Childhood Cancer: The Ultimate Imitator

While it’s been almost 23 years since Sofia was diagnosed, there are still times that I look back at the months leading up to that December asking myself what I missed. Why didn’t I see what was happening to her?

Then I remind myself of what I learned the hard way: childhood cancer is the ultimate imitator.

Childhood cancer symptoms are very similar to those of common childhood illnesses, making it easy to hide itself from parents and healthcare providers.  A fever that doesn’t go away, unexplained bruises, tiredness, headaches, bone pain, swollen lymph nodes, or weight loss can all be because of a virus, a sports injury, growing pains, or other everyday circumstances. And the reality is that most children with these symptoms do not have cancer.  But for those who do, it's the beginning of quite a journey.

On Sunday, December 7, 2003, while I was drying Sofia off after her bath, she complained that I had hurt her. Confused, I asked what she meant. She pointed to her left groin, where I noticed an enlarged lymph node.

After putting her to bed, I immediately looked up swollen, painful lymph nodes on the internet and was comforted when I read that it was probably due to an infection and nothing more. What a relief!!

What I rarely tell people, however, is that despite what the internet said, my gut was telling me something very different. In fact, as I looked at a photograph of Sofia that night, a single word flashed through my mind: lymphoma.

The next day I took her to the pediatrician who prescribed an antibiotic and suggested it may have been due to cat scratch fever as Sofia had some scratches on her left leg from a recent playdate. 

Then Sofia developed a low-grade fever that required around-the-clock doses of Tylenol and Advil. I was beginning to worry but by the end of the weekend, the fever broke, so I dropped Sofia and Gabi off at school that Monday morning.

Not long afterward, the school called to say Sofia didn’t look well.

I picked her up and went straight to the doctor’s office. He changed the antibiotic; did blood work and consulted an infectious diseases doctor.  The blood test results showed she was simply fighting an infection and was slightly anemic. Even my dad, who was a physician with three specialties, didn’t see any reason for concern.  Her doctors gave her an additional antibiotic and sent us home.

On Wednesday, December 17^th, after dropping Gabi off at preschool, I returned home to find Sofia in bed covered in vomit. She was so weak she couldn’t even lift her head or call out to her dad.

I cleaned her up and rushed her to the pediatrician, who immediately sent us to Baptist Children’s Hospital to meet the infectious disease physician he had been consulting. She believed Sofia had a viral infection and was not overly concerned. In fact, so many children had been admitted with similar symptoms that there were no available beds.

I won’t go into every detail of what happened over the next several days. Suffice it to say that Sofia’s case got progressively worse. She was transferred to Miami Children’s Hospital and placed on ECMO (extracorporeal membrane oxygenation) within 24 hours as her lungs began to fail.

At this point, physicians agreed Sofia probably had some form of lymphoma but couldn’t explain the lung failure.  My father insisted it was cancer, but no one believed him.  And the biopsy results were inconclusive as confirmed lymphoma but not the type for which they needed to start treatment.

On Sunday, December 21^st, we were told that chemotherapy could begin, although the physicians were still awaiting final confirmation of the diagnosis. They also explained that they had never administered chemotherapy to a child on ECMO.

We could wait several more days for definitive biopsy results, but there was no guarantee Sofia would survive that long.

So, we signed the forms and chemotherapy began that night.

It was the right decision.

Sofia responded almost immediately, and her lungs began to clear. My father had been right all along...the cancer cells were infiltrating her lungs!

While Sofia was in the ICU, her pediatrician stopped by to visit. I could see the guilt in his eyes. He felt responsible for not recognizing what was happening sooner.  That was when I reminded him that nothing about Sofia’s symptoms pointed clearly to cancer. No one would have handled her case differently. No one would have admitted her sooner.

The ultimate imitator had done its best hiding not only from her parents but also from her pediatrician, ICU intensivists, etc.

As parents of children with cancer, we cannot carry unnecessary guilt. But we can learn to trust our instincts. So many times, throughout Sofia’s journey I knew something wasn’t right. Fortunately, I kept pushing until someone listened. 

Every child’s situation is different, but if there is one thing I hope you take away from our story, it is this: do not ignore your inner voice.

If symptoms worsen, persist, or simply don’t make sense, follow up. Ask questions. Get

a second opinion.  And if your pediatrician is offended by that, then they may not be the right doctor for your child.  Childhood cancer may be the ultimate imitator, but parents have a powerful tool of their own: intuition. Trust it. Ask questions. Seek answers. Because no one will ever advocate for your child more than you.