Friday, May 23, 2014

Day -6 The Start of Chemo: Treosulfan & Fludarabine with some Sandbox Therapy

Ryan and I are both pretty tired today (I think me more so than him).  Between getting up at 4AM yesterday, then getting to bed late last night, followed by getting woken up every so often after that for the nurse to check vitals, give meds, take blood for labs and weigh him, I feel like I have a hangover (without having anything to drink).  All the side effects without any of the fun! (Note: Ryan has to be weighed every morning between midnight and 4AM. It’s a crazy time to get a kid out of bed, but they need the data before the doctors do rounds in the morning.)

Ryan received two chemotherapy drugs today by IV, and so far he hasn’t had any adverse reactions.  They told me that he may start feeling sick in the next day or two, but that kids normally do fairly well the first few days.

What did surprise me today was that he needed a red blood transfusion. His hematocrit has been fairly stable (but still low) for the last three months (around 25-27), which was unusually high for him, and nobody had an explanation for it.  However, it dropped to 21 suddenly.  There is no explanation for the drop either, because he had not yet started chemo.

The highlight of the day for everyone (hospital staff included), is the indoor sandbox I made for Ryan.  It has kinetic sand in it, which is a type of sand that is mixed with polymers.  It feels a little bit like dry cookie dough and sticks to itself like moist sand.  It has been keeping Ryan busy most of the day and everyone that comes in the room is really intrigued by it.  In fact, his nurse put on clean gloves and played with him in it for a little while earlier.

The other thing that seems to have created a buzz among the staff is Ryan’s ability to easily take pills at his young age, along with my giant cache of flavored capsules that I brought in to assist him in taking any pills that might taste bitter (I put the pill inside a capsule).  The nurse told me that they even looked them up online this morning to check out pricing, etc.  I have now ordered them from “Capsule Depot” twice, with this last order consisting of several thousand, because we are sure to need them when Ryan is discharged and on many oral meds.  I keep wondering if I have now made it onto the DEA “Watch List.”

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