Dylan's History
Dylan was born in July, 2002 in PA. For awhile it didn't seem like he wanted to come out. His mom was in labor for 22 hours before starting to push, and after 5 hours of pushing and a little assistance from a vacuum, our beautiful boy emerged with, of all things, a smile on his face. I thought babies were supposed to cry...
At Dylan's 3 month visit with his pediatrician, his doctor noticed a predominant metopic ridge on his forehead that she wanted to have checked out. After having X-rays done, it was determined that Dylan's cranial sutures were
closer together than normal for a 3 month old. We took Dylan to Children's Hospital of Philadelphia to see a prominent pediatric neurosurgeon to rule out craniosynostosis, a condition where the cranial sutures fuse together prematurely and prohibit normal brain growth and development from taking place. The doctor saw Dylan and assured us that he was not at risk for craniosynostosis.
Dylan's growth and development has been normal to advanced in every way. He has never been sick a day in his life. In fact, the kid eats better than most adults I know, preferring tomatoes and fruits and vegetables over cookies and chicken fingers. He has always had a healthy appetite for play and has the most contangious laugh.
In late November, 2003, Dylan received his MMR and Prevnar vaccinations. About 10 days later, my wife noticed that his right eye went crossed...only for a moment, but it was very noticeable. Dylan shook his head and his eye went back to center. This happened a couple of times during the month of December. In late December, it started happening more frequently, and by December 30th, 2003, his right eye was crossed most of the time. We took Dylan to see his pediatrician right away, who sent us to a pediatric opthamologist. Dylan's maternal grandmother had a crossed eye that needed patching when she was a child, and we were under the impression that Dylan had a strabismus as well.
On January 10th, Dylan saw an opthamologist who diagnosed him with a 6th nerve palsy. The 6th cranial nerve is responsible for the abducdens (or outward) movement of the eye. Apparently Dylan's eye was not just crossed, but he did not have the ability to move right his eye past center. The opthamologist ordered an MRI. Being so young, Dylan would need to be sedated for the MRI. My wife and I were nervous about this, and sought a second opinion from a pediatric neuro-opthamologist at Children's Hospital of Philadelphia. We made the appointment for January 22nd, 2004. This day turned into the absolute worst day of our lives. After examining Dylan's eye, the opthamologist also noted that the right side of Dylan's mouth was drooping a bit. He diagnosed a 6th and 7th nerve palsy and ordered a MRI to be done the same day. He was honest with us, telling us that there was a good chance the palsy might be do to a tumor. Later that day, we got the results. The MRI showed a brain stem glioma in the pons section of the brain stem. Because of its' location, the tumor is inoperable.
My wife and I are seeking every available treatment option, from traditional to non-traditional treatment alternatives. Our son and daughter are our world, and our biggest concern is that Dylan live every remaining day of his life with as little pain and as much happiness and love as we can give him. We have not given up hope, and continue to do everything we feel might possibly help our son beat this somehow. We will be posting a daily log to this site to keep everyone updated on what we are trying and how it is working. We want this site to not only be a resource for ourselves in our search for available treatments options, but also a resource for other parents or patients who might be going through the same thing. We have gotten a lot of leads and a lot of information in just a few short days, and we will continue to filter through everything we get and check everything out, because miracles do indeed happen. Again, thank you all for your support, kindness and compassion during this most difficult time.