Support for pediatric cancer families
Parenting a child is an experience like none other, imagine your emotions at their fullest extremes and far exceeding what you thought was your maximum capacity to love. Parenting comes with highs and lows, from the unbelievable, physical exhaustion resulting from a newborn’s sleepless nights to the overwhelming joy of their first smile. When you hold that precious, tiny child in your arms, it is as though they carry your heart with them each and every day. Their emotions become yours, you feel each laugh they laugh and each tear they cry. You never truly know what to expect until you have a child and realize your innate purpose to protect them from any and all pain and suffering. A child brings life’s greatest joys and challenges all wrapped up in a tiny package. When they look you in the eyes with all of their wonder and innocence and say “I love you” you know that they are worth every bit of the raw and unbridled emotions of parenting. If you could prevent them from catching a cold, falling off their bike and scraping a knee, breaking an arm or even a broken heart, you would. You would take that pain as your own so they wouldn’t have to feel it. But you can’t protect them from everything, and broken bones and hearts are part of life. But what about cancer? How does a parent endure watching their child suffer from the cruelty of cancer and its treatments?
“About 12,060 children in the United States under the age of 15 will be diagnosed with cancer in 2012. Childhood cancer rates have been rising slightly for the past 20 years and cancer is still the second leading cause of death in children younger than 15 years old (after accidents). About 1,340 children are expected to die from cancer in 2012. There are 12 major types of childhood cancers. They are often hard to recognize because the symptoms often overlap with common illnesses or injuries and children often get sick or have bumps or bruises that might mask the early signs of cancer. Parents should be sure that their children have regular check-ups and watch for any unusual signs or symptoms that do not go away. These include: an unusual lump or swelling, unexplained paleness and loss of energy, easy bruising, an ongoing pain in one area of the body, limping, an unexplained fever or illness that doesn’t go away, frequent headaches, often with vomiting, sudden eye or vision changes or sudden unexplained weight loss”, as per ACS.
“Pediatric cancers are very different from the types that develop in adults because unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors. Treatments are chosen for childhood cancers based mainly on the type and stage of the cancer and may include chemotherapy, surgery, radiation therapy, and/or other types of treatment. In many cases, more than one of these treatments is used. This means children treated with chemotherapy and/or radiation therapy may be at increased risk for developing a second primary cancer. Although there are some exceptions, children’s bodies also tend to handle chemotherapy better than adults’ bodies do and are generally able to recover from higher doses of chemotherapy than are adults’ bodies. Using more intensive treatments gives doctors a better chance of treating the cancer effectively, but it can also lead to more short- and long-term side effects. Children who survive cancer need careful attention for the rest of their lives” as per ACS.
Fortunately there are compassionate people, advocates and organizations who want to help and support the pediatric cancer community. One in particular, that’s getting quite a bit of attention in Richmond and Fredericksburg, Virginia, is Fairy Godmother Project.
Fairy Godmother Project
Andie McConnell, founder and mother of three, and friend, Stephanie Johnson, a part-time photographer and mother to five children, formed the Fairy Godmother Project in 2011. FGP began in Fredericksburg, VA fundraising for local families in their community. FGP is now incorporated and awaiting their nonprofit status. Laura Leporati, a Richmond mother of two, wanted to help expand this much needed service to families in her area. In January of 2012, she formed FGP’s second chapter in Richmond, VA to meet the needs of this community as well. Their mission “is to ease the burden of everyday life for local families who have a child in treatment for a form of pediatric cancer”. FGP tries to help with the day to day aspects of their life so that they can concentrate on what really matters: their children. To meet this mission, they provide meals, lawn maintenance and housecleaning, gas cards, haircutting services, and general support. They have also partnered with professional photographers who volunteer their time to photograph FGP families. “We hope that these services can provide comfort to families facing the most difficult of times”, McConnell says. “I watched a woman, who became one of the most important women in my life, go through this, as a mother and it was heartbreaking. Watching a mother as her child faces pediatric cancer is indescribable; the fear, the sadness, the stress, the worry, the guilt and yet the ability to still find joy in life is by far the most moving, inspirational and meaningful experience I have faced” added McConnell.
“Often families affected by pediatric cancer feel isolated and may be afraid to ask for help”, says one parent of a pediatric cancer patient.
McConnell states, “A mother and a father should never outlive their child and because of cancer, 1340 people will this year. No child should have their childhood memories filled with chemo, vomiting, isolation due to potential illness, loss of friendships and being unable to attend schools. The thing many people don’t realize is that even when treatment is over and they go in remission, it isn’t gone. Cancer will always be part of their lives. Those families will forever wonder when or if the cancer will come back. No family should have to live that way but yet each 12,060 new families will because of a cancer diagnosis. Now that I have witnessed what pediatric cancer treatment does to a family financially, emotionally, and physically, I want more people to know, understand and help”.
Lauren, 6 years old, living with A.L.L.
Lauren was diagnosed with Acute Lymphoblastic Leukemia on January 5, 2011. She was a month away from turning 5 when diagnosed and admitted into the hospital for treatment. She spent just over a month in the hospital with many challenges and coming home was the best for her. She continues her treatment at home which includes taking numerous medication daily for two weeks, outpatient clinic once a week, a week break, then repeat. She is scheduled to finish her treatment in February 2013 at age 7.
“While in the hospital, I remember the doctors telling Lauren’s Father and I that we will develop a new normal. We have created a new normal. It is inclusive of increased joy, happiness, fear, laughter, exhaustion, insomnia, giving, love, prayers, support, and friendship. It also involves over 5 prescriptions with many refills, physical therapy, play therapy, work, laundry, art therapy, ER visits, panic, having difficult discussions with my 6 year old about cancer and death, weekly trips to Fairfax for treatment which occasionally involves getting her port accessed, lumbar punctures with chemo, resolving sibling arguments, anxiety, cleaning house, implementing healthier lifestyle changes, etc. My husband and I try to keep life as normal as possible. The Fairy Godmother Project helps us do that. FGP has stepped in and taken care of things like cooking, cleaning and lawn care for our family. This allows us to focus on caring for our sick child and siblings. They have organized our freezers, provided meals, cleaned our house, helped with DMV application for handicap parking, became a liaison to the community, organized our pantry, searched for a dressmaker for Lauren’s kindergarten graduation, provides gas cards and date nights with my husband, and much more. They have our back”. As for advice for other families facing a pediatric cancer diagnosis, Lauren’s mother says, “Breath, take care of yourselves the best you can, seek out resources (there are many), pray, and say yes to any help. FGP, coupled with our family and friends completes the circle of support we need to navigate our daughter’s diagnosis successfully (or the best we can)”.
Be a Richmond Fairy Godmother
FGP and pediatric cancer families in the Richmond community need your support. They need volunteers to help make meals, clean and organize homes, fundraise, and for service providers to donate lawn care and house cleaning. “We are an all volunteer organization at this time, so no funds go toward salaries. The money goes toward gift cards, meals, care packages, cleanings (when not donated) and administrative items (background checking and insurance for our volunteers) that allow us to carry out the services. You don’t have to be personally impacted by pediatric cancer to care about it and want to make a difference”, McConnell added. Laura Leporati, the Richmond coordinator states, “We can find a way for you to contribute to FGP, no matter how much or little time you have or unique your talent or interest is.” A volunteer training is coming up on Tuesday, March 27th at 7pm at the Clover Hill library for anyone interested.