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, October 11, 2013

Off Chemo, CureSearch Walk, Joy Jar!

 Clinic today, except not clinic because we decided to try doing his appointment in town instead of traveling to Primary Children's.  All he needed today was Vincristine and a CBC which they can do here.  We have always been worried about what insurance would do about that since everything was already approved for PCMC and also we have always enjoyed the trip down.  (With only one kid in the car it's kind of like a date!) Aaaand being at PCMC makes you feel better, like you are for sure keeping the Leukemia away.  We love his local doctor too though, so we decided to try out a local treatment.  It only took a couple of hours instead of all day which was fun!
Merin was also happy that his appointment was here.  So if all works out with insurance we will probably keep doing them here which means a trip to PCMC every 3 months instead of every month.  Tyson was thrilled of course, he doesn't care where we go as long as there are video games involved. (At home we only play video games on Saturday)
 One of his favorite activities (we're pretty sure it is not an approved activity so don't tell on us shhhhh) is playing with the bed controls.  Those beds go way way up!
 He also brought along his Joy Jar that he received in the mail this week!  It is a jar full of fun things that people fill and send to kids with cancer through the Jessie Rees Foundation...NEGU  Tyson says Thank you! to the very kind, thoughtful, awesome people who sent this to him!
Ty calls this hospital the helicopter doctor, the helicopter pad is right outside the peds floor windows.
At his last appointment his ANC was higher than they want it. (ANC is an indicator of his immune system's ability to fight infection)  They like to keep his immune system suppressed but not so much that he is in the danger zone for getting infections that his body can't fight off.  They upped his dose of oral 6mp a little bit, from 4 half pills a week to 5 half pills a week.  I was really curious to see what his ANC would be at this appointment and sure enough it is 500.  Right at the cutoff point of being in the danger zone.  They took him off of his oral chemo (6mp and MTX) for 2 weeks and then we will get a CBC to see if his counts are high enough to start back up again.  They didn't weigh him or check his height, so I guess we will find that stuff out in Dec at his PCMC appointment.  WBC 1.6, RBC 3.3, HGB 9.6, HCT 30.5, PLTS 182.  They wouldn't let me have a copy of his lab report this time which I thought was really weird...As the parent of the child being treated shouldn't I have access to all of what is going on with him?  It would be nice to have a chit-chat with the people who make hospital rules and pick their brain one of these days.
Last Saturday we traveled down to SLC for the CureSearch walk.  Thank you SO MUCH everybody who donated to the walk this year!  We had a smaller team at the walk, which was understandable since it was General Conference weekend, but our team made more money for CureSearch than last year!  So THANK YOU THANK YOU!!!!  I posted a whole bunch of pics on facebook from the walk so I'll just share a couple here.
 The cancer kids starting the walk.  There were lots of furry friends, characters, and mascots there, the kids had fun dancing and playing with them.
Our awesome team Tyson's Brave Battalion!!  Thank you SO MUCH for coming!  I hope it was a memorable meaningful event for you!  It certainly was for me. Thanks for checking in!  I'll update in two weeks after his CBC.

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