Author: Sheila Quirke

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Eleanor Ewoldt 

Cancer is awful and childhood cancer seems worse because it takes dreams, longevity, and sometimes even the life itself.

Pain feels like a right of passage in adulthood but so out of place in the life of a little one.  They should be falling off a bike and scraping a knee, not being stuck with needles, lulled into unconsciousness, and cut open…all to try and save their lives.

Pediatric cancer.

So often it feels like there is no such thing as a silver lining in this gathering of illness, pain, and bad news.  Our choices are usually death or damage and each new week brings crazy hard things.

But there’s something amazing and good in the middle of it even on the hardest days. You heard me… I said it.  Good – even precious – in the bad.

You’ve joined the ranks.

You’re one of them… the ones who look old beyond their years with eyes both kind and weary that say, “I know what it feels like” in a single glance.

These are the ones for whom little things can be terrifying and big things are handled without even flinching.  Other people’s nightmares are their every day, even “normal” life, and they eat “worst case scenario” for breakfast every morning.  And their crazy skills and superhuman strength stems from their hearts – their hearts that are walking around outside their bodies – their tiny bald hearts that live attached to IV poles and chemo.

And while the cancer and all that comes with it is sorrow of the greatest and most breathtaking kind, there is a yet a special joy – for there is family and community in this cancer world and it’s crazy because it makes something similar of us all in one way or another.

It doesn’t matter where you started, how you live, vote, or devote… we all come to the cancer ward with our shadows, weariness, and the knowledge that everything we do may never be enough.   My heart hurts just thinking about it.

But does it ever hit you?  That you know how to flush a central line like I know how?  And you know what it’s like to be up at 2:00 to untangle IV cords or administer a medicine and so do I? …and we’ve never even met!

Our hearts connect.  Yes, the hearts inside our bodies, as we form friendships of the tightest kind – the kind that at times, need no words.  But those pieces of our hearts, our cancer babies, they connect too.  Many of them have the same oncology staff family – the doctor who makes your baby laugh might make mine giggle too.  And the surgery that wipes him out, weak and weary…well, that same surgery might have been part of your baby’s story too.

You can see it in their eyes as they meet each other in the halls of the hospital – there’s a curiosity and sometimes even a hint of awe to see a mirror image and be reminded that they aren’t the only ones – without hair, without immune systems, whose paranoid mom makes them wear a mask, who has learned to walk in step with an IV pole, who throws up – and a hundred over things.

There was a time when Chase refused contact with anyone at the hospital, until he saw a little girl and realized that she had a port too.  You could see the great dawning on his face that she knew what it would be like to be stuck in the chest and she knew what it would be like to be scared, and they’ve been friends ever since because, you see, the suffering is terrible and wrong, but it’s still a connection point.

And I promise, cross my heart, that I’m not making this up for the sake of a positive outlook in what, for many of us, is one of the hardest months of the year.  I can write these things because I’ve lived them and I bet, on some level, you have too.

From the parents in an online group, to the parents you met that one time in the halls of the hospital who have since turned out to be your best friends, to watching your babies connect with each other long after chemo goes away – these experiences, this knitting of hearts are so precious.  And without these awful-awesome connections, I might just pass you in the grocery store, on a street corner, in the local coffee shop, and we’d just stay in our separate worlds and ways.

As I started writing this post, I sat in the outpatient waiting room while my unconscious son was rolled in for yet another MRI, and not too many miles away, one of the cancer mama sisters of my heart (how’s that for an awesome reality show title?) sat in the hospital waiting room while her son lay in his MRI too and there was a text chain of messages amongst the two of us and the other mamas, sometimes dozens of texts, as we all held each other up…as we always hold each other up.

And to think that I might have passed one of them one day and never known them, these sisters of my heart, to think that our children may never have known each other and learned to play together – well, that is a tragedy too.

I hate the cancer with all my heart, but I wouldn’t trade these precious connections. We are all in the ranks, in the trenches together.

We are cancer families and there is nothing so precious as standing shoulder to shoulder with my cancer mama friends in that sisterhood while the pieces of our hearts run, play, and compare port stories.

Never stop choosing joy in your journey, for you are not alone.

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Ellie Ewoldt is a mother to four, a wife, daughter, sister, and friend.  Her skills include being able to keep several plates in the air, while simultaneously warning small children about not throwing plates, labeling the “weird stain” on the rug correctly, and now, thanks to the cancer life, performing emergency triage on a central line in non-sterile conditions.  Her days are spent caring for quickly-growing children – one of whom is surviving brain and spine cancer with special neurological needs – and continuing to chronicle life in the big and small things alike.  Her first book, Chase Away Cancer will be available in May 2016 through Tyndale House.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Vashni Nilon 

Last summer, my 12-year-old daughter called me at work. I don’t even remember what we talked about, but I do remember that we were both saying, “I lurve you,” “No, I lurve you,” and so forth.  Minutes later, she called screaming in pain.  I remember yelling, “Get daddy!”

The next few hours are a terrible blur. Lucy lost the ability to speak. After 18 months of clean scans her aggressive brain cancer had returned. Not just in the original site, but in the opposite hemisphere, the brain stem, and in the fluid around her brain. Two days previously we had been shopping at the mall. Laughing, skipping down the halls and spending an inordinate amount of time deciding which large stuffed animal she would purchase with a gift card.  We were told that she could no longer be cured. Lucy was dying.

When Lucy was first diagnosed, we had hope.  But her Dad and I agreed – and we don’t agree on much – that if this day came, we would do what was best for Lucy. We would not spend the remainder of her days in the hospital, prolonging the inevitable, if it meant that she would have no quality of life. At this point, we were told that surgery was not possible and that there was no treatment that was known that would reverse the inevitable outcome. So we decided not to pursue treatment and were transferred to palliative and hospice care.

It should be noted that every day since then has contained some sort of guilt for not being able to cure my daughter’s incurable brain cancer. At first Lucy did not know of her prognosis, but she was an extremely intelligent, intuitive person. She knew something was dreadfully wrong.

A year ago, we had to tell our just-turned thirteen-year-old daughter that she was dying. It was, and remains, horrific. We tried to take our cues from Lucy and cram a lifetime into what turned out to be the ten weeks she was with us. If you knew Lucy, you know that she loved school. She was a very conscientious student, but also loved the social aspect. She loved getting her school supplies, her back to school outfit, and the anticipation of seeing her friends.

Last year, Lucy was to start eighth grade. She was really looking forward to finishing middle school without radiation, chemo, and endless doctor’s appointments. She was devastated that she would not have this opportunity. She decided, despite everything, that she wanted to go.

All of our energies were focused on getting my girl to school in whatever capacity she was able. Emails were sent, schedules were discussed and a huge meeting was held to discuss how on earth this was going to happen. Our palliative team was kind enough to send a physician and social worker to discuss Lucy’s care with the school. Lucy would need a wheel chair and would look different than she did last year due to the medications she was taking to keep her comfortable.  Some members of the school board were uncomfortable with the signed Do Not Resuscitate orders we would have on file and I also carried on my person.  The doctor kindly explained that these documents were protecting Lucy from a procedure that would cause her both physical pain and mental trauma only to have her die anyway in a potentially more painful way. I assured everyone that I would be with her every second. I carried rescue medications, a pillow and blanket and a lunchbox full of painkillers. Her comfort and dignity were my only priority. Even with the grief and uncertainty of life without her tearing at my throat.

As the first day approached, Lucy and I went school shopping and picked out some school clothes.  She bought a new Jansport backpack. I wheeled her around Staples and we got all the school supplies on her list as well as her brother’s. I took her to get a haircut and a mani-pedi. She even had an eyebrow wax. Some days I didn’t think she would be able to do it.

The first day of school came. Lucy watched from the porch as her brother got on the bus. She was so sad but I said let’s go get you ready.  She got dressed herself despite having to lift her legs with her hands to get her leggings on. She put on makeup – beautifully, I may add. She put a flower in her hair and her Lucy Belle Converse high tops on her feet. She walked carefully down the stairs and got in the car. Her self-ambulatory wheelchair was in the back. The day before we had put some owl stickers on it as Lucy wanted to “Jazz it up.”

I wheeled my daughter into the office.  I can only imagine the look on my face. I had made up my mind that if anyone so much as looked at her sideways, they would be hanging from their underwear from the flagpole in 10 seconds. That included all of the administration.

Her friends were there to greet us. I will never forget how she insisted on propelling the wheelchair herself as they formed an armada around her.  They were all in with the flagpole plan.  Lucy went to health class that day. She kept up with the other kids despite the tumors in her brain. She held herself  to the same standard. I stayed outside and fretted. When she came out I asked what the class was about. “Reproduction,” she said. “Not very relevant,” she added sardonically. One kid asked her if she had been in an accident. “No I have brain cancer,” she said.

Holy shit.

Lucy went to school almost every day for the next few weeks. Her wonderful art teacher, Beverly, hosted lunch in her classroom after art class every day. Her friends joined her. She always got out of her wheelchair and walked into the classroom. She carried her backpack. She decorated her locker.  I watched in awe.

My daughter, thirty pounds overweight from steroids, was in middle school, where a bad hair day can cause clinical depression.  Her mother, crying on a bench in the atrium. My daughter died twenty days after her first day of eighth grade.

About a week later, her chorus teacher wrote me a letter. She said that she was afraid to speak to Lucy. She didn’t know what to do with a terminally ill child. She told me that Lucy walked right up to her, smiled, and introduced herself. Even in all of her pain and confusion, my girl wanted her teacher to be comfortable. She was like that.

This year everything is different. There will be no ninth grade for Lucy. We have decided to host an exchange student from China, a girl who lost her mother.  I know Lucy wants us to take care of people and we want her brother to see that although we grieve, we are still here and can open our hearts to life’s possibilities.

I miss her every second of every single day. She was an amazing person, my Lucy.  I am a better person and mother for having known her. She is the bravest, strongest person I ever had the privilege to meet. Stay Gold, Lucy Belle. Stay Gold. We lurve you.

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Vashni Nilon is a cancer mom, bereaved mom, and mom of Tate. She is an acupuncturist and co-founder of Lucy Belle’s Rainbow, an organization that provides art supplies for children undergoing cancer treatment.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Rebecca Reddick 

I remember the first night sleeping at home, after cancer invaded our lives. Kyler was still in the hospital. My husband and I began taking turns going home to sleep. It was my first time being alone in the house since that early October morning when Kyler awoke throwing up after complaining of headaches for several weeks. I knew in my gut something was undeniably wrong.

A mere 24 hours after we arrived in the emergency room, my little boy stopped breathing. Code blue. A team worked together like a fine tuned machine to stabilize him as I freaked out and asked everyone in the room to just breathe. Kyler was rushed to the OR to remove a tumor in his brain, a tumor so big it was cracking his skull, a tumor so deadly it caused him to stop breathing.

That first night back at home was filled with an all encompassing fright. I recall peering into his room and feeling such a void without him there. The fear that he would never come home weighed heavily in my thoughts. I remember knowing how broken I would be if I ever lost him.

After 16 days in the PICU, 19 days on the Neurology floor, and 30 days at a rehabilitation center, Kyler got to come home. While it was a joyous day, there was still that fear lodged deep in my heart.

The pressure the tumor was causing, in addition to the impact of surgery, left my once highly energetic two year old with no mobility or the ability to speak. He had to relearn how to do everything, beginning with holding his own head up.

His diagnosis was rare, pathologists across the country could not give the beast a name. They only knew it was a highly aggressive brain cancer. Kyler contracted meningitis in the hospital which caused temporary cordial blindness, also extremely rare. Go figure.  I always knew he was one of a kind. But all of this, really?

Kyler was vocal very early in his life and his speech was the first thing to return. I remember him telling us over and over that he wanted to go home. Finally one day we listened to him and simply asked to be discharged. The doctor obliged.

Once Kyler came home, he thrived. His sight returned, he sat up by himself, he learned to crawl and walk with assistance. Not even all the toxic chemotherapy could keep him down or strip away his joyful spirit. Our house was a home again, his presence made it so.

We were all happy to be home, in our comfort place, with no doctors or nurses. Instead we had his favorite toys, books, and each other. Cancer did not exist to Kyler. He was unaware of the severity; he only knew he was where he wanted to be. Simplicity was something my son taught me to relish. Whether it be digging in the dirt, or eating the air, or lifting his head up to feel the rain tickle his face, he enjoyed life. He breathed life into this house.

But now this house is empty. There is no more pitter patter of little feet. There is no more bath time splashing. There are no more bedtime stories to read. There is no sweet voice calling out for Mommy or Daddy in the middle of the night. There is no snuggling in bed watching early morning cartoons. There is no more giggling, playing, or cuddling. There are no more squeezy hugs or sweet kisses. There is no more joy here. There is no more Kyler.

Cancer took my only child, stole him at the tender age of 3 years old.

This house is a place he brought life to. A place where there was extreme joy in the midst of despair. This house was also the place we watched him slowly fade away from us. The place where he told me he was done, the place where he took his last breath, the place where I held his lifeless body in my arms for the last time. Without him here, this house feels bare, like it has been stripped down to its frame and studs.

Now, less than a year after his death, we are faced with the dilemma of having to either move or buy this house from our landlord. I am so conflicted. This house was a place where so many great memories were made. Yet, is also a place where so much pain and tragedy occurred.

My heart says to stay. Kyler’s chalk artwork is still on the brick of the back of the house. His room is still completely intact, yet his hamper remains empty. I lay in his bed some nights, the place where he was last alive, and think about who he would be today. I long to have his little arm wrapped around my neck as we would cuddle there side by side. There are moments when I can feel his presence here. Moments when I walk into a room and can imagine him sitting there smiling at me.

Yes, this house is empty. But there is no more cancer here. There is no more pain and suffering. There is no more pokes, or chemo, or medications. There are no more gloves, or masks, or port supplies. There is no more waiting and watching cancer take my child from me.

If these walls could talk, they would be screaming for him to still be here. I know I am.

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If you don’t want to miss a single entry in the September Series, consider subscribing to my blog.  Here is how:

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.