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Sending Love and Christmas Hope To Connor, a Young Cancer Patient

separator The first sign was constipation. Two-year-old Connor was constipated; nothing remarkable for a child his age. Then came unquenchable thirst. “He was craving water all the time, waking up several times during the night wanting water,” says his grandmother, Jan Donley. The third symptom was a limp. “They did an X-ray and a bone scan, but they didn’t find anything,” says Donley. “But the limp got worse, until he didn’t want to walk anymore.”

That’s when they did a CAT scan of his head and found two tumors, one in the pineal gland, one on the pituitary gland. At this point, the cancer had spread down his spine.

About 8 weeks after his initial symptom of constipation, Connor was diagnosed with atypical teratoid rhabdoid tumor, or ATRT. It’s an aggressive cancer that occurs mainly in children younger than two. ATRT tumors occur in the cerebellum, the part of the brain that controls balance. The cancer spreads throughout the central nervous system. Experts don’t know why the cancer develops or what makes a child more likely to develop it.

Connor getting chemo now; in hospital since September 8th
Connor has been in the hospital—Children’s Hospital of Cincinnati--since September 8th. He’s had two chemotherapy treatments so far—four medications every 21 days. Doctors will probably add a 5th drug to that regimen. So far, says Donley, “He’s doing pretty well. His appetite isn’t always good, but he’s been resilient.” He’s had some kidney damage from one of the medications, Donley says, and they may stop that particular drug when it’s time for his next treatment.

The survival rate for children under 3 who have ATRT is less than 10 percent. Connor’s family believes that his treatment is buying them time, perhaps until researchers learn about new ways to treat ATRT. “Every day,” says Donley, “something is being learned, and that gives us hope.”

The family looked into the possibility of participating in a clinical trial, but that wasn’t a particularly good option for them. There were only two ATRT clinical trials available, and says Donley, “One trial was for children over three, and our oncologist says that he’s basically providing the same treatment as the one that would have been available in the second trial.”

Family members seek support, balance
It’s difficult on everyone in the family to have a child in the hospital for such a long time. Donley, as a grandparent, worries not only about Connor, but about her daughter, Connor’s mother Erin, as well. “You have to understand,” she says, “that my daughter is only 22. To have her go through this…it’s challenging.

“But we have a big family,” she continues, “and Erin’s husband has a big family. She draws support from them. And she’s visiting with a psychologist every two weeks to talk about ways to handle things now and how to cope with what’s down the road.” Erin doesn’t belong to a support group, but, says Donley, “The hospital has great programs there.”

Donley herself goes to the hospital every day after work, and she spends many weekend hours there. What does she do to take care of herself? “Well,” she says, “working helps. It’s good to stay focused on that. I was diagnosed with breast cancer in my 30s, and I know that having things balanced is important. I get massages. I pay attention to my spiritual life. I get exercise. It’s important to find quiet time.”

Donley acknowledges that immediately after the family found out about Connor’s cancer, they were in shock and weren’t sure what the best way was to handle the situation. But as time has gone by, she says, they’re learning to pace themselves, and to require from themselves and each other only what it’s possible to give.

“This has been hard on all of us,” she says. In fact, at the time of this interview, she had plans to go away for a weekend, and she was taking her daughter with her. “She really needs to be away from the hospital too,” says Donley. “I think this is going to be a long journey, and she needs to pace herself.

“I tell her, ‘The best thing you can give Connor is a smiling face. You have to make each day a fun day for him in that room. We have to be the best we can be for Connor. When you can’t do that, it’s time to let someone else take over for a while.”

An “eye-opening” experience
For Donley, the most eye-opening thing about Connor’s cancer has been “that we could have a very healthy, active two-year-old who could become so critically ill. There were little symptoms, but nobody put the picture together right away. It’s really been shocking,” she says.

And Connor isn’t the first grandchild in the family to have health problems. Donley’s daughter Erin has a twin sister who had a baby girl seven months after Connor was born. The baby had a rare congenital heart defect and she too, spent a lot of time in the hospital. “Fortunately,” says Donley, “she’s 19 moths old now and doing well.

Wishing Connor and his family the very best at Christmas
For Connor and his family this season, we send love and hope. Our hope is that his room is full of family smiles and lots of fun on Christmas day. We send them prayers for their journey.

Personal Interview with Jan Donley.
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