Diagnosis: Acute Myeloid Leukemia (AML). A Journey

Wednesday evening Dec 6, Dr. Loren came and had a difficult discussion with us. The first thing she said was that the most recent MRI showed that George has leukemia in the bones of his spine. That’s what was causing the back pain – the leukemia was expanding/swelling and push against the bone which caused pressure on his spinal cord. The second thing is that the leukemia has returned to his peripheral blood and the percentage of blasts is pretty substantial – 23% as of yesterday. Because of these two factors, she said she does not feel comfortable going ahead with the plan for a second bone marrow transplant. George has a lot of disease in his body and it would be too risky to do at this point and it would most certainly fail. She laid out two options for us to consider:

1) Stop any further treatment and go home and call in hospice. He would be able to pass away at home with his loved ones around him. He would have a few weeks to a month before departing this life.

2) Undergo a chemo regiment of Venetoclax and decitabine for 10 days. Then come home while his counts tank and the hope is that that will get him to a place where transplant may be possible. The odds of a second transplant being successful as a cure are 5-10%.

Dr. Loren explained that George’s body has been through so much, even if he doesn’t feel like it has. She said when she has this conversation with most people, they are exhausted, weak, over it and that option #1 seems like a welcome choice. The chemo treatment carries a high risk of infection (bacterial and fungal). Also, these chemo drugs have shown that they aren’t effective against George’s cancer, which Is why he was referred to the clinical trial. Although the chances of the chemo treatment giving George the second chance we have been praying for are bleak, I think George will choose that option because he said option #1 feels like giving up. Both Dr. Loren and I told him it is NOT giving up. He has been fighting this leukemia for two years! It is taking control of how you leave this earth. But, George will go where there is a glimmer of hope. He is like that. In every situation he’s been in the last two years, he has always looked for that shred of hope to grab a hold of. It has served him well and allowed him to have optimism and a bearable day-to-day existence.

So, this is where we are now. We cried last night and Dr. Loren cried with us. I think today, George will tell the team he is choosing the chemo option. I am taking Michael to see him on Friday and he will tell him the situation then. I think that is the part that hurts George so much…the thought of leaving Michael and how he will handle it. Also, after being in the hospital for so long…last time, 40 days, he has lost the last of any muscle mass he once had. He has a “fall risk” bracelet on his wrist and has to call for assistance if he wants to walk to the bathroom. When he came home from the hospital last time ( Nov 26) he fell coming into the house because his legs were so weak, when he lifted one to step up into the house, he wasn’t strong enough to support himself. It is heartbreaking to see my strong husband reduced to this weak shell of himself.