This is a personal issue and it took me a long time to decide to add it to our experiences. But it is part of our lives and ultimately deserve to be part of our journey.
At the end of 2022, Elsa was diagnosed with two aggressive Non-Hodgkin’s Lymphoma cancers. One in the neck area and a large one is the spleen and stomach areas. We flew back to Florida for biopsies and because of the Holidays, had to wait to get into medical facilities. I flew back to Bangor in mid- January to pack up and drive 27 hours back to Florida.
Here chemotherapy started in January 2023 and by May 2023 it was clear that the treatment was not working. We were referred to Moffitt Cancer Center in Tampa, Florida, about a three hour drive from us on a good day.
At Moffitt, different chemo treatments were applied which somewhat took care of the neck area, but was unsuccessful in the spleen, stomach lining, and hipbone. Splenic radiation was started around July and and made her extremely sick. She had to quit after the fifth treatment. We were at crossroads as she had lost a lot of weight and experienced serious muscle atrophy. Elsa has been fighting this now for the better part of eight months.
CAR T-Cell therapy was the option left. In essence, your own white blood cells are harvested, lab engineered to fight your specific cancer, and then transferred back into your body to attack both the cancer and your existing immune system. This type of treatment was only approved less than a year before we arrived.
It took more than a month for approval – both from the insurance company and from the hospital to determine if Elsa was a strong candidate. Only 12 patients a month are admitted from all over America. She was accepted and finally received her cell transplant at the end of September. And then the waiting game started. Those patients are isolated as any virus or bacteria could nullify the treatment.
It was a success! At the end of October Elsa was released from hospital but still under outpatient care. We had to rent an apartment in Tampa for three months and stayed in hotels for more that a month collectively for this experience. It was all worth it. The prognosis was a 50% chance of survival in the first year and those were fair odds. As I pen this blog, it has been a year!
