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 25, 2013

CBC, Giant Microbes White Blood Cell, back on chemo

 Ty received an extra special present from his Aunt Erin tonight, a stuffed white blood cell!  Ah the irony!  This little guy should be wearing a crown because he rules Ty's life!  He's a cute little white blood cell though, isn't he?
ANC stands for Absolute Neutrophil Count...see if you can find that word in this awesome explanation of white blood cells... 
So today Ty went in for a CBC at the Pocatello Children's Clinic.  He was so excited because that means a finger poke which means he gets to pick out a pokie prize!  Yay! 
Unfortunately, even though we were there at 10:00am we never heard back from the PCMC clinic so we don't know if he is supposed to be back on chemo tonight or not.  He's been off his oral chemo pills for two weeks now because his ANC was getting too low.  Today he was supposed to go back on them if his ANC was back up. Sigh.  I guess we wait now until Monday or Tuesday, whenever they decide to call us.  I wish I would have remembered to call and badger them a little this afternoon.  I'll just update this page when I hear from them.  Here's to hoping he gets to go back on soon!...
Update: Back on chemo but back to his old dose of 1/2 6mp 4 times a week and 1 MTX.  Counts: WBC 2.9, HCT 38, Platelets 300-something, can't remember exactly, ANC 1000.  We were surprised that was only 1000 after being off for two weeks, I guess it took him a while to recover.  He had a blast on Halloween, dressed up as the blue power ranger, had a costume parade and party at school, went trunk or treating at the park, visited some cousins, trick or treating in his Grandma's neighborhood, had yummy soup at Grandma's, and trick or treated at his other Grandma's.

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.