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

Saturday, July 27, 2013

Clinic, Crazy Fun July

 Super Ty!!  We have had a super busy July!
 (Ty with his favorite story...he has lots of stuffed animal friends on his bed...each one with its own unique story)  I haven't had a chance to update and I have to admit in my last update about the doctor appointment I didn't divulge all of the details about that appointment at the doctor's office to see what was going on with his mouth sores.  We didn't want to be overly dramatic or sound paranoid so we kept the part to ourselves that the lab technician found an abnormal white cell that neither she or the doctor could identify.  It had him concerned and he said if you weren't going to clinic on Friday I would probably send you down there earlier. 
 So needless to say I spent the week preparing to stay at Primary children's just in case that 'abnormal white cell' turned out to be something sinister...after all a Leukemia cell is called a blast and is just that, an abnormal immature white cell. 
 Of course part of that preparation was taking lots of pictures of his current cuteness so you get to see some of them...including my favorite...
Soooo to avoid keeping you in suspense any longer his oncologist was sure it was nothing and sure enough they found nothing abnormal in his CBC.  His pediatrician from home called me on my way home from Utah to get an update.  I appreciate his concern so much.  The only thing weird on his CBC was that the immature granulocytes were a tad high.  I wonder if that is what they saw in the original CBC and just didn't know what it was.  Who knows.
 Getting spoiled at clinic while he waits for his chemo.  Thanks to countless people and organizations, Tyson thinks having cancer is fun.  I'm glad that is what his memories will be of this whole thing.
Had to get his cookie while we waited for meds at the pharmacy.  His visit was normal and quick and everything looked good.  He grew a little taller but didn't gain weight...probably because of that little stomach flu he had so no worries.  He told me when we got in the car that he was going to stay awake the whole trip home this time...about 10 minutes later he was sound asleep.  for my records:  WBC 3.2 (low but normal for Ty), HGB 11.3 (just a hair low), HCT 34.1 (normal), RBC 3.95 (normal), PLTS 283 (normal), ANC 1200 (low but great for him so his at home chemo pill dosages stay the same) Immature Granulocytes 0.6 (high) 
 Monday after clinic we went to Lagoon through Make-A-Wish and Give Kids the World.  Have I ever mentioned that Ty LOVES roller coasters?  He was sad that he was too short to go on the really big ones but had so much fun anyway.  This pic is of the ride Bombora which is fun.
 Lagoon has so many rides!! and we were there on a Monday so it wasn't crowded, we had a great time!  Thank you Lagoon!!!
 In July we also played with lots of cousins...
 Went to Cherry Hill through Give Kids the World/Make a Wish also (Thank you Cherry Hill!!) ...
Had tank wars with fireworks...
Went swimming at Lava,
 Went camping...
Ziplining!!!  This is Ty and his daddy having so much fun!...
 Thanks Uncle Bud for the awesome closeup!...
Floating the river at Lava...
And we did another yard sale for our CureSearch walk in October. 
Thank you so much to the people who donated stuff!  We are so excited to help cancer kids of the future in our own teeny tiny way. 
Thanks for checking in with us!  We are so relieved and grateful that he is doing so well!!

Sunday, July 7, 2013

More Camp Hobe, tummy flu, mouth thingy

Ty and Merin had so much fun at Camp Hobe! 
 At the end of the day they sing campfire songs to us that they learned.  They are singing Bubblegum in this one.
Ty was on steroids but had a good time anyway.  He ate 14 chicken nuggets after I picked him up from day camp Monday, and then asked for more as soon as I picked him up the second day.  In the pic with him is Avery who was diagnosed the same day as Tyson with A.L.L. We met in the hospital that first week and have kept in touch ever since.  Girls have a shorter treatment than boys so she is almost done!  We are excited for her! 
 Friday we went back and picked up Brenna from Teen camp.  She had a blast of course!  Have I mentioned before that we love Camp Hobe?  We are so thankful for them!
We went to Kaysville for the 4th so Dad and Brooke could run in the 5k with her cousins.  They did a great job and the parade was so much fun!
 Ty's uncle fills the back of his truck with a swimming pool full of water for the parade and the waterfight afterward.  Everybody took turns dipping their feet in the pool to stay cool.
 And Ty had a blast taking out the guy on the tanker full of water that was spraying everybody! 
Ty threw up first thing Friday morning, and his sister threw up in the night that night.  We figured out later that they got a stomach bug from playing with cousins earlier in the week.  No fever though and we managed to keep him hydrated so we didn't have to take him in.  He threw up the next morning as well and then this morning (Sunday) he woke up with a sore mouth.  Basically his whole mouth hurts and he can't eat much of anything.  He's been eating frozen V8 fusion slushies all day.  I am hoping someone has seen this before so they can tell me what it is and we won't have to go to the ER. 
 This is what it looked like this morning...the back/roof of his mouth had little cracks in it and looks angry in general. His taste buds are swollen.  his tongue isn't really that white, I think that is from the flash.  But his taste buds really are that red...
 A few hours later the cracks sort of grew bigger
 And bigger like the skin is sloughing off or something
And that's what it looks like now...like big chunks of skin are gone.  Soooo not sure what to do.  It doesn't really look like thrush but I guess it could be.  Doesn't thrush seem more spiderwebby and patchy usually?  If it is thrush and he happens to be neutropenic is there a chance that it could become systemic?  Cause he's been there done that and it is not fun.  So here lies my dilemma.  Wait till tomorrow and take him to the children's clinic or take him to the ER tonight.  He doesn't have a fever or anything, and other than not being able to eat feels fine.  I am wondering if it is just a continuation of the virus that caused  his stomach flu.  Also wondering why this kind of thing always happens on the weekend making the ER our only option.  His ANC was 800 at his appt 3 weeks ago...so not incredibly low but he has been known to have a sporadic ANC.  Bleh.  If it was any of my other kids I wouldn't even take them to the doc.  Has anybody seen this before?
UPDATE: Took him to his pediatrician today and he said for a normal kid he would just say its a virus and will go away, but with Tyson whenever you see mouth sores like that you want to make sure he's not neutropenic so he did a CBC and his counts are good, everything including his ANC is in the normal range so no worries for now.  Thanks so much for all of your suggestions and concern, I was glad we didn't have to go to the ER.  His CBC for my records: WBC 4.2 (normal), RBC 4.48 (normal), HGB 12.8 (normal), HCT 40.8 (normal), PLTS 305 (normal), They weren't done with the ANC when I left but said it was at least 1600 so no worries.