I want to leave Johns Hopkins so badly that I practically need anti-anxiety meds just to keep me from bouncing off the walls. We were admitted to Johns Hopkins on June 13th, 2019. It is now August 14th, 2019, as I type this.
There is much to be thankful for. It’s been nearly 60 days since my bone marrow transplant from an unrelated donor, and I haven’t displayed any issues, infections, or symptoms of Graft vs. Host Disease (GVHD). Tomorrow we’ll be meeting with the Clinical Director for Oncology to review my medical history, followed by a full-body CT scan to verify I have no additional recurrences of cancerous tumors. On Friday, I’ll have my Hickmann Catheter removed in interventional radiology. Hopefully, we’ll be returning home on early Saturday morning.
God willing, of course… it’s been such a long journey, and there is much to be thankful for. And now? Now we’d simply like to go home and be reunited with our family & friends.
Thinking of you often and wishing for an uneventful departure.
Thanks, Aunt Jane.
Usually, if there is to be acute Graft vs Host Disease (GVHD), it happens within the first 100 days. That I’ve lasted 60 without any real issues is a godsend and gives us hope. Chronic GVHD can still occur, so they’ll be drawing my blood weekly to monitor for the next year.
Happy to hear that you are going home soon. Kiyomi and Toshiro will be happy to see you too.
Mom, this has truly been such a LONG journey. After 16 months of chemo, after 16 months of vomiting, diarrhea, dry heaves, wild weight swings as I rapidly gain or lose 40 lbs, and then being confined to the Johns Hopkins campus for a couple of months, we so badly just want to go home.
Vicky and I cannot thank Brad and Chris enough for watching over Kiyomi & Toshiro while we were away. Kiyomi had a medical emergency, had to get rushed to the vet with a severe bout of pancreatitis while we were away. She’s been on antibiotics for the past month, and will be on a special prescription diet for the rest of her life. As far as we know, Toshiro has been fine.
Personally, it’s been such a long journey, that I’m exhausted when any more shoes drop. We dug into our savings multiple times to make all of this possible. It’s been tiring and expensive, and it’s not over yet. We had house damage (between lightning and water damage) while we were away for 3 months. It’ll cost me several thousand to get it repaired over the coming weeks. I’ll need to meet with contractors to get quotes, and avoid them while they tear apart our walls and plumbing.
And so it goes… it’ll be nice just to be home again, with our pups underfoot and reunited as a family.