The Day My Son’s Cancer Cure Almost Took His Life

On the morning of April 16, 2015, I thought that the worst day of my life was behind me. I couldn’t imagine anything worse than finding out 6 months before that Cub, my 5-year-old son and only child, had cancer. But I was wrong.

That evening, during dinner, he began having seizures and fell unconscious. I called 911 and in the few minutes that filled the space before the paramedics arrived, my heart sank with new fears. Cub had never had seizures before, and my mother’s heart knew that the evils of childhood cancer had even darker depths than we had yet experienced.

Once in the ER, the medical staff quickly accessed Cub’s port, drew labs, and hooked him up to fluids. He had seized 3 more times and there was evidence of internal bleeding. They sedated him for an emergency CAT scan, and the results showed bleeding on the brain. My precious little boy, now 6-years-old, had had a stroke.

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Further testing, including an MRI in the middle of the night, would reveal that there was also a clot in the Superior Sagittal Sinus of his brain. After lengthy consultations between his expert Oncology team at a renowned children’s hospital and the Vascular and Neurology teams at our local hospital, it was determined that Cub had experienced an extremely rare reaction to one of his chemotherapy medications called L-Asparaginase. It was known to cause, on rare occasions, bleeding or clotting. But in his case, it had become a “perfect storm” of sorts, and caused both.

Cub was sedated, placed on a ventilator, and hooked up to an EEG. He had around-the-clock care and observation with a nurse and mother who never left his side. I was warned that, if he regained consciousness, he might not be the same little boy who went to sleep 24 hours before. He might not smile. He might not tell jokes. Run. Play. Or speak. The last words I may have ever heard him say were, “This is so hard!” as he struggled to look at me while violently seizing one more time before his sedative took over his little body.

While they slowly brought him out of sedation, I steeled myself against the negative “what if’s.” I prayed, took cleansing breaths, and determined that no matter what, we would still share the love we had always had, and that I was going to do everything in my power to give my son the best life possible – no matter what that was going to look like when he woke up.

As my son began to regain consciousness, he crossed one foot over the other. 20150417_153457I squealed with happiness, smiled with the nurse and took a picture with my cell phone, updating family and friends of his progress. It was the first time he had moved since being sedated. A few hours later, he moved his lips around the thick tubing running down his throat, taped against his skin to keep it in place. He was mouthing “mommy.”

The first words he spoke aloud after the tubing was removed formed a complete, complex sentence. I was filled with a rush of joy and relief like I had never known. Within hours, veteran nurses were calling him “the miracle boy.” It was determined that he had no cognitive damage whatsoever. There was some damage to gross and fine motor skills, and a year later, he is still in physical therapy. But, he is expected to eventually make a full recovery.

While this is wonderful news, we must remember that my son had cancer, not vascular disease. We must remember that the medicines given him to treat this cancer were designed for adults. We must remember that the medicine meant to save his life by killing his cancer almost took his life by causing a catastrophic stroke in a 6-year-old.

My son is recovering from his stroke, and I rejoice in that every day. 20141127_121727But. Wouldn’t it be wonderful if children could be healed of their cancer without possibly sacrificing their ability to walk, to speak, to learn, or even to breathe on their own?

Wouldn’t it be wonderful if the treatment of pediatric cancer was more of a priority than it has been – with children having specialized treatments tailored to their individual needs rather than outdated medicines designed for adults? Wouldn’t it be wonderful if the cure wasn’t as dangerous as the disease?

I believe that CancerMoonshot 2020 is going to help that happen. With a vision for bringing immunotherapy to children across the nation, they will not only be saving children’s lives, but their futures – more laughter, more running and playing, more growing, and more life. Now that is a vision worth fighting for.

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Advice for Helping Siblings of Cancer Patients by Guest Author, Lynda Tinnin Young

Lynda

Lynda T. Young, MEd, MRE

Lynda Tinnin Young is no stranger to the impact cancer has on children and their families. A retired educator, Lynda lives in Atlanta, Georgia with her husband, John, who is also retired after spending his career doing cancer research. Over the years, Lynda has volunteered at Children’s Healthcare of Atlanta, where she befriended countless cancer families. Her experiences walking the path of faith and encouragement with those families inspired her to write Hope for Families of Children with Cancer. Lynda is also a professional speaker who shares her message of hope with families of children with not only cancer, but other chronic conditions as well.

We are excited to have Lynda as a guest blogger on The Cancer Mommy today! Please enjoy this excerpt from her book, Hope for Families of Children with Cancer.

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Siblings—it’s not easy being the well one.

Make time for siblings. Get on eyelevel and ask, “What do you want to do?”

There are over 15,000 children diagnosed with cancer each year in the United States and 370,000-plus childhood cancer survivors. There are at least that many children thrust into the cancer arena with them—their siblings—the well ones. Both are victims of cancer, which affects the rest of their lives. They’re on the same road, “But miles apart,” a sibling said.  We need to bring families closer together, and help them not to pull further apart.

Siblings are not small adults; they are children, with childlike perspectives and needs. It’s easy to shove a teen sibling into the adult role in your family—but they aren’t adults—they just look that way. They communicate in various ways with the child with cancer—depending on personality, age, where in birth order.

(sidebar: Each day of our lives we make deposits in the memory banks of our children. Charles Swindoll)

Viewpoints from siblings:

“My parent’s world is now Tiffany and all the rest of us stand in line—way down the line.”

“He’s the one who’s sick. Why do I feel like I’m the burden?”

“I feel invisible—everyone asks about my brother, or they just look through me. I have needs too.”

Viewpoints from the parents:

 “Cancer siblings are a wealth of misinformation. I’d never guessed he thought that in a million years.”

“I can’t meet all their needs—I don’t even know what they are.”

“As long as a sibling doesn’t demand attention I think she’s ok. I just wish that were true.”

Helpful Hints for those who’ve been there:

 *  Tell them the truth (use age appropriate words—ask your Child Life Specialist)

*  Widen the circle—have others help with siblings (be specific with the help you need.)

*  Keep everyone in the loop: sibling’s teachers, coaches, bus drivers, friends (and their parents), anyone working with               your child.

* Take a special time with your child and do what she wants to do.

*  Keep daily routines—this gives a sense of security.

*  Give them permission to let out their frustrations and fears. You aren’t the only one on this challenging journey.

Fill sibling’s emotional tank:

*  Touch—this includes hugs for teens too.

*  Time—stop, look eye to eye, and listen. Don’t just mumble, “uh huh’ when your child talks to you. Ask where sibling would like to spend time with you.

*  Talk—encouraging words give courage to keep on keeping on. They may get daily dosages of discouraging words.

*  Gifts—not particularly expensive, just something to say, “I’m thinking about you.” Choose something meaningful just for them.

*  Deeds—what does the child DO for others- thank her for those acts and find things to do for them.

(Taken from Dr. Gary Chapman’s books on Love Languages)

And now for their unique personalities:

If your child is an extravert, give them attention they need, and make sure they spend time with friends. They need a “people fix” each day!

If your child is an introvert, give them space—a place to be alone and regroup from other people and noise.

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I pray that these words encourage you as you affect the lives of your children, whether one with cancer or a well one. I pray that He will sweep away the fog, give you clarity to view each child, and strength to meet their needs—one step at a time.

Lynda T. Young, MEd, MRE

www.hopeforfamiliesonline.com

The You Are Not Alone book series:

Hope for Families of Children with Cancer

Hope for Families of Children on the Autistic Spectrum

 

Books are online, in bookstores (may need to ask for them), and on ebooks.

Leafwood Publishing.

(Taken from Hope for Families of Children with Cancer, by Lynda T. Young, Leafwood Publishing.)

That Time I Broke Down (edited post from November 26, 2014 luceleaf.wordpress.com)

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Cub resting after the long trip to St. Jude Children’s Research Hospital in Memphis.

The non-stop trip to Memphis took almost exactly 5 hours. Cub and I left the hospital in our hometown at 7:00 in the morning, less than 10 hours after his initial diagnosis of leukemia.

I was exhausted and numb. The night before had passed quietly, willfully ignoring the fact that I wanted time to stop – or at least for morning to come and reveal that it had all been a dream, despite the fact that I had never fallen asleep.

At first, Cub watched the receding traffic out the back windows, took stock of the various medical equipment stowed away in see-through cubby holes, and laughed at the funny sounds the tires made on the road’s changing surface.

And, at first, all I could do was watch him. I soaked him in as if I was a dry, crusty sponge desperate for the waters of life. My beautiful boy innocently enjoying an adventure, despite the IV in his ankle, the weakness in his blood, and the nausea that wracked his little body in relentless waves.

Eventually, the meds kicked in and he fell asleep. A member of the EMT transport team leaned towards me and asked if I’d ever been to Memphis.

“No.” I smiled, dragging myself to the surface for a little small talk – wanting to be polite. The 3 men on the team were working a double shift to get my son to St. Jude’s as soon as possible.

As we chatted, he revealed that he was a Memphis native. He had traveled a bit, but always came back home. He told me about the old-time flooding of Beale Street and the best place in town to listen to the Blues, if I ever get the chance, and then he started telling me about St. Jude’s.

He told me they only have about 100 in-patient beds. He told me he was amazed that we were getting in less than 24 hours after diagnosis. He told me how it was the best hospital in the world for “what your boy has.”

His words spoke hope to my aching heart, and suddenly we couldn’t get there fast enough. I wanted to get started – to have someone, an expert, tell me what I needed to do to make my son healthy, and then do it.

Cub sleeping during transport to St. Jude Children's Research Hospital, October 21, 2014.

Cub sleeping during transport to St. Jude Children’s Research Hospital, October 21, 2014.

When we drove across the bridge that turns Arkansas into Tennessee, I couldn’t see a thing in front of us. I could only see what we were leaving behind.

Once we arrived at St. Jude’s, we were led into the isolation area of the Leukemia Clinic that seemed so foreign, yet in the coming weeks would become a second home. Within minutes, we were quickly moved through a labyrinth of hallways, onto an elevator, and wheeling into what would become Cub’s room for 10 days.

In those first few hours, we were embraced with kindness by everyone from the cleaning lady, to the head nurse and a flurry of Specialists, Residents and Fellows who crowded into Cub’s room – each introducing themselves in turn, already working to develop a rapport with him.

One of the senior Fellows explained to me that he was sure the next day’s bone marrow test would show that Cub did indeed have Acute Lymphoblastic Leukemia, or ALL. He said that what they didn’t yet know was if it was T-Cell or B-Cell. He also said that Cub had the most common kind of childhood Leukemia — the one that, after 3 years of chemotherapy treatments, has the best cure rate: 90%.

90%? The doctor in Springfield had said 96%. No. We NEED that extra 6%.

I nodded my head and signed the necessary paperwork so that we could proceed immediately with whatever needed to be done first. Cub had another IV placed, in his arm this time, and the one in his ankle removed. Bags of fluids were dripping life-giving antibiotics and platelets into my pale little boy.

I ordered dinner for him while he watched The Lego Movie (again) and a nurse took my arm, offering to take me on a quick tour around the floor while another nurse was checking Cub’s vitals.

She showed me the little community room for the parents, which housed a washer and dryer, as well as a small bathroom and shower stall. Then she showed me the nourishment room 4 doors down where I could go to get Cub an apple juice or graham crackers to help settle his stomach in the middle of the night.

Then she asked if I had any other questions.

I struggled to keep my composure and said something like, “The only other real question I have is, how do I make sure he’s in that 90%? He has to be in that 90%.” My brown eyes, eager and pleading, stared into hers.

She put her hand on my shoulder and said, “He will be. He WILL. The cure rate is more than 90%. You’ll see. And right now, the best thing you can do is be strong for him because he’s going to be looking to you to know that he’s going to be okay.”

I nodded my head and said okay, not quite satisfied, but appreciative of her efforts.

A few minutes later, I stole a moment of privacy to call one of my friends.

“What do I do?” I whispered. “I can’t guarantee anything! I can’t make sure that he’s going to be okay! How do I do that for three years without knowing he’s going to be okay?”

I was panicked. In tears. And terrified.

My friend said something like, “He will be, Marilyn. He will be okay. And think of this. What do you want these three years to be like for him? And for you? Do you want to get to the end of these three years, and he’s fine, and they were filled with fear for nothing? What do you want to see when you look back? What do you want him to see?”

Boom.

The answer to her question wasn’t hard to find. It rushed to the surface of my heart like a diver racing for air.

I want Cub to see love. I want Cub to see joy. I want Cub to experience the power of peace. I want Cub to enjoy his childhood.

This meant I had to believe. Despite my fears. Despite my world-weary heart. Despite my own weaknesses.

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In that moment, I chose our future. I chose laughter, movie nights with popcorn and root beer floats, snuggles and blanket forts — moments that would inevitably be punctuated with chemo meds, injections, fevers, and random hospital stays. But. I chose my son’s childhood over my own fears.

If you’re facing such a choice in your own life, please remember that it is POSSIBLE to find joy in the midst of sorrow. It is POSSIBLE to redeem that which seems to have been lost. It is POSSIBLE to walk through the unthinkable with your child, and come out stronger, and even better.

Please know that you are not alone. We Cancer Mommies stick together. ❤