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READ MOREPublished on September 17, 2018 in Events, Fundraising, In the Community, Legislative Issues, Take Action, Volunteering
Guest Author: Lori Stephen
I thought we would never face a challenge bigger than infertility. I look back now and realize how our journey to parenthood could have been a lot more difficult, but, at the time, it felt torturous. Then, we found our joy…IUI worked and we were expecting a baby boy. We had no idea what was to come; we had never been parents, after all! On August 21, 2010, we welcomed Theodore Nicholas into the world, and, just like that, we had a perfect, little family.
Theo wasn’t our only addition that month. A few days later, my 7-year old cousin moved in with us, in need of a stable and loving environment. He was fantastic with Theo; he loved watching him grow and seemed proud when he made Theo smile. It was a sweet bond. It was certainly challenging going from zero children to two children with wildly different needs, but I couldn’t feel more grateful for that time with those two boys. Ten months later, the school year ended, and my cousin had the opportunity to be with his father. We had mixed feelings about it, but felt somewhat grateful to be able to devote all of our attention to Theo for a while.
It was mid-August 2011 when we learned Theo would be a big brother! The joy we felt was indescribable. Shortly after that revelation, we noticed Theo’s first recognizable symptom: he began tilting his head to the left. Getting ready to celebrate his 1st birthday that weekend, we took Theo to the pediatrician, thinking he may have an ear infection that we didn’t want to interfere with the festivities. The doctor at his sick-visit didn’t see anything concerning and sent us on our way. Family and friends came to Theo’s barnyard birthday bash and, even though he didn’t seem as chipper as usual, he dug right into his birthday cake!
Three days later, however, Theo’s balance rapidly deteriorated and he could no longer sit unsupported. We were back at the pediatrician’s office, this time with a different doctor. This doctor noticed a slight change in his head circumference and she told us she was looking for signs of pressure in his head, of which she didn’t see. She determined that, because Theo would be seeing his regular doctor in two days, he should be re-examined and sent for scans if there was no change for the better.
His regular pediatrician got right to business. He very calmly spoke to us about hydrocephalus and that he wanted to see a CT scan to verify and to see the cause. We went directly to the emergency room where the scan confirmed a mass in Theo’s brain.
What followed was hard to process. Some details I can describe in vivid detail, while other moments feel like they happened to someone else. But they didn’t.
Theo underwent surgery to remove 80% of the mass that was situated between his brain stem and cerebellum. Pathology took an eternity, but eventually was determined to be medulloblastoma – a malignant tumor requiring several rounds of chemotherapy, as well as stem-cell transplants. He was transferred from the University of Maryland PICU to Johns Hopkins Children’s Center, where he continues to follow-up annually with his oncologists.
We never liked being at the hospital, but treatment was made bearable by the support of our family and friends, as well as the amazing nurses, doctors, and other staff. Theo is the one who made it easiest. Theo endured everything with a patience and calm that was shocking from a one year-old. Fortunately, he rarely felt sick, and he was easily soothed with snuggles. We spent our weeks alternating between home and the hospital, and I think we were a little afraid to get too comfortable anywhere. This part of our journey took a big toll on our marriage. While we tried to be supportive of one another, there was no denying that our needs took a backseat to Theo’s in a big way. It took a few years to really settle into what became our new normal (with a grand total of 3 babies!) and to be able to put some more work into making our marriage stronger and healthier.
During treatment, we tried to go on with some aspects of life as normal – work and nursing school kept us busy, and we were also trying to appreciate the anticipation of our baby girl by decorating her nursery and thinking of names and how loved she would be, too. While we had to be away from Theo at times, he was never without a family member; someone he loved was always with him, to comfort, entertain, or take naps with. It’s difficult to pass the time with a one-year old in a hospital, but toys and wagons, books and movies were always available, making things a whole lot easier. Listening to books and looking at pictures was one of Theo’s very favorite things to do, and now he’s an avid and excellent reader.
Upon the completion of treatment, we were full of hope that this would be behind us, and fear that it wouldn’t. Theo was a year old when he was diagnosed with brain cancer. His life was just beginning, yet we were facing the agonizing fear that this could be the end. But, here we are, 7 years later, having just celebrated Theo’s 8th, glorious, birthday.
As his parents, we sometimes worry that Theo will view these challenges as barriers. But, more often than not, Theo proves to us and everyone else that nothing can stop him.
Theo has overcome more challenges than most people are faced with in a lifetime. Some of the effects of his tumor and treatment are hearing loss, vision issues, speech delay, extensive dental issues, fine and gross motor deficits, and growth hormone imbalance. As his parents, we sometimes worry that Theo will view these challenges as barriers. But, more often than not, Theo proves to us and everyone else that nothing can stop him.
Sometimes, I ask Theo what kind of person he wants to be, and he says, “I want to be a person who brightens other people’s days”, as well as a “mystery-solving astronaut who does magic karate to make people laugh.” I’m fairly certain he’ll make this happen.
It’s my privilege to believe in Theo, and it’s my passion to advocate for him. I’m full of hope for Theo’s future, and I want to ensure that he has every bit of support he needs along the way. Enter National Brain Tumor Society! First, I heard about the Race for Hope DC through a family friend, and Theo’s Green Racers has been racing each year since 2013.
Each year, our ever-changing team gathers to celebrate Theo’s health, as well as to raise funds for organizations dedicated to brain tumor research. When I learned about Head to the Hill in 2017, I couldn’t pass up the opportunity to get involved. I felt overwhelmed and intimidated at the thought of meeting with politicians, but my desire to advocate for Theo far outweighs a little emotional discomfort. I’m extremely proud to say that, twice now, Theo and I have sat with our Congressmen to tell our story, to educate them about the needs of the brain tumor community, and to advocate for funding and legislation.
Theo’s future looks bright, and I want others to see that. But I also want people to know that his fight is not over. So, we will continue to Race for Hope, and Head to the Hill, and go to the Baltimore Brain Tumor Walk. We will do these things for Theo and for the kids just like him, who deserve the best chance at the brightest future.