When Annie was three years old, she was diagnosed with Langerhans Cell Histiocytosis. She was experiencing pain in her leg, causing her to limp. After X-rays, an MRI, and then a bone biopsy, we finally had some answers. Although it wasn’t the answer we were hoping for, we were relieved there was a treatment plan. Annie would be going to Phoenix Children’s Hospital-East Valley and receiving chemotherapy treatment for an entire year. Chemo treatments were weekly for the first twelve weeks, and she was also on prednisone. Luckily the medicine was mild and had few side effects. She also received a port to help make infusions go a little bit smoother. After the first six weeks, Annie got her first pet scan (ideally, it would have been done before starting treatment, but a positive Covid test meant she couldn’t receive anesthesia for the scan).
We were bummed to find that her scans showed two other affected areas- one in her hip and one in her vertebrae. We were hoping that she could switch to a maintenance schedule where she would only receive chemo treatments every three weeks, but after discovering more LCH, the plan was to continue weekly chemo treatments for six more weeks. Her scans after six more weeks looked much improved, so she switched to receiving chemo every three weeks for the rest of the year. She had a modified prednisone schedule as well. As her year mark was approaching, we were all excited about the possibility of Annie being done with chemo! She was no longer in pain and could walk and run like before, so we knew things were much better.
Unfortunately, after a year of chemo, more LCH was found in her pubic bone. It was very small, so we were glad we caught it early, but sadly, chemo days were not over for sweet Annie girl. Her chemo was now going to be Clofarabine, which she would receive five days in a row every four weeks. These treatments were much longer infusions and had worse side effects. The plan was to do six rounds of this. So we geared up for six more months of this new chemo, but we were not prepared for the extreme side effects that came along with it. Each round was different in how the side effects presented themselves, but we began to learn what to expect and settled into a rhythm of these monthly, week-long chemo treatments.
After six months, Annie received the best news her scans were clear, and she could ring the chemo bell! She had looked forward to that day for so long and was beaming from ear to ear! There could not be a sweeter sound than hearing that bell ring loud and clear! Annie continues to be monitored every three months, and we stay hopeful that she continues to receive good news!
Written by: Erika Halls