John M.
New York
Birth Date - November 19, 2010
Main Diagnosis - Diffuse Intrinsic Pontine Glioma (DIPG)
THEME: Puppies
Biography
John was born a healthy, beautiful and happy little boy on Nov. 19, 2010. All boy, he loved running, helping his Poppy in the gardens, going to his gymnastics play group and swimming lessons at the YMCA.
A few months ago we began to see some problems with his speech patterns, after discounting the adage that "boys are a bit slower than girls on talking", we began having speech therapy coming in to evaluate him.
On Oct 2nd I noticed that his right eye was looking off to the outside aspect, My parents arrive Friday, 2 days later and it was the first thing my mother noticed. We watched him through that day, he was acting fine, and on Saturday we went to the Buffalo Science Museum to play. While there we noted that the eye seemed worse, and noticed a weakness in his right arm. I immediately called his Pediatrician who said to take him right in to Buffalo Woman's and Children's Hospital ER. After a CT scan it was decided to admit John as the Dr's wanted to do an MRI, and needed anesthesiologists to be on duty for the test.
Barely after beginning the MRI on Oct 6th, the Radiologist came out and said, that we know the test normally takes an hour, but he didn't want us sitting there wondering...that they would be in there quite awhile longer. That they had found a mass, that it was as bad as it could be, and as soon as they could they would be out to speak with us.
Our world slowed and sped up at the same time...and we were given the diagnosis of DIPG. Basically a walnut sized infiltrating tumor located on the Pons area of the brain stem. There is no surgery, there is no chemotherapy. The only treatment available is a course of Radiation 5 days a week for 6 weeks in conjunction with steroids, which bring along their own set of horrific side effects. The hope, the prayer is that the radiation and steroids will shrink and slow the tumors growth for a time, basically to buy us a few months.
There are around 150 cases of Diffuse Intrinsic Pontine Glioma diagnosed each year. Once diagnosis is made the prognosis is grim, most children do not survive a year. The 2 year survival rate is under 20%. There are currently no Phase II or Phase III trials ongoing, which are the only ones that anyone would consider trying.
Our world stopped and sped up, stopped and sped up, and continues to do so on a daily basis as we battle through the complications of treatment. Our lithe little man who was wearing 24mos. sized clothes has ballooned up from the steroids to the point that his Nonni had to buy him new clothes....all 5T
We face his treatments and our days with one resolve, to give as much life to our son as we possibly can in the time we have.
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