Every Parent’s Worst Nightmare: My Two Year Old Son Had Leukemia
The journey and realizations of a Fil-Am mom / Special Ed teacher whose son kicked cancer’s butt
Halloween 2010 was just perfect — it landed on a Saturday and we all headed to our friends’ house in New Jersey. The plan was to trick or treat around the neighborhood right before sundown, and drive back home to our respective New York apartments just in time for the sugar crash to settle in. I clearly remember thinking to myself: I wouldn’t be surprised if Benjamin has a little fever after Halloween—cold weather, walking around, yeah…a little fever might happen.
And so it began
A couple of weeks later, we met up with some friends in Madison Square Park. While the kids were playing, my friends and I noticed Benjamin had a limp. Hmmm…he had not worn these camo sneakers for quite some time now, so maybe it’s a little tight? My friends (an occupational therapist, a speech therapist and another special ed teacher) and I removed his shoes and made him walk around the playground in just his socks — still limping. That’s odd. We put Benjamin’s shoes back on and he continued to play. Slowly the limping became heavier and more evident. Back to the stroller he went and we headed home.
We immediately took him to the pediatrician who said it might be a virus running through his system. We went to an orthopedic surgeon, as per doctor’s advise, nothing there. He chucked it off to possible toxic sinovitis, a temporary condition that causes hip pain in children. Blood tests were ran and they all came back clear. Ibuprofen should do the trick — and it did!
The inevitable happened
One morning we woke up to blood all over Benjamin’s bed — thick, mucus-like, bright red blood that went through the pillowcase, the pillow, the bed sheet and on to the bed. Thick red blood all over from his nose! I freaked out and we rushed to see his doctor. Again, the blood test came back clear. “It must be the virus making its way out,” the doctor said. Made sense.
Thanksgiving rolled around and we went to a friend’s house for dinner. All of Benjamin’s friends were there and he still wasn’t feeling 100%. He had been on and off sick for almost a month and he was absent a lot in school. Not uncommon really for kids living in the U.S. because of the climate.
On December 1st, Benjamin’s school director called me and said his energy was so low and had been sleeping most of the day. “This is not normal anymore, Bernisse. See another doctor for all I care,” she candidly said. So we drove to see his pediatrician again at 5:30 pm — just as the clinic was about to close. They waited for us because they too, were concerned. Another blood test was done, and this time all I got was “Are you fit to drive to the hospital?” So we headed to Maria Fareri Children’s Hospital’s ER. I called my husband, Allan, to meet us there.
In the ER they swaddled my son who was then 2 years and 9 months old, in a bed sheet with only one arm sticking out so they could poke and draw blood again — the second extraction in a span of hours. And this time, they also inserted an IV line.
A parent’s worst nightmare
By then, I was nervous and anxious, but remained calm. Minutes later these words were uttered to me that I will never forget: I’m sorry to say but your son has Leukemia. Everything else was a blur afterwards. I do remember the nurse putting her hand on my shoulder and said something along the lines of “I’m sorry.”
See here’s the thing — I didn’t know exactly what Leukemia was. I thought it was something respiratory like Bronchitis or Pneumonia, but more serious. I asked “Will I be here long? I don’t have clothes.” All I got was “Honey, you’re going to be here for a while.” As soon as the nurse left I googled Leukemia and there it was, the word CANCER.
Four years, three months, twenty days
That night, I didn’t sleep and just cried. Why me? Why my son? No one in my family has ever had Leukemia. What is happening? I was so confused and felt so helpless.
The next day the doctors came in and gave us a binder filled with notes. Each step of the Chemotherapy journey carefully mapped out, each medication and possible side effects were spelled out, every left or right turn that could happen—explained, a glossary of terms and everything we needed to know was in that binder. Once the plan was laid out, the crying stopped. Okay, so there is a plan. If Benjamin reacts this way, this is what happens next. If he doesn’t respond, then we go this way. At least there was a map. We will be okay, I thought — I hoped.
Benjamin’s diagnosis was Acute Lymphoblastic Leukemia. On December 4, 2010 we started Chemo. We left the hospital 11 days after the day I brought him. Everything happened so fast that we forgot his actual remission day and started celebrating it on January 2, 2011.
Four years, three months and twenty days later on March 23, 2014 — Benjamin ended his Chemotherapy journey and went into remission.
The COVID life was our normal
A perfect way to describe our life then is exactly what everyone today is going through because of COVID. As a precaution, we pretended that everyone was sick and had to live in a bubble — our only job was to make sure Benjamin never gets sick. Period.
A fever would have us heading straight to the ER with a 3-night minimum stay in the hospital (which happened several times). This would be on top of a monthly lumbar puncture that he had to do as part of his therapy. Benjamin would be under anesthesia and Chemo medication would be delivered directly into his spine. It sounds horrible, but that was routine. He looked forward to waking up with McDonald’s hash browns and a sausage McMuffin— every single time. Actually, he just had the muffin portion, Allan and I were treated to the sausage.
Most of the time, it felt like the world was running normally and our family was the only one on lockdown. There were parties and get-togethers we could not always attend because if anyone had a slight cold, it could be disastrous for Benjamin. We dealt with our own guilt — like having a little bit of fun while our son was undergoing Chemotherapy always played with our minds.
If a Cheerio fell on the floor, straight to the garbage it went. There was no 5-second rule. We carried around alcohol sprays and wore masks way before it became a thing. Benjamin was and still is a hand-washing pro.
Find your tribe and love them hard
I clearly remember so many things about the journey we experienced as a family. We had a “tribe” who helped us juggle work, parenting and Chemo. People always wondered how Allan and I adjusted to OUR “new normal”, stayed positive and kept our heads in place. For starters, Allan’s calm demeanor gave us so much comfort. It helped me think logically and be in the moment.
We also had an amazing support system made up of family and friends. Our friends here in New York rallied together to help us any way they possibly can. Having my girlfriends take the reins and make sure our apartment was clean and that we had warm food waiting for us when we got home from the hospital was nothing short of amazing. Our sisters from both California and Manila came at some point to be with us. That kind of understanding and patience from everyone around us made us feel human, and somewhat “normal.”
Then, we joined what I call cancer camps — Hole In The Wall Camp and Camp Sunshine — for families who were in the same situation. We met people who truly understood the highs and lows — from the worries and tears, all the way to making jokes about stuff only we would get. At these camps, we were able to let loose and enjoy life within cancer parameters — a doctor onsite and everything was pretty much medical-grade level of clean.
Throughout those years, we needed the connections to people who were on the same boat, but the distractions outside the cancer realm were also necessary to keep us sane. The experience is truly very humbling.
Life after cancer
Benjamin will be 13 in March and has been in remission for 10 years now. A year after he ended Chemo, he became a big brother to his sister, Cobie. And on the first day of shelter in place for COVID in 2020, we added a fur baby to our family, Dallas.
If you didn’t know Benjamin as a kid, you would never guess he went through so much at such a young age. He received his black belt in Teakwondo at 10 years old and is an avid chess player. He joined soccer, basketball and baseball leagues, and Allan coached those teams. Benjamin is the ideal son we had always hoped for the day he was born. Every year we celebrate December 1st (diagnosis day) and January 2nd (remission day) as milestones. Both dates are a reminder of how precious life is and how fortunate we are to get to call this brave kid, this fighter, our son.
At the tender age of 2 years and 10 months, Benjamin was asked to fight for his life and all Allan and I could do was watch and be with him. Not gonna lie, it has been a roller coaster, but we are beyond thankful. It changed us for the better. We are, in every essence, so blessed to have Benjamin’s cancer story be a continued positive story. We are also aware that it can recur, but we choose to have faith, just as Benjamin does.
Getting through life’s challenges
I remember setting up an Instagram account in 2012 to document Benjamin’s journey and I am so glad I did that. The account is solely about him and his experiences — during Chemotherapy up to this day. I told him we can change the handle when I hand it over to him but he cannot delete the old pictures ever because it is all there for him to keep. I want him to remember what he went through.
I always tell people that in going through hardships, humor and prayer are the two things that can take you places. There is only so much you can do, and the rest you need to leave up to God. Trust in his plans, and run with it. And honestly, life is too beautiful and too precious to take so seriously. Take a look around — who would have ever thought we would be living through a pandemic in this lifetime, right? So take everyday with a grain of salt. Enjoy. Laugh, even it means laughing at yourself. And always look at the bright side, because through the darkest of times, there can only be light! Most times, it can’t be any worse than your kid having cancer.
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