Drake assistant men’s basketball coach Matt Woodley follows the same routine every night. Just before he goes to bed, he checks on his 6-year-old daughter, Molly, and places his hand on her heart.
Just to make sure she is breathing.
When he wakes up, the first thing he does is check on Molly.
Just to make sure she is breathing.
He has done this for four years, ever since debilitating seizures forced the Woodley family into a silent reckoning. They know Molly as a fighter. She was born premature at 24 weeks, and she has fought all her life. But doctors say that brain bleeds she suffered at birth have led to the constant seizures, and that the only real hope to stop them is brain surgery.
Until that happens, the Woodleys must live with a horrible truth: Each seizure could kill Molly.
“It’s like …” Matt starts.
“Russian roulette,” his wife, Jennifer, finishes.
“It’s very real,” Matt said. “Everyone’s like, ‘Oh, she’ll be OK.’ No, she won’t.”
Not everyone understands what Molly goes through each time a seizure happens. She can feel them coming on. She finds her mom. Then she throws up. Her body stiffens. Her teeth clench. Her mouth foams. Her eyes focus off into the distance.
Jennifer administers one dose of medicine while monitoring her breathing. If her breathing slows or stops, Jennifer calls 911. It goes this way for 45 minutes or an hour, often longer. They end the same way, with Molly falling asleep. Then they repeat every few weeks, just as intense and terrifying.
Going through all this for so many years has changed everything for the Woodley family. Matt, who always wanted to coach, has shifted his priorities, because living his dream has only complicated matters. Since Molly was born, Matt has held four different jobs. Each move means a new hospital, new doctors and often the same litany of invasive tests and procedures.
Take his job as a special assistant to Kevin Stallings at Pittsburgh last year: Matt went to Pitt, in part, because the family believed the University of Pittsburgh Medical Center could offer Molly the treatment she needed.
“We don’t want to go through another year like this year. This is the trickle-down effect. It ain’t just about Kevin. It’s about other people. I know what this profession is. But I’m 41. I chased this Division I deal. I got into the pros trying to get into the NBA. I had some unfortunate circumstances that were out of my hands, and now it’s like, wait a second, what are we doing here? This isn’t about me. I don’t want to be painted as that father that was selfish.”
They did their homework on the doctors; they thought they had done their homework on the Pitt job itself. But Pitt was historically bad in 2017-18, and Stallings was fired after going 8-24, including 0-18 in ACC play.
Though head coaches get the headlines when they lose their jobs, assistant coaches must deal with the same uncertainty, doubt, anxiety and insecurity in the aftermath. Matt and Jennifer felt increasingly desperate during their final months in Pittsburgh, faced with the prospect of once again uprooting Molly from her care. Molly just wants to be a kid and do everything her two brothers and little sister get to do. But when Matt takes them all to the park and Molly can’t keep up and falls down, his heart breaks a little more.
Then the guilt sets in.
“We don’t want to go through another year like this year,” Matt said. “This is the trickle-down effect. It ain’t just about Kevin. It’s about other people. I know what this profession is. But I’m 41. I chased this Division I deal. I got into the pros trying to get into the NBA. I had some unfortunate circumstances that were out of my hands, and now it’s like, wait a second, what are we doing here? This isn’t about me. I don’t want to be painted as that father that was selfish.
“We’re changing care, changing doctors. We’re sitting in the hospital in Pittsburgh this fall when they’re doing all this to her head and I’m like, we’ve already done this. If we hadn’t taken this job, maybe we’d be further along. Maybe not, but maybe. I don’t think so. But that’s what goes through your mind.”
Jennifer offered her sentiment.
“It’s crushing to hear him say those things,” she said, “because you think ‘what have the last 10 years been for,’ and you know he’s settling, and we don’t want it to be on account of Molly.”
Matt took the job at Drake in Des Moines, Iowa, to partner with one of his closest friends, new head coach Darian DeVries, and to move his family back home to Iowa, where Matt and Jennifer grew up. Later this month, Matt will take Molly to the Cleveland Clinic, which they felt has the best pediatric epilepsy treatment, for an inpatient stay. Molly will go through another round of invasive tests, during which doctors will try to record the seizures in order to pinpoint precisely where they are occurring.
Based on the results, doctors will try to answer three questions: Is brain surgery needed? Will it work? Is it safe? Molly’s doctor, Ahsan Moosa Naduvil Valappil, said her case is “extremely unique” because of the struggles Molly and her family had to go through during pregnancy.
That is why Molly is a miracle.
In 2011, Jennifer found out she was pregnant with twin girls, Molly and Melanie. At the time, Matt was in his first season as the head coach at Division II Truman State in Kirksville, Missouri. Jennifer went in for her 20-week ultrasound and doctors discovered the babies had twin-twin transfusion syndrome, a rare condition in which identical twins share a placenta and their blood vessels are connected.
Essentially, one twin receives more blood than the other, causing uneven growth and development. Molly was the twin who was not receiving enough blood. After three failed procedures to fix the problem, doctors decided to try once more. Jennifer was at about 24 weeks, right around the time babies are viable outside the womb.
The night before the surgery, the head of the neonatal unit asked Jennifer a series of questions. One replayed over and over in her mind: “If you had to choose one baby to save, which one would it be?”
“There are questions you never think about,” Jennifer said, her voice trailing off through tears. “I chose Melanie. Because she was healthier.”
As doctors finished up the procedure, Melanie went into cardiac arrest. Doctors rushed to deliver the babies. Jennifer was knocked out for surgery. She woke up to her mother and seven doctors in white coats in her room.
“Was it Melanie who survived?” Jennifer asked.
“Molly made it,” they told her.
Melanie, born 1 pound, 1 ounce, had survived just a few minutes. Molly, also born 1 pound, 1 ounce, was fighting for her life. Her eyes were not fully developed, so they remained sealed. She had two brain bleeds. Her lungs were filled with fluid. Her kidneys didn’t work properly. Jennifer briefly saw her, but doctors had to transport Molly to a different hospital so she could receive the proper treatment in a neonatal intensive care unit.
They did not expect Molly to survive the ride.
Jennifer stayed in her hospital room, mourning the baby girl she lost. She held Melanie and said her goodbyes. The family made arrangements for a funeral, but Jennifer could not go through with it. They cremated Melanie. She rests in a silver urn with a pink bow on Jennifer’s dresser, with butterflies next to her. Jennifer has the funeral dress hanging in her closest, the tags still on.
Molly made progress, though it was slow and unsteady. On three occasions, doctors told Jennifer and Matt there was nothing more they could do for Molly. Each time, Molly fought harder.
At 5 months, she was discharged from the hospital with oxygen and an apnea monitor. Molly ripped those oxygen tubes out of her nose every chance she got. Slowly, she made strides. At 18 months, she learned to walk. She played with her big brother, Michael. She did gymnastics and loved music. Molly was developmentally behind other kids her age, but not by much.
Then, at 2½, Molly had her first seizure, lasting more than two hours. Molly was intubated in the hospital and placed in a medically induced coma to help assist in her recovery. After her second seizure also left her in a medically induced coma, she was diagnosed with epilepsy.
It was not until after her third seizure, at age 3, that Molly began to see a team of neurologists at the children’s hospital in Iowa City, Iowa. The physicians determined that the brain bleeds Molly had as a newborn left behind scarring, which was the most likely cause of her seizures.
Doctors treated her with anti-epilepsy drugs, but they quickly discovered the medications didn’t do anything to stop the seizures. Generally speaking, most seizures last less than five minutes. But Molly suffers from status epilepticus, a condition in which seizures last much, much longer.
“If you and I were to have a seizure for about two minutes, it’s the equivalent of running a marathon,” Jennifer said. “Can you imagine a little girl that weighs 30 pounds having a 30- to 45-minute seizure? It’s the most awful thing you can go through.”
Jennifer is on constant guard for seizures. Molly is not. On a recent day in Pittsburgh, Molly played with Michael inside their enormous playroom. Legos, dolls and trucks were scattered wherever they had stopped playing with them. Their younger siblings, Mackenzie and Miles, were staying with their grandmother, so the room was all theirs.
Molly wore a zip-up onesie with penguins on them. She had her short hair dyed blue because that is her favorite color. Her eyesight is so poor that the thick black glasses she wears help her see only slightly better. But that did not stop her from playacting with her princesses while Michael built a train around her.
“Oh my goodness, Michael!” Molly said with a short giggle as he circled around her. When it came time for medicine, they went down to the kitchen. Jennifer filled two large syringes with an anti-epileptic drug. “Put these in your mouth,” she said. Molly opened wide. “Down the chute!”
Molly swallowed with big gulps, then drank soda to wash it all down.
“What does it taste like?” Jennifer asked.
“Diet Coke!” Molly said proudly.
Molly wiped her mouth. She and Michael were given popsicles.
Molly’s hands have white, crisscrossing scars from all the IVs that have pierced her skin. The switch to the Cleveland Clinic has Matt and Jennifer newly optimistic. Same with Molly. She already loves her new doctor.
“From the preliminary data I have evaluated and looked at, I’m pretty confident that we’ll make a significant dent in the seizures, and hopefully completely stop the seizures,” Moosa said. “But we need more data to be certain about it.”
There are risks involved with surgery. Molly could lose peripheral vision in her right eye. But Jennifer and Matt believe they are worth taking. They’ve always spoken openly with Molly. She knows she needs brain surgery. She very much wants brain surgery, even though she hates needles and shots.
When the seizures are gone, the family will work on fixing her kidneys, and her lungs and her eyes. Their determination is strong because Molly is strong.
Matt and Jennifer each wear a pink bracelet with Melanie’s name and birthdate on it. Molly often talks about her sister. Sometimes she will say out of nowhere, “I miss Melanie.” They remain connected somehow. When it comes time to go to the hospital in Cleveland, she will make one small request.
“Can I take one of Melanie’s blankets with me?”