April 05, 2016
How art helped my daughter cope with MDS treatment
BY Ashley D. Inselman
My oldest daughter, Josey, had had low platelet counts since she was born, but the doctors always said it was nothing serious. When Josey was 7 years old, though, I noticed her bruising from gymnastics had gotten much worse, and she was more tired than usual. So I had her blood counts checked again.
The bloodwork showed more abnormalities, so I pushed the doctors to figure out what was going on. After a bone marrow biopsy, we learned that Josey was missing part of chromosome 5, which could lead to acute myeloid leukemia (AML).
I called MD Anderson right away, and we traveled to Houston from our home in Perkins, Oklahoma, a few days later. After countless tests, we got a definitive diagnosis on April 29, 2014: myelodysplastic syndrome (MDS), a blood cancer that’s very rare in children.
A genetic predisposition to AML
As overwhelming as Josey’s diagnosis was, we were relieved to learn that it hadn’t progressed to AML yet.
But with that relief came another surprise. Through genetic testing, we learned why Josey, my husband, Mike, and our youngest daughter, Bristol, share a history of low platelet counts. They have a gene mutation that causes familial platelet disorder, which makes them more likely to develop AML. Mike’s father had recently died from chronic myelomonocytic leukemia, another form of MDS, which had progressed to AML.
At that point, both Mike and Bristol became patients at MD Anderson, returning every six months for monitoring so they can stay one step ahead of cancer. Although this means a lifetime of monitoring and worrying, we know we have to keep living our lives.
Josey’s bone marrow transplant
Because Bristol had low platelet counts, she wasn’t eligible to be Josey’s bone marrow donor. This was discouraging because sibling donors tend to work best, and Anna Franklin, M.D., Josey’s oncologist at MD Anderson Children’s Cancer Hospital, had said a bone marrow transplant was our only chance for a cure.
But our doctors found a perfectly matched, unrelated donor through Be The Match, the national bone marrow registry. To prepare her body for the transplant, Josey received high-dose chemotherapy. She then received her bone marrow transplant on Aug. 13, 2014.
Josey’s transplant day was the most nerve-wracking day of my life. It was almost 10 p.m. when we found out the marrow had arrived and was being processed. The transplant lasted hours into the night, with Josey’s nurse never leaving her side. By that point, Josey had been in the hospital 10 days, sicker than ever and confused about why she was being given so many medications that made her so sick.
Throughout her chemotherapy and until her new bone marrow started making its own cells, Josey was isolated to protect her immune system.
The two of us stayed in Houston for more than four months, while Mike and Bristol stayed in Oklahoma. It was hard on all of us to be separated for that long. In addition to being away from home and dealing with a transplant, Josey couldn’t eat fresh berries, honey and some of her other favorite foods for months. She also missed her entire second grade year.
Finding hope through art
During her first couple of weeks in the hospital, Josey didn’t speak to anyone. That changed when Lisa Sitz, the Children’s Cancer Hospital’s art teacher, walked into Josey’s room with yarn, paint and her art supply store on wheels. Josey’s face lit up. It brought tears to my eyes. Finally, Josey had found something to take her mind off the pain, vomiting, loneliness, seclusion, poking and prodding. And it gave me time to sort through my own thoughts.
Josey attended MD Anderson’s hospital school, but from that point on, art was the subject she got most excited about. She worked on the incredible river dragon statue created through MD Anderson’s Arts in Medicine Program, and attended the screening of PBS’ Arts in Medicine film “A Beautiful Remedy.”
She also drew horses for MD Anderson’s rodeo art contest and was honored at the Houston Livestock Show and Rodeo. After winning best of show last year, she could not wait to walk across the stage again when the rodeo honored her and other young artists – including Bristol -- last month. Josey had a big gymnastics meet at home that same day, but she didn’t think twice about going to Houston instead.
Though Josey has always been creative, I’ve loved watching her blossom into such an outgoing little artist. Now her plans at home regularly include art lessons and camps, and I know the inspiration, confidence and life she gained at MD Anderson deserve a lot of the credit for that.
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TopicsBlood Tests Acute Myeloid Leukemia Myelodysplastic Syndrome Childhood Cancer Issues Leukemia Diagnosis Hereditary Cancer Syndromes Biopsy Treatment Childhood Leukemia Stem Cell Transplantation Cellular Therapy Chemotherapy
Though Josey has always been creative, I’ve loved watching her blossom into such an outgoing little artist.
Ashley D. Inselman