Husband with AML facing a stem cell transplant

Mary so very very happy/excited for your husband. I am 63 very good health but I have ckd, with a LTP that was done in 2020, they just felt it would be way to much on my organs especially a TP liver introducing some more foreign cells. I am so disappointed bc that is the best tx. for AML w/mutation.
Where did your husband have his TP, you may have said.
I am wishing him nothing but the best of health indefinitely to.
Mel💚😋

Thank you @katgob !

It’s day 22 and we are happy to be home 4 nights already. We go back to the clinic tomorrow for his weekly check up.
He only needed a magnesium infusion this week.
He is eating a little and I am definitely considering his old favorites, some of which are working and some others, not so much. Everything tastes different to him. Plus he is still dealing with some mucositis. The mouth sores are gone but he has a lot of extra secretions in his throat. We’ll get the doctor’s opinion on that tomorrow.
He is also trying to get a good walk in every day even when he doesn’t feel like it. So grateful for the warm summer breezes!

I’m so happy to hear you are doing so well, working, eating, bonding with your caregivers! You are a positive ray of sunshine and hope.

Thanks for reaching out with your support!

Mary

Hi @myfablife
Thank you for your kind wishes for our grandson.

My husband just turned 65 a couple weeks after the BMT. His doctor told him just last week that his age is the only thing not in his favor for enduring the transplant but because he is fit and in good health otherwise, that counteracts his age.

I am sorry to hear you were denied a transplant. I have been quite encouraged by all the positive outcomes for AML treatments that are not as toxic as treatments that used to be the standard of care. I wish you the very best outcomes indefinitely!

Mary

Hi Lori,
Thanks for the positive vibes on our discharge from the hospital.
We have been home 4 nights already. Day 22 today. Home health nurse has been here a couple times. He needed magnesium IV. All other labs are stable. Tomorrow we return to NW clinic for the first of the weekly visits with the Stem cell team.

Dane has lots of fatigue, as expected. But he is walking outside at least once a day for up to a mile. He had swelling in his legs from the IV fluids given in the hospital. That’s improving. Little appetite, but he is at least getting some real food in him at least 3 times a day. Protein shakes to supplement. One thing that is bothersome and I’m a little concerned about, is he is having swallowing issues especially with water. He coughs a lot every time he has to drink water or take pills (which is all the time). This seems to be lingering from the mucositis.
His throat anatomy was changed 5 years ago when he had surgery to remove tonsil cancer. He also had radiation to his throat and that left him with a lack of saliva and some difficulty swallowing. Ever since then he has had to take special care with having enough lubrication to get food down but he was managing really well before the transplant. It didn’t interfere in his life or ability to eat whatever he wanted to normally. Until now.
This is the top priority to discuss tomorrow with the team.

It’s hard to see him this way. I know the progress is slow - this is a marathon, is what everyone says. I guess I’m having a moment of reflection now that we are home. My fears creep in (and likely a little PTSD from 5 yrs ago and the difficulty of being treated for throat cancer) when I see how hard this ordeal has been on his body. And I’m just now starting to look beyond the transplant to what lays ahead for us.

I know we can’t live in fear of the future. But some days that’s easier said than done.

Your story, and so many others who’ve gone down this road, is such an inspiration.

Holding my head up with hope,

Mary

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.

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.

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

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.

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

Mary, that’s a perfect way to phrase this neutropenic stage of a new transplant patient…It will end up being just a blur!
Not everyone has the same reactions or let’s say dramatic symptoms during their transplant process. I think some of mine had to do with my previous months of intense chemotherapy for AML which may have set the stage for my mouth sores and nausea. My rebound time between that chemo and the transplant was short.
The fatigue, however, hits everyone. That’s just a given. Anytime our blood numbers drop that low there’s just no more ‘umph’ to give. 😉. But engraftment changes everything. When those new cells set up housekeeping and ‘git ta gittin’ it’s like coming out from the dark side of the moon! So Dane is doing fantastic and his team has his back. And YOU, Ms Mary, are keeping your cool and being a fabulous caregiver to your brave husband. You’re both going to get through this and have tales to tell!