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The evening of April 29, 2018 we took our 21-month old son to the Emergency Room. We never imagined how much that one visit would change our lives.
Cancer was the last thing we imagined was wrong. We were not planning on going to the hospital that evening. For the previous few weeks our only child, Batman, had had intermittent fevers with a double ear infection. His ear infection was not improving despite having taken several courses of antibiotics. The next step was to have ear tubes placed, which we already had a referral together done.
At the time I worked as a nurse in the local NICU and had a good relationship with Batman’s pediatrician. I had been talking to him early Sunday morning at work and he suggested that I bring Batman into the clinic on Monday for an antibiotic injection.
When I got home from working that morning Ryan informed me that our child’s symptoms had worsened. Batman had been unsteady while walking for a while. But we had just chalked this up to equilibrium problems from his ear infection. However, at this point he refused not only to walk but he wouldn’t even stand up on his own. When placed on his feet he would just sit down and cry.
I knew I would be taking him to see the pediatrician in the morning, so I didn’t worry too much and went to get some sleep. After I awoke that afternoon, I went to change Batman’s diaper and noticed bruising on his legs. Then bruising appeared where I had just lifted up his legs. I knew then that something was seriously wrong.
All these symptoms prompted us to take him into the ER that evening.
After a seemingly endless wait we were taken back to a patient room and blood testing was done immediately. Within an hour ambulance transport was being arranged to take us the 2 hours from our local hospital to a larger Children’s Hospital. That ambulance ride was excruciating. We still had not been told anything definitive but knew that it was serious. Our medical backgrounds only made this worse.
At 3AM (within 30min from arriving at the larger medical center), an Oncologist walked into the room gave us news that no parent ever wants to hear.
“Your child has cancer.”
Our then 21-month-old had leukemia. More workup would need to be done to determine the type, but the diagnosis was definite.
Later that day, Batman was diagnosed with high-risk B-cell Acute Lymphoblastic Leukemia on April 30, 2018.
I remember being in shock about how this could happen so quickly. Just a few weeks prior he was running around, playing at the park, and helping me plant flowers. He had been hospitalized for RSV back in February and his blood labs looked perfectly normal. I even went back and reviewed them to make sure.
One thing I do remember clearly from that morning at 3AM was the doctor telling us how quickly and aggressive his cancer was progressing. She mentioned that 2 weeks ago his labs most likely would have looked normal, and that if we had waited much longer he may not have survived. I remember in that moment being so grateful for our intuition. We knew that something was wrong and it couldn’t wait until the next morning.
The next few weeks were a chaotic whirlwind. Prior to Batman’s diagnosis we were in the process of moving. Thankfully we were moving to the town where Batman was being treated. Ryan was planning on staying with my parents and starting his new job in a few weeks while I stayed to pack up the house and keep working my job until going on maternity leave.
Yes, I was 7 months pregnant!
Needless to say, our plans changed. For the next few weeks Batman and I either stayed in the hospital or nearby at my parents while he began his cancer treatment. Ryan would come visit us in the hospital and go to work, and then commute the 2-hours every few days to work on packing up the house and getting it ready to sell. Thankfully we had some wonderful people that came and helped him out.
Then in the midst of chemotherapy, hospital stays, and clinic visits, Batman’s little brother Superman was born on his 2nd birthday.
So much of that first few months is a blur to me. I think you go into fight or flight mode after hearing the words “your child has cancer.” We certainly went into “fight” mode and nothing else seemed to matter. Nothing mattered except beating cancer.
Our life had changed overnight. There was 2 ½ years of harsh chemotherapy ahead of us in. We went from a two-income household to one as I had to quit my job in order to take care of Batman and get him to his numerous appointments. Appointments that were always changing depending on how he was tolerating the chemotherapy. We were no longer able to make plans, everything was decided day-to-day. We had to avoid large crowds since Batman was immunocompromised. For his own safety he could no longer go to daycare and be around kids his age as often as he had been.
Life would forever be different.
We had an extremely difficult journey ahead of us. One that was full of heartache, worry, grief, anger, isolation and loneliness. But a journey that was also full of joy, love, blessings, and hope.
