Celebrating every moment

By Joan Darling

Fourteen years ago this month, my daughter Ali had the operation that would change our family's life forever. On Sept. 6, 1996, Ali had surgery to remove an "abcessed cyst" that turned out to be the tip of an iceberg of a tumor. Everyone, even her doctors, were shocked. She had been ridiculously healthy, having played four games in a select soccer tournament the weekend before. A week of tests later, it was determined that she had stage 3 group 3 alveolar rhabdomyosarcoma.

I honestly cannot remember the date of her last treatment, probably because the cancer journey never really ends, but I will never forget the date we started on that journey.

It's worth retelling what we went through that year, because it wasn't an easy year, by any means. Ali started off on what would have been the equivalent of the Intergroup Rhabdomyosarcoma Study Group (IRSG) IV standard protocol, which was VAC (vincristine, dactinomycin, cyclophosphamide) with high-dose C. She had a very hard time on that treatment, and within three rounds of chemo had lost 20 of her original 116 pounds, due to a week of only marginally controlled nausea followed by a week of severe mucusitis throughout her digestive tract, both of which greatly limited her ability to eat. As a result, she had to be put on TPN (total parenteral nutrition) to stabilize her weight.

The ideal treatment would have been second-look surgery to remove the remains of tumor after chemo reduced the bulk, but the surgeon in Omaha was still unwilling to operate even though only shreds remained. The tumor had been wrapped around nerves that controlled bladder and bowel, and he wasn't comfortable trying to remove it all without doing considerable damage to them. As a result, we looked for a second surgical opinion, and went to the Mayo Clinic. The surgeon there was very reassuring that he could remove the tumor completely, which he did with clean margins. In addition, we met Dr. Carola Arndt there, and we switched chemo treatments to VAdrC/IE (Vincristine, Adriamycin, Cyclophosphamide /Ifosfamide, Etoposide), the standard Ewing's protocol. Ali also started on high-dose glutamine to control mucusitis, and managed to start eating more.

The worst part of treatment was during concurrent radiation and chemo. Ali developed third-degree radiation burns, and had to be hospitalized for about a week. The pain was excruciating, and she needed a fentanyl patch plus PCA (patient-controlled analgesia) morphine to control it. I still don't know how she didn't get a massive infection at the time, but somehow she got through it. When her counts started to recover, so did her skin, and it grew back so quickly that I could almost SEE it grow back.

She's been cancer-free since the second-look surgery, which was on Christmas Eve, 1996. Ali says it was the worst Christmas EVER. Two visits from Santa Claus don't mean much to a bald 13-year-old girl stuck in a hospital bed who is only one-third of the way through a difficult yearlong treatment for a life-threatening disease. But in some ways, it wasn't all that bad. True, the family was staying in a room in the Ronald McDonald House in Rochester, Minn., rather than in our own home. But we learned what was really important that year. Not the presents, not the tree, not the cards. It was cherishing each day and celebrating the small triumphs of life, making the most of every moment we have.

---------------

Ali is in the middle of this photo shot at last month's Catalina Classic, with Sarcoma Alliance board member Marites Tullius on the left and Betsy Haas-Beckert on the right. The two nurse practitioners are wearing the red Ocean of Hope (O2H) T-shirts.