Wednesday, July 17, 2024
Mike just finished getting his first infusion. We spoke with one of the doctors that helped develop this VST therapy. It was really encouraging to speak to people who have dealt with this before. She was telling us that she’s seen people in very similar states as Mike make impressive recoveries so we are hopeful and feeling pretty good about it right now. We should know in two weeks if the cells are making positive changes through lab tests, but even if they don’t it sounds like there are options with other donors. After testing and results are in the doctors here will consult with the doctors at home what the next steps will be regarding the timing and frequency of the next infusions.
Thank you again for all for your continued care and support!
Tuesday, July 30, 2024
Nothing new to say yet… Just thought I’d post a quick update
Mike has his 2 week checkup appointment tomorrow in Calgary. He will have a lumbar puncture to test the level of the virus. So far we haven’t noticed any improvement since his injection but the doctor did say it was quite possible that we would see a drop in numbers (measurement of viral load in him) before he would see or feel physical improvement. So we hope for a drop in numbers! We likely won’t get test results until next week though so still more waiting. If the numbers don’t go down they said they could try a different donor and if they do go down they will schedule him in for future injections until the viral low is significantly lower.
We will update when we know more but that’s all we know for now.
Thursday, August 1, 2024
Yesterday we went to Calgary for the lumbar puncture test. They told us that results would take a week or so because they have to send the sample to Winnipeg to test the level of the virus. While we were at the appointment Dr Hahn noted that Mike was declining again. He had been having a rough time this past week with more trouble swallowing and with speech and general weakness. So he sent him for an MRI to see if things had gotten worse. The MRI showed no new lesions in his brain but lots of inflammation activity, which was what was causing the worsening symptoms. While the inflammation is concerning and has to be monitored it also means that the t-cell therapy is working. So while it’s been a hard week it’s also a small victory! Dr. Hahn did tell us to up his prednisone dose just a little to hopefully relieve some of the pressure and stabilize his symptoms but they can’t raise it too much or that will counteract the new t-cells. So we will continue to monitor that. The next infusion in Cincinnati will be scheduled when the lumbar puncture results come back , should be sometime in the next two weeks.
Tuesday, August 6, 2024
Mike had his weekly checkin with Dr Hahn today. The results came back from the lumbar puncture. In June his numbers were high at 5.23 and last weeks test was 1.73. So significantly lower, which is really good! Means everything is working to target the virus. While he still doesn’t feel any different yet, still a little worse actually from the inflammation, we are happy that at least the numbers are going in the right direction. They say this virus causes damage to the nerve coatings so that might have to heal first before we see any improvements. And it’s still unknown how long that might take and how much improvement there might be. We go back to Cincinnati on Thursday for a Friday infusion appointment then fly home again Saturday.
Thank you for all the prayers, well wishes, visits, meals and support / help of all kinds! Not sure how we would manage without it all. ❤️