Ariella’s story continued… On June 13, 2017 Ariella had her limb salvage surgery on her leg. This consisted of the orthopedic oncologist removing ~4″ of her tibia, the tumor along with it. Then a surgeon who specializes in limb lengthening and limb deformities placed an external fixator on her leg. The hope was that since broken bones heal themselves, her body would form new bone to fix the break. The external fixator helped the process along by actually moving the remaining bone down millimeters at a time to lessen the gap (there was a cut made at the top of the remaining bone so we were actually filling 2 gaps). This would allow Ariella to have her own bone rather than a cadaver bone or rod implant. And it worked! It took a long, long time (longer than I think the surgeon expected because he wasn’t used to dealing with patients on chemo) due to the chemo but once she was off the chemo the bone formed more quickly. Following a (very painful) bone graft in May 2018 Ariella finally had the fixator removed on June 6, 2018 (she had it for 51 weeks). She went to a full leg cast for a couple of weeks, then a boot for several weeks and now has nothing on her leg and walking without a mobility device and even dancing! She was in PT 2-3 times per week that entire time and continues to go to PT to build up her strength and range of motion. The leg has come a very long way though.
While in the hospital recovering from surgery Ariella developed a fever which ended up being an infection in her central line. The central line had to be removed, and then replaced, again puncturing her lung again requiring a chest tube. She was devastated when she realized she would need a chest tube again. She spent much of that summer in the hospital and chemo was delayed, but she did get back on track. However she had 11 rounds to go of mostly the same protocol and her body was taking longer to recover, leading to delays between rounds. She required multiple blood and platelet transfusions and we never knew when she would be admitted for chemo. It was a long road but there was an end in sight. Somehow we made it to the end of treatment with a couple fevers and ER visits in between but nothing too significant. Ariella rang the end of treatment bell in December when scans showed NED, she had her central line removed in January 2018 and she went back to school. I wish I could say this was the end of her journey, but those who follow her page know this is not the case. We had less than 6 months of “normalcy” before our world was rocked again.
I will always wonder, what if they had amputated her leg instead? Would that have gotten rid of all the little microcells and thus prevented relapse? The margins were clean after surgery but still I wonder.
Also to add to the story, the pathology report of the tumor wasn’t what we wanted. It was only 65% necrotic (you want greater than 95%) but there was nothing they do to change the first treatment plan even though the chemo wasn’t doing the job. Had I known more I would have pushed for some kind of maintenance or consulted with another doctor after she finished that treatment. Maybe they would have said the same, there’s nothing to do. Maybe not. But of course I What If that to death. It didn’t make sense. She should have had the best prognosis based on her age, tumor location, that it was localized, and that she was a girl. But statistics mean nothing when it comes to cancer.
I know how hard it is for you to re-live all of what happened through Ariella’s treatment but it will educate many about the realities of cancer for young children and young adults. The bravery they exhibit is remarkable and humbling. I feel for all of them and continue to hope that new treatments that are much more effective and less toxic for children will be discovered. It is all unfair and terrible for children and their families. The “what ifs” can kill us if we let them. All of us did the best we could with the information we had at the time.