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One mom's story
My daughter Brittany is now 8. She's at the age where she is starting to understand what she went through as a baby when she was diagnosed. In some ways, we had it easier because she doesn't remember most of what happened to her. In other ways it was harder, though, because she was so little.
One bright June morning, I took Brittany, who was 15 months old, and our older son to pick strawberries. Brittany had a well-child checkup at the pediatrician's that day, so we could not stay long.
We made it to the appointment on time. Brittany still had pink cheeks from eating strawberries. The exam was going just fine, but when the doctor began feeling her belly, she was crying a lot. He suddenly had a more serious look on his face and asked me to try and hold her still. When he finished, he told me he was going to make arrangements for us to have an ultrasound of her abdomen.
When I walked out into the waiting room, the nurses had horrified looks on their faces. They mentioned something about checking to see if her liver was in an unusual spot and someone said something about a tumor.
The ultrasound revealed that Brittany did indeed have a growth in her abdomen. I went back to the pediatrician to discuss the results. He told me Brittany had a neuroblastoma and that we would have to go to Yale-New Haven. He asked me when I wanted to go. I thought he meant what day. He meant what time. We went that afternoon.
I think every adult at some point thinks about how he or she would react to being told they have cancer. But no one expects to hear his or her child has cancer. There is absolutely nothing you can do to prepare yourself for that news. I'm not sure how we got through those first few weeks, but we did.
Brittany was in the hospital 10 days to start, undergoing diagnostic tests. The amazing thing was that no one else ever was able to feel that tumor again because of where it was located. She had no symptoms. At first, they thought she was stage I, with the tumor being encapsulated, to be treated with surgery and light chemo. But there was involvement of her liver, so she went from a stage I to a stage IV just like that. As for her chances, I refused to let anyone tell me what the odds were. I'm like that. On the other hand, some people need to know those statistics.
The staff at Yale-New Haven really helped us through. I don't know how they do it, really. I remember friends asking me if we got a second opinion. We never had the time. Every day counted in treating this type of cancer. Brittany had very aggressive chemotherapy for six months. All of her treatment was done as an inpatient, with each round lasting three to six days. I stayed with my daughter at the hospital all the time. I would bring her terrycloth doll and she would snuggle with it. Remember, she was only 15 months old.
We started going to the support group for parents. The most important thing for my husband and I was talking to other parents who were going through the same thing. Now, eight years later, I'm still involved in the support group, this time helping parents whose children are newly diagnosed. Parents who come to the first meeting sometimes think it's odd that as a group we can laugh or tell a joke. But that's only because we all understand what each of us has gone through.
Brittany's cancer was particularly tough on my family because before I was born, my middle brother was diagnosed with cancer. This was long before the new treatments had been developed. Growing up, I saw how it affected my oldest brother and I didn't want to let that happen to my son. My son was three and a half at the time Brittany was diagnosed. We didn't hide anything from him. He did worry a lot about his sister. When we had to give her shots, we always told him it was to help make Brittany better.
Then finally came the time when Brittany's treatments were ending. When they started, I remembered thinking the best day would be when they were ending. But at the end, I felt like someone had pulled the rug out from under us. I wanted her to keep going, keep getting the medicine that was killing the bad cells.
She's now eight and goes back once a year for check-ups. I dread it and look forward to it at the same time. Cancer has changed us a lot, changed our outlook on what's important; and what's not. We can only look ahead.
Also: Courtney's story: An account of cancer treatment from a young woman's point of view.
Last revised: May 9, 2007 (dh)
