The Tale of Two Sisters: Search for a match
The following is the first installment of a two-part, first-person story about Valley Town Crier Reporter Roda Grubb and her sister, Phyl Hilenski from Florida, and their experience as a bone marrow donor and host. Said Grubb, “It seemed important to tell the story so anybody else facing this, or those who may know someone going through it, would understand what a bone marrow/stem cell transplant was all about. It is also to encourage anyone who can, under 60, to join the registry of ‘Be the Match.’ It’s painless – a little swab of the inside of your mouth – and you could save someone’s life. Just go to marrow.org to learn more.)
Receiving a phone call from my younger (57) sister, Phyl, was nothing new. We always talked throughout the week. But there was something wrong — I could hear it in her voice.
“I have Myelodysplastic Syndrome [MDS],” she said quietly. “It’s a pre-leukemia blood disease.”
Still stunned by the diagnosis, she didn’t quite know what it was all about and was finding it hard to grasp what was happening. There was so much to talk about and learn. She would have to have chemo and, if she could get a Bone Marrow Transplant (BMT), her chances were high to recover.
For the time being all I could do was hit the Internet, learn as much as I could, and help her in any way I could over the phone – she’s 1200 miles away in Gainesville, Fla.
One of the first key players besides her doctor, Dr. Maxim Norkin, was her Bone Marrow Transplant Coordinator Nicki Sanderfelt, the newest angel in our lives.
“When we know we’re going to bring somebody in for transplant, we set them up for evaluation – a three day process. They see a whole multi-disciplinary team to make sure they’re physically and mentally a good candidate for the process,” said Nicki. “Chemotherapy in itself can make things harder on a person.”
Phyl passed the tests. A BMT was one step closer.
Learning about this disease taught us she probably had gotten it from previous cancer treatments she had received over the years. Anger and frustration arose that the very thing that “cured” her before had been part of what had turned against her. We knew we couldn’t stay in those emotions so we turned our attention to learning about the Bone Marrow Transplant concept. Everything I’d ever heard was excruciatingly painful but that was years ago. What did it mean today?
Since I was the only other left of our six member family, I was the first to get tested.
Shipping my blood samples to the University of Florida’s Shands Hospital Bone Marrow Transplant Unit (UFSHBMTU), the testing began to find Phyl a donor. Prayers went up in abundance that I would be a match, at least good enough to help. The first of many long waiting periods for various tests over the following months began.
Phyl and I continued to work but there was never any doubt what was constantly at the top of our minds. Could we cure Phyl?
Searching the Internet, it seemed bone marrow/stem cell transplants are pretty common procedures these days. Is it dangerous? Painful? Life threatening? To the donor? To the recipient? So many questions.
Phyl, all four-foot ten-inches of her, put back on her boxing gloves and fighting attitude which had carried her through her last bouts with the disease which will not be named. Steeling herself, she began her chemotherapy, while still working — her amor, Chet, always supportive, preparing meals, rubbing her feet, caring.
On Thanksgiving morning, Phyl has a mild fever which progressed rapidly landing her in the hospital for two weeks — a result of having low white cells and nothing to fight off the infection — one of many curves thrown her way during the whole process. Petitions were again sent to the heavens and answered. The chemo was stopped. It was decided she had enough and her small body just couldn’t take any more. Returning to work, she kept up the fighting attitude and started training someone to temporarily replace her while she was out on leave for the transplant.
Dr. Maxim Norkin, Md., PhD, assistant professor, Shands Hospital, University of Florida and Phyl’s main doctor, began filling in some of the blanks.
“There are two types of bone marrow/stem cell transplants we use here,” Dr. Norkin explained. “One is autologous (auto=self) where we take the stem cells from the patient (these are the cells which produce all other cells in bone marrow), freeze them and then give the patient a very high dose of chemotherapy without damaging their bone marrow cells. These cells, saved from the damaging effect of the chemo, are then given back to the patient.
“The second type is allogeneic (allo=other) where stem cells are removed from another person who has been ‘matched’ to the patient – the ‘donor.’”
Reasons for using bone marrow/stem cell transplants are mixed.
“It’s used for a wide variety of diseases though mostly for hematological (blood) cancers. The most common non-cancerous condition we use a BMT for is aplastic anemia, a disease of the bone marrow where it stops producing normal cells and patients have low blood count. Sickle Cell and auto-immune diseases could also be treated with a bone marrow transplant,” Dr. Norkin said.
“The advantage of this procedure is that it can cure cancers which are not curable with any other treatments – chemotherapy, radiation or any other experimental treatments,” he said.
I’m a perfect match in all tissue types! We celebrate over the phone — hooping and hollering.
“Although historically allogeneic transplants were considered only for patients younger than 60, now we don’t have an age cut off. Because of the progress in donor research over the years we now don’t have any age limits. We recently had a patient who is 75 and successfully received an allogeneic transplant,” Dr. Norkin said. “We can find a donor for almost any patient even though the chance of a sibling perfect match is only 25 percent because now we can do transplants from parents and children.”
We felt lucky and very grateful for our match.
Not only do they look for the “perfect” match, they are also able to use half matches — Haplo — meaning half. The trouble from donors comes when a disease – Graft versus Host Disease (GVHD) — rears it’s ugly head. This is one of the major side effects of the transplant. Phyl described it in simple terms.
“Your stem cells are trying to make a new home in me and find a problem. They don’t like something they encounter and they act up, causing a problem — Graft (Roda) vs Host (Phyl) Disease.”
See Part 2 which will detail Roda undergoing the collection of her bone marrow cells and her sister’s transplant procedure.