A Will to be Well: Local Wish-Fulfillment Organizations Shine Some Light into the Lives of Childhood Cancer Patients
Written by Elisabeth Warrick
To look at him, you’d never know. Will Abernathy has bouncy blonde curls, big blue eyes and as much energy as any average four year old, possibly even more. But Will has to deal with something most kids his age don’t: neuroblastoma, a cancer that, according to the Mayo Clinic’s Web site, develops in the nerve cells and occurs most often in children under 5 years old.
In the fall of 2010, Will appeared to be a completely healthy toddler. Then he began showing signs of leg pain. Thinking that he had perhaps pulled a muscle, Will’s mother took him to the doctor’s office where, even after a thorough examination, they couldn’t find anything wrong with him.
A few weeks later, Will began vomiting regularly. His parents, Melody and Don, made several trips to the emergency room and Will was eventually admitted to the hospital. When his symptoms did not improve, the doctors were forced to investigate further. A series of x-rays revealed a tumor on his left adrenal gland. This boy, who previously had only made “well visits” to his pediatrician, was diagnosed with Stage IV cancer. The primary tumor on his adrenal gland was revealed to have spread throughout his bones, his arms, his legs, the back of his spine and had started to form another tumor on the back of his skull. They started treatment the next day.
Following his diagnosis in November 2010, Will has undergone six rounds of chemotherapy at Children’s Healthcare of Atlanta, in addition to a tumor resection on his left adrenal gland, a round of outpatient chemo, and numerous ER admissions for fever and blood and platelet transfusions. Although this is standard procedure for most neuroblastoma patients, and the next step is radiation, Will’s body did not respond as expected. From then on, his treatment would be determined by the medical studies in which his parents enrolled him.
First, Will visited The Children’s Hospital of Philadelphia (CHOP) for two rounds of MIBG treatment, which the CHOP Web site describes as an injection of a radioactive chemical in combination with a compound that selectively seeks out cancer cells. After the second round, Will’s doctor recommended taking an experimental “ALK inhibitor” drug.
Since September of 2011, he’s been taking this drug (10 pills a day), and outwardly has seemed very healthy. But in May of this year, the doctors at Children’s Healthcare of Atlanta determined that Will does show signs of additional cancerous growth, so he’s discontinuing that treatment and has been enrolled in a new study in Michigan.
Melody said that since Will began these experimental drugs last fall, his quality of life has risen dramatically. The drugs he was taking caused minimal side effects and she and her husband want to enroll Will in a new treatment program that will “let him go ahead and have the same kind of lifestyle that he’s having right now.” Will may still have cancer, but “he goes to preschool, he goes to church, he takes swim lessons, karate, he’s in gymnastics — there are no restrictions on anything he does,” Melody said.
Because Will has been feeling so well, his family has been trying to fit in as much fun for him as they can, both through wish-fulfillment organizations and in their everyday lives.
“We do the movies, we go to the pool, we do just anything and everything we can think of to do to keep him entertained and happy while he is well and able,” Melody said.
Just then, Will jumped in with a silly dance and asked when they will be leaving for the pool. “I can go under water now!” Will proudly boasted. “I can go all the way to the bottom!”
“Everything we do is based around Will and making him happy,” his mom said.
It’s a sentiment shared by many.
Making Memories One Wish at a Time
Parents of kids like Will want to take advantage when their children are feeling well to make those happy memories. That’s where national organizations like Make-A-Wish and locally based groups such as Kingdom Kids can really help out.
Make-a-Wish, perhaps the best known wish-fulfillment organization, was founded in 1980 in Phoenix, Ariz., when volunteers banded together to grant the wish of 7-year-old Chris Greicius, who was battling leukemia and wished to be a police officer, said Fabiola Charles, Vice President of Communications and External Affairs of Make-A-Wish Georgia & Alabama. A close family friend heard about Chris’ wish, so he and his law enforcement buddies planned an amazing day for him. They took Chris on a helicopter ride to the Department of Public Safety Headquarters, where he was sworn in as the first — and only — honorary state trooper. The volunteers who helped make his dreams come true were so affected by the impact that it had, they were compelled to create similar experiences for other children battling life-threatening illnesses. Make-A-Wish Georgia was founded in 1995, and since then, they’ve been able to affect the lives of more than 5,000 children.
“Most of our wishes fall into four categories: I wish to have; I wish to be; I wish to go; or I wish to meet,” Charles said. “Some of our children wish for laptop computers that they can use to entertain themselves while they are in the hospital facing long and constant treatments, like chemotherapy or blood transfusions. Other children wish to transform themselves, if only for a day. We’ve had children wish to be everything from police officers to princesses to recording artists! And while many children wish to meet their favorite celebrities, our most popular wish is a trip to Disney.”
One example of a child helped by Make-A-Wish is 6-year-old Isabelle Conring, better known as “Belle,” who suffers from Gorham’s disease, a rare medical condition that causes the bones in the body to virtually disappear. With a name like Belle, wishing to be a princess just comes naturally and on May of this year, Make-A-Wish created a fairy-tale afternoon to remember. Bedecked in a gown to fit the occasion, Belle arrived at her princess party in a horse-drawn carriage, as trumpeters announced her arrival and ballerinas put on a special performance.
Meanwhile, 7-year-old Darrien Salter, who suffers from neurofibromatosis (tumors that grow along nerves in the body or on/under the skin), fulfilled his wish of being a police officer. He arrived at the Smyrna Police Department in his Hummer limo, put on his uniform, was sworn in by the Mayor, attended his shift meeting and then set off to protect and to serve.
And after pronouncing her wish to be a chef, Ashlee Cole, a 10-year-old diagnosed with a brain tumor, spent an entire day with Head Chef John Oechsner at the Art Institute of Atlanta Creations Kitchen & Restaurant. Reveling in the cooking experience of a lifetime, she donned a toque and chef clothes as she executed her menu and served a table full of proud supporters.
A Kingdom of Kindness
Kingdom Kids, a similar, more homegrown organization, was founded in Cumming in 2009. Co-founder Kevin Ford described the organization as “a local non-profit founded with the intention to help children and families in our local community who need a bright moment, or a wish filled to spread some joy into their otherwise challenge-filled days.”
Although Kingdom Kids is a smaller organization, staffed solely by volunteers, 100 percent of incoming donations go to helping families.
Jodi Ford, Kingdom Kids’ Vice President of Public Relations and Communications, said that the organization makes a point to fulfill wishes of all sizes. They’ve granted big trip-based wishes to places like Wimbledon, Disney World, California and New York City, as well as a trip to meet Carrie Underwood and Scotty McCreery in Nashville.
“Sometimes, though, the wish may be as simple as providing a child’s last family portrait, a recorder for capturing a child’s voice, or even a headstone for a mother to bury her child,” she said.
Both Make-A-Wish and Kingdom Kids tout the belief that every child facing a life-threatening medical condition deserves the transformational experience that a wish can provide.
Will was able to benefit from both the Make-A-Wish and Kingdom Kids organizations. In the summer of 2011, Kingdom Kids sponsored a beach trip for Will and his family, and they were able to travel together again when Make-A-Wish sponsored a Disney Cruise to the Bahamas.
Will said he liked it because all the characters were on board. “Pinocchio was there! Tinkerbell! Minnie Mouse!”
He also said he had so much fun he is ready to go back.
To get updates on Will’s progress, you can create an account and subscribe to his CarePage.
For More Information
The second annual Will to Win 5K, benefitting the family of Will Abernathy, will take place on Nov. 3. To register, please visit willtowin5k.blogspot.com.
You can volunteer your time, money, even your airline miles to help support the wish fulfillment organization of your choice. Find out more by going to the organizational Web sites below:
Ask a Doctor
Dr. Todd Cooper, Oncologist and Researcher with Aflac Cancer Center of Children’s Healthcare of Atlanta, answered a few questions we had concerning childhood cancers.
What are the typical forms of childhood cancers and how rare are they?
Cancers in children are relatively uncommon, with about 1 in 7,000 kids being diagnosed before 15 years of age. The most common forms are acute lymphoblastic leukemia (ALL) and brain tumors. Other cancers of childhood include Hodgkin’s Lymphoma, neuroblastoma, tumors of the bone (osteosarcoma or ewings sarcoma), or tumors of the muscle (rhabdomyosarcoma).
What symptoms should parents watch out for?
Leukemia is a disease of the bone marrow, [which is] where our blood cells are born. White cells fight infection, red cells are important for carrying oxygen around the body, and platelets help to prevent and control bleeding. So, the most common findings in leukemia are infection, fatigue, and bruising along with easy bleeding. Children with leukemia often come to the doctor looking very pale, have bruises all over the body, and may have fever. Their bones might hurt and young kids might be limping or refuse to walk. Sometimes, children have very swollen glands or lymph nodes in different areas on their body.
Children with brain tumors usually present very differently, and the way they present depends on their age and location and size of the tumor. The symptoms might be very non-specific such as new onset of clumsiness, fatigue, poor school performance or personality changes. Headaches and vomiting are very common. Children can have acute visual changes if the tumor is located in the optic pathway. Other symptoms may be very dramatic, such as seizures, paralysis of portions of the body, or blindness.
When should parents take their child to a specialist?
Most often, children who present these symptoms make their way to the pediatrician first. Pediatricians are highly trained to recognize the symptoms of childhood cancer. If you go to the pediatrician with these types of symptoms, they will often ask you to have your blood drawn as a screen to see if you have leukemia. If your child is extremely ill, you should go to the emergency room. It is very rare for us to see a child with cancer before a primary care or emergency room physician. However, for the treatment of childhood cancer, you should definitely seek care with a specialist. Most pediatric oncologists are located at large children’s hospitals or treatment centers. These doctors are highly trained to deal in all aspects of cancer and blood disorders.
Are there any early detection methods for cancer in children?
For the most part, children are not regularly screened for cancer. It is not necessary to have frequent x-rays or blood draws on children who are not sick. However, parents should always be vigilant and take their children to the pediatrician if they think something is wrong. I know that I’ve been trained that mom (and sometimes dad) always knows best and to always listen carefully to their concerns.