Mom celebrates sending her two children to college – both have complex health needs

This fall, Tonya and her husband, Craig, will pack up the car and drive their youngest son Mitchell to begin his freshman year of college. Everything about Mitchell going to college is bittersweet for Tonya.

She's proud of Mitchell's academic and athletic accomplishments and excited for Mitchell's reunion with his older sister, Lauren, who goes to the same college. Tonya's pride stands on the shoulders of a long medical journey that began when he was born with a rare brain tumor. And the complex cardiac care Lauren experienced when she was two years old.

An easy-going toddler needs cardiac care

When 2-year-old Lauren came down with respiratory syncytial virus (RSV), she was simultaneously struggling to breathe while fighting a fever. Tonya took her to the Children's Health℠ Emergency Department.

While most parents would be nervous and feel out of place in the Emergency Department, Tonya felt comfortable, even confident. Tonya worked as a nurse in the Children's Health Emergency Department.

Like many parents who expect a relatively routine care plan, Tonya was surprised by a more severe diagnosis. Shortly after arriving, doctors from the Heart Center diagnosed her sweet spunky toddler with Supraventricular tachycardia (SVT), a heart condition that causes an irregular heart rhythm.

Lauren needed IV medication called Adenosine to stop her heart and reset it to a normal rate and rhythm.

"At one point, Lauren's heart reached 307 beats per minute. Thankfully, the medication worked, but Lauren needed to stay in the hospital for several days," Tonya said. "When we were able to walk out of the hospital, we hoped the SVT wouldn't be an issue, because, for a lot of kids, it's not. Lauren remained symptom-free for most of her childhood."

Fast-forward a few years, Lauren mentioned to her mom that during middle school dance practice, her heart would start beating so fast it felt like she had just run a marathon. When this happened, not only was it hard to breathe, but she also had excruciating chest pain.

Right away, Tonya made an appointment with William Scott, M.D., Pediatric Cardiologist at Children's Health and Professor Scholar at UT Southwestern. Over the next few years, Dr. Scott monitored Lauren's heart. As she got older, the fast-paced rhythm started happening even when she wasn't playing sports.

"Her senior year of high school, Lauren told us she wanted the operation that fixes SVT," Tonya said. "She didn't want to go to college and be without the safety of being close to us and knowing someone would always be there to help her. It was a really responsible decision."

Soon after, Lauren came to the hospital for a Pediatric Radiofrequency Ablation. Dr. Scott sent a microscopic camera through a large vein so that when he got to the heart, he could find the exact spot that was causing the irregular rhythm. Then he used a small sensor to burn the problem cells.

"Sending your kid into surgery is never easy, but by the time Lauren had her heart surgery, we already had a lot of practice with her younger brother," Tonya said. "All of my kids' providers were my friends, teammates and mentors. Every time a parent asks me if I can trust this care team – I can confidently say yes."

Mitchell's rough start

Lauren was 3 years old when her little brother Mitchell arrived. Instead of watching baby yawns and small smiles, Lauren didn't get to know her brother outside of the hospital until he was more than 6 months old.

Immediately after he was born, doctors realized that Mitchell had a tumor in the third ventricle of his brain. They later identified the tumor as an immature teratoma, a rare malignant germ cell tumor. Mitchell's specific type of cancer is considered a newborn tumor, which can be difficult to detect in utero, but was clearly visible once he was born. Within hours of his first breath, Mitchell was being transported from the hospital where he was born to Children's Health. When he arrived, the care team immediately came together to create a surgical plan to remove the tumor.

"I knew every person who was tasked with keeping my child alive," Tonya said. "My emotions were pretty high."

In addition to the brain tumor, Bradley Weprin, M.D., Pediatric Neurosurgeon at Children's Health and Professor at UT Southwestern, also discovered that the tumor was blocking the normal pathway of spinal fluid, causing hydrocephalus. Hydrocephalus occurs when excess fluid builds up, in and around the brain, creating potentially harmful pressure inside the head.

"Either one of those can put a child's brain development, vision, cognitive and even life-sustaining functions into jeopardy," Dr. Weprin said.

The only way to prevent some or all those things was to operate as soon as possible.

Six days after Mitchell was born, Tonya and her husband once again held tightly onto the confidence that hundreds of parents had given her – the confidence that the doctors and nurses at Children's Health would take care of her son as if he were their own.

"As a caregiver, we ask parents to have a lot of trust in us, to care for the child they love more than anyone in the world," Tonya said. "Just like with Lauren, I was fortunate to be able to walk into a terrible situation and fully trust his surgical team and every nurse who was with Mitchell through recovery."

Challenge one: Remove the tumor and treat any remaining cancer cells

In the operating room, Dr. Weprin knew that a series of unknowns and challenges stood in front of him.

First, was the fact that Mitchell was a newborn.

"Babies' brains have a higher water content. They're mushy, like a ripe peach, and easily susceptible to tearing," Dr. Weprin said.

Babies' skulls also have a rich supply of blood. If there is a tear, they can lose blood quickly, which can be life-threatening.

Second, Mitchell's tumor was deep in the brain and in a relatively critical area. Tumors like Mitchell's can also be vascular, which means they can quickly spread to other parts of the body.

"We were able to remove the whole tumor, but we weren't out of the woods. We had to wait and see if his brain could handle re-establishing the pathway for spinal fluid to move around," Dr. Weprin said. "And Mitchell needed to begin chemotherapy."

As soon as he was out of surgery, Mitchell's oncology team at the Pauline Allen Gill Center for Cancer and Blood Disorders, led by Daniel Bowers, M.D., Pediatric Neuro-Oncologist at Children's Health and Professor Scholar at UT Southwestern, set out to start a rigorous therapy plan to make sure that the cancer wouldn't come back.

"We were able to take him home for a couple of weeks before chemotherapy started, but pretty quickly I could see his head started getting bigger, so we knew the fluid wasn't draining like it was supposed to," Tonya said.

Challenge two: Relieving the pressure on Mitchell's brain

After Tonya discussed Mitchell's cancer treatment with Dr. Bowers, she met with Dr. Weprin about treating the drainage issue. To correct this, a flexible tube called a shunt, would be placed at the base of Mitchell's skull to allow the spinal fluid to drain properly.

The team decided that Dr. Weprin would place the shunt before Mitchell's cancer treatment began.

"We had to get this surgery right because if the shunt failed, he would have to stop chemotherapy, which could affect tumor recurrence. Cancer treatment also lowers the immune system, and another surgery would put him at great risk of infection," Dr. Weprin said. "Collaboration is everything when it comes to patient care, especially when the risks are as high as Mitchell's."

Again, Tonya and her husband held onto their confidence in Dr. Weprin and his team.

"Through everything, I knew what was going to happen. But at some point, my nurse hat came off and I was just a mom. A mom trying my best to hold it together for my husband and sweet daughter as her baby brother faced his second brain surgery as a newborn," Tonya says.

A few hours later, Tonya was relieved when she saw Dr. Weprin come to meet her in the waiting room with a big smile.

"One of the best parts of my job is telling parents that surgery went exactly as planned. We made it over another hurdle and cleared him to start chemotherapy," Dr. Weprin said.

Challenge three: Complexities of cancer care and life after brain surgery

At only 30 days old, Mitchell had a shunt placed. Luckily, he sustained his strength after his surgery and was able to start his four-month chemotherapy treatment plan just a few days later.

Everything was going as planned until Mitchell turned 4 months old.

That was when he gradually stopped using his left arm and leg and completely stopped rolling to his left side. The team discovered that Mitchell had likely had post-operative hemorrhages, which occurred on the right side of his brain, and like seizures, impact the opposite side of the body. Right away, Mitchell began physical and occupational therapy with the physical and rehabilitation medicine team to help strengthen the left side of his body.

For the time being, Mitchell was in a good place. Dr. Weprin and Mitchell's entire care team reminded Tonya of what she already knew: They didn't know how Mitchell's speech or cognitive skills would develop.

Then when he was 4 years old, Mitchell started having seizures.

"After a few seizures, Mitchell started being aware of the symptoms, and as he would feel them come on, he would tell us, 'I'm going to raggle' – that was the word he used for seizure," Tonya said.

That's when Mitchell began to see Rana Said, M.D., a pediatric neurologist at Children's Health and Professor at UT Southwestern, who over the next eight years helped Mitchell stay on the right combination of medication to keep his seizures under control.

Instead of slowing down, Mitchell speeds up

Thankfully, as he got older, Mitchell's communication and cognitive skills developed successfully. And, thanks to occupational and physical therapy, his body grew strong and healthy as well.

"Starting physical therapy really young and staying with it helped his muscles continue to strengthen as he grew. He needed to wear leg braces for a few years and take seizure medication until he was 12. But otherwise, he had a pretty typical childhood," Tonya says.

After surgery at 8 years old to help strengthen his left leg, Mitchell found his stride. With that stride, he decided to participate in a community run that benefited Children's Health. His team name was Mitchell's Magic and the money he raised went to the Children's Health Specialty Center in Grapevine, where he received physical therapy.

It turns out, running was Mitchell's sport. Once he got to high school, he joined the track and cross-country team. His biggest accomplishment was fulfilling the coach's challenge of running 365 days straight. And of course, beating his own personal records.

"Mitchell is an amazing kid. I can't believe he's going off to college. There were so many answers we couldn't give Tonya – if he was ever going to walk or talk – and now he's a cross-country star," Dr. Weprin said. "When I'm having a hard day, Mitchell is one of those patients I think about for inspiration."

Ready to start his freshman year in college, Mitchell plans to pursue a degree in sports management. Also thriving at school, Lauren is studying to be a pediatric nurse. This summer she completed a nurse externship at Children's Health.

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