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Through My Eyes: What It’s Like To Be a Young Adult Living 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. 

  • Perspective: Young Adult
  • Name:  Corey Morgan, 20 years-old
  • Cancer: Stage 4 Ewings Sarcoma, relapsed
  • Diagnosed:  November 2018, relapsed July 2019
  • Interests: Fishing, Hunting, Carolina Panthers football
  • Feels:  Unlucky

Corey was featured on our social channels (Instagram & Facebook) on 9/11/19 to share what it’s like to be a young adult living with cancer.  Learn how his life has changed, what keeps him strong and what cancer has taught him.

 “It was a pain I had never felt before. I had pain in my bones, in my knees, ankles, back, elbows, even in my jaw. I had pain everywhere.  It hurt so bad I could hardly move or even talk.”

Corey’s pain lead to the discovery of stage 4 ewings sarcoma in November 2018 at 19 years old. He was diagnosed with a primary tumor on his adrenal gland, which was surgically removed and he started chemotherapy.  In July 2019, the pain returned and a tumor was found on his back pressing on his spinal cord. When this tumor was surgically removed, Corey temporarily lost his ability to walk and use his bladder. More tumors were found on his left arm, sacrum (which is part of the back), ribs and pelvis. Corey has undergone radiation and currently waiting for what the next step in his cancer treatment plan will be. 

Losing Control

“It’s difficult when your body won’t do things it used to do.  It’s even more difficult when you lose control over it. Losing the ability to walk was the hardest. I even lost control of my bladder. 

Cancer changed my ability to do most of my favorite things.  My absolute favorite thing is hunting. I like fishing. I also like to work on stuff with my friends, like fixing something that broke on a vehicle or working on four-wheeler or just about anything we can get our hands on. I like riding four- wheelers and I love diesel trucks (Ford in particular!).  

Since being diagnosed with cancer I’m not able to hardly do any of that, especially not alone. My body just can’t do those things… I physically can’t or I’m no longer strong enough. Just the other day my dad and friends had to fix the steps on a deer stand to make it easier for me to get in and out easier. Every time I would go fishing on my boat someone would have to be with me in order to load the boat back.  I can’t ride four wheelers due to the risk of wrecking or somehow getting hurt. 

But the biggest thing cancer has changed is my ability to work.   It sucks being stuck at home as a young adult, not able to make money and live the dream life I wanted to. I’m not able to buy a house and move out. I’m not able to take the next big step with my fiancé that we would love to do. There is nothing that I once was able to do that I do exactly the same.

Cancer changed my ability to be independent like other young adults.”

My Rock

“She is the reason I get out of bed in the morning. She’s the reason I continue to keep a positive outlook on life. Blythe is the reason I still fight! 

After I was diagnosed I never expected her to stick around since we were so young and still have so much life to live. But she did and that’s when I knew she was the one. She has given up just as much as I’ve had to just to be with me. She has given up most of her social life, where she wants to go to school, her family time and the biggest thing… she has given up her freedom. We don’t get to run around wherever we want like most teenagers are able to. We can’t go out with friends like we once could because I’m not able to do a lot of things they can. 

She’s been right by my side through it all. The good the bad, everything! It means the world to me to know that I always have her to be here for me! Blythe gives me hope, every time I get down or feel like giving up she’s right there to bring me back up! 

Cancer hasn’t been all bad for us, as crazy as that may sound!  I believe it has brought us closer and has helped show us a different kind of love that not everyone gets to experience. And the fact that we get to experience it at such a young age is amazing. 

I was lucky enough to to propose to Blythe August 5th 2019… it was probably the greatest moment of my life. To finally get to call her my fiancé meant everything to me and makes me the happiest person in the world.  Blythe is my world!”

Daily Decisions

Everything in Corey’s life quickley became about what doctor to see next, labs, and transfusions.  Daily decisions look different too. Before being diagnosed with cancer, decisions would include who to go fishing with over the weekend and where to watch the Panther’s football game.

As a young adult over 18 with cancer, Corey now has decisions to make like what is being discussed here… who he wants to grant as his power of attorney. Decisions no 19 year old should have to make.

What Cancer Has Taught Me

I never would’ve imagined it would happen to me, but it did. I was a normal teenager living my life… the next thing I know I’m laying in a hospital fighting for my life and leaving there not remembering anything about those 2 long weeks.  I felt unlucky. I was finally becoming a young adult, becoming a little more independent and not having to rely on my parents as much. I felt unlucky because everyone always asked “why me?”, and that’s exactly how I have felt for the longest time. I’m not able to do things that I at one time I took for granted. 

I finally realized that we can’t control what cards we are dealt, so just enjoy what you have because someone always has it worse.

Being diagnosed with cancer has taught me to enjoy every part of life. Tomorrow is not promised, things can change in the blink of an eye. So never take anything for granted, soak up everything life has to offer, make the most out of everything you go through.

Love and enjoy time with your family, your friends, girlfriend, boyfriend, whoever it may be! My family has been great through this whole process… taking time off work, paying bills and doing everything they can to take care of me! Not only just my mom, dad, sister and fiancé. But my grandma, aunt and uncle, cousins, and friends. If it wasn’t for all of them helping out we wouldn’t be where we are right now! 

Live in the present and not the future, and take things day by day! Life is much more enjoyable that way!”

Corey turned 20 on September 1st and cancer abruptly opened his eyes to the more serious aspects of life… maybe even before he was ready. But he accepts the reality and chooses to enjoy life. Enjoy the small moments, be present and cheer on those Carolina Panthers. His positive outlook is simply inspiring… we hope it will make you stop and think. It did for us. Take a few minutes to read his perspective. It’s real. It’s raw… just like childhood cancer. Are you aware now?

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All photos/videos courtesy of Corey’s family. 

*** 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

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

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 Teen
  • Name:  Nicholas Haag, 17 yrs-old
  • Cancer: Stage 4 Osteosarcoma, relapsed
  • Diagnosed:  2016 at 13 years old. Dec 2018 relapased in hip & lungs
  • Treated At: Levine Children’s Hospital
  • Feels:  Terrified & Exhausted

Nicholas was featured on our social channels (Instagram & Facebook)  on 9/9/19 to share what it’s like being a teen with Asperger Syndrome fighting cancer. It’s real and it’s raw… just like childhood cancer.

My Name is Nicholas and I have stage 4 osteosarcoma.  Oh, and Asperger Syndrome. That too.

“How does it feel being a teenager fighting both cancer and a social anxiety disorder?  Terrifying and exhausting. After I was diagnosed with cancer, I didn’t feel the effects immediately. But they were certainly profound when I returned to school.  I was never the type to have panic attacks before, but I certainly did when I returned. They were bad, especially in the hospital environment – and while that’s cooled down some… I still get panic attacks.  Especially in situations when my counts are low.

Panic attacks are strange. You’re convinced something is wrong with you. And the physical symptoms are similar to if something is actually wrong with you. It becomes reasonable in your mind to connect the two. Even though I’ve become better at recognizing them, they are still a pain in the ass and are frightening to actually experience.

For awhile I couldn’t purchase something at the store because I felt unfamiliar with everything – for worry I might screw up. I don’t really know sometimes what I’m supposed to do socially, I’ve slowly learned.  Americans do tend to just hit up conversation…that makes me anxious.

Being diagnosed with cancer has made me a more paranoid person when it comes to my health – and I did pretty much everything possible to limit my cancer risk. A more anxious one too. Upon seeing something that I would see as triggering, there was no stopping my anxiety, and sometimes it would just spike up randomly.

Uncertainty of Cancer

“Nosebleeds. Often, some platelets will solve this, but oftentimes close to my nadir my nose will bleed and sometimes uncontrollably. Last week was among the worst nosebleeds I’ve ever had and had to be admitted, inpatient.  I got home around 2am. It’s these trips that can cause me the most anxiety and stress because it’s not a scheduled thing. The uncertainty of what’s going to happen makes me anxious. So can you imagine what the uncertainty of cancer does to me?

It sucks going in for chemo two weeks out of four. Plenty frustrating since this has been my schedule for the better part of this year. And yet it’s kinda unpredictable since you can’t guarantee certainties on the schedule.”

Mom’s Heart Breaks 

“We were packed for the beach with the kids and my mom in the car, ready to go.  I thought his lump on his leg could have been a torn ligament or something that might need a brace.  My husband passed out when he heard the news. My heart hurt so much for my child. I have not been to the beach since, and I don’t think I ever want to go again.

The thing that makes me the proudest of Nicholas is his amazing resilience of spirit.  He doesn’t stop fighting and he keeps on going, even when it’s so hard for him. He also maintains compassion and caring for others while going through something so hard.  He is there for his friends when they are going through hard times. It’s so amazing that he still has empathy for others.” – Jennifer, Nicholas’ Mom

Searching for the Light at the End of the Tunnel

Nicholoas has turned his love of train travel into a way to cope with his cancer.  A way to map out visually the next step forward. A way to show him how far he has come and a way to keep him focused on searching for the light at the end of the tunnel.
“My road map is more of a train map.  I used to be into trains a lot. Living in England – where there is much better rail travel than in America – I took trains for the hell of it sometimes. Spotting and riding the different types have been definitely fun to me even today. I studied the rail map of London to the point I can still tell you where to go without looking at it. So we created a small poster modeled off the London Underground District Line – the line I would use to get home in London – and put markers for how far along I was.

England has always felt more my spiritual home. Something about it screams out to me as particularly homey and I always felt more at home in the UK than I do in the US. Despite being American I have visited the UK consistently and it’s almost become therapeutic – having a chance to go back to my home away from home.”

Day-To-Day Life Changed 

“Walking even a slight amount of distance makes me tired… and it’s painful. As someone who doesn’t have a car and took public transport to get to school, even before this relapse – it was hard. And just when I thought physically I was starting to recover, I got rediagnosed. And here I am again.”

Nicholas had a knee replacement in 2016. In just a few weeks, he will be undergoing surgery for a hip replacement to replace his pelvic bone where the disease is located.  Both replacements are with metal. Nicholas will have to learn how to walk all over again.

Now What? 

“This might not even be the end. Realistically, it could feasibly happen again and this could be a recurring thing throughout my life. That’s the toughest thought, knowing “yes, I can get through this one, now what?” You never stop dealing with cancer but it’s different from actually having it in you.

I’ve always wanted to travel across the world. There are so many places I want to visit. I hope to visit Asia post-surgery. I hope to sort of live the most “normal” life I can after this. I hope I can finish the early college program at CPCC and that by that time, I could have enough credits to nearly earn my college degree.”

17 years old. Terrified. Exhausted. On his second time around the cancer block, Nicholas speaks out on what it’s like being a teenager fighting cancer struggling with Asperger Syndrome. This stage 4 osteosarcoma warrior had the courage to step out of his comfort zone to publicly talk about his anxiety. We hope you will take time to read his perspective. It’s real. It’s raw… just like childhood cancer. Are you aware now?

DONATE NOW

All photos/videos courtesy of Nicholas’ Mom, Jennifer Haag.

*** 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

Through My Eyes: Behind the Scenes With Aaron Plummer, Dad to Rhabdomyosarcoma Warrior

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 Dad
  • Name:  Aaron Plummer
  • Spouse:  Kayla Plummer
  • Daughter:  Merritt Plummer
  • Cancer: Stage 1 Rhabdomyosarcoma, group 3
  • Diagnosed:  03.04.19
  • Treated at:  Levine Children’s Hospital
  • Feels:  Thankful

Aaron was featured on our social channels (Instagram & Facebook)  on 9/5/19 to share what it’s like to be a daddy, husband, and provider while helping his daughter fight for no more cancer. It’s real and it’s raw… just like childhood cancer.

My Daughter Has Cancer

“In February the babysitter went to change Merritt’s diaper and discovered what looked like small grapes coming out of Merritt’s vagina.  After a visit to Merritt’s pediatrician she determined that it had prolapsed and sent us to a urologist at their other office to determine why.  That urologist did a quick ultrasound and discovered a tumor in Merritt’s abdomen. After seeing the pediatric urologist at Atrium Main, we were immediately admitted to Levine Children’s Hospital where Merritt had a biopsy surgery, CT scan, and bone scan the following day.”

03.04.19 At 17 months old Merritt was diagnosed with Stage 1 Rhabdomyosarcoma Group 3.  Merritt has been through several tumor removal surgeries, 10 radiation treatments, and is in week 22 of 42 weeks of chemo.

The New Normal…

“It’s so frustrating that Merritt has to see this as her “normal” life because it is far from normal for any child at her age.  I have for years heard people refer to children of Merritt’s age being in their “terrible twos”. I disagree with this term because it is not terrible twos, it is a child that is trying to figure out life itself, their emotions, and why things happen the way they do without knowing how to express themselves.  Now take that and throw the “cancer life” on top of that. Try having an almost two year old trying to figure out how to express the fact they don’t like being held down to have their port accessed or how awkward it feels to be put to sleep each day for 10 days in a row for radiation treatment. Having a child that is going through what most of the world sees as “terrible twos” at the same time as cancer treatment is frustrating as a parent. 

And then the new normals as a parent… No parent should have to turn a deaf ear when their child wakes up screaming and crying for 30 minutes wanting milk, but can’t because she isn’t allowed to eat and drink this morning due to scans. No parent should have to be thankful that their child’s white blood cell count is good enough to go to a fundraiser to benefit them.  No parent should have to sit in the waiting area at the hospital just scrolling through their phone, hoping to make the minutes of waiting not seem like hours…..even though they still do. No parent should have to sit in a post-op area just thankful to have their child back in their arms as they wake up from anesthesia, even though they are fussy with a scratchy throat because they had to have a breathing tube during their MRI. No parent should have to be extremely thankful that they don’t have to ride on the CT scan table with their child this time. No parent should have to pray endlessly for the best possible results from scans that determine future surgery and radiation, but they will not get results until Thursday. No parent should have to be so thankful for their child returning back to their “crazy” toddler self just hours after all of this.  

No parent should have to ever do any of this, but this is what has become our new normals.  No parent should have to we know that there are others out there that haven’t had days as good as ours along their journey.”

The Necessary Evils of Childhood Cancer…

“The toll chemo drugs takes on Merritt’s little body is awful.  The worst has been the chemo burn she gets in her diaper area after certain drugs.  Not being potty trained makes it to where we have to change her diaper every 45 minutes for 12-24 hours after chemo to keep it from burning her so bad.  It gets so bad at times that one week we went through 14 tubes of Desitin diaper rash cream and 4 tubes of prescription diaper rash cream.”

On average Merritt has had a fairly smooth treatment process with little sickness. This day during Chemo week 20 brought vomit and many tears over port access. Imagine physically holding your child down screaming & crying “Daddy Move” while nurses are trying to access the port for chemo. Many parents can explain to you about the heart breaking moments involved in getting their child to comply with their cancer team. The memories of pinning them down will never fade.

The Juggling Act

“Family, work, life and cancer… juggling everything is exhausting.  I am lucky enough to be able to have a work place that is willing to work with me and allows me to be with Merritt at every single treatment and any specific day that is affected by her treatment.  But it is hard to go to work on days that are not affected by it because no matter what… Merritt is always in the forefront of my mind no matter what I am doing. 

We are good about going with the flow and taking things as they come but not having control of your life and a lot of what you are able to do is hard.  Your entire life revolves around numbers like hemoglobin and ANC and things like constant sickness for weeks at a time. So just having to see that controlling Merritt’s life and what she can and cannot do would have to be the hardest part.

Chemo days are the days that the average person doesn’t realize that even when the chemo Merritt receives only lasts for 1 hour that day… it still makes it a 6 hour day round trip from the time we leave the house until the time we get home…and some days the chemo itself lasts for 7-8 hours when we get to clinic at 8 am and are leaving around 4.  Non Chemo days I work usually 10 hour days. I luckily work local, 12 minutes from our house, so if I were needed for anything I could be there fairly quickly. I usually get off work around 3:30 or 4:00. When I get home I first spend a little time with Merritt before taking care of things around the house like mowing the yard, changing the oil in a vehicle, or a long list of other things needing to be done.  I then come in and fix dinner. I like to do this because I know even though I have worked all day, taking care of Merritt can be just as much if not more tiring for my wife. We then eat dinner and then usually play outside with Merritt before going to bed.”

Thankful…

“When you turn on the news, open the newspaper, or read through your social media you see a lot of negative in the world today… but there are still A LOT of good people in the world.  The number of people that we don’t even know that recognize what Merritt is going through and they do what they can do or what they are led to do to show their support for her and us. Whether its an encouraging word or letting us know they are praying for us or anonymously paying our bill at a restaurant.  Even just now, 175 miles away from home sitting in a restaurant eating breakfast and the waitress comes up and tells us that someone has taken care of our bill. It is very humbling to know that there are so many good and caring people out there that just want to help in any way that they can. I am so thankful not for the fact that my daughter has cancer but for the fact that we do have Merritt here with us.  We are able to fight with her to beat this because we know there is a reason for everything and we are seeing this make differences in the lives of others.”

Dear Merritt…

Dear Merritt… aka Fuzzy,

I love you more than anything and everything on this Earth.  I will never forget that first time that I laid eyes on you and got to hold you in my arms.  That was the best feeling ever. It was at that point on that Friday afternoon on September 8, 2017 that I knew God had big things in store for you for your time here on this Earth.  Little did I know just how BIG they were. You have always been the most fun loving kid I have ever seen. You have always been able to put a smile on everyone’s face that you come into contact with and if they get to see you dance their smile becomes bigger than your smile.  I did not begin to learn the magnitude of big things you would do until that Monday morning of March 4, 2019 in Dr. O’s office. The last thing that I wanted to hear come out of Dr. O’s mouth was that dreaded “C” word as he informed us that you had cancer. You have become the strongest person I know.  I know it sounds crazy because I am the one that you call for to get the stool so you can watch your fishys and the one that is there to do whatever you want. My strength is miniscule to yours. It has been tough from my eyes to see you going through what you have gone through, but your strength through it all is what has given me my strength to do the things for you.  Being able see you up and playing within hours after everything, whether it be surgery, chemo or radiation, has been what has been the drive to my strength. My strength throughout the journey with you has made me stronger but still no where near as strong as you. You are truly amazing. You have also touched the lives of so many others, from ones that see you every day to many that have never met you. Your smile, your love of life and everything else about you has affected so many people.  Just being able to see your smile and seeing you dance with what you are going through has made a lot of people realize that the things they are going through in life are minor compared to what you are going through and your attitude is so much better than theirs. I have no doubt that this is just the beginning of what God has in store for you. You have a very bright future. I am thankful that God chose me to be your daddy, I am lucky and honored. We will get through this together and this has made us all stronger.   Always remember that no matter what you will always be my solid rock to lean on.

Love always and forever,

Daddy

If you are a dad reading this and your child has cancer, we applaud you. It is so hard to do what you do to stay strong for your family. Thank you to Merritt’s dad for giving us a glimpse into being a daddy, husband, and provider while helping his daughter fight for no more cancer. This is childhood cancer. Are you aware now?

DONATE NOW

Photos courtesy of Aaron Plummer. You can follow Merrit’s journey with rhabdomysarcoma on his Instagram account, @FightingWithMerritt

*** 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

Aaron was featured on our social channels (Instagram & Facebook)  on 9/5/19 to share what it’s like to be a daddy, husband, and provider while helping his daughter fight for no more cancer. It’s real and it’s raw… just like childhood cancer.

Through My Eyes: A Day in the Life of Kellie Andrew, Warrior Mom Fighting to Save Her Child from Neuroblastoma

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:  Kellie Andrew
  • Spouse:  Jason Andrew
  • Daughter:  Brinn, 2 years-old
  • Cancer: Stage 3 Neuroblastoma
  • Diagnosed:  12.11.18
  • Treated at:  Levine Children’s Hospital
  • Interests: being outside and together, Carolina Panthers
  • Feels:  Isolating (Kellie)  Hopeful (Jason)

Kellie took over our Instagram feed and stories on 9/5/19 to share Brinn’s cancer story and give you a ‘day in the life’ view of their day. It’s real and it’s raw… this is childhood cancer.

Jason, Kellie, Nash & Brinn Andrew

When you become a parent you assume new roles. You know who does this and who is better at that and you begin a new way to go about your day with working, picking up kids, dinner, bath, and bed. You get in a groove. Sometimes the groove gets hectic but you figure out what works. Then your kid gets diagnosed with cancer. And everything stops in your mind. But nothing else changes. Every bill, every appointment, every birthday gift, every piece of laundry, it still needs attention. 

Having to take a step back from teaching 3rd grade was hard, but necessary. 2-3 appointments a week, multiple stays in the hospital, and then knowing your child can’t be in a preschool setting due to germs would cause most people to want to become full-time stay at home parents. We are lucky in that I am able to stay home with her. Many parents don’t have that luxury and that’s an entirely different story. My days consist of getting her to appointments with all the meds and tube feeds in tow, back home for her to hopefully nap, lunch, clean up the house (because you know it’s never clean with two little ones) and then to pick up brother at school. Then playtime, dinner, baths, and bed. This is not unlike my life prior to Brinn getting diagnosed, I just somehow seem to have even less time that I did before to do what is needed. 

Jason and I put our children and family as a unit first. We understand that there will be time for us at some point, somewhere. The fact that both of us are on the same page when it comes to this is huge. During such a stressful time we have found that we actually trust and rely on each other more than less. We argue less, we talk more, we spend quality time with each other and our kids more. Someone told me once that as a couple we will either make it through, closer than ever, or it will destroy what we have. We are committed to doing all we can for our family to come out better than we started out.

Haunting Moments We Can Never Unsee

The hardest moment I personally have ever witnessed with Brinn is when we were in PICU after her second surgery in April 2019 to remove organs that were showing signs of necrosis. She was so, so sick. She came out of surgery intubated and began to wake up. Nurses gave her sedation meds 3 times before finally saying she needed to be extubated. Her will to have that tube out so so real! Seeing her gasp and gag, eyes full of true fear and reaching for me will haunt me for the rest of my life. For me it was pure heartbreak because I knew she was actually scared. We were in the hospital 25 days and her health was up and down the whole time. This is a time in her life that is a blur and I don’t mind it one bit.

Just Another Romantic Night at Home…

Nighttime routine is crazy for lots of families…ours is too! This is us getting Brinn ready for bed. She has nightly tube feeds so we must mix her organic blenderized food with something that looks like pediasure and pour into a bag. Delicious. 🤣 Attach the line, prime the line, attach to her gtube extension. These run over whatever hour period we decide. She also needs IV fluids since she isn’t drinking enough each day. Hang the bag of fluids, prime the pump, glove up, clean a line of her Hickman, attach the fluids. This video shows Jason getting the lines primed and food hung, I got her 8 medications ready for her gtube before we started her feeds, he spaced them out because 8 meds is a lot on anyone’s belly, and then I prepared her Hickman for IV fluids.

We realized it makes more sense to do all of this in the den with our kids so 1) we are near them to continue to spend time (they are on their ipads🙄) and 2) allows us to do it together so it’s a faster process. Not ideal but certainly needed. Add in dinner and bath and playtime and the evening is gone.

It’s All About Balance…

Isolating. This is the first word that came to mind when I thought of what word describes our life. It’s not that we are being pushed aside or not heard or cared about, it’s how I feel inside. No matter who I talk with, cry to, explain our day..no one can truly understand what it’s like. I speak with other parents who are going through this exact cancer with their children and while we share so many of the same thoughts and experiences, it’s STILL feels like something all our own. They say no one gets it until you go through it (that’s with anything in life) but even when someone ‘gets it,’ it’s not the exact same as what we’re dealing with. It can’t be because every child is different: different diagnosis, different family dynamic, different in how they handle treatment, etc. I just feel very lonely all the time. I’m staying home full time to care for her and she’s immune compromised so we don’t leave the house. Family and friends reach out often, strangers send cards. It’s comforting to have these people check in on us and it’s helped us as a family the entire way. But truly, I feel like I live in this little nightmarish bubble, put on a happy face, and try to convince myself and the world that things aren’t as hard as they are. If someone were to ask me, ‘How can I help you feel less alone?’ I would have no answer. I don’t know. I just don’t. 

He feels Hopeful.  Hopeful Brinn remembers none of what she has had to endure.  Hopeful she finds strength in the hell she has been through. Hopeful for grit and determination to get through the rest of her treatment plan.  Hopeful one day this will all come to an end. Hopeful to see Brinny rip that bell off the wall when she rings it. Hopeful there are no lingering issues from treatment.  Hopeful the ‘C’ word doesn’t consume my thoughts as we move forward. Hopeful for clear scans the rest of her life. Hopeful that her story will bring awareness. Hopeful pediatric cancer research will be funded.  Hopeful for a cure. During the darkest days of my life, I remain Hopeful.

I Want People to Know…

Cancer can happen and does happen to anyone. I can’t tell you how many times I’ve watched other families go through similar experiences and thought ‘I can’t imagine.’ And now we are in the thick of it and it’s not about imagining it, it’s about doing it. I want people to know we feel alone, left out, scared of the day and scared of the future. I want people to know that we go back and forth between ‘We are doing the best we can,’ to ‘Please make this go away so we can be ‘normal’ again.’ I want people to know that childhood cancer is something that never ends…the possible effects of these toxic drugs on my daughter’s body will linger and pop up when we finally think it’s over. I want people to know that for the rest of her life, and Nash’s life, when they complain of something hurting my mind will immediately go to thinking there is something majorly wrong. It never ends for us But the phone calls do. And the meals. And the visits. And even the prayers as people move on with their lives. Life goes on but for us it goes very slowly and with lots of worry.

Cancer Happens to the Siblings Too…

Nash and Brinn not being able to be together at times is extremely painful. It’s hard enough for me to be away from Nash during hospital stays (and Jason from Brinn), but seeing them ask for the other is heartbreaking. We’ve seen it happen over and over again, the minute Brinn is reunited with her brother she becomes more willing to eat, drink, and play. He gives her the boost she so desperately needs. It’s precious. 

As much as Brinn is going through, Nash is also going through a lot of changes. Different people picking him up from school, one parent at a time at home, not being able to have her play outside or do some of the things they’ve always done together to name a few. He has witnessed big changes in his little life. We’ve seen him so incredibly sad at times and him not knowing how to deal with it (or us for that matter) has been very hard as parents to witness. Nash and Brinn haven’t been able to have the time together that many siblings have and it’s taken a toll on them both. Their bond is so real and their love for each other is so pure. We are definitely proud of our children and the ways they are handling these tough days.

The Unknown…

I’ve joked several times that I’m going to go back and get my nursing degree after all this. I have learned so much while caring for her and honestly feel I’d make one hell of a nurse. But really, even having the best care (from the real nurses and doctors, not me), only means she is well for that moment or that day/stay. The thought of her relapsing is something that is so real and so possible but something I don’t allow myself to think or talk about. Until now. The thought of going through all of this and then it coming back is gut wrenching. I just don’t want to imagine it. I focus on each day at a time and find the happy and normal parts of our lives. 

We are stronger because of all of this. Our marriage, our relationship with our children, our trust in Jesus. I pray that whatever cards come our way we are able to stand firm and together and do what is best for our family. I am so proud of us as we have navigated this past year. 

We can’t thank Kellie and Jason enough for agreeing to share Brinn’s story, for talking about their deepest thoughts as a family and opening up their hearts wide to our supporters today. Parents of children with cancer always appear to be coping, its because they have no choice. What you saw today was unimaginably real. Incredibly raw. This is childhood cancer. Are you aware now?

DONATE NOW

All photos/videos courtesy of Kellie Andrew. You can follow Brinn’s journey with neuroblastoma on her Instagram account, @BraveBrinn

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

9/2We Have Stopped Making You Aware

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

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

Through My Eyes: This is Childhood Cancer

Cancer is killing our future doctors, teachers, mothers an fathers.  Over 15,000 kids will be diagnosed with cancer this year. 46 kids will be diagnosed by the end of today and 4 of those will die.  1 in 285 of you reading this right now will have a child diagnosed. 5 of those children will die.

In the 1960s and ’70s, physicians had few options for children diagnosed with cancer. Yes, some survived, but many of these kids lost their fight because 50 years ago, they simply didn’t know enough about how to treat cancer in kids.

And if it’s not the cancer killing them, it’s the medicine.  The treatments. No child should be dying and suffering from medicines that should be saving their life. Of the ones who do survive, two-thirds suffer from long-lasting chronic conditions as a result of the treatment that saved them.

In the last 50 years, the overall survival rate for children’s cancer has increased from 10% to more than 80%.  For rare cancers, the survival rate is much much lower. How did survival rates increase in just five decades? Research.

For Childhood Cancer Awareness Month… we will be bringing you perspective.  

By taking in another person’s point of view, we broaden our own.  We hope to open your eyes through unique perspectives to give you a glimpse into fiercely intimate moments of those affected by pediatric cancer.  Instagram takeovers, behind the scenes videos, intimate conversations and thoughts. Discomfort, heartache and silver linings. Fear, tiredness, relief and love.  What will it take to turn your awareness into action?

Follow the Isabella Santos Foundation as we pull back the curtain through the month of September as we view childhood cancer through the eyes of those who live it day to day. We will bring you perspectives of:

  • Cancer Moms & Dads fighting for their child’s life
  • A young adult & teen fighting the unknown that cancer brings 
  • Pediatric oncologist & staff invested in bringing change to childhood cancer
  • A cancer family who is fighting a terminal childhood cancer diagnosis

Levine Children’s Hospital has become an important player in bringing better outcomes for kids fighting rare pediatric cancer.  But there is still that nagging problem… funding. Without funding, application of science to the development of new treatments won’t happen. We won’t create change these kids so desperately need. 

That’s why we need your support.  

Read every perspective. Imagine it was your child. Feel their pain. Talk about it. Ask Questions. Share it. Turn your awareness into action.  

Help us fight for our future and be part of the solution – from diagnosis to treatment to survivorship.  Make an impact on these kids stories and help change their outcome.

We Have Stopped Making You Aware, follow our month-long series Through My Eyes: This is Childhood Cancer. We are going to make you aware. We will be sharing stories and perspectives through their eyes.  You won’t be able to look away – because you shouldn’t.  

Ways to take action:

  • DONATE
  • FUNDRAISE as an Awareness Ambassador
  • REGISTER for the ISF 5K/10K For Kids Cancer event on 9/28
  • SHARE. SHARE. SHARE.