Story by Heather Duge. Video by Tom Riehm.

When Shelbie Collins signed up for a camp just for kids with cancer in 2008, she had no idea the countless ways it would change her life.

As she battled cancer, little did she know that her future husband, Kaleb, was in his own fight with cancer and that their paths would intersect at Camp Sanguinity.

A Shocking Diagnosis

On the last day of second grade, Shelbie Collins woke up lethargic and not feeling well. Her mom thought it could be a virus but took her to Sandra Peak, M.D. of Cook Children's Pediatrics Lewisville - Castle Hills, just to be sure. At the office in Carrollton, Dr. Peak noticed a contusion on Shelbie’s arm and bruising on her chest. She suspected leukemia and immediately ordered blood tests.

“In that kind of situation, you’re working five steps ahead of what is happening in the room,” Dr. Peak said. “I ordered blood tests stat.”

That same day, Dr. Peak had to make the phone call every pediatrician dreads. She was not able to reach Shelbie’s mom, so she called her dad.

“That is a conversation that will forever be etched in my mind,” Dr. Peak said. “Her dad was instantaneously devastated and ready to attack the cancer. The security Shelbie’s parents had in their child’s health was pulled out from them instantly. That one phone call changed everything.”

Journey to Healing

Shelbie remembers her dad setting her on his lap and saying the words “you’re sick and we’re going to take you to Cook Children’s and will be by your side the whole time.” But Shelbie says it didn’t really sink in until she was at the hospital and heard the words “acute lymphoblastic leukemia” and “chemotherapy.” 

W Paul Bowman, M.D., Shelbie’s oncologist at Cook Children’s, would lead the team providing Shelbie’s comprehensive care. 

Treatment began immediately and a couple of weeks in, she underwent surgery to receive a port. Dr. Bowman talked to her parents about a therapy program he coordinated – Total XV protocol which is a research partnership between Cook Children’s and St. Jude Children’s Research Hospital that includes three phases and lasts 2 and a half years. 

Shelbie’s parents agreed to the protocol, and the first phase, induction, involved 46 intense days of chemotherapy. During the second phase, consolidation, Shelbie received high dosages of chemotherapy for three to four days biweekly. After two months of phase two, Shelbie moved to the final phase, continuation, with chemotherapy once a week.

“Through the inevitable ups and downs of chemotherapy, Shelbie remained a positive and happy child,” Dr. Bowman said. “She was always inquisitive and wanted to participate actively in her treatment with an understanding of the purpose behind each procedure and medication.”

Taking a Turn for the Worse

Sixteen months into her treatment, Shelbie’s doctors discovered she had gallstones. Later that evening, she spiked a fever and developed sepsis, a severe illness caused by an overwhelming infection of the bloodstream by toxin-inducing bacteria. Her kidneys shut down, and within 24 hours, she was in septic shock. Dr. Peak rushed to the hospital.

“When I walked into her ICU room, she was surrounded by so many doctors and nurses and on a ventilator. I could see the devastation in her parents’ faces. In that moment, it was the most fear I have ever felt as a physician.”

Dr. Peak and Shelbie’s other doctors discussed options as she only had a less than 1% chance of making it through the night. Britt Nelson, M.D., and the other doctors decided dialysis was the only option for her to have a chance at survival. Dr. Nelson's idea to do dialysis saved Shelbie’s life, Dr. Peak said.

“She was very sick,” Dr. Peak said. “Angels were flying so low around her that night.”

‘Miracles do Happen’

Shelbie was in an induced coma and fought through the infection for nearly three months in the hospital, not able to receive any chemotherapy. As the infection proved relentless, Shelbie proved resilient. She overcame sepsis and had to relearn how to walk and eat again.

What was planned for six months in rehabilitation ended up only being six weeks. After only three weeks, Shelbie’s determined spirit was on display as she started walking on her own.

“It was amazing to see Shelbie after that, walking into my office with all her energy and positivity. She is a reminder that miracles do happen.”

Shelbie’s cancer ultimately was put into remission, and she remains cancer-free.

Another Journey with Cancer Begins

In 2007, as Shelbie was nearing the end of her treatment, Kaleb Collins was just beginning his journey with cancer at Cook Children’s. He was 10 years old at the time and played baseball almost every day in his hometown of Wichita Falls. So, when Kaleb’s right knee began to swell, his parents thought it was a baseball injury.

After the first set of scans, doctors initially thought it was a growth plate fracture, but full body scans later revealed a different diagnosis – osteosarcoma (bone cancer) in his knee. 

Dr. Bowman also served as Kaleb’s primary pediatric oncologist as Kaleb underwent chemotherapy and a total knee replacement while taking part in a childhood cancer research study which involved 70 weeks of injections. In early 2010, Kaleb finished his treatment.

“Both Shelbie and Kaleb were fortunate to have the support of loving parents and family who contributed to a sense of security and emotional stability during their prolonged course of treatment and follow-up,” Dr. Bowman said. “They faced childhood cancer with courage and determination.”

“Looking back, I feel blessed,” Kaleb said. “I had a great mentor who was treated at Cook Children’s years ago and helped me through. I remember the people who cared for me always looking for ways to distract from the reason I was there, like Dr. Donald Beam and Dr. Kenneth Heym who would play games with me and amazing nurses who still keep in touch.”

Once-in-a-Lifetime Meeting

During the summer of 2008, Shelbie and Kaleb arrived at Camp Sanguinity – it would be her last year and his first time as a camper at a place they both found to be their safe haven. After meeting and sharing each other’s stories, they realized a common bond: they both viewed cancer as a part of who they were but something that did not define them.

“Having gone through cancer, we have more empathy for each other and a different lens for us to look at others,” Shelbie said. “We took our experiences and turned them into that strength.”

Kaleb describes his time at camp as an incredible week where kids with cancer just get to be kids.
In the summer of 2014, Shelbie and Kaleb went back to the camp for a leadership retreat for childhood cancer survivors. This time they reconnected and stayed in touch.

Shelbie remembers the day their relationship shifted to being more than friends when she visited him after surgery in December 2014.

“Sparks flew almost instantly,” Shelbie said. “I remember Kaleb texted me on my way home.”  

A New Chapter Together

Five years later, Kaleb proposed to Shelbie and the next chapter of their lives began in Oklahoma. Knowing the couple may have difficulty getting pregnant after undergoing chemotherapy, they were referred to a fertility specialist. While waiting for the appointment, Shelbie found out she was pregnant with their miracle baby. One of her first thoughts was moving back to be close to family and another very important person to them – Dr. Peak.

After their son, Graham, was born in 2021, the couple decided it was time to move closer to home.

“I made an appointment with Dr. Peak,” Shelbie said. “She started bawling. Graham was three months old when he first met her. Dr. Peak being Graham’s doctor has been the cherry on top. Watching her take care of our miracle baby is the biggest blessing to us.”

Dr. Peak feels the same way and loves her “grandpatients.”

“I have always wanted to be a doctor since I was a kid and played clinic for fun,” Dr. Peak said. “It is moments like taking care of Graham that remind me how blessed I am to be there for the whole family.”

Gaining Strength from her Patients

When Dr. Peak was faced with her own health challenge a couple of years ago, it was her experience with Shelbie that helped her get through the tough times.

“When someone tells you it’s cancer, your whole world crashes,” Dr. Peak said. “It had been years of me giving that news and I never dreamed I would be on the other end.”

In moments of despair, as she fought through treatment to fight breast cancer, Dr. Peak thought of Shelbie and other kids who handled cancer with such grace and strength.

“How could I not be strong?” 

Giving Back to Others

Shelbie and Kaleb visit Cook Children’s for annual checkups together and provide research on the protocols as part of the Cancer Survivor Program. They have a passion for giving back in ways they were given – such as being counselors at camp. They served in that role for four years and have plans to go back.

Kaleb said he shares hope with the campers at Camp Sanguinity by showing them they have a lot to look forward to as survivors, counselors and even having a family one day.

“Camp is everything,” Shelbie said. “It is so impactful, and we have every intention of going back as counselors this year.”

Shelbie also regularly gives back in another way – her job. She says that watching nurses interact with families while she was a patient and shadowing in the Hematology-Oncology Clinic at Cook Children’s gave her a passion for helping others in the medical setting but in a different area.

“I wanted to save that part of life for camp,” Shelbie said. “It hit a little too close to home being back in the Oncology area.”

Shelbie now works as a nurse in the postpartum unit at a local hospital.

Part of the Family

Dr. Peak beams as she talks proudly about Shelbie and all she has overcome. She truly feels as if Shelbie and her family are part of hers now.

“I carry my families and kids with me, and they will always be a part of me,” Dr. Peak said. “Shelbie is with her miracle baby now, but she is my miracle baby.”

Go here to view Camps for Kids at Cook Children's.

Asked what makes her mighty, Makenzie Chapa flexes her biceps and flashes a smile.

“I have muscles,” she says with an upward tilt of her chin.

Those who meet the precocious 7-year-old would no doubt agree she’s strong. But so much more radiates behind the eyes of “Mighty Makenzie,” a nickname given by family and friends who have rallied around her since last year’s diagnosis of Langerhans Cell Histiocytosis (LCH), a rare cancer in which immune cells attack parts of the body.

Makenzie’s true superpower may lie in the unharnessed joy she emits as she bounces from a chair to grab something off her grandma’s desk, to peek at her baby sister inside a stroller, to dash down the hall and back, all the while peppering nearby adults with one-liners.

Besides showing what it means to be truly brave and persevere, “she has taught me about finding joy in the little moments, even when things are really hard,” says her mom, Amanda Parsons.

 “I’m thankful she has not let it affect her as hard as I probably would if I were her. I’d be a mess,” Parsons says. “But she’s selfless, always thinking about others, even when she’s going through so much.”

In February 2021, Makenzie complained of back pain, and Parsons, who was pregnant at the time, wondered if her daughter was mimicking her own complaints. But the pain became so severe, Makenzie would wake in the middle of the night crying. And at one point, the severity of it caused her to fall during a gymnastics class. Parsons took her daughter to an urgent care clinic, but X-rays of her spine didn’t show a problem.

Parsons, a physical therapist assistant, then took her daughter to Julee Morrow, M.D., her longtime Cook Children’s pediatrician, who referred her to an orthopedic specialist for tests. The specialist wanted to wait six weeks before running imaging tests on Makenzie, suggesting it was probably muscular, the most common cause of children’s back pain. 

But Parsons’ gut told her otherwise. Her daughter’s pain seemed too extreme. Again, she contacted Dr. Morrow, who ordered an MRI, which Makenzie received a few weeks later.

On April 2, 2021, less than an hour after the MRI, Parsons answered a call from the pediatrician’s office. She was told to keep Makenzie’s head as still as possible and get her to Cook Children’s Medical Center right away. The MRI results revealed a mass on her C-7 vertebra, near the base of the neck, which had caused the vertebra to collapse. It was critical to keep Makenzie’s neck and back stable.

“It was like a movie moment. I just dropped everything in my hands and ran out of the store,” says Parsons, who had been shopping while her mother watched Makenzie. “I called my mom, bawling, and asked, ‘Where’s Kenzie right now?’ She told me, ‘She’s riding her bike.’ She literally had just taken her training wheels off a week before this happened. So, I start yelling, ‘Get her off! Get her off!’”

Makenzie’s grandma, Bridget Page, R.N., is director of Occupational Health Services at Cook Children’s. She wasn’t sure what was happening when she answered her daughter’s frantic call.

“I was just sitting on the driveway watching Makenzie ride her bike,” Page says. “I could tell Amanda was scared.”

And with good reason. Makenzie was admitted into the medical center within an hour of having the MRI.

“I was expecting to come in, get something like a neck brace to keep her safe, then go home and figure out the next steps,” Parsons says. “When the doctor came in, she said they were suspicious about what was going on and thought it might be something called—she said it so fluently, I’ll never forget—Langerhans Cell Histiocytosis (pronounced lang-gr-haanz sel hi-stee-ow-sai-tow-suhs). And I was like, was that English? What did she say?

“Then she said, ‘So, that means you’re going to be here for a little while,’” Parsons says.

LCH affects one in 200,000 people, mostly children, but has a high survival rate. Located in the skin, Langerhans cells fight infection in the body. But with LCH, the patients produce too many of the cells, which in turn, attack parts of their own bodies.

Makenzie, who was put in a cervical neck collar, spent that Easter in the hospital, where she underwent several tests, including a PET scan to determine if she had other tumors. Fortunately, it appeared she only had the one on her C-7 vertebra. After two attempts to biopsy it, a LCH diagnosis was confirmed, and Makenzie was moved to oncology for treatment.

She immediately started chemotherapy but didn’t respond well to the first dose, her mom says. About a month later she received a second dose, which her body seemed to handle slightly better. Two weeks later, in June, Makenzie received a third round of chemo just before getting another PET scan.

“This scan would tell us if the chemo was getting anything. It had only been two cycles, so we weren’t expecting a whole lot of difference,” Parsons says, “but it was a world of difference. The chemo had worked at shrinking her tumor. But, unfortunately, the tumor was literally holding her spine together.”

The LCH had all but disintegrated her C-7, and the shrinking tumor caused severe misalignment of her spine, putting Makenzie at risk for spinal cord trauma. Surgery to fuse her vertebrae was needed, but because of chemotherapy, her blood count levels were too low.

It was too risky. Spinal surgery would have to wait.

Halos in Motion

Makenzie—who at the time was violently ill from the third round of chemo— needed a halo ring implant immediately to keep compression off her spinal cord, Parsons says, adding, “If she’d moved a certain way, it could have been catastrophic.”

Makenzie was admitted into Cook Children’s infusion clinic where she received fluids to control the chemo side effects. The next day, on June 10, 2021, Makenzie underwent surgery for halo placement. The procedure uses two rods and four pins implanted on either side to keep the head and neck stationary and stabilize the spinal cord.

It was a difficult transition for the energetic girl who just a few months earlier had enjoyed jumping on the family’s backyard trampoline, playing soccer and learning gymnastics. But doctors, nurses, chaplains and child life specialists at Cook Children’s helped her granddaughter through some dark days, Page says.

For instance, when she heard Makenzie was anxious about the halo surgery, child life specialist Erin Loftus worked with a surgical nurse to fashion a doll wearing a halo brace to show Makenzie what would happen in surgery and how the halo would work, Page says.

“Erin sat there for about an hour showing her the doll, talking about what Makenzie was afraid of and what the surgeons were going to do,” she says. “When we walked back into her room, Makenzie was all smiles. She had perked up.”

Meanwhile, genetic testing showed Makenzie had a rare mutation of the BRAF-R506 gene, which may play a part in LCH. The family was told about a new treatment that targets that particular mutation.

“They asked if we wanted to try it. It’s an inhibitor medicine, basically like a daily chemo pill that doesn’t have the side effects that infused chemo does,” Parsons says. “We said absolutely. Anything to keep her from going through what she went through. So, she has been taking that pill every morning since last July and seems to be responding to it.”

Before she could have spinal surgery, though, the chemo effects needed to be monitored in her body, as well as the new medication’s potential effects. Surgery was set for September 2021, but with another surge of COVID hitting the area, it was postponed. At the end of October 2021, surgeons were able to fuse Makenzie’s C-5 through T-2 vertebrae to stabilize her spine.

As she healed, Makenzie continued to wear the halo until the end of December. Despite some difficult days, she made it through almost seven months of wearing the device, something typically worn no more than 12 weeks, her mom says.

That doesn’t surprise Makenzie’s grandma, though. Makenzie will not be defined by her medical condition, she says.

“She has taught me that even on your darkest day, you can find some glimmer of happiness. Even if you’re facing trials in life, you can find happiness and not dwell on what’s going on with you,” Page says. “You accept it and keep moving. And that’s what she does. She might have a little pity party for a day or two, and then she’s like, ‘Oh, well,’ and she just keeps going.”

Two Feet on the Ground

With targeted therapy, Makenzie’s long-term prognosis is excellent, says Anish Ray, M.D., her pediatric oncologist at Cook Children’s.

“She has been able to be playful and active, free of chemotherapy-related severe toxicities,” Dr. Ray says.

Makenzie will continue to be monitored for LCH, says Parsons, who joined an LCH community on Facebook to keep up with treatments and research. In April, she also rallied friends and family to raise $10,615 for The Blast, a Cook Children's event that supports research, clinical trials and treatments for patients and families at Cook Children’s Hematology and Oncology Center. Mighty Makenzie’s team also was recognized as the highest new fundraising team by The Blast.

 “We’ll always be on the lookout for it,” Parsons says, adding Makenzie has an upcoming PET scan in August. “I don’t think they’ve had anyone on this medicine long-term, yet, so we’ll find out if it’s something she can be on for a long time or if we have to figure something else out.”

Free of halo traction and of chemo side effects, Makenzie is back on the move, restricted only by “two-feet-on-the-ground” protocol. She hopes to go back to in-person school as a second-grader in the fall, her mom says.

Makenzie enjoys playing with her best friend, Bradley. She draws and paints. And she loves math, especially learning about money, she says with a quick grin.

She also is learning to play the acoustic guitar, electric guitar and keyboard. Her favorite band to listen to? “Queen,” Makenzie says without hesitation, “because they’re funny.”

Ashraf Mohamed, M.D., the first pediatric oncologist at Cook Children’s who saw Makenzie, continues to check on her as she navigates LCH and the complications around it.

Her toughness and willingness to fight the disease is inspiring, Dr. Mohamed says. In almost 30 years of practice, he has seen only a handful of LCH cases in which the spine was affected.

“The decision to put her in a halo, which is a really major thing for a child like her, I couldn’t imagine how she would tolerate that,” he says. “Being in this big halo, which is really heavy, and still being able to play and do stuff, that was really amazing.”

“The key thing that sticks in my mind when I think about Makenzie is her being so smart. She knows what’s going on. She knows how to ask questions and advocate for herself. That’s really amazing for 7 years old,” Dr. Mohamed says. “Each time I see her and see the big smile on her face, I tell her, ‘You make my day.’ She basically makes the people around her happy.”

The life-changing news can mean the loss of a “normal” life. Even the most straightforward cancer with a 95-percent cure rate can impact jobs, marriage and the children’s sense of security.

And in the most tragic cases, the diagnoses can result in the death of a child.

“Despite amazing advances in childhood cancer treatment, too many children will lose their battle,” said Kelly Vallance, M.D., a hematologist and oncologist at Cook Children’s. “Parents, siblings and friends are left behind to deal with their loss and grief, often without support.”

As a pediatric resident, Dr. Vallance noticed the special bond that developed between families of a child with cancer and their health care providers. So many families were in and out of a hospital over the course of years.

“That can be a sharp sever for families,” Dr. Vallance said. “In my training I felt there was a lack of end of life support for families. A lot of families feel once the goal of treatment changes from cure to comfort and they leave the hospital, a lot of families feel abandoned. Now they are home, meeting new caretakers or leaving the hospital without their child. They feel they’ve lost the security they have felt for so long being in the hospital.”

Dr. Vallance joined Cook Children’s in 2009, specializing in treating childhood cancer. In the back of her mind, she knew wanted to do something to help grieving families.

Cook Children’s Pastoral Care plays a pivotal role in helping families throughout the hospital who are coping with the death of a child, including children with cancer. But because of the special bond created with families and staff in hematology/oncology care, Dr. Vallance wanted something specific for those families.

After applying and receiving a scholar grant through Hyundai Hope on Wheels, Dr. Vallance started the Cook Children’s Oncology Bereavement Program. The purpose of the program is to provide and maintain a therapeutic relationship for patients and families during the entire spectrum of their disease, up to and including their death and 18 months past that date for their family and friends.

As Family Care Coordinator at Cook Children’s, Mandy Sale serves as a familiar face and primary contact for families in the Hematology/Oncology department. She visits the families and is an advocate for them during their stay in Hematology/Oncology. Because of her familiarity with these children, it only made sense that she would also help facilitate the Oncology Bereavement Program.

Sale and Dr. Vallance are two of a group of health care professionals involved in the program, including physicians, nursing, child life, pastoral care, social work and ancillary staff.

The group supports the patient and family throughout the continuum of end of life, death and the grieving period.

The experts in this field also offer help to those treating the families. An aspect of the program involves supporting the emotional needs and preventing compassion fatigue for the pediatric oncology staff.

But the primary focus is on the families. Few Pediatric Oncology Centers have organized or standardized support protocols in place for families during and after the loss of their child.

“We want to give comfort to parents, siblings and friends who are left behind to deal with their loss and grief," Sale said. "They are often left behind without support. Children with incurable or progressive illnesses, such as cancer, often express concern for their parents and siblings. They worry they will not be able to cope when they are gone. Through the bereavement program, we help to meet these hopes of our patients by caring and helping their loved ones during one of the most stressful life experiences and the lifelong grieving process."

The Oncology Bereavement Program includes:

Oncology Caregiver Bereavement support provides personal communications with the family, including:

• Maintaining a therapeutic relationship with all patients.
• Facilitate legacy building activities with families including trips/wishes when possible.
• Support for patients/families that remain inpatient for end of life care.
• Support for patients/families through transfer to home care or hospice care.
• Continued support by phone, for those who have left the hospital, by a familiar and involved team member during the hospice phase until time of death.
• Bereavement package at time of death with resources for support.
• Attendance by Oncology representatives at local funerals.
• Coordination of letter from caregivers.
• A personal card to family on patient’s birthday and anniversary of death.
• A bereavement phone call data base for follow up phone calls, from an involved familiar care giver, to families at 3,6,9,12 and further as needed.
• The option of trained therapist/counselor to visit child’s class and siblings’ classes to answer questions and provide grief counseling.

Bereavement Programs offered to families include:

• An annual Remembrance Ceremony.
• Camp Morning Star- A weekend camp for families who have lost a child that was treated at Cook Children’s. The camp is held annually at Camp John Marc in Meridian, Texas. Parents and children have a chance to enjoy being together as a family and also participate in therapeutic activates to help them cope with their loss.
• Sib Shop- Sib Shop is a national organization that is focused on helping meet the needs of siblings of kids with chronic illness. This group is led be a trained Sib Shop facilitator and Child Life staff from Cook Children’s. This is a specific group for siblings who have lost a brother or sister at Cook Children’s. They meet quarterly now but could increase this number with more funding.
• Referrals to appropriate grief family retreats and camps local and national.