It started with a phone call from the school nurse, saying my son had fallen down while running in gym class. At age 13, I assumed that could be any number of things: growing feet, lack of water, the heat. Thinking nothing of it, my son continued to complain of intermittent issues – weird whooshing sounds in his ears, random projectile vomiting, and earaches. All of these are common things when a teenager goes back to school and begins picking up bugs. Normally very clean and particular, I noticed he began spilling food and leaving it, not caring. He would be completely oblivious to food on his face, and when I pointed it out, he seemed uncaring. There was more tripping and falling, and again, nothing abnormal for a growing teen.
Finally, annoyed with all, I took him to the family doctor to check his ears. She did the usual checkup, but I noticed a look of concern on her face. She said she wanted to order an MRI, just to make sure. Understanding the cost, I was hesitant, and when I received the phone call just a day later, I tried to talk them out of it. However, it was scheduled, and it was not my call, so reluctantly we went.
Halfway into the MRI, the technician came and informed me they would be injecting him with something so they could see more clearly. He had a strange look on his face. The MRI was completed, and we went to the waiting room to wait for the next test, a thyroid test. All of his symptoms led me to believe this was the beginning stage of a disease common in his family history. We were then called in to the next office, and the nurse had difficulty finding out what test to take. She called the family doctor and hung up slowly after the conversation. Looking at me confused, she said my son had been admitted to the hospital, and we were to go as soon as possible. She asked us to please go wait in the waiting room for further instructions. The phone call was received, and I was told my son had a brain tumor. He needed to go to the hospital for brain surgery ,and he would have some sort of device inserted from his brain to his stomach (what I later learned is a shunt, which helps drain additional fluid out of the brain so that it does not create too much pressure, known as hydrocephalus). In complete shock, I broke down sobbing in the waiting room, where several other patients (most likely in varying stages of cancer) stared at me with sympathy, understanding that we were now entering their world.
My son, oblivious, walked out the doors with me, making me stop to look at the beautiful water fountain with his large spacey eyes. We walked into the parking lot, and having no clue how to tell my son the news, I blurted out, “You will not be going back to school today. We have to take you to the hospital for brain surgery”. He hugged me tightly, two sobs shook his body, and he went right back to normal. We started off toward the hospital, and then I realized we probably needed to come home and get some things first. He asked for a shake, and we stopped and got him one.
I don’t recall much of getting checked in. I recall sobbing uncontrollably, while my son sat on the bed, as calm as could be, as we waited hours for the surgeon to explain the situation. Interns and nurses came in to do various prepping and stopped to play video games. The surgeon finally arrived and showed me two masses in my son’s brain. They could not operate on the tumor, as it was a risky area being on the brainstem. He also showed me a normal brain, and my son’s brain which was full of fluid accumulated because the tumor was blocking the normal flow. The surgery to create a new pathway within my son’s brain would be done rather than inserting a shunt. The remaining few days was a blur. Seeing my son with a tube stuck in his brain from outside his head and connected to various machines was a mother’s worst nightmare. No ability to sleep as I lingered on every machine’s beeping, or slowing of beeps…or stopping. Those were the worst, when teams of surgeons and nurses came rushing in to check that everything was okay. Finally, the removal of the tube from his brain indicated the end of the emergency. While testing my son’s ability to walk on his own, he leaned on me as we walked down the long hallway. I cried, as the reliance of leaning on me to walk at the age of 13 brought back memories of similar happy events when he was learning to walk in his younger years. We were released, and he healed (physically) back to almost normal within a couple weeks.
What I wish I knew before diagnosis:
Later I wished I would have recognized the deep, strange feeling I now know was my sixth sense telling me something was wrong. I wish I would have known the symptoms, when combined, were premonitions of something very serious. I wish I would have taken my son’s complaints more seriously.
Guilt: These are similar feelings of every parent, which can turn into guilt. I wish I knew before diagnosis that there is no way I could have known, and that while guilt is a natural response, it is something that needs dealt with in a healthy manner as soon as possible.
Being your child’s advocate: I wish I would have known afterward that rather than waiting on the hospital staff to call me, I would need to manage this ‘project’ myself. With appointments crossing various hospitals, HIPAA laws and communication between locations is limited. I would need to document the appointments and results, keep copies, and ensure the next doctor had that information.
Take care of yourself: This can be challenging as a sole caregiver. And if you are as stubborn as I am, you will think that you can do it all without help. You must lose this mentality and let others help.
Notice a majority of ‘what I wish I knew’ is all about me? My son and his diagnosis are in God’s hands. I cannot control it, although advocating, being aware, and demanding great care is a part of my role. This is exactly why you need to take care of you – mentally and physically. Without strength in those areas, you cannot be a healthy caregiver. So if you are a caregiver, reach out to others so you can have time to strengthen yourself.
What can you do to support:
If you know a caregiver and they are as stubborn as I am – don’t ask if they need help, because they do. Bring them dinner; tell them you are stopping by for a couple hours so they can get out of the house, help them sort through the piles of medical bills and make the calls needed to coordinate payments. If you ask, they will likely decline, so make a plan and just do it.
As much as you are able, support brain tumor awareness and research by donating to one of the many great foundations. My personal loyalty lies with the Dragon Master Foundation and the National Brain Tumor Society because they are doing great things. There are many others as well. Research is extremely underfunded for brain tumors so every little bit helps. Look for events in your community that support brain tumor research.