", we headed north to Maine for a beautiful honeymoon in a cabin on a lake.

When we returned home from our honeymoon and stepped into our newly bought home in Beavertown, it was so overwhelming...I mean it, the STENCH was overwhelming.

Josh had been living in the house over the summer, but apparently due to it not being lived in for a long time before that, roots had grown through the pipes and the sewage was backed up in the basement after a good rain. That was our first lesson in home ownership. We spent that first week living in Josh's parent's guest bedroom.

Over the course of that year we had many lessons that young adults need to learn, getting into our first home, saving to pay for oil, being prepared. We made some mistakes, and we learned. We also found out in February that we were expecting!

Expecting what? A baby!

Over the next few months we became increasingly stressed out, worried over finances, not knowing what to do...And at the same time, my mom was out of work due to her cancer, and my parents had their own concerns over finances. Through these situations, we determined that we would bring our resources together, and my parents moved in with us. My dad was able to find a good paying job right away, and my mom didn't need to worry about working for a while. within a week of my parent's move in to our Beavertown home, we headed to New York for my Cousin's wedding and to Niagara Falls to celebrate our first anniversary...a very pregnant me.

Our next year was spent in love with our very precious baby girl who was born on October 29th, 2006. I was very thankful for moms nearby to watch Kozy as I was working part time. That year, Josh was working at Bingamen and Son Lumber, Nightshift, so our days were opposite, he'd come home to sleep at 4:30am, and I'd leave for work at 7, get home for lunch and He'd wake up for lunch and head to work at 3.

That was our life.

Then we came upon our second anniversary, I don't know that we did anything that year. But a new year in our family began. We celebrated Kosette's first birthday, shortly after we began thinking about having another child. I had thought I wanted my children to be 2 years apart.

Josh continued working at Bingamen, nightshift. My parents still lived with us. Sometime around february I began looking up "Christian College, Counseling, family housing" I knew that when Josh left Lancaster Bible College, he wasn't leaving because he was "done"...he was having a hard time, dealing with some life issues, and was too distracted to be a good student. AND he had just realized that he needed to change his major from Youth Ministry to Counseling. I didn't say anything to Josh about what I had looked up, just did it quietly, when I had free time at work.

In March we found out that we were indeed pregnant again. And then later in March Josh shared with me something that was on his heart. He'd been wrestling with it throughout the night. Josh felt lead to go back to school. I listened to all that he had to say on the subject, his concerns that taking a family to college might be impossible, his thoughts about commuting, or living away from the family and "visiting" on weekends. With a new baby on the way, several of these things did not seem right to me. But then I shared with him that I'd been looking things up on my own, and I had come across this school, Johnson Bible College, that looked to have a great Biblical Counseling course AND had family housing. Early April Josh filled out the application and began that process. By June we knew we were headed to Knoxville, TN. Josh finished working at Bingamen in late July, but before leaving, we went to Knobels for a company day at that park. It was during that trip that our first signs that something might not be right inside Josh's brain occurred. During a pirate ship ride (where it rocks back and forth) Josh got a ringing in his ears and became disoriented, and was unable to speak right. At the time we thought it was a panick attack or something. We even laughed when he couldn't talk right 10 minutes after the ride was over.---We know that if at that time they had done a CAT scan, or MRI, they probably wouldn't have seen anything, or it would have been so faint that they would have just had questions.

August 1, 2008 came around and it was moving day, we had a truck all packed and we headed down to JBC caravan style. 10+ hours later, we pulled into 7805 old orchard court and were greeted by Curtis and Kelly. Two great men of God who helped us unload the truck in no time at all.

Our third anniversary, we were far from the home that we knew and on an exciting new adventure. We started the next year in the life of our family as Josh returned to the life of a student, but this time, a father and husband as well.

I completely enjoyed being a stay at home mom, having lots of time for my almost 2 year old Kosette. We had so much fun. We learned how to be a family of 3. We met so many wonderful people, and made some great friends. We were blessed by our neighbors, and so glad to find out that most of our neighbors had young children, it was a great community to live in.

We had to learn how to live on $400 or less a month, and this had it's difficulties. There were several times when going to church was up in the air because we didn't know if we had enough gas to get back home.

Josh was going to class full time, working part time (as many hours as he was allowed to work). And then November 7, 2008 we had a surprise when our baby boy decided to arrive a month earlier than expected. Our precious baby boy, James, though tiny, was very healthy and came home right away with me.

By the second semester we began welcoming children into our home for me to watch to earn some extra income. And my that summer we were homesick, so we headed to PA for the summer.

During our time in PA there was one day that we took Kosette to a nearby playground and Josh was swinging beside her and was suddenly hit by the same sort of "attack" that he had been before. Once again, we didn't know what caused it, but that was the first time I thought about the possibility of it being a seizure, and I remember telling Josh that I thought he should see a doctor.

We learned that year that we missed the freedom of living in a home, just as the Joshua Mott family. So we were pretty excited to get back to Tennessee in August. Once again, August 1st we headed back down and once again, I can't remember if we even celebrated our 4th year anniversary. I'm not sure why, but I never hired babysitters. I would only ask for help if I truely could not take the children along for something, but never just to go on a date.

When we began the next year, there were new people on campus. I decided to remain in my home most of the time, just within our family. I think that there was something about having extra kids in the house, that I would get tired out and when they were picked up, I'd just want to relax, and so I didn't really meet the new people, or spend time to get to know them.
As far as school went, i think this was a great year for Josh. I can't remember when he had each class, but I loved when he would be excited about what he was learning and he would share it with me.

i continued to enjoy my children, and seeing the similarities and differences between them. One of the children that I watched (3 all together) became like family to us, she was with us almost every day of the week, for many months, and then 3 days a week. I think that James and Kosette actually may have thought that she was their sister for a little while.

As the next sememster began, somehow I got out of the house to meet some people. Josh must have had class with them or something, and somehow plans were made to get together with them, so glad this happened as God used them greatly in our lives with the events that were to come.

This was the semester that Josh had to take a preaching class...which he loved and really did well in. And for this class he needed to preach somewhere outside of class...we headed to PA in April 2010 where Josh preached a sermon about Faith. Following God, even when though you cannot see what His plans are.

It wasn't long after that when we found out that we were pregnant once again. This time it was quite a surprise! We spent most of that summer in TN and realized that we should have spent it in PA, the weather was such that we couldn't really leave the house during the day. We said some hard goodbyes to some very good friends who we'd lived there with for 2 years, including the girl who had become like a sister to my children.
That summer I questioned if I could make it another 4 years. I was feeling rather lonely during the summer, having said goodbye to some good friends. August 1st arrived and people came back to campus. I knew that I had to be outside in order to make connections with people, and that's what I did, every night at the playground, building relationships.

We began the next year of our marriage and our family as Josh started his Junior year at JBC. It started a little rocky as we realized that how we had been trying to get by financially just wasn't worth it, the payment we had to make on our car and the insurance for it exceeded the amount of money that we made per month. And with my 3rd pregnancy I didn't think I could continue the babysitting for a while. So, in September we decided we needed to turn over our vehicle to the bank. We had no idea how we would get to the doctor, or grocery store. I cried about this almost every night. But I felt a weight lift off of my shoulders when I finally gave in and decided to let go of this vehicle. Within the week of it being towed away, people from our church in Tn came together and took Josh out to find a new family car. Josh brought home a mini-van. it was perfect! (not necessarily without defect, but perfect for our needs) This is the same van that we drive around today. I breathed a sigh of relief. About a week later I was working in the kitchen on evening after putting the two children down to bed when I heard it, Josh making noises and unable to actually say anything. I looked at him and told him to sit down. There was something about it that reminded me of those other 2 times, and I thought...this is worse. That was the night of Josh's grandmal seizure and this is the story of Josh's first seizure if you'd like to read the whole thing. This began us on the journey to finding out that Josh has a brain tumor, and that it's grade 4 Glioblastoma.

Kassidee was born during that time (in January) and her birth brought with it joy and tears. The fear that Josh will not watch her grow up has been constantly there throughout her life. We love our baby girl, she brings grins and giggles as she accompanies us to each doctor appointment.

In April when we heard the news about the severity of Josh's diagnosis and his prognosis, we decided that it was best to be close to family, so once radiation was complete we moved back to PA. We have spent the summer here, and it's been really good to have some in-home babysitters in my parents, but with our 6 year anniversary literally days away, and the beginning of a new year in the life of our family,

I'm looking forward to being in a home that is just us again...and it looks like that could happen soon.

Oh, and we will celebrate this year! One thing we've learned is to not let things go by, but to enjoy and celebrate, and be part of the moment at hand.

I know I didn't write all the details of this year, but I've posted a lot throughout the year, so most of it is already part of my blog. Through all of it, God is Faithful!

2011-08-14T15:24:00.000-04:00

When I hear the word "rent" usually this thing goes off inside my head and I think, i don't know if that's something I really want to do.
But in our current situation, I have been asking God over and over again to help me to know what to do about housing. If it'd be best for us to rent, that He'd help me to be okay with that, and that the "perfect" situation would come up.
I say this because today we were told about a renting opportunity, and it's the first time ever that I actually started getting excited about RENTING. I don't want to jump on it just because I got a little excited, so we are still going to go to our appointment on Wednesday about the possibility of buying a house. I am not sure how God is moving here, but please pray with me that we would be given wisdom and clarity on what will be best for us.

2011-08-13T20:54:00.000-04:00

I haven't slept well in days, and now I have a splitting headache. Don't know if those two things are connected.
Josh has been having a new symptom, and my call to the doctor and message never got a return phone call, so I'm hoping that means that it's not urgent. We think it's possible that it's a new seizure. honestly, right now I could deal with seizure much better than the unknown.
So Josh starts Avastin on August 24th. The major risks to him are bleeding in the brain or clotting in the brain.
Kassidee has large tonsils (as well as another strange growth in her throat) but the doctor wants to treat her reflux first, and in 2 weeks if she's still unable to eat well we may be scheduling surgery to remove my 7 month olds tonsils.
James has a "funnel chest", he got an Xray, and it showed that he does have a slight deformity that may include an enlarged heart... But for right now everything looks well enough, so he just goes back in 3 months for his 3 year checkup where they will continue keeping an eye on it. The plan for now is yearly Xrays.
And Kosette, well she didn't see a doctor, she's seems healthy...she's just tall for a 4 year old.

2011-08-11T11:26:00.000-04:00

hello everyone, having a hard time trying to get on facebook today, so I guess I should stop trying.
Just wanted to let you all know how things are going. We will be heading to the oncologist in about an hour, Josh's actual appointment is at 1:30pm.
It makes me a little nervous to go to any appointment for Josh. And if you read the last thing I posted, you may understand a little about my worry surrounding Chemo. But as far as we know there is not a better choice.

Lately I've had this struggle...it's hard to be 28, with a young family, and lots of young friends with young families that have never been through anything like this. Why is it hard? Because although those friends care for us, and try to have sympathy and compassion, it is still something foreign to them. They don't live it daily, and their understanding of what this life is like is very limited.

I love my friends, and in no way want to hurt them by saying these things. I'm not aiming to upset anyone, or to point fingers. It's just like with anything, if you haven't lived it, you won't understand it. FOR EXAMPLE (because this pertains to many situations) when my sis-in-law had several miscarriages, my heart hurt for her, I tried to be there for her as much as I could, but I'd never walked in those shoes, and so it would be easy for me to try to say the right thing and fail miserably. However, someone who had walked those shoes was in a position to be the support that she needed. It didn't mean that I didn't care for my sis-in-law. I really tried, and I know that she knew and appreciated that, just like I know my friends care and I appreciate that. But that alone wasn't enough to keep my from saying something that I thought was fine, but made her want to cry.

I do hear things from time to time that upset me, based on the circumstances my family is in, but these things are usually meant to be uplifting.
Sometimes we will post something based on what has happened in our day, and it will sound really negative, and so all of our friends "come to the rescue" to try to make us think happy things. I love you all for that. But one things we know is that God made us with all of our emotions, even Jesus wept. I also know that we are sinful people, and we make mistakes sometimes, if we try to pretend it never happened, that doesn't make us better, what makes us better is recognizing what we did, apologizing, repenting...turning it over to God. And by doing those things, many times it brings us closer to one another.

once again, I may have written too much here. I am so thankful for my friends. We've had friends drop everything to be with us. I think that's one thing we have been abundantly blessed with, friends.

So, what else is going on with us? tomorrow taking myself, my baby and my son to the dr. mine is simple blood work and renewed prescriptions. James has something called pectus excavatum,...it means that he has a "funnel chest". I wanted to have the doctors begin keeping track of it, this will be important for his future. It could be something that gets better with age, or it could get worse, and it could effect his heart and lungs. So I think it's important for the doctors to have a starting point with him here. Kassidee....well, just made this appointment because of an episode last night. My baby girl always coughs at night, but when she gets upset it's worse. Yesterday, if it had gotten any worse, well, she may have ended up near her cousin Jadin. (who is in the hospital with pnuemonia). So, I'm thinking she takes after her mommy with the asthma, possibly. The other thing is that she CAN'T eat very much. We were able to get some sweet potatoes down yesterday, and I thought maybe she'd just reached the point where she's ready to eat (mind you, she's 7+ months old). I tried oatmeal again this morning...nope, can't eat that....I tried peaches AND bananas, neither went down without a whole lot of gagging. Don't know what that means.

I figure when you read this you'll probably think I'm one of those moms who thrives on their kids having medical problems, I promise, I AM NOT! I hate seeing my little ones sick, or not doing well. The one thing I am is cautious...I don't want to risk not seeing the doctor about something and then having a serious health concern later.

Next....on Tuesday of next week I meet with the Oral surgeon, yay me :-( going to get 5 teeth out...wisdom teeth included.
And then on Wednesday, we meet with a realtor, we are going to try again to see if we are eligible to buy a house. I would really like to be in our own house, to get our stuff out of storage. I love my parents, and they have been a huge blessing through this, we've been able to manage all 7 of us under the same roof. And although it's been working, it's not completely ideal. Not for any of us. I will be happy to get the 5 of us into our own home, get that set up, and be close enough to both Josh's parents and my own parents to see them throughout the week. Maybe my brain is out of whack, because we do have built in babysitting :-) But I don't think that's fair to my parents all the time either.

Why I like when school starts...

2011-08-10T21:38:00.000-04:00

I was thinking about it the other week...August is almost always the start of school, August is the beginning of my favorite time of the year. Let me tell you the things that I think about and like so much about August and the beginning of school.

i remember as a kid, the night before school started I could never sleep, a bit of it was nervous energy, but it was also excitement. By that time the summer had gotten "boring" and I was ready to be back with some friends and figure out what class was going to be my favorite.

I met some of my closest college friends on august 25th, 2001, including my husband.
I love when it's the beginning of something new, and I get to think about schedules, what I might do differently. It's a chance to change things.

August 20th is the day that Josh and I got married, and although I know it's not the beginning of Fall, that's when I think of as the beginning of Fall.

At JBC, August 1st was our move in day, and it's the day that families start returning to campus after their summer vacations.

Ok, that's all I got for now.

Avastin, what I know so far

2011-08-10T14:56:00.000-04:00

I wanted to share with you as much as I know about chemo so far. From our talk with the Neurosurgeon, Josh will undergo Avastin treatment. He also told us that the oncologist will probably team this up with another chemo drug to double team the cancer. We will learn more about this tomorrow at our appointment. Until then I have added below the information that I have been able to find online about Avastin, what it's for, possible side effects and how it is administered.
Chemo drugs can do horrible things to the body, we all need to remember that, I really need to remember that.

Indication

Avastin is approved to treat glioblastoma (GBM) in adult patients whose cancer has progressed after prior treatment. The effectiveness of Avastin in GBM is based on tumor response. Currently, no data have shown whether or not Avastin improves disease-related symptoms or survival in people previously treated for GBM.

Possible Serious Side Effects and Additional Important Safety Information

What is the most important safety information I should know about Avastin?

Avastin can result in a serious, and sometimes fatal, side effect called gastrointestinal (GI) perforation. GI perforation is the development of a hole in the stomach, small intestine, or large intestine. Symptoms may include abdominal pain, nausea, vomiting, constipation, and fever. Avastin therapy should be stopped if GI perforation occurs.

Treatment with Avastin can lead to slow or incomplete wound healing (for example, when a surgical incision has trouble healing or staying closed). In some cases, this event resulted in fatality. Stop Avastin for at least 28 days before voluntary surgery. Do not start Avastin for at least 28 days after surgery and until the surgical wound is fully healed. Avastin therapy should be stopped in patients who experience slow or incomplete wound healing.

Treatment with Avastin can result in serious and sometimes fatal bleeding. This includes coughing up blood, bleeding in the stomach, vomiting blood, bleeding in the brain, nosebleeds, and vaginal bleeding. People who have recently coughed up blood or have serious bleeding should not receive Avastin.

Serious side effects with Avastin include:

•The formation of an abnormal passage from parts of the body to another part, sometimes fatal. Stop Avastin therapy if this occurs

•Stroke or heart problems, which can be fatal. Heart problems include blood clots, mini-stroke, heart attack, and chest pain. Stop Avastin therapy if these occur

•Too much protein in the urine, which may lead to serious kidney problems, was higher in patients taking Avastin compared with patients who did not receive Avastin. Serious and sometimes fatal kidney problems (nephrotic syndrome) occurred in less than 1% of patients. Your doctor will monitor your protein level and may stop Avastin therapy if your level is too high

•High blood pressure. Your doctor will monitor your blood pressure and may start you on medications to control your blood pressure. Temporarily stop Avastin if not controlled with medications. Avastin should be stopped if blood pressure severely spikes or if disturbance of the brain from high blood pressure occurs

•Nervous system and vision disturbances. Symptoms may include high blood pressure, headache, seizure, sluggishness, confusion, and blindness. Stop Avastin therapy if these symptoms occur

•Infusion reactions. These may include high blood pressure or severe high blood pressure that may lead to stroke, difficulty breathing, decreased oxygen in red blood cells, a serious allergic reaction, chest pain, headaches, tremors, and excessive sweating. Stop Avastin therapy if severe infusion reactions occur

What are the most common side effects of Avastin?

The most common side effects of Avastin that occurred at >10% and at least twice the control rate include nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin.

When do I take Avastin?

You get your Avastin infusion every 2 weeks to treat your GBM.
The first treatment is 90 minutes, then 60, after that its 30 minutes each infusion

How do I take Avastin?

You take Avastin as an infusion. That means you receive Avastin through a small needle in your vein or through a port.

What can I expect from my infusion?

Because Avastin is given as an infusion, infusion reactions may occur. Stop Avastin infusions if infusion reactionsare severe. Your doctor or nurse will monitor you for signs of an infusion reaction, which may include high bloodpressure or severe high blood pressure that may lead to stroke, difficulty breathing, decreased oxygen in red bloodcells, a serious allergic reaction, chest pain, headache, tremors, and excessive sweating.

What to remember about Avastin therapy

There are some side effects that may require you to stop Avastin therapy. But as long as your side effects stay manageable and your cancer is under control, you may keep taking Avastin.

2011-08-10T12:10:00.002-04:00

So, with all of the babies being born it definately brings on baby fever.

This morning I just took in the extra moments I had with each of my babies, holding them, enjoying them.

2011-08-05T22:31:00.001-04:00

I have been waiting to post this.

it was probably about 4 years ago that I lay in my bed with journal in hand and began writing prayers in my journal, and as I sat there thinking through each and everything that I could think of to pray about, two very special prayer requests came to the forefront of my thinking. For years these two separate things kept burning on my heart, the need to pray for them.
So I prayed, whenever a passing thought would remind me of these two things, I would pray.
What I'm about to say has nothing to do with me, not really, I just prayed about the things that God showed me to pray about. I prayed for good outcomes, but I never knew what would come of these situations.
Well, one of those two things that I was praying about came to be on January 5th of this year. God brought a man into my sis-in-laws life. It may seem trivial to some that I prayed for my sister in law to meet a guy, but I could see that it was the desire of her heart to love a godly man and be a wife to that man, and to have a family with that man. We had no idea who that man was going to be...but by what would be considered a strange occurance, my sis in law began getting to know a man in 2009, he went overseas in 2010 and they continued getting to know each other thanks to modern convienences...And God drew their hearts together. And then january of this year they were married in the wedding of her dreams, on a beach! We've seen a little bit at a time of how God truely did answer this prayer completely. (I can't wait to see them together more, hoping to get more time together with them).
So, back in November of 2010 we heard that there was the possibility that a prayer was being answered. I say possibility because we'd been there before, this prayer was for a baby. My brother and his wife began trying to have a baby around the time I had Kosette (I think)...it wasn't long after that they they got their first positive pregnancy test, followed by some of the worst news. My brother and his wife when through several devastating miscarriages. We continued to pray. Then they got more devastating news that they would probably never be able to have a baby of their own. So in November when the news came that they were indeed pregnant we began praying more and more. Thankfully as their pregnancy progressed everything looked great. my sis-i-l made it to 1 day shy of 41weeks, and yesterday welcomed their son. This is a second answered prayer.

I know God has answered more than just these two prayers, but these specific prayers stick out to me. I would never want to say that God waited until now to answer them just because of our situation, but what I will say is that God is wise and his plans extend in so many ways, we will never see all of the twists and turns of His plans, who will be effected, who will learn something from our situation, or what will come of any of it. But what I can say is that by answering these two prayers as we are in the middle of a battle for Life...God just shows us how faithful He is.

2011-08-05T22:09:00.000-04:00

Life in my house is super busy, my husband is just over 2 weeks out of brain surgery, i had 2 days at the dentist this week, took the pup to the vet, I took my husband an hour away to see the doctor this morning, I made several trips out of the area for various reasons including meeting my nephew...let's see, what is next week? hope for a call back to start the loan process again, see if we can get our own house, at least 1 dentist trip, setting up an appointment with the oral surgeon for myself, doctor appointment for myself and doctor appointment for my son, meeting with the oncologist and setting up chemo treatments. Let me just say, it's difficult at times to get the normal stuff done. I apologize, I know that in my busied life I'm dropping the ball on some things. Wonderful people have blessed us with their support, we've received help in the form of checks, and I'm sorry to report that we haven't made it to the bank since then. That was literally right before josh's surgery, and other than going to church last sunday, we haven't been over to that side of the mountain. Josh is not up for long trips out. We tried and trust me, it was miserable for him, he's so tired. He even took me out on a date this week but before the meal was over he was already super exhausted. When we say that we went out somewhere, you better believe that even a trip down the road is a big trip for Josh. This morning Josh had his doctor appointment, which is a 4 hour block of time from leaving the house at 6am to returning at 10. This appointment alone took everything out of Josh for the day. The rest of us drove down past Harrisburg to meet my brother's son. Josh stayed home. It was hard to be away from him, I worried a little, and then was ready to get back to him...but I was SO SO SO glad to get to meet that precious baby boy. We took my brother to lunch and I could tell that he couldn't wait to get back to his wife and baby, I knew that nervous worry and just that desire to be with them and missing them, even if only for a short time. I can see my brother trying to take care of his family, protecting them and worrying for their health and safety, please pray for them as she's recovering from a c-section and my nephew had some breathing difficulties at birth.

Anyway, by this whole rant here, I just want you all to know that if I've dropped the ball on something that you excepted of me, I am sorry. It's probably not an excuse...but please understand that I am not trying to be rude.

Okay, I hope I'm not offending anyone here.

2011-08-03T23:42:00.000-04:00

The last few days have been kinda off for me. Today I couldn't sit around the house. Due to today's events I would have gone crazy just sitting still, so I decided to try to make it fun. It was great to see the kids smiling and having a great time, Kosette told me several times that this was a very fun day.
There were definately some highlights today, but sitting in the dark car alone with my thoughts again...i guess I can't really describe what it's like very well. There is fear, there is sadness, there is loneliness. I find myself feeling all used up sometimes. I don't feel USED, that's not it...like I said, i can't describe it well. it's not helpful to try to tell someone what it's like and have them say something corny, or come back at me with their own issues. And it's difficult to look someone in the face and try to even start talking about it.

Did you know that I really struggle with the idea, the fact, the...whatever it is, with knowing that I won't be having even 1 more baby? You'll look at me like I'm crazy and say to me that I've already got 3, aren't my hands full enough? Well, don't look at me like that, you don't have to make any points. My heart was just not ready to let go of that part of my life. Don't Judge Me.

I'm afraid because of something I heard, I don't worry about it for the immediate future and that's good enough for now I guess, but knowing that the possibility that it's around the corner somewhere...makes me afraid to wake up in the morning. And it makes each goodnight a little more important.
Ok, I need to stop writing, i've already been through all of this in the dark car, don't need to recap on all of it.

2011-07-28T14:12:00.000-04:00

one of the hardest things for me since surgery has been getting past this 4-6 months. I know that this WAS Josh's prognosis, with tumor in head, which now, the majority of that tumor is no longer there and the doctor has given no new prognosis yet. And I know that the doctor does not hold Josh's days, he doesn't know the number of them.
I have just had a hard time letting go of those words, and what that time period means. In a matter of 3 months, Josh's tumor went from a very small size (maybe a quarter all the way around, but not solid, just little spots and whispyness) to the size of a tennisball---solid.
I just keep praying that God would completely remove the rest of this "enhancement" that when they go back to look at new MRIs that they would find that what they had seen after surgery is completely gone. I want this cancer gone! As long as there are cancer cells in my husbands body, I will not completely relax about these things.
I know I've said this before, but I'll say it again, in case there are new people reading this.
josh has had ALL of the radiation that his brain can handle. He will not have anymore radiation. I don't know if that means that gamma knife surgery is off the table too, but I'm sure we will find out.
We go to the oncologist on August 11th, I believe, and there we will discuss chemotherapy (and any options that might be available to us) Temodar in full strength may be the way to go, otherwise, the possibility of Avastin....or other strong chemotherapies.
Temodar would be in pill form. This is what Josh took before, only before it was only a partial strength.
From what i read about Avastin, this may require a port. It would require going in for appointments (I think every couple of weeks) in the begining it would take 90 minutes, then 60, then 30. I think that Avastin works to keep new blood vessels from feeding the growing tumor, it doesn't attack the actual tumor.
This is all I know so far.

Ok, update on Josh.
He is doing really well. He's been up and down the stairs a few times. He still gets very tired, and needs to make sure he gets his rest. He is walking so much better than last week. He will need a cane for leaving the house (my mom is looking into Saturday's market for a nice cane). He is working on coordinating his right hand, and getting better every day. The biggest thing you notice when being with Josh (other than the huge scar on his head) is his speech, a bit slurred and sometimes jarbled, especially when he gets tired. (that is a good indicator of how tired he is).
Josh is in actual "going out of the house" clothes today, first day in jeans since surgery. he does his best with the kids. He loves on them as much as he can, but after a while of being with them, their energy level gets to be a little too much for him.
josh wants me to tell you that he can stand on one foot and hit himself with a pillow if he wants to :-)
Well, we are about to see friends who travelled all the way from New Hampshire to see us!

If you ever love someone

2011-07-28T13:13:00.000-04:00

the following thoughts came after a conversation with my dad today, thanks dad.

If you are ever to love someone, you will get mad at them, and they will get mad at you, you will probably hurt them (not physically) and they will probably hurt you. They may make you sad at times, you may make them sad at times. There will be times when you disappoint them and there will be times when they disappoint you. All of these things are part of relationships.
BUT if you truely love them and they truely love you, there will be forgiveness, there will be hugs, there will be a true understanding of one another.
There should be more times of laughter than sadness, more kind words than harsh.

The good things that you share together should completely overshadow those rough times.
Every relationship has it's ups and downs. As human people with a sinful nature, we all have our weaknesses, we will fail our God, we will fail our loved ones and we will fail ourselves. God teaches us what love and forgiveness are, and we need to live by his principles, then we will have less time being mad, hurt or sad. And more time enjoying the relationships that God has placed in our lives.

I write this as a reminder to myself.

2011-07-22T18:34:00.001-04:00

Now that i've had a moment to think, i find there is something I'd like to say. For the moment we are going to close our eyes (figuratively of course) and pretend that you are all my very best friend who I'm going to share with very extra openly. That might not be completely accurate, as sometimes it is easier to write what I'm thinking than it is to speak it out loud. But lets just go with this....
Leading up to Josh's surgery I had an incredible amount of peace about the surgery. I did not spend a lot of time worrying about what was going to happen, though the risk of losing my husband was there, it had the tiniest corner in the back of my mind. i was not letting it be something that i spent a lot of time thinking about and worrying about. During surgery, my company was good, we had moments of conversation, a few jokes here and there, and many moments of silent prayer. as the surgery progressed and we heard nothing I did have moments of anxiety which were occupied with some pacing as well as other things. Hearing josh was out of surgery and doing well was a HUGE relief. I definately felt relief.
when the doctor told us about the surgery and that he removed probably 97-99 % of the tumor, that was cause for celebration. But in my mind, it only lasted about a minute, until the reality of a continuing war against this brain tumor struck me. I keep seeing all of my friends celebrating about the success of Josh's surgery, and that is what I should be doing.
Praise God....when we heard that Josh had a brain tumor, one of the first things we learned was that it was inoperable. The fact that we moved and changed doctors to another very good neurosurgeon (who was from Vanderbilt in the first place) and that this surgeon looked at it and said, yep...he could and would do surgery...that was of God.
To see the difference between the tumor in the beginning of April to the beginning of July.... that is a matter of 3 months, Josh's tumor grew from the size of a quarter maybe to the size of a TENNIS BALL!!! That is a huge difference. (we are talking 3-D) I don't know if the radiation and chemo made it more possible to operate, what I do know is that God put us in this position in which Most of it could be removed.
This needs to be celebrated, and you are all doing a great job :-)
for me, standing in that room, after only a moment of celebration, my mind quickly switched to recovery mode as well as, what's the next step...how to continue fighting this battle.
Well, I am still in both of those mind-sets, and I won't get completely out of them anytime soon, but I also want to inject some celebration tonight as I have my husband home from the hospital following brain surgery.

Some of you are waiting for word about the MRI, well, this is what the doctor said. There is still some enhancement (this means tumor cells) showing on the MRI, but it wasn't enough that the doctor wanted to open him back up to resect more. Instead, after a couple weeks of healing we will go meet with an oncologist and set up the next part of Josh's treatment, most likely with a stronger chemo.
But that is a couple weeks away, so we won't worry about that now.
Right now, i'm going to stick with recovery and celebration---hearing that the course the tumor was on was going to leave me a widow and single mom at 29...that was frightening. Pray with me that God's plan is to extend Josh's life much much more, and that we might be used as laborers in the harvest.

2011-07-20T19:42:00.000-04:00

Surgery day began at 4am....actually the day before never really ended as there was very little sleep. We arrived at the hospital shortly after 6am and almost as soon as Josh had checked in and hugged his parents he was swept away to pre-op. They told me I could ride the elevator and walk the hall with him, but I could go no further, and as I tried to give my husband a hug and kiss, the "kind" lady who walked us up there said "oh, you'll see him in a couple hours". I was not very well pleased with her bedside manner...but that was the only time of the day where I had that issue.
At 8:30 the board that we were to watch to learn of Josh's status changed to say that he was in the operating room. we didn't hear anything more until 9:45 when I got the call that surgery had started at 9:28.
We had hours of waiting....in fact, it was after 1pm and we hadn't heard anything, so after pacing the room for 10 minutes I finally approached the check in desk and asked if there was the possibility of learning of Josh's current condition. This kind lady called right up to find out for me, and the news was good, they were about to wake him up and soon he'd be in the recovery room. After 15 more minutes the doctor came down to talk to us. We had a little rush around trying to get the family in the room so that we could all hear at the same time.
He called it a "boring surgery" and said that is what you want. It was uneventful. He gestured with his hands the size of skull that was cut out as well as the size of the tumor. From his gestures we have taken away that it was the size of a tennis ball. He explained how they checked his nerves, and they took out a portion of his face near his mouth on the right hand side, as well as effecting his hand. He explained there was some droopiness in Josh's mouth. The Doctor also said that he's pretty confident that he removed 97-99% of the tumor....the MRI that Josh is scheduled to get tonight will tell a little more of the story.
One thing that we learned was that Josh's prognosis SHOULD significantly improve. Improve from what? you may ask. Well, based on Josh's latest MRI from last monday, his doctor would have guessed somewhere between 4 and 6 months....that'd be like...by Christmas. So, with significant improval to his prognosis...what does that mean? time will tell, that is not something we have an answer to right now, it will be based on a number of factors including how much was left behind, rate of division of cells and response to other treatments. Radiation is off the table, but there are some chemo options.
Ok, now you all want to know more about Josh. Josh has exceeded our expectations. We had prepared ourselves for ALMOST the worst case scenerio, unable to take, complete lack of control of the right side of his face and possible weakness of the right side of his body. Josh could talk in the O.R., He had some difficulty speaking tonight when I just saw him, but time will tell with that as well. Josh's face is a little droo py, but overall not as bad as I thought, and other than numbness in his face, tongue and hand (pinky), he doesn't seem to have any major issues from surgery. His blood pressure is a little elevated and he's super tired. He's not as "perky" as he was after the biopsy and I think it will take more time that his biopsy did for recovery. But it was so good to see him. Currently he is still in the recovery room. they do not know if they will have a bed for him tonight. I'm hoping that tomorrow he will be in a room where the kids can see him. But just like everything else, this is a wait and see game we are playing. Please pray for Josh throughout the night.
I'm sure I had more to write, but my crying baby is asking me to tend to her needs now...so that is what I shall do.

2011-07-18T21:30:00.000-04:00

I really wish that I could somehow separate my stress from my kids. There, i just did it again and I ruined the night. I even tried to make sure that they had a nice sending off to bed, songs, prayers, hugs and funny kisses. I allowed Kosette to get out of bed once with the promise that she'd stay in bed the rest of the night. Instead she came to my bed 5 minutes after I turned her lights of with some made-up complaint of a cramp in her neck. I sent her back to bed (as well as James who repeated her complaint) not even a minute later they are screaming, laughing carrying on. I go to there room and find James climbing up the ladder, I use my loud angry mom voice and tell them that I wanted this night to end on a good note, but now it can't because I have to yell at them for not listening. I told them to lay quietly and go to sleep! kosette began crying very loudly. Finally I gave in and went to see what was going on. She "had a bad thought" it took a little bit to get it out of her....her thought was that "we got separated" well how? I asked her "you weren't taking care of me very good and we got separated." I assured her that even though I make mistakes I would always try to take care of her right.

2011-07-17T23:07:00.000-04:00

This morning Kosette came into our bedroom and stood beside my bed asking if she could get up. At first I told her to go back to bed. Our alarm hadn't gone off yet, and she has the tendency to wake up pretty early. Thankfully Josh to a second to look at the clock and found that our alarm was set for 7:05 PM instead of AM and it was already 7:45. We felt a bit rushed running around, trying to get out the door by 8:30. Instead it was 8:50, but we were still to church in time for Sunday School. Josh was able to sit down in the sanctuary with his sister and our brother in law. I was busied taking care of Kassidee's needs. I looked out the nursery window, and there I saw the first of our surprise visitors in the parking lot. Our friends Josh and Holly with their 2 children. By the time the babies were fed and diapered, we walked into the hallway where we saw another friend from LBC, Sean and his girlfriend Jessica. I knew it was possible that Sean would come, since I knew he really wanted, but I hadn't heard for sure, so it was a little surprise for me. As we gathered in the hallway, 2 other friends from LBC showed up, 2 of the "band guys" as I call them, Brian and Dave. I kinda thought Brian might come, he had been saying a lot recently that he wanted to see Josh, and apparently this morning he called up Dave and told him that he was coming to pick him up so that they could see Josh. And then another LBC couple arrived, Rob and Chariss with their daughter. After the group had a while to reunite (several of them were in a band together...4 of them were in our wedding) I was able to get Josh's attention for him to join me in the hallway.
He had no clue why I asked him to walk down the hallway, but as he got closer to where the group was, one at a time he saw these familiar faces....some he hasn't seen for 4 years....some for longer. I could tell right there that he was getting choked up. That surprise alone was enough to make his day, and mine.
Later we headed to the sanctuary for church. There was another family I was expecting, but after the second worship song I stopped looking over my shoulder for a while...I thought maybe they'd gotten lost? or something didn't work out for them to come. (They are good friends of mine, and they did show up after the service and hung out/helped out for a while afterward, Nicole and Ryan and their 2 children)
The service went on. Pastor Art taught on Daniel 1...there was a lot of talk about the babylons in our lives, those that we make for ourselves and those that are not of our making. As the service finished up I know there were a lot of people who were trying to make it to see Josh's big surprise, some were locked out of the church! My mom collected my children, but Kosette was in a bad mood today and didn't want to cooperate. At the conclusion of the final hymn, Josh's dad, Pastor Art, invited Josh up to the stage. At this point Josh had NO CLUE what was going on. I made a dash for the begining part of our surprise as well as the children. I tried to include them as much as I could. We came up on stage and "dressed" Josh in a cap and gown.
Josh's dad told the story about how I began working on detail of Josh's Associates Degree when we were still in Tennessee, and presented Josh with a temporary certificate of achievement until his degree (or diploma???I don't know what you call it officially) arrives in the mail from Johnson. Then he went on to tell the story about how this week...specifically on wednesday night, we began thinking about whether or not Josh had earned anything at LBC. I mentioned this to Josh's dad and he told me that he would look into it---he never told me what came of that, so I was as surprised as everyone else to learn that Lancaster Bible College was awarding Josh a one year bible certificate as well as recognizing his ongoing effort to study the bible and ministry. The President's secretary at LBC broke one of the "cardinal rules" which is, she contacted President Teague while he was on vacation about Josh. President Teague said that if he wasn't away at the moment he would have wanted to come and present this to Josh himself. (I'm really hoping that Josh is well enough to go to this years homecoming). LBC overnighted the official document, as well as an alumni pin, a 2011 graduation tassle and a servants towel. I remember when I graduated, I received a towel, meant to symbolize Christ washing his disciples feet...humbling himself and being a servant.
Josh couldn't hold back the tears.
I am so thankful to everyone who made this possible, for those who helped behind the scenes, to those who recorded this event with video and pictures, to Josh's dad and mom and Deb who really took over most of it so I didn't have to sneak around so much behind my husbands back AND I've been able to enjoy my time with my husband this week. Thank you mom for helping with the pictures and doing so many things I couldn't. Thanks to everyone who came and made this so special---those from Lancaster, and those from Niemonds. you are all so special to us, I'm so glad we could share these moments with you. I was thankful to have Josh's whole family with us today, and to have our church family with us. and I'm so thankful that my brothers and their families came up on friday to spend time with us, even though they had to keep quiet about the surprise.....thanks EVERYONE for not ruining the surprise!
After those things had ended and lunch was over, we had some family pictures taken...3 new members of the family since the last Mott family pictures: Jadin (how horrible is this that I forget how to spell my own nephews name), Kassidee and Jared. Jadin and Kassie are the new babies since the last time and Jared came into the family through marriage.
After photos were done, i was sure Josh had spent too much time in the sun, he's supposed to limit exposure, not only because of his scar and lack of hair, but also because of the medicine that he takes. We were also wiped out! What a BIG DAY! We came home and decided to take it easy for the evening. I regret that it meant our kids missed out on VBS tonight, but we couldn't take a drive over the mountain again today.
Instead we read lots of amazing cards. Josh's card shower is a success (and I'm pretty sure there are still more coming) and one thing I noticed is that only one card repeated itself, and only once! that is amazing considering the number of cards. I'm thinking about what I should do with the cards (ideas welcome) I want them to be available to Josh in a way that with be inspiring to him through the next few weeks.
Well...that's it, that was our wonderful day! I hope to have the video of josh's graduation available in full tomorrow, so be on the lookout!

2011-07-13T23:46:00.000-04:00

"I've got a peace that passes understanding down in my heart, WHERE? down in my heart, WHERE? down in my heart. I've got the peace that passes understanding down in my heart, down in my heart to stay"
I have been singing this song since I was 4 years old, and now we sing it with Kosette. I've felt peace before, I considered the peace that I felt when we went back to college 3 years ago with an almost 2 year old and a baby on the way---I considered that peace beyond understanding...but no, I don't think it was. I have felt the type of peace that God gives you when you follow Him and step out in faith. But I don't think I ever felt "Peace that Passes Understanding"...not until this week.
i hope that you understand when I say that, i'm not saying that I'm at peace with Josh's brain tumor, or at peace with Josh's surgery, this is scary stuff. But in the past few days since seeing the scans and scheduling the surgery, it is ONLY by the grace of God that I am not fretting every moment of every day. God is granting me a peace that I don't understand, someone in my shoes should not be feeling this much at peace with so much looming overhead. That is why it is peace that PASSES understanding. I don't understand it. However, without understanding it, I am so so thankful for it. Because of this peace, we are able to enjoy each other. We are taking the days that we have leading up to surgery to spend as much time with family and loved ones (that we can) as we can.
The newest addition to Josh's medicine arsenal has helped so much. The purpose of it is to decrease swelling, and just from what I see outwardly, I think it's working. Josh has not had the pressure headaches since he started taking it. He does not get tired out AS quickly...the one downside he's seen to it so far is that it keeps him awake at night.
We welcomed Snowball into our family yesterday. The children completely wear her out. Kosette won't put her down. I spend all day telling her that she needs to let the puppy down so it can walk and run and play. Last night Snowball slept all night long...AND SO DID KASSIE!!! That was the first time that Kassidee slept through the night.
A note for anyone who might want to visit Josh post-surgery, We would love to have all of you there. We do not know how long Josh will be in the hospital, we don't know what visiting rules will be, one thing I do know is that Josh will probably be very tired, and not able to talk well, due both to what they are removing, as well as the incision that is being made effecting his facial muscles. So, for anyone visiting, I will do my best to communicate to everyone through this blog about any visiting rules. For anyone who might be coming to the hospital on the day of surgery, if you are coming for a visit, this is not the time for it. I will not be good company. I can be fairly sure of that as we've been through a similar surgery a few months ago, I probably won't feel much like talking. Not sure what I will feel like doing, but to anyone who wants to come for that day and imagines it being a time to chat, this is not the day for you to visit. That'd be fine any day leading up to surgery, and depending on surgery and recover, after surgery. I know that Josh would appreciate even a few minutes of conversation during his recovery, so that would be good then. Me too! after we are past the hard part, then I'd totally be up for chatting. I just want to make sure that my friends understand, I love you all, but even so, on that day I'm anticipating 4 or more hours of sitting quietly, thinking, praying, maybe some pacing. We do have family who will be there and some friends who I'm sure understand the point that I'm making here.
Ok, now that I've said all of that, I really want to go back to the peace. I don't understand how I could feel such peace except that it is a gift from God, and as an answer to all of the prayers on our behalf.

2011-07-11T22:32:00.000-04:00

Most of you have seen the pictures already and heard the news. Josh's tumor did not respond to radiation or chemo in the way that we would have wanted. Instead the tumor continued to grow at an aggressive rate, and swelling ensued as his brain was burned and poisoned by the treatment plan....that's how we treat cancer, burning and poisoning it when it can't be cut out.
Well, one thing we see on the scan is that the tumor seems to have more defined edges, so the radiation or the chemo did kinda kill off the "tentacles" it seems. Now, looking at the MRI, you can see the solid mass. Also, looking at the MRI you can SEE why Josh complains several times a day that his head feels like it's going to explode from pressure. There is so much swelling, his brain isn't symmetrical, instead the tumor and swelling has pushed the center of his brain to the right.
Surgery is scheduled for July 20th (Wednesday) at Geisinger. We will find out what time the evening before surgery.
In this operation, the surgeon will trace Josh's existing scar, and extend the cut upward and downward, curving around the ear. They will be removing a portion of Josh's skull (possibly the size of a 2D tennisball?) and Josh will be completely under...they talked about an awake surgery before, but due to the swelling, it's safer for Josh to be completely asleep. Josh is taking medicine for the swelling, and hopefully it will decrease significantly before surgery.
the surgery itself may last for 4 and a half hours. We don't know the details of how long Josh's stay will be following surgery. There are lots of risks, as there are with any surgery...but to me, when dealing with something like the brain, it's pretty scary.
the main benefit of this surgery is to give Josh more time, we are hopeful that seizures will cease and headaches will go away, but more time is the goal. The Doctor kept looking at Kassidee who was sleeping in her daddy's arms as he talked about time.
Some possible side effects from the surgery. First of all, Josh's speech could be greatly effected, just like it is after a seizure. After a seizure Josh can not form words...not any words. over time he gets some of that back until finally he can talk again, but depending on the severity of the seizure...he's gone up to 45 minutes without being able to talk right. The doctor said this could be the case for possibly up to a month after surgery. He doesn't think it would be permanent...but he can't make promises. When Josh wakes up, he was told to expect the right side of his face to be droopy. That is the section of brain that will be removed. The other side of his brain is expected to compensate and within a couple of weeks his face should look more normal. The third possible side effect that we discussed was weakness on the right side, in Josh's arm, hand and leg. This could be permanent.
So there it is. That's most of what we were told today. We continue to remember things that we've forgotten.
This afternoon I showed Kosette the picture of her daddy's brain and explained that the tumor was still there, but that next week daddy is going to the doctor and they are going to try to take out as much of it as they can.
Kosette tries to wrap her mind around what she's been told. We didn't mention anything about Josh dying, in the past it was mentioned in front of her and I know that caused her a great deal of stress. She's even asked me about who is going to be her next daddy. We always answer her with 'Daddy will ALWAYS be your daddy'. We haven't really said anything to James, he really doesn't understand enough to grasp anything except "doctor". I only cry when I think about my children right now.
God gave us everything we needed to handle today. We saw the scans, and I was not surprised. I took a deep breath because I knew as soon as I saw it, but each of us was able to listen to the doctor and understand what is going on and how important surgery is. We've heard a lot from Brain Tumor Friends about how important surgery is. I THINK we are at peace with the decision for surgery. Doesn't mean we aren't scared, we are very scared. But I'm pretty sure we are on the same page that this is the best option. ,
Before we had the chance to talk to our family, we ran into some good friends at the hospital. God brought us across each others paths at the right time. We received hugs, words of truth...love. For me, it was exactly the comfort I needed.
Other than a little rest in the afternoon, I've been going going going all day. So now I am ready for some rest. Thank you all for your prayers today and we covet prayer, it's the only weapon we have against this, and the God we call out to is the only one with power to defeat this.

Big day tomorrow, Kosette gets to pick up her puppy Snowball. We will also be hanging out with Josh's brothers family. so it's a big day and we have to get our rest before then.

2011-07-08T16:31:00.000-04:00

Today I'm crying,...a baby girl named Simi may be leaving the arms of her parents and joining the family in heaven very soon. (Check out http://www.caringbridge.org/visit/georgiasimigoodwin) She was diagnosed with luekemia at 7 months of age. As a mommy, the pain of watching a baby go through such pain is heartbreaking, and the pain of losing a child...I can only imagine. it's hard enough seeing a daddy with cancer, knowing that barring a miracle, his children will watch him die. It's hard enough to think that at 28 he's been handed a death sentence. When thinking of getting that death sentence for a baby, my heart is broken.
Dear Lord, please wrap Simi in your arms, please allow her to have waking moments with smiles and feeling the love from her parents. Lord, I pray that it might be YOUR will to grant her life on earth, and that you would work quickly in a mighty way. And if it is your will to end her suffering on earth, that you would surround that family with comfort.

2011-07-06T22:11:00.000-04:00

So, what is it about facebook that is depressing? i think that other people have felt it from time to time. It is a different world, where people don't speak face to face, instead they write whatever they think.
I know as a stay at home mom, Facebook was such a nice break, to "interact" with friends while "trapped" inside your house playing toddler games.
About a year ago, I stopped playing the facebook games, so facebook had a little less draw, but I still loved getting on, commenting on peoples statuses, "stalking" some friends, adding my own status to the list and seeing what feedback I might get. I love looking at pictures too.
When the diagnosis came back terminal, I still used it as a tool to tell people a little about what was going on, but then I began hating to read what other people would write. They would write pleasant things about what was going on in their lives. Or they would write about the bad things that seemed trivial. A friend of mine, whom I met at the Thompson Cancer Survivor Center, told me that she couldn't stand facebook because of the people, so she just quit it. At first it was EVERYTHING people would write that I couldn't stand. Then it was the "I understand" comments that came out, and i wanted to scream, "HOW COULD YOU POSSIBLY UNDERSTAND" But you know, it is a learning experience for myself and for others.
I don't get so upset anymore. I appreciate the comments, the responses that I get from people. more than anything else, right now I get depressed because I can't write about how depressed I am. I know that nobody wants to hear about that all the time. How many people would still want to be my friend if I wrote every day about depressing stuff? I can not even write the stuff that I think, and the things that I continue to think to write. I can't write it for the reason stated above, as well as the fact that I can't give it the words...if I write the words it seems that I'm making it real. I also can't write it because I can't let Josh know that I think these things.

Ok....another thing depressing about facebook. People say silly things sometime. not silly -ha ha- but silly-doesn't make sense or just wrong. Oh well, we do that in person too. And I can't even count the number of times that I asked Josh if i said something wrong because I just wasn't sure if I was okay.

alright, I don't know what the point is of writing this, but i just want to write the things I'm thinking since so many times in the past month I have not written what I have thought.

2011-07-06T21:20:00.001-04:00

I don't write as much right now as I used to, and I just realized why....many times, facebook depresses me. Some people make the decision to cut facebook out of their lives, and you might wonder why I don't. Well, for me, it's not a great option. i have some really good friends that I couldn't keep in contact with nearly as well without facebook. So i have to deal with the depressing to get to experience the joy as well. hmph....
so today I called to the bank about our pre-approval hopes of a loan and learned that they don't think we are good candidates for a loan. They never asked us about any money that we might have for a down payment or for closing costs, which we do have. We had some amazing people put together fund raisers and you wouldn't believe the outcome, it was what I thought to be enough for a down payment, especially when dealing with an auction.
the house we were looking at is not completely out of the picture...at least not until 12:15pm on Saturday when someone bids above the amount that we currently have in the bank. I'm not 100% sure on this, but I think that we might still go to the auction...I mean, how horrible would that be to not go and find out later that we could have afforded it.
We have never been 100% set on this house either. We like the location and the land, and the house is liveable. This is a house that we could have seen ourselves living in for a very long time, I could see the kids as teenagers in this house, but the house itself didn't have any hold on us.
The most disappointing thing is that the bank just said "no". They said if there was a second income that we might have a chance. They didn't seem to consider that we've paid off all of our debts, we were never late on a mortgage payment, that we have a down payment... So that was disappointing, not that it means this house is off-limits, but that we don't have any homes to look at or for. They did suggest a rent to own situation (but I don't see how that is different from making a down payment?).
Several people have mentioned renting. Well, for us, a renting situation would have to be a PERFECT situation. I'm not completely against it, but I'd rather have my money go into an investment for our future. See, looking a few years down the road and I may be a single parent of 3 incredible children. Before that happens, I want an investment---I want moments of dancing in the kitchen with my husband, I want laughter to fill the halls from tickle-attacks, I want to sit around our dining room table with our heads bowed in prayer, I want an investment of memories. And a few years down the line, should we face that loss, I don't want to have to leave that home, I want to own it.
We have been looking for places that are much less expensive than traditional houses for sale because of my desire to have as much of it paid off as soon as possible. It's got nothing to do with Dave Ramsey. Though I appreciate his teachings on finances, and am thankful for our lack of debt, I want to have this situation, a house paid off as fast as possible, for the security of my family.
I don't want my husband worrying about his family as he faces the war against brain cancer. We want a place to "completely and fully live as the Mott clan" (thanks Abigail). The dynamics of our concerns are different than most people reading this. (thanks Lisa)
honestly, i don't know what is right for us, and I'm thankful that we have a God who does and who provides for us. While I am disappointed that we can't count on the traditional route, I trust that in time we will find the right situation for us, I'm not so sure that this house for auction couldn't be it, but I've got no stake in it.
We have tried considering modular housing as well (manufactured homes) and walked into a place today that we thought was a modular housing sales place...it wasn't, they talked to us about building our own home and walked us through their beautiful model home and spent about an hour talking to us...we could have walked out of there after the first 10 minutes, but neither of us wanted to be rude. It was neat thinking about building a home, but that doesn't look like a reality for us. We are still interested in learning about modular homes, but have no clue where to go talk to someone.
Okay, okay, other news. Snowball is 8 weeks old on Sunday, so we can pick her up sometime this coming week. That will be exciting for the whole family.
Monday is Josh's MRI. This is a scary one...although I think all from here on out, since hearing the words "brain tumor" are a bit scary. This is the first MRI following radiation and chemotherapy. This will tell us a bit about how successful treatment was at putting the tumor to sleep. This will tell us if Josh is a candidate for the clinical trial, this will tell us if brain surgery is in the near future. On july 3rd Josh had 3 seizures. He's continuing to have at least 1 seizure every day.
...
As I was driving home from Selinsgrove today I began to daydream about living on a farm, raising animals for a livelihood.
...
I know that lately I've been "leaning on my own understanding", I've been trusting myself too much. I don't really know how to say this, but I ask for those of you who have chosen to be my prayer warriors to please pray for me.

****this is added, currently we are in a living situation that we could be in for a short while. The only reason there is any "time limit" is because we want there to be one, because my husband is sick and could at anytime get worse, we want to take advantage of the time that we have with him having full control of his mind and actions. I didn't rule out renting all together, but as I said, the situation would have to be perfect. We are not living in an area like Lancaster, the area that we are looking to live is way more out in the country. We would consider a rent to own property---BUT SOMEONE EXPLAIN TO ME THE DIFFERENCE BETWEEN RENT TO OWN AND HAVING A DOWN PAYMENT as far as the bank is concerned...renting to own is paying the down payment over a period of time, so what makes the difference to the bank?

2011-07-02T16:38:00.000-04:00

Well, we've been running around the last couple days, Friday I was off to Lancaster County with 3 kids in tow, my dad came along to help with driving and keep me sane :-) Josh had breakfast (and lunch) with his dad. It's good for him to be able to have times like that with his dad, or his brother, or other special people in his life.
The kids and I had a play date, with 4 other women from LBC and their combined 9 kids...12 kids in all. I hope that we can be involved in more of these play dates.
One thing I thought about following this get together is this...it can be hard to talk about meaningful things. It's so easy to talk about things like the weather...but do we really need to discuss the breeze and the temperature in 3 different ways? I know that when you add kids to any equation, attention must be divided in order to provide proper supervision, but how nice would it be to actually take the time to hear from each individual about the things that really matter the most to them. For each person to have the time that they need to share what is on their heart. We all need to do that. We all need someone to talk to who cares about what we think, and what is happening. I know that each of the ladies I was with would have cared about what I would say, and I know that I would care about what they would say...but it's so difficult to have those types of conversations.
In the past few months I feel as though I had just gotten to that point with some friends in TN, where we wouldn't have to talk about the weather, or whatever easy thing there was to talk about, we just sat down and immediately could talk about things that we hid from the world. We could balance the heavy stuff with the light-hearted joking, it was a great balance. We have come back to an area where we have lots of friends, but we have to find the situations which allow those types of conversations, the comfort level needs to be re-developed. It's great when you can have friends that even though you haven't seen them in a long time, you can pick up right where you left off with having a great time with them. But I feel as the the changes in our life are so big that we have to work up to that again, even with the best of friends. These are the people that we've always talked to about the important things in life....but what is important when you are 13 is different from 18....which is different from 22, and 25, and much different from when you are handed a terminal diagnosis.
Anyway, my head has been spinning so much lately that I don't know if I'm saying this right, but what i'm trying to say is that we need to make more opportunities to have those meaningful conversations.

2011-06-27T11:18:00.003-04:00

I don't know how to do this.
Josh is exhausted easily, many times it's when he over exerts himself that he has seizures. He gets so frustrated over the impact that this tumor has on his speech. I get scared. Josh spends a lot of time listening to music, he shares lyrics on Facebook. Music can be a powerful tool, and for Josh it seems to be his release.
I want to plan things for us to do, I want to keep the kids happy and active, I want to try to be more healthy and active myself. ( I have gained 20lbs since February when we heard the words "brain tumor") I want to do things that allow us to enjoy each other. I want to create memories. But it's so hard to make these types of plans and then find out that Josh is really tired, or really not feeling well. I want to take care of him, I want to let him rest. I also want to be with him, i don't want him to be locked away in the bedroom while I'm up and around, I'd rather lay with him, or have him lay his head in my lap or something like that, be with him while he rests, but that is not very practical when you have 2 kids running around needing to get energy out and a baby who needs to be held and fed and cared for. I feel guilty for forcing Josh to participate when I know that he's really not feeling up to it. I wish it was as easy as giving Josh a full day to himself to rest and relax the way that he needed to and then the next day having him be active and involved. But the tumor doesn't cooperate like that, he can spend a whole day resting and then the next day be tired by 10am.

2011-06-24T23:08:00.002-04:00

We saw a house today that has the possibility of being our home. It is an older home, with a nice sized yard, a 1 car garage and another outbuilding (shed). The house itself is like a winding stair case, with rooms along the way. Almost everytime you leave one room you climb a few more steps and there you are in another room. It definately has the potential to be ours...there are some cosmetic things we'd want to do, but it is liveable the way that it is. We hope to have some people with more expertise go through and figure out what would NEED to be fixed up. It's exciting to think about a new home. This house is only about 3 minutes drive from Josh's parents house. This is good, in case of an emergency, to have people so close. (2 minutes from his brothers apartment).
Do I think we will get it? i don't know. It will come down to if anyone else is interested, I don't know what kind of bidding war we could get into...but the house goes to auction in two weeks on Saturday (July 9th). The man who grew up in this house and showed us around mentioned that he didn't think there would be any interest in the house and if it didn't sell that he would bulldoze it. I really hope that there is no other interest in it, and that we get it at a low price and have the ability to borrow more than our bid in order to do some work on the house before moving in.
The bank told us that in the case of an auction, they cannot loan more than 80% of the appraised value of the home. We were told that he thought the appraised value was 80,000, but we need to be sure before we go to the bank.
So this^ is what we did today, we appreciate prayers.
Also, Josh is becoming increasingly frustrated with his difficulty speaking...i am so worried that it mean things are becoming worse.

2011-06-22T23:12:00.003-04:00

I feel as though I have been absent from the world wide web since our move...I know this is not the case, as I've checked in several times...sometimes even several times a day. Well, I guess it's about time for an update.
We are moved to PA and official residents of my homestate as of today...oh, and my drivers license says "Kristin L. Mott"! first time ever! Not a great picture, but when is a drivers license picture good? I tried to smile really big though. Tomorrow we have some more paperwork going in, hoping that we can get insurance stuff figured out soon, I'd love to have Josh approved before his MRI on July 11th (I think) otherwise the bill will fall to us.
this MRI is big stuff....his first after radiation/chemo treatment, what this shows will determine treatment as well as whether or not Josh will be able to participate in a clinical trial. There is a second clinical trial that we are going to hear the details of soon, the thing that scares me about that one is that I don't think he's allowed to undergo standard treatment...but then again, if it would work, it would be what we would want....so I don't know, not going to make any decisions before we have all of the information.
One new developement is that the doctor that we met with upon our arrival to PA, well he says that he would do surgery. He believes that he will be able to at least partially resect the tumor, allowing Josh to live longer. It would be an awake surgery, and depending on what the MRI shows, it may not be something we should resort to right away.
Josh's seizures have started up again, he's having about 1 a day. I think I'm noticing other things, but I don't want to mention them sometimes to Josh, because I know it frustrates him so much that his brain doesn't want to work right. When Josh is tired, his words are slow, sometimes slurred. Sometimes Josh forgets things that I'm not sure if he should remember....how many of you who have been to our beavertown home, OR who have been to Josh's parents home, would remember what color either home is? Today as we were driving and talking Josh mentioned that the house we are staying in is pale yellow....let me tell you, it is not, it's more of a gray or blueish....the thing he said was well, maybe it's his parents house he is thinking about...one of them is yellow. Yes, one of them is yellow, his parent's house, a house that he's lived in and visited regularly for over 10 years. I don't know if this was just one of those things that happens to everyone, or if it's a symptom.
Certain things are getting harder to know how to react to. My dear husband started teaching me to try to stay light-hearted about things. He has done this by joking around about everything, including his tumor and it's symptoms. But know...I just don't know, we don't joke as much about it, sometimes we kinda try to and it falls a little flat.
One of the hardest things (emotionally) so far about this move is that everytime we head over the mountain for church to see people, I start to feel nervous. Why do I feel nervous? I think it's just that emotionally I don't know what to do, and that's what comes out. I've had so many hugs, some kisses, kind words or prayers, and tears...not mine. I have watched other people cry for us. I don't know what is wrong with me that I don't cry.
...
So, we've got lots of paperwork done, it seems like we've been working on it for weeks...we kinda have been. Now that we are done with that, what's next? We are looking at houses for sale everywhere we go. There is a house we might be interested in that we will get the opportunity to look through on Friday, we shall see what comes of that. So, finding our own place is on our list of things to do. we also need to start a new routine, we've been running around for 2 weeks...We may have a couple more days with running, but hoping that by monday we can begin a new routine with the kids, more outside time, maybe some other kids time.
Oh, anyone curious about Kassidee? well, she is such a joy. she had her first "exersaucer experience" just under 2 weeks ago, and she loves it! She bounces around and squeals, she chews on all of the teething items (she's teething!) and she jabbers a lot. She always reaches out for whatever we have, and most of all, she reaches for our faces, she will put one hand on each of my cheeks and just talk to me. We have started some fruits with her, bananas and then applesauce. Neither began fits of vomitting like the rice cereal, so that's good, but she's still learning to swallow.
Kosette and James do just about everything together. They are stuck together, and they usually make the best of it. I hope to find productive things for them to do with their days.
And me...well, I've had vertigo for a week, saw a doctor and was told it's from allergies. I've taken medicine and done exercises and I'm just hoping to wake up tomorrow without the world spinning around me, I'm getting kinda tired of motion sickness.
Thanks everyone for reading my blog and "listening" to me go on and on.

2011-06-02T22:31:00.002-04:00

A week from tomorrow we will be packing up a truck with all of our things, than start the journey back to Pennsylvania. I'm excited about this, but also a bit nervous. Not sure I can explain exactly why I am nervous.

We have so much to do, many details to work out, things that can't be done before our move. We need to finish packing our house up. There is just not enough time to get the house ready AND see everyone who we want to see and who want to see us. We do have a special event going on Saturday evening on campus that should be a nice evening and chance to see some more people and say some goodbyes. And there should be some surprises for Josh. We need to say a HUGE thank you to Abigail M....she has been so amazing! And she's taken on a lot over the past couple of months to help our family and to make life as good as can be. Abigail, I don't know if you will read this, but I know that you have in the past, so I want you to know that you have blown me away with everything that you have done and are doing for us. I know you don't like the attention of a thank you, so you are probably getting embarassed or something, but oh well, please accept my thanks and know that you are so very appreciated. I bet you are ready for a break :-)

My parents will be driving in soon to help with the packing. I'm so glad for the help.

I saw some pictures of the rose garden that is a block away from my parents house....i am happy to have a portion of our summer spent in that town, where Josh and I spent our first 3 years of marriage.

kosette has named her puppy! Snowball is the newest member of our family and we will meet her in a few weeks. We've seen pictures and she is so cute!

2011-05-29T00:55:00.002-04:00

Everything is moving very fast right now. about 10 times a day I think about things that I would like to share with all of you. Thoughts I think, things I see, conversations I've heard...but for some reason it's been getting harder to write these things out. I think through the entirety of what I want to say when I drive or such...but when it comes to writing for the world to see, somethings been stopping me lately.
And with how fast things are moving right now, our emotions are trying to play a little catch up. For the past week or two I've been playing hide and seek with my emotions, kinda in the way that you play with a little kid that you have to watch, but might be a little annoyed bye. "You hide, I'll count to 100, 1....2....3...." and you trail off as they get farther away until you stop counting and let them hide for a while. Usually it's a sibling that you play this way with, but for me, I think it's my emotions. they go hide, expecting me to come find them, but I occupy myself somewhere else and "forget" to go looking for them until a substantial time has gone by and they come find me with a vengence.
Well, enough about that...
We are packing, we still have so much more to do, but I think we are doing a good job, and we had some help with watching the kids today so we could focus and accomplish more.
We got to see our former neighbors, the kids were excited to see each other and i was so glad to have my friend here for a little while, to hear about her life and cry a bit about what's been going on. I'm so glad that we've had them in our lives, even if it was only for a few years.
Our move is becoming more and more real, my parents will be here in less than a week to help us get ready to leave. Josh has 7 more treatments left. He is doing really well for going through Chemo and Radiation, but he does have his bad times, feeling sick, headachey and stuff. He's dealing with the loss of his hair as well as the idea of a short life.
I don't know how we are going to get through this, I don't know how soon or how long it will be until things begin to change. I just want to be with my husband and enjoy him and our family.

2011-05-19T23:23:00.002-04:00

Josh will be sporting a new look...today as he trimmed his hair (buzzed with clippers) a new discovery was made. The area that is directly in the line of the radiation is losing hair. I didn't really notice it until today...he's over halfway, but still has 13 more treatments left, so we have no idea how much of his hair will be effected.
Anyway, Josh's new do is a mohawk....he's done this before, so it's not completely new

2011-05-18T19:08:00.002-04:00

What a crazy week this has been! We've been all over the place and haven't had much time at home. On one hand, I'm glad for activity...on the other hand, I miss being home.
I've been pretty down lately, that's made it hard to write anything for other people to read, I'm sure you don't all want to read about how I'm feeling like that. So, even when I think of something to write I convince myself that I shouldn't.
It's true that I am sad about leaving our friends here. They have been seeing us through this since everything began in October. The last couple of days it seems that my focus was on the sadness of that. Last night in my dreams, my thinking got turned around. I was dreaming about all the good things about our move, the people we will be moving close to, the family that we've been missing...cousins growing up together...I woke up thinking about the good things about our move.
Today was a long day. It was supposed to be Josh's day to rest at home, but our baby girl has been sick with a stomach bug and it just exploded after Josh's treatment today, so we were sent to the ER for I.V. Fluids and some testing to make sure Kassidee was okay, she is, was just dehydrated from the virus. She's not quite as pale now that she had 4 hours of fluid being pumped into her.
What am I looking forward to? Having parents nearby for whatever needs arise...for my children to get to know their family better...to watch the kids grow up with their cousins as their best friends...to meet my new niece/nephew and see my brother and his wife welcome their baby into the world...to get to know how marriage has changed my sister and her husband and get to know them more as a couple...to see Josh reconnect with his twin brother on a regular basis...to spend more time with my little bro and his wife and child....all that amoung other things.
Well, now that the kids have finished their dinner, it's bedtime!! Let's hope they fall asleep fast!

2011-05-17T10:55:00.002-04:00

I'm not sure if it's the interupted sleep...or the circumstances, or what it is,...but today feels like an emotional day for me. Not emotional as in crying all day...i don't cry much right now. But I feel down, and i keep snapping at Kosette. Why is it always her that I snap at?
I've also been having a hard time just writing anything.
The doctor we saw yesterday said that he thought we were handling everything very well. The kids did an excellent job for such a long day in the car and at doctors. I loved watching Josh entertain them as we waited for the doctor, first with a national geographic magazine, then when he ran out of pictures he became "doctor dad" and performed surgery on their bellies and legs and arms.
We talked to the doctor about the clinical trial we wanted to get Josh in and what his thoughts were on it. He said that although there is not much science on it (yet...hence clinical trial) that if he were in Josh's situation he would do it. Because of the fact that it does not take away from standard treatment, but goes along with it, it can not hurt. so we need to get that paperwork done.
While driving in the car one day last week Kosette asked "mommy, when I grow up, who is going to be my daddy?" There was a pause "because daddy is going to die, remember?" I told her that daddy would always be her daddy, no matter what.
We were blown away on Saturday by the kindness of so many strangers, who raised money for us in a Softball tournament.
I think that was the day that the sadness of leaving hit me. We have some very good friends here...I realized the other day that after moving to TN, it was the first time that I made friends as an adult. All of my other friends I made when I was still a kid (20 and under)...the friends we have here are the first friends that we've grown close to as adults. And the community we have here, we won't have anywhere else. That's my favorite thing about TN, the community. I talked to my mother in law about this, she's moved several times in her adult life and she said that every place has something different that she would miss. PA is home, and we are glad to be returning home and to family. As far as everything that we've been through here...finding out that your husband has an inoperable brain tumor...if I couldn't be with family, this was the next best thing.

2011-05-09T16:52:00.003-04:00

I'm just too tired to post.
tomorrow is day 10, and officially the end of the 2nd week of radiation and chemo, Wednesday starts the 3rd week.
Only 4 more weeks to go. As far as radiation and chemo go, that's a lot.the weekend break from radiation helps a lot with josh feeling better, but with 5 straight days of radiation each week, he feels more and more effects from it as the days pass.
As far as 4 weeks until our move...that's rather quick. To think that this stage in our life is over in 4 weeks. That's big stuff.

i've had some questions about why we are moving...and let me just put it plainly. My husband was diagnosed with a grade 4 glioblastoma, (brain tumor) and told that he might have 2-3 years left...to complete his education he would need 3 years. So, this would seem kinda ridiculous to spend the rest of his life to get a degree that he wouldn't have time to use. So Josh is no longer a student, and seeing how we live in student housing...we need to find a new place to live. then there is this fact, we are in Tennessee and our family is in Pennsylvania. If you were told that you had a limited time to live, wouldn't you want to spend it with the people you love? (Some of you shouldn't answer that, and we do love many people here in Tn as well...but we need family) We need the support of our families to get through what is to come, whatever it may be.
Ok. I don't know how well these thoughts transition, once again, i am very tired and I want to just go to sleep.

2011-05-04T18:27:00.003-04:00

Yesterday was a really bad day. I think that everything just started avalanching on Saturday. Saturday we had a day with a lot of emotion dealing with thoughts of the kids growing up without their daddy. Then Sunday there was a lot of not feeling well going on, mixed with some misguided comments. Monday wasn't horrible, but it wasn't great, just lingering feelings...and then Tuesday stress, fatigue and emotions got the best of us. It seemed like a horrible day and some people got caught in the cross hairs. I was ready to curse. i am sorry about hurting people's feelings.
Nothing about this is easy.

Well, today,....today is a day when we can feel God's love. To have a day like today really helps us get through the week. First of all, dropping the kids off at a friends house for the morning, someone we know they'll have a great time with. So already less stress. We get to the office and are told that they are backed up. But instead of calling Josh in later than usually, they got him in 10 minutes early! So we got out of there really quickly. Got some chick-fil-a and picked up the kids for lunch. naptime....I got a good nap, Josh played some video games. When the kids got up Josh took them right outside so that I could continue to rest. That was so sweet!
There is this very sweet young lady, Shelby, who has watched our kids several times over the past couple of weeks to help us out. It's amazing, we've never really used a babysitter like this before (but definately will be looking for 1 or 2 girls in PA who would want to be regular babysitters for us). She came and picked up all 3 kids to take to the dining hall for dinner and give me and Josh a break. I love that she loves our kids, and I feel very confident in her baby and kid caring skills. The kids like having these special outings with her too! Well, they left and a good friend brought us some burgers and sweet tea....so josh and I are getting to just relax. We had a tickle fight....i'm sorry to say that Josh won. I have not laughed that hard in a LONG time :-)
We have so many people calling out to God on our behalf, and I know that He is hearing those calls and responding, right now, just giving us the little things that we need to get through the day.
Josh and I have been searching online for homes. We know that it's unlikely that this search will come out to anything. But we've seen some that look nice online that aren't super expensive (mostly in Thompsontown)...who knows what our housing situation will be like. I don't know what we will qualify for. I just keep praying that God will get us into a stable home...a place that we can make memories, where our kids can have all of their needs met, and a place that we are there to stay. That's my hope. To have a home that we can live in with Josh, and whenever the day comes that we lose him, that we can continue to live there with no worry of losing the place that we created those memories. We hope and pray that our time together is much more than the doctors think.

2011-05-03T16:37:00.003-04:00

I'm usually a pretty good communicator, but I guess lately my communication skills are in need of some adjusting. It's not helping that I think I'm in the anger stage of grief. I've read up a little on the stages of grief to try to understand myself. After hearing the news of Josh's diagnosis, I literally could not cry for weeks. I felt like crying, my insides were all in knots, but tears did not come, and then a numbness overtook me. This I believe was shock. Finally a day came when the tears began and they didn't stop...for days it took very little for tears to start flowing. Now I'm back to where my insides get in knots, but more than that...it just doesn't take much to set off my anger. I'm angry that this is happening, I'm angry that I can't do much, and I get angry that other people just don't understand. I get angry when people say things that they don't seem to think too much about.
Life is out of control right now.
Today was "family day". I named it this in hopes that it'd be a great day for the whole family. We all went to the doctor together, they were running 40 minutes behind, no big deal...then we went out to eat all together. After lunch we went to see "Rio" in 3D. During the movie James ran around the theater for the last half, but there was only one other person in there with their 2 year old boy, so it wasn't a big deal. This day doesn't sound bad when you just have these facts. But even so, it was not a good day. I hope the kids only remember the good parts of today. James loves going to the "Movie-feeter", so that in itself was good for James. Kosette danced. So that was good.
i have more to say but also have fighting children. So I should go.

Sometimes I want to say "don't tell me how to think"

Prayer and Petitions

2011-05-01T12:46:00.003-04:00

Hebrews 5:7
"During the days of Jesus' life on earth, he offered up prayers and petitions with fervent cries and tears to the ONE who could save him from death, and he was heard because of his reverent submission."

Many times people tell us that we just have to believe....believe that God WILL do a miracle and then God will. Basically that is what it sounds like, as if what I do creates that miracle. Um, no. (not saying this is what people are thinking when they say that, but it's what it SOUNDS like sometimes). God deciding to do a miracle for us, that is up to Him.
Josh and I believe in "the One who could save him from death" we believe that God has the power, the power is not in my prayer, nor in my belief, the power is in the hands of God himself! We pray fervently that God would save Josh. We petition for rescue from this brain cancer, and we want to be in reverent submission, like Christ.

What is wrong with me that i take things so negatively??? Ugh.
When I hear someone say "just believe" honestly my thoughts go to this pamphlet that we got at a doctors office for "healing touch" it's a nurse who uses positive energy for healing purposes. Something about that just creeps me out. It's this whole idea that positive thinking is going to solve all problems.
I don't believe that being negative solves anything, but I think that the worlds beliefs that we all have the power kinda creep in here and there.
There is ONE with power, He is the creator of the universe...We will pray and petition Him, and ultimately trust Him with our future. We believe that the "power in prayer" that people always talk about does not come from us, but from the one that we pray to.

2011-04-28T09:08:00.004-04:00

Update on things:
Yesterday was day 1 of radiation, the begining of 30 days of radiation (translates into 6 weeks as they do not do treatments on the weekends) and 42 days of Chemo.
Everything seemed fine at home as we prepared to get out the door, as we drove to the doctor there was a marked difference in Josh. He was tired, but I believe it was the stress and the reality that this is happening that got to Josh, and it made it impossible for him to deal with the children, whether or not they were behaving.
The treatment itself was 20 minutes and was similar to receiving a scan such as an xray or MRI (though not as noisy as an MRI) We don't expect the side effects to hit until next week, one of which is fatigue.
It won't help if Josh doesn't catch up on some sleep, which we were hoping last night would be. Instead we were surrounded by thunder and lightning and hail and tornado warnings. Josh stepped out onto the porch during the hail storm. It was bad, huge hail stones that did damage to many vehicles around campus, with lots of wind. After that we headed to the EAC (a safer building on campus) to join the other families with children who were huddled in the hallway. We spent a little over an hour there, and from what I hear we probably should have stayed there for safety. When we came home and tried to sleep through the weather, James couldn't sleep, so Josh ended up in his bed for most of the night, not sleeping well.
We are getting ready to head out now for Day 2 of chemo/radiation. Today some neighborhood friends are watching the kids.
i'm hoping that by next week we can set up a schedule for childcare during the treatments. i have wednesdays covered so far! Anyone available fridays?

I forgot to mention that the day did get better after the appointment in the morning and after a nap, I'm hoping that today is not a stressful day for Josh

2011-04-25T22:57:00.003-04:00

Today's life lesson for Kosette came from the Chic-fil-a play place. there were other children playing there and Kosette tried befriending them, she tried to play with them and laugh with them. Well the girl didn't like this, and was "snooty" with Kosette. I learned why a few minutes later when she ran out to her mom and said that this girl was trying to talk to her and she was a stranger. Well, Kosette didn't take this well and found a corner in which to sulk. the corner, however was right in the middle of the play area so the children were continually passing her. Kosette sat there all sullen. i tried to coax her down to talk to her but she just wanted to sit there in her sadness.
After leaving Kosette began asking "why did they call me mean?" and tears filled her eyes and her bottom lip stuck out and before I knew it my heartbroken girl was sobbing.
I tried to explain to Kosette that these children did not know her, and that people who know her do not think she is mean. This is where my own life experience came in to play. (i hope this doesn't embarass anyone.) Have you ever misjudged someone based on first impressions or maybe over a few different times, but based soley on what you see. I've learned that what you see is not always what you get. I told Kosette that when I met her aunt Jocie, I thought she was mean (maybe not mean, but I'm explaining this to a 4 year old) and that it was because i didn't really know aunt Jocie at the time...she was sad, but I thought that her sadness was meanness. And if I didn't get past that and get to know aunt Jocie that Kosette might not know her very cool auntie. Kosette remembered coloring turkeys with aunt Jocie and was very glad that mommy got to know aunt Jocie.
I also told kosette that just because you don't always get along with someone, or always agree with someone, that doesn't mean you shouldn't be friends. Once again from my own life, some of my closest relationships have had times of HUGE "fights" or disagreements...but they are great friends. I did however tell Kosette that if someone is ALWAYS mean to her, that's someone that she should stay away from.
So that was todays life lesson.
my lesson, as some of you already know, is to stay away from tear-jerker movies. We just finished watching Marley and Me and I spent the last 5 minutes in Josh's arms, my face planted in his shirt, sobbing, with lots of tears and snot. It was not pretty. Seeing the end of the movie, with the dog on his deathbed, and the little boy watching home videos....I lost it completely. How can it be that the doctors are telling me that my strong, young husband is dying? That there is something inside his brain that is going to kill him....and how can i handle watching him die? how could I let go? Josh looked at me and said "I'm here right now" and it's so true that right now is all anyone has....but at 28 years old you aren't supposed to think about your "time-limit".
my children don't even know what "dead" means.
I know, people tell me all the time that I need to keep looking up, and I know that some of them mean look toward God, and I am doing that....but the idea of keep looking up meaning to stay positive....I just can't be that positive person all the time.
There are blessings to knowing that your time is limited...you try to make more of each day.
Ok, some advice from my side of things....if you don't have life insurance, get it now! Also, talk to your kids. don't talk AT them, but TO them. They may understand more than you think, be the teachers of your children, don't leave it up to other people to do that for you. Umm...yeah, and make each day count as best you can.
Oh, and it doesn't cost anything to laugh.

2011-04-24T08:14:00.001-04:00

what a miserable night, head pounding, throat aching, sinuses congested, ears popping, body aching. Oh, and the medicine I took was "non-drowsy"
thankfully the kids and Josh seem to be feeling much better.

2011-04-23T16:36:00.002-04:00

Sometimes I think I must be driving everyone else bonkers with all of this "doom and gloom" talk of mine. There are very few moments that go by that I don't think about our situation. So, let me tell you about some great things that have happened recently, moments and memories that I hope not to forget.

Over the past couple of days I have left the house on 3 occassions without Kassidee. This is super new to me to leave a baby at home with Josh so that I have the freedom to run out quickly. I guess in the past if someone had to run out real quick it was always Josh and I'd stay home with the babies. Well, with this, our 3rd baby, Josh is finally getting the opportunity to take care of her himself a little. Today when he was holding her, she had the cutest smile and kept trying to eat his shoulder...it was funny how she would rush and attack his shoulder.

Another great memory is the opportunity that we had to stay out REALLY LATE (as a parent, this doesn't happen often) around a fire and enjoy the company of friends into the wee hours of the morning. The next day several of us had to wake up early to care for children and get to appointments, but even though we may have been dragging, I don't think any of us regret the time that we spent together.

I am sad that we are missing out on more opportunities due to illness (kids) and allergies (adults) but I am hopeful that we will be on the mend soon and able to make many many more.
Okay, need to go take care of the kids now. James is so cute, wish you could hear him talk, and Kosette is growing in knowlege every day

2011-04-21T22:55:00.003-04:00

tonight might be hard to fall asleep. Today has been such a slow moving day, with Kosette sick I spent most of the day cuddling with her with lots of time to think. I don't think that what is on my mind is wrong for me to think, it's just not the good stuff that you want to think about. I'm hoping for a better day tomorrow.
Here is my latest thought process...From the several doctors that we've talked to and from the research that I've done, the treatment plan that we are currently undertaking for Josh is the best for him. He cannot have surgery at this time and he's not currently a candidate for gamma knife---a doctor who specializes in this treatment said that the radiation Josh is about to start when grouped with the chemo is a much better choice for him then trying any gamma knife at this point. In the future with recurrence gamma knife or surgery may be in the cards again. Also, something that you may not know if you are not researching this yourself, but there is no cure for grade 4 glioblastoma, at least not yet. Brain tumors are highly resistant. So the goal of treatment is to prolong Josh's life. Of course the ultimate goal would be to cure him, but as that doesn't seem possible yet, the goal of treatment from the doctors is to give him the best and most time that they can. There are new devices that the FDA approved for people with recurrence of tumors after radiation and chemo, and that will be something for us to look into in PA later on, first we need to get through this. Knowing all of that, we pray that God would bring healing, because we know that only He can.
I also pray that we would see God's leading and not waste our time.
People ask us all the time about how we are doing...this is a hard question to answer. Most of the time I am numb. Sometimes I'm asking "Why Josh?" or "How can we get through this?" I cherish each moment that Josh exchanges special interactions with the children. I worry about the treatment, I worry about moving, I worry about insurance, I worry about housing, I worry about the kids and my husband most of all. We are trying to be an example to our children. Sometimes we have very special times together and rejoice together. If you see me on a good day I will tell you "today is a good day"...that doesn't mean that nothing is bothering me, but I can separate that from my day a bit more now. If you pick up on the fact that it's not been a good day, that doesn't mean that nothing good has happened. Each moment has the opportunity to be good or bad, there is potential there. And as I am learning to separate the moments I'm finding myself having more good moments, as the bad moments are not ruining them for me. I have no idea if this even made sense to you.
What I do know is that I'm really hoping that everyone is feeling better tomorrow so that we can get out of this house and get some fresh air and have more precious moments.
It seems kind of silly at times to think about the moments as precious. Anyone on the outside looking in wouldn't be able to tell that anything was wrong with my husband. If you saw him on the street, unless he was in the midst of a seizure, you couldn't tell until you got close enough to see the scar on his head.
I like it when the times come that we forget the prognosis that the doctors gave. Josh and I are both dreamers...we love to sit around and talk about our dreams for the future, things that we'd like to accomplish, things we'd like to do together, and outrageous things that we don't think we really have a chance of doing, but it's fun to think about. It's been hard to do that lately...thinking past the next couple of months is scarey. And sometimes we trip over our dreams in conversation...at least I do.
My dad is probably going to dislike me saying this, but an example of something that is perfectly normal, but given the situation has us fumbling over our words. When my parents were here my dad misplaced something and he could not remember where he put it, or last saw it, he turns to Josh and says "don't get old, you'll start forgetting everything" in a split second he realized what he said and changed it to "get old, get old!"...the whole "don't get old" thing is a NORMAL JOKE, and in no way did it offend Josh, I'm just using it as an example of how sometimes the things that we are so used to saying to each other just can't be said anymore.
Blah, okay, I will go to bed now, maybe since I got it all out I will be able to sleep...hmmm, lets give it a shot.

2011-04-21T13:41:00.002-04:00

having a hard time with my thoughts right now. The idea of losing Josh is horrible. Not just because he's my husband and the father of my children, but because he's Josh.
To lose Josh, for him to be gone, that's a tragedy.

2011-04-20T21:55:00.003-04:00

I HATE THIS I HATE THIS I HATE THIS!

Sorry to start out this way, today really has been a good day, as someone said to me, it's a moment by moment thing. Let me start with some good, tell you what I hate and then get back to some good, I have to end this on a positive note because God is so good.

How amazing is it that my 4 year old daughter is my sister in Christ. I want to be sure that I continue to teach her about what it is to be a follower of Christ. I want to take the opportunities that arise throughout each day, there are many of them, from how she practices obedience to how she treats her brother...each day has these opportunities and I want to be sure that I don't get too wrapped up in myself that I forget about teachable moments.

Okay, here is a moment of complete honesty....since my parents left a week ago I have done little to nothing around the house. I've been trying to keep our family busy outside of the house and just left the house alone. I kept telling myself that I was going to do something, but I never got around to it. Today was a breakthrough for my. I am so thankful that we've had so much help, and people bringing food in disposable containers or else the "burden" of housework would have been overwhelming. But thanks to all of the help I was able to step up and do some housework without that feeling of defeat. It's really good because I needed to get back into the swing of some normal life activities.

While I need those normal life activities, I also need to come up with a list of things to do as a family, ways to make the most of each day that we have together. Suggestions are welcome. If I can find balance between these things I will be a happy lady.

An amazing thing that happened today is that Josh and I got to go on a date! We have neglected that part of our relationship for a while. It's been hard over the past 6 months, and even now we have to take Kassie along with us. Anyway, we didn't do anything too exciting, just watched a movie, then went to dinner at Panera Bread. We had a nice dinner, and some chatting. Then I got serious and asked Josh "Are you scared?" We haven't really had any opportunity to sit down at talk about stuff since Nashville. Josh talked and I cried. It's the first I've cried since Nashville too. One of the worst things to think is that if the prognosis is right, how much will the kids remember about their daddy? I don't want to be alone. I HATE to think about watching Josh die. I REALLY HATE THIS!
So, that lasted for a little bit, and then we went back to laughing. I love that we can do that. We can take the time to deal with some of the bad stuff and then turn around and find something to laugh about. My favorite thing is when I make Josh laugh. Josh has an awesome laugh, and it's not all the time that I can keep up with him and his joking, he's "quick on his feet" in a sense. But everyonce in a while I can be as quick as him, and to hear him respond with laughter is just one of those amazing things. That's when I say "I know I'm funny" or "I'm very funny" something like that which usually makes him laugh a little louder or longer.

(why in the world did I just read "ministering to the terminally ill"?)

2011-04-19T21:02:00.002-04:00

Yesterday I had the opportunity to drive out to walmart, just me and James, on the way to and from I had some great conversations with my heavenly Father. That's where I have a lot of the best conversations, in the car. During my prayer I called out to God about how I was supposed to tell my kids about what the doctors say about their daddy. Kosette is the only one who can understand at all, but I asked her all the time what she knows about her daddy, because i'm never sure how much she's heard. Well, she would say "he has seizures, he has a brain tumor, he had surgery" By the time I got home I knew that I needed to tell Kosette more. It became extremely apparent how urgent this was when I realized how many sources she could hear from about this and no one else really knows what we've told her.
So I let kosette know that we needed to have a conversation.
Today at the Doctor Kosette looked up from Dora (that was a great way to entertain them) and asked me "why does daddy need to come to the doctor?" Being that the room was crowded, and I wasn't sure how to start I just told her that daddy is very sick and the doctors are getting him ready to get medicine that will help him stay like normal daddy. And then I told her we would talk later.
After the doctor we went to Chick-fil-A for brunch. I had to stay in the car to feed Kassie while the others went in and during that time I just asked God to give me the words for Kosette.
When I got in to the kids we started having a conversation right away, I told Kosette that daddy has a brain tumor and the doctors can't fix it. They can make it better for a little while, but they can't make it go away and that they say that daddy will get very sick and eventually he will die. I told her this is a bit scarey for us since the doctors can't fix daddy, but we know that God can. We don't know if God will heal daddy, but we know that God will show us how much He loves us through this. Then I asked Kosette if she had any questions, "Why do peoples bodies do this? Why did daddy get the brain tumor?" This took me back to original sin. I told her about how God made the world and Adam and Eve and that they never got sick, but then I told her about how Satan was in the garden and how he wanted people to do bad things and to go against what God had planned for them, and he talked to Eve and told her she should eat fruit that God told her not to. Then Eve decided to eat that fruit and so did Adam and because they did something bad, that God told them not to do, they couldn't be with God like they used to be. They used to walk and talk with God face to face in the garden, but because of sin (the bad stuff) they couldn't do that anymore because God was perfect and couldn't look on them with the sin in their lives. And that because of that sin people started getting sick and dying. Then I went on to ask her what she knows about Jesus, and she went through all that she knows "Jesus is God" "Jesus died on the Cross" "Jesus came back to life after he was put in the thingy" (tomb) Then I went back over that, Jesus is God's son who came to earth and became a man. He lived a perfect life and then he shed his blood and died on the cross to take our punishment for sin. When he died he lay in the tomb for 3 days and then he defeated death and raised up to life so that we could be in a relationship with God again. We can talk to God and when we die we can go to heaven and live forever with God. To do that we need to believe that Jesus is God and that he died for our sins and raised again and we need to choose to follow him with our lives and then we tell him that in prayer.
She took this all in, and then was ready to eat and play. We went throughout our day, answering questions for her whenever they came up, about daddy and what the doctors say and such.
Tonight after I prayed for the children when we put them to bed Kosette began asking more questions about all that we talked about at Chick-fil-A. She really wanted to know about Heaven and when do we go there and so on. She and I talked for a half an hour and she told me that she wanted to pray that she believes in Jesus and the cross and that he came back to life to save us. (big stuff for a 4 year old, I will admitt that I was kind of concerned that she might be too young to understand, but she seemed to get it with a child's faith) At that moment James pinched his fingers in the closet and needed my attention, so we called daddy in, and it was a precious moment between Josh and Kosette when he talked to her again about what she wanted to pray and helped her to pray.
So tonight, on April 19th 2011 at 8:45pm Kosette asked Jesus into her heart :-)

2011-04-18T12:50:00.002-04:00

Today we met with the Radiation Oncologist here in Knoxville....is it just me, or do the doctors get a lot nicer when you have terminal cancer? Just something we've noticed, every doctor that deals with terminal patients has been so gracious and just truely kind. The first thing this doctor said was basically that it stinks that we were there. He was so kind and answered our questions, and told us that although gamma knife is not an option right now, with the recurrence of GBM it might be. We have an appointment set up for tomorrow to make Josh's mask, he will get more CAT scans, and have the mask marked for radiation....then we are hopeful to start treatments on Monday. I asked the doctors opinion on our move, about when we should make the move and he agreed that between the completion of radiation and the MRI that is to take place a month afterward is the best time for our move. One thing this doctor said, that no other doctor had said before this is that because Josh's diagnosis came from the initial symptom of seizures it was diagnosed quickly, which gives him the best chance for the "longterm" 2-3-5 years unlike many of the patients with this type of tumor who do not have symptoms other than a headache and by the time they are diagnosed the tumor is the size of a tennisball. The doctor also said that he feels like he is treating a pediatric patient when he looks at Josh and how young he is, saying that he shouldn't be dealing with health issues like this at his age.

2011-04-17T22:21:00.003-04:00

today has been a pretty good day. I was so touched this morning by the hearts of the children. Several of them made encouragement cards for Josh this week, and one little girl who is a friend of Kosette's and who I taught last year in the Preschool class insisted that her card was for me. I miss those kids. We ended the evening hanging out with some friends that we've known since we moved to TN. They lived here for a couple years and I watched their daughter for a year and a half and she and Kosette came to be like sisters. It's fun to see how they just pick up where they left off. WE had a good evening with them, talked a little bit about what's going on, but were able to sit back and relax and just let the kids play and enjoy company. The hardest part about leaving TN is going to be saying goodbye to so many good friends. We have been here for 3 years and have cultivated some good friendships. We knew when we left PA that we would be back to visit and see our family and friends, and we knew that we were hoping to move back, but leaving TN, we don't know if we will be able to visit, and a lot of our friends here will graduate in a few years and spread out across the states. So this goodbye is going to be a bit different, especially because of the reason for a goodbye happening now. Well, tomorrow morning is meeting with the Radiation Oncologist, first thing in the morning. Hoping to start treatment VERY VERY soon!

2011-04-16T16:10:00.002-04:00

I don't mean to sound defeated, We are not defeated. It's just that I know I have a lot to do to work through these emotions, I have barely started...and many times my writing is the only place i let these things out.

sleep

2011-04-16T10:44:00.003-04:00

last night sleep was hard...and being awake at night gives the mind time to think about things, and it's the kind of thoughts that make a person sob. (deep breath, sigh)

2011-04-15T23:00:00.002-04:00

when things began to spiral out of control on October 4th, the night of Josh's Grandmal seizure that began us on this journey to discover his brain tumor, Josh taught me right from the start the importance in humor to relieve stress. Josh was cracking jokes and quoting lines from movies in the ER when we were waiting for them to tell us what had happened. over time I learned how to make jokes too, and we've done as much laughing as we can over the past 6 and 1/2 months. There have been many tears as well, but definately more laughing. Well, today I realize that some of the things we've been laughing about, i can no longer laugh about. One thing, we've made light of Josh's speech "impediments", when he stutters or says a wrong word...we haven't done a lot of that, but we've tried to stay upbeat about things. Now, I can't find reason to laugh about that. It's a sign that the tumor has grown at that particular place in his brain, the fact that it effects him all throughout the day. I was actually quite impressed that most of the day he did not have this problem today, but then when he got tired it was obvious in his speech. It's a lot harder to laugh right now. Though tonight's hanging out with friends proved that it was possible. Something that was said triggered a memory, and I don't know what it was about that memory that made me laugh hysterically. Several times while we were together with friends, my thoughts went to some very unsettling places...I hate when that happens. And I hate when I think of something that I think Josh should do for the kids for the future because of the reason behind doing it, and I hate it, I hate it. I wish I didn't think these things, but I fear if I don't share them then we will miss out on what would be a good thing for the future, especially for the kids. I hate this. I also am upset at myself for the selfish thoughts that I have. When it hit me that we are done having kids. I don't know if we would have had another one either way, but the possibility was still there for maybe 1 more, if down the road that's what we decided. But it hit me during on of the appointments, no more kids, I'll never be pregnant again, need to get rid of maternity things and such. HOW SELFISH OF ME. and really insignificant considering. I have so many selfish thoughts. I don't want to lose my husband. ARG----going to leave that alone right now. I had a few things come to mind today that may be an urging of the Holy Spirit, I still need to talk to Josh about it and we need to pray about it, so I won't share it on here, but if this is truely the Lord's leading, it might establish some clarity on some things. I am amazed each and every day by the love poured out to us. God is meeting us here, where we are and walking us through each day. This morning Josh went to one of his counseling classes and shared with them...I think it was not only to share with the class about what Josh is going through but also to give them a learning opportunity, something I am sure that they will use as they counsel others who may be going through a similar situation. I wish I could have been a fly on that wall because I think that Josh shared more with them than he has with anyone else, and I think it was a very good outlet for him. I have a lot of stuff going through my mind, but I don't think you want to know ALL of it. So I will say goodnight now, and thank you all for your prayers for Josh and our family. A couple things to pray for (other than healing, peace and comfort which i know you all are praying for) is the housing situation in PA as well as Insurance for Josh when we move.

lots about the tumor and Josh

2011-04-13T20:18:00.005-04:00

I think that tonight I might need to explain a little bit since i don't know that I have and we love you all and know that you are invested in this with us. Josh's tumor, a Grade 4 Glioblastoma (Multiforme): First the Grade: Grade is the system used to clarify the abnormality of the tumor cells as well as how fast the cells multiply (on a scale of 1-4 starting with most benign going to most malignant) Second Glioblastoma: this is a tumor in the brain, and once again means that it's very malignant. It also has to do with the cells that are involved called "glia" which is the connective tissue in the brain that holds the nervous system together. Because this is the part of the brain that the tumor is growing from it is intermingled with the good nerve cells. And Here we go.... Because of this intermingling and the area that Josh's tumor is located SURGERY IS NOT AN OPTION. Most people with brain tumors go right to surgery to remove as much of the tumor as they can. Because of the location of Josh's tumor and how it interweaves it's way through his good brain tissue, and because of the amount of vascularity (bloodflow) to the area, Josh is unable to have surgery to remove this tumor. Okay....many have asked about gamma knife. It's a valid question, but the answer we got from the doctor is "if you can't cut it out, you can't burn it out" basically because gamma knife has the same problem as surgery in the way it's intermixed and the location. They don't want to take away josh's basic ability to function. Here we are now, trying to set up his radiation to start next week or the week after, but as soon as possible. He will have radiation monday-friday for 6 weeks AS WELL AS Chemotherapy which is designed to just make the radiation work a little bit better. I asked the doctor what the probability is that the treatment could cure Josh. His response was that every once in a while someone will beat the odds, he has 1 patient who is at 17 years. He also explained a little more about what the prognosis means....but I'll be onto that later. After Josh completes the 6 weeks his body will have a resting period of about 5 weeks, at which time another MRI will be taken. This MRI is expected to look worse because of scar tissue and swelling...which in fact will probably make Josh's seizures and fatigue worse than ever. The fact that Josh has not had surgery means that there is no extra space in his skull for that swolled tissue to take advantage of, therefore it will effect him in a greater way and he will probably go on steriods to help with the swelling. After this time he will begin another course of Chemotherapy, stronger than the first course, he will take the meds for a week and then be off for 3 weeks and then take again for a week and be off for 3 weeks and so on, every few months having another MRI. As long as he tolerates this course of treatment and the tumor stays dormant it could continue for a year. His chances of this treatment prolonging his life are good because of his young age. This is the hard part...and it goes back to what was said before about what the prognosis means. Treatment will kill tumor cells, but it is highly unlikely that it will kill all of them, even if it looks clear on the MRI, on the microscopic level those cells will still be there (unless by a miracle God wipes them out). The goal (other than curing, which would be an amazing goal to reach) is to put the tumor to sleep essentially. How long the tumor stays asleep is completely unknown to us, the Chemo grouped with radiation is supposed to give Josh a couple extra months before that happens. The doctor said that the tumor could stay dormant for only a couple of months, or it could be 2-3 years, and that the 10% who make it to 5 years is an improvement from the 2% it used to be. Like I said, we don't know the time when all of this will come about, but God does, He has this all mapped out and He's not leaving us to drown. I am horrified at the reality that this prognosis presents. Most of the time I choose not to really think about that part of it, it's something that we cannot handle on our own. I don't want to watch my husband die, I don't want to raise our children without him, I don't like this pit in my stomach that seems to go on forever. Given the best numbers that the doctor could give us, that puts Kosette right around the age of 9, and James about 7, and our little baby girl would only be 5, and that is the long range prognosis. We truely appreciate the love that everyone is offering, we are touched by those who would offer a hug, a helping hand, encouragement and even fund raising. These do mean a lot, and I know that we will want to see as many of you as possible whenever we can. We are praying for a miracle, and we are living day to day watching out for the needs of our children. We are going to do our best to meet the needs that they have, one of which I think is stability, and i think that by moving to Pennsylvania and being surrounded by family, that will be one way in which they receive that stability. They may not understand what is going on...I asked Kosette tonight what she knows about her daddy, she said that he has seizures, has to see the doctor and has a tumor. She doesn't understand what that means, and therefore is not scared, I'm working towards talking to her a little bit at a time. i don't know if it's best to tell her now or to wait a while. Josh has been very quiet today. I did notice when he has talked that his speech seems to be more effected. I don't know if he is just tired or if the tumor has grown to effect him even when he is not having a seizure. I love my husband, Joshua Mott...

2011-04-12T22:49:00.002-04:00

Kassie-AKA "Squirmy" or "Squeakers" is such a good baby. She's so happy, gives the biggest smiles and loves her daddy. She's so close to laughing. Manytimes when she gets excited she smiles really big, turns her head away from whoever made her smile and makes a noise that sounds so much like she wants to laugh. She is finally to the point where I lay her down to fall asleep, so she spends a large portion of the night sleeping in her bassinet. She does not sleep through the night yet so she still ends up in bed with us, but this is a big step forward. In a month or actually probably 2 months, she will move into her crib. James-AKA "Mop Top" wow, what a boy. He has energy like you can't believe. He has definately hit the terrible twos as he flares up a tantrum here and there, or outright refuses to do what you tell him to. He is very big into playing ball, and he's also got a thing for music, especially drums and guitar like his daddy. James is such a sweetheart, he almost broke my heart the other morning as we were heading to Nashville. I said goodbye to him and his little voice said "don't leave me". Kozy-AKA "Tangled" my helper girl. She loves to take care of everyone. She also has a mind of her own. Her individual personality appears more and more with each passing year. She was our pride and joy (they all ARE our pride and joy) she did everything with her daddy. She doesn't know exactly what is going on, but at 4 years old, she definately picks things up. tonight I tried to talk to her a little bit about what the next couple of months are going to hold for us, She got big tears and a pouty lip, and I was trying to answer a question she kept asking over and over again, but it became apparent that I didn't understand what she was asking. Turned out, she was most concerned with when we might be getting a "Lucy Puppy" (those of you who do not know this story, we used to have a beloved pet named Lucy who passed away when Kosette was 6 months old, we've been telling her since the day that we moved here that when we left we would get a new "Lucy Puppy" and she's been saving her pennies for this.) So that brings up another point. It doesn't seem like we will be staying at JBC as finishing school is not a priority at the moment. We haven't gone through the details of that, but we will definately start to pack up. Josh will have 6 weeks of radiation therapy (along with chemotherapy by pill form) that we are hoping to set up here in knoxville beginning next week maybe. He will probably only ever have that one 6 week treatment of radiation, it's very rare for them to do more than that. After that he will have about a month before an MRI. We expect to be moving out sometime between the end of radiation and the MRI and hope to be set up with a new doctor at our new location for that MRI and the continued Chemotherapy and such. We are hoping that new location will be in PA near to our families. We have many details to work out including finding doctors, setting up insurance, finding a new home...(we can stay with my parents until we find a new home, but it's very important for our family to have our own place). We will also have to deal with the debt that we've accumilated in Student Loans. HAHA...didn't think that would bite us on the butt so soon. We have a lot to get in motion....and it starts tomorrow morning with calling the Local Cancer Center. So, yeah, when mentioning to Kosette that we are packing to move all she could think of was "Lucy puppy". But she definately knows there is something big going on. I'm sorry if the news above is shocking to some of you (about moving) but if it's possible, we'd definately benefit from being near family. We need our family (and I know many of you are like family, we will miss you deeply). I was told to mention any way that i could use help, and since I'm thinking about it, Over the next 7? weeks as I try to pack up I could use help now and then with watching the kids, or packing some boxes, or maybe scrubbing a floor or windows here or there. I know that I have a hard time saying yes to help, but I can recognize the need.

2011-04-11T20:54:00.002-04:00

Sitting in the Doctors office today we learned about Grade 4 Glioblastoma (multiforme or "GBM") This is what is inside of Josh's head. Josh is young and considerably healthy, so the prognosis that the doctor gave for his condition was on the "long" side for grade 4 glioblastomas, being 2-3 years (average). She did mention that people with a certain mutation respond better to treatment and they usually make up the 10% that make it to 5 years. The only way we would find out if he has this mutation would be for him to undergo a clinical trial. Currently the treatment plan is 6 weeks of radiation treatments, 15-20 minutes a day monday through friday, that can start as soon as possible. He will do this in conjunction with chemotherapy, which will most likely be in pill form, something that he will take on a daily basis. We have a lot to figure out. I don't know what or when or how we are going to tell our kids about this. It's very likely that we will be moving, as school doesn't seem....well, you know. We have much to do before that, lots to look into....details. Basically, our focus on life right now is going to be a focus on our family.

2011-04-09T22:21:00.002-04:00

I don't know where my mind is supposed to be, what I'm supposed to think about, but God, i pray that you would heal my husband. Lord I don't know how to do this, it's so big and I'm so small. How do we talk to our kids about this. Savior-you can move the mountain, you are mighty to save, author of Salvation, you rose and conquered the grave. I know that was the ultimate gift of life that you gave to us, is it even right for me to ask for more? Lord, I beg that you would heal Josh completely of this tumor, that you would restore health unto him. God I am so scared. My insides are turning, my heart races and I grow faint at the thought of this tumor. When I see the pain, and the way each seizure affects him, Lord God I beg you to come rescue us.

I love my husband. His desire is to make everyone happy, but sometimes he can't do that. He's been very worried about going to church, he wants to go, but with the realization of the loud music, as well as the amount of pain and fatigue he has every day (especially pain in the morning) he has finally decided that maybe this week he will have to stay home. This was very hard for him as he didn't want to let anyone down. Trust me when I say that I'm glad he has made this decision. Even the car ride over would be painful for him, on thursday he tried walking around the campus, and he spent the rest of that day and the next (and maybe even today) paying for it.

The other thing that made him feel bad is me. I didn't do this on purpose, but we had a couple invites to hang out with friends today, neither of which he was up for. He felt badly that I didn't go and have fun. I couldn't have had fun like that today anyway, if I would have gone to either of the invitations without Josh, my mind would have been somewhere else. He feels bad about that, as if it's his fault somehow. I love my husband and I have plenty of fun with him, today I may not have had "fun" but I did go on an errand run in the morning with my dad, and in the evening with my mom.

Lord I am so thankful for my parents. I pray that you would bless them abundantly for how they honor you with their compassion

Tonight James moved into a twin bed, first time ever in his own big boy bed. He likes it, but once it was time to turn off the lights and say goodnight he threw a fit! He wanted his little bed. (we moved him off of the crib/daybed so that Kassidee can move into it soon) The only way to make him happy was to give him the part of the mobile that plays the music and he held it up to his ear and drifted off to sleep.

tomorrow is my last full day with my parents. We head to Nashville on Monday and come back Tuesday night.

Lord thank you for the peace that you have just given me, without your peace i would go insane, and sleep would evade me.

2011-04-08T23:53:00.002-04:00

tonight i want to scream. First of all, why does this have to happen to my husband?!?! Josh's amazing NeuroSurgeon has said that he believes it's very likely this will come back a grade 3 glioma...read a little about that tonight, and basically grade 3 and 4 gliomas are RARELY CURED, they said basically that treatment is to 'put the tumor to sleep' for a while. Once again, my mind is unsettled, How can this be happening to us? What are we supposed to do? One thing I read said that temporary or permanent disability should be taken once a person is diagnosed with a high grade brain tumor. What are we to do? How can I take care of Josh if I can't fix this? (and I know that I can't). We are so impressed by the doctors concern and how amazing this doctor is taking care of Josh, but then I realize that its because of what's in Josh's head that he is getting this kind of treatment. Life has already changed, but it's about to change even more. I HATE THIS! I HATE THIS I HATE THIS I HATE THIS! Josh is so good, he's so upbeat, and he never tells anyone how he really feels. Josh has this goal to make everyone smile. He's so good at that. He even makes me smile. I just don't know what to do. If my parents weren't here I might explode from all of this. We truely appreciate having them here. I just don't know how we are going to do this.

many ramblings.

2011-04-07T22:18:00.003-04:00

Not sure what exactly I am going to write about tonight. It would be easy for me to just shut down right now. Since the morning of Josh's surgery I haven't much been in the mood for talking. I have been learning about how i deal with things lately, it's not how I would imagine myself---at least it hasn't been so far, but during the surgery I just kinda wanted to be in my own little bubble as I prayed for Josh and waited to hear word. Now and then I would snap out of that to interact with family members who were waiting with me, and to play with the kids or talk to them. Josh is recovering at an incredible rate. We walked around the campus this morning and were back home by 10am, then he was so worn out that he slept most of the rest of the morning and the afternoon, by this evening around 6pm he was back up, enough to sit with the kids at dinner and have some conversations, and he stayed awake for the rest of the evening, though we didn't go on another walk like we had talked about, but that's okay, in time he'll be up to 2 walks a day. Today we got the children back on their regular schedule, yesterday was close to regular and today was regular, so I'm hoping that by tomorrow they are back on track with less tired whining. I love my kids and it's been so helpful to have my parents take on the major role with them this past week, it's given me a break so that now I can come back to them and I have more patience, my relationships with them are in a better place than they were 2 weeks ago. Kassie absolutely hated being in the carseat on Wednesday, she's been cuddled with so much, it was like torture to be stuck in that seat. She cried a new cry, one I'd never heard before, it was so sad and so hard to hear as I was driving, the sound of her cry was like her heart was breaking and she was scared and abandoned, it was so shrill... Well, I guess I had a lot to say...what I'm about to say I hope that you don't take the wrong way, please don't misunderstand this: i really don't feel like talking, not really about anything. By this i don't mean that i won't talk, and i don't want to stop anyone from talking to me, just because I don't feel like talking doesn't mean that i shouldn't talk. it'd be really easy for me to shut everyone out, but I know that is not healthy. And it's good to talk to other people about anything, including about what Josh is going through and how it's affecting all of us. Many times its in my conversations with others that I discover something new that God has been teaching me or something that He's been reminding me of, such as the fact that He could use this situation however He wants to, He works all things together for good, but we don't know what that means exactly, we don't know what that looks like. Even so, we have to trust that He is God our Loving Heavenly Father. It's so much easier for me to get on here and write about things, I can think through them a little more clearly this way, and i don't feel pressured to talk. If you see me, it's okay, in fact, it's good for you to ask about how we are doing and what's going on, and I don't want to discourage anyone by this silly post. We are so thankful and encouraged by the overwhelmingly amazing amount of support that we have in all of you. God has heard our cries and beside me sits my wonderful husband, reading, only days after brain surgery. Okay, in other news, Kassidee is in her bassinet for the night, woo-hoo. Don't know how long it will last, but it's been over a week since she's slept out of our bed. We head back to Nashville on Monday for more appointments on Monday and Tuesday.

Brain Surgery Day

2011-04-05T21:09:00.002-04:00

It was an early morning and Josh was in good spirits all day long, he was rolled into surgery at 7:35am and the waiting game began. at 8:30 we got the call that surgery was going well and at 10:30 we got the call that Josh was out of surgery and in the recovery room, almost an hour later the doctor called down to report that Josh was able to talk and everything seemed to be working properly and that they got what they needed of the tumor for pathology. Around 1pm I was finally able to see him (that is where I took the photo that many people are seeing on facebook of Josh---for his purposes so that he could see what it looked like.) The incision doesn't look too bad, but there are no bandages over it, so it's hard to miss. It was a little swollen when we left tonight. In the recovery room Josh was cracking a few jokes. He can't smile too big or chew, certain muscle movements pull at the incision site and irritate it. He is on a liquid diet at the moment, and before we left him for the evening he was up and walking around with us. The doctor said they will probably release him tomorrow. It's a great thing to have the surgery behind us, once everything came out okay we all got very tired. I'm so glad that this is over and God protected him through this surgery...I just can't forget that this isn't the end of it, this is a big step in the diagnosing process and soon we will be into the treatment process, but for tonight I can sleep in peace that he came through this so well. Currently he is dealing with pain and fatigue, and I'm sure that will continue for several weeks, before we left we encouraged him to talk to his nurses about his discomforts and thirsts and such, he is not the type to ask for anything, doesn't want to inconvienence anyone. This is one thing that I would have stayed with him to take care of if I didn't know how important a good nights sleep was to everyone.

a little more about today

2011-03-31T22:34:00.004-04:00

one thing I forgot. please pray that the sample that is taken in the biopsy on Tuesday is perfect for their needs, we were informed that if it gets to pathology and there is not enough or something is off from what they need then Josh could need to have a second biopsy. We've been tired today, and spent most of the day at the hospital, but even so it's been a good day. There has been laughter, and Kassidee has enjoyed Grammie and Granddaddy. Tomorrow the others will join us in the evening, and we are going to explore Nashville a little. Keeping busy is helpful for keeping us focused on life and not on the scary stuff. I'll tell you, the moment when things started getting scary for me today is when they handed Josh the paperwork for his living will and advanced directives. Pray for Josh tonight as he sleeps, pray for peace, i'm sure that his nightmares from last night were related to the anxiety over the upcoming surgery, and it's possible that could get worse before tuesday, so please lavish him in prayer. Thank you. (If you missed the earlier post, there is some good information there to keep all of our friends/family and prayer warriors updated)

2011-03-31T17:12:00.002-04:00

A few things from today: When we talked to the nurse this morning, we learned a few things about Josh's tumor and treatment. Nothing can be said for sure right now...once the pathology of the biopsy comes back we will know more things for sure, but in the meantime this is what we have to go on. In the doctors notes he stated that Josh's tumor is possibly a grade 3 glioma. During the biopsy the surgeon will look at the sample and use his experience to get a better idea of what type of tumor. He will let us know what he thinks it is after the surgery, but it will take 10-14 business days for the official pathology report to come back and then we will come back out to Nashville to meet with Neurological Oncology and Radiology to say--THIS IS WHAT IT IS AND THIS IS HOW WE WILL TREAT IT. As an idea of what treatments will be like if Josh is getting Radiation, 5-6 weeks of 15 minute treatments every day monday through friday. Good news is that they can set this up somewhere local in Knoxville so we will be able to stay at home. The treatments could start as soon as 2 weeks after the biopsy. As far as recovery from the biopsy, the nurse said that it could be up to 6 weeks with the major symptom being fatigue. Josh will have a titanium plate covering the hole that they are drilling in his skull.

2011-03-29T11:36:00.002-04:00

my heart always leaps with excitement as I hear about Missions. It's always been this way. I read that the Niemond's missions conference starts Sunday and even though I won't be there, I got excited, I hope that those who attend each night are thoroughly blessed and that God leads them with a burning on their hearts.

2011-03-29T10:05:00.000-04:00

is it normal to start to wondering if i'm making this all up?

2011-03-29T08:56:00.002-04:00

One thing that I've learned is about how kids use play to deal with life. Kosette has started worrying about stitches...we've tried to prepare her a little bit about what's going on with Josh. She knows all about his seizures as she has witnessed almost all of them, and she's a good helper, sometimes she will sit with him and hold his hand until it's over. So we've explained that the doctor is going to suck out some of the stuff that is causing the seizures to find out what it is and how to make the seizures stop...and that he will probably have stitches when it's over. She's asked questions like "why can't the suck out the whole thing?" She talks about the "sucker machine" today as she asked about stitches I talked her through what they are and showed her where I had stitches from my c-section and showed her that it looks okay now. So her play today is about how the doctors us an axe to get babies out. ummm.....not sure where the axe came from, but she has a lot of play right now about going to the doctors and staying there for a while, she's sending her stuffed animals to be thoroughly checked out right now.

2011-03-28T18:01:00.002-04:00

Let's be completely honest, thinking about my husband having an inoperable brain tumor scares me in bigger ways than I let on most times. It's easier not to think about it when we keep busy, which is why you may see that we are heading out yet again for something that is trivial. But if we keep moving together and talk and find things to laugh about it doesnt' seem that bad. Once things slow down and I'm not actively involved in something, my mind wanders to this: my husband has an inoperable brain tumor and he might die from it. It could take him away from his children and away from me. I can write this and not cry because it can be super hard to cry for ourselves right now. When we hear about what others are going through, then the tears don't stop, but it's as if we are living in denial. Instead of crying, I have panick attacks. They mostly strike at night when I can't fall asleep and all I can do is pray "God, please heal Josh, please heal my husband" I know that God can heal Josh, he can wipe this tumor right out. He can also leave it there and allow the treatments to be successful at curing Josh...or He could not do that. I need to successfully cast all my cares upon Him, it's really hard, and sometimes I do it, and then I take them back. I know that He's already scouted out this road and He will carry us along when we don't have strength to carry ourselves.

2011-03-28T08:06:00.004-04:00

wanted to clarify a bit about Josh's "inoperable tumor" Why is it inoperable? The doctor said that to have a surgery to remove the tumor was a great risk, first of all, the area where the tumor is located has a lot of blood flow also the tumor is intermixed with good brain tissue, and to try to remove it would be (in the doctors own words) "completely devastating to Josh" So this is why we just keep praying for God to interviene and heal Josh. The surgery on Tuesday is not to remove the tumor as that is not a possibility, but it is to take a sample of the tumor to best know how to treat it with other therapys. The doctor said this is still brain surgery, still with it's risks, but the risks are significantly less than the surgery that we were originally preparing for.

2011-03-27T13:27:00.004-04:00

"Lord God, as each day passes I feel my body tighten with the anxieties of this life. But Lord, I know You already have the victory over all of it. Lord God let me walk in Your victory that my heart can celebrate in joyful glee, knowing that You have gone before me and layed the path, You have scouted out my enemies and have cleared the way so I do not have to be entangled in worry and fear." I am so glad that I wrote this prayer down, it's from February 6th, 2010. My worries and fears and struggles were so different then, and yet my prayer remains the same. On the back of it I found a letter from my husband. During our dating years we went through a really rough patch, some things happened and it looked like our relationship was ending. I haven't asked Josh if I can share this, but I hope that he approves, I just want to share a few lines from that letter that discusses some of that. "I fell in love with you before I knew what it really meant to love someone...but there was a day, a hard, long, straining, miserable day when i realized how much you loved me...I have spent the past 5 years trying to understand, grasp, and show that same love to you." It's amazing that he thinks of me so highly, it is only because of the love that God has given me that I was able to get through that time, and it was truely God that brought us back together, even stronger than before. And trust me, Josh loves me in such a great way, through all of my own faults, and there are many. But there was a time when that seemed like the end of my world. Sometimes that is what this seems like, the end of my world. The thought of my husband having an inoperable brain tumor. I have been so blessed to have him as my husband and to be gifted with such beautiful children. I hope some day to look back at this and see that it's not the end of anything, but that it was a time of strengthening. I keep thinking about how so many people around the world are praying for us, People who we've never met know our story...and this makes me think that our ministry opportunity is growing. But here is my question, what does that mean? what is our ministry? Pastor Bryan said this morning that many times Ministry becomes like business, but that instead our business should be ministry. (I think I said that right)...made my mind start wondering, what exactly is this ministry that I keep thinking about? Maybe it's just this, writing down all of my thoughts and what is going on and how God is working in our lives, but maybe it's something else. I would like to let you know that if you want to share my blog with anyone, that is fine with me. It's not about getting my words out, I thank you all for your compliments on my writing, but if it makes sense at all it's only because God is organizing my thoughts, I am normally quite scatter brained, having too many things going on in my mind at the same time. And if my writing shows that, well, you know why. The reason I want you to know you can pass it on is because we COVET PRAYER. I also want to open your eyes to those people who might be near you going through difficult situations. I learned today of a friend who just this week heard from her doctor that the pain in her stomach was because of a large tumor and there was evidence of more tumors in her body. I don't have all the details, but this is a mom and wife, she has 4 children and is faced with such a difficult and unknown future. I also have a friend who over the past week or two, learned that his dad has a large tumor in his brain, I believe they are starting radiation therapy soon. There are many others that I've heard of recently with other health problems, i know that I cannot name them all here, but it seems that everywhere I turn there is someone else facing a health crisis. (And I don't say a crisis is only something that might be malignant...sometimes it doesn't seem as big in the grand scheme, but it effects someones life, and every persons life is valuable.) Anyway, these are just a few of the recent prayer requests that I wanted to pass on. Keep your eyes and ears opened to the people that you are in contact with, everyone has something going on in their lives that I'm sure they'd like prayer for. AND if it's something hard and you don't know what to say, many times it's best not to say anything and just listen, and then pray. Ok...so sometimes I ramble about anything that comes to mind. Speaking of prayer requests and my prayer letters that I just came across today, I found one that is from last September...I remember that, when our biggest worry was that we were going to lose our vehicle. We gave up our vehicle because we could not afford it, and then God opened the hearts of His people and we have a van sitting in our driveway right now that it completely ours, (squeaks and all!) To think that we were so worried about that, today if I were to be given an option between husband having a brain tumor and living without a vehicle...which do you think I'd choose? I just pray that God heals Josh and that next year at this time I can say, "to think I was so worried about that" It's Sunday, in a few days my parents will be here to take care of James and Kosette and we will be on our way to Nashville where Josh's parents will join us. Josh has testing all day thursday and Tuesday morning, 5:30am he shows up for the brain biopsy. They will make an incision, drill a hole and suck out a small portion of the tumor with a needle. They will keep him opened until the pathologist gives them the okay that the sample is indeed tumor tissue, then they will close him up. They said it's about 3 hours from beginning to end, and surgery is scheduled to start at 7:30 (8:30 eastern time). The risks are infection and bleeding (the area is highly vascular). We thank you for your prayers.

2011-03-25T15:56:00.002-04:00

This has been a good day. And i really thought that after you've heard from me on my bad day that I should share a good day with you as well.
We didn't do anything spectacular. We had pizza for lunch...we were sitting in a booth and the kids had booster seats. Out of the blue we see James' feet fly up over his head as he flipped out of the seat and onto the floor head first. Poor kid, got lots of hugs and kisses from mommy and daddy and a nice knot on his head as a souvenier.
Then we went to Home Depot with some gift cards from Christmas. We had fun looking around, checked out some fire pits, the kids ran and smelled the flowers. Josh and the kids sat on the big riding mowers that James called "trucks". The kids picked out the grills that they would want to buy for daddy (and daddy would like that too). We looked at lamps and the kids said "beautiful!" and we made it to aisle 11, where the knobs are. We purchased 6 knobs to replace the lost knobs from our dry sink.
Then we were on to Walmart for some grocery shopping. I haven't felt much like cooking anything, so we picked up some easy snack stuff and some microwaveable meals (lasagna, chicken broccoli rice casserole...etc).
As i walked around holding Kassie she would get a nice grip on my hair, she likes to hold my hair, I think it's going to be her security item, the other kids had "fowies" and Kassie has mommy's hair.
Josh is going to be working tonight, and that is usually a time when I find myself getting more down. But today God has answered my prayer (and many of yours) and given me joy.

2011-03-24T15:54:00.003-04:00

Today is another day along the way.
It's a bit cool and cloudy today, the perfect kind of day to stay inside all day long and just curl up on the couch with the kids, watch a movie, take a nap.
Not feeling like doing much of anything today.
Josh is still on spring break, he's relaxed playing some video games and he's learning a new song on his guitar right now. Later he will be headed to work.
I'm going to make myself do something today probably while he is at work.

I'm definately scared

2011-03-23T16:17:00.003-04:00

Night time always hits me the worst. I guess it's because all of the stuff of the day is over and my mind is left with this tumor to think about. I think I slept a little better last night, but I know that everytime I would wake up just slightly I was thinking about things the doctor said, and what the plan is for the next 2 weeks...and more stuff like that. This morning I think the kids slept until 8, which is amazing in itself. Josh got right up with them in an attempt to let me sleep, but as soon as my mind was a little awake it wouldn't stop running with thoughts. So, I got out of bed. Josh made "woofuls" and "yayfuls" "woofuls" are waffles that James said "Woo!" for, "yayfuls" are waffles that Kosette said "YAY" for. I felt like I was dragging this morning, like a gray cloud was hovering over my head ready to rain on me at any moment. Then I realized, I don't want to be like this and I remembered the words of another friend who is going through a trying time herself, with a child in the hospital and so many issues bombarding her...she said that she tries to keep an attitude of praise. So that was my goal for this day.
We spontaneously decided to take the kids to the $2 theater to see Tangled. We didn't tell them until 20 minutes before the movie started and they were thrilled, they tried to be on good behavior, and they squealed and jumped a bit. When the previews started it was as if James had never seen a movie before. Honestly, we haven't taken them more than once since James started walking (i don't think) because James couldn't sit through an entire movie. So this was like a whole new thing for him and he was so excited.(I am wrong about that, he saw Narnia and Toy Story 3 in the theater) They both laughed very loudly, and were very entertained by the previews, and James was super excited to see Mickey Mouse behind the wheel of a ship whistling his tune....Then the movie started. I could help but notice that Rapunzel looked a lot like Kosette. From the shape of her face and eyes to even her nose...and the hair was a little similar as well, though Kosettes is not quite so long or strong enough to hang on.
On the drive I was struck by the beauty all around us. It's springtime in Knoxville, the grass is getting greener every day, there are yellow, pink, purple flowers on the hillsides...the trees are all sorts of colors, from white to purple to red.
I'm still having moments when I feel tears or nervousness well up inside of me, but I set my thoughts on the Maker of Heaven and Earth.
One the way to the theater I was listening to some good old "FFH"
"Lord move in a way that I've never seen before"

2011-03-22T08:27:00.003-04:00

I wrote on FB last night that i was reading up on things that I probably shouldn't have before bed.
Back at the beginning of this, with the first MRI the report stated that it might be a low grade glioma (small tumor) and since we now know it is a tumor, i was trying to look up statistics about radiation therapy, I didn't really come up with much except that with treatment the prognosis is 10 years. That might seem like a lot to some people, but it's not when you are talking about a person....and then add that he's a father and a husband. We are supposed to have a lifetime!
I know everything that is wrong with this thinking, i know what i would say to someone else saying this. I'm just getting these thoughts out there.
the truth is that we will have to know what specific type of tumor it is before the doctors can tell us how likely it is that they can eradicate the whole tumor.
Please pray about this, I believe that God can change that prognosis from 10 year to a lifetime (or until Christ's return, whatever comes first)

2011-03-21T22:37:00.003-04:00

I want to add on here....it seems like more and more people are going through rough times right now...I hope you all know that I care about you too and am praying for those of you who I know are going through your own trials.
If you don't think I know about you and would like to share your prayer need, please drop me a message somewhere so that I can pray for you.

answers

2011-03-21T21:31:00.003-04:00

well this is the one that many of you have been waiting for. I'm not going to go straight to the answers that we got today as today was such a big day and i have lots of thoughts on the subject.
well, lets start with yesterday...Sunday. This day brought with it the promise of anxiety. It is only by answered prayer that we got through it with very little or no thoughts of worry. our community really gathered around us, in prayer and fellowship, and this is s heartwarming thing. i think that most people who walked away from that night left feeling blessed, because that is what community does, blesses each other and prays for each other and supports each other in times of trials.
Sunday night to monday morning brought another blessing. I know many of you have been praying for us to be well rested at night. This was the first night that Kassidee spent the entire night in her bassinet, AND SHE DIDN'T WAKE UP ONCE. (her bassinet is right beside my bed so I could hear her making sucking noises and little grunts). Josh and I still had some trouble sleeping but i think when we did sleep it was more restful than the preceeding nights.
We left this morning at 6:30am eastern time. Once we got on the road we had an hour full of silly songs and reading signs in funny ways (on josh's part) and lots of laughing. We stopped for breakfast around 7:30am eastern time and had a very enjoyable breakfast. We were back on the road around 8:30am eastern time....sometime after that there was a time change, but since our van's clock was still on eastern time I am going to continue writing in that time zone. The second hour of our trip was more talking and laughing....then we turned on the radio to some music we could sing to.
As we approached Nashville we tried to follow the directions that Vanderbilt Neurosurgical Clinic had mailed to us....however, there was a major error in their directions, it told us to take 24 west instead of 24 east....this added to our time. After a phone call and new directions we arrived at Vanderbilt right after 11am and Josh signed in at 11:30 (once again still writing in Eastern Standard time) These directions that we got from Vanderbilt also said to expect the appointment to last for 2 hours for all work-ups and if surgery is needed add another 2-3 hours to that time. When he signed in they began processing him right away and told us it would be a couple minutes before he was called back, unfortunately he was called back to the desk to be informed that his primary care physician never sent in the necessary out of network referral....UGH! I had called them several weeks ago about that, they told me it would be done and I stressed that we needed it done ASAP because we didn't know how soon Josh would be having surgery (this was before we had the March 21st date). The lovely ladies and nurses at Vanderbilt took turns calling our doctor to try to rush the process of getting this referral, but by 12:30 we hadn't heard anything yet. I asked one of the ladies behind the desk if it would be helpful for me to call our doctor....She was excited about that idea. So, I called them...and when I did I rose to my full height (as my father in law would say---and Josh says 5'4" isn't that tall) and told them that we were waiting in the doctors office for this referral to come through. the lady I talked to was surprised that we were actually at Vanderbilt without the referral...and apparently the only one who could do the referral was on her lunch break with her phone turned off.....so we waited more. I am sorry to anyone who thinks I was in the wrong mind when i posted about all of my frustration surrounding this....but they dropped the ball and I needed to have a safe place to vent so that it didn't come out in any other form that might hurt someone. Let me also add that I had Kassie attached to me, and I'm a nursing mom who really doesn't like nursing in public, it's very awkward for me. By 1pm we were the only one left in the waiting room of the mornings appointment.....then it began filling up again. I also realized that I felt very shaky, as though my blood sugar was low, and we weren't in a hospital type of room with vending machines and such, it was more like a normal doctors office.
right around 1:30 the lovely lady from behind the desk came out and told us that she was going to give the doctor Josh's MRI scans so that he could be ready to meet with Josh and that he would soon and they'd just hope the referral came through. within minutes of her telling us that news I got a call from the doctor from knoxville that the referral had just been sent through, she apologized kinda and said that she had worked on it the week before...but apparently she didn't finish it then.
Yay! finally called back to the doctor at just after 1:45pm.
First of all, overall impression of these doctors and the people who worked in the office...very nice. You could tell that they are used to working with patients with brain tumors. And having a cute baby attached to us definately gave us a lot of attention. The care we received even in such a frustrating position was 10 times better than what we have gotten elsewhere since this whole thing started in October.
You could tell this doctor knew what he was talking about. He asked Josh a few questions about his seizures and then proceeded to tell Josh about the tumor, it's location and what it looks like and so forth. During the appointment he actually showed us the MRI and the tumor and showed us what he was talking about. From everything we saw and were told, on the MRI it looked somewhere betweent he size of a quarter and a half dollar (horizontally) and Josh thought he heard the doctor say 2 cm (maybe vertically???). The tumor is located right where the speech center of the brain is, (still near the motor strip) and this area also effect thinking and reasoning.
So, what else did we learn? Josh will not be having the type of surgery that we were preparing for. This surgeon is much more knowledgable and said that that type of surgery would be absolutely devastating to Josh....see, Josh's tumor is not a solid block of abnormal tissue. it doesn't have defined edges, it's kind of "whispy" and "diffused" throughout normal brain tissue. there are a few bright spots on the scan, but it spreads out in a way that makes it impossible for them to just open him up and take it out. There are also a lot of blood vessels which make that area more dangerous.
SO he will be having surgery on April 5th (with pre-op appointment on March 31st) and they will be taking a biopsy for a pathologist to study. it will take about a week for those results to come back, but after that we are most likely looking at Radiation treatment.
That's it, that is pretty much what we know. We know a lot more, and we will know even more after they discover what type of tumor it is and what it will respond to the best.
We didn't spend the expected 5 hours with them as those things have been scheduled for the 31st. It was around 4pm (I think) that we called our parents after leaving the hospital and then we headed home....finally getting something to eat for lupper around 5:30 (wanted to get out of Nashville, and then had a hard time finding an exit with good food). We talked a little on the way home, but we were very tired and ready to see our other children (thanks Lisa and Jason---and Mala and Ryan, for caring for our kids and feeding them :-)). Josh slept a little, Kassie cried a lot, we had to stop several times....and there was lots of thinking time.
i may be 'thought-out' so if you ask me something and I don't have an answer, sorry, i'll give you an answer when my brain works again. And if I snap about something or take something the wrong way...once again, I'm sorry, my nerves are kinda fried....on the way home my stomach felt nervous (Josh doesn't understand this) and i felt like I might get sick....just too much thinking.
I do see that throughout this day prayers were being answered....i think we handled the news pretty well...just have more processing to go through, but so glad to have a wonderful doctor who seems to know what he's doing and care about us as people. I watched him watch Josh's face as he delivered the news about his tumor. He and his team where very supportive and ready to help.

2011-03-19T19:33:00.002-04:00

Today it's hard to think or write about anything else...there is one thing on my mind.

I am so glad that Josh had time to get out of the house and laugh and joke with some neighborhood guys, and I did most of what I wanted to do with the kids today, taking them outside for a while, taking them to Chic-Fil-A for breakfast where they got to play for a while. They had an extra long nap as they were exhausted from the day before. We even rented a movie for them to watch (Megamind).
But during all of this, I haven't had any conversations to help vent it, and there's been no comic relief (which is a big part of my and Josh's conversations lately).
Anyway, this day has been very long, but it's almost over. Tomorrow shouldn't be quite so slow as we have Church, followed by lunch with friends, then naptime followed by a time of prayer and potluck. Then it's just me and Josh with Kassie in tow until from Sunday night until we get back Monday.
I'm hoping that i have all the right questions to ask and that we have an outline and timeline of all that is going to be happening.

2011-03-19T13:41:00.000-04:00

have had lots of quiet time today....maybe too much. Now i may take a nap.

2011-03-18T23:55:00.002-04:00

i'm just sitting here and reflecting on my day and my week. This day started out with a feeling of heaviness, I felt it settling in my chest. This came after a long night of tossing and turning. It seems that as the week has passed, each night sleep has become harder and harder. Even my sleep has been restless, as I wake up and realize that literally I have tossed so much that I've stolen all of the blankets off of Josh. He doesn't complain most times. When I wake up in the morning I feel exhausted from the moment I hear the kids, and when I come join them on the couch I am ready to catch some more zzz's.
Today I began the day this way, and I noticed that when I had quiet moments it really didn't matter what was going through my head....maybe it was "what should i eat for breakfast?" or "i should probably change James now" it didn't really matter, if the moments were quiet i felt like I was fighting tears.
Then Josh came home between classes and i handed Kassie off to him so I could spend some time getting ready for the day....showering, doing my hair, putting my contacts in,...even putting on some makeup.
Through that i started singing, I may have changed some words and some melodies, but it was my song to Jesus.
i really didn't accomplish much of anything today, but once I was feeling a little better i decided it was more important to take the kids outside to play in the fresh air than to try to entertain them with some movie so that I could accomplish something in the house. Now tomorrow I will have to make up for that a bit and get some things done, but today this is what was important, fresh air.
Then this evening we had some friends here plan an outting for us with several of our friends here in the neighborhood. They got babysitters so that the kids could have a pizza party here while we went out on the town. What we did may not sound that exciting to most people, but i assure you, with this group of people you could play with toothpicks and have fun. We went to Chic-Fil-A in Pigeon Forge, we had a group of 13 (plus Kassie) so they scooted a bunch of little tables together to make one big table that we could all sit around and converse. After that we went across the street to play some mini-golf. You could tell that they haven't gotten ready for the season yet as far as the mini-golf course went...but that didn't matter, we were having fun. Sometimes it doesn't matter what the activity is, as long as you have the right people. There were many people who weren't there that we would have loved to have along and who would have just added to the love, laughter and community that we shared tonight.
So this evening turned out a lot better than this morning started.
it was a good start to what could be a LONG weekend as we wait for Monday. Thankfully we already have a few things planned, Josh may be watching part of a LORD OF THE RINGS marathon with some guys next door tomorrow. Sunday after church we are having lunch with some families from church and then that evening at 4:30 some from JBC are going to get together with us and pray for us before we head to Vanderbilt Monday.
I have been trying to find what I can about how long it might be after this initial pre-op appointment until when they would schedule surgery. I haven't found anything yet.
Okay...it's Saturday morning already, maybe it's time to go to sleep.

2011-03-18T16:37:00.001-04:00

I just want to know when the surgery is going to be....is it going to be really soon? How much time will we have to prepare...I don't want it to be too much that I over think things leading up to it.

2011-03-17T21:27:00.005-04:00

One thing that I have always wanted to do with Josh is to go on a mission trip(whether that's Mexico, Haiti, Africa or any part of the world).

When I was a teenager I was involved with a youth group that did missions trips every summer. They had different trips for different grades. the summer before 8th grade there was a camping trip that was basically a chance to learn how to work as a team, to create a bond and have a week of getting away from the distractions in life and getting into the Word. The summer before 9th grade we went to WEC International, right new Philadelphia. WEC uses this beautiful castle ---> to house missionaries as they are coming back into the USA. It gives them time to debrief and get over culture shock and jet lag....and I'm sure that there is so much more to it, but that's what I remember. While we were there our job was to take care of the property, to help maintain the facility. We weeded, tarred the driveway, cleaned carpets....and did a lot of that type of work. Then we went into the city one day to one of the Projects that a woman from our church was involved in ministering to, we met lots of kids and invited them to join us on a field trip the next day. The next day we came back and picked up the kids who were given permission to visit a Lancaster County Farm. After we explored the farm with these city kids (who thought that the bus ride was like a roller coaster) we sat down with them to eat lunch and presented them with bracelets with different colored beads, this was our chance to tell them about sin that separates us from God, and Jesus and the gift of Salvation that His death and resurrection offers to us.

Between 9th and 12th grade I had more opportunities to be involved with trips where we did week long Vacation Bible Schools in different areas, including on a Native American Reserve in Canada. Being in Canada was my first experience with a different culture.

When I was in college more foreign missions opportunities were available. i was able to go to a country that is in the 10/40 window and my heart was broken for this people-group, especially for the children who, by that society were considered less because of the circumstances of their birth. But there were these orphanages with loving parents/guardians, the babies and children came into these homes and they were a family. I remember thinking that I wish to be part of something like that.

The next year Josh joined a group that headed to Haiti, and listening to him share about that experience was amazing.

That was the last of our short term missions trips, we've been involved with teaching children and Josh has been in the Worship team for many years...but my desire it to be involved in a short-term focused ministry trip.
I know that there are opportunities all around us to be part of ministry, in fact our major ministry right now is to our children. I just hope someday to be a part of what God is doing in another part of the world with my husband.

Getting past the labels

2011-03-16T17:06:00.003-04:00

So, am I hypersensitive?...probably
It's really easy for some people to think badly about others who are overweight.
Listen up people! every person is different, including the way that their bodies metabolize food...plus some people have debilitating conditions (like fibromyalgia, or bad knees, sometimes even depression) that make it hard to move. I'm not saying that I have any of these conditions, though I will admit that I struggle with depression from time to time.
Anyway, people who will label someone as "fat"....I can't stand that. sure I have fat, and at a higher percentage than I should, but I'm more than FAT, and so are the other people who are labeled with that word. There are stories behind these people and it's so much more than what you can get from a label.
I hate it when people look at the elderly with disrespect...when I look at an elderly person I can't help but wonder about what their lives have been like...I see a person full of stories, and I would love the opportunity to hear those stories.
Do you know who else has stories? What about the homeless...I bet they have a lot of stories...
There are so many labels that we give to people, but if that is how we think of them then we will never get beyond that...
Hey, Jesus didn't humble himself to the likeness of a man to die and take on the sins of only the pretty people, He came that all might have the gift of salvation. He cares for all of humanity, Remember that the next time you label someone, maybe it's time to get past the labels.

As a response to the person who thinks it's easy to make the choice to not be fat...it's easy to make that choice, many times it's hard to follow through, many people don't realize they are on the path to being overweight until they are past the point of the "easy path" For me, I gained a great deal of weight when I was between 20 and 22, and i didn't even realize what was going on. My metabolism had completely slowed down, it turned out that my thyroid was not working properly. then once again when i was pregnant with my first child i gained more weight than i should have....I think many first time moms do this, because it's the one time in your life that you are supposed to gain weight. Well, losing weight is much harder than it sounds like, it seems easy, just diet and exercise, right??? Well, when you add outside stresses and circumstances, it gets even harder. Anyway, that's my story. Losing weight is hard and time consuming, the easy way out is called starvation, we've been down that road before, and it's not worth it.

Sorry, I should have stopped writing by now, but I want to add one more thing, The next time you find yourself wanting to comment on the way that someone looks in a negative way, even if it's not to that person but to someone you are hanging out with, Just don't do it. first of all, sometimes your conversation isn't as private as you think....secondly, you don't know what is going on inside of that persons head.

lots of thoughts

2011-03-15T22:53:00.004-04:00

I remember the day when my parents sat me down, along side of my brothers. and explained to us why my mom was always feeling so sick...i was 17 when i found out my mom has cancer. I remember the shock, I remember the tears. i remember hearing that it would be very soon that she would undergo surgery to remove a large portion of her colon. I remember being scared---both of my grandfathers had died from cancer, and that's all I knew about cancer.
i remember that prom was fast approaching and my mom had "fought" for me to be allowed to go that year. (my first high school dance)
I remember thinking about prom which made me think about all of the other things in life that I didn't want my mom to miss...and I "negotiated" with God. I prayed that my mom would be at my wedding, and that she would be there when I had babies and as I raised them.
That was about 11 years ago. my mom still has cancer, the type of cancer that she has is called Carcinoid Cancer, it travels through the bloodstream and "plants seeds" anywhere in the body. She has had 2 sugeries, the first was removing a portion of her colon and the second was a few years ago, removing half of her liver. If you didn't know, the liver can regrow, and when hers did it ended up with basically the same amount of cancerous tumors as it began with. She also has a spot on her lung. This type of cancer does not respond to radiation or chemotherapy, and at the time of her diagnosis, very little was known about it except that it is a slow growing tumor. (www.carcinoid.org if you want to know more)
i was thinking about this tonight.
You see all of this bad stuff in the world, and really, most of us don't think that these things would really happen in our lives. I see billboards for children who have been missing for years, I hear of people whose babies pass away before they have even had the chance to get to know them, I know of a family who lost their father when all of the kids where very young....the list goes on. And while some people may not have big stories of loss, the truth is that everyone has at least a little tragedy in their lives.
Sometimes when I'm faced with a problem on a larger scale, when I hear people griping about the small annoying everyday stuff it gets on my nerves and I want to call out to them "pity me!" But how wrong is that!?!? I also complain about the little stuff, sometimes that is how I get through the big stuff. And how do I know that they aren't going through something more?
I know that I sometimes get so aggitated with my children that I need an outlet. I know that sometimes it's the little things that get under my skin the most.
I apologize if this has offended anyone. I just don't know what I am feeling most of the time and I never know where my thoughts are going to take me. This week you may see more posts from my as I look for an outlet and the time begins to wind down towards surgery (which we still don't know when that is)
My husband has a brain tumor. Knowing this fact makes each of his seizures more real to me, and I worry when I think that something new could happen because of the tumor and i wouldn't know how to respond. My husband is going to have brain surgery. I have to hold onto the hope that I believe God has given me that he has bigger things for my husband. I believe that He placed a calling on Josh's life to be a counselor, a minister, and that He is bringing us through this, specifically walking Josh through this so that He can expand His ministry through Josh. Do I know what that means? Nope...
Lord God, please heal my husband, Lord walk beside us and hold onto us, give us strength, comfort and peace. Lord, please let my children have their daddy for all of the years and events to come.
okay, that's all i can put on here for now.

2011-03-15T20:11:00.001-04:00

thinking things that will end in tears

i am scared

i hate when my thoughts start to wander down this path, I try very hard to change my thoughts when these ones creep in...

2011-03-11T20:16:00.002-05:00

Just wanted to write a little tonight. My husband is so awesome, he gave me the opportunity to get my hair done today. Getting my hair done is not something that I do alot, seriously, since Josh and I have been married, in the past 5 years I could probably count on one hand the number of times that I have gone to get my hair done. most times I just do it myself and ask Josh to help me with the back. It's very hard for me to spend any money on myself, I'm the type of shopper who will pick up a few things, and then talk myself out of all of them, even when I have something specific in mind, I can buy for other people, but not myself. I have a hard time letting Josh spend money as well, but I've learned recently about blow money, and we've allotted certain amounts in our budget, and with that in mind (josh still asks if I'm okay with him buying things) I give Josh the go-ahead for whatever it is that he wants...and Josh encourages me to allow myself that as well. I remember when we were first married and I was home alone a lot and very lonely, Josh treated me to $40 and a coupon for half off at a clothing store---i still had trouble justifying it to myself, but it was so nice of my husband to think of me like that.
anyway, I have saved up my blow money in order to get my hair done, but the problem I was having was that I needed to have a certain amount of time to go without any kids, not even Kassie, but finally today that time came and Josh stayed and watched the kids, including Kassie who cried for the entire time, so Josh had to stand for about 3 hours with her, and she wouldn't take the bottle, so she didn't eat that entire time either. He is an awesome husband.

2011-03-10T21:12:00.002-05:00

I realized tonight that maybe my desire to get a plan in the process for Josh's schooling is my way of handling or controlling this situation. It's easier to try to make a plan for school or to try to work out the details of childcare or make hypothetical plans for where to stay than it is to deal with the unknown of it all.
It's difficult to get a "wait and see" answer because I want something to be set up...

On our way to the doctor this morning I felt a heaviness in my chest...I think that writing a letter to a Dean about our situation really started opening up the reality of it....it's like a week and a half until the 21st, our first trip to Vanderbilt. It seemed like every song playing on KLOVE was playing just for me. "I will praise you in this storm" was just one example of this.
It was nice to end the day with the friend who has seen me through so much. I'm glad to have another chance to have visited with her and her family before they headed back to PA. I truely believe that God was completely at work when they made these plans to be here with us at this time, they had no idea what we would be going through, but God did.

Some things that I am hoping for right now (in a daydreaming type of way). I hope that we are able to spend a great chunk of time in PA this summer to have time to spend with our family and friends there who are so important to us and who we know are walking with us in prayer and support on this journey. I also hope that at some point when Josh is healed that he and I (maybe the kids too...) would be able to go on a big trip, somewhere special...maybe even like a second honeymoon.

Okay, I know I have so much more to say, but for now, I have to put the kids in bed.... so that's all for right now, more to come soon!

2011-03-08T15:14:00.002-05:00

I read today about the incredible healing of a woman who 10 years ago was diagnosed with a malignant brain tumor and underwent surgery. She wrote about how the night before surgery she considered writing goodbye letters to her children, but she was filled with a peace. Now 10 years later she is officially cured as they were successful at removing it completely and there has been no regrowth. She said that it takes 10 years for it to be considered "cured". She also said that the recovery from surgery was 6-12 months...that worries me.
I mean from time to time what is worrying me changes. And I trust that God is walking us through this.
Wondering if Josh will be able to continue school over the next year....and if not, what are we going to do about income and where are we going to live. If we left TN we'd have to get all set up again with insurance, and doctors and life. If we stayed in TN we might have to leave JBC campus, find a place to stay/rent...find income. Would Josh stay home and I try to find a job?

for anyone who's been worried about me researching brain surgery, I'd like to explain what I'm looking up, not trying to scare myself...just want to have an idea of what life might be like after brain surgery....how long will it be until Josh is ready to get out of the house? how long until he can consentrate and study and attend class? How long until life seems normal again?

2011-03-05T16:09:00.002-05:00

the one thing that I really want over the next 2 weeks is more time with Josh, it's really as if life is keeping us apart right now. the second thing i want is for Josh to be able to keep up with, maybe get ahead in, and figure out this semester.

Right now, when I'm at home its easy to feel the depression with what's going on. I can't even imagine what's going on inside of Josh, he is so strong. He's never been one to hide his emotions...except maybe when he's angry, but right now he lets me do the talking.

so, what emotions should we expect through the next couple of months: Shock, Denial, Guilt, Anger, Acceptance, as well as helplessness, fear, panick, sadness, loss of control and anxiety. and these emotions can come in any order.

the diet

2011-03-04T21:48:00.002-05:00

we started a new diet a little over 2 weeks ago. At first it was great, lots of salad, some fish---I'm told that I'm good at fish, that's really good to hear, but all I do is cook fish with a little water then sprinkle on some seasoning.
So after the first week I was down 4 pounds, seemed quite awesome. Well, something happened that second week that made me feel more and more hungry and crave more and more sweets. At first we didn't even have sweets at home, but a trip to the grocery store changed that. I must admit, I am an emotional eater. There is no denying it, i get emotional and the first thing I want is cookie dough. Josh hears me say this all the time....as we drive past the grocery store, just about how much I want cookie dough. Though, I am a little proud of myself that i have not purchased any cookie dough since the start of this diet. But I seek out the closest thing I can find....poptarts, anything chocolate....anything sugary as well as other comfort foods.
So since then I have gained back all 4 pounds. I'm at a point now where if I gain anymore I will REALLY be going backwards.
How do I balance this? Seriously...this is hard. The one thing that I want to do that I think will help on all counts is to get out and exercise....this is easier said than done when you've got three kids and your husband is either in class, studying, at work, or doing praise team for church. There have been times that I've been able to get out of the house while he studied, but with 3 kids that isn't as much of an option, so far I have to take at least 1 of them with me, and it's gotta be during naptime for him to actually be able to study.
Okay, so after that^^...
I'm sure that I'm not the only emotional eater out there...and that many of my friends who might read this have at some point changed their diet to try to be healthier....if you have any tips or tricks that worked for you (especially if you are an emotional eater, or a chocolate-craver) could you please share?

2011-02-23T14:01:00.002-05:00

I know that it has been a while since I have blogged. And truthfully I'm not sure how much I can write right now....
First I will give you as much detail as I can about what's going on medically though.
On October 4th Josh had a Grand mal Seizure, it came out of nowhere and was terrifying to witness. Since that time we have been left with very little in the way of answers, just that there was a spot on his brain that was "undetermined" as to what it was. By early November Josh was having seizures every few days. These were different than that first seizure in that he didn't lose consciousness and the convulsions or shaking that he did was much less severe and mainly in his right arm and face. WE were scared by these seizures but over time have learned to live with them as part of daily life as they have continued to increase to daily, then several times a day...lately he has had upwards of 7 a day. We stopped talking about it so much because Josh didn't want everyone to know everytime he had a seizure.
The diagnosis of a brain tumor is not a complete shock to us. Back in October it would have been, but we've had months of living with the uncertainty, and every way that the doctor described a brain tumors symptoms matched perfectly up to Josh's symptoms...
However thinking it might be a tumor and hearing that it is and that he'll need surgery...two very different things.
By tomorrow we should hear from Vanderbilt Neurosurgeons and have Josh's first appointment set up to map out his brain and prepare for surgery. WE don't know how many of these appointments he may have before or after surgery, but according to the dr we talked to Tuesday it could be as soon as a couple weeks until surgery. This is all happening fast, and we haven't had time to wrap our minds around it.
---vanderbilt is the place to go because they have the right technology for this kind of surgery...they need to be careful about getting the right stuff out and not the good brain tissue or it could cause paralysis or weakness of his right arm, as well as his face and may disrupt his speech....
Please pray for healing for Josh, for skilled surgeons, and for the emotional, spiritual and financial impact on our family.

2011-01-28T21:00:00.002-05:00

Throughout each day I think about maybe 5 different things that i could write about, and so often those things are forgotten...
Anything can trigger a line of thoughts and memories that i think would be worth writing down either for myself or to share with you, I will think through an entire conversation. is this normal? probably, but what might not be so normal is what I do as i think....I tend to move my lips as I think, sometimes I even whisper my thoughts. My husband thinks this is funny, and often questions me on what I'm saying, sometimes i don't even remember.
But one thing that I do remember is what I was thinking this afternoon. I was watching "everybody loves raymond" and it was an episode where the family was visiting Italy, and in one scene Raymond and his mom go for a walk in which his mom talks and talks and talks about everything under the sun. As I watched that scene I longed to have someone to talk to like that.
I don't want to say this wrong, of course i can talk to my husband like that, but we don't get the opportunity too often. (sidenote...right now I hear him singing with K and J as he's putting them to bed) Most of our time together right now is all about taking care of the kids.
Other than my husband, there are only a few people in my life that i've ever had that kind of relationship with. my two besties and my mom. All of which are in Pennsylvania.
Everybody needs to have someone that they can unwind with, and I am in some serious need of unwinding time.
on that note, these are my future "unwinding" times that I'm looking forward to.
In February we are planning to travel to PA (if our van holds up for us) for my sis-in-laws wedding reception. It will be a short trip, but there might be an opportunity.
Then in March one of my besties is coming this way and I am so excited for a chance to spend time with her and share East TN with her.
Then, probably this summer will be spent in PA, and I will do everything I can to get lots of time in with my besties AND with other friends and family.

But before all of that, I really hope to get some time with my hubby that is not all about the kids.

2011-01-25T19:05:00.003-05:00

Wow, what a crazy life.
So, as of today I've had 23 days with Kassie in my arms. This baby girl can sleep through anything...our house is almost never quiet...only between the hours of 9pm and 7am. Although she can sleep through anything, once the house quiets down her little eyes open up and she is ready for some wakeful time. Because of this, we have adopted the "family bed"...I've done this before, Kosette spent MONTHS in our bed...in fact, she didn't spend the whole night in her own bed until she was over 18 months old. James spent several nights, and many half-nights in our bed...but i learned from Kosette...and began putting him in his crib when he was much younger. i don't remember how many months it was, but I know that for a majority of his life he has gone to sleep really easy, just laid him down and he'd fall asleep. That is what I'm hoping for with Kassie. It's just so hard to put her down---not knowing if she is my last baby, I want to hold onto her as much as I can. I love cuddling with her, and smelling her sweet baby smell. She looks so much like james and Kosette as newborns that it's just like a continuation of their baby-hoods.
Many of you have heard about Josh's recent seizure activity...and I know that there have been some questions about what his seizures are like. He'd definately be better at explaining it. Basically he feels this tingling sensation in his right hand, and sometimes in his mouth or the right side of his face, then he experiences vertigo and ringing in his ears, his depth perception is way off. Also, if he tries to talk, he can't really form words or phrases. He will lay down and close his eyes, and put his hands behind his head. if his hands don't make it behind his head, the right arm (and sometimes the left arm) will shake. he also will have noticable twitching in his mouth and eyes. We've also noticed some twitching in his neck from his throat.
I know I've written this before, but with all of the questions lately, I thought I would write it out again. The last week of December was the first time that Josh had more than 1 seizure in a day. On the day that Kassie was born he once again had 2 seizures in 1 day. Since that time his seizures increased to almost daily. There were several days that he was seizure free, but there were also days with 2 or 3 seizures. The medicine that he's been taking has seemed to help in this way, the seizures that he does have don't last very long, and he has had an almost immediate recovery when they are over. We will head to the doctor on Thursday morning to try something else to stop these seizures.
Now, about the children.
Most of the time we are asking or telling them to be quiet...like I said before, it's always noisy around here, so that is the one big thing that we ask of them. We were able to get outside yesterday, which allowed them to run off some energy. I can't wait until there are more days like that. Of course, now Kosette is coughing...oh please oh please, don't let her be sick.
i was really hoping that by Wednesday I would reach my goal weight, on Sunday I was only 2 lbs away from it....and then the last two days my weight went back up to 4lbs away and has stayed there...it saddens me to think that the time of fast weight-loss is over.

2011-01-14T19:57:00.003-05:00

It's been a while since I posted regularly here. Part of me kinda thinks that it gets kinda boring or annoying for me to post about the same things over and over again. But, if you don't want to read, no one is making you...so...I guess it's okay for me to write about whatever is on my mind.

the last three weeks have been a bit crazy, but also very good and very tiring.
My parents arrived here thursday before Christmas. I very much enjoyed having my parents here, i miss having them around. They helped me get out and about to walk and walk and try to get me closer and closer to labor and meeting my sweet little Kassie. We enjoyed Christmas together, we were able to get out to a movie---Narnia, and to my surprise both Kosette and James sat through the entire movie! (Kosette fell asleep)
We spent over a week preparing the house, doing all of my nesting, and walking. When Kassie was born, my parents helped out a lot taking the older children out and keeping them entertained while giving me time to rest. It was bittersweet to see them leave, we miss them and miss talking to them everyday, and I know that it was difficult for them to go from seeing us everyday to not at all....and then there was the sweetness of the excitement of learning what our family is like with 3 children.
Josh's parents then came in to Gatlinburg and we spent many days and nights with them. It was so great to see Josh laughing and getting goofy. i had my time with my parents and then josh had his time with his parents. We all enjoyed spending time with them, and we watched several good movies,...one of my new favorites is "Killers"...such a good date movie! I recommend this movie for couples who enjoy cute romantic comedies as well as action movies.
I spent much of the time very tired, and trying to figure out what my body was doing as it's transforming from the pregnant state to the non-pregnant state that it's in now. Apparently I also developed a UTI.
Saying goodbye to them was also bittersweet for the same reasons.
Coming home, we were very tired, so dealing with our children can be tough...they may not be doing anything wrong, but just having a noise level that is a little bit loud, or doing the same thing over and over again, it's so hard to not snap at them...
this morning as I was on my way to the dr with all three children in tow I had a lot of thinking time on the 40 minute drive. As I thought I reflected on the fact that i haven't been laughing much lately. My husband can be a very funny man, and yet the things that would make me laugh at other times i have barely cracked a smile for in the past week. I was thinking about this and about how my hubby has told me he loves me every night, and i can see him watch me when we lay in bed and I'm trying to get Kassie to fall asleep...these things have brought tears to my eyes...I love the tenderness that I'm getting from him.
Throughout the rest of the day I've been struggling with being overwhelmed and "unable to cope"...it's easier to not really see these things in myself when other people are around to care for the children, but once I'm on my own, it really comes out.
anyway, the thing that I found really interesting is that I was thinking about these things during my ride, and when i arrived at Kassidee's Doctor, they handed me a survey that I had to fill out before they would see Kassidee. It was a Postpartum depression survey, my answers concerned them.
the nurse asked me about how I was doing and I mentioned that it could be partly because I haven't been feeling well, the bladder stuff, and so she encouraged me to see my OB again. After talking to the OB, they prescribed an antibiotic to combat the UTI and scheduled me to see them Monday.
When the Doctor finished checking Kassidee out, he asked me if i was a christian and about what church I attend..then he asked if he could pray for me and he did right there. honestly, throughout the evening I've felt much better, at least this evening. I had the opportunity to go to CVS by myself and had praise and worship on the radio, tthat was really nice.
For those of you wondering how Josh has been doing. Well, he's going to have to get in to see a dr soon, we just need to set up that appointment. I've mentioned on Facebook that he's had "issues" with his throat...well, it's happened more and more often, he tries to talk through it sometimes and it really as started making me worried that one day he won't be able to talk. He's also continued having seizures. It seems that the medicine makes the seizures smaller, less symptoms for shorter periods of time, but it hasn't decreased the number of seizures that he has gotten. It will be interesting to see what the February MRI shows.
Well, that is a lot of what's been going on in my mind, now I'm going to watch a movie with my hubby.
By the way, does anyone have any suggestions of good tear-jerker movies? i'm really in the mood for those types of movies to watch at home...

2011-01-04T20:57:00.003-05:00

I am so thankful to have my parents here. It has been completely awesome to not have to worry about things. Also, to have my mom in the labor and delivery room, though they went out for the actual pushing part, my mom was right there watching my contractions on the computer screen. My parents have taken the kids out and given me time to relax in quiet peacefulness. My parents have helped so much around the house, and my mom has handled all of the meals and kitchen stuff for the past week and a half. We have a few more days with them here, they are still our drivers (for Kassie's dr)....
They are both going to be exhausted when they get home, they have definately had their hands full!

Kassidee Lorelai, January 2, 2011

2011-01-04T17:56:00.003-05:00

Right now I am snuggled up on the couch, in my quiet house as everyone else has gone out for a little while, and I have my baby girl laying across my chest and snuggled under my chin. I love it!

Over the past week as everyone else has reflected on the year 2010 and tried to start fresh with new goals in 2011....i hadn't given any thought to all of that. I have been completely occupied with having a baby :-)
There are several reasons that I began at 36 weeks to "get serious" about trying to help things along. I am not going to go into details here, and probably 90% of you will never know why I felt limited on time for having my baby girl, I'm just going to say, there are reasons that the timing of Kassie's birth seems absolutely perfect for me. (though a couple days sooner may have been just as perfect). We began praying for perfect timing a while back and every night we would pray for Kassie's health, that being MUCH MUCH more important than any time tables that we had in mind.
Well, many of you know that I had experienced contractions early in my pregnancy. It's one of those things, the more times you are pregnant the more you feel them...the problem is early in pregnancy, you don't want to be feeling stuff like that. Especially as this pregnancy was the first pregnancy where I had any spotting at the begining, and then at 10 weeks i was told that my hormone levels were off and I had to take progesterone until my second trimester so that my body did not try to abort this baby.
As i hold her in my arms and think about that, there is an emotional well brimming at the edge almost overflowing.
Anyway, I had these "Braxton Hicks" contractions all throughout my pregnancy. During Josh's big health crisis, i also dealt with some strong contractions as my body responded to the intense emotions. But for the most part, the contractions were just there, and i kinda got used to them...until i hit week 35, then something changed. The intensity of contractions grew, they were still irregular, but I'd have them often. Being that I have been in labor twice before, I knew kinda what I expected labor to feel like, so i didn't feel the need to get checked out based soley on these contractions.
Right about the time i was 36 and 1/2 weeks my parents arrived. We began walking everyday (briskly). I ran out of my red Raspberry Leaf Tea (doesn't induce labor, just helps certain muscles work better). We bought an exercise ball for me to sit and rock and bounce on. We did all of the natural things you can do that are thought to bring on labor. From my appointment the day my parents came to the next one a week later i went from 1cm dilated to 3cm dilated. At my 37 week appointment I discussed some of my timing concerns with the dr. One of the big concerns being how we were going to get to the hospital and childcare during labor and delivery. My dr (who is awesome by the way) told me that things looked favorable, that because my body had already changed, that is like a "sign" that my body gives (by God's design) that baby is probably healthy and ready to come. So he said that IF I made it through the weekend and if things had progressed more at my next appointment (that would have been today 1/4/11) that they would set me up at the hospital and see if they could get things started. (basically by stripping membranes because I am/was a VBAC and most inductions would be not an option for me)
Now I didn't want to be induced really, I wanted my body to do things on it's own, but because of other circumstances, the idea of this was MUCH better than the other option.
So, all day Friday, on New Years Eve, i actually felt like things could kick off at any moment. We went to a game night that evening, and everytime I laughed I felt like my water was about to break...Kassie was super low that night. i had several "signs of oncoming labor" that women tend to look for when they are reaching the end.
By Saturday morning I felt as though she had pushed herself back up into my rib cage, and like all of those impending labor "signs" had gone away. It was a rainy morning, so i couldn't go walking outside, so we loaded up the car and i decided to go invest in some more Red Raspberry Leaf Tea. Off to the grocery store, through the UT strip and as many bumpy roads as we could find...all the while pushing pressure points on my legs and hands. from there to the mall to do some walking, drinking some of my tea.
Then we came home, and I sat down for a while and didn't feel anything. I was truely bummed. I felt like all that I had done was pointless....and honestly I was thinking about some caster oil.
i read peoples comments about God's timing, and honestly was a bit irritated. Of course it's all in God's timing, that's what we'd been praying for. But i wanted Him to bless my timing. Seriously, I was annoyed and I was tired of trying. i did the only thing I had left to do...I just tried to relax. I talked to God about my annoyance and aggitation. i relaxed in a warm bath...i laid in bed and I prayed that I would just accept that I couldn't do anything.
As I slept that night, every move I made was so painful, I felt like my belly would pop at any moment. i kept waking up thinking something was different. at 4:13 a.m. i rolled out of bed to use the bathroom. (sorry if this is tmi) i was half asleep, and I went and relieved myself...and sat there for a moment and then suddenly there was this short steady stream, and I couldn't tell where it had come from, it didn't feel like I had peed it out...but I couldn't tell, i was half asleep...but that woke me up. I didn't feel like I had to pee anymore, but I pressed down and more trickled out....i did this over and over with the same result each time. Not sure what was going on, I went back to bed. At this point the activity in my belly picked up quite a bit and i couldn't get back to sleep. so at 5a.m. I went back to empty my bladder and try again, I peed as much as I could, didn't feel like there was anything left, and then I began pressing down again, and each time the results were the same, a trickle. So I called my dr, not knowing if this could in fact be my water breaking or if it was just some pee that got stuck. my dr's reponse was funny, "you've made a good case for it being your water, and since AT&T hasn't developed the technology to be checked over the phone, you should make your way to the hospital"
We pulled the kids out of bed and got everyone packed up for the hospital. i wasn't having contractions at this point, so I wasn't feeling a need to rush.
When we got there, they did a test to see if it was my water. it the paper stayed yellow it was not, if it turned blue, it was.... my strip turned green! It was inconclusive. They also checked me and I was still only 3cm dilated. they had me stay to do 2 other tests, and I was hooked up to the monitors. On the 40 minute drive to the hospital I had begun having small contractions. by the time the monitors were on I was still having small contractions, but they were 3 minutes apart.
When the dr arrived to check me, they didn't find any more proof of water breaking, but when she checked me I had dilated to 4cm. At that point she stripped my membranes and sent me to a delivery room and made arrangements for the epidural guy to show up and she was off to church.
As i entered the delivery room i noticed that contractions had definately picked up in intensity, pressure was building. the guy came to put in my epidural (this is the first time I've done an epidural, after discussing it with my dr, we agreed that this was a good thing to do for my VBAC in case something would happen and i'd be taken to an operating room in a hurry)
the epidural was interesting. I was told that I was extremely flexible for a pregnant woman...This electric shock went down my right leg, and that was the last that i felt of it for almost 24 hours.
my legs both felt like they were asleep, i could still use my left leg to adjust myself, but for all the trying I did, i couldn't lift my right leg.
and the contractions I had been feeling seemed to vanish. I was so worried that i couldn't feel them.
the children were able to come hang out in my room (with noni and papa) which got to be a bit hectic at times.
i began being about to feel when I was having contractions, but they seemed about as intense as the Braxton Hicks that i had for weeks.
Around 3pm they checked me and I was only dilated to 5cm. I was DISAPPOINTED. With how fast everything happened for Kosette's birth, this seemed so slow. The epidural definately slowed things down. At that point the dr broke my water, hoping to pick things up a bit. around 4:30 they added some pitocin to the I.V. (but they never checked me)
I think that they were expecting me to complain about the contractions in order to know that I was getting close. The contractions were definately being felt and everything going on in the room irritated me. I was expecting to feel the contractions even more than I was, and Josh told me later that he expected me to be crying and screaming in pain. Instead, I was just really annoyed at what others were doing to occupy their time while I was trying to have a baby. (My fault that I didn't verbalize to them what I wished they'd be doing)
at 6pm the dr came in to check me (first time since 3pm) Josh had just stepped out of the room to take a walk. As the dr began checking me her eyes got really big! She told me to give a little push and as soon as i did she told me to STOP! It was at that point that all of a sudden i felt the pressure, i could feel my bones separated and I wanted to just start pushing (I didn't feel it painfully like I needed to, just like I could feel it would only take a little bit and then my baby would be in my arms.)
my dad had to call josh to get him back and as soon as he was in the room and the dr was all dressed and ready with her lights I started pushing. 3 big pushes and there she was! my beautiful, tiny baby Kassie. 6:12pm, january 2nd, 2011, 6lbs 8oz, 19 inches.
Josh tells me that during my last push the dr pulled the umbilical cord from around her neck and then she just popped out!
It was definately a very different experience from my last delivery, much quieter...and i could feel all the good parts :-)
Okay, I just spent my whole hour of quiet/alone time writing this. i hope that you enjoyed reading it!

2010-12-30T20:58:00.002-05:00

today has been a day with a lot going on....maybe not all around me, but definately inside of me. Baby girl has been stirring quite a bit. And my contractions have gone from 5 minutes apart to 3 minutes apart to 10 minutes apart....and I'm not really sure how far apart they are right now, what i do know is that these contractions feel more intense than even the ones I had yesterday....which kinda gets me excited that things could start at any time.
Tomorrow is the last day of 2010...wonder if it will be her birthday.
I'm really excited about meeting my baby girl, holding her and spending time bonding with her and her with Josh and the kids.
I'm nervous about labor....about the VBAC and such, have that little worry in the back of my head that something could go wrong. I just pray that when the time comes that God grants me peace with excitement, and that everything goes smoothly, that everyone is healthy. I was told that if I changed my mind about the VBAC they'd do a c-section, no problem, even a last minute change of mind is ok :-)
Ok....going to go back to trying to time contractions (I grow tired of watching the clock...just want to go have my baby already)

2010-12-29T17:48:00.002-05:00

I know every mom who has reached the end of her pregnancy and is just waiting for labor to begin feels this way.....but I just want to have my baby in my arms.
i've been praying all day that it'd be today....I got a great nap this afternoon (with lots of little irregular contractions the whole time).

2010-12-23T15:31:00.002-05:00

I've been feeling so much better today than I did yesterday...and because of that i've been trying to get a lot done....then as a result of that I feel drained, and a little icky.
I just had a reminder of how little i've done lately. trying to pick up after everyone, I found some of kosette's stickers...these were stickers that she was given for her birthday with a whole bin of things to use for crafts. And since her birthday, these stickers have been the only thing i've allowed her to play with. I really wanted to sit down with her and do projects, but the bin sits there and it taunts me about how useless I've been.
Then, just trying to catch up on the household stuff reminds me once again about how far I've let it go. There's no excuse for it, being 9 months pregnant is not a good excuse, it's an excuse that can be used from time to time, but not good over a long period of time....
i've been using it too long...and the reality of it is punching me in the face right now.

2010-12-22T21:28:00.002-05:00

If you have seen me on facebook at all today, you'll know that i've been sick. Being sick is never fun, i HATE being sick, sickness is one of my biggest fears....but being sick at 9 months pregnant is an extra bit of not funness.
honestly, when this began hitting last night I thought that it was part of my body going into labor. i figured i'd try to sleep through as much as i could...and after tossing and turning all night and then coming to have new symptoms in the morning, as well as Josh not feeling well to his stomach, and kosette having told me last night that her belly hurt....I put all the clues together to realize that it was in fact a stomach bug.
i've felt pretty awful all day, but thanks to Josh was able to take 3 naps. i've spent the whole day on the couch (and i'm worried about how my night is going to go as a result of that)
The discomfort and pain in my stomach and belly are very hard to distinguish from the contractions and cramping that i've been experiencing....it's just a big ball of pain and discomfort and queasiness and bubbling....
i have begun feeling better, still have that pain and discomfort and such, but the two main symptoms have faded
Through that almost sleepless night, I began realizing more and more about how scared i actually am about the upcoming birth of our baby girl. i'm still excited to meet her, but it's the process that is scaring me. And I know i've done it before...but i'm still scared.
I am glad that as of tomorrow night we will have a couple weeks with my mom and dad, built in babysitters and drivers.

2010-12-16T11:54:00.001-05:00

i feel very round all over...my face really looks round.
i keep reminding myself that i'm only about 7lbs over my prepregnancy weight and i'm 9 months pregnant

2010-12-16T09:30:00.004-05:00

people can be broken.
sometimes broken is good---when it's leading us to HIM---, many times it's bad. sometimes it's both.
bones break, blood vessels break....our physical bodies can break. These breaks can be quite evident, or they can be hidden away, but even when hidden, there is evidence for those who are paying attention.
the breaks that are harder to see are those emotional and spiritual breaks. These can be hidden under far more than a layer of clothes. There are some who don't hide these types of breaks, they are transparent, and usually they want healing. But many of these breaks are tucked away deep inside, people try to cover them up or ignore them...many times they deny that these breaks exist. Even when they are hidden, there is still evidence.
Are we looking at the evidence? are we brushing it aside? There is a world of broken people surrounding us, here is my big question....are we making it better or worse?

It doesn't take much to make it worse, harsh words, neglect, or just an uncaring spirit....there are so many ways to make it worse. Do we see the pain that we cause others?
here is another big questions...what can we do to make it better?

(this entry didn't go the way that I thought it was going to...but this is where it went)