Through My Eyes: Behind the Minds of a Family who is Fighting a Terminal Childhood Cancer Diagnosis

Through My Eyes: Behind the Minds of a Family who is Fighting a Terminal Childhood Cancer Diagnosis

Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.

Perspective: Cancer Mom & Dad
Name: Tom & Lynn Barron
Daughter: Mackenzie, 4 years-old
Cancer: DIPG
Diagnosed: June 22, 2018
Treated at: Levine Children’s Hospital

In April of 2018 Mackenzie fell off a stool and hit her head. After tests and an MRI, she was diagnosed with DIPG a year ago in June. DIPG (Diffuse Intrinsic Pontine Glioma) resides in the PONS region of your brain. There is NO CURE. NO CHANCE OF SURVIVAL and NO real treatment plan. Mackenzie has completed 30 days of radiation and is currently on a clinical trial all in hopes of slowing progression and stabilizing the tumor.

Mackenzie doesn’t have a bald head from chemo. She runs around with high energy like any other healthy 4 year old. Doctors gave Mackenzie 12-18 months to live… that was 15 months ago. During this time, the Barron family has learned what is truly important to them. They choose to hold tight onto their faith and belief in miracles. Mackenzie’s mom and dad were featured on our social channels (Instagram & Facebook) on 9/22 & 9/23/19 to share what’s going through their head as they move through uncertain times, We are Childhood Cancer Parents. We Are Not Ok. We also shared perspectives from her sister and brother perspectives: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too.

[#ThroughMyEyes | Lynn Barron] “It feels so surreal at times that we are in this world. To look at her and know she is terminal, I simply cannot comprehend. She looks normal. Acts normal. The ONLY thing telling me otherwise is her MRI scans and the diagnosis the doctors have given us.

Some days I think I am in denial of the truth. Most days, I know the truth that a monster is living in her head. Currently that monster is dormant to the best of our knowledge. It is not impeding any of Mackenzie’s functions: her eye isn’t turning in, she hasn’t lost her balance, she walks and runs normally, and the headaches haven’t started. The only pain she complains of is her feet hurting, which is a side effect of the drugs she is taking to keep the tumor stable. We know everything can change in a blink of an eye. Just like it did Friday, June 22, 2018 when our world flipped upside down.

I feel broken. My whole life changed in an instant.

I feel lost because there isn’t a protocol to follow, there is no journey that others have walked down that lead to her getting better and ultimately healed and becoming cancer free.

I hold tight to my hope and faith. Knowing we aren’t truly alone, that God is walking along side us. Sometimes carrying us.

I feel blessed. I have the privilege of being Mackenzie’s mom. Kayla’s mom and Noah’s mom

I feel different. Mackenzie’s story is different than any other we have read about.”

[#ThroughMyEyes | Tom Barron] “DIPG is commonly considered the most ugly, unforgiving, nastiest cancer on the planet. LOCKED IN, that’s how these kids pass away. They are completely aware of their surroundings and because of where this disease is located, they lose all functions that we take for granted; eye sight, the ability to swallow. The ability to talk, walk, sit up and move any fashion. It’s location and it being “diffused” makes it impossible to even attempt to remove.

I’m so scared she is going to suffer.

I’m sad my mouse will never get married, she won’t have children of her own, she won’t learn to drive, she won’t attend elementary school, no first day of school pictures, she will not have the life she deserves.

Failure and desperation sets in and my heart prays for this to all be a bad dream. All of these together make me feel isolated, all alone in a world I don’t understand, don’t comprehend.”

[#ThroughMyEyes | Lynn Barron] “I’m so scared of the unknown. Not knowing how this will end. What will our journey be? Will she follow the statistics like most DIPG kids do? One day waking up and she has trouble walking or starts having massive headaches. What then? What will we do? Will we follow protocol and put her on steroids because the headaches are too much for her to bear? Or is it better not to put her on steroids – which is the lesser of two evils. Neither one will heal her. That is the worst part of this. NOTHING we are doing will HEAL her!

I’m so scared her not growing up. Being robbed of watching my child grow. Missing all the key milestones you look forward to as a parent. The first day of Kindergarten, to every first day of school thereafter. Her first school dance, first boyfriend, prom, graduation, going off to college, getting married, having kids and watching her blossom into an amazing person she is destined to be.

I don’t want her to suffer or be in pain that I cannot take away or make better. She doesn’t deserve this, none of these kids deserve this.

What scares me more is losing her, watching her decline, watching her die, lying her to rest, and then living the rest of my life without my baby girl. I don’t think I can do that, I don’t want to do that. I don’t want to be those parents.”

[#ThroughMyEyes | Lynn Barron] “Because Mackenzie was 3 she was asleep for each radiation treatment. EVERYDAY for THIRTY days (5 days a week for 6 weeks) she was put under anesthesia! We call it silly juice – or happy gas depending on how she went under. She is a trooper – never once complaining. In fact happy to see her nurse Jodi and Dr Tim and Dr Sean – she still talks about them! She adores them.”

Mackenzie wore this custom molded radiation mask that was bolted to the table during her radiation treatments. Radiation is used to slow tumor progression.

[#ThroughMyEyes | Tom Barron] “It can turn family into strangers and strangers into family. The impact “cancer” has, not only on the one diagnosed, but also the nucleus family, is more powerful than you can imagine. There is this family out there that no one knows exist until you hear the words “your child has cancer”. A complete stranger was brought into my life that I needed for a very long time. This network of people become your strength. They along with my wife and kids help me hold onto my beliefs and my faith. You witness the best and worst of humanity. There are communities willing to come together for one little girl and give her family a day of pure love and these communities spark others to do more.”

Pictured here with Mackenzie is Ally Davis… a 2-time Hodgkins-Lymphoma warrior. Ally was initially diagnosed with cancer at 11 years old and is currently 15. Through her own foundation, Team Ally Foundation, Ally raises awareness for childhood cancer and wants kids fighting to know they are not alone in their fight. “Mackenzie was our 2nd ever Team Ally kid. They’ve since become family! Mackenzie came to visit Ally several times while she was inpatient. Definitely helps put a smile on her face.” -Ally’s dad

[#ThroughMyEyes | Lynn Barron] “Knowing she is terminal according to what we know about DIPG today, I take every day, every moment and try my best to record it, to etch it in my memory. Especially the little things we take for granted. I try and absorb every sound, every expression, every word she is saying. Closing my eyes soaking in the moment. It feels like a movie reel, and slow motion at times. I just want time to freeze so I can capture every detail, every color and every movement.

Sometimes a fleeting thought will race across my mind, ‘Is this the last birthday party she will attend being a happy healthy kid?’ ‘Is this the last time we go to Carowinds?’ ‘Or our last beach trip?’ ‘Will she wake up tomorrow and suddenly have trouble walking?’ Because that is what this monster does, it awakens and the next thing you know your child is in pain, has trouble walking or talking, and then your world changes and is flipped upside down again.

The challenges you experience will be different, new decisions will need to be made. What those decisions will be and how we will respond to them we do not yet know. I pray, we continue to be different. That we don’t walk down that path. The reality is, based on historical data, we very well might. I however choose to believe and know in my heart our story is different. Mackenzie’s story is different. That God has great plans for Mackenzie and my family. Plans to prosper us and not to harm, plans to give us a future and a hope. (Jerimiah 29:11) I will continue to believe and hold onto that truth.”

No child should ever endure what might possibly happen to Mackenzie. No family should ever hear the words – your child has cancer and there’s nothing we can do. There’s no cure – no hope. We have to bring change to rare cancers like DIPG. Are you aware now?

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*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES

9/2: We Have Stopped Making You Aware

9/3: Through My Eyes: This is Childhood Cancer

9/3: Through My Eyes: What Cancer Leaves Behind

9/4: Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior

9/6: Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom

9/8: Through My Eyes: Week 1 Results

9/9: Through My Eyes: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

9/11: Through My Eyes: What It’s Like to be a Young Adult Living With Cancer

9/13: Through My Eyes: What It’s Like to be a Young Adult Supporting a Loved One With Cancer