circle of paper dolls connected at the hands

What 'No One Fights Alone' Means for Me as the Parent of a Child With Cancer


It’s often said in the childhood cancer world, “No one fights alone.” It’s not a solo journey. Lately, I’ve been reminded of that more and more.

Yesterday, I reached out to friends and family to call their senators to ask for support of the Childhood Cancer STAR Act. As I watched my Facebook post be shared and copied multiple times over the past 24 hours and read numerous comments and posts from people who made calls, I was humbled. This is an issue that directly affects my family, my child and our future. But for many who made calls today, this doesn’t have a direct impact on their lives. People called and shared to help me, to help my child, and to help my family. They have joined our journey, and because they are alongside us, they feel affected. When I saw my friends who have healthy families and friends without children who stood with us and made calls today, it brought me to tears. That’s what they mean when they say, “No one fights alone.”

We have recently partnered with Alex’s Lemonade Stand Foundation (ALSF) and have set up a Hero Fund in my daughter Tillery’s honor. When we were in Cincinnati, ALSF helped cover some travel expenses for us before we were set up at the Ronald McDonald House. When we looked into them more, we learned they raise a lot of money for research, and the “Tillery Is Loved” (TIL) Fund is set up with all funds raised being used directly to fund pediatric brain tumor research. It’s come pretty naturally to us to discuss ALSF and our hopes for funding important research.

A few humbling things have happened over the past week. In addition to our usual supporters, we had two donations this week that really touched my heart. The first came last week from my students, who took up a collection to present to me on the last day of class. (Don’t listen to the negative things some people may say about this upcoming generation — these college kids have big hearts!) The second was from our favorite 12-year-old. Natalie is a special girl and a great role model to hang around with our kids. On Sunday, Natalie gave me a handful of bills and asked me to put it towards our Christmas Giving fundraising. We have been doing fundraising efforts for over a year, and we have so many people who have been involved. There are people who give every time we ask for donations. Regardless of when, why, or how much, since our first fundraiser in August 2015, we have raised almost $14,000 for childhood cancer research! That’s what they mean when they say, “No one fights alone.”

Tonight, I went to dinner with two friends. I met these ladies when we were each going through some of our hardest days. We met at Cincinnati Children’s Hospital. We were all miles from home with sick children and unknown futures. Before going in to meet my friends for dinner, I was texting with a friend who is spending the night tonight at Cincinnati Children’s with her child. Earlier today, I spoke with two other mamas I met while living at the Ronald McDonald House. We became a community. Through the hurt that our families were going through, we formed unbreakable bonds of friendship. We hugged each other on hard days. We shared meals, Cherry Cokes and medical supplies. We laughed and cried and told stories no one else we have ever met could relate to. That’s what they mean when they say, “No one fights alone.”

Thank you for fighting alongside us. Our lives were forever changed when our daughter was diagnosed. One change was that we learned we were not alone.

Image via Thinkstock.

Follow this journey on Hope TIL There’s a Cure.

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The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

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13 Truths People Affected by Childhood Cancer Wish Others Knew

13 Truths People Affected by Childhood Cancer Wish Others Knew


September is National Childhood Cancer Awareness Month. There are several types of childhood cancer, and it is the leading cause of death by disease in children under the age of 15 in the U.S. These dire statistics indicate the need for increased awareness and funds, and are a big reason to “go gold” this month.

The Mighty collaborated with FCancer to ask our Facebook communities, “What’s one truth you wish others understood about pediatric cancer?” Their answers reflect the devastation that often comes with diagnosis and the difficulties of dealing with the harsh effects of treatment.

1. “Cancer is killing our future generations. Only 3-4 percent of fundraising goes into research for children’s cancer. My child died, but we can save so many more with a bigger chunk of the research dollar pie.” — Lynn F.

"Cancer is killing our future generations."

2. “When cancer steals your child, it can also steal your marriage. You look at life completely different — those little tiny things we fight and argue about, they don’t matter anymore, because you just watched your child take his last breath.” — Gabrielle L.

You look at life completely different — those little tiny things we fight and argue about, they don’t matter anymore, because you just watched your child take his last breath.

3. “As devastating as it is, you will learn more from it than any other life experience. It will make you tough as hell, and nothing else will ever scare you again. We need more funding for research, and we also need a stronger focus on the quality of life that these kids are experiencing both on and off treatment.” — Amber B.

4. “If your child survives, the fact is that long-term effects and possible secondary cancers are a daily concern.” –Melanie S.

5. “The truth about childhood cancer is that it can find any child! No matter how healthy a child is, no child is immune to childhood cancer. Know the signs — early detection is important.” — Janine W.

"No child is immune to cancer. Know the signs - early detection is important."

6. “It affects the whole family, not just the ill child. Be strong for each other and help siblings understand and enjoy their lives as well. If you’re lucky, you will all survive and be stronger for it. However, the worry and fear never goes away.” — Tim R.

7. “One in 5 children who are diagnosed do not make it. The odds could be greatly improved if more attention and more resources were given to research and fight.” — Heather C.

“One in 5 children who are diagnosed do not make it. The odds could be greatly improved if more attention and more resources were given to research and fight.”

8. “No matter how healthy or strong your child is, it can put a stranglehold on them without notice.” — Rick M.

9. “The worry doesn’t stop the day they finish chemotherapy. You then have to deal with the side effects of having chemo/radiation at such a young age.” — Lisa H.

10. “As a parent, there wasn’t anything you did that caused your child get sick. Cancer is not your fault.” — Blenda F.

11. “More children are being diagnosed with cancer today than ever. We have to be better, do better, advocate more, speak more, raise hell and raise money for these children.” — Tina W.

"We have to be better, do better, advocate more, speak more, raise hell and raise money for these children."

12. “The chemo and radiation can do more damage to them than the cancer itself.” — Candace B.

13. “F*ck cancer.” — Jared S.

 

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

little boy with leukemia in the hospital

Try to Wrap Your Mind Around Childhood Cancer, Even for a Minute


September means many things to many people. Mums replace summer flowers, football is in full swing, we get out our jeans and sweaters, we know autumn is on the way.

For me and many of my friends, September also means “going gold” for Childhood Cancer Awareness Month. My son is an acute lymphoblastic leukemia survivor, and as such, I have many friends whose kids have had childhood cancer, are currently in treatment, or have been taken by the disease. For us, childhood cancer awareness is more than something that happens for 30 days at the end of every summer, it’s something that started on a day a medical professional delivered devastating news, and continues every day of our lives from that moment on.

In September, I think all the time about childhood cancer. My social media is flooded with awareness messages, and I spread the awareness as well. There’s plenty to share, from statistics and memes to information about side effects and late effects of chemotherapy and radiation. But what strikes me most this September is the endless queue of children who make their way through the Hematology/Oncology Clinic.

Yesterday, Ben had a follow up appointment at the clinic. It’s been three and a half years since he finished his leukemia treatment, and almost seven years since he was diagnosed. The clinic we used to visit several times a month and where all the families had familiar faces is now filled up with “new” patients and families, people we don’t know because day in and day out, new people are inducted into the childhood cancer world. The names and faces change, but the diagnoses, the treatments and the devastation never do. Awareness of childhood cancer is hard. It means acknowledging what these kids and their families experience. It means allowing yourself to imagine standing in those shoes, even if you can’t bear to take even a step in them. It means, ever so briefly, letting your mind try to wrap around the fact that children get cancer, and just how horrific it is.

But today, just for a moment, I plead with you to let yourself go there. Imagine it’s your daughter under the blanket in the recliner spending her whole day getting “therapy” that will make her vomit, lose her hair, and will hopefully battle the cancer  trying to destroy her. Imagine it’s your son who just got a blood transfusion that will boost his energy, at least for a few days, until the chemotherapy destroys too much of his hemoglobin again. Imagine coming to terms daily with your child’s mortality, and praying they’re in the approximately 85 percent of children who survive.

Then do something about it.

Follow Alethea at Ben’s Writing, Running Mom.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Melanie at her book signing

How My Neighbor's Son Inspired Me to Write About Childhood Cancer


My experience with pediatric cancer began with a plea for prayers from a neighbor whose son had fallen ill. The call for help came by email, when I was still living in Park Slope, Brooklyn, but I didn’t know these particular parents or their child; they were just people who lived in my neighborhood. People like me. With a child like mine.

I remember clicking on the link to their blog. It was 2006, and blogs were a relatively new thing back then. At first, I found it hard to follow the medical jargon in the mother’s message. Then I got to the word “cancer” and my breath caught. This boy was only 4 years old. How could something like this happen? I’d always thought of cancer as a grown-up disease, not something that affected children. Well, I was wrong. Cancer is the number one cause of death by disease of children in the U.S.

In the weeks that followed that startling discovery, I read blog post after blog post written by pediatric cancer families, usually while crying into my laptop. My first child was 3 years old at the time. His little round face was still pudgy, his eyes huge — he was just a baby. So was this child with cancer. The statistics I was reading were terrifying. At the time, neuroblastoma had a 30 percent survival rate (and that’s just 5-year survival). It almost always relapsed. And it was such an aggressive cancer, there was no such thing as a cure. And yet, less than 4 percent of the National Cancer Institute’s budget goes to all childhood cancers combined.

I tried to imagine what that would feel like, facing a future without a cure for my child. I would be desperate for answers, for information, for the right path to take. I clicked from one blog to the next, witnessing how pediatric cancer families shared detailed, minute-to-minute accounts of their experiences in the desperate hope that their collective knowledge would lead to answers. And awesomely, incredibly, it has.

Melanie at her book signing
Melanie.

When one of the leading pediatric cancer research hospitals said they needed funding to continue their research into groundbreaking antibody treatments, pediatric cancer families united to literally make that happen. That effort was the beginning of a 501(c)3 non-profit called Cookies for Kids’ Cancer, which I supported as a volunteer baker in its founding year. In those early days, I was just grateful for a chance to do something to help, even if it was as little as baking cookies in a crowded rental kitchen space along with dozens of volunteers—people I didn’t know at the time, but whose stories never left my mind.

When I wrote my debut novel, “Counting Thyme,” I didn’t set out to write a cancer book. I wanted to write about family, and siblings, and the myriad feelings you have at age 11, when the world is just coming into focus in a grown-up way. I ended up writing about a girl who felt all of those things in the shadow of her brother’s battle with neuroblastoma, an experience that touched every member of their family in very different ways.

People often remark on how authentic the family in my book feels, which is a compliment that all writers crave. I wrote them that way because I know these families. I’ve read their words. I’ve baked beside them. I’ve cried with them, too. I’ve sat there, shaking, unable to accept the reality of a diagnosis, a relapse, or the death of a child.

I owe a debt to those families who shared their experiences so freely, in the hopes that the knowledge would spread, and somehow things would change. So far, banding together has had a tremendous effect: Cookies for Kids’ Cancer alone has funded 80 childhood cancer research grants, leading to 32 promising new treatments and clinical trials available to children fighting cancer today. But there is still more work to do. And I am proud to be a part of that effort to spread awareness, reader by reader.

The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

Deja, in a dress, smiling

When My Daughter's Doctors Mentioned the Word 'Cancer'


Deja smiling
Deja.

My daughter, Deja, was born with severe combined immunodeficiency (SCID). Her childhood was never “normal,” but it was unique and she spent it with her family. She was a sassy daddy’s girl and she made sure everyone was aware of this.

Deja had a life full of biopsies, multiple ultrasounds, X-rays and blood draws. Her last trip to the ER was for stomach pain. It was so severe at moments, she could hardly catch her breath. A scan showed there was an infection in the lining of her intestines along with pancreatitis, which can be painful. One morning she woke up and I noticed her belly was bigger. I noticed everything on her little body — being a mother of a SCID child means you notice everything.

Her belly continued to grow, even though her ultrasound didn’t show anything different. A CT showed compartment syndrome. She was rushed to emergency surgery, and in that moment, our life was thrown a loop. We knew this was serious. Things had taken a turn for the worse. Deja was kept in PICU after the surgery, with her stomach left open because it was too swollen to close. Every few days they would clean her stomach. There was an area on her intestines that showed up in previous scans as “inflammation.” They biopsied this area again after the surgery.

We sat down at a small table outside of PICU – me, Deja’s father, and two of Deja’s doctors.

As the words “B-cell lymphoma” and “cancer” rolled off their tongues, our hearts stopped.

Deja was my soldier. She was the definition of the term “beating the odds.” I just knew she could get through this too. Even though we were told throughout that this was a possibility, it’s different when it’s confirmed and you hear “your daughter has cancer.”

Deja’s father didn’t say much. At this point, I really think it didn’t quite sink in. I immediately texted our family and our close friends. They planned to start chemo. We were told it would be a rollercoaster ride from then on out. That was an understatement. Deja went up and she would come back down. There were several times they thought that “this was it,” but she kept on going.

Our last time in the PICU, Deja’s belly again grew bigger, making it very hard for her to breathe, so they had to intubate her again.

I cried and cried in front of her.

She looked at her dad and I and said, “It’s OK, I’m not going anywhere.”

Deja was always the strong one in these situations and took on everything with full force. I remember playing her favorite “Frozen” songs next to her and just crying because I couldn’t wait to hear her sing them another 200 times. As the days passed, I could see the doctors’ faces were less and less hopeful. I could hear it in their voices. She used to squeeze our hands, even while she was on so many medications to keep her asleep. She would nod her head for us and she would still manage to give attitude. That’s what she was made of.

One day she stopped doing all that.

I knew she was tired.

Her eyes didn’t look the same, her skin was different and she didn’t respond as much as before.

On April 19th, around 12 a.m., we were told to call everyone in the family, as they didn’t think she was going to make it for another nine hours. A few nights prior we were told almost the same thing, so I was sure she would just push through this the too. We all crowded around her for hours, talking to her, crying and just pleading with God not to take her. I almost felt as if I was in another world watching this happen, as if it were a movie.

Mandy with her children.
Mandy and her children.

My little girl was dying. I’ll never forget her smell and how her body felt. Then, they declared her time of death. I hovered over my baby and said I was sorry and I love her so much. We washed her and dressed her and everyone saw her for one of the last times. Watching her father place his lifeless baby girl on the stretcher was one of the hardest parts I’ll remember. He was broken, and so was I.

Today, we relive every moment of that day in our heads, over and over. Today we take nothing for granted. We live by loving each other to the fullest. We don’t sweat the small things because they are just that, small things. We keep Deja’s memory alive with her bright smile and sassy attitude. She has shown us and so many others to never give up and push through even the most complicated situations. She is the definition of a warrior.

We hug our other children tighter every night and we never leave without an “I love you.”

Life is too short.

The Mighty is asking the following: Describe a part of your or a loved one’s cancer diagnosis that doesn’t get talked about often. Check out our Submit a Story page for more about our submission guidelines.

little boy in karate suit

Why I Go Gold in September Even Though My Son's Ribbon Is Green


Chances are, if you stumbled upon this blog, you are here reading about my now 6-year-old son Oakley’s journey with Prune Belly syndrome and kidney disease. Both are life-threatening and serious diseases with no cures. I am a huge advocate for both diseases to bring much needed awareness.

Prune Belly syndrome only effects one in 40,000 births each year so it is little known. My son’s journey with Prune Belly syndrome, or PBS, has been a rough road. He has had countless procedures, tests, and surgeries. He has spent holidays and birthdays in the hospital. He has missed out on a lot of things a healthy little 6-year-old boy should have experienced. He can’t swim during the summer due to a catheter or a stoma. He cannot engage in contact sports as much as he loves football. No sleepovers due to the medical procedures he needs during the day and overnight to keep him stable.

little boy with prune belly syndrome after surgery

But, he is alive.

When you give birth to a child who was not expected to survive, you claw and grasp for any opportunity you can to learn and educate yourself as much as possible. You stay up late at night researching and looking for any type of study you can find that may benefit your child to improve their quality of life. You join support groups online and you pound so much information into your head it could explode. With my son’s condition, he doesn’t really fit into any single category. I’ve joined and become part of many different groups and circles of friends to put my own little roadmap together for him.

A few years back Oakley started getting little pinpoint dots all over his body. Then his lymph-nodes started to enlarge. I took him to the pediatrician, and they ran blood work. Several more times this “rash” presented itself. They ran so many different tests to find the cause. I remember them telling me this can be a sign of a type of cancer called leukemia. My heart dropped. After more tests and meeting with a hematologist, he was diagnosed with a mild platelet disorder.

Some aren’t that “lucky.”

My first experience with childhood cancer that hit home for me happened a few years ago. I met a woman who had a son a similar age to my son and also had kidney disease. We met in an online support group and really clicked. He was on dialysis for hours each night and was just buying time until he was old and big enough to receive a new kidney. His mom and I would talk often on the phone and offer support to one another. She just lived a few hours away from me, and we ended up meeting in person a short time after. I fell in love with her love for her son. He was adopted and shortly after is when they were notified he had serious health issues. They were given the chance to back out of the adoption, but they didn’t blink an eye. They took that sweet baby home and loved on him.

I remember talking to her on the phone one evening and hearing her son cry in the background. She said he was being fussy lately. The cry wasn’t a normal cry to me; it was a hurt cry. Something was hurting him. She was determined to get to the bottom of it. They thought maybe his dialysis catheter was suctioning inside of him causing discomfort. But it wasn’t that. He was scheduled for an ultrasound.

One evening I was driving to the store. My cellphone rang, and it was her. I answered, and she said, “Sarah, they found something, and it isn’t good.” She told me he had a large mass on his liver, that it was cancer.

My heart sank; I started crying. Why? How? This sweet baby, his sweet mama. His tumor wasn’t able to be resected due to a previously diagnosed bleeding disorder.

Another mom from our kidney support group scrambled to get me a flight to Chicago to say goodbye, but it was too late.

Michele called me, “Cole’s died.”

Cole Joseph Vida died on November 26, 2011.

Cole

Cole was worth more than 4.

September is Childhood Cancer Awareness Month.

Talk about it, write about it, donate. It’s not contagious, but it can come knocking on your door anytime. Day, night. Summer, winter. Yes, your child. Your innocent, beautiful child who doesn’t have an evil bone in his or her body.

I understand it makes some people uncomfortable seeing children in their weakest state. Children in the process of dying in their parents’ arms. But if this is what it takes to get people’s attention to save these kids, that’s what has to be done.

I frequent the same circles as families who have a child with cancer. We go to the same clinics and the same hospitals. We go to the same events our children are featured at.

Our children might have a different diagnosis, but we get one another.

The hurt is the same.

There is one hurt I never hope I have to feel, which is the loss of my child from his disease. I don’t ever want to hear there is nothing more that can be done. I don’t ever want to have to sign those Do Not Resuscitate papers. I don’t want to be called into a small room while my child was in surgery to be told, “I’m sorry, he didn’t make it. We did all we could.”

No parent should ever have to endure that.

But they do.

25 percent of children with cancer die

35,000 children are being treated for cancer.

13,500 children are diagnosed with cancer each year.

This is why I go gold even though my son’s ribbon is green. It has to stop.

Yes, my son’s life matters. Yes, his disease needs awareness.

But this month, I go gold. This is for those lost and those still fighting the fight of childhood cancer, a battle a child should never have to endure and a battle any parent should never have to watch their child fight.

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