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

Friday, September 28, 2012

Cancer Buddies with Grandpa

 Happy to announce that Grandpa's surgery for prostate cancer went well, they think they got all the cancer and that it didn't spread.  Yay!!  Grandpa sent some pics of him getting his pokie to Ty and Ty said Grandpa needed two pokie prizes because he didn't even cry when he got his pokie.  I took him down the 'guy' aisle at the store that had tools and stuff, Ty took one look around and said, "Grandpa won't like any of this stuff!"  He promptly headed to the toys and picked out what Grandpa would really like.  Merin grabbed him some zip-ties from the 'guy' aisle.
 I had to add this pic cause it is so monumental that he is doing a job...granted it is a fun job, but getting him to do his jobs has been an uphill battle.  He got out of it for so long that it's hard to get out of that mode I guess.
We went up to the hospital for the teddy bear clinic.  See the real casts on the stuffed animals?  They had so many cute things there.  The kids got to get in the life-flight helicopter...We made a deal that that would be the ONLY time they would be in that thing.  It was fun for Ty to be there for his 'sick' tiger instead of cause he had to be there.
Tomorrow is the CureSearch walk!!  We have been looking forward to it ever since we couldn't attend last year cause Ty was inpatient at the time.  We are so excited!!  THANK YOU to those of you who donated and to those of you who are walking with us.  It means SO MUCH to us!!  We'll post pics of that asap. 

Tuesday, September 25, 2012

CureSearch Walk

We are so excited for the CureSearch walk this weekend!  Today a fellow cancer mom posted a question about why we (cancer moms) are so passionate about CureSearch.  She is discouraged about how much research costs and wonders how much our little contribution is really going to help the big picture.  I thought about her questions and wondered if other people wonder the same thing so I thought I would explain why we decided to get involved with CureSearch and do the walk in Salt Lake City this Saturday.
The SLC CureSearch walk is organized by a group of Utah moms of kids with cancer.  It is funded 100% by donations which means 100% of the money you donate to the walk will go to research of children's cancer.  CureSearch as a whole uses over 95% of their funds on Childhood Cancer research.  They fund the Children's Oncology Group who Tyson is currently doing a clinical trial for. 
I'm sure if you read this blog that you have heard me go on and on about the lack of funding and attention that childhood cancers get, they are so rare that researching new medicines for them is not profitable, and that is a problem for our little fighters. 
Personally my number one reason for participating in the walk is to honor the strength and courage of these young fighters, to walk with other families and friends who go through similar things, and to remember the fighters who have already left this world.
Number two reason of course is to help raise awareness of what these kids go through.
Number three reason to do our teeny tiny part in helping move the research forward.  40 years ago Tyson's chance of surviving Leukemia would have been 10%.   We are so thankful that there were researchers, doctors, kids and parents willing to work to find better treatment for kids even though the research takes years and years and the kids then didn't receive much benefit from the research at the time.  I hope the research they are doing now will improve the chances and the treatments for kids in the future and I am thankful I get to be a little part.
I am so thankful for the people who have joined our team, donated to our team, and are coming to walk with us.  It really means a lot to us that you are part of our battalion!!  Thank You!!  I don't want to put pressure on anybody who doesn't feel like you can or should donate or walk, that is totally understandable!!  If you read this blog and pray for Tyson you are still part of his battalion and we appreciate your care so much! The shirts for the walk should be here tomorrow, I'll post a pic of them when they come.  Let me know if you want one.
Oh! I guess I should also say that Tyson is doing AWESOME, loving preschool and tumbling, enjoying his new room and having a great time playing outside with neighbor friends.  He goes in next Tuesday for his next treatment and gets his new port that day.  Yikes!

Tuesday, September 4, 2012

First Day of Preschool & PCMC Today

 We are all amazed at how different Ty looks lately.  He is all grown up!!
He's so patient with my picture taking!
 Getting ready for his first day of Preschool!!
 And here we are!  He is in a small class taught in a home.  We thought that would be the perfect situation for him and so thankful we found the right place!
 We picked him up from preschool, picked out a pokie prize from the store and headed to PCMC.
 Whew! Dad got to come this time!!  Playing Lego Batman
 The IV ninjas used a new thing that numbs the area right before they put in the IV.  Ty said it didn't hurt so that was a bonus!  He got his pokie prize anyway, he knew exactly what he wanted this time cause his cousins had some when we were camping...we opened up his new lightning Mcqueen fishing pole after he held really still for his pokie...
 And he promptlly started 'fishing' for stuff in the hallway of the clinic.  I think he caught a couple of nurses.  The nurses even commented on how different and grown up he looks.
 Had to stop and fish in the lobby too
 It was a quick visit to the clinic but must have wore him out...or maybe it was the preschool then trip to PCMC combo.  They took some blood for counts, his oncologist checked him over, he got his poison injection and we left.  I'm sure Ty (and dad) wanted to play a little more Lego Batman...and mom wouldn't have minded chatting with some cancer buddy moms back in infusion...but getting some lunch and going home was more tempting.
Good News!!!  Weight: 16.9!!  (37lbs)  He gained 2 lbs this month and finally made it back to diagnosis weight.  He also measured at 97cm!  Yay!  His counts look great (a little too great since his chemo is supposed to keep his ANC down a bit).  HCT 34.2, WBC 3.7, PLTS 229, ANC 1.7 or 1700. A normal kid's ANC would be between 1500 and 8500 so since he has reached 'normal' they will probably up his chemo pills dose at the next appt if it is still in that range.  They want to keep it a little below 1500 to make it so the Leukemia doesn't come back.
Having a late TV night since there was a nap...Good Night!!  Still loving maintenance!  Next month he gets a port (central line) put back in.  They might also up his doses of chemo pills since his counts were up to normal this month, and he will be back on steroids...yucky.  We are praying that all of that goes smoothly.  Probably will be skipping preschool that week but that's okay, we are just glad he is well enough to go!  So Thankful!!

Saturday, September 1, 2012

Camping Trip!!

 At Tyson't August appointment his oncologist gave us the 'okay' to go camping!  We promptly planned a quick right before school starts trip

 We floated from Mack's Inn to CoffeePot and saw a couple of adult bald eagles and a couple of young bald eagles.  It was awesome!  The young ones let us float right by them.  We watched them fly around and call to each other. 

 We went for a little (2 hour) hike to the rapids.  Ty did pretty good, he had a few shoulder rides on dad and one scraped knees and hands episode, but happily hiked for a good portion of it.
Ty has so much energy!  He is eating better, talking nonstop, and discovering a lot of things about life like any other 4 year old.  He is much more socially inclined now that he feels better, he'll even talk to adults here and there! : )  His cousins came camping with us and it was so fun for him, he always had a buddy.
A few people have commented recently about how good, normal, and healthy he looks.  No more red peeling skin, his lips aren't peely either!  We have also noticed (now that he has a lot of hair) that it came back in a touch lighter than it was before and it has a curl to it now, especially when it is wet.  That is the opposite of his uncle who had blond curly hair, got cancer and after chemo it grew back darker and straight!
  Checking out a spider with his other 4yr old cousin. 
 He has his monthly trip to PCMC on Tuesday right after he goes to his first day of preschool!  He is so excited to start preschool!  He also went to his tumbling class and had a great time.  I didn't even hover over him with hand-sanitizer.  We are love-love-loving maintenance now!  We hope it stays this way!  Thanks for checking in!