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

Discussion

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

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)
Comment receiving replies
@mtoyne2021

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.

Jump to this post

Replies to "Thank you for your reply and valuable information. We had a rough start to this journey..."
Lori, Volunteer Mentor | @loribmt | Nov 19, 2021

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?

VIEW AND REPLY