Husband with AML facing a stem cell transplant

Good morning!
Thank you for your kind words and encouragement. My husband’s transplant went well yesterday, no complications! Actually, it was quite moving. The chaplain said a beautiful prayer just before the stem cells were infused. I can’t tell you how it felt to watch the blood move in the IV line and into him. My heart was bursting with gratitude and hope.
After a couple of hours, he ordered pancakes and potatoes for dinner! I felt all the prayers being sent up for him/us, truly.
Another fun sign we got was that his nurses’s mane was Abby. That’s our beloved dog’s name too. So we felt like our “pack” was together in spirit! lol.

My husband is good about telling the medical team if he has any new symptoms. We realize how important that is to stay ahead of any complications. I also know that the next couple weeks will not be a walk in the park for him. But I trust the team caring for him to help as best they can to keep him comfortable and nourished. Thank you and @loribmt for generously sharing your experiences and for your support.

Here’s a photo of one of the walls in my husband’s hospital room. We not only celebrated his new re-birth but also our 19th wedding anniversary yesterday! Such a blessing.

@katgob I pray you continue to heal and recover nicely!

Mary

To you both! My days following the transplant included 2 more rounds of a chemo for a research study i was in. Fatigue did get me. Partially due to the nausea meds, one being Compazine which made me tired. I also had nausea. Yikes for a couple days. The meds did not stop it. I was then given a nausea med called "emend" that was good for 72 hours. It worked. They said at the City of Hope that it is only used in tough cases. Well, barely eating for two days is not good. I say always tell the daily visiting DR and your RNS how you feel. Mine listened. After the 72 hour pill, it was for my graft to take hold. I had my transplant the 9th and was out of the hospital the 29th.
By the 29th my graft numbers were very good. I had MDS, so my symptoms were a bit lighter as time went on. No cancer cells to fight. Just following all the guidelines for th4e rest of my 100- day journey and beyond.

rayj and Mary, I hope you keep all of us updated so we know what is going on and we can support you. Lori always has bunches of info to share. A Godsend.

Thank you Lori

Hi @rayj. I just replied in another comment to you. I’m just tossing this site in along with the others I sent you. This has so much information for new SCT patients. There is a section on finances. Most insurances pay for the procedure and followups.
Here’s the link to a really helpful site called the nbmtLINK. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

And here is the link to my reply in your other post! https://connect.mayoclinic.org/comment/1085653/

We’ve got your back here. So read up on all the material and don’t hesitate to ask anything that comes to mind!

Thank you for all of this. I am on the evaluation side of things right now. I am 30 miles from the UNC cancer center in Chapel Hill NC. My.next big worry is cost. So far I'm fortunate.

Hi Mary! I had a feeling ‘we’ were getting close to Day 0! It’s generally such an anticlimactic day considering all the hype and worry leading up to the infusion of stem cells. But it is quite literally the first day of the rest of your husband’s life…a 2nd chance at life. His room sounds very cheery and uplifting. And I know you bring the sunshine to his life every day. 💕 You two are doing everything right and it’s wonderful that the chaplain will come to lend sense of spiritualism to this enormous milestone in both of your lives.

I’m glad the apartment idea is working out so well. That was a brilliant move on your part. Saves a huge amount of stress and energy for you being so nearby the hospital without fighting the daily traffic and finding parking! You’re both having separate but collective adventures right now! There will be lots of moments to talk about for the years ahead.

You’re adapting so very well to this, Mary. For a short while all of this is your new reality. But it’s not forever, it’s just for the time being. Most aspects of your former lives will resume once this speed bump in your otherwise smooth road of life has been cleared. But there will be more doctor’s appts, blood draws and little changes that might seep in. That will become the ‘new normal’…hate that term. I refer to it as my altered reality. But honestly, it’s a life I would not change if I could!

You are correct in that the next 2 weeks can be a little taxing as the side effects of the preconditioning chemo kicks in and from the transplant itself. As the blood cell count drifts south, fatigue will really take over until engraftment of those new stem cells takes place anywhere from 12+ days, at the earliest, past transplant. When his neutrophil count starts rising, he’ll start feeling much better. Don’t despair. It’s just something he has to go through but once he’s on the other side of this…watch out! You’ll have Superman ready to don the cape and tights and take on the world. LOL maybe not…
Happy Anniversary to you both and Happy Re-Birth to your husband. Give him an air-hug for me!
Prayers for a successful transplant! 🙏 Lori

Good morning Lori!
Thanks for checking in. We are at day -1 today! Tomorrow is our 19th wedding anniversary AND my husband’s second birthday! The transplant is scheduled for 3pm. The chaplain here will be giving a blessing and I hope to sneak a little slow dance in with him when we have a few minutes to ourselves. So our odyssey continues! He is stable at the moment. The only hitch has been some high blood pressure readings but he has also had a lot of fluids and Busulfan and Fludarabine “clean out” chemo. Today he started Tacrolimus and Methotrexate starts day +1.

I expect the next week or so to be rough for him so I’m trying to relax into that and know the team here has tools to help him through it. Plus I will be here to help him be as comfortable as possible.
Renting an apartment a few blocks away has been a life saver for me. I’m doing his laundry every day and able to get out for walks instead of spending 2 hours in traffic from home in the morning and evening.
This remains surreal to me. Every now and then I feel stunned that this is our reality and I know the same is true for him. But we are resilient and are adapting.

I decorated his room with photos of our family and friends. I hung hummingbird decals on his windows and I am bringing a Happy Anniversary and a Happy Birthday sign to hang in the room. All little ways of staying positive and bringing a little cheer. The summer sunlight and longer days sure does help too.

Wishing you joy and the best of health as you near your stem cell transplant anniversary!! 🙏

Mary

Hi Mary, I just feel it’s time to check in with you and your husband this morning….yes, I am one of those whooo whooo people who feel ‘vibes’. 😅 I know we talked about your husband’s transplant happening on your anniversary but I don’t think we discussed an actual date. So, where are ‘you’ in the process? Pre-transplant testing? Preconditioning happening or is this a week or so out yet? Inquiring minds want to know. ☺️

Good Morning, Mary! Wow, you’ll both always remember your husband’s new Re-birthday! Same as your anniversary. Hopefully that doesn’t mean he gets skipped over for his 2nd birthday gift each year. Geesh, that’s like having a birthday near Christmas. LOL The celebration of my arrival on the planet is in January. My CELLebration of re-birth is the end of June. Spaced perfectly for 2 celebratory gifts. 😅

Sounds like you’re getting all the ducks in a row for the big day. Like you, I find it interesting the different protocols for transplantation depending on the Clinic/hospital. I hesitate to bring up my story of how it was handled at Mayo because I don’t want to plant any seeds of doubt for your husband’s transplant! Your husband is in a very well renowned transplant center and there should be no shadow of a doubt with them! Trust the team and the process!!

From my experience with being an outpatient at Mayo, I found I felt much less like a patient, being able to convalesce at my ‘home away from home’ 2 blocks away. Our hotel was connected to the Clinic and short wheel chair ride (first couple of weeks) down the enclosed subway system linking surrounding buildings to the Clinic.

I was able walk around the apartment, get my own food out of our fridge when I was hungry and not having to rely on hospital food service. I was so nauseated, I can tell you nothing on the menu would have fed me. The transplant floor had a well stocked fridge for patients but even that didn’t appeal much. So those little meals my husband had prepped and ready were literal life savers. In our apartment I could shower and get dressed on my own, use my own bathroom all in the safety of my completely sanitized and people free environment. Statistically, (which is totally a Mayo thing) patients are less susceptible to infections or health risks when not being confined in a hospital.
However, just because I was an outpatient it didn’t mean I was left to fend for myself. If there was ever an issue I was immediately admitted to hospital for care. As routine, I reported to the clinic daily (with my husband) for blood work and infusions of meds or whatever I needed.

You’ll have an entirely different experience to relate here. Try not to overthink any of this! I know I’ve said it before…let the team and his doctors do the worrying for you! This isn’t their first rodeo. They’ve got your backs…both of you!
This will all unfold as it happens. So while it’s excellent to be prepared for any eventuality, most of them you won’t even be able to predict. But you’ll handle them as needed…when needed. ☺️

Believe me, there is a life after transplant! I walk around humming with unabashed glee for being alive…🎶 “Gonna be the best day of my life…”🎶

Ok, as my daughter says…Mom, turn the perky meter down. You’re in the STUN zone! Haha. Have a great weekend!

Mary612
City of Hope where I had my transplant did have me stay in the hospital until they noted my graft was taking place. Day 24. Up until I went in the week before I still did not understand if I needed someone while I was in patient. Really? I have RNs and more in the hospital. I kept thinking why they had not clarified. I finally got one of the transplant team to say that no, I would be cared for in the hospital. It was the 70 plus days after I would need a caregiver. That was wonderful. I did not have anyone to stay local with me, so my caregiver's home is 15 minutes from COH. I pray your husband has a smooth journey. Fatigue in the hospital and nausea were my side effects. Both were addressed by the daily Dr team and the RN's assigned to me. How are you doing is a 1st question from all. Above all else, tell them about any effect you have on any day. The medical team is there to help you through this jouney. Mayo has a wonderful team that Lori speaks of often.
Taking it a day at a time, you will find acceptance and hope. As Lori told me, a new birthday for a new life will happen. April 9th is my transplant birthday. I look forward to your future posts.
Prayers to you both.