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Through My Eyes: Final Results

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. 

Remember, it’s not about a month or a gold ribbon…

It’s about Isabella who fought neuroblastoma 5 times and ultimately lost her fight at age 7.

It’s about Madison who just relapsed from osteosarcoma when a tumor was found in her lungs. First time diagnosed, cancer was found in her femur. 6 years old.

It’s about Corey who is fighting stage 4 ewings sarcoma and the doctors recently discovered another spot on his pelvis. 20 years old.

It’s about Merritt who is enduring 42 weeks of chemo due to rhabdomyosarcoma. 2 years old.

It’s about Nicholas who just had a hip replacement because osteosarcoma was found in his bones and lungs for a 2nd time. First time diagnosed, cancer was found in his knee.17 years old.

It’s about Brinn who just finished radiation and moves into phase 3 of her neuroblastoma treatment. 2 years old.

It’s about Max who just learned he is in remission from neuroblastoma, but still has a long road ahead of him with immunotherapy and therapy for how the drugs have affected his mind and body. 3 years old.

It’s about Mackenzie who was diagnosed with DIPG and the doctors gave her 12-18 months to live. 3 years old.

It’s about all the other kids fighting cancer past and present. 

It’s about all their moms and dads who would change places with their child fighting cancer in a heartbeat. Just to remove their pain.

It’s about all the siblings who have been affected by cancer just as much. And forced to watch their brothers and sisters suffer like no-one should.

It’s about all the caregivers and loved ones who silently cook meals, do laundry and bring comfort to kids, young adults and their families fighting.

It’s about all the oncology nurses, child life specialists, pediatric oncologists and everyone on these kid’s cancer care teams invested in their childhood cancer fight day and night.

It’s about listening and being aware.

It’s about bringing kids with cancer hope.

It’s about funding more treatment options.

It’s about ultimately finding a cure.

Thank you for listening, engaging and sharing this month. Thank you for donating. In the month of September, we raised $26,499.95 through the cancer warrior #ThroughMyEyes perspectives. We reached over 300,000 people on social media. We will continue to bring you updates on not only these kids, families and loved ones, but many more. Please continue to listen, engage and share. We count on you to help us open as many eyes as possible.

#ThisIsChildhoodCancer

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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

9/15: Through My Eyes: Week 2 Results

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.

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

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: We Are Childhood Cancer Parents. We Are Not Ok.

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. 

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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

9/15: Through My Eyes: Week 2 Results

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

Through My Eyes: Week 2 Results

We hope you are taking the time to read our Through My Eye series this month.  Our month-long childhood cancer series gives you an inside look at what it’s like for kids fighting cancer, their families and those fighting for them.  

Thank you for your support… keep sharing! So far we have raised $15,016 & reached 125,485 people on social this month. We appreciate the action taken and hope to inspire more.

These cancer warriors & their families hear you. They feel the support. We can’t tell you how much little pushes can do in their fight.

“I’ve been honestly overwhelmed by the support, some even from personal groups that followed the page and contacted me or my mom afterward.“ -Nicholas

“To be so young and to be relentlessly committed to each other through THE hardest thing ever is a testament to not only your love for each other,but also your character as individuals. Congratulations on your engagement, Corey and Blythe!” -Paula Takacs Foundation

Let’s keep going, help us do more! Share & Donate.

WEEK 2 PERSPECTIVES:

Monday 9.9: Behind the Mind of a Teenager Fighting Cancer & Social Anxiety

Wednesday 9.11: What It’s Like to be a Young Adult Living With Cancer

Friday 9.13: What It’s Like to be a Young Adult Supporting a Loved One With Cancer

This week we are sharing perspectives from Levine Children’s oncology staff who are invested in working with kids fighting cancer day in and day out. See what it’s like to be a Pediatric Oncologist, Child Life Specialist & Nurse. Perspectives start Tuesday with Levine Children’s taking over our social accounts.

Other Ways to Take Action This Month

 Become an Awareness Ambassador

 Register for the ISF Race, 9/28: 5kforkidscancer.com

WEEK 1 RESULTS

Through My Eyes: What it’s Like to be a Young Adult supporting a Loved One With Cancer

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. 

Corey is fighting relapsed stage 4 Ewing’s sarcoma at 20 years old. Being diagnosed with cancer has taught Corey to enjoy every part of life, because tomorrow is not promised.  Corey proposed to his girlfriend Blythe on August 5th, 2019. She said yes.

There is no worse feeling in the world than for someone you love to be suffering from cancer. You want to fix it.  Make it go away. But all you can do is love them. Blythe was featured on our social channels (Instagram & Facebook) on 9/13/19 to share her fears, her frustration and the thoughts going through her head and heart as she supports the one she chooses forever with.

I Choose Forever

“When Corey was first diagnosed with cancer in the fall of 2018 we had only been dating for two weeks.  As awful as it sounds, I didn’t know if I was supposed to stay with him. I didn’t think I was strong enough to go through everything. Meanwhile, I knew that I truly did care about him.  I decided to stay… no matter what happened. 

On the other hand, I knew I was terrified of losing him. I thought that Corey was going to end things with me because he wouldn’t want to put me through everything that comes with cancer. Or that he would think that I would not want him because he was sick. That was not what I wanted. I was even more afraid Corey was going to die… he wasn’t in the best physical state. 

When Corey was first diagnosed I barely knew his family. As a matter of fact, I had only met them a handful of times. I had no idea where my boundaries stood with him and his cancer. Would I get on their nerves visiting the hospital everyday? Should I visit every day… was that my place? Did they like me? 

I sat with him in the hospital every day with anxiety covering every inch of my body from the moment I got there in the morning until the moment I left at night.”

There is no worse feeling in the world than for someone you love to be suffering from cancer. You want to fix it.  Make it go away. But all you can do is love them. Today, Blythe shares her perspective. She shares her fears, her frustration and the thoughts going through her head and heart as she supports the one she chooses forever with.

One Day at a Time

“I’m lost at what the next steps are in Corey’s treatment. At the moment we have no certainty in what’s going to happen next. I am the type of person who likes to have a plan, but with cancer… there isn’t a plan. Sure the doctors might have their “plan” but that has no guarantee. With cancer things change all the time. 

At the beginning… Corey’s treatment was supposed to take 9 months to a year. That changed very quickly because he could not even meet the platelet requirements in time for his second treatment.  Treatments moved out to every three weeks. Eventually, treatments had to be moved out even more. Now we are to the point where we have no idea when he will receive treatment based on weeks. 

A curveball was thrown to us in July when we found out that Corey relapsed. Within less than an hour of being readmitted to the hospital and this diagnosis, Corey began to lose feeling in his legs due to the new lesion on his spinal cord. Corey had surgery to remove that tumor the next day. 

After this surgery Corey temporarily lost the ability to walk and the use of his bladder. The doctors set a new plan, but we still don’t have a timeline.  We still truly do not know what is next. 

I have had to learn to take things one day at a time.”

I Watch the Good. Bad. Ugly.

“I’m with Corey most days, I see everything. I detect the aggravation in his face when he can no longer do the things he once could. I witness his friends not inviting him to do things because he can’t stay out as late as them. I notice the exhaustion that swallows him up even though he tells you he isn’t a bit tired. I observe part of his confidence being ripped away as his hair falls out. I look at the tears that roll down his cheek as he worries about the results from the MRI and bone marrow test that we will receive the next day. I view his frustration as he can no longer remember the things he once could. I see the pain that covers his body after the surgery that was necessary to save his life. 

On the other hand, I look at the joy in his face when he gets to go home after a long hospital stay. I listen to him talk about all the things he has to look forward to. I see his excitement when he gets new parts for his truck. I stare at the thrill that is brought to him by watching the Carolina Panthers play. I view his passion for hunting as the season rolls around.  I spot the smilies his dog, Stella brings into his life. I recognize the hope that is brought to him through cards people send. I admire his determination to beat cancer. 

I watch the good. I watch the bad. I watch the ugly.”

No Timeline

I’m lost at what to do and where to go to school. When Corey was originally diagnosed with cancer in November I was attending East Carolina University, ECU, as a Nursing Major. ECU is approximately 4 hours away so when Corey got sick I decided to finish the semester and come home. I figured it would be best because I missed a total of 3 weeks his first hospital stay. I wanted the ability to be with him and support him day in and day out throughout this journey. When I returned home I enrolled in our local community college to work on my Associates in Science so I wouldn’t get behind and could transfer to a University when all this was done with. Here I am in my sophomore year and I have no clue what to do about school. I have no idea if I should go back to a four year college and receive my BSN or whether to stay at a two year and get my RN. 

I have no idea what to do because we have no timeline.”

I’m Lost

 “I’m lost in when we should get married. In August Corey and I got engaged. We have people ask us all the time if we have set a date. Well that’s a good question… but the answer is no. I hate being asked this question because I don’t know what date to set. 

You can’t plan a wedding when you don’t know what will happen. I have no idea what date to set because we don’t have specific dates for treatment or can’t predict what days Corey is going to feel good or feel bad. Even more, I don’t know when Corey will be back to work. For all I know Corey could die, as hard as it is for me to say… it’s true. Then I would be left with a venue, a photographer, a cake, a dress, and everything else on that day with no one to use it with. 

That thought frightens me… setting a date and not having Corey there for it.

This could happen to you or your child.  We were normal teenagers one day and the next we were dealing with cancer.  Do not think for a minute it will not be you because it can be in the blink of an eye. Never in a million years did I think our life would be the way it is right now.”

19 years old. She’s scared and lost. But she fights alongside Corey to help him stay positive. Childhood cancer affects not only the children and young adults fighting for their lives, but those fighting next to them.  Thank you to Blythe for her honesty. It’s real. It’s raw… just like childhood cancer. Are you aware now?

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All photos/videos courtesy of Blythe. 

*** 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

Through My Eyes: What My Child Thinks about Cancer, What Really Scares This Cancer Mom

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
  • Name:  Dianna Lariviere
  • Son:  Max Lariviere
  • Cancer: Stage 4 High-Risk Neuroblastoma
  • Diagnosed:  08.05.18
  • Treated at:  Levine Children’s Hospital

Max has had a rough year with many setbacks, delayed treatment schedules, prolonged hospital stays and high anxiety. These are just a few thoughts from her son that scares this cancer mom. Dianna was featured on our social channels (Instagram & Facebook)  on 9/6/19.  It’s real and it’s raw… just like childhood cancer.

 My Child Now Wants To Keep His Cancer… 

He lost his friends because of his cancer and his new friends, his nurses, he will lose, when it is gone.  He will be 4 in October. So now he has to see speech therapy to retrain himself that it’s ok to eat food by mouth, he will need speech therapy for hearing loss and he will most likely need therapy to realize that he does NOT want to keep his cancer.  All he knows are these nurses. Those are his friends because he’s been isolated for a year now, and it’s not over. A 3 1/2 year old thinks this way. Max is pretty advanced. He knows exactly what is happening to him and that’s what scares me. He’s not going to forget all of this.

It’s All My Fault…

He’s stuck in the house all the time like bubble boy and has no childhood.  It’s just awful. He says “It’s all my fault” and “I’m sorry” all the time. He thinks the cancer is his fault and shuts down when we try to talk about anything.

 I’m Never Going to Get Better…

“I’m never going to get better.” – Max

That’s how our conversation home from clinic today began. So much emphasis is placed on the physical side effects of cancer and not the psychological. I can’t tell you how many times people have said Max won’t remember half of what he’s going through. They are wrong. He was almost 3 when he was diagnosed. He’s going to be 4 next month. He has spent the past year living in a hospital… living a complete nightmare all while in his toddler years, when developmental stages are so crucial.

People don’t think a child Max’s age can have severe anxiety or PTSD but they can, and he does. I only hope one day he can have less of it, that we all can have less of it, but he has to live with this for the rest of his life as well. Every what if.

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Photos courtesy of Dianna Lariviere. You can follow Max’s journey with neuroblastoma on his Facebook Channel Max’s Fight With Neuroblastoma

*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER

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 Rhabdomyosarcoma Warrior