Dancing with joy: A mother’s story

Jamie, Harlow and Ben Page are supporting the second annual Chicago Dance Marathon. The debut event in 2010 raised $240,000 for Children’s Memorial.

Two years ago my daughter Harlow was in an isolation room at Children’s Memorial Hospital, undergoing the first of two stem cell transplants to prevent a cancerous abdominal tumor in her abdomen from growing back. Recently, my husband Ben and I watched our healthy little girl, now almost 3, in her first ballet recital. If you don’t think the world we live in is amazing, Harlow is proof that it is. My name is Jamie Page, and this is our story.

Two weeks after Harlow was born, she became very fussy and would cry for hours on end. Our pediatrician assured us that it was only colic and would pass. Then Harlow lost her appetite, and with it her interest in everything else. There were no more smiles on her face.

We finally sought a second opinion from another pediatrician. After examining Harlow, he gave us alarming news: He suspected she had a mass in her abdomen, and suggested that we take her immediately to our local hospital. There, tests indicated she had a grapefruit-sized tumor, one that was causing urine to flow back into her kidneys. Even worse, the tumor was growing quickly.

She underwent surgery to correct a complication in one of her kidneys caused by the tumor, and then a biopsy was performed. Several pathologists from around the country examined samples of Harlow’s tumor. The only thing they agreed on was that none of them had seen one like it before.

One of Harlow’s doctors referred us to Elaine Morgan, MD, an oncologist in Children’s Memorial’s Center for Cancer and Blood Disorders. He told us that if Harlow was his granddaughter, Dr. Morgan was the person he would choose for her care. Our little girl was immediately transferred by ambulance to Children’s.

I remember sitting in the waiting room in the oncology clinic that first day noticing how many kids were there for treatment. I had always thought cancer was something that happened to adults, not kids, and now I was looking at all these children who were fighting different types of cancer. That let me know that Harlow was far from alone in her battle.

We liked Dr. Morgan from the start. She was very direct and didn’t sugarcoat anything. She said since the tumor most resembled a brain tumor, the best course would be to treat it with a very aggressive chemotherapy protocol.

We were also told about the possible side effects of chemo — including risk of infections and infertility. Ben and I seriously contemplated whether we wanted to put our precious girl through it or to just make her comfortable in what might be the last few months or even weeks of her life.

We decided to let Harlow decide. She would receive a single round of chemo, and her reaction to it would let us know if she had the will to fight her cancer. If not, we would stop treatment. She had been crying for months in misery, but after the first treatment she was beaming at us. Ben and I looked at each other and thought, “How could we not give our daughter a chance at life?”

Amazingly, after her third week of chemo Harlow’s scans indicated her tumor had shrunk dramatically. After 12 weeks of treatments, her doctors decided the tumor was small enough to remove surgically. A few hours into the surgery, we were told to meet Harlow’s surgeon, Katherine Barsness, MD, in a waiting room. We were expecting the worst. Instead, what she told us seemed like a miracle: she and her surgical team were unable to find any signs of the tumor!

The joy of that miracle faded quickly, unfortunately. The next day Dr. Morgan recommended that Harlow should undergo not just one but two stem cell transplants to prevent the tumor from growing back.

The risks and potential side effects of a stem cell transplant are terrifying, but the rewards can be amazing. For nine weeks we virtually lived in Harlow’s isolation room at Children’s. I stayed there during the week and Ben took over on weekends. While it was difficult to be there every day, I can’t even begin to express how wonderful the staff at Children’s was. They became our family, our support system — from the doctors and nurses to the woman who washed the floor in our room and “Charlie,” the man who emptied the trash every night.

Everything at Children’s is focused on making children happy and comfortable. Also, Harlow’s entire medical team listened to our concerns and answered all of our questions. It was completely different from anything we’d experienced elsewhere.

After an incredibly emotional and difficult 18 months, which included a combined 12 weeks of chemo, more than 40 blood transfusions, eight surgeries, two stem cell transplants and 100 days at Children’s Memorial, I’m thrilled to say that Harlow’s cancer is in remission.

When she goes to Children’s now for checkups, her medical team is amazed when they see our healthy and happy little girl. Harlow is a real spitfire, with tons of energy. She loves to run, giggle and dance, and likes to sing herself to sleep.

Speaking of dancing, Harlow, Ben and I will be on hand at the second annual 13.1-hour Chicago Dance Marathon to benefit the hospital on March 19 at the Sheraton Hotel & Towers in downtown Chicago. The event is sponsored by KPMG. Coincidentally, it will also be Harlow’s birthday. We became involved last year when a friend formed a team in honor of Harlow and asked us to join, and this year we have our own team, Harlow’s Dancing Divas.

We want to give back to the hospital in any way we can, and to help other children who are going through challenges. After all, Children’s Memorial has given us the best gift ever — a future for our little angel.

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