October 25, 2017 was the day our lives changed forever. After our 6 month old started randomly vomiting and becoming more lethargic over a few days, his health regressed rapidly over ~24 hours and was diagnosed with a very large brain tumor. The official diagnosis was an Atypical Choroid Plexus Papilloma, a very rare childhood brain tumor. We were rushed from UMass in Worcester to the ICU of Boston Children’s and over the next two weeks, Conor underwent two long and complex brain surgeries to remove the tumor. By nothing short of a miracle from God and genius medical professionals at BCH, Conor’s tumor was removed and our son’s life was saved! After 6 weeks at Boston Children’s, we went home to begin the road to recovery.
As a result of the tumor and surgeries, Conor had lost all function of his right arm and much of his right leg. The following 9 months involved many appointments and physical/occupational therapy sessions to help Conor rehabilitate and he slowly began regaining function and achieving milestones that we were unsure if he would ever reach! In August he began to crawl and was showing no signs of stopping. Just a few days after he began crawling, Conor went in for his checkup MRI on August 15th (which occur every 3 months) and our worst nightmare had come true. The tumor that we didn’t think could return, had regrown in not only his brain but also spread to his spine. We learned that in rare cases, the Atypical Choroid Plexus Papilloma can behave like the malignant form of his tumor and spread.
On September 10th Conor began his first round of chemo treatment through Dana Farber/ Boston Children’s. His specific protocol included five straight days of intensive chemo through both an IV and a port in his head. We spent one week each month as inpatient at BCH and were seen on the off weeks at the Jimmy Fund Clinic. An MRI was performed on October 31st, after two cycles of chemo, and it was determined that the tumors were not responding to the treatment and continued to grow at a fast rate. Conor began a different, even more agressive chemo regimen on November 16th. After two rounds of this chemo regimen, Conor's tumors appeared to be shrinking, but unfortunately after four cycles, the tumors were no longer responding to the chemo. We are now on to Plan D, three rounds of high dose chemo which require stem cell transplants after each round.
We owe our son’s life to Boston Children’s Hospital. The nurses, doctors, child life specialists, music therapists and all the staff have become family. Through all of our days/weeks/months at BCH, we have felt assured that our son is in the best hands and our entire family is being cared for. As a parent, I will never forget the moment we walked into the ICU in a state of shock to find a huge team of doctors and nurses waiting for us, ready to care for Conor. As first time parents, we have spent much of our son’s life in a state of fear and helplessness yet the nurses and staff at BCH have helped us hold onto hope and celebrate all the little moments. There are not enough words to say how grateful we are for all that BCH has done for Conor and our entire family. Conor’s treatment is far from over and many scary and uncertain moments lie ahead, but BCH gives us hope that our son can beat brain tumors/brain cancer!
We are so thankful to be partnered with Mike Sosik as he trains and runs the Boston Marathon. April/Marathon Monday is almost here and Conor still has a long road of treatments ahead of him. He will be in the hospital recovering from cycle one of chemo/stem cell transplant, but we look forward to celebrating the Boston Marathon along with Conor's 2nd birthday (occurring later that same week!)