Maureen Humphrey lost her child to cancer, but not in the traditional sense.
Humphrey was pregnant in June of 2001 when she learned that she had clear cell adenocarcinoma, a rare and aggressive cervical cancer that necessitated a radical hysterectomy as well as the removal of 28 lymph nodes.
“No one ever expects that cancer or illness will happen to them, and we certainly felt the same way,” said Susan Bertrand of Baldwinsville, Humphrey’s older sister. “Maureen’s cancer diagnosis was a shock, but worse than the diagnosis was the grief she felt knowing she was going to lose her unborn child and never again have the chance to conceive or carry her own child again.”
But the surgery was successful, and with the promise of adopting a baby from Colombia on the horizon and her cancer in remission, Humphrey began to hope again —until about six months later, when she started experiencing pain in her lower back. Tests revealed that the cancer had returned. Despite aggressive treatments at Sloan-Kettering in New York City, Maureen Humphrey lost her battle with cancer on Jan. 19, 2003, at the age of 31.
“Though she was not a ‘child,’ she was my parents’ child, and there is no greater loss,” Bertrand said.
Bertrand, like countless others, decided to channel her grief into helping others facing a cancer diagnosis; she started the Maureen’s Hope Foundation shortly after her sister’s death.
“I always say that my vision of hope is not just about achieving a desired outcome, it’s about the journey, and we try to make that journey a little easier for others,” Bertrand said. “The foundation has been a healing outlet and a way to give back for both my family and myself.”
Maureen’s Hope is one of numerous organizations that seeks to help families facing a cancer diagnosis. The nonprofit relies on donations and volunteer labor to cater to the needs of families, from providing a house cleaning service to help with yard work to assistance with fundraisers.
“It is a difficult time for not only the patient, but for the entire family,” Bertrand said. “There are so many different needs families have, and we try to cater to those personal needs.”
The foundation also has specific programs for children. The most popular is the Beads of Courage program, which launched in February of 2010 at Upstate Golisano Children’s Hospital. Each child is given a length of string and beads that spell out his or her first name. Colorful beads, each representing a different treatment milestone, are then given to the child by his or her physician to add to their collection throughout treatment. The initiative helps to decrease illness related stress, increase positive coping strategies, helps children find meaning in illness and restore a sense of self in children coping with serious illness. The program also provides something tangible the child can use to tell about their experience during treatment and after.
On the Maureen’s Hope website, mom Amy O’Bryan extolled the virtues of the program.
“My son Andrew was diagnosed with osteosarcoma and lost his leg to the cancer. He loved the Beads of Courage Program,” O’Bryan wrote. “Each bead represented a part of his journey and it gave him something special to look forward to and an outlet to help tell his story.”
Maureen’s Hope also helps children celebrate Easter with Spring Baskets delivered on Easter morning.
“People do so much during the Christmas season that we try to offer some smiles and support during other special times of the year,” Bertrand said.
Many of the initiatives are carried out by the Maureen’s Hope Youth Club, made up of about 80 ninth- through 12th-graders who fulfill whatever need exists among cancer patients.
“Watching these young men and women do for other children has been some of my most heartwarming moments,” Bertrand said. “Kindness from a stranger can mean so much.”
Making dreams come true
Indeed, it’s often everyday volunteers who make the biggest difference in the lives of cancer patients. The Dream Factory is an all-volunteer organization — it has just three full-time and one part-time paid staff members at its national headquarters in Louisville, Ky. — with 38 chapters nationwide, the newest being in the Syracuse area.
“We are just over a year old — we became an official chapter in June of 2012 — so we have a lot of work to do to raise awareness both among the families who have a child suffering from a critical or chronic illness and among the community members who are willing to help us make those dreams possible,” said Dream Factory publicity chair Erin Wisneski of Baldwinsville. “The good news is people are beginning to recognize our name.”
That is good news, indeed, since most of the money that funds the dreams is local; Wisneski said some 91 percent of the funds raised locally stays local, and each chapter operates independently. The nonprofit’s major fundraiser, the Kick for Kids Kickball Tournament, will take place Saturday, Aug. 17, at the Syracuse Sports Association Kickball Fields at 7192 Oswego Road in Liverpool. Registration begins at 9:30 a.m.; games start at 10 a.m. The tournament features food, games and entertainment for teams and spectators to enjoy in between contests as well as raffles and a silent auction. The cost is $25 per person or $275 for an entire team of 11 people (each team needs a minimum of four girls and four guys).Visit syracusesportsassociation.com for more information. The tournament funds efforts to fulfill the dreams of local kids, like 17-year-old Sarah, who wants to meet Liam Neeson.
The Dream Factory doesn’t just serve kids with cancer; any child with a critical or chronic illness is eligible to have their wish granted. Locally, the nonprofit has fulfilled the dreams of a 9-year-old Emma Louise of Liverpool, who is living with Type I diabetes with hypoglycemic unawareness; the Dream Factory sent her and her family to Give Kids the World, where they were able to visit Disney World, Universal Studios and other Orlando-area theme parks. Nationwide, the 30-year-old Dream Factory has granted more than 25,000 dreams to children ages 3 to 18.
And kids don’t have to have a life-threatening illness to be served by the Dream Factory.
“We recognize that a child living with cerebral palsy, cystic fibrosis, spina bifida or any number of autoimmune deficiencies still lead a challenging life,” Wisneski said. “These children spend numerous hours receiving treatments, visiting doctors, staying at hospitals and sitting on the sidelines watching their friends run past. In addition, the organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain. We strive to provide hope and relief from the trauma and corresponding stress and depression that both the children and their families can endure on a day-to-day basis. Doctors agree that providing a dream can improve the quality of life for these children.”
In order to qualify to have a dream granted by the Dream Factory, children between the ages of 3 and 18 must be able to communicate their dream to a representative of the nonprofit. It must be the child’s own, not one of a parent, guardian or other concerned party. The child’s illness must be verified by his or her primary physician, and they cannot have had a request fulfilled by any other wish-granting organization. If a family is interested in learning more, they can request an application through email (firstname.lastname@example.org) or they can visit dreamfactorysyracuse.org.
And once that dream is granted, the child will have friends for life.
“Dream kids are always part of the Dream Factory family,” Wisneski said. “Once a child is granted a dream by the Dream Factory, local chapters plan special events throughout the year that our dream kids attend like our recent shave event — while we had amazing people there who had raised funds for our organization to have their heads shaved, we had free activities, refreshments and entertainment for our dream kids and other youth to enjoy. As we continue to grow locally, we plan to do more of these types of events.”
Such support is critical to helping critically ill children heal and to supporting their families.
“I think it is important for a community to come together and support its members in any way,” Wisneski said. “Whether through providing a reprieve for a family struggling with a child’s illness or through other organizations that are helping individuals, it is imperative that we look at our neighbors as an extended family and reach out when we see someone is in need.”
A lot of kids with cancer dream about being “normal” again, about not being different and feeling isolated from their friends by their diagnosis. Camp Good Days and Special Times provides them with that experience.
“During their experiences at Camp Good Days, the children, adults and families we serve are able to meet others who truly understand what they’re going through,” said Claire McKenny, regional director for Camp Good Days. “I think this is the most important thing they get out of camp. It provides an incredible amount of hope and healing of a different kind, and only those who have dealt with a diagnosis can truly understand. It gives a chance for kids to be kids, as they should be, despite everything their families may be facing, and it gives all of our participants a chance to just get away for a moment, and create some wonderful memories and friendships.”
The camp was founded in 1979 by Gary Mervis after he watched his daughter, Teddi, suffer from the loneliness and isolation of being the only child in her group of friends dealing with cancer. Mervis took Teddi and 60 other children with cancer from Rochester, Buffalo and Syracuse to a camp he rented in the Adirondacks, and he kept the camp going after Teddi passed away. Camp Good Days was the fourth organization of its kind in the U.S., and the first to be started by a layperson. Many of the programs and services the organization provides have been used as models for other cancer treatment centers and organizations around the world. Since its inception, the Camp Good Days has served more than 43,000 campers from 22 states and 28 foreign countries.
Camp Good Days now hosts summer overnight camping programs at its recreational facility on 13 and a half acres on the shores of Keuka Lake, as well as year-round support and activities at its offices in Rochester, Buffalo, the Southern Tier and Central New York. Local programs in Central New York include the ‘Cuse Kids Club, a monthly activity group for children ages 4 through 17 touched by cancer, and the Sassy Survivors, a monthly activity/support group for women ages 18 and up who have been diagnosed with cancer; both run from September through May. The nonprofit also maintains a day camp each spring for children ages 4 through 7 called Jr. Good Days for any children who qualify for our programs that may be too young for overnight camp. All programs are free of charge.
And they’re not just for kids facing an illness.
“Their siblings can also participate in camp programs and our monthly ‘Cuse Kids Club,” McKenney said. “Children who have parents with cancer can also go to Camp, as well as children who have lost a parent or sibling to cancer. Serving the whole family unit is very important, as it’s not only the child with cancer who is affected. We provide hope and healing to the entire family through our programs.”
Camp Good Days serves about 1,500 campers each year; this summer, the largest group, 80 children, has attended overnight camp at Childhood USA I, a weeklong program for children with a parent diagnosed with cancer. There are separate weeks for children with cancer, children with a parent with cancer, children with a sibling with cancer and children who have lost a family member to cancer. There’s also a weekend retreat for women, men and young adults who have dealt with a diagnosis, as well as a brain tumor family retreat for families in which a member is dealing with a malignant brain tumor. Children at overnight camps enjoy all of the typical camp activities, from boating and fishing on the waterfront to arts and crafts to indoor rock climbing and more. Campers can take advantage of day trips to WonderWorks, Green Lakes and other area attractions. There’s a fully staffed infirmary on-site for any medical emergencies. Registration for summer camps begins in February or March, and applications are accepted throughout the summer.
McKenney said the ability to participate in camp gives campers the chance to regain some of what their illnesses have taken from them.
“I firmly believe that the friendships and memories created at camp translate into healing of the mind and spirit, which helps heal the body as well,” she said. “A positive outlook can work wonders. I believe this makes a significant positive impact on the lives of members of our community.”
You don’t have to be part of a national organization, or even a small nonprofit, to help kids with cancer. You could just be a kid who wants to remember a loved one.
Ryan Gilbert watched his cousin Bianca Bresadola, 7, as she first became sick from osteosarcoma. He and his sister Lauren, as well as Bianca’s twin sister Mia, watched as Bianca fought valiantly against the disease, only to lose the battle on December 3, 2008.
Ryan doesn’t like to talk about his cousin, to whom he was very close. But Ryan, now 14, showed his feelings for her in another way: by collecting boxes of Crayola products, which he donated to Upstate Golisano Children’s Hospital last year.
Ryan first learned about the All Dolled Up Fashion Show last summer. The fundraiser, put on by the Shades of Orange children’s art studio at Drivers Village in Cicero, auctioned off American Girl dolls to raise money for the Upstate Golisano Children’s Hospital Child Life Program. The money raised through the fundraiser would support the Child Life program’s uses art and play therapy initiatives, which led Ryan and his mom, Terri, to the idea of collecting crayons and other Crayola products for the kids at Golisano.
“Being a boy, I wasn’t really into the doll part,” Ryan said. “But seeing what I’ve been through, my cousin died of cancer, I wanted to raise money for [Golisano]. It’s just a good thing to do.”
So Ryan and Terri drafted a letter outlining his plan. They emailed it to friends, family members, Terri’s co-workers and anyone else they could think of that might be willing to donate. Ryan also started texting all of his friends to get them involved.
At first, Ryan’s expectations were relatively low.
“I didn’t expect a lot,” he said. “I didn’t expect a lot until people started telling other people and we actually started getting a lot at a time. I thought people would give one to two boxes at a time. But they started giving me 15 or 16 at a time. I knew we were over 100 the first day.”
In all, Ryan ended up collecting more than 600 boxes of crayons, markers, paints and other Crayola products, which he was able to personally deliver to Golisano.
While 600 boxes seems like a lot of crayons, Golisano will likely go through the boxes quickly; Terri Gilbert said the hospital, while it can wash and reuse some things like markers and paints, has to dispose of used crayons due to the risk of infection and the compromised immune systems of the patients.
“They can’t share,” Terri said. “If the four of them were in a room coloring, we couldn’t give those crayons to someone else when they were done because of all the germs. So they go through a lot of Crayola products up there.”
Ryan, Lauren and Mia would often spend time coloring with Bianca, so Ryan’s efforts hit particularly close to home.
“He understands what it’s like to go through it and what it means to need to have some fun and not think about why they’re there,” Terri said. “It takes their minds off it, not just the patients, but the kids that are with them. I’m really proud of him for doing this.”
“It’s giving love and care for everybody there,” he said. “I know that there’s hope for them. To give them a little fun before some of them pass, just like Bianca.”
This story is part of a five-part series on families facing a pediatric cancer diagnosis. The final installment will focus on what happens when a child goes into remission. If you would like to contribute to this series, please contact Sarah Hall at email@example.com.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.