Tom Hayes

My Leukemia Journey

For those of you who don’t know me, my entire 38-year teaching career was spent with 9-12 year olds. I’ve always relished the authenticity and passion of children; little did I know that the adversity I was about to experience would lead back to them.

Diagnosis, Treatment, and a Vision

In December of 2017, shortly after I retired, I was diagnosed with Acute Myeloid Leukemia (AML). It is one form of blood cancer. I spent 78 days in treatment at Swedish First Hill hospital with 5 rounds of “drip” chemo fighting this cancer. I was in remission by mid-January, and completed my final hospital stay in June. Throughout this time my cup was ‘half full’ and I always was looking for even the narrowest of paths forward. Family, Team Swedish, supporters, faith, music, water, walking, and belief in self steered my course. It was Michelle, my wife, who brought me through this journey. I don’t know how to express my gratitude to her total commitment in my recovery. My children, Erika and Kristin, were also fundamental in helping me navigate and heal.

man in hospital bed with family around him

Since teaching is so much of who I am, how could I not be drawn to a place finding cures for children who struggle with the same difficulties I had experienced? In April I felt well enough to start learning more about leukemia and discovered my form of leukemia mainly affects adults over 55 and children under 15. Seattle Children’s Hospital does such cutting-edge work with finding remarkable advancements for children’s blood cancers, I was extremely intrigued. Erika Kreger, at the Seattle Children’s Foundation, connected me with the High-Risk Leukemia program (HRL). As I was finishing treatment I toured Children’s and met with the lead doctor, Dr. Todd Cooper.” I knew this was the right effort to support! ,,,I heard a call to help these children and families who had come to the end of their rope.

Life’s most urgent and persistent question is, ‘What are you doing for others’.

Martin Luther King

Climb for a Cure, Fundraising, and a Celebration

There are two risk categories for children with Leukemia — “standard” and “high”. Children who respond to chemotherapy are considered “standard.” Children who don’t respond to normal chemo treatments or those who have relapsed are considered “high” risk. What follows is a stem cell transplant and efforts to return to remission that are experimental. The high-risk trials fund is for research to find therapies for children with nowhere else to turn.

In the summer of 2018, I built a fundraiser page for the HRL program and a strategy for raising money called ‘Climb for a Cure‘.

To celebrate my recovery and kickoff the fundraiser we had a party in the fall. During my time in and out of the hospital, my good friend Frank Halferty, had started and maintained a support network through Caringbridge.

Many of these supporters became donors for the fundraiser. I set a goal to raise $50,000 by the end of 2018 knowing that I had a chance to receive a hospital match for our fundraising efforts. After we reached our goal and were given the match we had raised over $100,000 with the help of over 200 generous contributors! I experience deep healing through helping others. To celebrate our shared efforts, I began planning the ‘Climb for a Cure’ hike up Sauk Mt. near Mt. Baker. In August of 2019 about 50 supporters joined this commemoration event. So much more lay ahead.

“Things work out best for those who make the best of how things work out.”

John Wooden

Relapse, Transplant, and Recovery

In the fall I started getting ominous reports from my frequent bone marrow biopsies. By summer I had relapsed and in the late summer I re-started chemo in preparation for a stem cell transplant. Once relapsed I would continue to relapse throughout my life and transplant greatly reduces that chance. It wasn’t long before the best stem cell donor-match was located in Poland and transplant occurred in December 2020 at Seattle Cancer Care Alliance (SCCA). Although there are no chemo treatments associated with transplant recovery, I still spent about the same amount of time in the hospital for transplant issues. Michelle and I stayed for a month in an AirBNB close to SCCA and University Hospital for convenience and in case of emergencies. This second period of healing has been far longer and more challenging. Transplant patients wrestle with “Graft Versus Host Disease (GVHD) because the original immune system is in a continuous struggle with the donor’s immune cells now part of my system. This struggle can manifest in many areas and initially my body reacted significantly in my upper GI tract. Part of the treatment was immunosuppressive drugs as well as high dose prednisone. The steroid really affected my sleep for months.

In the late spring of 2021, Frank suggested a golf fundraiser to continue the effort with Seattle Children’s HRL Trials Fund. ‘Swing for a Cure’ was held in the fall. Supporting these children and their families kept tugging at me. After experiencing a stem-cell transplant and knowing that most patients have had at least one, I am at a loss in using words to explain the traumatic life condition these families face. The chemo used in beating back the cancer is very hard on the organs of a growing child, especially the heart. Living through treatments (chemo, transplant, radiation, surgery) is one thing, but not knowing what long-term consequences lie ahead can create a never-ending PTSD like condition for caregiving parents.

“God grant me the serenity to accept things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Reinhold Niebuhr

GVHD, Swing for a Cure 2022, and For a Cure NW

In November, as I was finally off my immunosuppressive drugs, my kidneys convulsed and a form of GVHD showed up there. I gained 30 lbs. and lost 51 lbs. over the course of a month due to a kidney reaction. Prednisone was used again to stabilize my kidneys. I was also given diuretics to remove the weight gain from fluid. I showed, however, no evidence of leukemia!  A new immunosuppressant was started which eliminates all the B cells in my immune system. To help with this, I began immunotherapy as a system boost. Throughout the pandemic my condition made isolation a necessity since I had no or few antibodies. Although I had my 4 doses of vaccine they provided no real protection. In March I received an antibody injection for COVID. I am still at risk for all other infections, and I had lost all my original vaccinations during transplant. But my cup is half full and I will always follow the path forward.

During this time, planning for Swing for a Cure 2022 was underway. The planning team decided to expand our reach and form a foundation called For a Cure NW. It was decided not to limit our fundraising to just golf tournaments. Our foundation will fulfill its vision to provide funding for the HRL program by holding various “events” around the Northwest. Future activities may include events like: Ride, Run, Bowl, Dance, Read, or Hike for A Cure. Our goal is to become as diverse as possible in our outreach.

“The only thing worse than being blind is having sight but no vision.”

Helen Keller

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