Thursday, June 12, 2008

More from the "Don't see that everyday" file

Leave it to Mandy. She is nothing if not new and inventive. She does not believe in being like every other kid.
Today was Week 16 since treatment started. It was her 12th dose of one of her chemo medications, Carboplatin. Apparently, she decided today that 12 was her unlucky number.

Her counts were great, which surprised a number of people as she really Looked like they would be in the toilet. But, they were not, so chemo was ordered. She only had Carboplatin this week with no Vincristine(the other chemo drug). About 3/4 of the way throughthe Carboplatin she developed hives. And in true Mandy fashion, why just develop hives, when you can develop the worst case of hives seen by the Dr or three nurses. It took 40 mg of Benadryl followed by another 25 mg of Solumedrol to get them under control. Thank God, her airway was never compromised. But, it was quite scary. She was miserable. She literally had hives from the top of her head to the soles of her feet. She had hives in her ear canals, between her fingers and toes and covering her back to the point that it was just one big purple welt. It wasn't pretty. Poor baby. We obviously were not able to finish her chemo today.

So, thankfully, she will have two weeks off from meds now and when she goes back it will be with some added precautionary measures. The Carboplatin will be administered in the day hospital, with her vital signs taken every 15 minutes. She will also be premedicated with at least Benadryl and possibly Prednisone or Solumedrol as well. And just to keep the fun rolling, she still has the burn like wound, that they believe is caused from an allergy to the adhesive in the bandaid over her port. Yea, good times in the Willis room today. We were on the fence to stay overnight at the hospital for observation. We did come home though and she is to be on Benadryl every 6 hours until bedtime tomorrow night. She still has hives, but they are far less angry than before.

The bigger problem than just today is how to proceed if they can't get this allergy under control. There are options to desensitize her. There are not many available protocols for optic glioma though, so a complete switch of chemo drugs is unlikely. I just don't know yet. The Docs are all going to talk about it at the meeting on Tuesday and then go from there.

Mandy is asleep. I am exhausted, but will be up all night playing connect the dots on my daughter. We have some exciting weekend plans, so, really hoping she will be okay for them, for so many reasons.

That's just how we roll here...keep em guessing, keep em on their toes.

Thanks as always for checking on her. Love to all~

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