Husband with AML facing a stem cell transplant

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

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.

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.

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

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

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

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💚😋

Mary just went back and read NorthWestern. I went to Moffitt/UAB.

Hi Mary! I remember how it felt to finally be home again after hospital life. So I’m sure you and Dane are both sensing relief to be on the other side of transplant now and enjoying the comforts of being back home together.

He has my empathy with the persistent issues following mucositis. I didn’t have excess mucous all the time but certain foods were triggers which then created difficulty in swallowing for a while. My dietician gave me a list of foods that were potential culprits and when I avoided those, such as milk, protein shakes, cheese, etc., it helped. I’m not home right now so I don’t have access to that list in my files. But here is a link to a list of foods from lunginstitute.com which can cause excess mucous to form. https://lunginstitute.com/foods-that-cause-and-kill-mucus/

I also learned a trick from one of my transplant nurses on how swallow pills! Potassium pills were the worst. But some pills you can’t crush so the trick is to not tip your head back when swallowing. We have a tendency to do that when we take meds.
To avoid choking, take a sip and swallow of water to make sure the path is wet.
This next step needs to be done in one smooth motion: Place the pill in the mouth on the tongue. If it’s an oblong pill put it in the long way facing the throat. Take a swig of water, then keeping the chin level to the floor (not tipped up!!) swallow the pill! They go down every time! Keeping the chin level with the floor keeps the throat open to better accommodate the pill.
I hope this helps Dane out with his pills but it may take a little time yet for the tissue to remodel in his throat. Small bites of food, of course and just sips.
I know this is frightening for him to feel as though he’s choking, especially if theres a laryngospasm.
Remaining calm and holding the breath for 5 seconds may treat it. Also when that happens if he can hold his breath and put both arms up over his head that tends to add to the relaxation of the larynx.
His BMT team may have more suggestions when he checks in with them today.
One note I’d like to offer. When he’s able to switch over from mag infusions to oral, he may want to ask his BMT pharmacist if he can take Magnesium Glycinate. It’s much easier tolerated by the gut and has a good absorption rate. My Mayo Pharm was on board with my switch. The mag citrate gave me surprises I didn’t need. LOL.

Wishing him (and you!) continued excellent progress post transplant. He is still considered a babe in the land of BMT. So recovery will be a slow, but steady gain daily. He may have days he feels like a crazy puppy, full of energy and vigor but then crash for 3 days. The first couple months can be a roller coaster but the highs and lows start leveling out. He’s doing great! And Mary, so are you. Being a caregiver is a huge labor of love.
Sending you both air hugs!! Enjoy your new little grand baby and good luck with the return to the clinic today for the followup.