Friday, June 28, 2024
They were able to expedite testing and have ruled out complications from the measles so as of right now there is no need for the brain biopsy.
The virus is the humanpolyomavirus or JC virus named after John Cunningham. The virus itself is likely in most people but usually is dormant until something triggers it. Low immune system, or things like MS or Sarcoidosis can trigger it. So unfortunately Mike had the sarcoidosis going on so was put on immunosuppressants for that which probably made things worse. When triggered the JC virus causes Progressive multifocal leukoencephalopathy or PML, which is what Mike now has going on. There is no treatment of PML in Canada but there are a few options in the states. The doctors’ first choice is an antiviral therapy that is only administered in Cincinnati and Houston. It’s a therapy that uses immune system cells taken from other patients that are primed to attack the virus, so because of the nature of this Mike has to be donor compatible. They are waiting for results to confirm if he is or not. The second option is a treatment in a hospital in Maryland that basically charges your own immune system so it can fight the virus itself. And the third is a drug that is not approved in Canada but if we pay for it they can get it here for him. It’s not clear if or how much of his functions he can regain if they are successful in getting rid of the virus. If they can get rid of it there are a lot of physio options to help him. This is all extremely rare so there are some but not a lot of case studies to compare his case too.
He is being discharged this afternoon so we will be home again and hopefully hear back from doctors soon.
Thursday, July 11, 2024
First of all I just want to say how truly blown away we are after last night. Our community held a fundraiser dinner and auction for Mike to ensure that we are able to do all that we can to get him the best treatment and recovery options. It was incredible and we are definitely feeling the love. Mike wasn’t up to heading out yesterday but we were able to watch a lot of it through Facebook livestream and the many videos sent to us. It was almost like we were there. Thank you all so much ❤️.
I haven’t posted in a while because things have been going back and forth a little and I just didn’t want to put anything out there that wasn’t for sure. But plans are in place now for treatment at the Cincinnati Children’s Hospital. They have a program there called Viral specific T-cell therapy, it is a clinical trial but it sounds promising. We keep hearing positive stories about this treatment so while all the waiting is getting old, we are hopeful! Mike has still been continuing to get a little worse every day. He can’t talk and can’t walk but he still can stand and transfer from chair to chair. The final paperwork is being processed on the Cincinatti side and then they will make an appointment for him to come in. The infusions are short and it’s all outpatient procedures so it sounds like it might be many quick trips back and forth as he still will have to be monitored and assessed in Calgary after every infusion. I’m not sure how all that is going to work yet but hoping to hear finalized info very soon. We will continue to update as we go along. From the bottom of our hearts, thank you all for everything!
Friday, July 12, 2024
We received info on Mikes first treatment appointment! We’ll leave for Cincinnati Monday evening and be back Thursday night. Sounds like appointments there will be every 3 weeks. Then he’ll have follow up appointments with testing in Calgary in between as well as physio and speech therapy at Synaptic Neuro Rehabilitation Center every week for the foreseeable future.
We are so thankful for all the fundraising efforts, it has been phenomenal and has made all the difference with options for treatment and recovery!