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Honored Kid Adam S. Age 14

Adam S.'s Photo
Location
Chicago, IL, US
Diagnosis
Brain or spinal cord tumor
Date of Diagnosis
November 2012
Status
No evidence of disease (NED)
Treated At
Ann & Robert H. Lurie Children's Hospital

Message

FROM ADAM'S MOM:
On November 21, 2012, the day before Thanksgiving, I took Adam (who was nine years old) for an MRI of the brain because he had been having headaches and vomiting without any other symptoms of a cold or flu . When we arrived at the clinic, a nurse said she was going to insert an IV into Adam's arm because his MRI had to be administered with and w/o contrast. Adam was so scared to have the IV inserted and cried the whole time. I was mad at myself for taking him there, since he probably only had a stomach bug, and here I was putting him through this pain and promised if he just let the nurse insert the IV, he'd never have to get another one. (Unfortunately, I have lost count of how many he's had and the fear and pain doesn't go away. At one point he had them in his hands, arms, and feet all at once.) After laying still in the machine for about 45 minutes, the MRI was complete. Adam and I went back to the office and there was a doctor waiting for us. The doctor said, "We see something on the brain. I have already called your pediatrician and she will be calling you to tell you which hospital to take him to.  Do you have any questions?" I remember screaming in my head, "YES, I have a million questions!" but I did not want to scare Adam so I just shook my head NO. I don't even recall how I drove home!


The pediatrician had not called me so I waited almost an hour before calling her. That was when I first heard the word "tumor." My knees went out from under me.  I remember catching myself on my bedroom dresser. She stated that it was a 7cm brain tumor on his right, frontal lobe. (It was later described as the size of a tangerine). I wanted to scream and cry, but I had to hold it together for Adam who was in the living room. I had to walk out of my bedroom with a smile on my face and tell Adam that everything was okay. I told him we had to go to the hospital so that he wouldn't get anymore headaches or be sick to his stomach. Being the day before Thanksgiving, the pediatrician was having a difficult time finding a neurosurgeon. Finally FIVE hours later, she called with the news that she found a surgeon and for me to take Adam to the E.R. at Hope Children's Hospital in Oak Lawn and have him admitted. Adam was admitted that night and given medication to help with his headaches and vomiting. Adam had to have another IV inserted and the nurse was not able to find a good vein so she kept poking him. He cried and screamed the whole time!


We spend Thanksgiving in the hospital surrounded by family and friends.  Adam had not eaten since the morning before and since we didn't know when the neurosugeon would come in to perform the surgery, he was not allowed to eat or drink anything and he was so hungry!  It wasn't until the evening that he was allowed to eat because the surgeon decided not to come in until the next day.  
On Black Friday, Adam underwent his first craniotomy.  Again, we were surrounded by family and friends. Adam was in the OR for approximately five hrs. The neurosurgeon came out and said the surgery was a success and that indeed it was a tumor.  Adam lost a lot of blood during the surgery and had to have a blood transfusion.


When Adam awoke from the anesthesia, he was in horrific pain! I could hear my son's cries and screams at the other end of the floor! He was in so much pain that he told me that he wish he had died during surgery and that he wanted to jump off a bridge at that moment! It was the hardest thing I have EVER heard in my life and to this day, I can't even begin to imagine the pain that he was in! After about three hrs of screams and cries, Adam finally fell asleep. He slept that whole night and when he awoke the next morning, he never asked for pain medication again. He apologized to me about what he had said the day before. He told me he was actually one of the lucky ones. That many kids don't survive surgery or are in worse pain than he is. He even talked about a little boy from a book "Wonder" that he had just read. The little boy in the story was born with a facial abnormality and had undergone over 20 surgeries. Even through his worse, my Adam was still thinking of others!


Four days after surgery, the pathology report came in - stage 3 ependymoma cancer! "CANCER? How could that be? Cancer does not run in my family!"  I was in complete shock, but once again, I had to hold it together since Adam was just a few feet away from me in his hospital room. Once again, I had to walk into the room and smile pretending everything was okay.


The next day, a team of oncologists and a psychologist came to talk to Adam to let him know what he had. When he first heard "tumor" he became scared. When he heard "cancer" he started crying and buried his face into my chest! I held him tight! It broke my heart that I could not make THIS okay! But the doctors did a good job at explaining the diagnosis to him and making him feel less scared. 


After 8 days in the PICU, we finally went home and awaited results from an MRI and spinal tap that were performed before we were discharged.  Having to hold your child like a pretzel, so that a lumbar puncture can be administered was another horrific experience!  His screams and cries were heartbreaking!   Watching that huge needle going into his spine was very frightening!  But thankfully, days later, the results came back clear.  The cancer had not spread to the spine, which is common with Ependymoma. 


On December 12, 2012, I took Adam to Lurie Children's Hospital for a second opinion. That day an MRI was performed. The doctors said they saw what they believed to be a small piece of leftover tumor and that the only way to find out for sure, was to go back in.  On Dec 18th, Adam underwent his second craniotomy. Even though Adam knew what was to come, the excruciating pain he would be in, he never once complained or said that he did not want to go through with the surgery. As he was wheeled away into the OR, he just waved at me and my parents. After surgery, Adam was in a lot of pain, but nothing compared to the first time. He only spend two days in the hospital. The surgery was a success with the whole tumor being removed.  We were thankful not to have to spend another holiday in the hospital and happy to spend Christmas at home with our family. 


On January 10, 2013, Adam began treatment. He underwent 30 rounds of chemotherapy and 33 rounds of proton radiation. Adam never missed a day of school during his treatment and never got sick. He had horrible days, especially when the PICC line dressing had to be changed once a week with a heavy disinfectant on his raw skin. Adam lost his hair at the radiation site and to this day his hair has not come back and never will.  Aside from what he physically went through, he is reminded of his cancer every time he looks in the mirror and walks out the door to people staring, pointing, and/or laughing at his "haircut." 


To date, Adam has had eleven clear MRI's post chemo and radiation. His next MRI will be in March 2017.  He is currently 3.5 years cancer free.


Through his ordeal, Adam has had two brain surgeries, a blood transfusion, countless IVs, numerous spinal taps, been intubated, had 30  staples across his head (having them removed TWICE was no fun!), undergone chemotherapy and radiation, suffered from seizures, and has permanent hair loss at the radiation site (just to name a few).  He has gone through horrific pain and fear, but through it all, he never lost his sense of humor or his big heart!


Adam is now 13 years old and in 8th grade, looking into high schools. He is a good student who is in the National Junior Honor Society, President of the Student Council, Peer Leadership program, and STEM (Science, Technology, Engineering, Math) program. He is also involved with his school's band (playing the flute).  Adam loves to play golf, go bike riding, built Architectural LEGO sets, and of course, play video games.  He enjoys doing volunteer work - especially for the Chicago Police Memorial Foundation (most recently participating in Operation Santa in December).  He has also been shaving his head for St. Baldrick's the last three years and has done a couple of events for Make-A-Wish Illinois.
You can scroll all the way down on this page to view a gallery of pictures from Adam's journey.

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Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
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