Tuesday, December 27, 2011

December 20, 21, 22, & 23, 2011 - Day 80 - 83

6 months, 2 weeks, 4 days since diagnosis

Last night, we had our first journey to Boston as an outpatient. I was nervous that we wouldn't be coming home but I didn't need to worry. Our visit today was perfect.

We stayed at the Ronald McDonald House last night and it was a lot like coming home. Jon and I were "alone" for the first time in what seems like forever. Riker was in good spirits and slept relatively well. We had a very nice quiet night.

What a blessing it is to be able to stay there overnight, too. Getting Riker packed and out of the house is like moving, each and every time. There are so many things to remember and I inevitably forget something every time. Seriously, we had a car full for only one night. Fighting Boston traffic after packing all morning in order to get to the clinic before 9am would not be nearly as much fun as walking over after a peaceful night.

At clinic, Riker's levels were finally perfect. More than perfect even. They had no explanation for why Riker had been throwing up and they did not seem worried. Our primary doctor actually said, "Unless she hands me a note written in Arabic that says she has GVHD, she does not have GVHD - That's how unlikely it is." Currently, they're blaming it on the bicitra.

Although Riker's potassium level had dropped significantly, they decided not to make any changes to the bicitra dosing because it had been so difficult to get under control. If it still looks as good next week, they'll look at making changes. They did, however, drop her magnesium dosage in half and her sodium by two thirds. We are going to start weaning the Ativan, which I had delayed on as to not make changes during the vomiting episodes.

These are all great changes. There are only two more weeks until we start to wean her off of her immunosuppressent. Our next clinic visit in Boston is on January 6th and we should develop a plan then!

For now, we have a lot to celebrate this Christmas. It's only a day away :)

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