Through My Eyes: Pediatric Brain Cancer Warrior Mom Manages Unusual Balancing Act Among Siblings
Written by Rachel Wood (Marketing Director) & Mary Beth Baucom (Cancer Mom)
“Through My Eyes” is a series in which those affected by childhood cancer share a behind-the-scenes look into the ripple effect cancer has in their lives. Our goal is to raise $50,000 for rare pediatric cancer research in the month of September. Become aware, give monthly or donate. [Presented by Atrium Health Levine Children’s]
- Perspective: Cancer Mom
- Name: Mary Beth Baucom
- Son: Waylon, 7 years old
- Cancer: Highgrade Midline Glioma
- Diagnosed: 9.5.2019 at 5 years old
- Treated at: Atrium Health Levine Children’s
When you thought it couldn’t happen to you:
“He just wasn’t himself – you could tell it in his eyes something wasn’t right. Mom instinct, and maybe having some medical background myself too, I knew it wasn’t something minor to brush off. After not being able to shake that feeling and looking up symptoms, etc – I already was fearing the worst. I had actually found a story online of another kid with a brain tumor and his symptoms were almost identical. I didn’t sleep that night. I took him to his primary care provider the next day and requested a head scan. We were admitted to Levine Children’s that night and stayed for the next week. Our worst nightmare came true. I had really prayed I was just being overly paranoid, however I am glad we went when we did.”
9.5.19 at 5 years old Waylon was diagnosed with Highgrade Midline Glioma after months of headaches, vomiting and double vision. After a CT scan and a MRI, significant hydrocephalus by an unknown factor was found blocking the flow of cerebrospinal fluid. He was admitted to the ICU and had an external drain placed in his head. This first hospital admittance required several days for labs, scans, brain biopsy, and a permanent shunt placement. Once Waylon healed from the surgeries, he completed 6 weeks of daily radiation treatments to his brain. He continues his cancer care at Levine Children’s while undergoing a clinical trial out of Cincinnati Children’s for daily oral chemo drugs.
Waylon’s tumor is inoperable, but the good news is, it is currently stable. He is such a happy kid and is always thinking of others, despite his situation. He acts like any other 7 year old and is a NERF Gun expert. If you ask him what he wants to be when he grows up? He will tell you… “a Police Officer, of course!”
Gliomas are tumors of the glial cells, cells found in the brain and spinal cord. They are ‘high-grade’ because the tumors are fast-growing and spread quickly through the brain tissue making them hard to treat.
“I think my daughter having spina bifida in a strange way helped prepare us for dealing with my son’s cancer diagnosis. Even though they are nothing of the same magnitude, we weren’t total strangers to medical procedures, appointments, specialists, hospitals etc. I just do what I have to do.They each have specific needs that are different. I think that’s the most challenging, trying to balance who needs what and what is most important in that moment. It is a rare and unique situation for sure that nobody would ever expect to be in. So we just do our best and take it day by day.
Waylon and Rosie have the sweetest relationship. Of course they fuss and fight, but they miss each other when they are apart and always think of the other and do things for each other. When they both had shunts in their heads, they talked about their matching bumps. They don’t know any different, so they look for the best in every situation. Both my children are my heroes. They never complain ever. I am one proud mama.”
Waylon’s sister Rosie is 4 years old and was born with spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly. She is presented with several challenges including tibial torsion meaning her lower legs turn inward. She also has bladder and bowel issues. Good news, she can walk, run and climb with no problem, but will eventually require surgery to correct it. Rosie sees 3 different specialists (urology, orthopedics, neurosurgery) and ironically, both of them see the same neurosurgeon. The bond between this brother and sister is quite extraordinary and connects them in a most unusual way.
When stable is your favorite word:
“I don’t want life to revolve around cancer and I don’t want his tumor to be what defines him, so we don’t let it. We live day by day, we just have to! The unknowns of the future with this cancer diagnosis are terrifying, but we are hopeful and try to stay positive always. It is always in the back of my mind, but we try to just live as “normal” as possible and not dwell on the negative. We are so thankful he is doing well now, so that’s what I have to focus on.
Every child’s situation is so different. When it comes to pediatric brain tumors, even in this day and age there are still a lot of unknowns. Well meaning people always want to compare to someone else they know of who had something similar but the same type of diagnosis can still mean very different things. Waylon’s tumor in particular is very unique – it can’t be compared to anyone else’s. And that is scary.
But for now, we focus on the day in front of us. To see Waylon now, you wouldn’t know there is anything going on. He is doing really great – he has gotten so used to scans, and taking “naps” as he calls it (anesthesia) every 3 months and it doesn’t bother him at all. He never ever complains, even when he has every reason to he doesn’t.
Waylon just turned 7 and his latest scans showed the tumor has remained stable, so we focus on that! And I focus on what we enjoy most…the little moments, the hugs and snuggles when we first wake up in the morning, the laying in bed watching cartoons with my kids, nerf battles with Waylon and dressing up baby dolls with Rosie. And Waylon focuses on what he enjoys most… his nerf gun collection and his family!”
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*Photos courtesy of Mary Beth, Waylon’s mom. Photos were taken before the coronavirus pandemic and may not reflect current health and safety policies.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES