It was April 15, 2016. I woke up that morning in Tokyo where I was on a business trip and ended the day meeting with a pediatric hematologist oncologist in the emergency room in Denver, Colorado with my husband Rich and our son. It seemed like a bad jetlag-induced dream.
With news reports of a bad snowstorm in Denver, I took an earlier flight to get home and was looking forward to a weekend with my family—Rich, 10-year old daughter Lainey, and 9-year old son Quade “Q”. On the plane, I didn’t once think about the bruising and swelling we had noticed on Quade’s legs and feet earlier that month. After all, he was an active 9-year old competing on a snowboarding team and playing competitive lacrosse, so bumps and bruises were commonplace. Soon after my husband picked me up from the airport, we received a call from the school nurse. Quade had visited her complaining of a swollen hand and a strange rash on his arms and legs. A trip to Quade’s pediatrician resulted in drawing blood for a complete blood count and, within a couple hours, we were asked to immediately go to the emergency room at Rocky Mountain Hospital for Children. The conversation that followed was numbing. Quade had very low red cells and platelets but elevated white cells. Further testing was required for diagnosis but the symptoms were indicative of leukemia.
Q kept asking to go home and burst into tears when the doctor said he would have to spend the night waiting for additional test results. He either didn’t know the meaning of leukemia or didn’t hear the doctor mention it, he was just concerned about missing his lacrosse game that next day, which was likely to be snowed out anyway. Throughout the night, I kept holding onto hope and praying that it would be something else—I just couldn’t accept leukemia. I convinced myself that our family had a hall pass on cancer because we had experienced so much loss to cancer already: my grandmother, my mother just eight weeks after Quade was born, my uncle, and my best friend from high school.
Within 24 hours, Quade went through a bone marrow biopsy, lumbar puncture, double testicular biopsy and the placement of a Broviac central catheter. As any parent can attest to, Rich and I felt all those pokes and pricks far differently than Q—not a physical pain but one in your gut. You tell yourself you are the parent and you have to be strong but your head is swimming, your mind racing and you try with all your might to hold back your own tears. The results came back with the diagnosis of Acute Myeloid Leukemia with monosomy 7. Three rounds of aggressive inpatient chemotherapy would be needed followed by a stem cell transplant. Q was concerned about spending one night in the hospital and suddenly we were faced with months of hospitalization. We were told Quade could die within 4-8 weeks without treatment and the statistics available on 5-year disease free survival for AML with monosomy 7 were far from optimistic in our opinions. This is the same kid who six weeks earlier had won the snowboard giant slalom for his age group. We were devastated.
I have worked in the medical device industry for most of my career. Coincidently, my first position held at my current employer, Terumo BCT, was within global product development and marketing for a new system used for peripheral stem cell collection and bone marrow processing. I had talked about bone marrow transplants for years, visited the National Marrow Donor Program’s headquarters, attended transplant conferences, sponsored promising clinical trials, and supported the Leukemia and Lymphoma Society—now my own son was one of the patients we always spoke about. How totally foreign was it to be on the other side. How totally frightening.
So what do you do next after receiving such a diagnosis? Rich and I definitely weren’t prepared and we aren’t the type of people to start reaching out to others in similar situations who may have been able to impart sage advice. We stumbled, we cried, we prayed, we spoke with experts, we questioned ‘why us’, and we perused the internet for anything and everything on pediatric AML with monosomy 7. But we also fiercely believed we had to be positive for Quade and Lainey and had to go about the day-to-day as normally as possible for a 9 and 10 year old whose lives would be forever changed by leukemia and who were each facing a battle like none they have ever experienced. We adopted a family mantra “life is tough but we are tougher.” Lainey went to school, she continued to go to rehearsals for the school play, she played on the local girls lacrosse team, and she had sleepovers and b-day parties, like any 10-year old. Child life services at the hospital wheeled an Xbox into Quade’s hospital room and soon family, friends, classmates, coaches, teammates, teachers, and school staff poured into the hospital to visit. Within a couple weeks, his room was filled with cards, games, lacrosse sticks, balls and goals, stuffed animals, posters, flags, balloons, and 1000 origami paper cranes to bring good luck.
In the weeks since Quade’s diagnosis, the support of our family, friends and the community has been nothing short of remarkable. One of Quade’s lacrosse coaches designed a logo with Q#8 (his lacrosse number) and over 200 boys from our neighborhood lacrosse program wore a Q#8 sticker on their helmets throughout the season. Kind supporters had the Q#8 logo or Team Q8 printed on wristbands, orange (color for leukemia) silicon bracelets, temporary tattoos, t-shirts, reusable bags, stickers, and more. The lacrosse community is small and tight knit and, as word spread about a 9-year old lacrosse player with leukemia, players from the two Denver professional lacrosse teams (Denver Mammoth and Denver Outlaws) and the University of Denver Pioneers lacrosse team came to visit Q in the hospital and signed balls, shirts, jerseys, and other lacrosse gear were sent from across the country by local youth, high school, college and professional MLL teams. Quade would lose his hair from the chemo so we held a head shaving party at the hospital and two professional hairdressers (complete strangers to us until that day) volunteered their time for over two hours and continuously shaved the heads of over 60 people with many supportive onlookers. In Quade’s honor, friends and the local Bonfils Blood Center held a bone marrow donor registration event in the Stapleton neighborhood, attended by hundreds, which generated over 140 new donor registrations. Thanks to the generosity of so many, including donations from Rich and my employers, a silent auction from local businesses, and proceeds from several bake sales, lemonade stands, and magic shows, Quade has raised nearly $15,000 for Leukemia and Lymphoma Society and Be the Match registry. He is passionate about supporting these organizations that offer so much support and hope to other patients like him.
Quade is currently in the middle of his third round of chemo at Rocky Mountain Hospital for Children. We recently received the final cytogenetic testing results from Quade’s most recent bone marrow biopsy indicating minimal residual disease of <0.1% = no detectable levels of leukemia! Since Quade has a cell abnormality called monosomy 7, he is at high risk for relapse so he will still need myeloablative chemotherapy followed by a stem cell transplant. We expect Q’s transplant to occur in October and have been told by the bone marrow transplant team at Children’s Hospital Colorado there is a perfect cord blood match available. We are beyond thrilled to receive the great news about Quade’s leukemia in remission. It is truly an answer to the many prayers and positive thoughts provided by so many.
In total, Quade has spent nearly 100 days in the hospital since that first night in April. We are blessed by the wonderful doctors, nurses, and the supportive care staff. But if given a choice, Q—like all of us—would rather be somewhere else. He wakes up every day and looks at me with his big blue eyes and says “we can do this.” There have been very few tears since those shed after Quade was told he had to spend the first night in the hospital. He is truly one of the bravest people I know and Rich and I are so proud of him and his caring sister. We’ve been told to think of this as a marathon; Q has been fighting so hard, has kept his humor and positivity despite many challenges, and while there is a lot ahead for our brave boy, we are so thankful he is still running strong!
Please read Quade’s website www.quade8.com for updates on Q’s fight against AML.