It’s been awhile, so this may be a long post.
We spent the day at CCMHC yesterday for routine follow up. After her last steroid wean, in mid-November, Alyssa started breaking out in this dry, itchy red rash. Started on backs of knees, then arms, trunk, legs etc. it ranged from looking like just dry skin to these small raised red bumps. I was very concerned that her (skin) GVHD had relapsed. We called the Dr, sent pictures, and he prescribed a steroid cream for now. Rash continued for next 3 weeks, some days better than others. By the time we got up to Cincinnati yesterday, it actually looked 100% better. Dr. Nelson does not think it’s GVHD at all, probably something viral. In addition to it being winter, and being indoors with heat on, her skin was also getting very dried out. He recommended continuing the steroid cream (sparingly) and just being diligent about super moisturizing every day. So that mini-freak out about GVHD was for nothing. She did have appointment with an ophthalmologist. She’s been complaining for a few months about dry eyes, blurred vision, etc. She’s been on steroids now for almost 10 months and they can cause all kinds of problems with the eyes, mainly cataracts. Found out you can also get GVHD in your eyes, and she’s certainly had her issues with that. But everything checked out fine, eyes looked healthy, and she’s just got dry eyes, probably from medications. Nothing that artificial tears can’t fix, so that was good. So bottom line, Alyssa is basically like a dried out prune right now.
Yesterday was also a BIG day...she FINALLY got her port out!! In the cancer world, this is a big thing. It kind of signifies the official end of chemo and longs days attached to an IV pole. While Alyssa hasn’t had chemo in almost a year, she’s definitely has had her setbacks that required many, many infusions. The only drug that we foresee her needing for the immediate future is IVIG infusions. She will continue with these every 5-6 weeks for about another 6 months or more. (Back in June when she tested positive for the Epstein Barr virus, they had to give her a drug called Rituxamab. It treated her virus, but it also wiped out her ability to produce B cells for at least a year or more. B cells are an important part of your immune system. So until her body can start making them again, she will get the IVIG infusions). Luckily these can be done in Louisville, so not too much of an inconvenience.
So, as of now, Alyssa does not need to go back until February, 2 whole months from now! That will put her right at the 1 year anniversary of her BMT, a pretty significant milestone. There will be a battery of tests/procedures done then...Echocardiogram, PFTs, Dexa scan, etc. The one test he will not be doing is a bone marrow biopsy. That’s the biggie, the one where they check under a microscope if any of those god awful cancer cells are floating around in your spinal fluid. Because she had to have one done in July (when her labs looked terrible and he thought there was a chance she might have relapsed...the second, single worst day of my life) He just doesn’t think it’s necessary. His logic is, it’s only been 6 months since last one, labs are all looking great, she feels good, so there’s just not a need to do it. Plus it’s highly invasive. I’m going to attach a link at the bottom so you can see what this procedure actually looks like. And Alyssa has probably had 5-6 ? of them at this point. I am perfectly fine with this plan. I cannot even begin to describe the agony of that 24 hours you have to wait to get preliminary results. It’s honestly like time stands still and every horrible thought you’ve had about your child and cancer races through your mind non-stop. So, yea, I’m good with skipping it. Alyssa, on the other hand, was not so easily convinced. She’s like “I want proof I don’t have cancer”. He explained again his rationale, and convinced her that there would most DEFINITELY be other symptoms indicating a relapse. So, for now, no biopsy and that’s a good thing.
Last weekend, Eric, Taylor, Alyssa and I went to New York City. We were guests of the Bone Marrow & Cancer Foundation. This was the organization that paid for our Airbnb in Cincinnati. In return, Alyssa helped sponsor several fund raisers for them that raised over $15,000. It was awesome to be able to pay it forward. We stayed right in Manhattan and I’m telling you, Christmas in NYC is like no other. It was amazing to see all the decorated stores along 5th Avenue, the big Christmas tree and ice skating rink at Rockefeller plaza and the highlight was the dinner and Rockettes Christmas show at Radio City Music Hall. No way could anyone sit through that and NOT be in the Christmas spirit. It was a great 3 days and we walked over 24 miles while we were there. So, yes, 3 days was plenty of time to do everything we wanted to do. The folks at BMCF could not have been any nicer and we felt like royalty while we were their guests.
I’ll close for now. Wishing everyone a very blessed holiday!
Video of bone marrow biopsy. Warning, it’s pretty graphic! (And yes, Alyssa was pushing to get this done in February... Crazy.)
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