Birth Date - September 30, 2015
Diagnosis - Pre B-cell ALL
Theme: Thomas the Train, Bob the Builder & Mickey Mouse
Due Date: 10/1/18
In July 2017 Nolan was on vacation with me visiting his grandparents in South Carolina. We were over 1000 miles from home when he was diagnosed. About two weeks prior I had started to notice minor bruises, and he slowly stopped eating. I called his pediatrician before our trip and we both seemed to think he was bruising because he was a 21-month-old boy and eating picky because he was a toddler and teething. When we arrived at my parents, my Dad said Nolan looked terrible. We called the doctor and brought him to a walk-in clinic. We were told he had petichiae and sent to an Emergency Room. His blood work showed it was leukemia and we were immediately taken on a two-hour ambulance ride to the Medical University of South Carolina in Charleston. Nolan spent 12 days in their oncology unit and was diagnosed with Pre B-cell ALL.
Nolan went from being a wild, happy child to overnight not eating and being very moody. To say the diagnosis was heart breaking is an understatement. My husband flew down and we stayed at the Ronald McDonald house until Nolan could get on a Medical Transfer flight back to Connecticut Children's Medical Center for further treatment. We love our doctors and our hospital. We love our clinic and our nurses. We feel very blessed to have the very best care in our own backyard for our son.
I have taken most of the year off from teaching to take care of Nolan. He turned two on September 30, 2017 and we had a wonderful party. He has been undergoing chemotherapy on a regular basis. After 30 days, he had 0.00% residual disease and was declared in remission. We are lucky that his only side affects are lack of appetite at the moment. He still has 2 1/2 more years of chemotherapy and will complete his treatment on November 16, 2020. We are so happy to have an end date in mind, but it's still a very long road for our family.
UPDATE 5/16/18: Nolan is doing well. He's getting what looks like baby acne on his face that is a side effect of chemo withdrawal. He's getting lots of eczema and skin issues but otherwise healthy and happy. And his hair is slowly growing back!
He gets oral chemo every night at home in a liquid format and also weekly methotrexate chemo at home. Next week he goes into clinic for his second spinal tap. Only 30 more monthly spinal tap outpatient chemo/clinic visits to go! November 16, 2020 last day of chemo...eyes on the prize. In the meantime, we’ll take the happy times of maintenance.
"I just wanted to say a sincere thank you. I was brought to tears today. Thank you from the bottom of our hearts to all. I'm humbled and you all have renewed this Mom's faith in humanity."