So here it is. The final chapter of Ariella’s story. This is going to make you uncomfortable and sad and scared and probably even horrified. It will make you angry. It will not only break your heart but will shatter it into tiny pieces. And that’s the point. Because this should not happen. This should not continue to happen. Childhood cancer is not the cute bald kids on St. Jude’s commercials. It’s brutal. It’s destruction and side effects and infection and hospital stays and feeling lousy and fear and anxiety and pain and trauma and devastation and heartbreak. It’s being poked and prodded, needlesticks, surgeries transfusions, dressing changes. It’s grueling and isolating and unfair and relentless with loss of privacy and dignity. Sure, Ariella smiled during treatment. She had some great times, we made sure of that. But she also screamed in pain that pain meds couldn’t touch. She carried a puke bucket with her all the time. She asked questions like, what if this treatment doesn’t work? She rarely made it through a full day of school. She had excruciating headaches. She was scared and lonely and missed out on so much. The treatment ravaged her body. And this was all before she ended up in the PICU.
Ariella’s story left off in the middle of relapse treatment, in September 2018. Ariella had started middle school and loved it. She was back to dancing and learning a tap solo. The first treatment protocol for relapse did not work. Meds were switched. All outpatient. Treatment this time around was not as disruptive. But the new meds required injections again to boost her counts. She turned 11 and had her birthday party at an indoor skydiving place. Fearless that kid was. We went to New York to see School of Rock with the Do it For the Love Foundation. She got to meet the cast and get a backstage tour! She took part in Hockey Fights Cancer and skated with Phoenix Copley and other Caps. She delivered tons of bears to local hospitals and respite houses. She was living her life, cancer be damned. She started radiation in November 2018. The goal was local control to get her NED (no evidence of disease) so she could get the bone marrow transplant. In the beginning of December we learned that the current chemo regiment also was not working. So once again we had to come up with a new plan. There was still an option but if this didn’t work… Rather than chemo it was Pazopanib which was a targeted therapy. When I had to tell her once again that the chemo wasn’t working but that there was another med we were going to try, she said “well at least I have options.” And the new med was much easier. It was an oral pill taken daily with fewer side effects though it turned her hair white which she loved and totally rocked. She continued with radiation and experienced horrible nausea throughout that treatment. But through it all she was thriving at school and continuing to kick ass on the dance floor. She finished with the radiation in January 2013 and we finally got the news we wanted. We couldn’t say she was cancer free because there was the strong likelihood that there were still micro-metastatic cells, but there was no new disease and no metabolic activity in any of her lesions. This was everything we hoped for. We could do the bone marrow transplant (a trial in sarcoma patients) and hopefully get rid of this disease once and for all. All of a sudden things were moving quickly with admission scheduled for the week of February 18 and transplant scheduled for the 26th. The timing sucked for Ariella. She was gearing up for dance competition season. Missing competing for 2 years Ariella was thrilled to be back at it. And she was working so hard. But we told her it would be worth it to miss one more season in order to be able to dance for years to come… She was fortunate in that a competition that was going to be held locally allowed late entries from her dance studio so Ariella got to perform in a couple of group dances and her tap solo. We never could have imagined it would have been her last time dancing. Ever. What if? What if the timing was different? What if we asked her doctors to delay until after competition season? What if, what if, what if?