I cannot begin to describe how happy it makes me to write these words. Alyssa spent 108 days in Cincinnati, 56 days of that in the hospital. What a journey.
Our last day was spent repeating a lot of the tests they first did before her admission...pulmonary function tests, 6 min walk test, Echocardiogram, etc. The EBV count that they were alarmed about just a week ago, seemed to respond to the IV medication with flying colors. To recap, her virus count went from 90,000 to over 500,000 in less than a week. “Alarmingly high” I believe was the word they used...(basically we are panicked but we can’t really say that without freaking you out) She was given the Rituximab last Friday and her lab count came back on Thursday...virus level was around 3,000. In my layman’s mind I’m thinking, that’s good, right? Well, come to find out that Dr. Nelson would’ve been happy if the number dropped to the 100,000s. So a 3,000 count was pretty impressive. Alyssa’s little pep talk really worked!! They gave her one more dose on Friday to see if they could get it down to zero. Labs will be drawn here in Louisville on Tuesday, so we shall see. I’m pretty confident we will not be making any trips to Cincinnati for a Rituximab infusion. Her bone marrow biopsy also came back ALL CLEAR! She will get her next biopsy...never. He said unless there is a very strong suspicion that something concerning is going on, she will not get another biopsy. I have mixed feelings on this one. It’s the only “proof” if there is ever a relapse. But of course, she would have other symptoms that would raise suspicions. I don’t know, it’s like a double edge sword. I like the thought of having this test proving she doesn’t have cancer. But then having the test done on a scheduled basis and waiting for results every 3-6 months sounds pretty anxiety provoking too. Alyssa also came off 3 medicines yesterday, she’ll come off 2 more once her steroid finishes up on June 13th. So when it’s all said in done, she will only be on 3 medications...her anti-fungal, anti-viral, and her antibiotic. I’m assuming she will stay on these for 6 months or more, until her immune system starts doing it’s job. She will also receive an infusion drug, IVIG, probably every 6-8 weeks as well to help boost her immune system. Other than that, she was sent on her way. The 2 biggies are to avoid being in crowds (and if unavoidable, she must wear a mask) and stay out of the sun. Even a mild sunburn can trigger her GVHD.
We packed up our little house in record time, although it was impressive the amount of stuff we had carted up there from home over a 12 week period. Hope sat in the backseat and we headed down I-71.
I will be posting less frequently now. Always assume no news is good news. Alyssa is ready to start her life again. She won’t be able to work a “regular job” for awhile because of the precautions she has to take. Her plan is to move back to Bowling Green in late July or August, start working out with her wonderful trainer, and maybe house or pet sit to earn a little money. Alyssa and I have been together almost 24/7 for over 9 months now, and believe me, we have had our moments. Her moving out of the house will be bittersweet in the best way possible.
Thank you everyone for your support throughout this journey. We could never thank you enough for all the prayers, cards, texts, phone calls, gift cards, etc that you all have sent our way. I know I’ve said this before, but I do think that people are inherently good and even though I wouldn’t wish cancer on my worst enemy, I know there was a reason for all this. Alyssa is going to go on to bigger and better things and it’s going to be fun to sit back and watch.