13 Years Old at Diagnosis
My daughter, Delaney Goodner, was diagnosed with alveolar rhabdomyosarcoma, a rare childhood cancer, on June 10, 2008 when she was 13 years old. She went into Children’s Hospital on Friday, June 6, and they told us she had cancer but the type and plan wasn’t defined until Tuesday. I knew so little. Though I’d known adults with cancer, I never understood their treatment plans. During that time from Friday to Tuesday I somehow decided that it’d be about 4 months of treatment, a couple months of recovery, and she’d be fine by Christmas. Imagine my shock on Tuesday when they explained a 54 week treatment plan! But I get ahead of myself.
Delaney’s treatment over the first 6 months went very well. The tumor reduced to just a spectacle. We never saw what was coming…3.5 years of treatment and then Delaney leaving us. That was something we never believed would happen.
We learned a lot that first year. We questioned but then understood why we learned things throughout the year vs having them explained to us on day 1. Some of the reasons: 1) we could not have absorbed everything the first day, 2) every child is different, side effects are different, etc so the doctors don’t know how your child will be affected, 3) we would not have understood even if explained. The one major thing I remember learning is that a 54 week treatment plan does not equal 54 calendar weeks. If counts are too low the treatment must be moved out, if illness happens the treatment is delayed, etc. This was a hard one for me to absorb as I’m a planner and having the plan change was hard.
Delaney completed her 54 week treatment in July, 2009, and had scans in early August that were supposed to be clean. They were not. Surgery and chemo followed. Delaney finally had clean scans in December, 2009. She went on a maintenance trial to keep the cancer away. Though we’re told the trial proved effective for many, unfortunately it didn’t for Delaney and she had her first recurrence over Memorial Day, 2010. On Sunday of Memorial Day weekend our doctor replied to our email telling us to bring her to clinic on Tuesday. More surgery and chemo followed. She had clean schedule the end of October, and was good until February, 2011.
At school, on Friday, Feb 11, she felt a lump. She called & cried, but decided to stay at school. More surgery, more chemo. Clean scans in May. We were so optimistic that Delaney would beat this cancer.
Chemo ended in August and baseline scans were scheduled before starting the radiation treatment. I believe all our doctors were in shock when they saw Delaney’s scans. Delaney felt the best physically and emotionally than she had in a long time. Cancer was rampant.
Delaney made the decision to continue treatment. She told the doctors she’d do anything, just keep her alive. She made her bucket list. We tried 2 different trials…neither worked. She wasn’t ready to leave this earth yet, but also she didn’t want any other children to suffer.
We drove from Colorado to Nebraska over Thanksgiving to visit family. On the way home, after the Nebraska visit, Delaney asked me if that was her ‘goodbye’ to our relatives. We went to Children’s on Monday and she was admitted for pain control until Thursday.
Delaney was at home when she left us on Friday, 12/9. She was surrounded by family, friends, and her beloved animals.
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