On October 3, 2019, our lives changed so suddenly. Our daughter Ariyana, at nine years old, had been complaining of leg and arm pain and weakness. We didn’t think much of it as she was a cheerleader practicing four times a week and would run twice a week for Girls on the Run. With that, we thought she pulled muscles. Then she started to get a headache, and that’s when we got really concerned. After running some labs, her pediatrician told us that we needed to take her to Comers Hospital immediately. After arriving, speaking with the E.R. doctor, and completing some lab tests, we were told that our daughter had leukemia.
She was immediately admitted into the hospital, and her first procedure was to be done within a matter of hours from the initial diagnosis. She was diagnosed four days before her 10th birthday.
She went through the induction phase and responded well to treatment. She was then reassessed and determined to be standard risk b-cell. She went through phase two, which was consolidation. This phase was more intense on her and caused her to lose some of her hair and make her sick, and not want to eat. Phase three was interim maintenance one. She tolerated the interim maintenance one pretty well overall.
Phase four was delayed intensification. This phase was rough. It caused her to lose her hair completely, to get really sick, endure hospital stays, and made her really tired. When this phase was over, she had to stay in the hospital a couple of different times from being so sick.
Phase five was interim maintenance two. Through this phase, she did well. However, it was the very last dose of chemo where her liver and kidneys did not tolerate the treatment. She ended up with mucositis, high bilirubin, and liver and kidney numbers elevated. This caused about a week’s stay in the hospital. She had to have heavy pain medication and couldn’t receive chemo until her numbers went back to normal.
Phase six is maintenance. Maintenance is the longest of all phases. It lasts about 18 months. Chemo is given daily at home, and every few weeks, she goes for lab checks and lumbar punctures with chemo injected into her spine.
Chemo kept causing her bilirubin to go high, which caused a huge gallstone. She had to have her gallbladder removed. Since the beginning of maintenance, she has struggled to find the right balance between chemo and her bilirubin and liver numbers to stay normal.
She is currently in maintenance and has had 17 lumbar punctures with chemo injected into her spine, three bone marrow biopsies, multiple stays at the hospital, lost hair three times (currently losing hair again), and a few different infections and countless rounds of chemo.
Foundations and organizations like Dragonfly help kids like my daughter feel like a kid again. When things are rough, and she’s not feeling well and can’t have interaction with her friends, the sudden packages, postcards, emails, or texts from these foundations brighten up her day. Dragonfly helped provide my children, Ariyana and my 2-year-old son, with a Christmas when things were tight financially for us. They helped make sure that they had gifts under the tree. We are so very thankful for foundations and organizations at a time like this, and hope to one day be a part of one to help give to other families.
