North Huntingdon boy fights cancer effects with golf, video games
July 8, 2010 4:00 AM
By Kate Luce Angell
On Memorial Day 2009, Genre Baker of North Huntingdon was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells and the most common form of childhood cancer.
This may help to explain the dedication Genre, now 9, and his family have to helping other families with cancer. But it doesn't begin to explain what the last year of the Bakers' lives has been like, or why other organizations and individuals have helped Genre's brainchild, the Genre's Kids with Cancer Fund.
There was a golf outing a few weeks ago at Edgewood Country Club to benefit the fund, which provides a handheld video gaming system to each child at Children's Hospital who is diagnosed with cancer. The fund also offers free golf lessons and photography for young cancer patients, as well as emotional and spiritual resources for families of a child with cancer.
Then on Aug. 28, there also will be a 5K run in Irwin Park, called Footsteps in Faith, to benefit the fund.
Although Genre's Kids with Cancer Fund wasn't founded until October, the real beginning was that May day when, after weeks of baffling symptoms, Genre was diagnosed with ALL.
Daunette Baker, 43, said she suspected cancer the first time she saw mysterious lumps running up the side of her son's neck in April 2009.
"But the doctors kept telling us his blood work was fine, that it must be viral," she said.
Then on Memorial Day, she and her husband, John, 46, a construction contractor, took Genre to Children's Hospital for pain in his hips and back.
Genre underwent surgery to install a port in his chest the next day. The following day, he received his first treatment in a course of chemotherapy that will last into 2012.
Mrs. Baker said the experiences have shaped her and her family in unexpected ways, good and bad.
She was already homeschooling Genre, his brother, James, 11, and their sister, Gionna, 6. But she said she realized later how fortunate that choice was when she could bring her children with her to the hospital for Genre's initial stay and, later, his treatments.
"I'm so proud of them," she said. "They would sit with him when he couldn't get out of bed, and get him drinks."
It also quickly became clear that "rules about video games had to go out of the window."
"You wait around a lot," Genre explained. "A doctor's appointment, sometimes it would last three or four hours. And some of the transfusions were like three hours."
It was Genre's reliance upon his handheld video game during those long hours that motivated him to start his charity when his initial hospital stay was over.
Word of his plan reached Pittsburgh writer Virginia Montanez, a member of the Bakers' congregation at Norwin Christian Church in Irwin, who has blogged anonymously under the name PittGirl.
She was already involved in an effort headed up by the Children's Miracle Network and Microsoft to donate an electronics room at Children's Hospital, and had planned to reveal herself as PittGirl during the fundraising effort.
Inspired by Genre's wish, that fundraising effort became Make Room for Kids, which on April 30 helped to coordinate donations by Pittsburgh and national Microsoft employees of 23 Xbox systems for use by some of the most seriously ill patients at Children's.
Another of Genre's inspirations for helping other children with cancer came because of the side effects of his chemotherapy. Some of the drugs used to drive ALL into remission are extremely poisonous, causing symptoms in children ranging from extreme nausea and vomiting to joint pain and stiffness.
It was the latter that caused Genre to reflect that while his beloved softball might be off limits, golf might be a sport that kids with cancer could play, keeping them active and getting them outdoors.
GKWCF now offers kids with cancer golf lessons for free from pros at several area courses.
Mrs. Baker said she and her husband also have learned from their experiences as the parents of a cancer patient, and one lesson led to yet another mission for GKWCF.
"Last year, a friend made up something she called a 'to-go' bag for me to take with me to the hospital on nights Genre got sick," she said. "It has ponytail holders, Tums, Tylenol, a pen and notepad -- just anything you might need at the hospital that you're likely to forget on a rush out the door."
Mrs. Baker hopes to find funding to make the to-go bags available to every family at Children's that has a child who has been diagnosed with cancer.
One of the hardest things she had to learn to do, she said, was to give up control.
"I'm not one of those mothers who needs to control everything, but it was extreme," she said. "I literally couldn't make the smallest decision about Genre's life, down to whether or not to give him a multivitamin."
Vitamins, she was told by her son's oncologists, can interfere with the body's absorption of methotrexate, a chemotherapy drug.
Another lesson was patience with well-meaning friends and relatives who urged them to look on the bright side of Genre's diagnosis.
"The most common form of ALL is B-cell, which is 90 to 95 percent curable," said Mrs. Baker. "Genre had T-cell, which is 80 to 85 percent curable.
"Those are still great odds if you're betting on football, but if it's your child's life, you don't even want them in a room where 15 to 20 percent of the people in it might not make it."
The most important lesson, she said, is one that she wishes she could communicate to all parents -- without them having to live through the nightmare of having a child diagnosed with cancer.
"We all say, 'I'm going to pay attention to the little things, enjoy my children,' but how many of us do?" she said. "My advice is that you don't know what will happen in the future. Put the bills and the computer away and go toss them a ball, read them a book."
Genre has been in remission since his treatment last year and his mother reports that he has "hit every mark they like to see them hit," which indicates a good chance of a recovery. But ALL patients are not considered cured until they have five years of remission behind them.
While his treatments continue, the GKWCF also continues its work, including putting games into the hands of kids like Genre.
"Children's has six to eight cancer diagnoses a month," Mrs. Baker said. "That's $200 to get games for those kids, so we need to keep going."
If anyone is looking for another way to help, Genre said the best way is to become a platelet donor, a procedure that is similar to giving whole blood, but takes a little longer and helps cancer patients by ensuring a supply of healthy platelets.
Genre has plans outside of his work with his charity, including some thoughts on what he might be when he grows up.
"Until I was at the hospital, I thought nurses were always girls," he said. "But now I know they can be boys, too, and I'd like to become a nurse so I can help kids with cancer in that way."