Young cancer patient standing in front of hospital window

To the Cancer Patient Who Changed My Life in 4 Minutes and 51 Seconds

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To the girl who changed my world in 4 minutes and 51 seconds:

You were 17, a patient in the PICU. I was 22, a brand new child-life specialist. The child-life specialists you knew and loved were off for the weekend, so I was called to your room. You were so gracious, understanding and welcoming. You reasonably had much more experience with this than I did, but when I asked how I could help, you said you wanted me in the OR with you, and you wanted to listen to Adele on the iPad while you fell asleep. A girl who knows what she wants… I like it!

An hour later we were wheeling into the OR, listening to “When We Were Young.” I’d never heard it before; you, an avid Adele fan knew every single word. Trying to keep the mood light in the operating room, I told you we should pretend we were at an Adele concert together singing our hearts out. I set my iPad on your lap and did the awkward concert thing where you wave your arms back and forth to the beat of a sappy song. You know the one. The anesthesiologist looked at me, shook his head, and said “Wow… you must, um, go to a lot of concerts.” You let out an audible giggle from under your mask just before the anesthesia finally took over. Mission. Accomplished.

I heard from my child-life coworkers a few days later that you had already decided this would be your final surgery. You had courageously fought cancer once, and came out victorious on the other side only to have the cancer return with a vengeance. You had endured endless inpatient hospital stays, port accesses, lab draws, chemo, radiation, follow up scans, and many PICU admissions. You had made it through a ridiculous number of invasive surgeries that resulted in chest tubes, central lines, limb amputation, and I cannot even imagine how many painful recovery days you had clocked. But this, this was to be the last. No more chest tubes, no more anesthesia, and no more PICU. No more pretend concerts in the operating room.

Your soul was so, so tough, but your body had had enough, and you knew it. I admired and respected your brave decision with every piece of my being.

I couldn’t help, though, but selfishly feel sorry for our loss that was to come. You brightened the unit every time you were admitted, sharing your beautiful artistic skills with other patients and all the staff. When in remission, you tore it up on the dance floor at oncology prom, inspiring other patients to push through their tough days. You made the world a better place every single day, and I hope you knew that.

I am so sorry you spent most of your adolescence isolated in a hospital bed. I’m sorry that despite all of our medical advances, your cancer prevailed. I’m sorry you had to grow up so fast, even if you did it so gracefully. And mostly, I’m sorry I didn’t get to meet you much, much earlier.

I wish you were still here so I could tell you this in person. I wish I could tell you I was so incredibly proud of the impossible decision you had made for yourself. I wish I could tell you I can’t listen to Adele without thinking of our OR jam session. I wish I could tell you how much I appreciated that moment with you, even at the ridicule of the medical staff. I wish I could thank you for what your unspoken words taught me. I wish I could thank you for trusting me and going along with my antics. I wish I could thank you for showing me what courage really means when it is lived out. I wish I could thank you for, simply put, making me a better child-life specialist and human being.

I was driving home when I heard your song on the radio tonight. I thought of you, just as I always do. I thought of how grateful I am that our paths crossed, even if only for what seemed like a brief moment. I thought of your beautiful artwork hanging in the child-life office. If I had to venture a guess, I’d say I will think of you every time I hear this song. Just like I did tonight.

So, to you, the incredibly brave girl who changed my world and my heart in (approximately) 4 minutes and 51 seconds:

Thank you, and I’m sorry.

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How Play Can Help a Child Cope With Stress at the Hospital

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As a child life specialist, I’ve seen countless examples of play transforming a child’s mood in the hospital environment.

I remember the day when one particular little boy lay curled in a ball beneath the covers in his hospital bed, his bald head hiding beneath the sheets. He had not showed up in the playroom that afternoon, which was unusual. This was a kids who waited eagerly each day for the playroom door to open and was often the last one to skate his IV pole back to his room when we closed. I had yet to see him without a smile. He seemed to me like a content child with a quiet maturity that went well beyond his seven years. He took his medical treatment in stride and enjoyed the company of his brother and sisters, as well as just about every activity the playroom had to offer.

But not this day. It was mid-afternoon and we had yet to see him. His mother stopped by and informed me he had a complication which would require surgery.

The little boy was very upset and refused to leave his bed or talk to anyone. The removal of the catheter that allows patients to receive chemotherapy without an IV is difficult for any child, but it was important to find out what was upsetting him in particular. Understanding the details of what was causing this typically cheerful boy to retreat under the covers would give me a clue about what would help him cope.

With a soft knock, I entered his room and took a seat by his bed. His father sat vigil in a chair close by. I gently coaxed the boy to tell me what was wrong. He was having none of it.

“We were wondering why you weren’t in the playroom today. Your mom told me you have an infection.”

Silence.

“It can be pretty disappointing to have to go in for more surgery.”

Not even a nod.

“I am thinking you might be too upset to even talk about it. So I was wondering if you could draw a picture about the most awful part of what is happening. That way, I can understand a bit better what you are going through.”

I placed a piece of plain, white paper on the bed, along with some markers.

It took a few moments, but he uncurled from the fetal position and scooted up to a half-sitting position. He reached for a marker. I breathed an inward sigh of relief and sat back to see what he would draw. Placing his hand palm down in the center of the paper, he outlined it with a green marker. He still wasn’t talking, but he was communicating something important. He held out the drawing, and I took it from him.

“I see a hand outlined in green,” I said.

I had no clue what it meant. His father was the one who piped in with an explanation.

“He’s mad because without the Broviak, he will have to have an IV in his hand. It hurts and it’s harder to play with an IV there.”

“Oh, I get it,” I said. “Yeah, having to get an IV is no fun. And having more surgery stinks, too.”

I paused to see if I was on the right track. He wasn’t speaking, but he was making eye contact.

“I do have an idea though. How would you like to make a big mess that you don’t have to clean up?”

A tiny smile appeared on his face.

“Okay, then. I’m going to set something up and let’s see what a big mess you can make.”

Stepping out into the hall, I headed for the utility room on the unit. On the way, I snagged his nurse.

“We’re going to make a bit of a mess, but I promise I will clean it up,” I assured her.

She had no complaints. I gathered supplies for what I had in mind: one bedpan, a roll of toilet paper, a large piece of chart paper, tape, and an armload of towels and sheets. Reentering the little boy’s room room, I stopped at the sink to fill the bedpan with warm water, placing the filled bedpan on his rolling bedside table. The sheets and towels went on the floor against the wall opposite the foot of his bed. His eyes followed my every movement, showing curiosity and anticipation

So, here’s the deal.” I said. “Lots of kids have stuff happen in the hospital that they find upsetting or scary. Sometimes it helps to get these feelings out in a physical way. I am setting up a target game, where you will get to throw wet toilet paper at what is upsetting you until it is completely destroyed. The question for you now is, do you want to destroy the drawing of your hand, or is there some other thing you could draw that you’d like to obliterate?”

He picked up a marker, so I brought over the big piece of chart paper. He got right down to work, drawing a huge needle that took up the entire sheet of paper.

“Oh,” I said. “That looks like the needle that might have to go in your hand.”

He nodded. When he finished, I took it from him and taped it on the wall opposite his bed.

“Now for the demonstration,” I said, reaching for the roll of toilet paper. “See, you take as much as you can to make a nice, big wad.”

I unrolled it from the tube, wrapping it around my hand.

“Now, here’s the most important part. You dip it in the water, but you don’t squeeze any of the water out, so it’s sopping wet.”

He was riveted.

“Throw it as hard as you can at the target, yelling what makes you mad or scared.”

Winding up my arm like a star pitcher, I let go of the wad.

“I hate needles!” I yelled.

As my voice filled the small room, the toilet paper thwacked solidly against the drawing of the needle, sticking there a moment before falling to the floor. I turned to him.

He sat straight up and reached for the toilet paper roll. He followed my actions, and as he whipped his TP bullet at the target, his voice rose to a throaty yell.

“I hate IV’s!”

I applauded him and he took it from there, yelling out the things that had been bottled up inside, until the chart paper sank to the floor in defeat. For the last few tosses, he rose to his knees in the bed and used his whole body to fling the wet mound at the target. It took a while to clean up the stray clumps of sticky toilet paper and mop the floor with towels, but I didn’t care one bit. He was now talking animatedly with his dad, and he ended up in the playroom not long after.

I learned about this technique at a play therapy training seminar from Heidi Kaduson. She writes about the activity in her book, “101 Favorite Play Therapy Techniques Volume III.” Many techniques from other disciplines are readily adaptable to the hospital environment, and this one in particular has brought relief and laughter to many children and teens facing extended hospitalization, isolation and painful procedures. I’ve also used it in a parent respite group with great success. If the child is unable to draw or write, they can always dictate to you and have you act as the scribe. I’ve learned that Kleenex and paper towels don’t work as well as toilet paper. They don’t make that wonderful, “thwack!” or provide enough proprioceptive feedback to the child. I’ve seen specialists experiment with food coloring with great success, but of course it is a bit messier. Taking before and after photos for the child, preferably on the family cell phone if there is one, can be especially validating. Either way, the process of getting a child’s fears or anger onto a piece of paper and role modeling how to obliterate it, is a win-win for all.

Bull’s-eye!

A version of this post originally appeared on PediaPlay: Connecting, Coping & Healing Through Play.

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 Thinkstock image by Keith Brofsky

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

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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.

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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

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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.

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

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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.

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