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

I was diagnosed with AML in March of 2016, and had my stem cell transplant in August of that year. The journey leading up to STC included two induction chemos, which kept me in the hospital for 7 weeks, and then three consolidations. I was in remission and my doctors started talking about doing the transplant. None of my four siblings turned out to be my matches, but a 21 year old German college student was 10/10 match! I'm very grateful that he decided to donate to someone he didn't even know.

My transplant was successful, while two of the friends with AML whom I met during that time did not survive. This was a bitter sweet experience because I survived and was recovering, while they were dying.

Because I had moved twice since my transplant, I'm at my third BMT clinic. This time it's Mayo in Phoenix, AZ. I am very pleased with my doctor and how thorough she is. I feel like I'm in good hands now.

I've had GVHD off and on, and currently have skin GVHD. I'm also in the process of getting a diagnosis for a liver disease. It doesn't looks like GVHD according to my doctor, so I'm waiting do a biopsy and an MRI next week.

I met my donor in July of 2019. He and his dad flew from Germany to meet me. It was such a treat to meet him, to share my story and hear his story of why he chose to donate his stem cells.

After two and a half years out of work, I'm back working in higher ed., doing what I love. I had to move to get this job, but I was determined not to let my health problems stop me. My new normal is very different from what it was before getting AML. I've learned to be grateful for each good day, enjoy simple everyday things, appreciate my family who supports me and thankful to God that I'm still alive.

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Thanks for sharing your story!

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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.

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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.

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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.

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Hi @mtoyne2021 Golly, my heart stopped a little when I saw your posting. Your daughter is only 19 and having to face this enormous life challenge. Children should never have to suffer from cancer. So I’m truly sorry she has to go through all of this, along with you and your family. It definitely ‘takes a village’.

I can promise you, that she could not be in better hands than the BMT teams at Mayo Clinic. She’ll hear this over and over…she is married for life to this amazing group of doctors, NPs, nurses and staff. They will be her lifeline and extended family. I’m 2.4 years out from AML/Transplant and I still receive regular communications with my doctor and team members, along with appointments at the clinic on a regular basis.

Never hesitate to call on any one of them via portal or directly with numbers for Station 94 (the team providing care the first month) and the transplant center. These numbers will be given to you when your daughter has her instructional courses. We’ll talk more about this as the date draws nearer for transplant.

In the meantime, finding housing… When your daughter has her transplant, it will be an outpatient procedure. Initially she’ll be in the hospital for only a few days pre-transplant and the day of transplant. Usually the day after transplant, she will be able to return to the hotel or wherever you’re staying. She’ll be expected to report to the clinic daily for blood tests, possibly infusions for anti-fungal meds and magnesium so you’ll want to be close.

Having a place connected to the subway is really convenient as you can borrow a wheel chair from the clinic to use while you stay. The first week or so your daughter will be weak and most likely need that chair. No worries, she’ll feel like a princess as she rides around to and from her appointments.

For my extended “vacation at Club Med”, my husband and I stayed at The Marriott Residence Inn. It’s connected to the clinic via the tunnel (subway). We had a 2 bedroom, 2 bath suite with a full kitchen, refrigerator, dishwasher, stove/oven, microwave. There are single bedrooms available. They are all suites though so even a one bedroom has sitting area with a sleeper sofa and a full kitchen.
Seeing that you’ll be there for several months, many hotels, including the Residence Inn, have leases whereby the rates are less and you don’t pay local and county room tax.
Check with your daughter’s insurance. Often they pay for a significant portion of lodging.

Lodging around the clinic is plentiful for transplant patients. One of my fellow mentors,who had a liver/kidney transplant, stayed at the Gift of life.
This is her reply to another member just yesterday. https://connect.mayoclinic.org/comment/654424/
https://gift-of-life.org/

There are a number of VRBO homes nearby https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic
Below are links to the clinic’s guides for hotels, what to bring, and the concierge services. Concierge is invaluable in helping to find lodging and answer questions you might have.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/hotels-lodging
https://www.mayoclinic.org/patient-visitor-guide
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic

When your daughter meets with the transplant team, she’ll also be assigned a social worker. They will be another outstanding source for lodging, financial concerns and emotional needs during transplant.

I know I tossed a lot of information out for you. Please take your time to narrow things down and we’ll go from there.

Your daughter has gone through her Induction phase of chemo for AML. So this will be an important BMBX for her. (Bone marrow biopsy and exam). Because her transplant will be a few months out, don’t be surprised if, after Consolidation, that she’ll need another round of maintenance chemo to keep her in remission until right before transplant. Much easier than Induction!
Your daughter is young and strong! She’s going to come out of this feeling invincible. I’m going to be 68 in January and I feel like I’m in my 20s!

How is she handling everything? And, how are YOU doing? Being the caregiver is incredibly stressful and emotional.

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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.

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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?

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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.

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