Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Sunday, July 8, 2012

Summer Fun!

I haven't updated the blog lately because life seems very uncancerish right now...we don't really have anything new to report except lots of fun summer activities!
Do I dare admit we went to the beach?  I put gloves on Tyson's hands and feet, we used about a thousand wipes keeping the sand off of the rest of him but I think despite my over-mothering he had a great time.
 Last summer he begged and begged to go ride in Grandpa's boat to no avail, we knew it just wasn't even possible.  Finally!  Not only did he get a boat ride...
We ventured a very slow tube ride too!
 Ty with his 'cancer buddy' Cooper.  The 4th of July we got together with our local cancer fighting cuties and threw candy in the parade to spread the word about the Tenley Foundation. 
Some of the moms of local cancer fighters...we love to hate cancer together.
I forgot to make posters about the Tenley Foundation so the people on our side didn't know what our float was for but that was okay, we had fun being patriotic anyway. 
 As I sat in the back of the truck that night watching the fireworks I looked around at our kids and thought how simple and normal that we were all sitting there together, it might even seem a bit mundane.  Then it occurred to me what a miracle it was that we were all sitting there together.  One year ago Brady was celebrating the 4th in Iraq... I was in the hospital with Tyson who had a knee infection and no immune system and I was on the phone with my 8 year old Ryan who was watching the fireworks and crying that I wasn't there with them.  I watched my kids as much as I watched the fireworks this year, they snuggled in their blankies and didn't seem to have a care in the world, maybe mundane isn't quite the right word, they were content, maybe not even realizing it or thinking about how things were last year, they were just content and happy.  I remember thinking last year, if Brady makes it home alive and we all get to be together again I will be the happiest person in the world!  I am so quick to forget how things were and take for granted how great things are now.  It was great to sit back and think about all of that and realize how blessed I am to live where we live and have what I have.  Sometimes I feel guilty that we are so blessed.
Tank wars!!!  We had a very fun very hot! family reunion yesterday. (You can see Ty standing on Brady's shoes cause the pavement is too hot)
Ty threw up on the way to the reunion, so I dropped everyone off and spent a while cleaning it up out of the car...did you know it's hard to get puke smell out?  Any suggestions?  He had a great day though making cotton candy and slushies, fighting like a pirate, playing in the water, and having hot dogs without the hot dog.  (he just likes the bun with ketchup) 
Last summer we missed most get togethers and reunions so it has been so much fun this year to have a 'normal' summer.  I find myself worrying about fevers, germs, and hospital stays less, I even unpacked the clothes from the hospital 'to go' bag, though the hospital activity bag and toiletries still ride in the van with us wherever we go.  I have everything we will need next time he ends up staying in the hospital in that bag (including Lucky Charms and his very awesome 'I Spy' blanket)  so that means that now that I am totally prepared we won't end up having to go right?  So far so good, the last two times he has fevered he has had a high enough ANC to be able to go home and it has been over 3 weeks since he fevered!  It is strange to be normal, its almost like we are holding our breath waiting for the next bad thing to happen but the longer we go with nothing bad happening the less we 'hold our breath'. 
We go to his monthly Primary Children's appointment on Tuesday.  He won't be getting a CT scan of his lungs that we know of, so I think that means he will be on his voriconazole (antifungal) at least until his August appointment.  Darn fungus is hard to get rid of!  We got the statements back from insurance for what they paid (we get some kind of medical statement in the mail, usually multiple ones almost every day) for the voriconazole...guess how much that stuff is...about $900 a bottle!!  One bottle lasts Tyson about 6 days because he is taking 240 milligrams twice a day, we just have a copay because our insurance is awesome and our case manager who deals with treatments associated with clinical trials has been very good...we are very very very very very very thankful for good insurance!
Anyway..his appointment should be a normal one with an IV (yes pokie prize is ready), a methotrexate back poke (he gets sedated for that), vincristine, and a CBC.  I'm curious as to what his blood counts are and what that will mean in regards to his chemo pills dosage. We will find out Tuesday!  I'm guessing they will be holding off on the steroids again since fungus likes steroids.  We will also be finding out that day if it will be safe to head to another family reunion.  We have made plans so that it will work out either way, hoping to go, but if some of us need to stay home to keep Tyson safe we are okay with that too.  We'll see how things go.
Whew! Thanks for reading! That was a long one!
Praying for Timmie, Boo, Lillie, Millie, Tenley, and so many others.  We are so thankful there are great doctors and nurses and researchers out there trying to help these kids!

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