Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Wednesday: George texted me this morning at 9:34 saying he was being transported down to IR (interventional radiology) and so I started getting myself ready to head up to the hospital to visit him. Normally, the biopsy takes around an hour and a half. It is now 1:20 and he’s still not back in the room. They must be backed up down there! Guess I will write this while I wait!

This week, George has been on a neutropenic diet because his white blood cell counts are low, but he has also been on a carb control diet because his blood sugar is still high from the steroids he is taking.

Needless to day, his dining options are limited! But he is managing ok. He has also been getting insulin injections with every meal and a long lasting dose at bedtime. He continues to get his finger pricked at every meal to test his blood sugar and an injection of insulin.

We got to see Dr. Loren this weekend. She was the attending physician. Even when George had his bone marrow transplant back in July 2022, we never saw her! So, it was great to touch base with her. She said she had planned for George to be admitted for transplant on Dec 7 if the results from the bone marrow biopsy are what we hope for, but she said that may be too soon. The donor is ready and standing by. Wouldn’t it be great if he could be home for Christmas and put everything off until January?

If the results aren’t favorable, she said we can look at another clinical trial, or chemo options and just saying “what the hell, let’s go forward with transplant” even if there are blasts is an option, too. It would be a high risk transplant if he goes forward with transplant without eradicating the blasts. I’m not sure if she meant high risk for relapse, or high risk for something going wrong during the process. We will be anxiously awaiting the results from the biopsy being done today.

So, some progress this week: George’s steroids were reduced from 3 times a day down to twice a day and yesterday, they reduced him down to one dose in the morning. That should help a lot of things! His ferritin is going down, which means his inflammation is going down. That’s why they feel comfortable reducing the steroids.

Thursday: Dr. Hirsch came in and discussed releasing George from the hospital! They are thinking Sunday or Monday. Ideally, they want him to be off the steroids before release. So today, they dropped his dosage from 10mg to 5mg to see how he does on the lower dose the next couple of days.

Today is Thanksgiving. Michael and I came up to celebrate with George. The Headstrong Foundation provided a nice home-made meal for the patients and their families. Such a wonderful group of people!

Friday – George is getting an infusion of cryo today. He got blood and platelets yesterday.

Dr. Hirsch came in today and said she dropped the steroid to 5 mg once a day and will monitor George over the next couple of days and….they plan to send him home on Sunday! Yay!!

Shortly after Dr. Hirsch left, a rep from the pharmacy delivered a bag with “diabetes” stuff so he can test his blood sugar at home. I guess I’m going to be donning the nurse hat again! Probably going to have to give him insulin injections. UGH.

Anything we have to do at home is so worth it. I’m decorating the house for Christmas and George will love the homey, festive vibe. He will love sleeping in his own bed, waking up and having HIS coffee in his own mug, relaxing in his recliner, which he has said he misses terribly! And he will be back at work in his home office, rather than at the make-shift set-up. in his room. We will have to drive out to Philadelphia for infusions a couple of times a week, most likely…but hey…we’ve done that before! George said “You don’t know what a morale boost it is to be getting out of here.”

We will, of course, be awaiting the results from his bone marrow biopsy and meeting with Dr. Loren to discuss the next steps for George in his fight against this despicable leukemia, but for now…we are just reveling in the fact that he is coming home. Can’t wait.