Since I last posted we have received more crappy news… I started the immunotherapy which Dr. Perry seemed so positive about. Steve’s health insurance is covering most of the cost of this very expensive medication. An amazing organization, The...
Since I last posted we have received more crappy news…
I started the immunotherapy which Dr. Perry seemed so positive about. Steve’s health insurance is covering most of the cost of this very expensive medication. An amazing organization, The Ryan Saturno Patient Amentities Fund, stepped up to help with the rest. The immunotherapy is received through an IV at a private clinic in Cambridge and takes about an hour every two weeks.
After 6 rounds of immunotherapy I had an MRI, and we were once again devastated with the results. The treatment was working on the large front tumour and keeping it contained, however, there was significant growth (25% bigger) in the tumour at the back of my brain. It was beginning to put pressure on my spinal cord. This is very serious as paralysis from C1 downwards will begin to set in as this grows and the spinal cord is compressed.
So, treatment on that tumour was needed.
Radiation was the only option, as this spot was not responding to any chemo or the immunotherapy. So, on January 24th I started another course of radiation, this time to this spot which is wrapping my spinal cord. This time, instead of driving daily into Toronto, we have rented an apartment. It was extremely difficult in 2015 doing the daily drive into the city, and we couldn’t imagine doing it with Aubrey now. We have a lovely basement apartment just 8 minutes from the hospital.
I go every day (Monday – Friday) for 5 1/2 weeks.I am about halfway through the radiation now. I am very tired and have horrible headaches. Recently, I have been having some issues with my feet and hands. It feels like there is a bunched up sock under the ball of my left foot. It is not painful, but very uncomfortable and this “sock” moves. I had a lot of trouble walking Monday as the area grew and I was only comfortably able to walk on my heel. My radiation oncologist isn’t sure what to think….it could be swelling around the tumour which is causing some paralysis, but it would be VERY fast to have this happen and the fact that it is rather sporadic doesn’t make sense. My hands are different, they do go numb (like pins and needles) from time to time. I think this is very much linked to the amount of time I spend feeding and carrying Aubrey though. I can feel a nerve in my elbow being pinched the longer I carry her. Trying to figure out something to help … and I am trying to switch up which way I carry her to divide up the pressure.
Steve and my Mom have been AMAZING (my Mom stays with us in Toronto) and they are doing so so so much to help Aubrey and me. Aubrey keeps us smiling, and has the very best laugh ever! She is getting so big and learning new things every day! She knows that something isn’t right, and it breaks my heart. She doesn’t like seeing me in bed, so she sure is my motivation to get up! Steve’s parents have also been very helpful and have had Aubrey with them a few nights so that my Mom can get a break. We do go back to Guelph most weekends and usually have our amazing friend, Vanessa, stay and help out. Thank you all so much!
I am not yet sure when my next MRI will be, but will certainly post an update. PLEASE keep sending those prayers and positive wishes.
Love to all!
