November 14, 2017, is forever etched in my memory the day my child Milo nearly lost his life, as I helplessly watched him struggle through IVs, blood draws, and emergency transfusions, racing against time to save him.
The next morning, my husband went to take a shower and not even 5 minutes later, a team of doctors walked into our hospital room. They introduced themselves as the oncology team and in that moment, I knew, I knew what they were about to tell me. As the words came out of their mouths, ‘We believe Milo has cancer, and we are confident it is leukemia,’ I felt myself collapse into a heap on the floor. My body felt numb and from that moment, the days that followed seemed to blur by as well.
We were transported to MUSC in Charleston, where we live, and the next day, received confirmation Milo did, in fact, have leukemia. B-cell Acute Lymphoblastic Leukemia, to be exact. We were taken into a conference room and sat at a table with his oncologist and the fellow, where they laid out what his first phase of treatment would look like. I do not remember much about that meeting.
My mind was racing and there was so much information it was just impossible to comprehend everything. I do, however, specifically remember them saying he would undergo treatment for 3 years. 3 YEARS! Why so long? How could my baby have to do chemo for 3 years? I felt helpless. The next day, he was taken to surgery to have a port surgically place, then immediately received his first doses of chemotherapy.
The treatment children endure while fighting cancer is brutal. We were given the risks and side effects of each chemo he had to have. Let me tell you, the list was extensive and very unsettling. Knowing we were consenting to these medications, these poisons, was upsetting but we knew, at the end of the day, without these treatments, we would lose our son. We did what any parent would do.
We fought alongside our child and watched helplessly as he suffered through multiple complications and countless hospital admissions. We watched as our once healthy 2-year-old lost his childhood and had it replaced with unfamiliar faces, procedures, doctor appointments, sleepovers in hospital beds, and the inability to go or do anything for the fear of infection.
The first year was tough. We had to adjust to a new normal, one that consisted of frequent temperature checks, dozens of home medications on top of infusions of his chemo at the clinic. During the first month, Milo lost his ability to walk due to the chemo and high dose steroids he had to take. It was painful as parents to watch our one active toddler refuse to even bear weight on his legs because of the pain he experienced.
At the end of the first month of treatment, we received the news Milo was IN REMISSION! We were over the moon but were reminded just because he was in remission didn’t mean we stopped treatment. He still needed the full 3 years because of the type of cancer he had. Leukemia can hide in the body and once in remission, if treatment is stopped, can come out of hiding and proliferate at an exponential rate. Therefore, the goal is remission within the first month and then continue to hit their body with chemo for YEARS to eliminate any traces of cancer that have gone into hiding.
Milo endured unimaginable pain and medical interventions before age five over 1,000 chemo doses, 36 sedations, 112 hospital nights, and countless procedures yet through it all, he grew resilient, turning hospital routines into “normal” and inspiring everyone around him with his strength.
This isn’t the childhood I imagined for my son or our family, but what I have learned throughout this entire journey is to be thankful. It is hard to be thankful when you are holding a bag up to your child’s face for the fifth time that day as they get sick from their treatment. It’s hard to be thankful when your child is screaming in pain, the morphine pump barely taking the edge off.
It’s hard to be thankful when you’re cleaning up the last bit of hair, they had left that just fell out while they were sleeping, so as not to let them see it when they wake up for fear it would upset them. It’s hard to be thankful when you see posts about other children playing, going to school, living life while your child is in a hospital bed connected to countless tubes receiving chemo, antibiotics, total nutrition through their lines, and on a PCA morphine pump.
Despite the fear and unfairness of Milo’s cancer journey, we now celebrate September 24, 2020, when treatment ended, and January 30, 2021, when he rang the bell 1045 days of courage, hope, and survival, reminding us and others in the childhood cancer community that no one fights alone.
