I never get tired of telling Nolan’s story.
It gives me a sense of pride and admiration for the struggles he has lived and continues to live. Nolan was born a beautiful and healthy baby boy on December 2nd 2010. He was our third baby and he completed our loving family. We brought him home and not long after he caught a cold, one he could not shake. He was ALWAYS congested. I would bring him to the Pediatrician’s every week and he would receive antibiotics for his congestion.
This went on for months. Week after week he was prescribed antibiotics. At 8 weeks he was hospitalized for RSV and he actually stopped breathing, just long enough to panic me and send the nurses running. I knew then just how special this little boy was and how strong our bond would be as mother and son. After his hospital visit, it was suggested that Nolan go to the hospital to be suctioned and given asthma masks instead of antibiotics which were not having any effect. So our new routine ensued. We would go to the hospital every three weeks or so to have his nose suctioned and get his breathing under control. We also slept on the couch most nights, just him and I. Yes even at a young age, he had me wrapped around his little finger….
At about 9 months Nolan broke out in a rash on his chest and torso. We went to the pediatrician’s; he blamed the laundry detergent. We washed everyone’s clothes and changed brands. No luck. We went back a week later, the Dr. blamed his cold, saying that it was his body’s way of dealing with it. I knew in my heart he was wrong. Next step was the dermatologist and allergist. Both had a course of treatment with a follow up the following week.
We were concerned but not worried. This is the part of the story I will always remember as clear as day: Thanksgiving Day weekend 2011 my world crashed. Nolan was having a difficult time breathing again and we were due for our 3 week hospital visit. As we were pros now and the nurses extremely efficient I knew (or thought) I would be in and out. My aunt came to watch the older monkeys, my husband was working out of the city, and off I went in the middle of the night to the hospital with my precious angel. As I was sitting waiting for the nurses a boy in a wheel chair severely handicapped was pushed past us, I hugged Nolan tight and said a small prayer for the boy and his family, thinking that no matter how many times I have to visit the hospital for breathing issues circumstances could always be worse.
The ER doctor we met was great, and thorough. She was actually less concerned about his breathing issues and VERY concerned about his rash, which was not spreading to his arms and legs and were tiny purple bumps, we later discovered they were tumors. His lymph nodes were swollen and his liver was enlarged. I had two options, go home but come back first thing in the morning or stay. I was going nowhere. The next day, and remember this was a long weekend; we met four specialist, Immunology, Infectious diseases, Dermatology and Hematology.
They all ran tests and Nolan and I waited. One by one their tests ruled out their various specialties. He did not have an infectious disease, immunology was ruled out and so was dermatology, by Sunday evening the only department remaining was Hematology. We were admitted for more tests. Tuesday morning Nolan had his first of many bone marrow biopsies. It felt like forever. We were told an hour later that Nolan had AML (Acute Myeloid Leukemia) a very rare form of Leukemia that genuinely targets older adults. We were numb, speechless and overwhelmed. Our world was shaken and broken. My baby was sick and I could not just bring him to the hospital to get suctioned.
His fight would be so much bigger than that. Now let me tell you how fast of a rollercoaster we went on. We had three days to prepare (Hahaha). I had to tell my other two babies that Nolan and mommy won’t be coming home for at least 4 months. They were 5 & 3 yrs old. Nolan’s treatment started that Friday, he went on to receive 4 rounds of chemotherapy. We were in isolation with very strict rules about germs and visitors.
The hospital staff was great, and we had all the support from the outside world that my family and I could have hoped for. Nolan’s first Christmas was celebrated in the hospital; he took his first steps and celebrated his first birthday surrounded by his new extended family. We were admitted when Nolan was 10 months old and we were released when he was 14 months old. We took the three kids on a mini vacation and we were overjoyed. During his hospital stay Nolan underwent several biopsies, he had a port inserted, and he was attached to an IV and was sent for numerous procedures to monitor his progress.
He was doing great, until he was released. We were not out of the hospital for more than the weekend when his rash came back full strength. It covered his arms, legs, chest and back. My heart ached. We called the Doctors who assured us that his blood results were fabulous, his bone marrow biopsy results had come in that day and they were clear, but I knew, his mama knew. The Doctors did not argue, they said come in Monday and we will look at him, so we did. They said all looks good, they said let’s wait a week. We waited a week…a very long week.
On Monday, just two a week after being released a biopsy was done on Nolan’s skin. I was standing up on the bus on Thursday night when our Doctors called to tell us that the cancer was back, or rather never left. It was stuck in his skin. A mother knows, a mother knows. So now what? Well Nolan’s case just went from successful to extremely fast progressing and grim. Our doctors were baffled and we were once again lost. Our world falling apart anew.
A new treatment was planned and executed for him. Radiation; full body, head and skin. For two weeks he was transported to the Montreal General hospital for radiation under anesthetic. More chemotherapy to get his very weak body ready for his transplant, a 100% genetic match to his big brother. I luckily donated my cord blood to Hema Quebec a few years earlier. It was still available, what a relief not to have to subject my older son through any procedures.
Nolan received his transplant May 2, 2012, a day we still celebrate. His new life began, his current life continued. Each day we see something new in Nolan, love him just a little bit more.
He is special in so many ways it would take me days to express them on paper, and still find new ones. He is precious, courageous and has the most contagious laugh. I do not talk about the many procedures Nolan has endured or the long and sad months spent at the hospital, I would rather tell you about how he survived those moments and celebrate his successes. Whether it be scoring the winning goal at soccer, or blocking the best shot to win the game. Laughing and snuggling in bed after a story. He has so much more to live and I am so looking forward to seeing what adventures lay ahead for my brave angel. This is Nolan’s story told by his mama.