And an Incredibly Caring Staff Helped Us Recover

Written by Sarah Collette, Magnus’ Mom

Our ordeal started when my youngest of five children started having some tummy problems the summer before last. After Magnus vomited nearly every morning for a week straight, I just had that “mom feeling” that something wasn’t right. I called our pediatrician and after relaying some of his symptoms, she told us to go straight to Primary Children’s Emergency Room. She told us not to wait, and to get there as quickly as possible.

As a pretty easy-going parent, I initially shrugged off the possibility that there was something really wrong. But, in hindsight, I think deep down I knew. I think I was just trying to protect myself from what I was afraid was about to happen. My husband and I woke Magnus up, packed him into the car, and drove to the ER that warm summer evening. From the moment we walked into Primary Children’s, I immediately felt at ease and knew we would be taken care of.

A Devastating Discovery

We were taken back pretty quickly and I immediately loved how the medical staff interacted with my son. They were all so attentive and complimentary. As a non-shy 3 year old, Magnus ate up the attention. They were so fast and after a quick exam and some medical background for our visit, they immediately got us into a CT scan. We went back to our room and about 10 minutes later Dr. Casey came in with a grave look on his face. He brought a stool over to my husband and I and set it right in front of us. He said, “I am so sorry to tell you this, but your son has a very large mass in his brain.”

I remember being able to literally feel the color drain from my face. Tears sprang to my eyes and I sort of fell over into my husband’s chest. I looked up at him and he was crying as well. He squeezed me tight and Dr. Casey said, “I am so sorry.” Of course, Magnus was just over on the bed, watching his favorite movie, as happy as could be. Dr. Casey brought us over to the computer to show us his scans and explain a little bit about what we were dealing with. He told us that they had already called the neurosurgery team and that they would be there to speak with us shortly. He left us alone and the nurse came back in to start him on steroids for inflammation as well as an IV.

The one thing that made it all easier for us was how kind everyone was. I knew that all they wanted was to help our son. Magnus was immediately transferred to the PICU for observation until he would be intubated for an extensive MRI and eventual surgery the next morning. It was like a movie when we got up to the PICU. We walked into Magnus’ room which was full of doctors and nurses. They all gave us reassuring smiles and nods. My husband and I probably looked like zombies at this point. Listening to our ER nurse relay Magnus’ chart and history to them was terrifying. Was this really happening to my little 3 year-old baby?

After getting settled in our room, Magnus was able to sleep for a few hours. Then they came to get him for his intubation and MRI. He was gone for a few hours and after he got back we got him prepped for surgery. I absolutely loved our PICU nurse. He let me help bathe Magnus and afterwards he encouraged me to get into bed with Magnus and snuggle up tight. No matter that there were a million wires and cords everywhere, he helped me wrap my arms around my baby.

Surgery and Waiting

A little while later the neurosurgeon, Dr. Brockmeyer, came in to talk to us. The things he told me terrified me. The risks associated with this surgery made me want to pack up my child and leave that minute. But I knew I had to place my trust in this man that would save my son’s life. As they took him away after we said our goodbyes, I cried and we waited. And waited. We waited all day long—for 8 hours—until Dr. Brockmeyer finally came out to tell us that he felt the surgery was successful and if the MRI showed otherwise, he was willing to go back in and make sure it was a success. I loved him for that.

Over the next couple weeks Magnus recovered. We found out that he did end up with some of the side effects we had been warned about. He had right-sided weakness. He had eating and swallowing problems. He couldn’t even walk on his own. He had an external ventricular drain (EVD) coming out of his head with cerebrospinal fluid (CSF) draining out of it. He was sad. We were sad. But he was slowly and surely recovering. He had amazing physical therapists, including Lisa, our favorite. He had great speech therapists and wonderful nurses and fabulous patient technicians. We loved each and every one of the staff that helped take care of our son. We will never forget them.

From Bad to Worse

Dr. Bruggers, the pediatric oncologist came in to our room one morning to tell us that they had received the pathology report back. The results were in. Cancer. Ependymoma, a rare brain tumor to be specific. We were devastated once again, although I felt like I should have seen it coming. We were given so much information on what to expect when treatment started. We would beat this thing. I knew it.

There came a point where Magnus could no longer tolerate his EVD and he needed another surgery to perform a procedure called an ETV that would put a permanent drain in his brain for CSF. He would also get a lumbar puncture to check for traveling cancer cells, as well as have a PICC line placed for treatments. The surgery was a success and Magnus was able to have his EVD pulled and his head stitched up. With that, we were finally able to go home.

Radiation & Recovery

The real work was only just beginning, though. We went to radiation treatments every morning for 7 weeks straight. We went to see Dr. Bruggers in the cancer clinic once a week. Still, everyone was so kind and made everything so much easier. Magnus also needed a lot of therapy, so we went to the Primary Children’s outpatient rehab in Taylorsville 3 times a week for speech therapy, physical therapy, and occupational therapy. His therapists were amazing. They helped to bring my little boy back. Magnus improved in leaps and bounds. He began to regain everything he had lost from the surgery.

By January, 4 months after his surgery, he was discharged from all of his therapies. He finished radiation treatments in November and was deemed cancer free in December. We could not have been happier. He was able to start preschool (only 6 months late) in March. He started soccer and loved playing with his friends.

We still go to Primary Children’s every 3-4 months for scans to make sure the cancer hasn’t come back. The worst part of all of it is getting “poked” as Magnus calls it. He sure doesn’t like the IV. Days like those are when I actually miss his PICC line. But life has mostly returned to normal. I don’t think about cancer every day like I used to. It crosses my mind when I see his permanently thinned hair from radiation treatments, or when I get a glimpse of the 7 inch long scar on the back of his head. But our family has healed and we are looking to the future. We are hopeful that it is bright and cancer free.

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