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CCAM Guest Blog: Luke’s Story

Published on September 3, 2018 in In the Community, Take Action

Guest Author: Leslie Phelps

‘Your son has an egg sized tumor on his brain’.

These are the words I heard on August 1, 2016, and these are the words no parent ever thinks they will hear. Seven days prior, my then 15-month old son, Luke, had woken in the morning and vomited. My husband and I thought he was just fighting a stomach bug. He played like usual the rest of the day and hadn’t lost his appetite.

This continued for four days before we took him to his pediatrician. She ran some tests, but they all came back okay. She asked us to check back in with her first thing Monday morning and let her know how the weekend went.

The vomiting continued and he started eating less. He was also lethargic and just wanted to cuddle. That Sunday afternoon, he lost the ability to sit up on his own. I thought he just didn’t feel well. Monday morning, our pediatrician advised us to head to Children’s Hospital Colorado’s ER for a brain scan. Within the hour we were looking at images of Luke’s brain and the tumor that had taken over.

Two days later, Luke underwent a seven-hour surgery to remove the tumor. However, because they tumors often infiltrate healthy brain tissue, the surgeons was only able to remove 90% of it. We spent the next three weeks in the hospital recovering, and then, just two days after we went home, we were back in the hospital for another surgery to have a port put in his chest where they would administer his forthcoming regimen of chemotherapy. A few more days and we were back yet again – this time so that doctors could harvest his stem cells. These were collected and frozen to use later during high-dose chemo when he would need them to recover.

Luke started chemo on August 31. He had 3 cycles, each included a week of treatment followed by two weeks of recovery. With each cycle of chemo, he got sicker and sicker – fevers, diarrhea, and lots of vomiting. We spent 10 to 14 days in the hospital each cycle while he recovered. Making matters worse, Luke also began experiencing hearing loss due to this toxic treatment. It broke my heart to know my baby might lose his hearing, but it was the only way to save his life. Thus, we grappelled with this…and then, ultimately, the loss of all of his hair, eyelashes, and eyebrows.

On October 26, 2016 when the first three cycles were complete, Luke had a brain and spine MRI which showed the tumor was almost completely gone, but the doctors wanted to move forward with three additional rounds of high-dose chemo to ensure they got every last cancer cell they could. They explained to us that this additional high-dose chemo would bring him to the brink of death and then they would rescue him with his stem cells.
On Halloween, he began high dose chemo. Luke lost so much weight and wasn’t eating due to nausea and sores ravaging his mouth, and thus would need a feeding tube to keep him sustained.

On December 26, Luke began his third and final round of high-dose chemotherapy and a stem cell transplant. On December 27, within 30 minutes of finishing the last dose, his temperature spiked and he needed oxygen. An X-ray showed the initial stages of pneumonia. He was admitted back into the hospital immediately. Instead of slowly getting better, like he had before, his health took a turn for the worse and he needed more and more oxygen everyday.

After two weeks, he required a CAT scan of his chest, and because he was so young, they had to fully anesthetize him. But after the scan he didn’t recover from the effects of the anesthesia on his fragile and compromised young body. He was moved immediately to the pediatric intensive care unit, or PICU. His health continued to spiral downward. He was put on a ventilator, which meant they had to sedate and paralyze him. One night his ventilator shifted ever so slightly, causing a complete lack of oxygen in one of his lungs. I’ll never forget the sound of the alarms on the machines, and the code blue being called on my baby.

I never thought I’d be so happy to be on the oncology floor.

I watched them resuscitate him for 10 minutes. Two days later, his lungs, heart, and eventually kidneys began to fail. We then learned his immune system was attacking his body. Doctors were now in the difficult and uncharted position of having to write and adjust his plan of care day by day. They told me our only possible hope was to give him a strong dose of steroids. I was told the steroids could kill him if he had an infection the doctors weren’t aware of, but if this were avoided, we might just save him. After much deliberation, discussion and angst, we went through with the plan to administer the steroids. A long, sleepless night later, it was clear we’d avoided the worse, and within a week, even, the ventilator was removed and Luke was out of the PICU and back up to the oncology floor. I never thought I’d be so happy to be on the oncology floor. After several more weeks of weaning his oxygen, we were finally sent home!

He was on oxygen at home for a month and several medications, as well. He had MRI’s on his brain and spine every three months for a year and they were all clean! He wears hearing aids and is finally walking really well. He still has a lot of balance issues and always will. He now has an MRI every six months and has been in remission for a year. We are beyond grateful for his life and the doctors and nurses who saved him.

We saw firsthand how pediatric brain tumors can destroy a child and his family. It wasn’t until it affected my own family that I learned how little money is dedicated to (pediatric) brain tumor research. It’s through organizations like National Brain Tumor Society, supported by people like each of you, that we’re able to advance research and public policy to improve and expand the availability of new and better treatments, and fund the discovery of a cure for brain tumors. I’m honored to be here with my son, my family, my #TeamLuke support network, and everyone of you. Thank you for joining the fight against brain tumors and for helping to raise the funds to beat it.

TAGGED WITH: childhood cancer, CCAM

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