Connor Robert White was born on July 6, 2012. He started showing symptoms on Thanksgiving Day and passed away 6 1/2 weeks later on January 6, 2013; the day he turned 6 months old. Cancer shows no mercy.
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 started throwing up again. He became progressively worse, barely able to keep anything down, 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 basically stayed up all night with him and kept him propped up in our bed. We decided we were going to the ER and we were not leaving until we had a diagnosis and were hopefully admitted to try to help him.
On the morning of Sunday, December 16th, we went back to the ER at Inova Fairfax. He was 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. Dr. Port had given Beth 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 it didn’t show 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. The procedure took about 5 hours – 5 of the longest hours of our lives.
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, we were lucky to have him.
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 – one of the most aggressive and deadly brain tumors a child could have. Less than 10% of children under age 3 survive this type of tumor and those that do usually have long-term side effects.
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 time 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 works 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. We don’t know many 6 month olds who were loved more than Connor. We hope we can help others avoid this awful feeling.
Please Help Connor Cure Cancer