Dylan had his 9:00 am exam with neuro opthamologist Dr. Grant Liu at Children's Hospital of Philadelphia (CHOP).
Dr. Liu diagnosed 6th and 7th cranial nerve palsies. He ordered an MRI to be done the same day.
Dylan was heavily sedated ...insert drugs... for the MRI. He even had 2 episodes of apnea while being
sedated and was administered oxygen. At approximately 7:00 pm, Dr. Liu called us with the terrible news.
Dylan had a growth in the pons area of the brain, diagnosis was intrinsic
pontine glioma. Dr. Liu said he had spoken with neuro oncologist Dr. Beverly Lange. The growth was deemed
inoperable. My wife and I were thunderstruck. We felt completely and utterly helpless.
Dr. Lange came to radiology unit to meet with us. She was very straight forward about Dylan's prognosis.
We appreciated her honesty. Dr. Armstrong from Pediatric Oncology joined us in the back room. Dr. Lange
and Dr. Armstrong spoke with us for quite awhile, explaining that there is no known etiology for pontine
gliomas and, much worse, no effective long-term treatment strategies. They cited radiation therapy as the
most viable treatment plan, but they also said that on a patient as young as my son, they would support
our decision not to radiate. Radiation therapy would involve an intensive 6 week, 5 days per week protocol
and Dylan (given his age) would have to be placed under General Anesthesia for each treatment.
As you might expect, this was more than Michelle and I could handle at this point. The docotrs admitted
Dylan into the Pediatric Intensive Care Unit to monitor his breathing after coming out of the IV sedation.
Dylan was also administered a steroid called Decadron that would decrease the pressure in his head and
better allow the flow of Cerebral Spinal Fluid (CSF).
Friday, January 23rd, 2004 (Day 2)
Dylan was seen by Dr. Klem, a neurosurgeon, who spoke with us about the possibility of putting a shunt
into Dylan's head. He explained this surgical procedure as implanting a tube that would bypass the normal
pathway of CSF and ensure that the tumor would not completely stop the flow of CSF. Dr. Klem was going to
review with Dr. Leslie Sutton, Chief of Neurosurgery at CHOP.
Throughout the day, we met with a host of other people (oncology social worker, paliative care case manager,
psychologist, nurses, radiation oncologist) as well as Dr. Lange and Dr. Armstrong. Everyone was very kind,
compassionate and supportive, however Michelle and I just wanted to go home and be with our family. We had a
meeting at 2:00 pm with all invited to discuss various types of treatment options, support groups, and paliative
care services. Dr. Lange offered some other treatment options, but nothing that might prove effective while
still maintaining Dylan's quality of life. Dylan was realeased and we made the long trip back home.
Getting home (home for now is at Michelle's parents house in North Jersey) was both emotional and relieving.
Dylan was not himself in the hospital, partly due to the drugs, parlty due to the fact that he was being
poked and prodded for two days, and partly due to the fact that he didn't have his Baby Einstein videos
with him.
Saturday, January 24th, 2004 (Day 3)
We picked up Dylan's prescriptions just in case he needs them. The meds include Decadron (a steroid that helps reduce pressure and swelling in the head), Zantac (to ease possible upset stomach, a side effect of the Decadron), and Morphine (to ease any pain or discomfort). We then began our search for any and all help we can find. Doctors and Hospitals we contacted today were:
* Dr. Garvin, Ped. Onc. at Columbia-Presbyterian
* Burzynski Clinic in Houston, TX
* Dr. Hans Gerd in Germany
* Cryo-Cell International (Michelle and I banked Dylan's cord blood at birth and we were trying to see if this could be of any use for this dx)
Dylan was finally himself again. He played all day, ate well, and is in good spirits as usual.
Sunday, January 25th, 2004 (Day 4)
My parents came to visit. It's great having a lot of people around. Michelle and I need all of the support we can get. Mom brought Holy Water from Lourdes for Dylan. I was back on line digging and searching for more leads. Michelle's chiropractor gave us a call and recommended a chiropractor (Dr. Robert Buis) in Hawthorne, NJ who had a couple of success stories with tumor patients. We have since found out, coincidentally, that Dr. Buis is the brother of one of our neighbors. Samll world. On the conventional medical front, I contacted the Dana-Farber Cancer Institute, which apparently operates in conjunction with the Children's Hospital of Boston. It seems they take a more integrative and holistic approach to tumor therapy. We will definitely follow up here.
Dylan had a blast... even more people to play with. He feasted on Grammy's pasta with meat sauce. You'd never know he had anything wrong with him.
