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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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. ❤

The Beginning of our Cancer Journey

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Most of us start our day with the idea that it’ll be routine. Most of us don’t expect a cataclysmic, life-altering, devastating event, unless maybe it’s Monday.

October 20, 2014 was a Monday.

I started the day as I do most Mondays – in a rush for work. I kissed my son goodbye (it was his last day of fall break), scrambled to find my keys, and forgot my lunch. Like I said, routine.

Later that morning, I called the pediatrician’s office to schedule a follow up. Cub, my 5 (almost 6) year old son, had just finished a course of antibiotics for pneumonia, and the doctor had thought he heard a heart murmur. Hence, the follow up.

Receptionist: “Oh, it looks like we have an opening at 1:45. Will that work for you?”

Me: “That’s perfect!”

Off work early on a Monday, spending the afternoon with my little boy – a nice break from the mundane.

We didn’t have to wait long to see the doctor – just long enough for Cub to enjoy the fish tank. The doctor said Cub’s lungs sounded clear, and there was no hint of a heart murmur. It must have been caused by the pneumonia and had faded away.

The doctor and I shared a bit of small talk as he typed in the computer.

Me: “So, last Friday at parent/teacher conference, Cub’s teacher mentioned that she and some of the ladies at the school thought that Cub was looking a little more pale than usual. What do you think of that?”

Doctor: “Hmmm…well, let’s see.”

He proceeded to examine Cub’s eyes, palpate his neck and stomach, and look at the palms of his hands.

Doctor: “You know, he does look a bit pale, but the whites of his eyes don’t look yellow, so I don’t think he’s jaundiced. Let’s just do a blood test and check it out.”

We walked down to the lab where they did a finger stick, and we were told to go on home. They’d have the results later that afternoon and would give me a call.

Fifteen minutes later, Cub and I were in the Sonic drive-through. I was buying him a slush – green apple – for being good at the appointment, when the doctor’s office called.

Receptionist: “Mrs. Robertson? Are you still in town? We’d like you to come back to the office. There was something in Cub’s lab work, and the doctor wants to do more tests.”

It wasn’t what she said that made my heart beat faster. It was how she said it – something in her tone. A depth of compassion that felt out of place.

I told her we’d turn around and be back in fifteen minutes. I called my husband and told him to meet us there. I willed the ice that was snaking through my veins to back off and focused on my breathing while stealing glimpses of my son in the rearview mirror. He slurped his green slush and played with his straw – oblivious to the fear building in my heart. I tried to soak him in – to surround his little self with all of my mother’s love, to protect him from something for which I didn’t yet have a name.

Thirty minutes later, Cub was being admitted to the hospital for further testing. His pediatrician had told me that Cub’s counts were exceptionally low – so low, in fact, that if an adult had those numbers, he wouldn’t be able to get out of bed. The doctor was kind, politely hedging around the elephant in the room. But, because of my mom’s recent battle with leukemia, all the terms rang familiar. Too, too familiar.

I stepped up close to the doctor, and asked, “Do you think it’s leukemia?” He said, “With his counts, that would be a very real concern.”

The next few hours felt like a dream sequence. A part of me holding onto the vague possibility of a virus, but nothing could push away the very real probability of a cancer diagnosis.

I was able to make a few phone calls. I helped the nurses hold down my son while they put an IV in his ankle. I tried to explain why we couldn’t go home just yet. I smiled and ordered him macaroni and cheese from the cafeteria.

Around 10pm that night, the hematologist took me and my husband to an empty room where she had set up three chairs. A very gracious woman, she explained some of the tests they had done, and a little bit about the functions of various blood cells. Then she told us she believed Cub has Leukemia.

I heard her words, delivered with compassion and professionalism, though I tried desperately to reason against what my heart already knew to be true.

Childhood Leukemia. Probably ALL (Acute Lymphoblastic Leukemia). Over a 90% survival rate. It’s the most common childhood cancer, and he has good odds.

Good odds. Good odds? I hate that term. It makes me feel like I’m betting on a horse.

I wish I could say that I was that person who knew from the very beginning that everything would be alright. That I knew God would heal him. That we had nothing to fear. But, no. I wasn’t, and I’m not.

No. In those first few heaving moments, my raw, primal terror was louder than my faith. I have lived enough to know that we don’t always win. Win. How could I guarantee that 90% win? My mother’s heart went into an adrenalin-fueled panic. Cub has to be in that 90%.

My husband and I sobbed while the doctor sat and held our hands. We sobbed while she prayed over us and our son. We sobbed while she waited for us to catch our breath.

Then, we talked. “We will have to transfer him tomorrow. You have three options for where to start treatment. Barnes, Kansas City, or St. Jude. We are a St. Jude affiliate, so if you go there, you can do some of your treatment here. But, the choice is yours. I’m not trying to sway you one way or another.”

I looked at her, putting my hand on her knee. “If this was your son, where would he be tomorrow?”

She smiled. “There’s no doubt – St. Jude.”

I sat up, shared a knowing look with my husband and nodded my head. “Then Cub is going to St. Jude’s.”

I waited until Cub fell asleep to run home and pack a bag. It was midnight, and I had no idea how to pack.

My oldest brother drove an hour and a half in the wee hours of the morning to spend the last few hours with us before the ambulance took us to Memphis. When I called him to tell him, the words barely came. Leukemia. Saying the word in relation to my son was like rolling rocks around in my mouth. Awkward. Foreign. Painful.

After a nearly 5 hour, non-stop ambulance ride, we arrived in Memphis around noon. I never saw the outside of the hospital as I was riding in back with Cub, but once I stepped from the ambulance into the breezeway, I was swarmed with kindness.

We were quickly moved from a holding room to Cub’s room on the pediatric leukemia ward. That first day was a blur of doctors, nurses, social workers, a chaplain, child-life specialists, a dietician, and many, many tests. Who knew a little five year old boy could be so brave?

At some point later that evening, one of the nurses lovingly kicked me out. “Go get some coffee,” she said.

I wandered around a bit, unusually disoriented from having no points of reference. I foraged something to drink and some peanut butter crackers that I ended up not eating. I went into the little parent’s room adjacent to Cub’s room, where my little bag was sitting on a pull out bed that I ended up never using. I realized that I hadn’t brushed my hair since sometime yesterday afternoon, and I had probably better set myself to rights. I grabbed my makeup bag and headed into the bathroom.

There was no mirror. None.

At first I was confused. Was it hidden somewhere? On the back of the door, perhaps? Nope.

Then, I was a little agitated.

Then, I was grateful.

I didn’t see what I expected to see. I couldn’t see the bedraggled, exhausted mother spent from her own desperation. I couldn’t see the traces of mascara that my tears had left behind or the little-girl-lost expression in my brown eyes rimmed with red.

Instead, I could see what I wanted to see. I could see what I wanted Cub to see. And, I realized while standing there in front of a blank wall, that this situation does not have to define us. Cub and I don’t have to fall into any preconceived ideas of what a mother and son “doing cancer” are supposed to be like. I didn’t have to be the mom I expected to see. I could be the mom I wanted to be.

So, I blindly combed my hair and tucked it into a clip. I washed my face, put some Burt’s Bees on my lips, and threw on a smile for Cub. I decided I get to be the mommy I want to be, and the mommy Cub deserves, not the mommy cancer says I have to be.

We’re doing this together, and Cub gets his mommy every. step. of. the. way. Not some washed out, hollowed reflection of her. He needs all of her, and that’s what he’s going to get.

I couldn’t help but wonder if someone knew what we mothers would think on our first night, standing in front of a mirror. And, maybe that’s why there wasn’t one on that bathroom wall.

5 Ways to Bring Peace to “‘Roid Rage”

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“Mommy, I don’t like that medicine – it’s mean to me. It makes me feel angry when I’m not really angry!”

That’s what my 6-year old son said to me on the last day of his first round of DEX (Dexamethason), a high-powered steroid that also happens to be really great at fighting leukemia.

If your child has been on DEX, then you are well aware of its effects on his or her emotions – the stellar meltdowns over seemingly small things, the quivering lips and curled up little fists shaking with anger, the darling pixie eyes glazed over with a foreign rage that goes as inexplicably as it comes.

When these ‘roid rages hit, you may feel overwhelmed and at a loss for how to handle your child. Do you discipline her? Do you ignore his behavior? Do you give in?

‘Roid Rages are difficult to deal with, and sometimes emotionally draining and painful. But, I want to encourage you. This time is temporary, and as hard as it is, try to remember that you and your child are on the road to recovery and healing! This too, shall pass, and, in time, DEX will be a distant memory. We just have to honor ourselves and our children by making the best of a hard situation.

So, after much real life trial and error, I’ve put together 5 ideas to try the next time your child is on DEX, and his emotions are trying to get the best of him (and you!)

1. Talk about DEX with your child. Explain that this medicine might make him feel upset, but that it is important to take it because it helps the leukemia go/stay away. Let him know that you will understand if he gets upset, and that you will help him. You’ll get through it together.

2. Plan ahead as much as possible to avoid overstimulation or changes in routines. Even under normal circumstances children tend to have trouble controlling themselves when overstimulated or if there are major changes to their routines. When you know your child is going to be on a course of DEX, try to keep life as simple and familiar as possible for them.

3. Designate a Cool Down place. It might be their bedroom with the curtains drawn, or a beanbag and blanket in the corner of the living room, but a safe, calming area for your child could be very helpful in keeping their ‘roid rage from escalating, and can help bring peace more quickly.

4. Let your child vent his anger in a safe and healthy way. You cannot reason your child out of a chemically induced rage. As long as they are safe, if they need to yell a little or throw a pillow, let them.

5. Take a breath, step back, and look at the big picture. Remember, a meltdown just lasts a few minutes, but healing lasts a lifetime. It’s true that this journey isn’t an easy one, but you’re not traveling it alone. And, in the end, all that really matters is that your child is well. This too shall pass.