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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Good morning Lori,
Today is day 18! We are getting close to a discharge conversation. His counts are up nicely and the team tells us he is 4 days ahead of the average person in that way. The counts came up fast! He has lingering issues with his voice from the mucositis, and swelling in his feet and legs from the fluids. Weaning off the pain meds too.
He is mostly done with being in the hospital, his food choices, lack of a decent appetite, and wants his own bed and home environment. He’s also fatigued, and cranky. But grateful, so grateful.
We’ve endured the peaks and valleys of the SCT this past month, along with the birth of our new grandson a few days ago, and Dane’s original birthday yesterday. I’m straddling a lot at the moment between him and helping the new parents as I can.
We’ve pulled in reinforcements to support us.
It’s a lot. But again, staying grateful and taking each day as it comes. Can’t wait to get him home and onto the next phase of recovery. I expect I’ll be spending most of my creative thinking on what food combinations I can come up with to entice him. I recall you mentioning how your husband put small quantities of a variety of things in front of you so as not to overwhelm. It’s going to be a challenge, I can just feel it.
Onward!
Have a great day.
Mary
Replies to "Good morning Lori, Today is day 18! We are getting close to a discharge conversation. His..."
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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.