ASK and receive
Families in crisis turn to childhood cancer support group
Jonathan Pilch had never had a sick day in his life.
So in January 2008, when he began to act grumpy and out-of-sorts, his mother – who had observed similar behavior in her two older sons – assumed the two-year-old was getting his molars.
When several days went by and Jonathan was still too listless to play, Pam Pilch suspected something more serious was wrong. But nothing could have prepared her for the response when she took Jonathan to the doctor.
"The pediatrician took one look at him," Pam recalls, "and said, 'He is very, very sick. I'm going to call the rescue squad.’”
The next day, she and her husband were told that Jonathan had acute lymphoblastic leukemia (ALL).
"I can't tell you what a shock it is to learn your child has cancer," Pilch says today. "It was really scary. . . We had no idea what to do."
Fortunately, there were parents from ASK who did.
At Every Turn
A Richmond nonprofit that provides support for children with cancer and their families, ASK was founded in 1975 by a small group of parents of pediatric cancer patients at Medical College of Virginia.
From its modest beginnings arranging small parent gatherings and providing resources such as books, toys and games for children in treatment, ASK has grown today into an organization that steps in at diagnosis and guides families through the full range of non-clinical treatment.
"They've personally been there at every turn," says Pilch. "They just shepherd us through everything. The social worker helped us handle the insurance. They file for financial aid when you can't figure out the paperwork. They bring gift bags to the hospital. They remember the kids' birthdays; they remember the siblings. They throw a huge Christmas party.
"People from ASK knew what I needed before I needed it."
On the Front Line
In the years since 1975, when childhood cancer was virtually a death sentence and much of ASK's focus was on bereavement support, survival rates have improved dramatically. Now the organization's focus, happily, has shifted to helping families with the challenges of long-term survival.
Among those challenges are dealing with the effects of toxic chemicals used in treatment, which can lead to cognitive impairment for survivors.
"ASK does a lot with helping children in school," says Pilch, adding that emergency support is another vital mission. Parents in financial difficulty who have an overdue bill or are being kicked out of their apartment have access to an email list of contacts ready to locate temporary assistance.
"They're on the front line," says Pilch, "with financial, emotional, academic and social support."
So when ASK holds its annual fundraiser April 30 – a family fun walk and 5k at Short Pump Town Center -- the Pilch family not only plans to be in attendance, but to show up with as many friends and Wellesley neighbors as they can possibly recruit.
And Pam Pilch is happy to report that five-year-old Jonathan – who received his last dose of chemotherapy on March 27 – will blend right into the crowd.
"If you saw my three kids," says Pilch, "you would not be able to guess which one has been sick."
For the Price family of Henrico, ASK has been a lifeline as well – offering not only financial and emotional support, but a chance for 14-year-old Nile to rebuild his strength and self-esteem.
Diagnosed with sickle cell anemia at birth, Nile spent months in the hospital at the age of 12, enduring chemotherapy and suffering severe pain before obtaining the bone marrow transplant he needed to survive.
In the year before the transplant, he had become too weak to go to school – even too weak to play. In his first post-transplant attempt at exercising, he could barely manage ten minutes of walking on a treadmill. But since then, the freshman at Douglas Freeman High School has come a long way – thanks to a program called Moving Forward.
A partnership between ASK and the YMCA of Greater Richmond, Moving Forward provides participants with a Y family membership, a free personal trainer, and cooking classes and a dietician throughout the year.
The weekly workouts at John Rolfe YMCA – which often include his brothers and mother Deborah as well –have not only helped Nile to regain his strength, but also to build his confidence. On March 3, in fact, Nile spoke at the first Moving Forward graduation program.
In addition, the group workouts have brought the family closer together – and resulted in a 20-pound weight loss for Deborah.
'I'm Not Alone'
Two months ago, the Price family traveled to Houston to meet the woman who donated the marrow that saved Nile's life.
"She's 47 and a mother of two," says Deborah Price. "One son was born with CHARGE Syndrome and is blind and deaf, so she understands the in-and-out-of-the-hospital [lifestyle].
"Our families just jelled," adds Price. "She's now 'Auntie Laura.' She says, 'Now I have three sons!'"
Although Nile was attending half days at Freeman for awhile, he recently suffered a setback due to lung damage from the sickle cell, and is again doing lessons with a homebound teacher.
Being at home would be a lot harder, says his mother, if not for the friendships Nile has forged through ASK. "It's helped him meet more kids," she says. "[He can say] 'I'm definitely not alone; there are other teenagers I can connect with.' That has meant a lot to him."
Recalling that she first turned to ASK for financial aid ("after Nile came home from the hospital with a bag of meds [costing] five- or six-hundred dollars"), Deborah Price notes that the group offers much more than monetary support, and that she looks forward to enrolling in a support group for caregivers.
"The thing I like most [about ASK] is that they are there for the child," says Price.
"But they help everyone in the family."
The ASK Family Fun Walk and 5K will be held April 30 at the Short Pump Town Center. For details, visit http://askwalk.org.
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