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 28, 2011

Delayed Intensification Update

St. Baldricks St. Baldricks St. Baldricks St. Baldricks...wondering what that is??  Click on the link at the bottom of this post for more info...Can you believe people shave their heads for Childhood Cancer?
Look!! Celery!!  I feel like a super hero when he eats a veggie.  He's neutropenic right now so we are just trying to be super careful about germs and stuff and crossing our fingers that he doesn't get a fever. We'll take it as it comes though, maybe if we don't make any plans we won't end up in the hospital right?  he he he...if only

Ummm not sure if this is the safest place in the world to have a nap.  Ty's blood counts are pretty low right now which can make him tired...but really he's doing pretty good considering the phase he's in.  Tuesday's CBC~ WBC 0.4, ANC 200, HCT 26, PLTS 155.  Now on Friday they are a little lower at WBC 0.4, ANC 100, HCT 22.4, PLTS 64.  Pretty much no immune system and he's right on the border for needing a blood transfusion so we'll test him again on Monday and probably head up to the hospital for a few hours for some blood depending on the counts.  That's a fitting activity for Halloween isn't it?  I guess he could dress up as a vampire...nope he's gonna be mater, I know we should take advantage of his baldness and do something funny but he's three and has a mind of his own...and I am super ok with that.
His port is accessed right now cause he gets IV chemo four days a week.  Last week there was a little problem with insurance allowing chemo to be done at home so we had to go to the hospital four times.  We got hold of the clinical trial specialist at Tricare though so this week we got to do it at home. We are so glad we signed him up for a clinical trial!  Because of that everything goes through the clinical trial people and they make exceptions that the normal insurance wouldn't make. YAY!  We are so grateful for great insurance. 
He can't have a normal bath when he's accessed so I use those special bathing cloths from the hospital...he hates it. He hid behind the couch so I just brought the bath to him.

He feels pretty good, much better than he did during the first half of delayed intensification. See the cute chappy lips?  I wonder if that is a normal sign of low platelets or if he is just special...he always gets chappy lips when his platelets are low.

You wouldn't know that he is operating on super low red blood cells if you saw him playing outside today.  He doesn't play as long as normal of course, but it sure isn't slowing him down as much as you would expect.

Done today with the IV chemo Cytarabine and will be done Tuesday with the oral chemo thioguanine.  Now we wait a couple of weeks for him to recover and then we start Interim Maintenance II which is a visit to PCMC for chemo every 10 days.  That lasts for two months and then he starts maintenance which I think is oral chemo every day but we only go down to Primary Children's once per month.  I think that will last about 30 months, not sure exactly yet. 

 I have some relatives in Logan, Utah who were inspired by Tyson to hold a really exciting event to raise awareness and funds for Childhood Cancer.  They are absolutely INCREDIBLE!!  Several of them are shaving their heads (yes, some females included) to raise funds for a super fun fundraising group called St. Baldricks.  Ty has a page set up on their website that you can access here.   And the St. Baldricks event that they are holding is at Rocky Mountain Dermatology in Logan, Utah on November 9, 2011 at 5:00 pm.  Address: 550 E 1400 N Ste Q  If you are interested you can click HERE for more information and to donate.  Every little bit helps so if you can even do $5.00 that would be AWESOME!!!  I am ETERNALLY GRATEFUL for organizations like this, without them Tyson's chances of survival would be 10% instead of 95%!!  I can't say thank you enough to the great people who put things like this together. 
THANK YOU Utah Cousins!!! 
And Thank You St. Baldricks for helping more bald warriors survive!!

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