What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer
I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan. Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise. Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.
For us, it started out like any other Saturday morning. Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary. Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old. By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us. Naïve, I know.
Within a few weeks, the swelling was so bad that they had to put in a VP shunt. Within about a month, they removed the shunt as it had caused massive infection. He was now experiencing Grand Mal seizures, loss of memory and functionality. Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues. Basically, everything that could go wrong did go wrong. He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life. After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!
With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there. I was, of course, devastated and proud all at the same time. There were many struggles during the 18 months he was there. He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required. The first was to remove the infected brain plate and start him on aggressive antibiotics. Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist. It was stage 4 and angry. The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills. We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic. But to no avail.
Just days after his 24th birthday, we were told there was nothing more they could do. Matty wanted to go home and party with his family and friends and that is just what we did. For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime. Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.
Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.
During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that. He always thanked everyone for their assistance and never lost his patience, despite severe pain at times. He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh. Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management. His last effort to help others was to donate his body to science. It was his hope that somehow he just might help find a cure so others would not have to endure what he did.
My wish is for everyone to enjoy today, whatever it brings, and make the most of it. My son is gone in body, but he lives on in our hearts and our memories. I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place. Matthew is my hero, and I just hope that I can make him as proud of me as I am of him! Live, Laugh, Love