My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

This is fantastic news, Theresa. Thank your for sharing this article!
I know BMT is also now being considered more frequently for MS and other auto immune diseases, since those are caused by the our own immune systems attacking our body, By having an entirely new immune system, the old auto-immune response disappears with the conditioning chemo before transplant.
However, the procedure is extremely taxing on the body, not easily tolerated and comes with its own set of issues and side effects At this point it’s considered only with a great deal of caution. But it’s a godsend to those who have no other options.
It will be interesting to see how this might change in the future.

While most of the posts in this discussion group are related to a cancer diagnosis, I read a Mayo Clinic article that explains a new use for bone marrow transplants. This relates to a rather rare neurological order. Take a moment to read this article,

- Research into rare neurological disorder gives Lisa Miller a new lease on life https://newsnetwork.mayoclinic.org/discussion/research-into-rare-neurological-disorder-gives-lisa-miller-a-new-lease-on-life/

Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is a certain amount of the graft vs host that is necessary to establish great results! So don’t despair. ☺️

@mtoyne2021, I saw mention of Gift of Life House. I am a liver and kidney transplant recipient. My husband and I lived there for 13 weeks in early 2009 before and after my transplant. It was a perfect match for us since we were far from family and friends. We found it to be a place of hope and compassion and healing. It is clean and welcoming with private bedrooms and bathroom. Patients can also have labs drawn there by an arrangement with Mayo. If I can be of assistance, I'm here.

Hi Lori:
My 19 yo daughter was diagnosed with AML with t6;9 mutation October 8th, 2021. We are scheduled for a biopsy November 19th to determine consolidation chemo regimen. BMT tentatively scheduled for January 2021. We're trying to decide where to live post BMT to stay near Mayo in Rochester. Have not toured any places yet. Are looking into Gift of Life, Hyatt House, and Centerstone. Any advice would be very much appreciated.

Sometimes with these aggressive cancer like AML it’s better to have an unrelated donor. There is a certain amount of the graft vs host that is necessary to establish great results! So don’t despair. ☺️

Hi Lori,
Thank you for your kind words. We did feel hope after meeting with the doctor at Mayo. We feel very fortunate to be close to this world-renowned facility. The donor search has begun. Unfortunately her brother is not a perfect match but the doctor was optimistic going into the database.

It’s my pleasure to help you and your daughter in any way that I can. I wished that I’d had a mentor to talk with who had firsthand knowledge of what I’d be experiencing. I had outstanding medical care and my team at Mayo were wonderful in guiding my husband and I every step of the way. But until someone has personally walked that walk…
Truly, I feel like a walking miracle and my gift is being here to pay it forward.

I’m relieved for you that your daughter is now in the hands of a BMT team at Mayo. They really are incredible. Surviving the AML treatments and knowing the remission wouldn’t last without a transplant, it was with huge trepidation that I went to meet my new doctor at Mayo. But honestly, my husband and I knew the instant we met my transplant doctor, that this was the man who would save my life and Mayo Clinic was where I needed to be. There’s an underlying calm confidence there and it instills us with hope.

You’ve already had so much heartache and anxiety over your daughter’s AML diagnosis and her rough induction chemo. I want you to know, the rest of this journey won’t be easy. It’s an all out war with battles like no other! But this war is winnable! I’m here to instill hope for your daughter and your family. I’ve walked this walk and I’m an old lady! Your daughter is young and made of pretty tough stuff! She will come out of this strong and healthy! There’s going to be ups and downs the first few weeks after transplant. But once the new cells engraft, she’ll bounce back and keep on going. Don’t lose faith!

Encourage her to keep physically active. Even though she won’t feel like exercising it’s vital that she continues to walk daily. The healthier we keep ourselves through these initial months the better the outcome. But also it’s important that she listens to her body. If it says nap, NAP! 😉

Please don’t hesitate if there is anything you want to talk about, or if your daughter has any questions or concerns. I’m here for you and my husband is great with offering help as a caregiver. It’s not easy watching someone you love go through all of this.

Has the search for a donor begun?

Thank you for your reply and valuable information. We had a rough start to this journey (heartache and tears plus her induction was tough and took place at a different hospital) but are now encouraged by our doctor at Mayo who we met with on Monday. We also had bloodwork and many appointments (including meeting our social worker) that day and this week, we are able to enjoy some down time at home while her counts recover. She's in high spirits as this is the first time in weeks she's felt somewhat normal. We were hoping to check out some of these hotels/extended stays before we make our final decision. I will definitely add the Mariott location to our list. As far as how I am doing, I am doing much better than 6 weeks ago. God has his hand on her life and has been showing our family how much He loves us. I am so thankful for the incredible staff we've met so far, this Mayo forum, and for you for taking the time to respond.