Isabella Santos Foundation Archives - Isabella Santos Foundation

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

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

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

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

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

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

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

9/23: Through My Eyes: Behind the Minds of a Family Who is Fighting a Terminal Childhood Cancer Diagnosis

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

9/22: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.

9/25: Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too

10/3: Through My Eyes: The Day That Made Me a Childhood Cancer Advocate

Through My Eyes: The Day That Made Me a Childhood Cancer Advocate

October 3, 2019/in ISF News & Updates, Through My Eyes: This is Childhood Cancer /by Rachel Wood

[#ThroughMyEyes | Rachel Wood] September 19, 2011… I accompanied Erin and Isabella to NYC for scans at Memorial Sloan Kettering. After a morning at the hospital we headed to Magnolia Bakery for a VIP baking experience… where this short clip above was taken.

In the clip you see Isabella and Erin baking cupcakes. What you don’t see is Erin’s shaking hands and the tears she is fighting hard to hold back. She had just stepped outside to take a call from the hospital asking her to come back to meet with the doctors right away.

On September 19, 2011 the Santos’ were told Isabella’s cancer had spread. It was in her head, bones, bone marrow, chest, abdomen… the disease was everywhere. The doctors explained that the surgeon would no longer operate and high dose chemo was not an option. The new disease in her head was bleeding and the immediate concern was swelling and seizures. The oncologist said to go home. Be with your family. Do things that make Isabella happy.

This is where MIBG therapy came in and gave 10 months of life and memories to Isabella and her family before she passed away from neuroblastoma on June, 28, 2012.

This NYC trip forever changed me. I don’t have a child with cancer and I don’t know what it’s like. But I watched it. I watched what it does, the pain it causes and the life it rips away. My eyes have been open to childhood cancer ever since.

Not everyone has a front row seat to the impacts of childhood cancer. I hope you are never given one. But that was my goal of the ‘Through My Eyes’ series, to help others open eyes, even a little bit, to what pediatric cancer is doing to kids, young adults and families. I normally spend quite a bit of time with cancer families, but the past 2 months I have spent that time asking the really hard questions, listening to the fears and pain. It has been the most rewarding yet most emotional taxing several months. I have talked, listened, planned, written & taken photos of cancer. I have lost sleep & dreamed about these kids and teens – awful dreams. I have gotten attached. But my emotional rollercoaster is nothing compared to what these warriors and their families go through every second of the day.

Thank you to those who opened up their hearts and homes to me specifically for this series. Thank you for letting me ask the really hard questions. Sharing awfully intimate details & thoughts. All to bring awareness to our supporters on what cancer has done. All in hopes that it will bring change.

On this last evening of Childhood Cancer Awareness Month, I beg of you to please not let a month or gold ribbon define awareness and action. Please continue to talk, share, volunteer, ask questions and give back.

Thank you for listening this month. We look forward to communicating how much this series raised for pediatric cancer research. If you feel moved to donate, we appreciate every penny and are humbled by your support.

Sincerly,

Rachel Wood
ISF Director of Marketing

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

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

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

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

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

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

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

9/23: Through My Eyes: Behind the Minds of a Family Who is Fighting a Terminal Childhood Cancer Diagnosis

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

9/22: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.

9/25: Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects Siblings Too

Through My Eyes: How a Little Sister’s Terminal Cancer Diagnosis Affects the Siblings Too

September 25, 2019/in ISF News & Updates, Through My Eyes: This is Childhood Cancer /by Rachel Wood

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 Family
Name: Tom & Lynn (parents), Kayla & Noah (siblings)
Daughter: Mackenzie, 4 years-old
Cancer: DIPG
Diagnosed: June 22, 2018
Treated at: Levine Children’s Hospital

4 year old Mackenzie was diagnosed 15 months ago with an inoperable, non-curable brain tumor called DIPG. We shared perspectives from her mom and dad on what’s going through their mind during scary and uncertain times: We Are Cancer Parents & Behind the Minds of a Family Fighting a Terminal Cancer Diagnosis. Read how Mackenzie’s terminal cancer diagnosis affects her siblings as featured on our social channels (Instagram & Facebook) on 9/25/19.

Kayla (12 years old) with little sister Mackenzie

[#ThroughMyEyes | Kayla Barron] “Empty. That’s how I feel. It’s not just one thing that makes me feel this way. Its many things stacked on top of each other to create one word. One word that means a whole bunch of things. One word with thousands of meanings behind it. One word that explains everything. It’s almost like being numb to a certain extent. Sometimes you feel and sometimes you don’t. Other times you choose how you feel. Are you going to brush off what’s bothering you, or will you choose to embrace how you feel?

Most of the time I don’t talk about it, mainly because most people wouldn’t understand and nobody really asks. And I think that’s one of the hardest things about being the sibling of a cancer patient. Mom and Dad are always focused on the sick child, then they have jobs to deal with, the family to feed, bills to pay. It’s not easy. Nobody said it would be. Eventually you get used to being overlooked. Not saying just because you’re used to it, doesn’t mean it doesn’t still hurt. Of course it still hurts, pain doesn’t just go away like that. It’s always there no matter how hard you try to cover it up. Pain will always be there, even if you got over it, even if it doesn’t bother you anymore, even if you forgot about it. That pain will always come back.

And in that moment, when the pain comes back, you just have to stand up look yourself in the mirror and say, “I believe in you”. Because you can’t just give up as soon as one thing knocks you over or one person says you can’t.

I know what it’s like to feel empty. Broken. Lost. It makes me feel like no matter what I do or say, I make things worse. I make things harder for everyone else. I feel like I try so hard to make everyone happy but in the end I always feel alone. Because I took all my happiness and gave it to other people, not leaving enough for myself. And that’s where it goes downhill. Where everything just seems to stop and you couldn’t care less about what happens next. Because in that moment, emptiness, becomes your only feeling. But even after this happens somehow, some way you still manage to put a smile on your face.”

Noah (14 yrs old) with little sister Mackenzie

[#ThroughMyEyes | Tom Barron] “I lost my father when I was 16, I’ve never truly recovered from that, I’ve fought my whole life trying to figure out why it’s bothered me so much… I never got the chance to make him proud of me. I don’t want Noah or Kayla to grow up wishing they had done something different.

Noah is high functioning Autistic and Aspergers; it’s hard enough for him to function in regular everyday life. I worry this tips the scales in the wrong direction and he chooses to give up instead of fight.

Kayla is a different child all the way around. She has passion, is artistic and outgoing. I fear she feels unheard, unwanted, unaccounted for, when in reality we spend effort to make that not true. I fear she takes her pain out on herself and not let us help. I fear she starts cutting again and we lose her too.”

[#ThroughMyEyes | Noah Barron] “I am heartbroken. It crushes me, emotionally, to know this horrible disease exists and little to no progress has been made to cure it. I constantly question in my head… how long does she have? How long until she shows symptoms? Why did it have to be her? And wondering if the tumor will grow. So for now I live in the moment and pray to God for guidance. I listen to Imagine Dragons, talk to my friends and my therapist to try and let out my pain.”

Noah (14 years old) and little sister Mackenzie

[#ThroughMyEyes | Lynn Barron] “I worry that I am not listening to them, that they feel left out and how is that impacting them. Most, if not all, of the focus is on Mackenzie. People often ask how Mackenzie is doing and just assume Kayla and Noah are fine. When in fact, I don’t think they are fine. I think they feel left out. They are hurting. They are watching their baby sister take medicine they know is not healing her, but merely keeping her tumor stable. I often wonder what they are thinking and feeling. They are two very different people.

Barron Family: Noah, Lynn, Mackenzie, Tom, Kayla (L-R)

Noah is on the spectrum. He is high functioning autistic / Asperger’s. Which means he is highly intelligent, can articulate thoughts well, but lacks in some social skills. He can get hyper focused on one topic and doesn’t always know when to move off the topic. He presents his own challenges because we often don’t know how he is feeling as that is sometimes hard for him to express. He sees things in black n white.

Kayla on the other hand, is beautiful, creative artist and can express her thoughts and feelings very well when she wants to. However, she internalizes a lot of her emotions as well. Especially when it comes to her sister. She feels left out and unseen. Her whole life she has been dealing with the focus primarily on Noah and his autism, as that has taken a lot of our attention. Then she gets hit with her baby sister having an inoperable, non-curable brain tumor and is most likely going to die in 12-18 months, according to the doctors. How would you handle that?”

[#ThroughMyEyes | Kayla Barron] “My thoughts are kinda fuzzy. I don’t try to think about it too much. But it’s always in the back of my mind. I’m just always worrying. Is this the last birthday I’ll spend with her? Will she get to go kindergarten? Will she reach my age? Is this her last Christmas? Will she make it to Halloween? What if something happens? What if I lose her? What will I do then? Will anyone care? Will they forget her?

I’m just so scared of what could happen. There are so many possibilities. You never know what’s gonna happen next. I just don’t want her to be in any pain if the time comes. I don’t even want to think that the time will come, but sometimes I do.

When nothing else makes me happy… she does, so what will happen when she isn’t here? She’s my best friend from day one. Even if she doesn’t understand half the time. I’m just not even sure what I’m gonna do.

What I am most scared about is if/when something happens there will be nothing I can do to help her and all I can do is sit there and watch her suffer. I’m also scared that I’m going to think it’s all my fault and I wasn’t a good enough sister. I’m gonna have to think about all the things I didn’t get to do with her. I just really don’t want to feel like I have nothing left again.”

[#ThroughMyEyes | Lynn Barron] “For both our children, I worry about how the experience of having a baby sister with a terminal illness is shaping them. I think about what lasting impacts this will leave and what scars will remain. Is this something they can turn from a negative, sad experience into something positive and impactful?

We all have choices. To look at this as a tragedy or as an awakening.

I don’t know how this experience is going to shape them as adults. Only time will tell. I pray, they are able to draw from this experience and turn it into an awakening, a movement, something that drives them to be better, to express kindness, to seek victory in the small things in life and ultimately to cherish every moment they have and take nothing for granted.”

No child should have to endure what Mackenzie might have to. No family should be on pins and needles every second of each day questioning if and when the cancer will start taking over. No sibling should be worried about watching their little sister suffer. It’s hard to read. But it’s this families real life on how childhood cancer has affected them. We applaud them for the courage to let our supporters in on their innermost thoughts and pain. This is childhood cancer. Are you aware now?

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

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

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

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

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

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

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

9/23: Through My Eyes: Behind the Minds of a Family Who is Fighting a Terminal Childhood Cancer Diagnosis

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

9/22: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.

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

September 23, 2019/in ISF News & Updates, Through My Eyes: This is Childhood Cancer /by Rachel Wood

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

[#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

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

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

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

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

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

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

9/17: Through My Eyes: Behind the Scenes With Charlotte Pediatric Oncologist, Dr. Oesterheld

9/19: Through My Eyes: What It’s Like to Help Kids Understand & Cope With a Cancer Diagnosis

9/20: Through My Eyes: What I See in Kids Fighting Cancer as a Pediatric Oncology Nurse

9/23: Through My Eyes: We Are Childhood Cancer Parents. We Are Not OK.

Through My Eyes: We Are Childhood Cancer Parents. We Are Not Ok.

September 22, 2019/in ISF News & Updates, Through My Eyes: This is Childhood Cancer /by Rachel Wood

Dear World,

We are childhood cancer parents, and we are not ok and we are very tired.

As childhood cancer parents, we receive many labels. Oh, how strong you are!! Oh, the ability to do hard stuff! Your family is so strong! Keep up the fight! I don’t know how you do it. I couldn’t imagine what you are going through.

Guess what? We are tired. We are weak. We are terrified. We don’t know how we do it. We don’t plan for the future like normal families, but we plan for the next treatment, the next hospital visit. We make bucket lists for them, seriously NO parent should be required to make a bucket list for their child, but we do so we can give them all that we have. We pull those 2nd, 3rd mortgages, empty the 401k and retirement plans, all in the hopes of giving them their life back.

We wear T-shirts with our kids names on them, and call them fighters and warriors. As ”cancer parents”, we have to pump our children full of toxic medicine, catch their puke in buckets, hold them down for pokes and dressing changes, send them off to surgery, just to cry in the corner of the waiting room.

We catch the wrath of all the anger they have, all of their frustration is pointed to us most days, and it’s the hardest thing to hear your child scream at you to stop and say they hate you for making them do this. We spend days, nights, weeks, months in the hospital, sleeping next to their beds in cots, or blue chairs that are so uncomfortable, surfing the web for success stories when we just can’t sleep, because we know that the nurse is coming in soon, or their results will be posted, and the beeping of their monitor, watching every single heart beat on that screen. This is our new normal from diagnosis day forward.

And God knows if we step out of the room for 10 minutes the guilt of leaving your child alone haunts you. We skip meals, showers, the list goes on. We never get a full night’s sleep. Ever. The guilt we feel for our other children having to watch their sister or brother go through all they do. It never ends. You make special trips just for their siblings to try and bring “normal“ back to them, but it will never be pre diagnosis normal ever again.

So, we aren’t strong. We are weathered. Beaten against the jagged, rocky edges of childhood cancer. We stand up each time, go at it again, because that it is what we do. We have to. And you can be absolutely sure, we don’t want you to imagine our lives, or put yourself in our shoes. It’s not something we want for any of you. We just want cures, and research, and treatments that give our children 100% chance to be adults and live their lives the way it’s supposed to be.

Instead of pulling them in little red wagons through the hospital halls. We should be going to the park, planning for them to attend preschool, signing them up for soccer or T-ball or gymnastics.

We want the world to pause, just for a moment, and acknowledge that we can do more for kids with cancer.

Then, maybe someday, we will only need little red wagons for beautiful, cancer free strolls to the swing sets of the world.

But rest assured, we are just like you in every way except for one, we are the parents of a child with cancer/terminal cancer and our only goal is to give our child, our family a chance at a normal life.

Tom Barron
(Dad to Mackenzie, diagnosed with DIPG at 3 yrs old)

******

Mackenzie was diagnosed at 3 years old with an inoperable, incurable brain tumor called DIPG. This week we will be sharing the perspectives of her mom, dad, brother and sister as they move through the fears and unknown of terminal childhood cancer.

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

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

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

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

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