CONNOR STRONG - Kick Cancer

Connor was diagnosed with stage IV Neuroblastoma in Feb 2012, just days after his little sister, Lily was born. He endured an 18 month grueling treatment that consisted go 7 rounds of chemotherapy, several surgeries, 2 tandem stem cell transplants, MIBG radiation therapy and 6 months of antibody therapy. He was NED, or cancer free in December 2012. He finished treatment in July 2013 and was enjoying life as a very healthy boy. During routine scans in April 2014, there was a spot found on his head and with further CT and MRI scans, it was confirmed that the neuroblastoma had returned and it came back in his brain. That was the only spot found, however, neuroblastoma in the brain is a rare occurrence and the treatment available is very limited. He had surgery to remove the mass successfully in April and chemo was again given. On 6/1/2014, he had 3 rounds of chemo (1 week each round). After chemo was completed, he had proton therapy at Hampton University Proton Therapy Institute in Hampton, VA. That consisted of 5 days a week and 5 weeks long. Once that was completed, we traveled up to Memorial Sloan-Kettering Cancer Center in New York City to have an Ommaya port placed in his head and antibody (8h9) therapy delivered to his brain and spine. After that was finished, he got another treatment of antibody given in his port for the rest of his body. It was given 1 week a month for 4 weeks. All of the therapy was done outpatient. Then his CT and MRI scans came back clear in February 2015.  The Doctors continued treatment for the cancer as planned even though scans were clear. The treatments continued to be difficult but he was brave through it all. Then in May he continued to test positive for HAMA (an antibody for cancer) and they wouldn't be going back for round 2 of 3f8 for a while. (The family also moved to a different state during this month as well). His doctor at Sloan-Kettering started chemo for 6 weeks and then 2 more weeks of accutane. The chemo is what he's had before. It's oral and at home. It's tough on the liver, so they had to check his counts every few weeks. It was very frustrating for them and they hated the thought of more chemo, but they wanted to get another round or 2 of the 3f8 since it was the best chance for him to keep it from coming back. He was been doing very well and was enjoying life by playing soccer and taking swimming lessons. Then in July Connor started having headaches, low grade fevers and noticeable swollen lymph nodes. During this time one side of his face started to slouch and he was diagnosed with Bell's Palsy. In the beginning of August (2015) he started sleeping 20 hours a day and was very tired when awake.  August 6th brought devastating news. The doctors said he relapsed again!!! The cancer was back with a vengeance in his lungs, liver, pancreas, skull and probably even more places.  It's just too cruel! The plan is we are NOT GIVING UP!! They are going to start 2 chemos now (Irinotecan and Temozolomide) starting today for 5 days. He is getting blood and platelets. The family is able to give him the chemo at home for the rest of the week after they left the hospital on 8/10/2015. They will need to return every few days to get counts checked and blood and platelets as needed. This regimen was supposed to be added with Carboplatin (a third chemo) but this will bring his counts WAY down and he would need stem cell rescue. Two reasons they can't add this now is 1) His bag of stem cells are still in his previous home state and 2) The new hospital doesn't do stem cell transplants. So they have to be transferred to another new hospital in a few weeks (once his counts recover from this dosage). Then he will get all 3 and several days later when he hits his low, the rescue will happen. We are hoping and praying this will get this crap under control, stop it and God willing, get rid of it. Once they can get it under control, they can start looking at any new trials that he may qualify for. They have spoken to the Pain and Palliative care team to keep his pain under control so he won't be suffering. The Doctors at the current hospital looked at the scans from Sloan and agreed, he has just too many spots throughout his body to count. Mainly in the liver, pancreas, spleen and lungs. Several in his skull, jaw, and lymph nodes and especially bone marrow. Despite what the doctors think his prognosis is, WE ARE NOT GIVING UP!!!! We will fight and fight. But the family will NOT let him suffer either. They will do whatever it takes to keep him comfortable and overcome this. And he WILL beat it again!!! ‪#‎CONNORSTRONG