It’s been a while since an update. Brian has had a rough few weeks since the start of the post transplant spinal tap chemos. Then there was a medication error that set things back further. Once that was figured out last week (not by the medical professionals) the neurological symptoms he was experiencing began to improve. Seeing him with what seemed like severe Parkinson’s symptoms was sure scary! Glad that’s behind us and it proves how important having an advocate and someone who knows the patient day in and day out is important to ensuring the best care. We have an appointment Tuesday and the medical professionals have some explaining to do. I want to know how it happened, and will be avoided for other patients! Hopefully, I will sound nice when I ask but can’t really promise 🥴.
They decided he will not have to go through the third and final spinal tap, since it was never in his central nervous system and it has set him back so much. We are so thankful for that! The PET scan last week shows no cancer and so that’s a huge relief! Tomorrow afternoon we should have the results from last weeks bone marrow biopsy. They don’t expect it to be anything but clear, since it never showed signs of cancer from the beginning.
You are probably wondering why today was such a good day. Well it’s the little things! Today, Brian wore jeans for the first time since early October. We also met our manager, Ali for lunch. The picture is from lunch today, doesn’t he look great!🥰This was Brian’s first time in public and eating out since before the transplant. We are about 67 days post transplant and thankful for everyday we put behind us. Day 100 is a huge milestone in this journey and we are getting closer! What a whirlwind it’s been, with so many ups and downs. At the end of each day we are thankful for each little accomplishment!
Thank you for cheering us on from near and far! It’s the love and support each of you give, that gets us through the long days!
❤️, Brian and Megan
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