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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Things I Learned My First Year as a Cancer Mommy

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Cub at age 5 — 4 days before diagnosis

 

Over the past year, I haven’t allowed myself to look back very often. When Cub was diagnosed with Acute Lymphoblastic Leukemia, I made a commitment to moving us forward, with our eyes on the prize of completing treatments and Cub once again being a healthy, happy little boy.

Today is the one year anniversary of his diagnosis, and in order to properly acknowledge the progress we’ve made, I’ve had to force myself to look back over what was inarguably the worst year of our lives.

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Cub doing some schoolwork while inpatient for a fever.

We experienced the emotional devastation of his initial diagnosis; being whisked away to Memphis for 6 1/2 weeks of Induction chemotherapy; a high fever that wouldn’t go away; being in isolation for 5 of those weeks; my baby losing his hair; watching him have numerous surgical procedures and enduring the pain of endless pokes and port accesses; my training to administer antibiotics through his port when we were alone in housing; the grocery bags of medication and supplies that I organized in the drawers of our housing dresser; having security deliver all our meals once we were placed in housing after 10 days in-patient because we were in isolation; Cub not getting to see or play with any other children; the exhaustion and loneliness;  and the weakness and incessant nausea caused by the medicines that were saving his life. The wonderful staff at St. Jude promised me it would get better, and it did. On December 8th — one day after my birthday — we found out he was in remission. It was time for him to move forward into the Consolidation chemo phase, and for us to go home.

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Cub and his bag of fluids, “Mr. Peabody.”

The Consolidation phase was tough — lots of nausea, new meds, and frequent 5-hour trips to Memphis where we would check into the Medicine Room of an evening to have Cub’s port accessed, labs drawn, and get a large bag of fluids attached. We decided to name our bag, as it would come with a portable monitor and shoulder strap. It would go back to the housing room with us, and it was quite heavy. Cub couldn’t lift it himself, so I carried it for him, and we went everywhere in tandem. We named his bags — alternating between Sherman and Mr. Peabody. He had to have the fluid in order to help his body properly flush the chemo treatments, and he would have to take a “rescue” drug afterwards in order to protect his organs from failing. He would always get nauseated on the windy Arkansas roads we took to get back home, but he never complained.

A few months — and several floor mats — later, we completed Consolidation, and Cub graduated to the final phase of chemo: Maintenance. I foolishly thought that this would be 120 weeks worth of a downhill slide. We would be going to Memphis less frequently, and get 3 out of 4 of Cub’s weekly chemo infusions at our local affiliate. Several weeks into Maintenance, Cub was scheduled for what’s called Reinduction — where his body is revisited by the early chemos of Induction. He was to have two reinductions. But, Cub had a rare side effect from a med called L-Asparaginase (we call it “asparagus”), and it caused him to have a stroke. Did you know 6-year olds could have a stroke?

That was the most terrifying experience of my life. The L-asparaginase can make the blood have more of a tendency to clot, or it can make the blood have more of a tendency to not clot. In Cub’s little body, it increased the tendency for BOTH. Cub developed an inoperable clot in his brain AND bleeding from blood vessels in his brain, but through God’s grace and the wisdom and experience of some very talented medical teams, he survived with no cognitive damage and minimal physical issues from which they expect him to fully recover. And, because he is considered low risk, his primary St. Jude physician was able to cancel the second reinduction, so Cub never has to take L-Asparaginase again.

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Cub enjoying an ice cream at St. Jude’s after an inpatient procedure.

Today, one year after diagnosis, we are 40 weeks into the last phase of chemo, with 80 weeks left. Cub has on average 2 physical therapy treatments per week, 2 occupational therapy treatments per week, one clinic appointment per week where he has labs drawn and receives a chemo infusion. He takes anywhere from 15-30 doses of medicine per day, depending on his treatment plan for the week, including 2 blood thinner injections that he will be taking until the brain clot is gone. We go to St. Jude once a  month for a spinal procedure wherein he is put to sleep and chemo is injected into his spinal fluid so it can wash his brain to prevent leukemia cells from developing there. In a few months, these trips will go down to once every 16 weeks or so.

This last year hasn’t been horrible, or lost time. It’s just been hard, and this Cancer Mommy has learned a lot about life, love, and motherhood. One day, this will all be behind us — everything but the lessons we’ve learned along the way.

Here are just a few of the many sweet lessons that swirl in my heart everyday. I picked six because Cub is six 🙂

  • I have survived the realization of some of my very worst fears, and come out stronger, braver, and yes — even happier. There is joy to be found in every circumstance — seek it out, embrace it, and let it empower you.
  • Every day, I sit in awe of my little boy — he has endured more in the past year than most of us will in a lifetime, yet he remains compassionate, creative, humorous, loving and joyful. Circumstances don’t define you – you define them.
  • Not everyone is able to walk this journey with us — it might be too much emotionally, or they have other things going on, etc. But, we have been embraced by SO MANY people who love us, walk beside us, send us encouragement and lift us up in prayer. Our darkest days inspire others to shine and share their light.
  • Life radically changed for us one year ago today, and at some point early on, I had to accept that. My work, my plans, my time and expectations are all now dictated by a medical protocol and all the unexpected things that accompany it. Be honest with yourself about what you can and cannot do – recognize your limitations, but don’t sell yourself short. Accept your reality and do your best with what you have every day.
  • We are traveling a long road to healing. Sometimes it’s exhausting. The Cancer Mommy can’t afford to get sick and run down. I’ve learned that even five or ten minutes of self care make a real difference in my personal well-being. Take a walk, get your favorite drink and sit on the porch, read a few pages of a book or magazine, or go lay on your bed with the timer set for 5 minutes. You have to take care of yourself in order to take care of those you love.
  • When our child is facing a life-threatening illness, our instinct is to dig in and sit vigil over them — to prepare for battle with all the focus and force of a mother protecting her young. And this is a good thing. But, we have to remember that he or she is a child, and this war is set against the backdrop of their childhood. Don’t let cancer take your son or daughter’s childhood — make an effort to let them experience the magic and wonder inherent to their little beings.