Nick’s House Stories: The Camp Family

By: Jennifer Hoffman

“My daughter said it feels like home. She is happy here and she isn’t in a hospital bed or a hotel room. She can move around and I think that your attitude about it makes a world of difference in fighting this disease,” said Jillian Camp. 

 

When a family is hit with the news of a cancer diagnosis, it rocks their whole world. For the last five years, the Camp family from north Texas knows this feeling all too well. Their courageous little girl Lily, was diagnosed with retinoblastoma when she was 8 months old. “She was born with a genetic mutation which causes tumors to develop in her eyes. I first noticed it when the light hit her pupils at a certain angle, I could see a white foggy spot in the middle,” recalled Jillian, Lily’s mother.

Jillian and her husband Jacob immediately took their daughter to Children’s Medical in Dallas. Doctors recommended removal of her left eye because it was filled with tumors and had already lost vision. From there they treated her right eye with 4 rounds of systemic chemo and Lily was deemed cancer free. For the next three years, it would be on and off cancer treatment and remission. The Camp’s were able to regain some normalcy until the cancer revved up again and returned in her right eye.

“We were told the world’s best ophthalmologist is in Philadelphia,” Jillian said. So the Camp’s did what any parent would do: they packed their bags and travelled over 1,200 miles to Philadelphia in the pursuit of life saving cancer treatment for their only child. 

“We took Lily to see Dr. Carol Shields at the Wills Eye Hospital. There they had procedures that allowed them to give Lilly highly concentrated chemotherapy, but localized to just her eye,“ said Jillian. For the next two years Lily would undergo treatment at CHOP and have access to the best possible treatment for her type of cancer. The dreaded cycle of remission and recurrence plagued the Camp family, until spring of 2020. 

This time Lily’s cancer returned in a much more aggressive way. “Lilly’s cancer had exited her eye through her bloodstream and metastasized in her bones and bone marrow. There aren’t many metastatic retinoblastoma specialists in the country, but Philly has one,” recalled Jillian. 

The Camps again packed their bags and headed towards Philadelphia, but this time was much different than their last stop in the City of Brotherly Love. Lily could not fly due to the pressure in her head from the tumors, and the COVID-19 pandemic added stress to an already terrifying and uncertain situation. 

The one thing that relieved some of the stress during their stay this time around would be their new short-term home, at Nick’s House. “I really don’t know what we would have done, we would have spent thousands of dollars in a hotel so we are just so grateful for HEADstrong and Nick’s House,” Jillian said. 

For the next few months the family will call Nick’s House their home while Lily undergoes several rounds of chemotherapy and a stem cell transplant. “She gets chemo every 3 weeks, and weekly checkups. She finished her first round and will start her second round the first week of July. If the plan goes accordingly, there is 4 rounds of chemo and then they do a complete stem cell transplant on her, when she doesn’t have any stem cells in her they will do another heavy chemo dosage and then they will inject her healthy stem cells in her,” Jillian explained.

 Jillian is a teacher and her husband Jacob is a personal trainer, who has been training clients virtually from the basement of Nick’s House. The family is able to feel normal while at the house and try to keep their routine as normal as possible. “Lily understands in kid ways, she knows she has some boo-boos. We introduced the word cancer to her this year, as this is the first time it spread elsewhere,” said Jillian. 

A cancer diagnosis is never easy nor is it the news that any parent wants to hear about their child. For the Camp’s they’ve chosen to find the silver lining in their situation, despite how difficult it is. “It’s brought us closer together as a family, it’s strengthened our faith and given us lots of perspective and gratefulness for the life we have,” Jillian stated.

“She’s my hero for sure.”