← Return to My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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@loribmt

Hi @leilab1 At day 21 post transplant your son’s blood numbers most likely still pretty low as engraftment would have happened only recently. Once that takes place the newly planted cells start churning out healthy blood cells. The white blood cells may help bring about a more positive change. But it’s so important right now to keep up with the antibiotics, anti-fungal medications (AmBisome) to fight the yeast infection.

At this time, as you know, he is very vulnerable to infections whether bacterial, viral or fungal. I don’t meant to alarm you but when illnesses happen at this early stage in the transplant they can be difficult to treat and escalate quickly. That’s why his doctors are treating this aggressively. Neutropenic fevers are troublesome because often it’s really difficult to find a cause. So it’s imperative to arm your son with those strong broad spectrum antibiotics. Now that his doctors have found the culprit he should start improving.

Nausea was my best friend for quite some time too. I’m so sorry your son is having that side effect. It’s miserable. I was on 3 different meds and finally daily IV’s of a strong anti nausea. But the one that helped me the most was sublingual Zofran tablets. They dissolved immediately under my tongue and brought me enough relief to get a few bites down.

Anything he wants is on the table! (Unless he has a sugar restricted diet for the yeast infection ). It doesn’t have to be healthy as long as he gets calories in and if it contains protein all’s the better! I ate Lactaid Ice Cream. It’s delicious but lactose free so it didn’t cause any tummy issues. My husband would make me daily shakes with banana chunks or canned fruits, because no fresh fruits or veggies were allowed. The banana had to be disinfected on the outside before peeling. My husband would also toss in a teaspoon of ground flax seed (that he baked first to 160 degrees to kill bacteria)

I tried to eat some Activia yogurt daily though I could only get down about 2 spoons-full at a time. I ate Rice Crispy bars too. Actually it was my Mayo Dietician told me try those. Other things that may appeal to him are banana bread, apple sauce, cheese sticks (but no artisan cheeses. They must be pasteurized), granola cereal just to nibble on. I couldn’t stomach Ensure shakes nor could I stand the taste of the protein powders. My husband would sprinkle Carnation Instant breakfast into my shakes.

I’m 4 years post transplant now and feeling like nothing ever happened. So I want you and your son to know this is possible. At 21 days, it’s so early in the game that nothing I can say will have him believe me that he’ll feel better! But he will get past this one minute, 1 hour, 1 day at a time and then get his life back.

I want to share a story with you about a young woman (19 at the time) named Sky whom I mentored through her BMT. I think it will give you some hope.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Has your son ingrafted yet?

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Replies to "Hi @leilab1 At day 21 post transplant your son’s blood numbers most likely still pretty low..."

Hi Lori,
Thank you for sharing your valuable insight. His neutrophils were 30 on Thursday, August 24 but have more than doubled today Friday and are now at 70. It's a glimmer of hope and we continue our prayers for this upward trend. We will have the opportunity to see him this weekend but I'm preparing myself for the worst. Is there one thing that someone might have said to encourage you through that difficult time? I spend most of my days in tears for him.