Truckee youngster in need of bone marrow transplant
When Hugh and Denise Williams’ infant daughter developed a severe rash, she was referred to a dermatologist at University of California San Francisco Medical Center. The family ended up in the cancer clinic.
“We took her to a dermatologist for a rash and they put is in a room with a social worker. We walked out shocked and had no idea how this was going to affect the rest of our lives” said Hugh, a real estate broker and developer, at his home Friday. Denise is an accountant at Northstar-at-Tahoe.
The Williamses were told their daughter Jesse had Evan’s Syndrome, which isn’t cancer but a rare blood disease that destroys blood platelets. At three years old, she has already had 11 surgeries and tests requiring general anesthesia, which is risky in itself.
Evan’s Syndrome develops when a baby doesn’t shed all of the mother’s cells after birth.
“It’s not contagious, it’s not hereditary,” Hugh said. “It’s just pure bad luck.”
The Williamses are organizing a blood drive Friday, July 25, at Tahoe Forest Hospital Medical Building, not to stock the blood bank, but to look for a bone marrow donor for Jesse as she will most likely need a transplant. A simple blood test is all that is required at the drive. Should a match be found the donor is anesthetized and marrow is extracted from the back of the pelvic bone with a special needle and syringe. The donor’s body replaces the marrow within a few weeks.
Marrow drives are organized around the country by people like the Williamses, desperately hoping to find a match. In the meantime, the couple is trying to raise $2,300 to pay for the blood drive and lab tests.
“You could give blood in Truckee and be a match for someone anywhere in the world,” Hugh said. “It’s a chance to make a heroic gesture.”
Without a bone marrow transplant, Jesse’s chances of living are slim. With the procedure, her chances may be quite good, Hugh said.
It’s not the transplant that’s risky, but the weeklong chemotherapy and radiation treatment before-hand designed to kill off Jesse’s blood cells for the new marrow to replace. The treatments must be near deadly to be effective, and the disease is so rare, doctors are making educated guesses.
Jesse had a bone marrow transplant two years ago with her mother’s marrow. The transplant took, but the chemotherapy and radiation treatments didn’t kill off all her cells and the disease persists.
“It’s like having a carrot dangled in front of your face,” Hugh said. “If we knew it was fatal it would be different. People are always afraid to ask ‘How’s your daughter?’ It is alright to ask. I’m comfortable talking about it now. But the answer is always the same. We need your blood.”
In all her childhood photos Jesse is bright and bubbly, even when she had to be fed intravenously for eight months because she wouldn’t eat. Her crystal blue eyes are wise and inquisitive, and she’s an eager talker.
But her parents’ feelings of grief and anger have only recently given way to more positive feelings.
“Try listening to her cry all day and not coming out of the hospital room for six weeks, and see what that does to your body, mind and spirit,” Hugh said. “But there’s some silver lining to the torture. I used to stress out about if a subcrontactor would show up. I don’t stress about the little stuff now. It’s made us more understanding. It forces you to find compassion for your child, your mate and for all mankind. There’s no guilt or anger anymore, but there’s fear.”
While the Williamses hope and wait for a bone marrow match, Jesse’s being treated with about 10 different drugs, including chemotherapy and steroids that cause her face to swell, put a downy fuzz on her arms, and weaken her immune system. A simple cold could turn into fatal pneumonia for Jesse. Some of the drugs are given through a tube surgically implanted into a vein in her chest.
If a match is found and treatment is successful, Jesse could lead a happy normal life.
“It’s amazing how one day out of your life to donate bone marrow can change someone’s whole world and that of everyone around them,” Hugh said.
To help cover costs of the July blood drive, call Hugh Williams at 587-2275. Donations will made to the National Marrow Donor Registry.
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