Major bumps in road conquered
BREMEN — Fighting cancer is a long and difficult road that some do not return from. There are good days and bad days. There are smiles and there are tears. And often, the road is bumpy.
Dylan Shumaker and his family have experienced the gamut of these trials and tribulations and now — hopefully — after five months of tests, needles, one surgery and a six-week (33-treatment) round of proton radiation therapy, they can say that the worst is over.
“They did the (original) biopsy June 22, and then went in and removed the largest tumor July 10,” explained his mother Kay Shumaker. “They left the other two because they were at his spinal cord and they didn’t want to operate.”
And while the sophomore is the one that’s had to go through the pain and discomfort, the emotional and financial toll has been one the entire family has felt. To begin with, in order to be by his side, Dylan’s father had to be off work. The other three children, young girls, stayed with close family members so they could continue with school and have some basic normalcy to their days while Kay and Mike rented an apartment near the hospital — which proved to be much cheaper than paying for a hotel room or driving the four hours to and from the hospital every day. “It’s your child — you know?” said Shumaker. “It’s not like you’re going to leave him there ... alone ... and say ‘good luck.’”
Now their family back together again the Shumakers are now living the aftermath of his physical battle as the bills continuously pile up. And while many in the community and surrounding areas rallied behind the family taking in donations, hosting fundraisers and selling items to raise money to help them be able to continue to furnish for their family the basics: food on the table, a roof over their heads, clothing, school books, and warm beds to sleep in — and hasn’t yet fully depleted — won’t last long.
“The bills are unbelievable,” Shumaker said. “That’s a whole other fight. Our primary insurance denied coverage for the treatment saying it was experimental. They said he should’ve had another type of procedure, radiation therapy, which is much more generalized. They said there was no medical evidence that it is any better at giving him a better quality of life in the long run.”
What Dylan had, proton radiation is three- rather than two-dimensional — is more controlled, so professionals can see how deep that are going. “Our doctor told us this was safer for him,” Shumaker explained. “And Bloomington is one of only 11 places in the United States that offers it.”
But the company wouldn’t budge, the same company that refused another Bremenite battling with cancer, saying his procedure was also “experimental.” The Shumakers are in the process of an appeal to the company but hope their secondary insurance for their son will come through. Twenty of the 33 treatments to the young man were directly to his spinal cord and brain and the last few focused entirely on the area of his spine at his tailbone.
“Doing the proton therapy you’re dealing directly with the tumors,” Shumaker said. “They are at his spine, one at the back of his neck. By doing this therapy they’re not taking the chance of burning his internal organs, spinal chord, his liver, his lungs. They are all right there. The proton therapy he had didn’t even so much as make him sore in the back of his throat when they were focusing it at the back of his neck.”
She said the people in charge of the Bloomington facility said they had never had any insurance company deny any patient the proton radiation therapy.
“When you’re putting your child’s life in a doctor’s hands, especially for something like this, you are trusting them,” Shumaker explained. “You do what they advise is best. “You don’t ask ‘will I be able to afford it?’ but ‘how soon can we get him started?’”
The therapy was one that had the teen enclosed in a Cyclotron, the machine that pinpoints and target-treats the tumor — an hour (or more) at a time — and with a mesh mask over his face that is bolted to the table that leads him into the machine. “There is music playing in the room and we could watch him the entire time,” Shumaker said of her son’s treatment. “The techs were so good to him. They really became close. You could tell when he would go in and his chest would rise and fall you could tell that he was a little nervous. The techs would start talking to him, asking him things and joking with him. I could just see his breathing become more even as he relaxed.”
He was also supported by family, new friends and old friends. “I had the pleasure of taking some students to Bloomington to celebrate with Dylan and his family for the end of his radiation treatment,” explained Bremen High School Guidance Counselor Melissa Manges. “It kind of came up in conversation. Some of the kids wanted to go down there with him and I asked Mr. (Bruce) Jennings (the principal) if we could allow them to be excused.” She said Jennings was “truly awesome about it” ... as was Dylan and the medical center’s staff. “One of our (school’s) core values is ‘caring school community’ and our kids and principal couldn’t have better shown an example than that,” she said.
“The sophomore class is so very close,” said Shumaker. “It’s a really special group of kids.”
Manges said the professionals welcomed the supporters, offering them a guided tour which she described as “a wonderful learning experience” and allowed them to watch Dylan enter the machine for the final therapy session.
“They (the Center’s staff) told us how the proton therapy is less intrusive and has the least side affects,” Manges said. “They explained to us what the machine did and let us touch it. It comes out of the floor and the machine was used in World War II. It was something they used to make the atomic bomb.”
“It was probably one of the best days of my life,” Manges continued. “It was an amazing experience. We got to see the mask he had to wear over his face while he was in the machine. It was amazing, such a good example for the students to see how much inner strength it takes to do that. Dylan has amazing mental ‘toughness.’”
“He was completely surprised that they all came,” said Shumaker of her son. “It made his day a lot more enjoyable. He was nervous about leaving the hospital after living there for six weeks and that made it easier.”
Following the tour and medical and life lessons, the 25 to 30 friends and family present at the Indiana University Proton Therapy Center threw Dylan a party. Manges said they celebrated with chocolate milk and cookies in a balcony area and that Dylan got to ring a bell, part of a tradition led by the Center to celebrate a patient’s final treatment. “It was beautiful, very emotional,” she explained.
A plaque near the bell reads:
“The day is finally here,
you’ve come so far.
Rejoice and be happy,
accept who you are.
Live every day with
purpose and aim,
Decide what you want,
make living your game.
Your treatments have ended,
you’ve done very well,
It’s time to celebrate
by ringing the bell!”
“Later (Oct. 15) We had a school convocation during bonus period and the kids that went did a PowerPoint presentation telling everyone about the proton therapy.”
But that wasn’t the only thing that was brought back from the visit. Of Manges, Shumaker said her efforts and support changed their dynamics tremendously. “She’s became a friend, not only for him but for me too,” she explained. “It’s developed to much more than a counselor-student relationship.”
Manges agreed, “I went down there as a guidance counselor leading the students who were his friends, but when I left I came back from visiting friends.”
Dylan’s form of tumor could’ve been cancerous or non-cancerous. “Most tumors you wait and you wait for that pathology report,” Shumaker said. “With his, 90 percent of the tumors are cancerous. ... As a parent, you prepare yourself for the worst, but then when they tell you, you really can’t believe it.”
She said that parents that hear this horrible news about their own child should at first expect to be unbelieving, shocked, and even angry. “You’re whole world is turned upside down in a matter of seconds,” she said. “I know that if I can be of any help to anyone facing any type of cancer, just for someone to talk to, I would be more than happy to. We all need someone to lean on, someone to talk to.”
She said parents should also remember “that there are no stupid questions.”
“Ask the doctors; ask the techs; ask the social workers,” Shumaker advised.
Dylan’s cancer was caught at Stage 1, “early” in the terms of the disease’s progression (regardless of the type). His doctors told Dylan that while the cancer may never come back, he will always have to be vigilant, ever watchful for its return so if caught early on, the chances of beating it again are highest. The Monday after Thanksgiving he will return to Riley Hospital for Children for an MRI and will see his neurosurgeon and the following Wednesday he’ll be heading to Bloomington to see the radiology oncologist for a follow-up. Because the proton radiation makes the surrounding tissues of the targeted area swell, medical professionals have to wait for tissues to return to normal so they can see if the tumors are entirely gone. Then he will be followed closely — for the remainder of his life — every three months.
“His type of cancer, they never consider it ‘gone’ or ‘in remission,’” Shumaker said of her son’s diagnosis. “He will see a doctor once a month for the next several years. And he’ll get an MRI every three months. So I guess the worst case scenario is that if they find another tumor, it will only be three months old.”
His mother said Dylan was excited to be done with the treatments, and to be able to go home and to return to school, but he was also a little sad to say goodbye to the medical techs he had grown close to and a little fearful about his reintegration into daily school life. “He was a little nervous,” Shumaker said. “Every day you’re doing something about treating cancer and then it’s back to your old life.”
Two days after returning from the treatments in Bloomington he faced a fight with a bacterial infection which had him admitted to Memorial Hospital for several days as his weakened immune system was forced to battle even more. He was treated with IV antibiotics and went home after a week with IV therapy.
“When he’s done with high school; when he’s in his 20s, he’ll still have to follow up regularly,” Shumaker explained. “It doesn’t just go away and then you’re done. We can’t drag him to the doctor’s when he’s grown. They explained to him that this is his life and told him if he doesn’t continue to be checked. They said: ‘you’ll be playing Russian Roulette.’”
Shumaker said now, all they can do it wait and see what comes of the follow up MRI and readings and then it’s all about coping and addressing things and getting their family back to normal. “It is what it is,” she said of her family’s journey. “We have a normal life but with a new twist.”
She said the doctor’s allow him to do more than she and her husband have as parents. “We put more limitations on him but we can’t take away much more,” she said with a laugh. “You can’t give him an x-ray every day to see if there’s anything there.”
A long and bumpy road but the Shumakers are doing their best to remain positive about the future. Toward the end of Dylan’s bevy of medical procedures he found a classmate, the son of one of his wrestling coaches had been diagnosed with cancer. He took it upon himself to want to reach out to the boy to offer his support to him and his family.
“He has been so strong,” Shumaker said of her only son. “He wasn’t real happy about losing his hair but he’s faced this head-on and sometimes I think he’s the least worried about it ... but of course it affects him. It’s a roller coaster for all of us but he’s never hit rock bottom. With everyone supporting him, his coaches, friends, family ... it’s just amazing that they come to him just when he needs it most. It’s all part of God’s planning.”