Alyson’s Journey

Today marks the third week for Alyson and me living at the hospital. Due to renovations, we had to move rooms earlier this week. We’re now in 714.

Alyson had another CT scan on her chest and abdomen. Once again, it turned up nothing. (Which is a good thing.) No fluid in the lungs nor obstructions in the intestines. She’s still running fevers off and on which require blood cultures virtually on a daily basis. Thankfully, they’ve all been negative aside from the very first one when we arrived at the ER.

In the positive column, she’s drinking water again. About 8-10 oz/day are now going in.

Friday, in order to help see what’s going on, she had a bone aspirate and biopsy. The aspirate came back with no indication that she’s relapsed. No leukemic cells present. Actually, not many cells at all. There’s just nothing going on in there. The aspirate was sent for chromosomal testing as a just-in-case. That testing can detect relapse in its infancy. The biopsy requires a few days to de-calcify the bone in order to see what’s inside. Due to the weekend, we should hear the results tomorrow. While she was under, we asked that her butterfly be replaced (which happens weekly and doesn’t include time for Emla) and that her mouth get a good once over. Her cheeks are reddish, her rear bottom gums are inflamed and,

“Her tongue looks like it’s been through a meat grinder.”

It’s completely covered with ulcers.

Today, Sunday, she had an echocardiogram. We didn’t know one was scheduled until about five minutes before the tech showed up at the room. It was quite comforting to Alyson not to have to leave the bed. We were about to start when John, Bradyn and Geri showed up. Bradyn got to see the valves & chambers of Alyson’s heart. She was also given two printouts. For obvious reasons, I can’t scan them in from here. The test will be reviewed tomorrow and we should be given those results tomorrow early evening. They’re looking for an infection via a thickening of the walls of the heart.

On the drug front, Acyclovir was removed from the queue. Her labs had been negative for herpes and, in my not so humble opinion, the drug had no further usefulness. On Wednesday, I had her taken off the morphine pump and we went to an as-needed basis. Unfortunately, I wasn’t that great at seeing when she was actually in pain. She doesn’t really complain until it’s completely unbareable. I got better at reading her on Friday/Saturday and today was able to help better manage her pain. She even struggled out a few words without breaking into tears afterwards.

So, we wait now for tomorrow’s test results. I’ll let everyone know what, if anything, was discovered.

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In order to keep myself busy, I’ve been crafting up a storm. I made Alyson a new hat with leaf applique, a needle felted kitten, a felt pinecone and worked on a few more been-sitting-around-way-to-long projects. I’ve also been reading up a storm on my new Kindle. Any book suggestions for a fantasy/time travel/magic lover?

Tina, who is now nicknamed The Party Saver, has taken over the planning of Bradyn’s birthday party. It’s going to be Heroscape themed and has all sorts of surprises in store. He’s been given the option of having it at home or here at the hospital; assuming we’re still here with Alyson. I gave him the options yesterday but he told us he hadn’t decided one way or the other yet.

And finally, on a funny note: John wanted to see if Bradyn would enjoy Guitar Hero as a gift. There is a set here in the playroom, so I suggested that a trial run would be of benefit. Bradyn was unimpressed. John picked it up and got boo’d off the stage. I completed two songs with a “You Rock!” rating before being called back to the room. See there? Music lessons are good for something. ROFL!