Support Alex Stein's Fight Against Leukemia & PML

Dear Friends-

Many of you have been following along with Alex’s journey, whether in person or virtually, over these past three years. It’s been a long road of suffering that no one but Alex can fully comprehend. Even though he’s been told that he was about to die three times (as have those of us who receive updates from his doctors,) he is miraculously still here and as sharp, loving and loyal as ever. We are here on his behalf with an update and a plea for assistance.

When he was first diagnosed in April of 2021, no one knew how many twists and turns this health saga would present him with. Alex has fought hard and persevered, and even his doctors have been amazed by his resilience and miraculous recoveries against seemingly impossible odds. All along he has done this with the goal of being on this earth as long as he can for his children- Thea, Sadie, Bucky and Pascal. Please help give him a little more time with them, and all of his loved ones, without the added stress of constantly worrying about finances.

With gratitude,

Tess Champoux

Pia Marrella

Catherine Klebl

How We Got Here, 2021-2022:

Shortly after picking up friends from the airport in April of 2021, Alex suddenly became very ill and was driven to a small emergency room in Portland. The doctor at the ER told Alex that he needed the resources of a larger hospital and should call his family and loved ones because he believed Alex would not survive the night. He did battle through, and after a few days of emergency interventions and testing at Providence St. Vincent Medical Center, Alex was diagnosed with a particularly aggressive and difficult to treat form of Acute Lymphoblastic Leukemia (ALL), called Philadelphia chromosome-positive ALL (Phi+ ALL).

Alex was placed in a medically induced coma for a month where, at times, he was receiving 3-4 blood transfusions per day. Upon awakening, Alex learned that the only way for him to be cured of Phi+ ALL was to have an allogenic bone-marrow transplant (ALLO-BMT). The outcomes of ALL patients receiving ALLO-BMT were encouraging- almost 70% are alive and in remission after five years, at which time the recipient is considered cured. However, from the beginning, Alex’s leukemia proved unusually aggressive and difficult to treat, even for Phi+ ALL. ALLO-BMT is much more successful when the recipient patient is in complete remission (a state termed minimal residual disease negative or MRD-) and newer chemotherapy drugs are used with success to get ALL patients into remission for transplant. Unfortunately, Alex’s leukemia quickly mutated and developed resistance to the first- and second-line chemo drugs. Even when he was treated with the last remaining effective drug, Alex and his doctors were unable to get him MRD- for transplant. The best they could do was to get him to low, barely detectable levels of cancer, and Alex was nonetheless scheduled for transplant in December of 2021.

A bone marrow transplant is a complicated and difficult process, though it has been simplified by the advent of stem cell transplantation. Alex’s oncologists believed the outcome for him would be significantly better with a whole marrow transplant instead of the stem cells from blood. The first step in preparing Alex for transplant was to identify the best donor for him by looking at a matched genetic footprint, first from his brother and sister and then, after neither was a perfect match, from individuals in the worldwide bone marrow donor registry. Once a donor was found, Alex’s immune system was wiped clean by a combination of total body irradiation and potent chemotherapy. Next, a portion of bone marrow from the donor was surgically removed and transported as quickly as possible (all the way from Poland, Alex later learned) to be introduced intravenously into Alex's body. The success or failure of an allogenic bone marrow transplant is heavily influenced by the genetics of the donor and the recipient. There is always a chance that the donor’s bone marrow could reject the tissue of the host, a phenomenon known as graft versus host disease, which can be painful and sometimes deadly (stay tuned, this unfortunately comes up later.)

Post-transplant, Alex spent months in isolation at the hospital and then at his house in Portland, as his immune system couldn’t yet fight off germs and even the common cold would have been deadly. He had to regain his strength little by little, re-learning how to balance and walk without falling. 2022 was a year of progress and setbacks, but remarkably his ALL continued to stay in remission through a continuing regimen of oral chemotherapy. During this time Alex did develop graft vs. host disease in his lung tissue, which caused several serious bouts of pneumonia. In trying to get this under control, he was put on steroids. This helped clear up his lungs, but eventually led to yet another health complication.

More Recent Developments, 2023-Present:

In early 2023, Alex started to develop some unusual new symptoms: weakness in his left hand and leg, falling frequently, feeling like he couldn’t get his thoughts organized. In February of 2023 he was hospitalized again after being unable to get himself out of bed, and having problems forming coherent sentences. It was initially thought he had experienced a stroke, but after multiple scans it was determined that he had developed Progressive Multifocal Leukoencephalopathy (PML.) PML is a rare and potentially fatal viral infection that damages the brain's white matter. It's caused by the JC virus, also known as human polyomavirus 2, which most people are infected with by age 10. However, the virus usually remains dormant and doesn't cause symptoms unless the immune system is weakened. This can happen due to disorders like leukemia, or by taking certain medications, such as those used to treat cancer, autoimmune disorders, or prevent organ transplant rejection. Alex’s oncology team made treatment adjustments to halt the progression of the PML, and he subsequently underwent months of physical therapy inventions to get back some of the use of his left arm and leg.

Alex's scan, white areas indicate affected/dead brain matter.

Since then Alex has been doing his best to live independently at home, cobbling together care as best he can during those times when he was most disabled. Family and friends have pitched in to help with home care when they can, but Alex has been primarily on his own to deal with everything this past year. As we all know, professional home health care is insanely expensive. Taking care of an aging house is expensive. The price of everything has skyrocketed, and living on a disability check has made every month an exercise in prioritizing bills and basic needs.

Then a few months ago, Alex suddenly began losing vision in his right eye, which rapidly resulted in blindness, and his left side function in both his arm and leg deteriorated significantly again. He was hospitalized and put through more tests, which determined that though his blood has been consistently clear of signs of ALL over the past year+, he now has leukemic cells in his Central Nervous System. The optic nerve in his right eye has been damaged, and he will not be able to regain vision in it. On top of this, his chemo has caused painful neuropathy in his hands and feet.

This news has significant impact on Alex’s long-term outlook. While there are options for treating this type of CNS cancer, Alex’s condition is already compromised to the point that radiation and/or chemotherapy would likely kill him. His doctors have recommended against any treatment unless/until he can regain his strength significantly.

What this means for Alex is he’s been discharged from the hospital into a nursing care facility. He has been getting physical and occupational therapy for a few weeks, with the goal of getting him strong enough to commence treatment again. Unfortunately, his insurance will not cover his stay at the nursing home past this current week, so whether he is physically ready or not he is getting discharged to his home. Much as he hates to admit this reality, he desperately needs to have reliable and constant home care to live safely there while he continues to get his strength back.

We’ve come together as friends of Alex, to organize funds on his behalf that will allow him to hire strong and skilled home care workers during this time period. His health insurance will not cover the cost. We want him to be able to use this time to get stronger, and be with his loved ones, and regain some quality of life.