Matt's Back At School

We have been so busy this summer down at our cabin that we have lost track of Matt's blog. I guess that's a good thing though. Matt is back to school and doing well. He has all A's and 1- B. He has a great team at Bonney Lake High to help him readjust. They have him in mostly 9Th grade classes but a few 10Th grade classes so he can be with his class. Matt now is enrolled in drivers ed, and drives with mom every evening. Boy if you could see the smile on his face it glows.

Pictures of Matt Being Matt and Loving it!

Matthew has 1 more year till he can full fill his life long dream of being a Fireman. Of course he has to start as a volunteer first.

Really Busy Trying To Keep Up With Matt

Matt's doing great! He is 115 pounds now and gaining muscle. We saw a growth hormone specialist to see if we could give him shots to boost his growth, but the doctor said that it could possibly trigger a relapse in ALL Leukemia. We immediately opted Not to take that chance. We will just hope for the best. Matt hasn't grown at all for 2 years. Matt is really excited to get back to school and be with his friends again.

Matt's on track now

Matt is going to enjoy his summer with no limitations on food. The sad thing is the rest of the family is gaining too. Matt weighs 105.2 today. He is enrolled in his high school for next year. He will be repeating the 9Th grade. He will also be on a IEP program as he under went alot of testing and they came to the conclusion that he has Cognitive Disorder including challenges with Processing speed and Information Processing, Sustained attention/ attention to detail, Executive Function/ Efficiency, Academic skills reduced from pre-illness levels, Anxiety Disorder, and Adjustment Disorder with Depression. With all that said he is ready to go back and we are confident that the Sumner School Dist. will not let him fall through the cracks Academically.

Weight Problem With Matt

Matt had his endoscopy and everything looked good. We sent samples to SCCA to confirm. The top dogs their confirmed that Matt dose have GVHD ever so slightly in his stomach. They are putting him on beclamethazone again to clear it up. Not treating it would make things worse. They feel that being on this steroid will help clear it up so it doesn't spread any further. We changed Matts antidepressant and also put him on a appetite stimulant drug to help put the weight back on to a more normal level. last week he weighed 100.2 lbs. this week he weighed in at a whopping 101 lbs. YEA MATT!! keep eating.

New York City, Live On Set, WOW!

Why Can't Matt Gain Weight?

Howdy everyone, Matt still is hoovering between 98 & 100 lbs. We are unsure why he cant gain any weight. Today April 29Th we went to Mary bridge to see Dr. Irwin.He had some ideas that might be causing it. One is that we gave him so much meds & ect. that his stomach quit working with his brain, or It could be GVHD, or it's depression. Mom spoke with the nutrition team and also one of Matt's phycologist, I'm thinking it's depression more than anything else, at least I'm hoping so.
Matt also talked with his phycologist and his Dr. and by the time we left he was feeling better and smiling again. He even gave all the nurses a hug before we left.
Dr. Irwin says we don't have weeks or months to figure this out or Matt will have to have a feeding tube put in. OK take a deep breath,everything is going to be fine.

Matt's Doing Better

We had Matt's PICC line taken out last week. He is doing better now. The shingles are gone. Yea! Matt is trying to get his strength up now so he is playing golf witch he loves, and he got the green light to ride his 2 year old NEW motorcycle again. He took classes to learn how to use a clutch just before he got sick. Matt's other motorcycle a 11o auto Suzuki is now Nicole's. Matt is still losing weight though and that scares all of us. We have tried everything, he just seems not hungry. If he dose eat, it's small portions. As of April 14Th he weighs 100 lbs.

9th Admit to Mary Bridge Hospital.

How do you know that the hospital staff likes you or not? They keep a stethoscope with your name tag on it for when you come back.... We love the staff at Mary Bridge!

Matt started with a light rash Saturday night, and by Monday morning he had 1 blister. We saw his oncologist and they upped his dose of Acyclovir but by Tuesday morning they were really bad so they admitted him to the hospital for IV Antibiotics and a round of really high doses of Acyclovir, and IV Pain meds. Matt has Shingles. Very common in BMT patients. The problem is that it can easily go to Hepatitis or Pneumonia.

Yes I did say IV. Yes Matt had to have a PICC line put back in his Left arm. Mom & Dad are very worried about the Line but hope things will be OK.

When people have Chicken Pox as a child it stays in your nervous system for life. It can come out in the form of Shingles at any time, but only picks on the elderly or Immune suppressed people. It is Very painful and takes quite some time to get over. The plan is to get Matt out of here late tonight or Friday, then continue the IV medications at home. Hope you all have a good Spring Break as I think we will be staying close to home for now. Thanks for all your prayers and moral support. It seems that when Mom gets really tired she breaks down a bit, then my friends pick me back up and off I go again. Thanks to all of You especially my good friend Diane. Love Lynn & Matt

Fun In New York City!

We had a blast in New York. We went to Time Square,Grand Central Station, Rockefeller Center, St. Patrick's Cathedral, Statue of Liberty, Ellis Island, FAO Schwarz, Carriage ride through Central Park, The Empire State Building, and of course no trip would be complete without going to Hershey world and M&M world.

The main event and Matt's wish came true on Tuesday the 10th of March when a Limo picked us up and took us to the taping of Emeril Lagasse. The extra bonus was that he is teaming up now with Martha Stewart. We were on a live show and Matt got to eat and share with his family a plate of crawdad creole recipe that Emeril made. It was fantastic! Matt and family meet with Emeril before the taping and he sat and talked with us for about 20 minutes. Emeril gave both Matt and Nicole lots of gifts. Even though Emeril isn't supposed to take gifts, Matt gave him a couple of his favorites he likes to make. What great memories, Thank You Make A Wish.

Matt's Make A Wish Send Off Dinner

We had a great time at Stanley and Seaforts for Matt's send off dinner. Matt chose Rick, Nadlae, Bailey and Jacob Ainley, 4 close Friends from Granite Falls to enjoy in the occasion. Tomorrow morning we will be heading to NY to meet and be on Emeril Lagasse's Cooking show. We will be in NY for 4 day's and will update the blog with pictures and all the fun stuff we will be seeing when we get back. See you soon. Love Lynn & Family

Good Times At Lake Limerick Club House

Surrounded By Love

Matt & Family would like you to know about Deb the Executive Chef at our Lake Limerick Community Club House. Deb has been another great supporter for Matt, she too is going through cancer treatment. They both are doing well and are a great support for each other. Matt really looks up to Deb because he too wants to be a Chef someday. Deb and Matt plan to go to the Culinary Arts School in Seattle soon to watch the young Chefs work and eat there food.

One Valentines Day the Club house was all decorated nice for the occasion. They had a special table for us because it was Matt's Re-Birthday, that is when you are 1 year post transplant and we celebrate his new rebirth. I guess he gets 2 birthday presents now since he has 2 birthdays.:) They had balloons for Matt and Nicole and Deb made Matt a special chocolate cheese cake just for him to share. We are happy to be involved in such a great community. Love Lynn & Matt

BEST NEWS YET!!!

Long time friend Bailey was one of the first to hear the news. Matt is Cancer Free. SCCA called us to tell about the great news last Friday. Their is one set back though, Matt wont be able to ride his dirt bike for a while because he now has 4 compression fractures in his back. There have been many people that were of Great support for Matt through his journey but even though Matt didn't email Bailey back he did enjoy reading her daily journal. Matt had several friends that called and tried to talk to him, some days he would talk and some he didn't feel well enough. Matt is thankful of the good friends that he has that stood by him through the good days and the bad days. They say things happen for a reason, well I can tell you that all of this has brought our family and friends closer together. We have more patience and understanding for other peoples feelings and needs.

Reflection on Seattle Childrens Hospital

One thing I would like to add, when Matt and I stayed in the hospital last Tuesday it was great seeing all the doctors and nurses (male and female) coming up to Matt and giving him big hugs and the smiles on their faces just made the room glow! You could just see how delighted they all were to see Matt in such good health. They were very happy as we were to see them under good circumstances. That makes their day complete.

On the other hand Matt & I were their so long that it felt weired walking down the halls. I kept looking for someone that maybe I new back then. We got to know alot of people. Some were lucky some not. I still think and follow their postings hoping they are doing OK. We have a special place in our hearts for everyone we new and our lives will never be the same. We will never take things for granted and truly live each day to the fullest. You never will now when the rug will get pulled out from under you, so live each day thankful. Love Lynn

1 week trip to SCCA

WOW! that's all we have to say. Seattle is so on top of everything, of course these are the best of the best doctors in the nation! Monday started with 7 hours of appointments back to back. Tuesday we had xrays and the bone marrow and skin biopsies. Tuesday night we were admitted to children's for a growth hormone study. Boy that was fun they took a blood draw from Matt every 20 minutes for 12 hours straight. Matt's blood pressure dropped to 56 over 34 so it took a little extra time to get released. Wednesday we saw the eye doctors, dentist. Thursday was a day of rest. Then Friday the 13Th we had our consult with the team. Not all the tests are back yet but everything looks good, with the exception of Matt now having a 4Th compression fracture in his back. That's T7-T8-T10 & T12. No more snow sledding for him. When we get the good news that he is cancer free we will post that. See you soon exhausted Matt & Lynn

Big 1 Year Post Trip To Seattle

Well the first day was grueling, 9 appointments back to back that took 7 hours with out a break! We had some fun after those appointments, yes we did. I'll update with more info when I catch my breath. We are spending the night at Children's for a growth hormone test. I'll have more info tomorrow when I can maybe rest. We should get home for the first night home by 6pm Wednesday. enjoy the pictures. Love Lynn & Matt

Starting the new year off on the right foot.

Well we did have alot of fun at our cabin over the Xmas break, there was about 20 inches total of snow in Shelton. We went on the golf course to go sledding. We didn't have traditional sleds so we improvised with knee boards and kayaks, what a blast! Matt did the polar bear plunge on Jan 1st with his Dad and Sister Nicole. The ice was so thick on the lake that they had to break a whole to jump in with shovels. Mom took the pictures, ( I'm not stupid it was cooold ).

On the down slope to our week, we sat down with Matt and we all decided to withdrawal him from WAVA on line school, and have him concentrate on his health for now and next September he will have to redo the 9th grade. He is disappointed not to graduate with his class but he understands the BIG picture for now is his health. We liked WAVA even though some of the teachers didn't quite understand what he was going through. Matt is still loosing weight, he is down to 110 lbs.

Thanksgiving at our cabin

We spent Thanksgiving at our cabin on Lake Limerick with friends that we haven't seen since Matt first started his treatment in Seattle. We have missed the camping trips and fun things that we have done together. Hopefully 2009 will bring our 2 families back together again so we can enjoy all the adventures we do.