NHT boy?s family helping others deal with cancer trauma
When a child is diagnosed with cancer, most parents are overwhelmed and don't know what to expect in the coming days, weeks and months.
One North Huntingdon Township family is using its own experience with diagnosis and treatment to help others in the same situation.
Genre's Kids with Cancer Fund was developed in 2009 after then 8-year-old Genre Baker was diagnosed with leukemia and underwent an initial hospital stay.
After returning home, Genre told his parents he wouldn't have been able to make it through the long hours of sitting for treatments without his handheld gaming system. He wanted to provide a system for every child diagnosed with cancer.
Since then, family, friends and those touched by his story have helped Genre and his family to provide each cancer patient at Children's Hospital of Pittsburgh of UPMC with a Nintendo DS or other "electronic distractions."
"As an alternative (to the DS), we offer mp3 players and iTunes gift cards to help the kids pass the hours spent in chemotherapy and blood transfusions," said Daunette Baker, Genre's mother. "The younger kids get Leapsters and games to go with the systems. We provide cell phones that say the ABCs and trucks that count for the littler kids. For the babies, mobiles and other toys for them to look at. The distractions are priceless."
The family has used September, recognized as Childhood Cancer Awareness Month, to continue to educate people about not only their fund, but also pediatric cancer research.
She said only 3 percent of funding allocated for cancer research is dedicated to pediatric cancer. By comparison, funding for breast cancer research is nearly three times that. Baker said she doesn't want to take away from the significance of researching other cancers, but she wants to see a more equal distribution of funds.
"Pediatric cancer survival rates have increased significantly," she said. "Imagine what could be done with (more) funding."
Genre's Kids with Cancer Fund also strives to help families make it through each hospital stay and doctor visit.
A recent addition to the fund's offering is the "To Go Bag," which Children's Hospital provides to parents when a child is diagnosed. The bag contains a number of supplies designed to help parents get through the initial days after diagnosis and each hospital stay thereafter.
Baker said she was given such a bag shortly after Genre's diagnosis.
"On that first day, my mind was blank," she said. "The only thing I could think about was that my son had cancer. Cancer. I couldn't possibly know that I would have a headache for the next month. I couldn't know that I would be sick in my stomach for the next two weeks. I couldn't think about myself."
Baker said the bag has gone with her to many subsequent hospital visits and has been especially helpful during middle-of-the-night emergency trips brought on by a sudden fever.
"We used the bag about 60 times when staying overnight in the hospital, but I bet we've used it close to 100 times including the trips we made to the hospital to check on a fever," she said. "The bag removed such a burden for me " the burden of needing to think of myself when all I could think about was my sick child."
Each bag the fund provides contains the following items: shampoo, conditioner, hair brush, pony tail holders, lotion, disposable razors, body wash, deodorant for dad, deodorant for mom, toothpaste, three toothbrushes, dental floss, a finger nail file, nail clippers, tweezers, small Tums, small Tylenol, lip balm, small feminine products, steno sized notebooks, Post-it notes, pens, highlighters, gum and/or mints, a deck of cards, gallon-sized plastic bags, quart-sized plastic bags, snack-sized plastic bags and miscellaneous coupons as they are donated.
Six to eight new cases are diagnosed each month at Children's Hospital, and the fund tries to provide 10 bags per month. The fund always is looking for item donations and encourages organizations to consider providing a year's worth of one particular item if they are able.
"I know it seems like a bunch of little stuff in the bags, but it adds up," Baker said. "Each bag filled by a group is one that our fund does not need to purchase, and that money can be used to directly help a family."
She said the fund also assists families on a case-by-case basis, with cases referred through the oncology department social workers.
The fund also supports families through gas card donations, distributed by the social workers. Baker said families travel hours to Children's Hospital and often make the trip numerous times each month.
"There is no oncology floor at the Children's in West Virginia, so those kids come here," she said. "We also see kids from Erie and Altoona. This is the nearest facility for them."
Baker said she and her family are blessed to be surrounded by people who support them and the fund, helping to plan fund-raisers and looking for ways to spread the word about what they have to offer.
The fund sponsored their annual Footsteps in Faith race in August, and the fund has been selected as a registered charity for the Dick's Sporting Goods Pittsburgh Marathon. Through the program, people can raise money for the fund while participating in the marathon.
"The goodness and the growth that has occurred through this illness sometimes takes my breath away," Baker said. "The power of people coming together for a common good " to help families living through the darkest time of their lives " is so powerful, and I am honored to be a part of it."
Genre is still in remission and continues to receive chemotherapy treatments, which will last through September 2012, just after his 12th birthday. Baker said he is "strong, growing and feeling great" " and still using his DS to get him through many treatments.
"I never thought that it would get this big," Genre said of seeing his idea grow into what it has become today. "I think it's great that all the families are getting some help."
For more information on Genre's Kids with Cancer Fund, including the "To Go Bag" program and the Dick's Sporting Goods Pittsburgh Marathon, go to the website www.genreskidswithcancerfund.com.