“Gabe was a perfectly healthy boy. He’d reached all his milestones as a child. He talked early. He walked early. He never got sick except for colds. He did baseball and swimming and kickboxing. Then two years ago he began to have a ‘pins and needles’ feeling in his mouth. Then it grew numb and he had trouble talking. One day the teacher had him read out loud in class and he drooled all over the paper. So I raised a flag with the pediatrician. He thought it was just an allergy, but sent us to a neurologist just in case. The neurologist thought it was just a ‘tick’ and part of a growing phase. But he did an MRI just in case. When the results came in, he asked Gabe to wait outside the room. That’s when I became scared out of my mind. It was the worst possible news. The doctor said it was a tumor the size of a big olive. In the brain.”
“I didn’t tell my husband right away. I just told him to come meet me at the park, and that’s where I told him. The whole time Gabe was playing nearby. My husband took it very hard. He started crying. He had a panic attack. Our lives had not been easy. It was very difficult for us in Albania. My husband grew up without a father. We decided to come to America alone as teenagers. Neither of us spoke any English. We had no family here. It was very lonely. We came from nothing. We worked very hard and we went to school at night and we taught ourselves English. My husband got a job as a steam worker and I got a job in marketing. We bought a beautiful, sunny one-bedroom apartment. We had recently paid off the mortgage. We could even afford to send Gabe to private school. It felt like we were evolving. We felt like we had finally made it past the hard times. Then the rug was pulled out from under us and everything crumbled. And I didn’t know what to pick up first. Do I comfort my son, who’s about to go through the worst journey of his life? Or my husband? Or myself?”
“The doctors gave us peace of mind. They seemed so sure of their profession. They were using all these medical terms and speaking to each other so calmly. They spoke about the tumor like it was a simple puzzle. We tried to explain the surgery to Gabe as if it was a cartoon. He loved cartoons. We told him that there was a black hole that was sucking all the good energy out of his brain. We told him that he was going to be cut a little bit, but we did not tell him how much. I told him that he may have difficulty speaking when he wakes up, but don’t worry, because we’re going to write to Mommy on a notepad. But I’m thinking inside that I’m never going to hear my son speak again. During the surgery, my husband and I just walked around aimlessly for hours and cried. Finally they called and told us they were finished. We went in to see Gabe and he’s speaking words. He’s speaking regular words. My husband is so excited that he’s taking a video. But I’m looking at Gabe and he’s in a fetal position on the table. And I remember thinking that the way he was lying there, he looked like he did when he was born. It was just a bigger version of baby Gabriel. He had been such a healthy, beautiful baby boy. And here he is again. And he’s not well.”
“After the surgery, we thought it was over. We think it’s done. Gabriel is getting better and it’s like nothing happened. His teachers can’t believe it! We’re even planning on going to the beach. But the doctors tell us that they can’t identify the tumor. The surgery was in July. August passes. September passes. Now that the tumor was gone, we were anxious to start treating the cancer, but nobody knows where to start. Every hospital is saying something different. Then finally two hospitals gave the same opinion: Descmoplastic Small Round Blue Cell Tumor. Nobody had ever seen this tumor in the brain before. They told me not to read about it. They told me that every case was different and not to read about it. When you read about it, it’s very bad. Oh my God. This cancer always comes back. And when it comes back, it’s worse. ‘Less than three years,’ it says. Oh my God. What did I do? What did I expose him to? What did I feed him? The chemo is so painful for him. My family tried to talk me out of it. They told me that I’m killing my son with my own hands. But what can I do? There’s nothing I can do. I want to give blood. I want to give bone marrow. But all I can do is watch. It’s the worst show you can imagine, but you have to watch. You’re forced to watch.”
“My biggest challenge? Two words for you: third grade. It’s kind of like second grade but harder. I was a very special student in second grade because I had a brain tumor. A very rare one, actually. I was the only one in the world with this type of brain tumor. Everyone who knew me was shocked! Their heads blew up! I’ve been through a lot of things this past year. But I can tell you, if youget brain cancer, try not to worry! It will be very hard and you will get lots of fevers but you have to be brave. You have to be brave like me because I’m very brave about this thing. And if you don’t know how to be brave, I can teach you. I know the surgery seems scary, but I have four words for you: you’ll be on anesthetics. When you wake up, your head will be wrapped like a mummy and your mom will take a picture and show you. When it’s time to get shots, do a countdown from thirty and tell yourself: ‘Calm down, calm down, calm down.’ Then whenever you’re ready, tell the nurse to go. And if you need more time, ask for more time!”
“If your child has brain cancer, I can give you some advice. First I would say to you: Oh my gosh! Your child has brain cancer. I’m so sorry that happened to you. I’m sure you’re feeling very sad, but don’t be worried because my mom was sad too. I actually have five words for you: It’s the saddest thing ever. So you can be sad whenever you want. If your child is sad, something you can do is tell them to never give up. If they are getting a needle, you’ll probably feel them squeezing your hand really, really, really tight. Tell them: ‘Don’t worry. This is a one time thing.’ The hardest part will be seeing your child with a line to a machine that gives them weird medications that might hurt and make them sad. Then you can give your child a lot of hugs because that will make them less sad. And your child will say: ‘Don’t worry Mom, I love you and I’m going to make it through this.’ And then you can hug them even more.”