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

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.


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

Deja smiling

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.


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 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.


When People Say, 'God Only Gives Us What We Can Handle' About My Child's Cancer


People often try to offer comforting and encouraging words to me as I care for my daughter with childhood cancer. One of the things that people say is, “God only gives us what we can handle.”

I want to discuss this phrase.

To start, let’s look at the first part, “God gives us.” This tells me God has given me this situation. So when you say this to me, it feels like you are saying God has placed that tumor in my child’s head. God gave me a sick child. God is the reason my child has cancer.

If I were not a believer in God, I’m not sure that would make me very interested in learning more about Him.

Then, let’s look at the second part, “what we can handle.” I assure you, I cannot handle this. This mass in my daughter’s head wasn’t placed there because God knew I could handle it. I’m not any more equipped to handle it than you or anyone else.

Again, if I were not a believer, I would think God obviously does not know me very well if He thinks this is something I can handle.

Now, let’s look at what the Scriptures say about troubles:

The Lord is a refuge for the oppressed,
a stronghold in times of trouble.  Psalm 9:9

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.   Psalm 138:7    

In this world, you will have trouble. But take heart! I have overcome the world.  John 16:33

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  2 Corinthians 1:3-4

These verses tell us we will face troubles. Hard times will come. They don’t tell us He will send them. They tell us they are there. The verses also say God is our stronghold, He saves us, He has overcome the world, and He will comfort us. It isn’t about what we can handle but what He can handle alongside us.

Perhaps, instead of “God only gives us what we can handle,” what should be said is, “God helps us handle what we are given.”  

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.


My Husband's Answer to Our 4-Year-Old's Question, 'Is This the Part Where the Girl Dies?'


My husband is a man of few words, but that does not stop the deep thinking going on in his head — thoughts he rarely shares about his little boy we couldn’t save. So when he busted out some powerful words the other day, I was a bit taken aback.

We were getting ready to watch a video of a pastor whose daughter had died from a terminal form of pediatric cancer called DPIG… as Ron was setting up the video, Lily, my death-obsessed 4-year-old asked, “Daddy is this the part where the girl dies?”

Our youngest daughter goes in and out of understanding what has happened to her missing brother. Death seems to not only petrify her but also haunt her as she comes to grips with the fact that children get sick and though not all sick kids die, some do and somehow that happened to her brother and best friend, Matthew.

All very hard concepts for a little girl comprehend.

So when she inquired about the part in the video where the little girl dies, I cringed a bit hoping she doesn’t say that loudly in line at Target because she has been coming up with some good ones in line at Target lately… but it was my husband’s words that brought on uncontrollable tears and sent me out of the room in search of clarity.

Without skipping a beat her wise daddy replied, “No honey, this is the part where she has a beautiful life.”

His words just kind of hung in the air with weight and value that I needed to process alone — to better understand more about the part where you have “a beautiful life.”

Lately I had been stuck in the part where Matthew was sick and died — another
anniversary marking the day cancer took my boy was taking me to extra special places of negativity. Another first was approaching with a swiftness down our road of grief — “a first” I was trying to not let matter, but it kept etching away at my thoughts anyways. Last Monday was not just the day my boy died; it also marked a certain increment of time. Matthew has now spent more years out of my arms than I was allowed to have them wrapped tightly around him. He never got to be 3 years old, but he does get to be three years dead.

All hard concepts for a mother of any age to even want to understand.

I stumbled into a dark room feeling my warm never-ending tears fall. I let Ron’s words sink in and guide my heart towards healing. “The part where you have a beautiful life.” It seemed so loud and far more relevant than all the other parts of life — being born and having to die are experiences that will happen to each one of us, experiences in life that when they do in fact come we have little control over. But the part where we have a beautiful life, that’s the part we get to choose — the who, the when, the how — it’s where humankind still thrives no matter how ugly life is.

My Matthew was born with cancer. Everything about children having to fight cancer is fairly ugly in regards to how hard these little ones must fight, how it tears families apart, how cancer kills ones hopes and dreams. I despise and loathe that about cancer, but everything about the person my Matthew was and is I find very beautiful. His life was one that still radiates beauty into this world and somehow I was chosen to be the one to give birth to that most beautiful life force. Me. It was me who was chosen and given the privilege of being called Matthew’s mother.

It is a beautiful honor to be the caregiver to a cancer warrior.

When the third anniversary of Matthew’s death finally came, I woke up angry. As soon as my eyes opened I closed them and prayed to the God I know, reminding him of his promise he made to be near to the brokenhearted because my heart felt especially broken that morning.

Three years of being a mother to a child who does not exist in this world is just not what I envisioned motherhood to be. It’s all really just that simple. I want my baby back. It’s a want I can’t have and can’t satisfy. It’s like when you go without eating. You feel hungry and that can make you grouchy and left feeling unfulfilled. And on the third anniversary of Matthew’s death I felt famished.

I wanted to post something on Facebook that spoke about that hunger and of that wonderful child I got to call mine, but the words that came seemed cheap and ordinary… and I just felt like I had nothing good to say. Slowly I began to commit myself to just having a crappy day filled with crying, heartbreak and despair. It would have been loads of fun for a grieving mom like me, but then something beautiful happened.

I began to get text message after text message of encouragement and affection. Beautiful flowers arrived and Matthew’s Facebook page was filled with so many heartfelt messages of love and remembrance of my boy who spent nearly every day of his life in a hospital fighting cancer — the boy who hardly had the chance to meet anyone but whose beautiful life inspired thousands to live better.

Those powerful words of adoration and remembrance are a universal language
every grieving mother yearns to hear. Thank you for speaking them.

Ron also took the day to keep on his “saving the family” roll and decided he would close up his store and we would spend the day our family lost Matthew at the beach. The kids liked his idea for the day way better than mine, and in all honesty I was glad to follow his lead.

And what a day at the beach it was. The beach is always a new opportunity to add to my sea glass collection. The kids love helping, and for the last few months we have been on a special hunt for a piece of glass that is heart-shaped. Though I never turn down a piece of sea glass and will always have room for one more, I recently was exposed to another collector of sea glass who had the most exquisite collection of heart-shaped sea glass, with each piece was so unique and beautiful, tiny fragments of multicolored hearts. I instantly fell in love with the thought of my very own collection of broken heart-shaped sea glass. This specific quest had been going on for months without any success, but on that day glimmering in the water was a perfectly heart-shaped piece of green sea glass. My eldest daughter looked so proud when she placed it in my hand she — a gift for her mother, one she knew I had been searching for.

Lily also caught her first sunset. She patiently waited until not a sliver of sun was left, not wanting to miss a moment of its glory. Though there is something magical about watching the sun go down, it’s not nearly as magical as watching your daughter’s face as she discovers the splendor in her first.

husband and daughter on the beach
There are parts of my life I would not judge as being beautiful. Some days it all feels very ugly and dark, but every day, opportunity to find beauty awaits me. My circumstances are not what make my life beautiful; beauty lies in the eye of the beholder, and I am the beholder in my life, the only one able to appreciate the beauty still growing around me. Certainly, some days take an effort to find shimmery and beautiful moments, but
collectors are choosers.

It’s a choice I have — to collect these beautiful moments. Some days I come up empty handed, but other days I come up double fisted, and it is those double fisted days that have me addicted to finding more beautiful moments.

The Mighty, in partnership with Fuck Cancer, is asking the following: What’s the best advice you’ve gotten or a mantra that spoke to you following your diagnosis?  Find out how to email us a story submission here.


Those 'Normal' Moments Become the Most Memorable When You Lose a Child


When your child dies, you are forced into a new way of being no one would ever choose. It feels like you are suddenly stranded in a desert of pain where all you can do at first is live in the past and the memories of times when your family was whole.

We all have those big moments in life we will never forget; they are etched into our consciousness as pivotal memories. They may be glorious or devastating – sometimes they are both. I have had many devastating, sorrowful memories I will never forget, the pain will never leave me.

There are images of sorrow and pain so intense they make me cry… every… single… day. I also have many incredible, happy memories — amazing, wonderful moments in time I will hold onto forever and cherish with all my heart.

But in between, I remember days and months of glorious un-eventfulness, filled with ordinary moments. These are the ordinary moments we tend to take for granted and not give a lot of thought as we go about our busy lives. But if you really consider it, these everyday moments are the foundation of our life; we may not recall every one in vivid detail, but they make up the background of our lives and are very special.

These quiet moments help shape who we are and how we think as we navigate through life. How I treasure those ordinary family moments when we could pretend that cancer never opened its dark door.

If you knew my son well, you would probably agree he was the king of derpy faces and he had a sarcastic wit. In so many of the pictures I took of him as a teenager, at the very last minute he would make a face. I would get so mad at him for ruining all the pictures. He would just laugh mischievously and give me the perfect smile, until I tried to take another picture and then it would repeat – much to my frustration!

author's son making funny face

I have a whole series of funny face pictures he took on my phone one day to entertain himself as we made the familiar drive home from the children’s hospital after he had received outpatient chemotherapy. At the time I chastised him good-naturedly for putting 30 funny face pictures on my phone!

I never really gave much thought to these imperfect images at the time. You see, I fully intended to delete them from my phone. After my son’s death as I frantically searched through all my pictures and memories, I discovered something quite astounding. These candid, “derpy” pictures are some of my most cherished! They really show my son’s funny, zany Noah self. I see his spirit so clearly in these pictures — how he used humor to always get through the rough patches.

Who knew at the time these things would become some of my most treasured memories?

Who knows what some of your most treasured memories will be as well?

So enjoy your “normal”; treasure it and realize the significance of a kind word or gesture and of just being present when you are tired and stressed after a long day. Really notice your “normal,” and you will see how wonderful your life really is.

Life can change in an instant — cancer steals this glorious normal from too many of us. Enjoy a normal day so many people fighting this battle would give anything to have back. Life is never normal after cancer; it is learning to survive and knowing you will never, ever live the life that you want most.

So enjoy every minute, and may the derp Gods be with you…

Follow this journey on Noah’s Blue Ribbon Brigade.


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