It was the phone call that no parent wants to get. “Max has leukemia and we think it’s a rare form of leukemia,” said the doctor. I was getting my haircut and had to leave the salon immediately, not sure if I would vomit on the sidewalk or pass out. I was in a fog the whole drive home, tears flooding my eyes. The normally short drive home took forever. I needed to hug my boy.
Max was 7 years old. Less than a month before his diagnosis, he received a clean bill of health from his pediatrician at his well check up. He had a few urinary issues for which we were referred to a Pediatric Urologist. The Pediatric Urologist thought Max had an enlarged spleen so he ordered a scan. After receiving the results, he handed me a business card and said call this doctor. When I called the next day, they answered the phone “Pediatric Oncology/Hematology Group”. I almost hung up thinking surely I must have dialed the wrong number. How did urinary problems lead to cancer?? I felt sick to my stomach. This must be a mistake. Was this real or a nightmare?
Max was admitted into the hospital immediately for an array of blood work for further analysis. The doctors had already ruled out that it wasn’t the most common form of leukemia, ALL, which has a 90% cure rate. How badly I wanted it to be ALL. Preliminary test results came back and his diagnosis was AML or Acute Myeloid Leukemia with Myeodysplasia, a disease more commonly found in adults. The once hoped for ALL diagnosis with a 90% cure rate was now AML with a 40-50% cure rate. I remained optimistic thinking we had a 50/50 chance of beating this. Those aren’t bad odds I told myself.
Then several days later we got news that Max had Monosomy 7 in his leukemia, a genetic marker that made his aggressive leukemia even more difficult to cure. In that one phone call, we went from a 40-50% survival rate to a 10% survival rate. Could this nightmare get any worse?
Max started his chemotherapy treatment immediately at a local Portland Hospital. We contacted other major children’s cancer hospitals throughout the country to get second and third opinions about whether his treatment protocol was the best approach. Doctor after doctor confirmed that Max’s treatment was standard protocol for his age and disease. Yes we were on the right course for recovery.
Max received 2 rounds of chemotherapy to put his leukemia into remission. We knew that ultimately he would need either a bone marrow transplant or a cord blood transplant for a full recovery.
After Max’s second round of chemotherapy, he developed an aspergilla’s or fungal infection in his lungs. The standard protocol chemotherapy dose that Max received was too strong for his little body and it wiped out his bone marrow and immune system. His body had a hard time recovering.
Our doctors in Portland sat us down and told us they had “killed” his marrow with too much chemotherapy even though they followed standard protocol. Like I said, could this nightmare get any worse?
The Portland doctors suggested that we take Max home and “make him comfortable.” There was nothing more that they could do. This all happened within a two week period of time. We were not going to give up on our Brave Warrior, our son, that easily. Surely there had to be something that could be done.
My husband, Chris, had been communicating with a world renown Pediatric Oncologist at Duke University who had pioneered cord blood transplants. We were not having any success in finding a bone marrow donor for Max so a cord blood transplant was our only option. Within less than 24 hours after our “take him home and make him comfortable” discussion, we had Max flown by Medical Air Flight to Duke University Hospital. Our Portland doctors recommended against it because they weren’t sure he would survive the flight. With room for only one adult and a nurse on board, Chris opted to go with Max and I flew commercially. I did not know if I would find my son alive at the other end. Thankfully, he made it.
Weeks later, the doctors at Duke informed us that they didn’t think Max was going to make it through his first weekend there. He did, and he proceeded to get better. So much so, that he played basketball in the halls with his favorite doctors, had water gun fights with his favorite nurses, and was known as the Bingo King in the game room. He was brave beyond measure and will always be our BIGGEST HERO. Max continued his fight, making those around him laugh and smile. He was always more concerned about others than himself. He endured another round of chemo, removal of part of his spleen, a seizure, and then received his cord blood transplant. Despite these setbacks, we were incredibly hopeful. But because his immune system was once again compromised, his fungal lung infection resurfaced. He kept a brave face but was hit with one infection after another, until finally, he was admitted into the Pediatric Intensive Care Unit. We knew that each week that he spent in the PICU on a ventilator was a week further away from recovery.
The time had finally come when we had to let our little boy go. There was nothing more that the doctors could do for him. It is something that cannot be expressed in words and has forever changed our lives. Yes, every parent’s worst nightmare had become our reality. In seven short months, Max went from being a healthy, thriving young boy to an angel.
In the years that have followed Max’s passing, many blessings and gifts have occurred. With two other boys to care for, we learned to move forward, remembering our sweet Max every single day. As the saying goes, what doesn’t kill you makes you stronger. In 2010, in Max’s honor, my husband and I co-founded the Blue Butterfly Campaign, a non-profit that funds research for childhood AML research to find better, less damaging treatments so someday no other children will need to suffer from this awful disease. So that there are no longer a standard protocol that doctors follow, but instead a treatment plan that is specifically tailored to each child’s genetic makeup ensuring the best chance of survival.
Many thanks to Molly Lindquist for asking me to share my story and for the tremendously important work that they are doing through Consano. It’s a brilliant program and we support it 100%.