Childhood cancer takes a heavy toll on every person it touches. Patients, parents, siblings, doctors, nurses and social workers all have unique and powerful perspectives to share. The Tom Coughlin Jay Fund is kicking off a year-long Letters to Cancer campaign to reach beyond the facts and figures and share the honest and emotional voices of those mostly deeply impacted when a child confronts this life-threatening disease.
We want people to speak from the heart and address “Cancer” directly in the form of a letter, describing the impact it has had on their life. These letters may be raw and difficult to read at times (warning--some include censored curse words), but they paint a heartfelt and accurate depiction of the pediatric cancer journey through different viewpoints.
We begin this campaign by sharing Lauren’s letter (see the video at the right and the letter below). Lauren’s son, Joey, was 7 when he was diagnosed with leukemia and began his painful and aggressive treatment.
We plan to share these letters throughout the year on our website, social media platforms and email and we welcome your contributions to this campaign. If you would like to share your letter, please forward your submissions (350 words max) to Carolyn Tillo at [email protected].
Watch Lauren's video here:
Dawaun’s Letter
Cancer,
We don’t like you. You kill. You turn lives completely upside down. Age means nothing to you. Race, gender, economic status. It simply doesn’t matter to you. Your name alone triggers resentment. It sends chills.
We knew about you and how devastating you could be. We had no clue that it would get personal. Our grandmothers, grandfathers, aunts, cousins, parents. Then, there’s Liam. Our Liam. That’s when it got real. That’s when it turned into hate. We still cry when we think about it. When we see the pictures.
We were supposed to take our son to Disney World on December 1, 2014. Instead, we learned that you had picked a fight with Liam, so we prepared for battle. By the Grace of God, Liam won his battle, but some didn’t. So many haven’t. So many won’t. You’ve got to understand the reason for the hate.
And yet, as much as you stir up fear, you also inspire bravery. For all the hate we have for you, the amount of love that is spread is immeasurable. For every ounce of hurt you inflict, there is healing.
The world would be a better place without you, Cancer. I mean that from the heart. With every muscle in my body I say this. For every life taken. For every life turned on its head. For every dream you have shaken. For every sleepless night. For every painful night. For every trip to the ER. For every hospital stay. For every year or day of school or work that is missed. For every funeral, memorial service, moment of silence.
If we never see you again, it’s too soon. Just go away and never come back. Trust, you will not be missed.
–Dawaun, Liam’s dad
Brooke and Frank’s Letter
Dear Cancer,
You entered uninvited. Stealing the joy of a young, growing family. Interrupting the wonder of chasing butterflies, building block towers, blowing bubbles in your siblings’ faces. Interrupting the ability to run from the slide to the swings and to jump with silliness into your parents’ arms. You entered as leg pain that experts could not identify for months, but that a mother knew was abnormal. Staying with a stoic young girl until she was in crisis.
An unwanted family member…a family member because you were there for every moment, every meal, every conversation and every decision. You were joined by many other guests…unwanted and unwavering: anxiety and stress; a language and new terminology that we did not want to learn or understand; lab results and numbers that we had to analyze; ports and tubes and powerful yet toxic medication; signatures that grant the chance of a cure; long days of appointments and hospital stays; sleepless nights at home lying on the floor next to her bed, or pacing in the hospital room to the sound of beeping monitors and the rhythm of her breath. You brought the death of friends. You brought long-term side effects, from financial instability to PTSD and a lifetime of worry ahead.
As you left and the medical appointments slowed, the guests that you brought with you continued to linger. However, along with the lingering of gray clouds, you also brought sunshine. You, childhood cancer, also brought new family members. People who had not experienced your wrath but are able to see us…to see into this world. They extended a hug or a smile, a kind word or glance, that in the moment allowed us to catch a breath. People who shared simple gifts of coloring books and baby dolls, who allowed our daughter to escape for a moment. You even showed us that bubbles can be blown while lying on a stretcher, even if you cannot chase after them. These brighter guests brought joy in the simple moments and found ways to bring all families battling this demon together, to share in the struggle and in the triumph. So, although the gray clouds will be with us for a lifetime, we do see the sunshine, and we appreciate it much, much more.
–Brooke and Frank, parents of Elizabeth
Marianna’s Letter
Dear Cancer,
On Thursday, February 24, 2022, at 3:30 pm, I took my son for an x-ray after four months of continuous treatment for asthma and allergies… or so I thought. But YOU knew.
I wanted the x-ray. A friend’s 27-year-old son-in-law recently passed away after doctors failed to diagnosis you lurking within his body. A simple x-ray would have discovered your destruction.
My son sat in the waiting room and asked me, “Mom, what if I have cancer like him?” I tried to reassure him and said, “You’re not going to have cancer. We’re just looking.”
On February 25 at 9:30 am, you, cancer, became part of my life. The doctor called and told me, “Your son has lymphoma. Get an appointment with an oncologist right away.”
My 12-year-old son was diagnosed with non-Hodgkin’s lymphoma. Twenty-four hours later, I had to go home and tell my son that you, cancer, had invaded his body.
We got in the car and both cried all the way to Cohen’s Hospital emergency room. I told him that God gives us what we can handle and we would do everything possible to get through this. I told him we had a strong family and a lot of friends and that everything was going to be ok. We were not alone.
We spent 12 days at the hospital going through scans, biopsies, port implementation surgery and the first round of chemotherapy. We were fortunate to have the most amazing doctors and angels for nurses. My son handled six rounds of chemotherapy through June 2022, with every hospital admission falling on every holiday during those months.
We had help from loving family, amazing friends and the most giving strangers. People we never met provided us with support that will never be forgotten and could not be paid back.
YOU, cancer, have changed us. We are different. We look at things differently now. As a family and as individuals we have changed. We don’t take anything for granted anymore.
My son understands that his life will be different forever. You, cancer, will not define him but you have changed him. You will always be his story.
I wake up everyday and embrace how fortunate we are to have made it this far. And every night I shed a tear for my son and how he must feel inside. Everyday I wear a gold heart pin with a gold ribbon to remind me that we are warriors and that you, Cancer, are our story.
–Marianna, Marco’s mom
Patricia’s Letter
Dear Cancer,
I am ready to leave you behind. You have robbed my family of too many happy adventures and replaced them with pain, fear, anxiety and financial devastation. There are not enough words to describe the physical, emotional, mental and spiritual toll you took on my family. You are a thief.
I remember how my sweet baby girl started crawling at six months, walking at nine months and her sweet smile and jubilant laugh. She would dance like a ballerina in the living room one minute and chase lizards in the park the next. Her age was measured in months, not years, when you tried to rob my beautiful princess of her joy.
After nearly three years of your ugliness, I am ready for adventures without six chemo doses a week, adventures without late night emergency trips to the hospital, adventures without transfusions, adventures without fearful tears and confusing rashes and adventures without hair loss. Your destruction seems to know no bounds.
But new adventures await; you have been defeated. I am thankful the Lord has protected my baby girl and brought so many people to aid and assist my family and help us carry the financial burden. It is time for you to go.
I am ready to leave you behind.
–Patricia, Lillian’s mom
Alex’s Letter
Dear Cancer,
I want to start by saying [expletive]. Harsh words but not harsh enough for the destruction you spread across so many families. You have ruined the lives of so many people. You took away my dear aunt who was like a mother to me. She protected me when I was a child. When she passed away, you stole a mother from her son and daughters. You crushed them and so many other family members.
But the worst possible agony you have put me through is watching my beautiful daughter Camila spend every day of the last eight and a half years standing up to your hurt and heartache. My daughter is special and I adore her. Mi amor, mija. She is filled with love and light and spirit. If I could only ask for one thing, it would be for Camila to be free from cancer, free from you. She deserves so much more than the pain you have caused.
I struggle everyday with worry and fear. But Camila is my heart and soul. She brings me joy and reminds me every day of her love for me, her mom and her brother, Carlos. So, no cancer, we won’t give up. We will continue to pray for the day that Camila will finally be free from you. We pray for the day when we will watch her achieve all her dreams.
–Alex, Camila’s dad
Stephanie’s Letter
About this piece:
Stephanie wrote this on May 24, 2021. Her daughter Ava was at the height of her intensive chemo treatments. She was in the procedure room getting a lumbar puncture. Stephanie had to wait outside the room on a green bench in the hall. It was a very hard time for her. It still is.
The lonely green bench
No one knows the horrible feelings and thoughts you have inside.
You sit with anxiety and wait…
You listen to the chatter of the girls behind the desk, the restaurants, who’s buying a house, Uber fares, marriages, parties….
So many walk by the lonely green bench in the hall.
They don’t even see you there.
No acknowledgement, not even eye contact.
You wait and watch the clock, the door, the clock, the door… you wait.
You think of horrible things and cry. You remember the good times and cry.
You are all alone on the green bench.
You watch people pass, but they don’t see you, they don’t look…
You pace and just want air, cold air to blow in your face. You feel suffocated.
The green bench is lonely.
You wish you had someone there to see you cry and hear your sorrow. But you can’t. Thanks, COVID.
You are all alone on the green bench in the hallway.
The procedure is still happening…what’s taking so long??
They all walk by but don’t look because it’s too hard. Too hard to see the pain, the sorrow.
The misery is palpable. You can sense it in the air.
No one wants to see it because it’s easier to just walk by and be busy.
It’s not their child, their son, their daughter, their baby…it’s not theirs.
You wonder when the tears will stop? Will they ever stop? Do you ever get used to seeing your baby, your heart, get put to sleep, injected…probably not.
You sit and think about all the poison, the medications, the toll on her body, her mind.
You sit on the lonely green bench in the hall and see other parents walk by with their cancer kids, some in chairs, in leg braces, with strollers…
You recognize the pain in their face, they see you, you see them, and you nod, or smile, or blink, to let them know you see them. You feel them. Their pain. Their sorrow.
The babies in their arms, bald, pale, sick.
Their eyes are lonely… like the bench.
The lonely green bench in the hall 😞
–Stephanie, mom of Ava
Connie’s Letter
When I was encouraged to write a letter to cancer, I said, “There will be no “Dear Cancer.” There’s nothing “dear” about cancer. Cancer is that uninvited guest that arrives at your door, unannounced and unwelcome. No place was ever set at our table, welcoming cancer to come in and join our family.
And yet, it arrived anyway.
So, what shall we do when someone, no, some thing, shows up in our lives, walks into our peaceful home, invades it, and makes its presence known in such a way that EVERYONE in our home must adjust, because everything has suddenly changed?
Here is what I learned from my daughter, who was diagnosed with osteosarcoma at age 15, as I watched her gracefully walk through the most difficult experience of her life.
Do not resist. The cancer is already here.
Hold and embrace your experience. Yes, this is the call: to embrace your experience. Not the cancer, but the experience of this suffering. Embrace the person, the living heart and soul and mind and body of that beautiful person whose body is housing the cancer right now. She needs your embrace. You need her embrace.
Engage this beautiful soul with loving kindness.
Be present with her, deeply present.
Listen to her.
Learn from her. This experience she is having is changing her, helping her to grow, begging her to love herself more deeply and tenderly.
Be there, and support her in this growth.
Mid-wife her soul…as it is striving to emerge.
Watch and see. This experience is meant for you, too.
As you do this, she will bless you.
And you will be blessing her in return.
Don’t miss this opportunity.
And then, as you walk with each other through this journey, your loving kindness – that energy that you both have created – will be your ‘farewell’ to this cancer.
You will have sent it on its way….
Remember, we are always in charge of our own experience.
Remember, and help the world to be reminded of this truth.
Indeed, this is the truth that shall set us all free.
–Connie, mom of Gillian
Marissa’s Letter
If you went back ten years ago, can you remember what you were dreaming of? Was it graduating college? Getting married? Buying a home? Starting a family? Going on vacation? What were you thinking about?
I can tell you what I was thinking about. Strength, bravery, sadness, pain, joy and much more. I was a month shy of finishing chemotherapy treatment, finally being able to step off the rollercoaster I had been on since May 2012. I was seventeen the day I was told the unthinkable, “you have cancer.” Those three words rocked my world and broke me into a million pieces. But if I was being honest, two years later, when I was told that I could not have children because of cancer, those broken pieces turned into a billion.
Building a family was my ultimate dream, and that dream was crushed. In the last ten years, one thing I have continued to do though is prove every person wrong who has told me “no” or “you can’t do something.”
Now, ten years later, I am cancer free, married, building the future I had always dreamed of and celebrating my first Mother’s Day with our 10 month old baby boy. My journey to motherhood was no walk in the park, but it has become one of the greatest chapters in my life story next to beating cancer.
Being a mother is the greatest, most difficult thing I have ever done. Yes, it’s as difficult as battling cancer, and similar in ways. Motherhood shows your strengths, while also revealing your weaknesses. It has many ups and downs, but the smile on my son’s face makes everything worth it.
Cancer taught me that when things get tough and you feel like giving up, you have to fight harder. I did that by accepting my journey, securing our donor, retrieving her eggs, creating our embryos and implanting our miracle baby on October 15, 2022. My motherhood journey is unique and not the norm, but that is how my life has been since being diagnosed with cancer. And I wouldn’t have it any other way.
–Marissa
Ingrid’s Letter
Dear Cancer,
You were never welcomed. Since you have entered our lives, we have been turned upside down and ripped apart. It was our first born’s senior year. You stripped her of what was supposed to be one of the most memorable years of her life! She is gorgeous with or without hair, but she didn’t see it. No matter how many doctors, nurses and family members told her, she still didn’t see her beauty. Senior year …. no eyebrows, no hair, fragile and completely broken. She fought and, thank God, is still here but she is struggling within herself to get over what she went through.
Dr. Rao broke the bad news to us in December 2020 and our lives haven’t been the same since. Her dad gives her anything she wants because of the guilt he carries of not being able to do anything for her during the worst time of her life. He doesn’t get that there was nothing else that he could do for her.
I was there EVERY SECOND OF EVERYDAY! It was a struggle, but I put my hard hat on and worked my a** off to get her through it. I’m still struggling to try and get her back to how she was. I won’t give up, even though it’s breaking me apart inside. I will never give up, even if it’s the last thing I do. It’s now been more than two years and you’re still haunting my baby. We were told you were gone, but you’re still lingering in her mind. I HATE YOU for making her HATE herself. She’s a warrior, a survivor, she’s amazing but doesn’t see it.
–Ingrid, Ariel’s mom
Kellie’s Letter
Dear Cancer,
I never really thought of you as more than just a word. You’re the word you hear in whispers behind closed doors growing up. You’re the word you hear when a friend or family member is sick. And you’re even the word you hear when someone may have passed. Many think of you and relate you to “bald heads”, chemo, fundraising, sick days….l’ve learned that you are so much more.
I’ve felt and seen the pain you cause. I’ve learned you can be quiet and I’ve learned you can be loud. I’ve held someone in my arms as tears run down her face – not understanding what she did to deserve your pain. I’ve held someone’s hand as she took her last breath not because you won, but because you came into her life in the first place.
My first major encounter with you was when you entered my mom and our lives in the form of leukemia. You were quiet at first, but in September of 2022- you came back to my mom louder and in a different form – lymphoma. Why cancer, why her again? This was her time when she was just enjoying being Crazy Grandma at the softball fields or eating Mexican with her friends– who truly became family. Was the first time not enough? This was when I had a “why me?” moment…you know what I’m talking about. The thought process goes something like this: “What did we do…we are always giving and caring…why is this happening to us, again?!” But we decided to fight, and the battle began. I again started to understand and slowly see your effects. You were not just a word- you were our new life.
My second major encounter with you came just 30 days after we found out my mom had lymphoma—this time you had come to our daughter. We fought and will continue to fight, and guess what? We are winning! You have turned our world upside down and brought many tears—for that I hate you. But because of you we are stronger.
Cancer, I know you will continue to fight, but just know you will not be victorious. Just know, cancer, we are stronger this time. I will not thank you cancer for what I have learned or for the strength you have given me and my family. But because of this journey, I will no longer think of you as just a word. Cancer, this is our win not yours, so it’s time for you to say goodbye.
–Kellie, Samantha’s Mom
Christina’s Letter
Dear Cancer,
How dare you come into my family’s life and try to destroy us. You tried to rob my son of his youth. It was like the wind was knocked out of me and I couldn’t understand why you decided to invade my son’s body and try to knock him down. He did nothing to deserve this. We were good people, he was such a good little boy. Why? Why him? Why us? Why our family? Why? Were we being punished?
You stripped my son of who he was. The little boy who was happy all the time and who was so athletic and who loved swimming and bike riding and running around with his friends changed before my eyes. He became skinny, and fragile and sad. He was scared and tired all the time. He would say to me, “Mommy, why do I have to go through this, why do I have to have mouth sores, and fevers and take medicine, and why did I have to lose my hair, and why can’t I see my friends and my cousins, and why can’t I go to school? Why mommy, why me?” I had no answers. I didn’t know what to say to him. We would hold each other and just cry. I would tell him it was going to be alright and that he had every right to be mad at you.
You tried to bring him down, but you failed. You failed miserably and Michael made it through the storm that you cast down on my family. He persevered and came back stronger and smarter and wiser and happier than ever! You tried, but you failed. May you never, ever, ever, ever, come back. F**k You Cancer, F**k You.
–Christina, Michael’s mom
A Social Worker’s Letter
Dear Cancer,
F*** you!
You take a person’s body and (sometimes way too quickly, and sometimes way too slowly) destroy the person’s ability to walk, to move…to breathe. You interfere with a child’s education and fun times; and you tear families apart as they struggle to meet the patient’s medical needs while still maintaining an income so they can keep a roof over their head. You break hearts every time you show up for the first time – every time you relapse – every time you progress – every time a child succumbs to your dastardly grip. Personally, you have also wiggled your way into my home. We are a “healthy” family, yet every time one of my children has a growing pain, or spots in their vision, or a need for an annual pediatrician’s checkup, in my mind, they have cancer until the doctor could prove it otherwise. Damn you for taking my innocence.
And, yet, thank you for the lessons I’ve learned.
I’ve been working in pediatric oncology for over fifteen years – more than half my career. And I wouldn’t have had it any other way. From these children and their families – from my colleagues – from foundations/organizations – from myself – I have learned so much about grit, determination, hope, love, patience, commitment, and generosity. I have learned that there can be joy even amidst the darkest of times. There can be hope even in the face of life-threatening illness, and even, impending death. Hope is a beautiful thing which can guide a family from struggle to peaceful acceptance. In that state of acceptance there is a way of being which brings togetherness, understanding, growth and a deeper love. My life is so much better despite you; because of you.
I do worry that one day, someone near and dear to me (maybe even myself) will be diagnosed. I know that I will be heartbroken too. I also know that I will see the bigger picture, helping to keep a more positive perspective no matter what the outcome. Cancer will not define me.
Sending peace and acceptance to all those impacted by cancer,
A New York City Social Worker
Gloria’s Poem
When your child is diagnosed with cancer…
Disbelief, anger, and helplessness fill your heart,
A gut-wrenching knot in your stomach tears you apart.
Downpours of tears fall from your eyes,
A huge pain and fear is always inside.
Life just never feels the same,
Seeing your child suffer is the most devastating pain.
Wishing to take your child’s place every day,
Desperately yearning to take all the pain away.
Thankful for excellent medical care day and night,
Always encouraging us to fight.
Every small victory is a huge accomplishment,
A sign from God, a tiny step forward, an encouragement.
Moments spent together,
Are more meaningful than ever!
Caring, hugging, holding onto love and hope,
Feel like the best ways to cope.
Months, years of hospital stays and treatments seem forever long,
A new, different kind of bond with your child is incredibly strong!
An overflow of support from family, friends and members of the community,
Guides and enlightens you internally.
Fighting pediatric cancer is harsh, unimaginable,
But special people make fun moments possible!
Grateful for receiving endless generosity from a charitable organization,
Called the [Tom Coughlin] Jay Fund Foundation.
Jay Fund gives pediatric cancer patients and their families a chance to smile,
Setting aside some pain and hardship even just for a while.
[The] Jay Fund gives children and families battling this horrific disease,
Continuous kindness and support to help take on this treacherous journey with some relief,
comfort, and peace.
–Gloria, Sofia’s mom
Wendy’s Letter
Dear Cancer,
I have a bone to pick with you!
I’m here to set YOU and the story straight!
You have poorly picked the wrong 4-year-old to invade, because if you had clearly done your research, she was never a match for your ulterior motive. Maybe you were misled by the only thing you had in common, her zodiac sign, Cancer – the Crab. For crying out loud, did you even bother to look up the meaning of her name?! Delaney, the dark challenger. “Born to defeat the dark arts, little Delaney is prepared to combat life’s evil demons from a young age.” The child of dark defiance! If that’s not a FU to cancer, I don’t know what is!
You were fooled by my feisty, sassy, strong-willed little girl who is filled with a fire I hope never burns out. She beats to one drum, and that’s her own!
Little did you know you couldn’t tear down her young spirit with all of your dirty tactics, because she has always persevered.
-You sometimes made chemo sessions longer than a kindergarten day, but she persevered.
-You have zapped her energy and made her belly hurt many times, but she persevered.
-You stole her hair and thought it would make her insecure, but she persevered.
-The countless fun events you forced her to miss, but she still persevered.
So here we are restoring the normalcy you have temporarily stolen from us, because we, as a family, have persevered.
Although you, Cancer, have disrupted our lives, especially our Delaney’s life, we were forced to accept your challenge. Our Delaney, our little dark challenger’s defiance was put to the best use. Your intent backfired on you. You only made us stronger. You only made us realize we are living with a real-life superhero, Delaney!
With no love,
The Proud Mother of a Defiant Child
P.S. Delaney – I’m so proud of you my Boo Boo Bear. You make my heart happy. Love, Mommy
–Wendy, Delaney’s mom
Evan’s Poem
Evan wrote a poem about his son Dkoa’s cancer journey. Dkoa is 20 and was diagnosed in 2020.
We have arrived.
The point everyone dreads.
Exhaustion.
It is the daily things that cause the most damage. I can handle the sleepless nights, beeps and whirls and the sad eyed nurses.
No.
It is the long green grass of an unmowed lawn. The stacks of ever returning dishes. It is your other son’s or daughter’s request to go here or there and be with friends. The dog barking at 5am.
It is life continuing despite cancer.
For me, the anger comes out sideways.
My brother in law recently said “Loki is the best superhero.”
I was suddenly enraged. I got my keys, my cell phone, my hat and promptly stalked home 7 miles in flip flops.
(For all of you wondering what is the correct answer: Wolverine.)
My wife called me in a panic, “What did he say? What happened? Can I come pick you up?”
I said, “He said nothing wrong and no, I need to walk this out.”
The battle for Dkoa’s prosthetic has begun. The hoops we have to jump through are impressive, and it is becoming a battle for attrition from requesting letters from his regular oncologist, his surgeon and the insurance denials. The big goal is getting him in the best prosthetic that will allow him to live as full and engaged a life as possible.
Through it all, Dkoa has maintained an upbeat attitude through constant requests for Chef Boyardee and mac and cheese. He finds great joy in the dogs who seem to have a better handle on the situation than we do. Dkoa is always ready to bend any ear (willing or unwilling) about the anime he is currently watching or game he is playing.
His positive attitude and the fact that we have 3 chemo sessions left in the next 5 weeks has also given us a glimpse of the light at the end of this tunnel.
God’s hand was in our move to Jacksonville, FL with all the specialty hospitals here in northeast Florida. We are thankful to Him and we are thankful for each extra day He gives us with Dkoa.
-Evan, Dkoa’s dad
Lauren’s Letter
Dear Cancer,
It’s been almost 7 years since YOU invaded my family and waged a war on my little boy…. I can remember so distinctly when those words, “Your son has cancer,” were spoken.
YOU have changed the landscape of my life. Everything that was brightly colored, turned black. YOU took away happiness, hope and shattered my faith. When I look back, I can almost see my former self, but I can’t recognize that person, untouched by YOU, untouched by cancer. I was innocent, and not nearly as vigilant or worried, and riddled with anxiety.
As time passed, I somehow gathered strength and helped my family wage a battle. And we fought YOU with every ounce of our being, with all of the strength we could garner. But this battle changes you, and everything is different now. With one single diagnosis YOU managed to kill my career and ruin us financially.
Slowly, we began winning small victories against YOU. But YOU were ever present, YOU never seemed to leave. YOU became a part of me, became a part of the fabric of our family, YOU have become a part of our story. No one tells you just how horrific it really is. The medications, the IV’s, the inpatient stays, the trips to the clinics, and you have no choice, but to just sit there and take it. YOU had all the control.
And then finally three and a half years later, the end. We finally get to ring the bell…We beat YOU! YOU are gone! But the reality, the truth, is even when it’s over, it’s not. YOU are always there, YOU are part of my child, a part of me, a part of us, and a part of our story. And It’s unfair!
I think of YOU more often than I care to admit, YOU still invade my thoughts daily. I think of the what if’s and what could be’s. I never disclose this to even my closest confidants, how often YOU cross my mind. But even 7 years later, we can be having a wonderful time at a party, or I can be watching my son play in a football game and I can still glance over at my beautiful, handsome, strong, healthy child and see that little sick boy flash before my eyes, that is YOU cancer. YOU don’t ever really leave. It’s like YOU reminding me that you are there lurking in the shadows.
The reality is that YOU will be with me forever. And it is difficult to despise something that has become an integral part of who you are. So during the times that YOU so often invade my thoughts, I try to also remember some of the good that YOU brought me too. YOU brought me a love of my community, that stood behind me and carried me through with faith and hope, when mine could not be found. YOU sent friends, some who I had never met before, willing to help and lend a hand, when we needed it the most. YOU showed me the true meaning of grace. And YOU showed me that love and light do really exist in darkness.
Cancer, YOU will forever be a part of me and my story. YOU have made me fight a war that I didn’t sign up for and that in many ways I will continue to battle forever. However, YOU have also shown me the best of the human spirit and make me want to give back. YOU, CANCER have not broken me or my child!
-Lauren, Joey’s mom
Nikki’s Letter
On May 29, 2016, a malignant brain tumor was found in the back of my daughter’s brain and she named him Eddie. This is before we knew the name of her cancer… anaplastic EpenDYmoma… Edy.
Dear Eddie,
Wow, you really worked overtime to make sure you proved your point.
You tested our faith, our fight, our abilities and our patience. Doctors would remove you and you just kept coming back. Your toxic ways stole so much from us. You took Gianna’s balance and ability to walk, her right leg sensation and then her left leg. You took away her right-hand movement, thinking she wouldn’t be able to paint anymore. But she defied you and learned how to paint with her left hand. You took her right facial muscle control, but she came back with a “you know I’m cute” smirk. Gianna always found ways to rebel against you.
2,104. That’s how many days Gianna fought for her life. So many numbers that I can’t believe the math because it doesn’t make sense. Five years, nine months and 3 days divided by two spinal tumor removal surgeries, then multiply by 32 localized radiation treatments, and add 33 proton beam radiation therapies. Oh, then take the sum and add six different shunt replacements, subtract by the hundreds of days she stayed in the hospital. And let’s not forget the seven brain tumor removal surgeries, divided by the longest six months of chemo, then subtract the two times Gianna almost died. Man, I HATE MATH! But let’s keep going. The thousands of dollars in medical debt, the two evictions from our home and that time our lights got cut off when she needed her IV medications to stay refrigerated. And finally, the three times they told us there was nothing more they could do.
But there were blessings and lessons learned because of you. You brought families, friends, nurses, doctors, hospital staff, social workers and childhood cancer foundations to our door. We learned to appreciate the simple things in life. Never forget that the small, special moments with loved ones are the greatest joys in life.
You hit us hard, Eddie. Gianna never got to meet her baby sister. She never walked across the stage for her 8th grade graduation. She never blew out the candles on her cake for her 15th birthday. But we push forward every day. Gianna always gave her best and we will do the same. I made my beautiful baby girl from scratch… all her parts and all her pieces. I was there to hold her with her first breath and I was there to hold her in her last peaceful loving moment. God gave me that, not you.
Sending you off,
Nikki–Mom of Gianna, one of the greatest people ever made!
Shenera’s Letter
It was the Monday morning following our very first Thanksgiving as a family of five, and boy were we thankful. Liam was now a big brother to three month old twins. A brother and a sister. Our cups were running over. A quick trip to the pediatrician to check out that nagging fever Liam had over the holidays then off to his first trip to Disney World. Such exciting times.
Never in our wildest imagination could we fathom that our family would be expanding yet again. A new member that we neither wanted nor prepared for. That new member was you, Cancer.
Unlike the euphoria we experienced with the birth of our children, you, Cancer brought nothing but dread and terror into our lives. You made yourself at home like an undesired squatter. You came during a time that should have been blissful. You arrived on a day that would have been magical. You were accompanied by pain, sorrow, sickness, fear, torture and RAGE. You threw everything you had at our child, but you failed to realize that he/we had a warrior on our side and His name is Jesus.
When you sought anguish through grueling treatments and horrific side effects, Our God gave us uncommon strength and resolve. Cancer you are a coward, a bully and now a defeated foe.
You have been evicted from our family.
I hope you remain homeless for the rest of your days.
–Shenera, Liam’s mom