Waiting for donor match

Oh my goodness, @babettevroman! What a rollercoaster of emotions for you! I’m so sorry to hear about your two donors not being able to commit. It’s incredibly frustrating to be living on the edge like that when you get your hopes up! Plus having relocated for the duration and now your return home is delayed. On the plus side, Rochester is a nice place to spend your days but it’s not Washington state…or home.

There are so many of us in the forum who have had bone marrow transplants and know the anxiety of waiting for a donor match. I certainly hope the next donor search yields someone who will honor the commitment and follow through for you.
Feel free to commiserate with us here! May I ask what was your diagnosis that led to requiring a transplant? Did you have all your cancer treatments in Rochester too?

My husband and I know very well what you are going through @babettevroman. My husband was supposed to have his stem cell transplant on May 30. I had rented an Airbnb for the entire 100 days and had to pay all upfront. We have only stayed there three nights when he was having his testing and numerous appointments before the transplant. We live in Iowa and would rather stay at home. His transplant has been delayed four times due to the donor, that was a 100% match. My husband has VEXAS syndrome and is in a lot of pain and we have had our hopes up since May that things will get better for him. They are now going with the second donor and his transplant is scheduled for September 3. Hopefully this is it. It is such an emotional rollercoaster, not to mention a financial burden. I can't imagine how you are feeling having to stay in RST all of this time, and having all of these delays. I pray they find a match for you and that all goes well. Reach out if you ever want to chat, as we certainly know what you are going through.

Wendy, I’m so glad you joined in the conversation and reaching out to @babettevroman. I’m so sorry that your husband’s donor wasn’t able to commit either! That’s just awful. The anticipation of the bone marrow transplant is stressful enough without all this donor drama added into the mix.
What was the issue with the donor? Were they ill or just timing issues?

Hi Lori, They were very vague in their reply to my husband regarding the reasons why. We do know he was an international donor and they said he wouldn't be legal to drink in MN, so he is younger.

My diagnosis is Hepatasplenic Tcell Lymphoma. I’ve had all my treatments here in Rochester and have been here since 4-15. Going home has not been an option as the treatments were too close together to warrant a 1800 mile drive home! And after treatments were supposedly over I was to have a transplant.

That’s such a shame when someone signs up to be a potential donor and then doesn’t follow through. I know they owe us nothing but for the receiver, their stem cell donation is our 2nd chance at life.
Sending positive vibes that this second donor will be all in for the win! ☺️ I know I’m not the only one who wants to know how this plays out! Will you keep me posted please?

“Home” must feel like a foreign concept right now. It will be so strange when you finally get to return to Washington. I remember my first trip back home after 4 months in Rochester. My husband had been home a few times on weekends when our daughter would drive down from Minneapolis to ‘baby-sit’ me. But I’d not been home for the 4 months. I got all weepy when we started getting nearer our city and full out ‘ugly cried’ when we pulled in the driveway. My BFF & neighbors were there to wave me in. Oy. It was so emotional but wonderful to be home. I realized that my months in Rochester were so important to get me healthy and to the point where I actually had a life ahead of me.
So hopefully you’ll feel the same way…that this is a temporary medical odyssey that you have to endure and once that’s over, you’ll have been granted a second chance at life and can enjoy those days to the fullest.
What are you doing daily to keep distracted? Have you been able to enjoy Thursdays Downtown?

I can’t imagine your anxiety. Will put you in our prayers. My husband had two 100% donors and the first was international and that fell through yet we were fortunate that the second one came through even though he had to go through hoops and travel a lot to get it collected. But we didn’t know that until we got to talk to him this last month. He was in the states. My husband is 18 months post transplant. It will all be worth it. And this site is a life saver so stay connected.

I’ve gone a couple times to downtown sounds when my immune system was well enough to be in public. We have driven around the area and gone to a few events and state parks. We have our 2 golden retrievers here with us so exploring local parks for walks is always on the agenda.
Thank you for your support!

So sorry about all your delays as well! Sending positive thoughts for the 9/3 date!
They have reached out to various matches but no one has responded! Very frustrating. My daughter is a half match and they are proceeding as if she will be the donor. They are doing all of her blood work this week and hopefully the results will be in by next week and then we can set a date for the transplant.