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

Tuesday, April 3, 2012

Back on Chemo

 The foot is doing great.  He started walking on it with the boot that night, and all the next day and by Saturday he was limping around without the boot.  He has a strange little rash around his mouth again, and the one around his eye hasn't completely gone away yet but they don't seem to be bothering him so I'm not too fussed about them.  He's been off Septra for 2 weeks now so I guess that isn't what caused the rash.  His lips are finally looking like normal!  They've been peeling nonstop for weeks.  He's still limping a little but he is also running and playing and being a kid.  It has been a fun week with bike rides, some fun playing with cousins...
the arcade/fun center...
And a mid-LDS General Conference picnic with grandma and Auntie complete with soda geysers.  General Conference was so so good, what a great way to spend the weekend!  Of course my most favorite favorite talk was by Ronald A Rasband.  You can watch that talk by clicking HERE.  I also loved THIS ONE.  and THIS ONE.  Don't worry! Each talk is only about 11 minutes long, and they are so so inspiring! 
I'm excited to listen to them over and over again over the next few months.
 After 6 weeks of no chemo he had a CBC to see if he can get back on it.  His ANC is 2.7!  That's 2700 which is in the normal range.  WBC 5.7, HCT 35.7, PLTS 294, HGB 12.2.  Everything looks great so he starts back on chemo tonight.  That's 1 6mp pill every day and then they cut his mtx (methotrexate) pills down to 6 every Thursday instead of 10 like he was taking.  I am surprised cause I figured they would cut the 6mp (mercaptopurine) pill in half too but they are keeping that the same.  My prediction is that in 3-4 weeks from now his ANC will be back down to zero which is not what we want it to do.  We want it to stay at about 1000 all of the time, which is lower than a normal ANC, but higher than what is considered dangerous for his immune system.  That way he can stay on his chemo which will give him the best chance of staying Leukemia free.  When his counts tank they will take him back off of the chemo until ANC is back up to 1000 again. 
We'll see, hopefully my prediction is wrong and this is the dosage that is just right for him and we can finally be sort of stable and make some plans...but I'm not betting on it based on his reaction to the 6mp during consolidation last june, and the exact same reaction to it in February.  I'm thinking somewhere in the April 24th through May 1st timeframe he will be back to neutropenic....So we are going to enjoy a normal ANC while we can! : )
Oh, and his TPMT enzyme test came back normal so he doesn't have the enzyme deficiency and should be able to process the 6mp normally.  That's good news and probably the main reason they aren't cutting his 6mp dosage.

6 comments:

  1. Good news! I loved your mid conference activity!

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  2. You are talking like a doctor now! :) I am watching the conference video's you posted. Love you guys. Will be keeping Tyson in our prayers!

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    1. : ) Lisa, I've been wondering if my posts are full of too much 'cancer jargon' it is so normal now that I don't even notice. Thanks for the prayers

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  3. I hope Tyson is doing well. I wondered the last few days how he's doing, being back on his "medicine" and all. Aidann's lips used to always be red and chapped and look raw on her lips and around them. She also would get rashes on her face and especially around her mouth. Then they would get worse and seem to travel around her face a bit. When I took preservatives, additives and food coloring out of our diet, it all stopped. I wonder if Tyson could be sensitive to something he's eating that could be causing his rash and lip issues? (I know, I know, your thinking - Duh! He's sensitive to his medicine!) Just thought I would share our experience in case it might be helpful. Good luck!
    <3 Katy

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    1. Thanks Katy! Rashes are like putting a puzzle together with lots of missing pieces, it could be so many things. The one on his face does look like hives and it is so weird that it was totally almost gone this morning and by afternoon had flared back up again. He has a totally different rash around his mouth. I will definitely keep an eye on what he is eating. He eats such bland food and not a big variety so that might be easy to pinpoint if I can get him to eat something else for a few days. : )

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