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Dusty keeps the spirit

Four-year-old Dustin “Dusty” Doyle runs around shirtless, barefoot in his bathing suit at the Screven Motorsports Complex keeping up with his 5-year-old brother Gary “Fatback” Doyle Jr. on the playground without any problems. Dusty and Fatback wear swimming trunks so they can be sprayed off after playing in the mud, sand and grass.
Dusty, or Tater if you know him, is a “Wildman” known for his heart, fighting spirit and unfortunately his cancer, Langerhans cell histiocytosis (LCH), which causes bony tumors that can eat away and damage his skeletal system.
Dusty’s parents, Kim and Gary Sr., let him be a tree-climbing, adventuresome boy. All across Screven County signs of “Team Dusty” are seen. Residents likely have heard of Dusty and his cancer, but those residents may assume he’s a bedridden chemotherapy patient.
In spite of his third relapse, with the cancer discovered in September of 2011 in a growth on his left femur, he continues riding around in a golf cart with mom, brother, family and friends crammed in to see racecar drivers, like No. 2 Jordan Feider, who know him or will know him.
“I want him to be a normal kid,” his mother, Kim, said. “I don’t want to keep him cooped up in the house and say, ‘You can’t go nowhere; you can’t go outside; you can’t do this or this.’ I don’t want that for him. I want him to be as normal as possible.”
The family doesn’t set limitations on what Dusty does. Dusty goes to Lil Scholars like a normal Pre-K boy would and when it’s time for another round of chemotherapy a stuffed monkey named BoBo takes his place in the classroom taking “notes” for him and being looked over by the class’s 21 students.
“He’s kind of a wild man as his baseline, but this treatment has relatively minor side effects. It doesn’t make his hair fall out; it doesn’t drop his blood counts; it doesn’t make him vomit,” Dr. Martin Johnston said at the Backus Children’s Hospital in Savannah. Dusty rides a three-wheeler by his office with his mother following ensuring his chemotherapy drip remains in place. “There he goes.”
Dusty is taking his third variety of chemotherapy after a bone growth was found in the back of his head in March after going since October of 2013 without growths.
This third relapse brought about an unusual case of diabetes insipidus, which means the disease damaged his pituitary gland making the release of a hormone required in kidney operation stop working. Dusty will have to take medicine for the rest of his life in order to control his thirst and urination because the hormone controls the kidney’s water retaining function.
“If he goes like one hour past when he’s supposed to get his medicine he drinks constantly. Constantly drinks,” Kim said. “If you don’t give him something to drink he’ll try to drink out of the toilet, try to drink out of anywhere.”
Johnston said Dusty is his first patient in at least seven years of working in Savannah that has gotten diabetes insipidus as a result from his cancer and treatments.
Langerhans cell histiocytosis is a rare disease in itself, with only about one child a year seen for it by Johnston and nationally at a rate of 1 in 200,000 for children under the age of 10.
LCH can be found in life-threatening forms especially among infants, Johnston said. In Dusty’s case it may become dangerous.
“Per say the bone tumors are not life threatening but they weaken the bone,” he said. “You could develop a lump in your spine that could press on your spinal cord that could cause you to be paralyzed.”
The tumors cause the bones to be weak, which could cause additional complications to Dusty’s health. There is no cure for LCH, but chemotherapy has been proven to work at limiting LCH’s growths.
“(The disease is) up and down, back and forth, and then eventually at some point we hope it stops,” Johnston said. “I’ve treated a young man several years ago that was in his early 20s that was being treated for the fourth time. We gave him this same drug that Dusty is given currently (Cladribine) and he’s been off treatment for several years now and doing fine.”
After the September 2011 bone tumor was found and removed in Atlanta, Dusty was placed on a “wait and see” list for his LCH, Kim said. Only a few months later, in December, lumps were found on his head between his eyes and on top of his skull. It took two long weeks for Savannah x-rays to come in, revealing a quarter-size weak spot in Dusty’s skull.
Kim and Gary decided to see if Augusta could treat Dusty. He received his first round of chemotherapy in Augusta from February of 2012 until September. Chemo wasn’t working and Dusty relapsed during treatment.
Gary works for James “Redd” Griffin, owner of the Screven Motorsports Complex and the Savannah River Utilities company, and during this time had let Griffin know what was going on. When Griffin went on an auction run to Texas, he returned and had Kim asking him what the best route to Texas was as she had found a specialist of LCH online that was located in Houston.
“When Gary and them told me – doctors are like mechanics they all got opinions, they all have ideas, thank God we got ‘em, and sometimes we got other opinions,” Griffin said. “Kim got looking around on the internet for this type of cancer and found four experts – it’s not a common cancer – found out that there’s a guy in Texas, I said let’s get him on a plane.”
Griffin told Kim the best route to Texas was through “Delta” and got the family airplane tickets without a thought for the expense.
“I told Gary that whatever it takes we do,” he said. “Get that boy where he needs to go. We can fly him to the other side of the world to get his health. That’s the way I feel for the little fellow.”
The specialist in Texas said Dusty needed to take a different chemotherapy than the one Augusta had been giving him, one more severe to fight the growths as Dusty had gotten an additional 13 lumps after receiving treatment in Augusta. The Augusta doctors did not agree with the specialist and the family moved Dusty back to Savannah where he received the new chemotherapy.
While undergoing his second round of chemotherapy his family scheduled clinic dates around the same time as another local child was receiving hers. Brandilen Patience Mock and Dusty became cancer-fighting friends, trading their beads of courage with each other.
Brandilen died after her battle with cancer in September of 2013, and Dusty was named an honorary pallbearer. At the funeral visitation Dusty did not understand what had happened.
“When we got to the funeral home and he looked into the casket and told his daddy, ‘Daddy you need to go get Brandilen out of that box so she can come play with me,’” Kim said. “So he didn’t understand the whole concept of her not being here anymore.
“For a mother of a child with cancer, when you go to the funeral of a child that’s passed from cancer, when you look at that child in there you don’t see that child’s face, you see yours. It’s just a mental – maybe I’m the only one. That could very well be my child.”
As the Mock family mourned the loss of their five-year-old girl, the Doyles remained connected and offered what support they could.
“It was one of the hardest things I’ve ever experienced and you can’t help – I almost stayed away from Jessica (Mock) after Brandilen passed away because I was scared she’d hold it against me,” Kim said. “God took her child and yet he’s left me mine. Luckily she doesn’t feel that way, she’s a part of Dusty’s life and will always be. She wants to know how he’s doing.”
Tater and Fatback fight each other like normal brothers, but there is a special connection that can be seen when Dusty receives treatment – this week will be the first week Dusty gets chemotherapy without his brother being there because of school.
Theresa A. Ryan, staff registered nurse, got goose bumps remembering a particularly bad visit when Dusty was upset before getting treatment.
“There’s a unique tenderness that his family has that you don’t always find. Especially when you have him and his brother together, the support that these two young fellows have for each other is incredible,” she said. “During a procedure where he was getting ready to have his port accessed, just right before, he got upset and his brother slid right on up and put his hands on his knees and looked at him. They both smiled at each other. There’s such a sweet, special connection there. He was fine, that’s all it took. Just to be a part of that is a great experience.”
Dusty does give the nursing staff all they can handle on certain days, listing the names of the nurses who are put on his “Uncle Terry’s List” that he thinks are hurting him or wronging him in any way.
Terry Stewart is co-owner and director of Lil Scholars where Dusty goes to school for Pre-K, but don’t tell the nurses that as they think the “Uncle Terry” is a shadowy figure out to get them.
Lil Scholars has gone “above and beyond the call of duty” in teaching and caring for Dusty, Kim said. Dusty’s teacher, Lauren Milton, sends pictures and texts to BuBu, the stuffed monkey that stays with Dusty at the clinic, on what the class is doing that particular day.
The stuffed monkeys are part of a Backpack Buddies program that includes a book with information about treatments that cancer patients undergo and teaches the other students on what to expect and how to treat a particular student with an illness.
This week was the first time Dusty missed school. And his chemotherapy will have Dusty out for at least two more weeks in intervals throughout the year.
“Basically you just ty to take the monkey and put him in the classroom as much as you can so that the kids still feel like they have a friend there,” Milton said. “It’s an easier way to explain to the kids kind of what’s going on.”
This is the first time Milton has used the program, and she is excited at the chance to teach Dusty.
“It’s very rare for children with cancer and stuff like that to be able to actually come to the classroom,” she said. “Kim said oftentimes the teachers don’t want to bother with the animals or that, so his clinic was very excited that we were going to be able to use the monkey.”
Dee Dee Williams, teacher assistant for Milton, said the children already want to include the monkey in everything they do.
“During the whole week somebody wants to put BoBo in his place, like ‘Where does Dusty sit or is he in this group?’ They get an understanding of he’s sick – they don’t quite know what it is – but they fully understand when he’s not going to be here and when he’s going to be back,” Williams said.
Both educators feel they’re not doing anything special for Dusty, and believe the program enriches their own instructions giving children a life lesson in how to handle illnesses.
When Dusty’s blood counts were relatively low, the class decorated masks and wore them for Dusty to make sure he didn’t feel out of place with his.
“We feel, on our behalf, we feel blessed to have Dusty in our class. We’re not saying we’re better, but we feel like we stand out from the rest,” Williams said.
“We’re going to give him every experience just as if he’s a normal child,” Milton said. “Kim has been questioned as to why he’s in school, why he plays t-ball. It bothers me when people question that because he has every right as any other child to get an education, and to have friends and to learn and grow. Why would you take that from him just because he has cancer?”
At the mud-bogging track Tater and Fatback climb a dirt mound with two other friends. They watch two mud trucks race down the lane, covering their ears. The group of kids corner a cicada emerging from the dirt and throw dust at it. Tater jumps back and smiles watching the cicada right itself off its back.
“If you look at him, he’s running around and looks like the healthiest boy you’ve ever seen,” Johnston said. “The hope is that eventually the histiocytosis will kind of burn out and stop trying to come back.”
Smoke fills the air at the racetrack. The drag strip is running a small tournament and the dirt-track racers are getting used to the conditions. Tater and Fatback are running amok, celebrities that get what they want in terms of food, candy and drinks for free.
Griffin hopes one day the brothers will race on one of his many tracks – Fatback has already gotten into go-karts and Tater wants to join him. Dusty may race with blue and gold as his colors – they represent Child Cancer Awareness Month (gold) and Histiocytosis Awareness Month (blue), both in September.
“Dusty is one tough little customer, he has done really well,” Griffin said. “Battled this thing and I feel like he’s going to beat it in my heart, he’s a determined little fellow. Strong, outgoing. Him and his brother fight like cats and dogs, remind me of my brother and myself.”