Mother of a survivor

On August 1, 2016 I heard the words no parent ever wants to hear. “Your son has an egg sized tumor in his brain”. 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 when 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. Sunday afternoon he lost the ability to sit up on his own. I thought he just didn’t feel well. Monday morning our pediatrician called and advised us to head to Children’s Hospital’s ER for a head CT scan.  Within the hour we were looking at images of Luke’s brain and the tumor that had taken over.

On August 3, Luke underwent a 7 hour surgery to resect the tumor. They were able to remove 90% of the tumor. We spent the next three weeks in the hospital recovering. Two days after we went home, he went back to the hospital for surgery to have a port put in his chest. A few days after that he was back to  harvest his stem cells. These were collected and frozen to use later during high dose chemo when he would need them to survive.
He started chemo on August 31. He had 3 cycles of chemo (each cycle included a week of chemo followed by two weeks recovery).  With each cycle of chemo, he got sicker and sicker with fevers, diarrhea, and lots of vomiting. We spent ten to fourteen days in the hospital each cycle while he recovered. He also began showing hearing loss after the first round. They continued to monitor this, but we were willing to have a deaf child if it meant saving his life. He lost all of his hair, eyelashes, and eyebrows.

On October 26, when the first three cycles were complete, he had a brain and spine MRI which showed the tumor was almost completely gone, but the doctors wanted to move forward with 3 rounds of high dose chemo to ensure they got every last cancer cell. They explained to us that high dose chemo was meant to basically bring him to the brink of death and then they would rescue him with his stem cells.

On Halloween, he began high dose chemo. He eventually needed a feeding tube because he had lost too much weight and wasn’t eating due to nausea and mouth sores.

On December 26, Luke began his third and final round of high dose chemotherapy and stem cell transplant. On December 27, within 30 minutes of finishing the last dose, he spiked a fever and needed oxygen. An X-ray showed the beginning stages of pneumonia. He was admitted immediately. Instead of slowly getting better, his health began to decline. He needed more and more oxygen every day.

After two weeks, he went in for a CT of his chest, but was unable to recover from the anesthesia. He was moved immediately to the 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. They resuscitated him for 10 minutes before they were able to stabilize him. Two days later, his lungs, heart, and eventually kidneys began to fail.  Ultimately, his immune system was attacking his body.
Patients who receive their own harvested stem cells do not have these kinds of reactions so they were writing his plan of care day by day. Their only hope was to give him a super strong cycle of steroids. They were hesitant because if he did have an unknown infection, the steroids could eventually kill him.

If he didn’t, then the steroids would make a difference in his recovery. After much deliberation and discussion, they went through with the steroids. He never did have an infection and within a week the ventilator was out and we were out of the PICU and back up to 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 their family. Luke has two older siblings who lived with their aunt and uncle for the 8 months we were in and out of the hospital.  With so little money given to pediatric brain tumor research, we need to do something! I am honored to walk this year for #teamluke and all the other kids and adults affected by brain tumors. If you would like to see Luke’s journey in full detail, I welcome you to follow his Face Book page Help Luke Beat Brain Cancer.

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.