Week Twenty-nine

Waiting is hard. This was a week for waiting on tests to happen then waiting some more for the results. The week is over and we’re still waiting.

In short, nothing bad happened this week; nor did anything exceptional happen. It was a week in stasis more or less.

Robbie had a CT scan on Tuesday and by Thursday it was clear that there was no evidence of fungus growing anew. There may still be small pieces but the anitfungals, all three of them, seem to be doing their work.

Thursday, he had the bone marrow biopsy and by yesterday afternoon the preliminary report was actually positive. Some signs of life in the blood, which will help him overall. We’ll know the full report on Monday but he should be beginning chemo all over again this coming week.

The problem is that Robbie has not been feeling well. He has good portions of days and the occasional really good day but overall, he can’t seem to sustain those feelings. Some of it has to do with his body being transfusion dependent so needs red blood cells every now and then for a pick-me-up plus at least once, and often twice, daily platelets. He is laid low with waves of nausea which can spoil his mood for hours.

He’s on antibiotics and antifungals which drain him of potassium and magnesium which he needs to take as supplements. He gets the potassium to the max via the IV but needs to take pills to finish the job, which he’s struggled with. The other pills he takes just fine. Of course, all the extra fluids raise his blood pressure so he receives medication to force his body to eliminate the excess liquid which is no fun for him. It feels his job is to take pills and meds all day long.

He’s had a ton of visitors, friends, family, clergy; and it’s all been good for him. Kate arrived for a three day weekend yesterday and that helped perk him up despite getting really sick for a while there. When not with visitors, he’s walked around the floor, played some cards, actually read a magazine or two and made the most of his good time.

One cool thing: he’s painting a ceiling tile. Over the last few years, patients have had the opportunity to decorate one of the acoustic ceiling tiles for the floor. He’s coveted the chance but was told the program ended last fall for a number of reasons. He was surprised this week when Child Life slipped him a tile and some paint. After some thought, he began sketching then painting and of course, it’s pirate-themed.

It’s hard watching him uncomfortable and unhappy and all this before the chemo begins which will only make him feel worse. Now we have a better understanding of what Dr. Massaro meant when she said this second round was going to be harder. But he’s determined to do what is necessary while awaiting word on a bone marrow donor.

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