Connor is three years old and loves being with his twin sister Claire, being outside, Mickey Mouse, Elmo, cars and trucks. Connor and his twin were micro-preemies and were monitored closely. At one of Connor’s follow-up checks, someone noticed that his head was tilted. He was referred to a physical therapist, who noticed that he had trouble with balance. After a visit to a neurologist and an MRI, he was diagnosed with rhabdomyosarcoma with its primary site in the brain. This is a very rare type of childhood cancer.

Connor has had two brain surgeries and completed 6 rounds of chemo.  He also received proton radiation treatment. During this phase of treatment, he and his family had to live for seven weeks in Boston, far from their New Jersey home. In all, he has spent over 130 nights in the hospital away from his twin.

Connor came home from his final stem cell cycle December 22, 2014. On January 22, 2015 he had his post treatment scan and four new tumors were found, one unfortunately in the pons which is inoperable and already received its lifetime dose of radiation. His family changed their focus from cure to care that day and initiated hospice care.  Connor is still with them, but has lost the ability to do everything.

Connor’s family is trying to take it one day at a time.

Information provided by Erin Crooks, Connor’s mother

Update: Sadly, Connor passed away on June 18th 2015, at the age of 3, after  his ‘Superhero’ battle against cancer.