Today is the first day of Childhood Cancer Awareness Month. Three years ago, we had no idea that this was a thing. I am Kristy Westrom, co-founder of 2 Of A Kind Earrings, and I have a seven-year-old son who has been fighting T-cell Acute Lymphoblastic Leukemia since May of 2018.
It was a Thursday morning. We had a busy day planned with a doctor’s appointment, going to the gym, meeting friends for lunch, a play date, and swimming lessons. It was a regular well check appointment. I assured Liam that he wouldn’t be getting any shots that day because they were already taken care of the previous year.
As the doctor was finishing up the appointment, I brought up a concern that he seemed to be bruising easily. She looked at him and thought he looked kind of pale, so she ordered labs. So much for “no shots.” Our daughter, Isla, was one-year-old at the time and accompanied us to the appointment. After having to change her diaper, we went back to labs and they called him back and got started right away on a blood draw. Little did I know that this awful moment of having to hold one child down to draw blood while my other child watched would only be the beginning.
We were sent back to the exam room to talk to the doctor. Stan, my husband, texted me to check in about his appointment. I told him they were checking his blood levels and I’d update him when we knew more. The doctor came in, told us that he appears to be anemic because his hemoglobin is really low and that she’d be back with the rest of the results soon. I updated Stan, he asked if he needed to be there, I told him that it wasn’t necessary... it’s “just anemia.” Easy fix, right?
The doctor came back again and explained that his platelets also appear to be really low. At this point I’m wondering what we can do to fix that. As I’m about to ask, she went on to say that his white blood cells are extremely high and that she needed to send us to Children’s to run more tests. In that exact moment, I knew what she was telling me.
If you’ve ever had a panic attack with hyperventilation, you can imagine this with me. I was shaking, I was sobbing, I felt dizzy and nauseated, I couldn’t see clearly, and I could’t breathe. The doctor asked if it was ok for the nurses to take the kids from the room, and I somehow responded with a yes. I called Stan, and I have no idea how he was able to understand me. I’m pretty sure the doctor talked to him and told him the details, but I truly don’t remember.
As soon as Stan got to the clinic, we got all the details, and a call had been made to Children’s informing them that we were on our way. I don’t remember driving home, but we ran home to grab a few things and dropped off Isla with family.
That entire day is a blur, yet there are so many random details I remember. I remember the pediatrician hugging me and telling me that the doctors at Children’s are amazing. I remember her telling Liam that his mommy and daddy might be sad, but that he is going to become such a strong boy. I remember the nurses popping in our room to give us print outs and I could see how puffy their eyes were from crying. I remember leaving the exam room to walk to the lobby and hearing all the staff sniffling with tears in their eyes as well.
The first ten months of treatment were unbelievably difficult. Liam was constantly in clinic or inpatient at the hospital. His immune system was often dangerously low, causing him to have to be medically isolated at home while missing school and not seeing family or friends. He lost weight, stopped growing, lost his hair twice, received countless chemo infusions, over 20 blood product transfusions, and had nearly 30 days of inpatient stays. To say this experience changed our lives is an understatement.
In February of 2019, Liam started a phase of treatment called Long Term Maintenance. This meant that his frequency of chemo infusions would decrease and the really nasty chemos were behind us. Since then, he has been taking daily oral chemos, going in for chemo and antibiotic infusions every four weeks, and having periodic spinal taps with intrathecal chemo. He also has a steroid pulse every four weeks. His hair continues to thin, but he hasn't lost it again. His immune system remains suppressed due to the daily chemo and he still has a porta-cath implanted in his chest.
Despite his continued treatment and the craziness that is the pandemic, he is such a happy and active kid. He is going into second grade, loves to read, plays hockey and baseball, and is a pretty amazing Master Builder (Lego).
As time has passed, it has become easier to tell our story. Yet, I still have tears in my eyes as I write this. This journey is hard. It has been so important to find the positive aspects to focus our energy. We live every single to the fullest because we know how quickly and unexpectedly it can all be taken away. We also find ways to give back to this community. Our business, 2 Of A Kind, started from the idea of raising money for pediatric cancer research. We are so thankful for the love and support we have received. We look forward to continuing to make a difference.