CureSearch for Children's Cancer funds and supportstargeted and innovative children's cancer research with measurableresults, and is the authoritative source of information and resourcesfor all those affected by children's cancer.
Source: Fox News St. Louis
When a St. Charles County mother lost her son to cancer in 2009, the grief led her to a fight. She discovered a surprisingly low level of funding for pediatric cancer research, and she's determined to change things. It is not as much therapy as it habit now when Jeanine Aubuchon writes in her journal.
"Exercised, weighed, four pounds to lose," reads one entry.
"Just a typical day without you," reads another.
But some days the entries are not about the everyday happenings. They are about the everyday pain.
"Today as I look out, there are no leaves, allowing me a full view of the beautiful sky and sun," she wrote in December. It was one of those days that winter trees offered no barrier between earth and sky, making the heavens look close enough to touch. But at that same moment, heaven felt so far out of reach.
"Your headstone is placed," continues the entry. "I went to see it today after they called and told me it was in."
"I walked up to the headstone, hesitating like I did when I first approached you at your wake. I had to touch it, just like I had to touch your hands, and yes the headstone was cold, like your hads were that day. I cried as I ran my fingers over each word."
Jeanine's journal is full of letters to her son.
"They're all to CJ," she says. "At least every other night I write to him like I'm talking to him."
CJ battled two cancers: osteosarcoma and Ewing's. He battled his insurance company, too. The firm denied access to an experimental drug which doctors believed would buy him more time. When he finally won coverage, it was too late. CJ turned 19 in April of 2009. He died in May.
Jeanine's journal is not CJ's legacy. His legacy is not about words. It is about fight.
"People need to know that kids are dying," she says.
When CJ passed away, Jeanine began doing research and did not like what she found. The U.S. Government spends far less money researching pediatric cancer than it does researching cancers more commonly found in adults. The National Cancer Institute gave $172 million to pediatric cancer research in 2007, which is the most recent expenditures reported, versus $572 million to breast cancer, $296 million to prostate, and $258 for colon. And though members of congress passed a landmark childhood cancer act in 2008, promising an additional $150 million over five years, they've only actually given $5 million.
"Pediatric cancer research gets a fraction of what adult cancers get," says CureSeach President and CEO John Lehr. "The reason why it's been this way is there hasn't been a national movement in this country like there has been for breast cancer with the Susan G. Komen foundation did to raise awareeness for breast cancer"
John Lehr wants his Washington DC based non profit CureSearch to do for pediatric cancer what the pink ribbon did for breast cancer. And Jeanine could be his answer. She is now holding almost monthly fundraisers for pediatric cancer charities. And she will go to congress in the spring with CureSearch to lobby for more funding.
"You would've thought somebody was taking care of these kids and they're really not," she says.
Despite having fundraisers to keep her focused, the daily struggle continues. "Everything with my sons passing has been a choice. You get up or you don't. And I'm not lying there are days I still don't want to get up, but I do," she says.
And now her days include a stop at a Maryland Heights gym.
"He really wanted me to get in shape," she says of CJ.
She set a goal: lose 50 pounds by her 50th birthday, and each pound lost would raise money for a childhood cancer charity. ((MORE))
"And I actually watched her at times struggle, at times just far exceed her expectations, and at times, just absolutely become that driving force that CJ is inside of her," says Coach Hammer of HammerBodies. "She's not going to stop. She isn't going to stop, forever."
HammerBodies donated the workouts, CJ provided the resolve, and by her 50th birthday, she made it.
"50 pounds!" she says, smiling. "I even drink soy milk now!"
But when she wrote in her journal to CJ about her accomplishment, there was not as much joy. "Well, don't you just love it," she wrote. "I start my journal entries 'Well.' Well, I weighed in and had final numbers taken at HammerBodies. I made the 50 pound loss."
"But I was listening to the song Borrowed Angels the other day and I started to cry while I exercised. I could see you running along my right side saying, 'Mom, come on hurry up,' and you were looking back at me and reaching your hand back."
"I was so happy with the image but so sad it was only temporary," Jeanine wrote.
It was one of those moments that heaven was out of reach. But the fight in her heart; the fight for CJ is well within her grasp.
"This is the beginning of my journey," she says. "The best thing I ever did in my life was raise my children. But now its my journey. I don't like doing it without my son. But I think it's what keeps me going."
- Teresa Woodard
Christine BorkEmail Christine(240) 235-2208