Finding a Community Through Childhood Cancer
Finding a Community Through Childhood Cancer
Elizabeth and her family were beginning a new chapter in life when they relocated to Reno for her dad’s new job. Little did they know that only days after they moved to the Biggest Little City, their story would include childhood cancer. Their belongings were still tucked away in boxes when they received the news.
The day Elizabeth flew into town, her parents took her to a local Urgent Care due to unexplained fatigue, soreness, and a fever. Everything was new, unknown, and they did not have the information they needed. They struggled to find answers about Elizabeth’s health and she wasn’t yet established with a pediatrician.
Eventually, they were able to see a pediatrician and by that afternoon they were meeting with their soon-to-be oncologist. The doctors advised packing an overnight bag in case Elizabeth needed to stay in the hospital for observation. Elizabeth was 3-years-old at the time and with a little sister, Caitlin, in tow.
“The news was devastating for us,” said Erin, Elizabeth’s mom. “We were living in temporary housing, we had no support network, our belongings were all in storage, and my husband was starting a new job the next week, so we didn’t have current health insurance coverage. Life was a mess.”
Northern Nevada Children’s Cancer Foundation (NNCCF) connected with Elizabeth’s doctors and social workers to organize support for her family. By the time Elizabeth’s parents received the news of her diagnosis, NNCCF had already agreed to cover the cost of COBRA to extend their insurance.
“We had literally been diagnosed for just a few minutes before we learned about NNCCF,” said Erin. “The next day as we were in the hospital, NNCCF came to our room with a giant gift bag filled with toys and activities for the kids and gift cards for us. It was like a big hug, right when we needed it.”
The childhood cancer treatment took an emotional, physical, and financial toll on Elizabeth and her family. Her parents constantly worried whenever she had a fever and expressed that it was “hard to be on guard” for a long period of time. Elizabeth’s mom had to forgo her own job search in order to care for Elizabeth during her 26 months of treatment. There were countless days when Elizabeth felt sick or tired, and for months she was in isolation until her immune system became strong enough to interact with the public.
NNCCF was able to assist Elizabeth and her family with the financial and emotional burden of childhood cancer. NNCCF helped not only with medical expenses, and travel costs related to treatment but helped their family feel included in the childhood cancer community.
“They organized social events that we could attend when we were feeling well, and it gave us something fun to look forward to,” said Erin. “And it was so nice to know we were going to be around other people who were just as cautious about germs as we were.”
Elizabeth and her sister enjoyed stopping by the NNCCF office and choosing a book or toy from the toy closet. It was a real “pick-me-up” for the girls. And although their family had experienced guilt from accepting the assistance from NNCCF – they now advise other parents to be ok with accepting help when it is offered.
“It’s so nice to know that extra help is there if things get overwhelming,” said Erin. “I had to learn to be ok with it because sometimes we really just needed it. And I would remind myself that it feels really good to help others, so it was good to let them help.”
With Elizabeth’s cancer treatment complete, Erin still takes precautions regarding her daughter’s health. Elizabeth has regular appointments for blood work every month to make sure she doesn’t relapse, and they want to follow up with psychological care to test for learning disabilities since it is a common side effect from chemo. Elizabeth is waiting on a procedure to remove her port, which was originally scheduled for March but had to be postponed because of COVID-19.
Elizabeth’s bell-ringing ceremony and end-of-treatment party were also canceled because of the virus. Her family had invited family and friends from all over the country to celebrate, and they even rented out a trampoline park for their party. While it was devastating for the family to cancel the symbolic ceremony for Elizabeth, they were used to canceling exciting plans last minute because of health concerns. Erin was still determined to celebrate her daughter’s big accomplishment and decided to organize a surprise end-of-treatment parade where people could come and honor Elizabeth in a safe, social-distancing setting.
“It was so special to see all the support and it gave us the closure we needed,” Erin said.
Family, friends, NNCCF staff, Elizabeth’s healthcare team, and many other supporters arrived to drive down their street in decorated cars and blast music. Elizabeth’s family found their support network in the Reno community – and every supporter played an essential role in helping Elizabeth during her cancer journey. The parade was not only to celebrate Elizabeth, but it was an opportunity for her parents to say thank you to everyone who helped them battle childhood cancer.
Allison Kibbe, NNCCF Marketing Intern