Husband with AML facing a stem cell transplant

Posted by mary612 @mary612, Mar 15 7:05am

Hello!
My husband was diagnosed with secondary AML with 2 high risk mutations in January. The prognosis is not good. He is being treated at Northwestern medicine in Chicago. He is responding to the treatment after the first cycle but not full remission yet. They are recommending a stem cell transplant. I’m full of all the feelings! Scared, but trying to trust that my faith will get us through this.
My question is related to caregiver support after the transplant when he is discharged home. We don’t have a lot of family or big social circle nearby.
Any tips on the types of things we should start thinking about in order to give me and my husband the support we will need?
I found this group through the very hopeful messages of @loribmt. Thank you for your positive messages of hope!
Wishing everyone here only the best outcomes and graces!

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

mary612 | @mary612 | 2 days ago

In reply to @loribmt "Good morning, Mary and Dane! Ah, I see your husband is an overachiever. Haha Doesn’t surprise..." + (show)

@loribmt

Good morning, Mary and Dane! Ah, I see your husband is an overachiever. Haha Doesn’t surprise me a bit! 😉 Home is the reward! It’s quite a motivator! LOL.
It’s wonderful news that he’s engrafted ahead of schedule and doing so well. Those first two weeks are a joy, aren’t they? Giggle. But it passes and then it’s just a slow recovery period with moments of feeling exuberant like a puppy with a burst of energy and then sleeping for 3 days! Slow and steady wins this race!

Being home will help him recoup faster. That’s what I appreciated about my experience at Mayo where I was an outpatient. I find languishing in a hosptial room, no matter how nice, to be a psychological downer. Had 8 weeks of that with my AML journey. So being able to recoup at ‘home’ (in our hotel suite) was so much more positive and normal feeling. Less like a patient.

I don’t envy you at all being the caregiver. Everything is falling onto your shoulders right now. Believe me, your husband is aware and I’m sure it bothers him greatly. I know how guilty I felt when even little things I used to be responsible for, were now too much for me. But unfortunately the transplant recovery takes all our personal focus and we become pretty ‘me’ centered for the first 2 months. Slowly, Dane will be able to pick up some normal activities.

With the new little bundle of joy arrival, I do want to caution you about visitors and exposures during the next few months when Dane will be extremely vulnerable to infections. Bacteria, viruses, molds and fungi will be the threats for the near future. Getting ill during the first 100 days or so can impact the potential for chronic GVHD issues as an aftermath.
Wish Dane a belated Happy B-day for me! And to both of you, a warm congratulations on the birth of your little grandson! June is an incredibly big month for you and your family with your anniversary, BMT odyssey, birthdays and BIRTH-days! The rest of the summer will be pretty anticlimactic! 😉 Enjoy ‘going home’…be it ever so humble, there’s no place like it. Air hugs to you both.

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Hi Lori!

Thanks for your positive energy and kind wishes!

We plan to be extremely careful with Dane’s exposure to any possible threats to his health. It’s a nice thing that it’s summer time and he can meet his new grandson out on the porch in the fresh air. Washing hands, surfaces and washing everything he comes in contact with on a regular basis is my mission.
I know he appreciates my role as caregiver and he will do even better when he gets home.

Hopefully just a few more days and we can start the next phase of recovery. His electrolytes were a little off yesterday so they want to get that stable for a couple days straight.

Despite all the stress and how worn out I feel, I remain grateful for every day.

Hope you have a great week!

Mary

katgob | @katgob | 1 day ago

Wonderful news! I hit day 84. Being home puts you into a routine. I am at a friend's house, and finally the non homeowner and I have created a bond. I have known them for 30years a piece, but an experience like this creates
a unique time. I also have been working from home and that is taking time. It is good to be busy.
Mary, I bet Dane is grateful to have you. Getting others to support will be helpful. For food, I am thinking it may be fun. What did Dane used to like? I know not eating out anywhere has been odd. I have been making my own food the last4 weeks.
Keep a journal of some sort if you have not. It is good to know daily successes and positive moments of love and gratitude.
I hope the numbers keep going up, so a release will happen soon. If it takes a bit longer, well the Dr team knows it is necessary. Much hope and hugs from 19 days and beyond.

myfablife | @myfablife | 1 day ago

Mary612, I am so very happy for your husband, I am just curious of your husbands age. I have AML w/mutation to but I was denied a BMT unfortunately so I am going to have to be on treatment, the BMT would have been my best treatment for my AML.
Best of luck and enjoy your new grand baby.

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