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Connor Robert White was born on July 6, 2012. He started showing symptoms on Thanksgiving day and passed away 6 and 1/2 weeks later on January 6, 2012 at the age of 6 months old. Cancer shows no mercy. Please Help Connor Cure Cancer at www.connorcures.org.
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On November 22, 2012 - Thanksgiving Day - our 4 and 1/2 month old son Connor started getting sick - vomiting in the morning, but nothing else. It happened 3 out of 4 days that weekend, but after he got sick, he was happy and ready to eat again. We consulted his doctors, but we didn't think much of it because it stopped.
Friends visited the following weekend and he threw up again - unfortunately all over one of them. He became progressively worse, barely able to keep anything in, even when we fed him little bits via a dropper. We took him to the doctor and ER twice that week due to dehydration. He had a light fever, so we thought it was a stomach bug. He was able to keep his fluids down after getting some zofran to help with the vomiting. When we ran out of zofran the following weekend, he started to get sick again.
On Thursday, December 13th, we asked to get an ultrasound to determine if he had pyloric stenosis - he did not.
On Saturday night, December 15th, he was continuing to vomit, so Beth and I basially stayed up with him and kept him propped up in our bed that night. We decided we were going to the ER and we were not going to leaving until we had a diagnosis and was hopefully admitted to try to help him.
On the morning of Sunday, December 16th, we went back to the ER at Inova Fairfax in the late morning. We took Connor to the ER and were finally admitted early that evening with a diagnosis of gallstones.
That evening, after being admitted, Dr. Port took a look at Connor. She noticed that he wasn't holding his head up enough for a 5 and 1/2 month old, so she decided to run a cat scan. It was late, so I went home to get some sleep not thinking it was anything serious with Beth staying with him overnight. I received a call from Beth around midnight that I had to come back. She gave the news that Connor had a brain tumor. We didn't know the details, but regardless we were terrified.
Around 230am on Monday morning, they inserted a drain to relieve the pressure from the fluid buildup. They did an MRI and didn't find any other tumors, so that was a little bit of good news.
On Wednesday, December 19th, Dr. Myseros, his surgeon, performed brain surgery on our baby to remove his tumor. We found out that the tumor was large - about 5 centimeters; it was in his cerebellum (posterior fossa); and it was blocking his brain fluid from draining down his spinal cord - therefore causing many of his other symptoms. He determined that it was cancerous, likely AT/RT (Atypical teratoid rhabdoid tumor) and they remove all of it except a few cells from his brain stem. They did not want to touch his brain stem, as that controls many of the bodily functions. Dr. Myseros is one of the best at what he does, he's part of the world renowned team from Children's National Medical Center. The procedure took about 5 hours.
Following surgery, Connor spent about a week in the PICU and then moved on to the Pediatric Oncology/Hemotology section of the hospital. When the pathology on the tumor came back, it confirmed what Dr. Myseros thought during the surgery - it was an AT/RT (Atypical Teratoid Rhabdoid Tumor) tumor - one of the most aggressive and deadly brain tumors a child could have.
In the PICU, his nurse Katie and in the O/H section, his nurses Brooke, Kristen and Victoria were just a few of his angels through his stays there. They were unbelievable in handling not only him, but also his parents and streams of family and friends who came to visit Connor. We were amazingly lucky to get one of the top Pediatric Oncologist in the area, Dr. Jeff Knipstein. Jeff spent the last 4 years specifically studying AT/RT brain tumors and worked on the staff of the world renowned Dr. Packer. Jeff was not only Connor's best hope, but also one of the best people we've ever met. If there was anything anyone could have done to help Connor, it was Jeff and the team of nurses.
From the time he started getting sick to the day he passed away was a mere 6 and 1/2 weeks. He was exactly 6 months old the day he passed away. We had the best doctors and nurses you could find anywhere. I don't know many 6 month olds who were loved more than Connor. We miss our baby so much, it hurts to think about it at all. We hope we can help others avoid this awful feeling.
The rest of Connor's story can be seen in the journal updates.