As we entered October, everyone knew what the pink ribbon stood for, but how many were aware of what September was? September is National Childhood Cancer Awareness Month and the ribbon for kids with cancer is gold. If you had asked me 3 years ago what September was and the color of the childhood cancer ribbon I would not have known. All that changed for me and my family on February 22, 2008. That was the day our journey began. That day my son, Zach, had been to the doctor for a cold and the doctor found a mass in his belly that should not have been there. Immediately there was an ultrasound and calls to doctors at Duke Children’s Hospital.
That following Monday morning I sat with my family in a waiting room at Duke and was told the unthinkable – Zach had a grapefruit size mass and the doctors believe it is a cancer called Neuroblastoma. What is neuroblastoma? We had never heard of this disease, yet it is the most common cancer found in infants and can be detected by a simple urine test. Zach had Stage 3, intermediate risk neuroblastoma. There are only 4 stages and none of them have very good statistics. About 700 children are diagnosed with neuroblastoma in the United States each year and it has the lowest survival rates of all pediatric cancers. I decided that first day that Zach was not a statistic and would not allow anyone to treat him like one.
Neuroblastoma is a solid tumor cancer that begins in the nerve tissue of the neck, chest, abdomen, or pelvis but usually originates in the abdomen in the tissue of the adrenal gland and normally affects children under 5 years of age. What’s really scary is Zach’s tumor was originally felt and x-rayed during a routine well check at 9 months of age. The x-ray missed the tumor completely. Had he not been sick with a cold, his cancer would not have been found until much later.
Zach spent the last week of February having numerous and invasive tests ran to determine more information about his cancer. On March 4, 2008 Zach has his first major surgery to try and remove the tumor. It was unsuccessful because of the sheer size of the mass so the surgeons did biopsies of the tumor and Zach’s bone marrow to ensure the cancer had not spread. Zach also had a double-loomin broviac inserted in his chest in order to receive treatment for his cancer. We received wonderful news after the surgery – Zach’s cancer had not spread and could be treated with chemotherapy and another surgery further down the road. That first surgery was very hard on Zach. He had severe blood loss and needed a red cell transfusion and was being heavily sedated to keep him from feeling the pain and from moving too much.
Zach began his first round of chemo while still in the hospital 5 days after his first surgery. After being released from Duke Children’s Hospital, Zach underwent 3 additional rounds of chemo as an outpatient at the Valvano Day Hospital, inside Duke Children’s. Chemotherapy was hard on Zach and it zapped most of his energy. However, he still managed to play and flash a grin most days. Those grins are what got us through that difficult time.
One month after finishing treatment, Zach had his second major surgery in order to remove the tumor. This was a difficult surgery since the tumor had attached itself to most of Zach’s major organs. Zach almost lost his right kidney, along with his right adrenal gland. The surgeons were able to remove 90% of Zach’s tumor and the remaining part has been declared dead tissue. Three months after Zach’s second surgery we were finally able to remove his central line and were not sad to see it go! Having a central line puts a damper on having a fun childhood – there are no baths or showers, no swimming pools, no sand boxes. No anything that could possibly get under the tape that held the line in place and possibly cause infection. Our family threw Zach a great ‘splish splash’ party when this was done to give him lots of bath and pool toys.
Zach is carefully monitored by routine scans and tests to ensure the beast we call neuroblastoma is still gone. Right now our lives are measured by how often we are back at Duke for a scan and testing. We have worked up to going every 6 months, which is an awesome accomplishment considering we started out being there every week. Zach is now a healthy 3 year old and has been cancer free since August 2, 2008. Zach is a SURVIVOR!
The idea of Zach’s Toy Chest was hatched during the hours we spent at the Valvano Day Hospital inside Duke Children’s Hospital. There were a few TV’s with VCR’s, some ratty old magazines and books for the kids and that was it. Once Zach became a cancer patient, we became germinators and the thought of him handling one of those old books was enough to make me jump up and disinfect the whole room. We carried toys for Zach each and every day. However, not all families were able to do this so I decided to try and donate toys that the kids could receive during their treatments and then take home. It is the least my family can do for a center that gave me back my beautiful baby. Our journey has taken us through some pretty awful times and now it has us right where we are supposed to be – helping other families.
Zach’s Toy Chest is a growing non-profit that donates new toys, games, books and other items that help boost the spirits of patients of all ages. A well-stocked toy chest ensures that every patient has a gift for holidays, birthdays and most importantly, a little something to serve as a reward for their courage in fighting cancer. Playing is essential when a child is undergoing difficult treatment or procedures due to cancer. Providing a new game or toy and watching a smile light up a child’s face is a special moment for families, staff and volunteers.
For more information on how you can help these children, please contact Holly Schwab at 702-439-9394 or email firstname.lastname@example.org. Please also take some time and have a peek at our website, www.zachstoychest.org We have fund raisers all year long to help complete our mission.
FIGHTING CANCER ONE TOY AT A TIME!