My Dad's Acute Myeloid Leukemia Journey

My Dad’s Journey.

At the age of 66 my Dad was diagnosed with Acute Myeloid Leukemia (AML) on April 7, 2023. He was immediately admitted into Mayo in Rochester. His first round of chemo put him into remission but also into heart failure which was not detected right away which created life threatening circumstances. This entailed numerous testing and scans and blood draws including an MRI and biopsy of his heart. His heart failure meant he was no longer an eligible candidate for the bone marrow transplant even though he was considered in remission status.

The heart failure took a long time to correct itself. Due to the heart failure they had to change up his chemo regiment. I stayed at Mayo in Rochester in my Dad’s hospital room for 13 days in June. Over the Summer he continued a different chemo regiment. Lots of testing, scans and blood draws and his heart function gradually improved. We were headed towards a bone marrow transplant, the ultimate goal.

His Brother Cliff and two Sisters Debbie and Diane got tested to see if they were a match for donating bone marrow. Cliff was 100% match. He donated over 3 million cells and they are currently frozen at Mayo for transplant. What a gift, the gift of life.

In September, his bone marrow transplant got delayed because we found that his AML had spread to lesions on his pelvic bone which resulted in a different chemo regiment and another 5 days of hospitalization at Mayo.

After more and more testing the end result was none of the chemo given was effective.

At this point we were told a clinical trial called CAR-T at Mayo would be the next step. We embraced it and moved forward like we always do. He went through a month of testing and preparation. CAR-T involved the donation of his own cells to be genetically mutated to fight the leukemia cells. We essentially set up shop in Rochester knowing we were going to be there for an unknown amount of time. 15 minutes before the CAR-T transfusion was supposed to take place we were told by the clinical trial doctor that his cells did not meet the safety requirements and the clinical trial was off.

After all of the chemo treatments and an unsuccessful CAR-T clinical trial we were told in November he had two options -end of life or a clinical trial at MD Anderson in Houston, Texas.

My Dad experienced his first plane ride with me to MD Anderson in Houston, Texas. We arrived November 28th and had massive testing done to get into this clinical trial which focuses on the Menin Inhibitor and the KMT2A genetic mutation. This clinical trial did not cover any airfare or lodging expenses. After a week and a half of testing and thousands of dollars spent on airfare and lodging, we were told that he was in remission and ready for a bone marrow transplant-the ultimate goal. We were sent back to Wisconsin to get ready for the transplant at Mayo.

In December, shortly after we arrived back to Wisconsin, he was in distress. We ended up at Mayo and found out he was not in remission and that AML was found in his spinal fluid. He also developed Bell’s Palsy December 17th. We spent over two weeks in the hospital over the holidays ending up in the ICU on Christmas Day. He received chemo for his AML in his spinal fluid and the chemo was a success for his spinal fluid. However, there was still AML in his bone marrow and in lesions on his pelvis.

Once he arrived back home from Mayo in Rochester he ended up back at Mayo in Eau Claire in early January and had fluid removed from his lungs. January 20th I brought my Dad into the ER at Mayo in Eau Claire and he ended up having a blood infection called Streptococcus that started in his picc line and traveled to his jaw which resulted in a tooth extraction and many different antibiotics. Any infection is life threatening due to not having an immune system. He was in the hospital for almost two weeks.

He had another bone marrow biopsy and multiple tests at Mayo in February and we found out his AML has now moved to his right humorous bone and left clavicle bone and remains in his bone marrow and lesions in his pelvis. The percentage of AML blasts in his bone marrow is higher now than it was upon diagnosis.

We were told two options-end of life or a clinical trial at MD Anderson in Houston. to Houston we went. He and I flew out on February 13th and went straight to ER at MD Anderson to be admitted. This was the scariest travel day of my life. He was not accepted into the first clinical trial due to his QTC of his heart. After being in the hospital almost two weeks, they recommended a different study which is not as invasive on his heart function nor has as straight of heart requirements to enter the trial. On February 28th we heard the best news, he was accepted into the new trial focusing on the genetic mutation he has of KMT2A. He started the trial on February 29th. This trial consists of three drugs-Venetoclax, Azacitidine and a drug called Ziftomenib and this last drug is not FDA approved yet.

I am creating this Go Fund Me on behalf of my Dad. This has been so taxing on everyone really involved in this journey emotionally, mentally, physically, and financially. The clinical trial at MD Anderson does not cover the cost of any travel nor lodging, and those expenses are expected to be significant. One cycle is 28 days long with a bone marrow biopsy at day 21. The trial requires him to be in-patient at the hospital for the first 14 days and then he will be discharged. It will be unknown as to how many cycles he will need and how long he will be in Houston. The clinical trial research nurse has seen a combined cycles last up to 100 days long cycle depending upon how the patient reacts to the trial medications.

If I can help raise funds for my Dad for travel expenses, lodging, ongoing medical bills and ongoing prescription drug co-pays for the numerous drugs involved, I will certainly give it my all.

My Dad has been a hard worker his whole life and the type to help anyone in need. He worked for a Lumber Company for over 30 years before retiring. He worked his whole career to earn a pension and that hard earned pension is being spent on the costs of travel and lodging that are not covered by the clinical trial, as well as medical bills and prescription drug co-pays, etc. to name a few. The road ahead will be a significant financial burden on my mom and dad, so the funds raised will go directly towards the costly expenses for travel, lodging, medical bills, and other expenses that are not covered.

My Dad really has been a fighter. He has encountered every setback imaginable. I am just so incredibly proud of how brave my Dad has been and am very grateful I can be by his side during his time of need, it is the greatest gift.

A huge thank you in advance.

Danielle Bogenschutz (Steve Bruley's Daughter)