“My son was a freshman in college in April 2016 and had just been home for spring break three weeks prior to the diagnosis. He seemed perfectly fine with no symptoms. Two weeks later, he sent me a text saying “I’m having trouble sleeping.” He said that whenever he laid on his left side, he became extremely dizzy and would have to sit up. I asked if he had any other symptoms and he said no. He had a cold/cough the week before, so I said it must be an ear infection. Easy, right? I told him to go to the campus doctor to get checked and get antibiotics for his obvious ear infection. He said he didn’t have time. A couple days later I checked back in on him and he said he was still experiencing this but it “wasn’t so bad and that he would go to the doctor if it got worse.” A week after the initial text, he told me he woke up vomiting. That’s when I urged him to go to the doctor. The campus doctor said he appeared fine physically and sent him home with an anti-nausea medication and told him to come back in the morning to let her know if it helped or not. She said if it didn’t, she would like to order a CT scan. I went with him the next day for the CT scan as he was nervous. We waited two hours for the results. I can vividly remember the doctor coming in the room, eyes wide open, ears red, and voice shaking. “There is a mass on your brain.” I sobbed. Being told your child has cancer is an indescribable pain. Our lives were forever changed in that moment. Two days later, at the hospital to meet with a brain surgeon and get an MRI, my son became violently ill. The surgeon feared the tumor was growing rapidly and placed him in the ICU and was able to get his vomiting to stop. He had emergency surgery the next morning and they successfully removed 98-99% of the tumor. It was confirmed cancerous, Medulloblastoma.”
” His treatment plan consisted of six weeks of radiation along with Vincristine, then nine rounds over the course of a year of inpatient chemotherapy where he received Vincristine, Cisplatin, Lumostine, and Cyclophosphamide. What helped him physically during chemo was staying on top of his anti-nausea medications. Around the clock, he was given multiple different medications: benadryl, atavin, kytril, a patch behind his ear (scopolamine patch), steroids, emend, etc. It was a full time job for me to keep on top of this in order to keep him from vomiting. However, mentally he was struggling. He was an active nineteen year old with his whole life just beginning and suddenly, this. He was stuck at home or in the hospital while all of his peers were living life. He was extremely scared and anxious on how his body would handle the chemo and fearful of the tumor returning. We were able to address this with a psychiatrist trained on treating young adults going thru cancer and placed him on a medication (Remeron) that helped him tremendously during treatment.”
“What helped me as a parent was, I joined a Facebook page called “Parents of kids with Medulloblastoma” and immediately began looking for the survivor stories. The success stories. I needed to feel hope and be encouraged. I started talking to other cancer moms. We all have the same fears. We just want our kids to survive, to be happy, and to live life. We joined a local group called “A Special Wish” Not only do they grant kids a “big wish” but they also give “sparkles of joy” throughout your journey. They sent us out to dinner, basketball games, football games, special events, anything to provide some joy during the most difficult time of your life. We celebrated everything, big or small. I made sure that the weekend before an inpatient stay, we would do something fun. Either a nice dinner or an outing. Because we never knew what the next round would do to him and we knew his counts would crash and he wouldn’t be allowed in public for a while.”
“My advice for other parents is to do your research, become an expert on your child’s cancer. Take notes, keep a journal. I had a list of questions for the oncologist almost every visit. Become an advocate for your child. I relied heavily on a pocket calendar to keep track of all the appointments, as there will be many. Take whatever help you can get in the beginning as far as meals, errands, babysitting your other kids, etc. You will be completely overwhelmed and so focused on your cancer child and any help is greatly appreciated. Keep a bag packed for those unexpected hospital admissions. We also started bringing our own pillows/blankets for admissions to feel some comfort from home. Reach out to other parents going thru the same. Nobody else will understand you like they will. Take lots and lots of pictures to look back at once treatment is over so you can remind yourself how far you’ve all come. I now volunteer for “A Special Wish”, as it was important for me to give back, and especially to help other parents in the trenches of cancer.”
Stacy Slovett, Dylan’s mother.