Last year, a week before Christmas, I brought my three kids to my parents’ house for a family gathering. It was a wonderful day, capped off with a professional family photo shoot. I wasn’t sure how my youngest, Quinton, would do—he was only four months old. But he took to the camera like a natural, flashing his beautiful blue eyes for the lens, bundled up in an old-fashioned sleigh and an adorable knitted hat.
Once the shoot wrapped up, I put him down for a nap. When he awoke hours later, he was irritable and hot to the touch. We decided to head home, assuming that a good night’s sleep and some acetaminophen was all he needed.
He was restless that night, waking every hour or two. In the morning, he was still feverish and becoming lethargic, so I decided to take him to the clinic at our local hospital, where the doctor diagnosed him with an ear infection. I was so angry with myself. We shouldn’t have done that outdoor photo session, I thought. Still, I went home with antibiotics, satisfied that we had found the culprit and thankful there would be little disruption in our holiday plans. Christmas was still five days away.
But Quinton didn’t respond to the medication. In fact, his condition seemed to worsen every hour. He moaned constantly and vomited after most feedings. Medication was controlling his high temperature, but he didn’t seem right. I decided to return to the hospital.
This time they took him for X-rays, which revealed pneumonia in his left lung. It was at this point the doctors in our small town decided his care was beyond what their facilities could provide and we were sent by ambulance to the Children’s Hospital in London, Ont.
When we arrived in the emergency room, the doctors and nurses went right to work. They were concerned that Quinton had become severely dehydrated and felt it was essential that they put in a central line to give him fluids.
Turns out, it’s extremely challenging to get a needle into the vein of a four-month-old baby—and it can be nearly impossible in a severely dehydrated baby. Over and over again, the nurses pushed a needle through his skin, fishing around to look for a vein with no success. Our anxiety grew with each poke. More and more nurses and doctors arrived to help. All of these people were jabbing at his perfect newborn body in what seemed like a dire effort to save him, and I could do nothing but stroke his soft brown hair and whisper in his ear that I loved him and how sorry I was.
After several hours and countless attempts, one of the doctors was able to secure access. The vital fluids from the newly tapped intravenous bag were able to flow into his tiny body. My husband and I held each other with relief. We assumed that the fluids, additional antibiotics and day or so spent in the hospital would be all that was needed for us to be sent home.
We were mistaken.
The worst news we could ever get
I’ll never forget the moment when the doctor told us the results of Quinton’s blood test. It was three days before Christmas and my husband and I were seated in a private cubicle in the emergency room with an attending physician. He was direct and compassionate as he shared the news: Our four-month-old baby had leukemia.
I was going to lose my baby.
“This must be a mistake,” my husband and I said. Quinton had seemed perfectly healthy up until just a few days ago. How could this happen to him? Why had this happened to him? Nauseated and dizzy, I was pretty sure I was going to collapse onto the hospital floor. Then I felt my husband clutching my hand as tears streamed down his face and I knew at that moment that I had to be strong for my family.
We were admitted into the critical care unit that evening. Additional blood work showed that Quinton had a cancer known as acute lymphoblastic leukemia (ALL). In the days that followed, we were told that he would need a lumbar puncture (otherwise known as a spinal tap), a bone marrow test and a Broviac catheter inserted into his chest to deliver chemotherapy. At first, I questioned these so-called life-saving measures: Was it right to inflict such pain on our sweet little baby? I didn’t want to see him suffering in a hospital bed, hooked up to tubes and machines. I had watched the telethons—surely these procedures and medicines would only prolong the inevitable. These doctors would not be able to save my baby, so was it fair to extend his pain? How does a parent justify a decision like that?
But after many tears and a great deal of heart-wrenching discussions, my husband finally concluded with one thoughtful statement: “I don’t think I’m ready to say goodbye to him yet.” I will never forget those words. We agreed to let the doctors do all that was possible to save our son.
Sadly, the news only got worse.
We learned that Quinton had the high-risk type of ALL. Thanks to his very young age and the gene rearrangement of the disease, his form of leukemia would be particularly difficult to treat. The doctors didn’t know how he would respond to treatments. What they did know was that he wouldn’t leave the hospital for at least four to six months—possibly longer. The treatment would last into his third year of life. We were told to prepare for the immediate and future unpleasant side effects associated with the medications he would be receiving. During many of these conversations, my husband and I found that the only way we could cope with what was about to happen was to not consider any of the information too carefully. Thinking too much about the chemicals they were about to inject into our perfect little baby’s body and the horrible side effects associated with them was simply too much to bear.
The treatment begins
We should have been wrapping presents and baking cookies, but on the day before Christmas, we were sitting nervously in a hospital waiting room as Quinton was taken for surgery for the placement of his Broviac central line and his bone marrow biopsy. He would also receive his initial dose of chemotherapy.
The doctors convinced us to go home and visit with our other kids—it was Christmas Eve, after all. When we returned to the hospital later that day, poor little Quinton was lying in his crib, quiet, with a look of confusion on his sweet little—now puffy—face. I asked the nurse if I was able to hold him, looking nervously at the bandages and tubes hanging from his naked chest. She helped lift him into my arms and I rocked him gently and sang to him, kissing the top of his soft hair. I promised that I would never leave him and whispered that he was the bravest little baby anyone could ever know. At that moment, our eyes met and I had a feeling that, somehow, he was going to be OK.
We were now the parents of a severely sick child, but we were also still the parents of two healthy kids back at home in our small town, almost an hour’s drive from the hospital. Our extended family jumped right in to care for our six-year-old daughter and three-year-old son, helping to ensure that their holiday traditions remained intact so we could focus on Quinton.
We didn’t want to leave Quinton, especially on his first Christmas. But we knew how important the day was to his siblings, and they, too, needed their mommy and daddy with them. We left the hospital in the very early hours on December 25 so we could arrive home in time for the children to wake up to the magic of the morning. My mom and sister stayed by Quinton’s side that day at the hospital. Their presence there made all the difference—I don’t think we could have focused on his brother and sister that day if we knew that he was alone. The following day, Quinton was stable enough to be moved and was wheeled up to the paediatric floor, where he would continue his treatment.
About a week after his initial treatment, we were told that Quinton was responding favourably to his treatment. It was still early, but those were the words we had been waiting so long to hear.
A long journey, but never alone
We weren’t at the hospital long before we were visited by a family support worker from Childcan, an organization based in London, Ont., that supports families when a child goes through cancer treatments. She provided us with meal vouchers, a parking pass and tons of other resources. A social worker from the hospital arranged for our stay at Ronald McDonald House, which became an essential place for our family to gather strength and stay connected. It allowed us to remain close and provided a space for me to retreat to with them when others were able to care for Quinton.
There were so many other supports: child-life workers, Interlink nurses, music therapists. Financial aid was offered to us from the Pediatric Oncology Group of Ontario. We were truly overwhelmed by the support that is out there for parents of sick children. So many of them rely on the support of charitable donations and countless volunteers.
Although we’ve endured many difficult days and weeks through all of this, we have never felt alone on this journey. The essential supports from the hospital and community have allowed us keep our focus on our son.
What the future holds
After eight months of treatment, they tell us that Quinton’s prognosis is good. A similar diagnosis made 10 years ago, we were told, would not have been as favourable. Quinton has unfortunately suffered a great deal, and there’s no doubt there will be more challenges to face in the years to come. But thanks to research conducted on specific cancer treatments, he was able to receive medicines that helped alleviate some of the more awful side effects. Research on the treatment of childhood cancer is essential for discovering such remedies and for helping to save the lives of thousands of children who are diagnosed with the life-threatening disease every year.
There was a time when I didn’t think my son would live to see his first birthday—a time when I was scared to hope for another day with him. But now, thanks to so many amazing professionals, support systems and new medical innovations, my family has hope. Quinton turned one year old on August 19, and I’m now allowing myself to look to his future. It’s filled with many more birthday cakes, candles and wishes to be made. And each year, when he blows out his candles, I will make my own single wish that we will one day find a forever cure for all childhood cancers.
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