By Jessica Isaacs
In many ways, Joseph Dees is a typical 12-year-old boy. He loves his parents and his siblings — Lee, 15, Bebo, 11, Finley, 9, and Lucy, 6 — and he loves to build things with Legos. He’s also living with a high-grade glioma brain tumor and has undergone three brain surgeries in the past three years.
It’s not his battle with cancer that makes him special, though, but the way that God has equipped him to fight it.
To say he’s been through a lot is an understatement, but his friends and family say he’s chosen to keep his mind focused on helping other kids going through the same experience.
That’s why he started the Building Hopes foundation, through which he and his family collect Lego sets and deliver them to patients in children’s hospitals. Friends of the family are hosting a collection event on Tuesday at Blue Bear Campground in Todd, and they’re inviting you to be a part of the effort.
Joseph’s parents, Jimmy and Alison Dees, took him to the hospital in August 2011 when he began showing symptoms of a severe migraine headache at the age of 9. Within a few days, he was undergoing surgery at Brenner Children’s Hospital in Winston-Salem to remove a mass that was determined a high-grade glioma brain tumor.
Later, he made what doctors called a miraculous recovery, suffering no neurological deficits despite the severity of his surgery. He was diagnosed with recurrent glioblastoma multiforme when the cancer came back in July 2014, and he started chemotherapy the following month and treatment at Duke University Hospital.
When the cancer returned in January 2015, neuro-oncologists sent him to Cincinnati Children’s Hospital in Ohio for a revolutionary treatment option, which included injections of a virus aimed at destroying the tumor.
“He was the first pediatric patient in the world to receive oncolytic viral therapy during brain tumor surgery,” Alison said. “A lot of people saw something on 60 Minutes that was done at Duke where they injected adult patients with polio virus. This was a mutated herpes virus and it had been done in adults overseas with other types of tumors, but never in pediatrics.”
Doctors didn’t put much faith in the treatment, however. Because Joseph was the first child to receive it, the dosage was kept to a minimum to prove that it was safe for use in pediatrics.
“They proved that it was safe, but the dosage wasn’t high enough,” Alison said. “The doctors didn’t really think it would work.”
In May, an MRI revealed that the cancer, also known as GBM, not only remained in his brain, but had also spread to his spine — a rare behavior for this type of cancer.
“Since then, the doctors have told us there really isn’t anything they can do,” Alison said. “There is one experimental drug we could try, but they don’t have high hopes for it and they don’t think it will work. It’s never been used in pediatrics.
“We have thought about different kinds of radiation, but we have been turned down at almost every radiation facility because his case is too difficult.”
Throughout the experience, the Dees family has remained focused on Christ and relied on their faith to keep them strong. Now, with little to no options left in the world of conventional medicine, they’re seeking treatment for Joseph from a holistic healer in West Palm Beach, Florida.
“GBM is an extremely hard cancer to deal with and its aggressive, and it acts very differently with pediatrics than it acts with adults. We have always taken an integrated approach, but this time we felt God was leading us to just try a natural practitioner,” Alison said. “We went to see a man named Doug Phillips, who has had success with alternative therapies for cancer as a theocentric healer, or a God-centered healer.
“Joseph was very ill by the time we got down to West Palm Beach and was having a lot of difficulties. But we started on the treatment and it’s been amazing — we’re blown away and he’s doing really well.”
Alison describes the treatment as a combination of practices like applied kinesiology, laser energetic detox and herbal medicines.
“He’s doing really well and still taking the herbs. He’s still having a lot of headaches, but what’s amazing is that he’s not showing any progression and he’s staying stable,” Alison said. “We haven’t had anymore scans since May so we don’t know what’s going on, but hopefully the disease is being eradicated from his body by the treatments. He does have a lot of fatigue, but he’s a strong little boy and we believe that God’s got him in his hands.”
After receiving the oncolytic viral therapy in Cincinnati, Joseph and his mom were confined to the neuro-surgery floor for the first five days of his recovery. No stranger to the recovery period after undergoing three brain surgeries, Joseph always chose to pass the time by building Legos — but they couldn’t get a hold of a set while in isolation.
“It was an FDA-enforced isolation because he was the first patient ever to get this. It was extremely frustrating because we couldn’t go get Legos and we could have anyone bring them in,” Alison said. “We had to be up there for 56 days post-surgery and we were in downtown Cincinnati with nowhere to get Legos and no one we could call on. We eventually used the hospital’s concierge service, and they want to Target to get them for us.”
During their stay in Cincinnati, Joseph often relied on his Lego set as an outlet for expression and energy. After each surgery, he also spent a lot of his time walking around the hospital and praying for the other children, noticing that many of them didn’t have family around like he did.
Even when it was time for Joseph to head back to North Carolina, Alison said he remained concerned about the pediatric patients, many of them new friends, he was leaving behind.
Alison said, “He was ready to go home, but he would say, ‘Mommy, I don’t want to go, because who is going to pray for these kids?’”
Before they left Cincinnati, Joseph told his parents that he would love to go to the store and buy Legos for all of the other children at the hospital. Inspired by their son’s selfless heart, Jimmy and Alison helped him make that dream a reality.
Joseph chose the name “Building Hopes,” and soon his very own charitable foundation was born.
“We bought the domain name for the website together and it was really fun,” Alison said. “We got our first Lego sets from the Lego store at Kenwood mall in Cincinnati, and we delivered 112 sets the first time.”
In the future, they hope their story will inspire other families in similar situations to follow their faith, and that Joseph’s website will encourage people across the country to host their own Lego collection drives and deliver the toys to their local children’s hospitals.
Joseph is still undergoing holistic treatment, and the Dees family has a lot on their plate, so there’s not much time for collecting and delivering Legos. That’s why their nearby friends and neighbors have organized a Lego collection drive, fundraiser and potluck dinner that will take place on Tuesday at Blue Bear Mountain Camp.
Todd and Miel Mortensen of Todd’s Calendar, close friends of the family who are helping to organize the event, say they’re inviting the public to attend and hope to receive a great response from the community.
“Joseph is mature beyond his years, you know? He sort of has an old soul type aura about him,” Todd said. “He’s just walking with such maturity and wisdom when this cancer has been so hard on him. He’s a true living witness to the love of Jesus and for others.
“He’s incredibly concerned about others. He’s not focused on himself at all, but he’s worried about others, although he can relate personally.”
The event, 5:30-8:30 p.m. on Tuesday, will include live music and dinner provided by Blue Bear Mountain Camp. The entire community is encouraged to participate. If you want to help Joseph reach more pediatric patients, bring a Lego set (which often costs $7.99 or less) or a donation to cover one and a side dish to share at the potluck.
“Joseph is so selfless, it’s just amazing. He’s so strong emotionally and spiritually, and wise beyond his years,” Todd said. “He’s incredible, and it’s just powerful to be around. We want to do everything we can to celebrate him and his efforts to bless others.
“He is a great testament to others for fighting as hard as he can, and he’s doing it in a way that blesses others. It’s a real honor to know him.”
Alison said she hopes the inaugural Lego fundraiser will encourage people in other communities to host their own collections and continue Joseph’s dream of bringing toys, and smiles, to pediatric patients everywhere.
“Miel keeps calling it a ‘friendraiser’ and I love that,” Alison said. “She said it’s about getting our friends and more friends to support us with the Legos who know how far-reaching it will be.”
Additionally, she hopes that Joseph’s unwavering faith and selflessness will continue to serve as an inspiration to everyone he knows.
“I think it’s good for people when they’re going through something difficult to look outward rather than inward. You can really get wrapped up in what you’re going through and forget that the rest of the world exists,” Alison said. “It’s good to do something like this because it constantly keeps you thinking about other people. We really thank God that he made Joseph the way he is.”
Click here to read more about the Dees family.
Click here to visit Building Hopes online.