tom's blog

Home, and busy week ahead

Anna came home from the hospital today and spent most of the evening in bed. When she's over at the hospital, they are great at dealing with her pain, but it's difficult to get solid sleep. They are constantly in her room to check temp, blood pressure, etc and there is always just a lot of commotion. She's pretty good at closing her door and closing out some of the chaos, but there's always something going on. Her body has been pretty sore for the last couple of days - more so than normal, so we're not sure what that's about yet. She definitely had more energy/strength, as she was able to walk herself out and stayed up for a while when she first got home.
TJ was definitely happy to see her again and we'll definitely enjoy the time that she is home. This week seemed extra difficult with TJ and the questions. It always seems to start in the evening when we're coming up on bedtime, as he misses his mom. He's been asking a lot about "where is mommy", and my response is generally "she'sgetting medicine so she can get better." It used to be the conversation would end there, but lately he's been asking when she's going to come home and most of the week, it was "couple more days buddy", after which the tears would start as he'd say "that's too long" and that he wanted her to come home now. We had a few rough nights. Sometimes I'd comfort him, other times I'd join.
We're starting to get more info on the transplant procedure. We go to Hackensack on Monday for a class for caregivers and patients. After that, we meet with a few specialists. We're back over there again on Tuesday for a meeting with the primary doctor who will perform the procedure. At present, it looks like she'll be admitted around April 11th, then she begins a week of real heavy duty chemo/radiology/etc. The actual procedure is tentatively scheduled for right around April 19th. We should get more info this week, and it's still a bit fluid as it requires coordination with the doctors and with the donor.

Woo Hoo!

First the routine stuff... Anna came back to the hospital on Tuesday for the start of the next chemo round. Her god sister, Lele, is in town so she has been staying with Anna over at the hospital. Treatment is proceeding forward with no complications. The Doctor who performed the sinus surgery stopped by to check her out and confirmed everything looks good.
In a strange bit of timing, around 10am today, I decided to call the Nurse who was handling the Bone Marrow Donor search process. It had been a couple weeks since we spoke, so I wanted to check in with her. Unbeknownst to me, at the same time Anna received a call from the nurse who actually coordinate the Bone Marrow Transfer Procedure. So, at the same time we were independently getting the same update from two different people. They have located someone who is a suitable donor. The person is not a perfect match, but is a 9 out of 10 match... which is definitely in the acceptable range to proceed with the procedure. From what we understand, the potential donor is a 32 year old male in good health. He's apparently been contacted already and submitted to additional blood testing, so we know he's alive and from what we can tell is continuing to participate and proceed with everything. Our next step is to go over and meet with the Doctor who will perform the transfer procedure. With Anna in the hospital (this guy works out of a different hospital), it probably won't be until sometime around Wednesday of next week until we meet with him. In theory, when we meet with him we'll start talking about actual dates to perform the procedure and obtain more information. As I was hanging up with the one nurse, Anna was calling me to let me know the news. Very odd the way the timing worked out.
There are obviously a lot of moving parts here, but this is fantastic news and we'll hopefully be moving forward very quickly at this point. The nurses we spoke with today, thought that it'd probably be about four weeks from now before the procedure actually begins, but we'll know more in another week.
Today was a good day. Lots of emotions all around. It felt like we were kind of just in stuck in limbo for a while, and today was the first day that we really moved forward.
For everyone who did register to be a donor, thank you for doing that. Hopefully, we've found our donor at this point, but there are many more out there who need help. We're going to continue to promote the marrow donor process and helping to get more people registered. Anna wanted to personally thank everyone who has registered, everyone who follows the blog, everyone who supports us, and thank God.

Round 2 coming up

Anna's been home for almost a week at this point. It's been great to have her around. It was a pretty quiet week with no Oncology appointments, and only a try to the specialist who performed the sinus surgery. Her sinuses are continuing to do better, but she still has a bit of stuffiness. She goes back in on Tuesday for the 2nd round of this chemo regimen. Basically starting again with the 26 hour straight chemo delivered via port, and then a few more days of some pretty heavy stuff. Anna's god-sister is in town, so she'll help out with driving Anna and taking over food, etc.
My friend Ray was in town for a few days, and I was able to hang out with him on Saturday. It was the first time in a few months that i got to spend time with him, and the first time in ages that I went out for a few drinks. With everything going on, my time is pretty tight these days, but I'll have to find some time to get out once in a while. It felt nice just to be able to have a few laughs and relax for a bit.
I'll post a few times this week when she's back in the hospital. Thanks for continuing to check in.