On April 16th, 2018 David Jr. came home from school saying that he had hit his head and he had a headache. Liz recalls that he was acting silly and holding his head to one side, which she thought may have been related to David Jr having torticollis as an infant. She took him to a pediatrician that afternoon where she was given instructions to watch him that night and bring him back the following morning if things still seemed unusual. “He was acting super silly at the pediatricians office,” Liz said.
The next morning David Jr.’s face seemed to droop on one side, so Liz took him back to the pediatrician. When the doctor checked his muscle tone by tapping his knee and elbow, his leg shot out and his fingers flared in a response. This was dramatically different from anything Liz had seen before. She was told to take David Jr. to the emergency room. On April 17th, Liz and David Turner received some of the worst news parents can hear, their 6 year old son David Jr. had a brainstem tumor. On May 1st their whole lives were turned upside down when it was confirmed that David Jr. had Diffuse Intrinsic Pontine Glioma.
Before receiving confirmation of the DIPG diagnosis, Liz and David had bought tickets to Thunder over Louisville, the kick-off event to the Kentucky derby. It was their first year ever going and they discharged them from the hospital so they could go. They went to the airplane show, the science center, made their own rocket and launched it, and at night there was a big firework display. At the end of the day David Jr. turned and looked at Liz and said “Mommy, today was the best day ever. I wanna come back next year”. That sparked their new catchphrase: “Make every day the best day ever.”
The initial shock, confusion, and sadness of the diagnosis slowly dissipated and turned into working towards making everyday the best day ever. Quickly after the diagnosis, David Jr. started radiation therapy and every day after radiation Liz and David took David Jr. out to do something fun. One day they made a pokemon at build-a-bear. Another day they did special events with law enforcement and the FBI. Sometimes they go to Orange Leaf and get ice-cream. Regardless of what happened that day Liz and David made it a point to do something that David Jr. wanted to do.
Over the years, David Jr. has done 5 courses of radiation, 2 forms of chemotherapy, steroids, and physical therapy. Liz and David saw the first shrink of David Jr.’s tumor on July 23rd, 2018 and the tumor remained stable over the next few months. As of April 17th, 2021 David Jr. will be going three years strong since his diagnosis. “Our DIPG diagnosis doesn’t define us,” David Jr. says. Liz, David, and David Jr. live their lives to the fullest. David Jr.’s father brought up how there have been times where they are spontaneous and say “Let’s go on a trip,” and the very next day they’d go. “Sometimes we just pack up the van and drive out of town,” he noted. They have gone to Paris, Hawaii, Denver, Alaska, California, Florida, and more!
Liz also touched on how difficult the pandemic has made things such as MRIs and doctor visits for pediatric cancer patients. For David Jr., all of his supportive appointments, such as physiotherapy and specialist appointments, were cancelled. “That’s hard because everytime we go to the doctor they do an assessment to gauge his strength and abilities to look for changes. But then you consider without seeing the doctor the changes might show up more drastically than gradually,” Liz discussed. While David still had the ability to go get scans, Liz pointed out how many of the parents she talks to from other states have had MRI’s cancelled which is key in tracking progression of fast-growing tumors such as DIPG. While their focus was safety during the pandemic, Liz felt like everything was shifting beneath them. “I think our fear was how the pandemic is gonna change treatment, is it going to take away opportunities for trials?,” she mentioned. Despite this fear, Liz, David, and David Jr. just want to protect everyone in this pandemic. Thus, so that everyone remains healthy, David Jr. and his family have always been big proponents of wearing masks. “It would be unfair if I don’t wear one,” David Jr. stated.
After going through a DIPG diagnosis, Liz wishes people realized how often kids are diagnosed with brain cancer. “There is another boy in his school that also had a brain tumor, a different kind, but still two first graders at a school getting diagnosed is serious,” Liz stated. Awareness, funding, and research are key in illnesses such as brain cancer and less well known types such as DIPG. This is why David Jr. and his family have strived to help advocate for childhood cancer. “We’ve been to the state capital a couple of times now and talked to governors and senators, getting the word out about DIPG and helping spread awareness for pediatric cancer funding,” Liz says. David Jr, Liz, and David along with the Governor and Senator of Kentucky helped declare May 17 as DIPG Awareness Day!
David Jr. is a caring, loveable kid who is fighting hard against DIPG. His story is incredible and the way he and his family live every day to the fullest inspires those around them to “Make everyday the best day ever!”
To see more of David Jr.’s story check out the links below.
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David’s Adventure DIPG Facebook
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