Zach’s Fight Against Myelofibrosis

Zach’s cancer journey so far…

In July of 2017 Zach was diagnosed with Polycythemia Vera (a rare blood cancer). This cancer causes your bone marrow to make too many red blood cells. These excess cells thicken the blood, slowing its flow, which may cause serious problems, such as blood clots. He had been getting phlebotomy every 2-4 months along with taking low dose aspirin every day the last 6 years for treatment.

In early 2022 Zach’s Oncologist informed him his spleen was slightly enlarged and that he’d follow up on it. Unfortunately, no follow up occurred. Thankfully, that Oncologist retired and Zach started seeing a new Oncologist in early 2023.

In April of 2023 Zach informed his new Oncologist that he was having abdominal discomfort and was concerned that it was his spleen. She ordered a CT scan for Zach and found his spleen was about 4x the size it should be and needed to be removed. This is due to the build up of red blood cells in the spleen. However, the Surgeon said his spleen was so large they had to start him on Hydroxyurea (a chemotherapy medication) to lower the blood cell count in order to shrink the spleen to be able to safely perform a splenectomy. Zach was at high risk for his spleen to rupture if he hit his abdomen against anything so he had to be very cautious.

Zach’s spleen being enlarged alerted his Oncologist for need to do a bone marrow biopsy. On May 3rd 2023 Zach was informed his PV had progressed to Myelofibrosis (a rare blood/bone marrow cancer). This cancer is an uncommon type of bone marrow cancer that disrupts your body's normal production of blood cells. Myelofibrosis causes extensive scarring in your bone marrow.

Throughout May and June Zach had many tests to ensure he’s healthy enough to have a bone marrow transplant. He passed all the tests and was approved for BMT by the VA. BMT through the VA would occur in Nashville so by recommendation of his Oncologist, we applied for the VA to cover his BMT at University of Nebraska/Nebraska Medicine. Our application was approved and Zach has been seeing an a BMT doctor at Nebraska every 2-3 months since July 2023.

Unfortunately, Zach didn’t react well to the Hydroxyurea medication. He began getting severe mouth sores and his red and white blood levels dropped below the normal range causing him to have an extremely weak immune system and become very fatigued. He was taken off the Hydroxyurea in June and about a month later was started on a new medication, Jakafi. Zach has been doing well on the Jakafi; his blood levels have finally moved back to the low side of normal range and his spleen has shrunk drastically.

The next steps…

Now that Zach’s spleen has shrunk his BMT doctor said Zach can move forward with bone marrow transplant. A search of the bone marrow registry has identified 2 potential perfect matches for Zach.

At Zach’s next appointment with his BMT doctor in May he plans to tell the doctor his ready to move forward. The doctor will obtain the potential donors samples for confirmation testing and reach out to them to make sure they’re still willing and able to donate. If they are, they’ll be put on hold for Zach on the registry and go through testing to ensure they’re healthy enough to donate. Whichever one of them is chosen for donation will go through the process of donating their bone marrow. While all this is occurring Zach will go through all his previous VA testing again at Nebraska to ensure he’s still healthy enough for transplant.

Once all of that is completed, Zach will be admitted to the hospital and go through conditioning treatment (a regimen of full intensity chemotherapy and radiation) to kill all his bone marrow. This could be a few days to about a week. Then Zach will have Transplant Day when he’ll receive the donor’s marrow through IV (much like a blood transfusion). He’ll remain in the hospital for close observation and to remain in a sterile environment for 2-3 weeks.

Once Zach is discharged from the hospital with a caregiver (me), he’ll have to remain in the Omaha area for about 2 months. During those months, Zach will have check ups with the doctor multiple times a week for continued close observation slowly decreasing in frequency until he’s released to return home.

Once Zach returns home, we’ll have to keep the house clean and as sterilized as possible for at least a few months. He may still require my assistance for a while. Zach will still be rebuilding his immune system for quite some time and will have to have all his childhood immunizations again starting at 4-6 months post-transplant. Zach eill not need to have a splenectomy after transplant (which is very good).

This journey was very unexpected for both of us as we didn’t realize his PV could progress to Myelofibrosis which can progress to Acute Myeloid Leukemia. We continue to keep a positive mindset for his future treatment and outcome, but it’s definitely been a stressful, emotional rollercoaster with added financial stress as well. Zach’s PV and MF have been determined to be service-related from his 6 year service in the Air Force with multiple deployments.

In June 2023 Zach stopped working due to his weak immune system and fatigue. Thankfully, since his cancer is service-related a few months after he stopped working he was approved for VA Disability. This has helped drastically so far as it not only helps us meet our monthly bills, but the VA also covers his medical care. However, we have a lot of upcoming expenses: transportation to/from Nebraska, long-term stay in Nebraska while also still paying bills at home, care for our dogs while we’re in Nebraska, cleaning/sterilization of our temporary housing in Nebraska and upon our return home, and I’m sure more I’ve not yet thought of. All while I’m unable to work for 3+ months to be with him while he’s in the hospital and care for him upon his discharge from the hospital.

We greatly appreciate any help and prayers you’re able to provide during this difficult journey! Thank you!!