02/27/2024
An unfortunate update, 17 months post-HSCT. Long post ahead.
Taylor had been cruising right through and doing very well, and she suffered a set back in the past few weeks. It’s taken me some time to gather all the available information, and I hesitated in posting right away because I didn’t want to make an emotional, senseless post.
Towards the end of January it was determined that Taylor’s bilateral chest ports (once used for weekly plasma exchange) needed to come out. They had clotted off, and we were no longer using them, so the procedure was scheduled for 1/23/24. She did very well initially, and was happy to have the ports out of her chest. Within 48 hours of the surgery, she informed me her left hand and foot were going numb, and not mild like what we’ve experienced intermittently since HSCT, but completely without sensation, and it was climbing up her extremities. She was hospitalized 01/26/24. Her initial, standard 1.5 Tesla MRI with and without contrast, looked relatively the same as last year in the summer, when she was doing very well. We decided to pursue high-dose steroids, as the numbness was worsening. As before HSCT, steroids had little effect for her. Within days the numbness had moved to both sides of her body and crept up to her bra line, and she was no longer able to stand and hold weight on her legs. So several days after removing ports once used for regular plasma pheresis, she had to have a temporary dialysis catheter placed in her neck to begin 5 treatments of plasma pheresis. The radiologist who read her MRI spoke with our Neurologist in the hospital about her case, and as it turns out, he was specially trained in Neuro-Radiology. He understood how important a good scan was for us, and suggested we do another scan with unique sequencing - a Double Inversion Recovery (DIR) MRI scan. This scan is reportedly 500% more effective at identifying active MS lesions, and we have never heard of this type of MRI nor had one completed before. She underwent the test, and results showed two or three tiny lesions on the brain that were “indeterminate” and “could indicate the subtle presence of active demyelinating disease which is below the limit of detection on conventional imaging”, and a possible new, active lesion in her neck at C3 (though the use of DIR has not been studied in c-spine scans).
To say we were devastated at first is a huge understatement. I thought immediately this classified her as a non-responder, and that the horrors of 2022 were starting again, full cycle. After some research, I discovered there are 3 classes of responders post-HSCT: Responders (who do well and have no further activity on MRI), Non-Responders (who never have cessation of MRI activity at all), and Failed-Responders (who do well initially and then suffer a relapse and have active lesions on MRI). Taylor seems to be classified as a Failed-Responder. The good news is that Failed-Responders tend to still have decent outcomes after HSCT. The recommendation (though admittedly poorly studied as we are in fairly new territory) seems to be a treatment protocol with Rituximab in order to induce remission again. We are working on getting this ordered for her now, and if it gets cleared by insurance (🤞🏼), she will have this infusion every two months over the next 8ish months.
As before, Taylor responded well to plasma exchange and after the first two sessions, her progressive numbness and weakness halted in place. She was still unable to walk, and was back to the wheelchair, which is the way she came home on 02/04, the dialysis catheter now removed.
We moved through every damn stage of grief fairly quickly this go-round. As it has been explained to me, her disease is much less severe than it was prior to HSCT, and we are hoping it is more manageable going forth after having received the treatment. Overall, her disease burden is rather mild…it’s just these pesky C-spine lesions that cause her so much disability. And, for all intents and purposes, her MRI scans do not reflect the level of disability she left the hospital with. It is a puzzle.
Since discharge from the hospital, she has shown improvement, but it has been excruciatingly slow. She is now standing (albeit very shaky) with PT, and was even able to take some steps the other day, with heavy assistance.
We have hope. We have accepted that occasionally in life, this may be what happens to her. It’s sucks that out of nowhere she can lose the ability to walk for months at a time…but you know what? She’s still here, so it’s really not so bad. We’re looking into getting her Jeep modified so she can continue to drive during these phases and not have to have her life completely disrupted by missing work and whatnot.
Since all this has occurred I have harbored a sneaking suspicion that Failed-Responders are perhaps more common than reported, as most people are not getting these DIR sequenced MRIs. If we hadn’t run across this particular radiologist and completed this study - we would still be classifying her as a Responder that had reoccurrence of her worst MS symptoms post-op. It’s a wild thought. I also want to point out that, having never had the DIR sequence MRI before, we don’t know what her scans looked like under this sequence before the surgery.
I am still so very glad she was able to have HSCT, and I would still recommend it to others as soon as possible after diagnosis. It changed the game for her, completely.
In happier news, on 02/13 Taylor finally got to meet someone she has been friends with online for several years, someone who became her boyfriend not long after her HSCT in Mexico. His name is Soli, and he has joined us from Israel for the next few months. His arrival came right as we were moving into acceptance, and pretty much pushed her all the way into “who cares, my life is FANTASTIC” 😂♥️. He has never been to America, and we are having fun showing him around. Taylor’s mood is actually really positive currently. I can’t fully explain the peace we have, in this situation, it just doesn’t make sense…but maybe it has something to do with Faith.
I know God’s plan for Taylor is one that is FOR her, and we will see it through. We have some decisions to make, after the Rituximab, about starting immune-modulator therapy again. I’m sure we will figure something out. I have been in contact with the clinic in Mexico, and they have strongly encouraged the Rituximab and offered to evaluate her for a second HSCT in the event she continues to have relapses after. I had an emotional response to that as well. While it did significantly help reduce her disease burden and improve her quality of life, I’m having trouble seeing the benefits of doing it twice currently. Either way, we have time to research (what little data there is), and come up with a plan. I’m sure the right path will reveal itself.
In addition, I wanted to let those with MS know of another factor in all this - if you have testing for the JC virus within 5 weeks of having IVIG, you may very likely get a false positive on your JC virus testing. I saw these statistics in 2022 when Taylor first was diagnosed. She had tested positive for the JC virus and we moved away from our first choice of medication(Tysabri), because of it. I realized later, after we had started Mavenclad, that her test was done not long after receiving IVIG, and wondered if it was a false positive. We did not get IVIG this hospital stay (it has never helped her anyway), and I requested she be retested - she was JCV negative this time, confirming my suspicions.
This is where we are, and I am ever-aware that it could be so much worse. ♥️ I will keep you guys updated on Taylor’s journey, as always.
Brooklyn
