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, April 21, 2013

Happy Cancerversary!

Wow!  I am happy to say I went the entire day without even thinking about or remembering that two years ago today Ty was diagnosed!  I was noticing how pale and sickly looking he was at church this morning but that is to be expected cause he almost always looks like that on steroid week so even that didn't remind me that it was his cancerversary.
 I should look back at the two years and do a post about it but I don't even want to go there.  We have gone so long now without any complications that we are thinking and worrying less and less about possible complications and relapse.  Of course we do still think about things like that, and I am always ready for a possible stay at the hospital.  It is such a relief though that I don't want to bring up all of those old emotions by looking back at what he's been through.  Maybe I'll do a post about that soon.
We have also been through so much good, so many blessings, and had so much love and service from all of you that we don't want to focus too much on the bad.  We are so thankful that Ty's treatment has had good results so far and that his treatment has been tolerable and lets him still be a kid most of the time learning and playing and growing up.  We are hoping that we can help the kids with the other kinds of cancers get the research they need so that their treatments can be less tortuous and painful and miserable.  That's why we get involved in awesome organizations like the Tenley Foundation and CureSearch.  We hope to do our teeny tiny part ... we know Ty has such a great treatment plan because of a whole bunch of people from the past who did their teeny tiny part.  We are really really super duper endlessly indebtedly thankful for all of those people!

Saturday, April 20, 2013

Clinic Day and stuff

 Clinic day has become so routine that we have to add some other fun stuff...like Ty's favorite book right now.  It's No David!  He has it memorized and thinks he is super hilarious when he replaces 'David' with doodyhead.
 His sloppy joe sandwich mostly fell out on his plate...but he was actually eating it so I had to take a picture.  He doesn't like meat very often, especially spicy meat.  He weighed 18.0kg Friday (39.6lbs) at his appointment, which is down a hair.  I kind of expected that cause he didn't eat like crazy on his steroid pulse like he normally does.  Hopefully we can get lots of food down him on the steroid pulse that he started this Friday.  He always takes steroids for five days starting the day he gets vincristine.  They work together. They said he was 101.8 cm tall but I'm not convinced that's completely accurate so we'll see what it is next time and compare...I think it was 101 even last time.
 He has a cold and Thursday was threatening a fever.  He would hit 100's but then go back down.  The rule is if it stays in the 100's for more than an hour we have to call.  He was happy to see 100's because he likes going to the hospital.  Kudos to Portneuf Medical Center and Primary Children's!  I'm not sure if there are very many 5 year olds who like to go to the hospital.  We ended up not having to go.
 He also discovered Thursday that we have 2 of those thermometers and had a lot of fun measuring both ears at once. 
 Spitting in our sample cups for a study we are participating in.  They want our DNA so they can try to discover factors that indicate why people get cancer.  Maybe they will clone us too.
On our way to clinic.  Ty still holds my hair for comfort...something he picked up when he was a tiny baby.  I'm sure he would have grown out of that by now but since he still feels like junk frequently he still needs it.  I'm not in any hurry to make him grow out of it either.  I mentioned to a new mom once about a year ago that my four year old still holds my hair like a security blanket and she retorted, 'I hope my baby isn't still holding my hair when he's 4!'  We are always in such a hurry to make our babies grow up!  Ty has had to grow up too fast in a lot of ways so I have no problem with letting him be little in this little way.
 Probably one of the 'gifts' of cancer has been helping us see what matters most over and over again.  We don't sweat a lot of little things that used to seem important.
 Ty always likes shoulder rides at the hospital
 Getting his port site cleaned and ready for the 'magic sticker'
And taking a minute to play with the foot pedal sink before we left.  Our visit was quick, they took blood for a CBC and he got his vincristine and we talked to the doc for a few minutes.  His ANC shocked us a little bit, it is only 600. That's right on the border of neutropenic so we need to be a little careful about germs and stuff, we have kind of gotten out of the habit of being ultra careful now that he has done so well for so long....hence the cold I guess! They are keeping him on the same meds for now.  Hopefully that will be back up to around 1000 next month.  He's already on such low doses of his oral chemo I can't imagine them getting much lower.  The rest of his counts: WBC 2.0, RBC 3.87,  HGB 11.4, HCT 33.9, PLTS 189.  Everything is a little bit low except platelets, but not low enough to need transfusions or anything. 
Normal CBC ranges for him would be WBC 5.5-15.5, RBC 3.90-5.30, HCT 34-40, PLTS 150-400, ANC 1500-8500
Thanks for checking in!

Saturday, April 13, 2013

Mike and Penny Wars

Last night we got to see Mike! Remember Mike's Extra Mile? Last June Mike (a cancer survivor) ran across the state of Idaho (435 miles) in 10 days for the Tenley Foundation for our kids who fight cancer! The Idaho PTA asked him to be the speaker at their state PTA convention last night. That is the first time I heard the story of his run from his perspective.
He did such a good job, he had us in tears one minute and laughing the next. I wish now that I had recorded it. Every morning when he was running I would get out of bed knowing that Mike was already up running and I would wonder how in the world anybody could run 50 miles and get up the next day and run 50 more over and over again. He talked about how on one of the days he was so exhausted that he kept falling asleep while he was running...that that was the day that he had to dig deeper than any other time in his life and thinking about our little cancer fighters is what kept him going.  
 My friend Holly who's son fought cancer ran with him one of the days expecting to make it about 25 miles and she ended up running the whole 50 miles that day!  That was the day he was near Idaho Falls so we got to see them.  Mike choked up a few times while he spoke, one of them was talking about the kids running with him.  We loved being there for a few minutes, it was unforgettable.
Tenley, Ty, and Mike

The Idaho PTA also gave the Tenley Foundation a big check from the penny wars they held in local schools. When they had Tenley say a few words she simply said, "I couldn't be happier!" Channel 8 did a little story about her and Mike:

Tyson is doing great!!  We registered him for kindergarten and got our forms to exempt him from immunizations.  (He can't have them until he is off treatment because of his low immune system).  His last steroid pulse was kind of weird cause he didn't really have any steroidish cravings so hopefully he is still gaining a little bit of weight.  His food preferences are so bizarre, sometimes all he will eat is fruit and then on other days he tastes something and has to spit it out in the garbage.  He gagged on his biscuits and gravy this morning even though he loves them most of the time so he basically gets to eat what he wants when he wants.  Ice cream in the middle of the day? no problem!CHIPS right? (cancer has its privileges)  His next treatment is Friday so my next post will probably be that day.  We are so thankful that we don't have much to post about anymore!  Especially when all the news we have is good news! 
Thank you Mike!  
Thank you Idaho PTA and MaryKae Ryner for arranging Penny Wars! 
Thank you for checking on Ty!  
  Sign up for one of our CureSearch walks and come walk with us!  It's cheap and it will be fun! 
 SLC Oct 5   or   Boise Aug 17
(If you are coming to the walk don't do a donation, click REGISTER at the top of the page instead)