Please Help Scott Outrun Cancer

Hello,

Let me tell you about my brother Scott. He’s been struggling with multiple health issues for decades and is now facing cancer. Unlike most victims of the disease, he has an opportunity to beat it before it even takes hold, but he needs help.

A Long Struggle

Over twenty years ago, Scott was diagnosed with rheumatoid arthritis, an autoimmune disease. You may know that this systemic affliction causes inflammation, tenderness, and stiffness of the joints throughout the body. Over the years, he’s collaborated with rheumatologists to control the pain. One of his hips was destroyed by the disease, and his constant pain led to an early retirement. With hip replacement, rehabilitation, RA drugs, and exercise, he was able to live a good life. When feeling well enough, he loved fishing, bowling, and playing frisbee golf.

Starting about eight years ago, however, he began to experience intense digestive problems. Our family learned that the chronic inflammation that affects joints in RA can also affect the gastro-intestinal system. After months of discomfort and the inability to eat without distress, Scott was diagnosed with Barrett’s Esophagus, a condition that occurs when the lining of the esophagus is damaged by inflammation and stomach acid. Scott found out that it’s important to treat the inflamed cells of the esophagus to avoid their turning cancerous. So, since 2018, he has had seventeen procedures to address the problem, including radiofrequency ablation, stripping, and cryosurgery of the esophagus. The GI team at the Mayo Clinic has helped him live with this difficult problem.

2024 Shock

At the beginning of this year, Scott was hoping that his health problems were under better control. Life held the promise of a happy future, because he had reconnected with his old love, Cheryl. It was one of those situations where they both wondered why they had separated thirty years before and were thrilled to be reunited.

Then, he began to experience a range of frightening symptoms: extreme weight loss, fever, profound fatigue, coughing, inability to breathe, and excruciating pain that drugs could not touch. He was checked into the hospital four times from March to May. At one point, he was diagnosed with diverticulitis, inflammation and infection of tiny pouches in the large intestine. It turns out that victims of rheumatoid arthritis are also at much greater risk for this painful condition, which makes it exceedingly difficult to find foods that don’t make the discomfort worse.

However, something else was also going on within his tired, emaciated body. The doctors determined that his spleen was badly swollen and affecting his ability to breathe. After weeks of more suffering, tests, and uncertainty, he was diagnosed with autoimmune myelofibrosis. My heart broke when I witnessed him being given this upsetting, confusing news on his birthday, of all days.

It turns out that rheumatoid arthritis can sometimes cause myelofibrosis, which occurs when the immune system attacks the body’s connective tissues and disrupts how cells function in the bone marrow. Our closeknit family was extremely upset to learn that myelofibrosis can be a precursor to acute myeloid leukemia (AML). Specialists have now determined that Scott has 12 to 18 months to receive a bone marrow transplant to stave off leukemia.

~ Our Family ~ Scott is in the first row-2nd from the far right wearing tan pants.

Hope through Isolation

Scott’s other siblings and I were immediately evaluated to see if we were a bone marrow match for him (our 96-year-old mother was willing but deemed too old!) but turned out to be only 50% matches. Happily, the Froedtert Hospital in Milwaukee was able to find 100% matches in a national registry. That was great news! We’ve now been told that, after extensive testing and preparation, Scott will be admitted to the hospital at the end of July and undergo chemotherapy to suppress his immune system and prepare his bone marrow.

That conditioning process may result in all the harrowing side effects we typically associate with chemo. After getting through that, he’ll receive the stem cells harvested from the bone marrow of his donor. He will stay in the hospital in isolation for a full month after the procedure, regaining his strength and receiving physical and occupational therapy.

Challenges After the Transplant

A 2020 study from Milliman, a leading consulting firm in employee benefits and healthcare, found that the average cost of a bone marrow transplant for the first 180 days post-transplantation was $1,071,700. That’s a scary figure. Fortunately, Scott has insurance that will cover significant costs, but we are challenged by others.

After about a month in the hospital, Scott will move to Kathy’s House, a guest house near Froedtert, where he’ll have a suite appropriate to a patient who’s immunocompromised. Our family is relieved that Kathy’s House is there to help and that the cost to stay is reasonable. The difficulty is that Scott must be there for two whole months, and it’s a requirement that he has someone with him 24/7 to ensure that nothing goes wrong, that he does not catch any illness, no matter how minor, and that he’s managing his numerous medications well.

Our family is working out a plan to provide around-the-clock coverage for Scott during his two-month stay at Kathy’s House, but we need to bolster the number of people who take shifts by hiring aids. And we would like to be able to cover the costs of family members traveling long miles to assist. Also, when he finally returns home, he will need nurse visits two to three times per week for up to eight months.

If you can donate any amount to support Scott and help us ensure he gets the care he requires, we will be forever thankful. His hope is to come out the other side of this ordeal and be able to enjoy his remaining years with Cheryl at his side.