Alyssa is a little over one week from discharge and, for the most part, things are going well. Jared was able to make it to Cincinnati on Friday afternoon which was a long time coming for Alyssa. She probably tried to do a little bit too much while he was here and was paying the price by Sunday afternoon when he left. She’s literally been sleeping 18 hours or more each day...to the point where I’m having trouble waking her to even take her medicine. No fever, and doesn’t really feel bad, just says she can hardly keep her eyes open. Bloodwork/labs all look good. She continues to do well without needing platelets or transfusions, which is pretty miraculous. She did have an allergic reaction to one of her new meds...horrible itchy rash all over her arms and hands. They think they know which one it was and will swap out with a replacement. She’s had several clinic visits so far, but after this week, she is just scheduled for Fridays. She has PT evaluation today at 5pm and they will come up with her outpatient therapy plan. Should be interesting, given her current lack of energy. At this point, I’m just hoping she doesn’t sleep through her appointment.
An update on our Airbnb...as you know, I was having a heck of a time trying to find accommodations for us for after her transplant. She was too old for Ronald McDonald House and Hope Lodge closed in the Fall. I was fully prepared to just suck it up and pay for the AirBnB (really, what choice did we have?) The social worker at CCHMC gave us a few leads on organizations that might be able to help. Enter The Bone Marrow Foundation. Believe me when I say, timing is everything. This non-profit just started a new program/partnership with AirBnB to help families that are facing housing issues during a medical emergency. We are one of the first families accepted and they picked up the full tab for our AirBnB, which was a pretty substantial amount. This was a huge help as the new year brought not only a 50% increase in the insurance premiums, we also started all over again with deductibles and out of pocket expenses. So, this really came at a good time. And once again, something good has come out of this god awful experience. They liked Alyssa’s story and asked if we would be willing to be interviewed (assuming to promote the program) The interview was set up for yesterday...and Alyssa wakes up with that above mentioned horrible rash that’s gotten worse and she now has a swollen face, nose, etc. They wanted to see her immediately at the hospital. Three hours later, and Alyssa is in no shape whatsoever to be interviewed, so I agreed, very begrudgingly, to sit for the interview by myself. I honestly don’t know how Eric gets out of these things...he was her BM donor and I personally thought that was a much more interesting story. And this was no “sit down and talk into a recorder” interview. There was a crew of 4 and they had set up cameras like I was going to be doing the R.Kelly interview live. Anyway, it turned out fine...no one I know will ever see it, so that’s the good part. Plus the lady from the Foundation and I hit it off immediately and I promised her I would give The Bone Marrow Foundation a shout-out on this site.
I continue to hope and pray that Alyssa’s strength will start to improve. Her body has just been through so much in the last 6 months. I really don’t know how someone that wasn’t in her good physical shape prior to a transplant, would be doing right now. Just taking it a day at a time. Hoping also that this warmer weather will inspire her to get out and at least take short walks. I’m bring her “baby” Hope back to Cincinnati with me on Friday for a short visit. I know just seeing her dog will cheer her up.