“Her bloodwork is consistent with Leukemia” the six words that changed our lives forever.

In November 2020, in the middle of the covid pandemic, I brought my generally just not feeling well 6-year-old Joey to her pediatrician’s office. As my third child, I assumed maybe it was strep throat, and we would be on our way with some pink medicine and orders to hydrate and rest. We sat in the exam room when a doctor that was not our usual doctor came in, took one look at Joey and asked me “how long as she been like this?” And without waiting for my response she said, “we need you to get bloodwork done today, just to be safe…if it’s bad news you will hear from us in the morning.” Frustrated that I was going to have to go back into the waiting room, with an exhausted and cranky child, I begrudgingly agreed. We sat in the waiting room for nearly two hours (one of us waiting far more patiently than the other) and then we were called in where an incredibly patient phlebotomist worked exceptionally hard to get 7 vials of blood from an extremely anemic and dehydrated child.

We went home, not thinking much of it all, except that I didn’t have the antibiotics I expected her to get and all of this certainly meant we would be spending a quiet Thanksgiving at home with just the four of us. Joey had a great night sleep, and we were getting ready to tackle the day before Thanksgiving holiday food prep when my phone rang. Her pediatrician was on the other end of the phone, and he calmly told me there was something off with her bloodwork. She had been diagnosed with Lyme’s Disease that summer, so he explained he had a comparison from her bloodwork then and we needed to head to our local children’s hospital “just to be safe.”

Still assuming there was nothing exceptional wrong we took our time packing up a few things like cell phone chargers, her blanket and we stopped to get a donut on our way in the Emergency Department at our local children’s hospital. I walked to the check in desk, gave them her name and we were immediately brought back to a room. A nurse and the attending came in immediately and said they needed to draw blood again to repeat the tests that had already been done and we would go from there. We waited for almost five hours in that cold and sterile room. Joey had finally fallen asleep when the nurse came in an apologized for the wait, telling me that they were just waiting for infectious disease and oncology to both review her blood tests. Truth be told, even then, I didn’t have any idea what was going to happen. I texted a friend who said “I’ve never wanted it to be an infectious disease more in my life.”

Another hour or so went by and then a very quiet and awkward med student, along with a small army of other people, entered our tiny ED room. I stood up to greet them and before I could say anything she took my hand and said “her bloodwork is consistent with Leukemia.” Six words that haunt me to this day. As a first-time parent, over a decade before, every fever, upset stomach or off day made me worry–I had struggled with postpartum anxiety immensely with my first child and truly worried that every issue was catastrophic (I think many first-time parents can probably relate). But she was my third kid, she ate chicken nuggets off the floor for dinner some days and had been generally healthy her entire life. I asked her to repeat herself so many times and still couldn’t remember the diagnosis so I asked her to write it down–B-Cell ALL. She explained to me it was the “best” pediatric cancer to get, which I’ve got to tell you was little consolation in that moment, but is a fact I have learned to be so very true.

Joey was immediately brought up to the PICU where she received blood transfusions off and on for the next 24 hours. They had to stabilize her before we could even begin to talk about surgery to put in her port and a spinal tap to obtain enough spinal fluid to test for the specific genetic characteristics of her blood cancer. We were told that this would be our new normal for at least two years. Daily chemotherapy for over 24 months, chemotherapy in her port and frequent sedations and lumbar punctures where they would inject chemo directly into her spinal fluid. Limited social interactions, no school for the first 9 months. She learned the names of her chemotherapy meds instead of 1st grade science, and walked the halls of the oncology floor of our children’s hospital instead of her elementary school. Life was at a standstill, with no normalcy for my sassy little girl. Not able to see friends, play at playgrounds, or bring any small amount of joy or normalcy to her days that were filled with treatments.

Joey stopped eating about 4 months into treatment. She was almost 7-years-old and was down to 37 pounds. She became unable to take her oral chemotherapy and because I had mixed all of her favorite foods with her medications, she completely stopped eating. I made the difficult decision to schedule her for surgery to have a feeding tube inserted. Unfortunately, there were some very rare complications with her feeding tube surgery and the lining of her stomach ruptured resulting in another emergency surgery in which I nearly lost her. If you think the words “your child has cancer” are the worst words a parent can hear I can promise you that the words “there is nothing more we can do, we just have to wait and see” hit far harder.

Fortunately for all of us, Joey has been a fighter since the day she was born, and she miraculously made it through her second surgery with very few complications. She restarted her chemotherapy treatment, and in February 2023 she finished 800 days of treatment. 2+ years of chemotherapy for a child that wasn’t even 9-years-old.

Going through pediatric cancer, in the middle of a global pandemic, was a level of isolating I never could have imagine us experiencing. When we were invited to spend a week with other pediatric cancer families at a retreat in Maine I was reluctant to accept. Being a single-mom to three kids (now 16, 13 and 11) sometimes makes these sort of events difficult for us all. However, our Rett’s Roost family retreat in Maine was the first time our family got to sit with other families that were just like us. As a single-mom, pediatric cancer family events are often hard, because I’m often the only single-parent in the room making it difficult for me to connect with other families. There is a unique struggle that comes from being the only parent to make medical decisions, raise the healthy children, and take care of the financial toll it all takes. On this retreat, though, there were 4 other families that tackled pediatric cancer with only one primary parent. I found people that understand our journey better than I had ever before. The kids laughed, swam and connected with other kids in a safe space where they could be themselves. And while they were doing that I got to connect with other parents, didn’t have to worry about making a single meal, and got to take care of myself for the first time in years. Fast forward to May 2025 and Rett’s Roost again gave Joey a magical Maine adventure for her 11th birthday. She got to make a designer purse, stay in an amazing hotel, and wander beautiful Ogunquit Maine feeling pampered and loved. I am forever grateful someone suggested I look into Rett’s Roost, they have met our family exactly where we are at providing love and support in just the ways we need it-which is a gift you cannot manufacture.