Photo Credit: Pittsburgh Pirates
In the beginning of October 2021, Scarlett started to complain of leg pain. She would mention it every night and I ignored it thinking it was just growing pains. This went on for a week and I remember it being a Thursday when she was really struggling to get off the school bus. My husband and I both agreed that if her leg still hurt when she came home on Friday afternoon, we would have to take her to the pediatrician’s office. Unfortunately, we didn’t get that far. The school nurse actually called us that day and said that Scarlett was in a lot of pain at school. She was crying and asking us to pick her up. We took her to the pediatrician who concluded that her joint pain without trauma could be a sign of Lyme disease so he asked us to get blood work to confirm and we would go from there. We figured we would just get the blood work done, wait for the diagnoses of Lyme disease, and start some antibiotics to get this pain issue cleared up.
On Saturday, October 16, 2021 our lives changed forever. I woke up to my phone ringing. I saw a lot of missed calls and a text message from the pediatrician to call immediately. When I called, the doctor said that Scarlett’s blood work looked very concerning and they suspected that she has leukemia. We were to report to Children's Hospital immediately. He said pack for about a week. I remember my response being….. but what about the Lyme disease test? He said, she does not have Lyme disease, she has Leukemia. I ran around the house collecting things, crying. It didn’t feel real. She was in her room sitting on her bed playing with her brothers. They were going through their pile of fidgets. I just kept thinking this can’t be true, she’s fine.
And just like that, Scarlett and I were on our way to the hospital while my husband stayed home with the boys. We were told to go directly through the ER where they would be expecting us. We were whisked away immediately. They took more blood to confirm the initial diagnosis. It was just the two of us and Scarlett asked me what was wrong. Why was everyone so worried? Why was I crying? I looked at her and asked her, Scarlett, do you know what cancer is? She said isn’t that when you lose all your hair? I said yes, the doctors think you have cancer. She said, oh, okay. Well I feel okay. And I assured her she would be fine.
From there, everything went unbelievably fast. They confirmed the type of cancer that Monday: Pre B-cell ALL. Doctors immediately scheduled the procedure to insert her port that Tuesday and her first dose of chemo care shortly thereafter. Everything was happening so fast that we barely had time to process it all. We learned about lumbar punctures that she would need to check her spinal fluid, bone marrow biopsies, all the various types of chemotherapy, side effects, medications, experimental procedures, clinical trials... It was overwhelming. We were also told that any fever would bring her right back to the hospital since the chemo was there to suppress her immune system. Any fever of 100.4 degrees is an automatic trip to the ER to rule out neutropenic sepsis.
Treatment was broken down in different blocks. Some treatment blocks required week long scheduled hospital stays, while others were daily chemo injections. The treatment schedule was so rigorous at times, it seemed like we were almost living at Children’s for that entire first year. The daily chemo was one that could be done at home with a chemo certified nurse, but for our second round, we had to deal with the Covid 19 induced nursing shortage with no one available to do the 5 minute task. So we had to drive to Children’s every day during that treatment phase. Covid 19 ended up being another obstacle we would have to overcome.
Scarlett also ended up having a reaction to peg-asparagase, which is a chemo that was used a lot the first year. That drug was replaced with a series of 6 shots. So for every dose of peg-asparagase she was supposed to get during treatment she received 6 shots every other day in her thigh.
Another chemo, Vincrinstine, caused chemo-induced peripheral neuropathy which caused her feet to drop. After weeks of serial casting, she is now using leg braces and a walker to get around. We have finally reached the Maintenance block of Scarlett’s treatment, which is certainly a huge milestone in this extremely long process. She now has treatment days once a month and takes oral chemo pills every day, and her number of scheduled hospital visits has reduced dramatically.
Most of our time in 2021 was either spent at the hospital for the week long stays and daily treatments, or we reluctantly stayed inside the remainder of the time knowing that exposing Scarlett to a simple common cold could result in even more extended hospital stays. These conditions not only effected Scarlett, but also her two younger brothers. Their lives were also put on hold while we navigated the new norm of living with Leukemia. As the dust was starting to settle from our whirlwind introduction to Leukemia, we began to learn more about Lending Hearts through pamphlets at the hospital. An important aspect of the Lending Hearts program that drew us to them was their inclusion of all the family members. At a time when we were trying to provide a sense of normalcy to our two sons, Lending Hearts was catering amazing activities that involved the entire family. Our first outing with them was a Washington Wild Things baseball game and our sons were so excited to go. Even though Scarlett may not be as big of a baseball fan as her brothers, she still had a great time relaxing and socializing with others who are going through similar situations.
Scarlett has reached the “Maintenance” portion of her treatment and that means she only has treatments once a month. We were lucky that her treatments at Children’s Hospital fell on the first Friday of every month, because that’s when Lending Hearts provides a free lunch for everyone that is in treatment that day. Not only does Lending Hearts provide an opportunity to socialize and share experiences with others outside of the hospital, they also bring joy to those still attending their hospital appointments.
Lending Hearts has become a regular part of Scarlett’s leukemia journey and each Lending Hearts outing can certainly be considered an essential part of her treatment. Each outing lets Scarlett experience something new while allowing her and her brothers to enjoy their childhood that leukemia has tried to steal.