As we all know, brain tumors, and any other devastating disease, affect not only the patient, but also everyone around them. Doctors are of course the first line of defense for any illness, but I am of the firm belief that there are so many other heroes that have helped in this journey. For that reason, I have decided to share parts of my story from the point of view of others who were involved all along the way.
This entry was written by my father. He has been there for me throughout the entire ordeal spanning over the past five years. As I was in a fog for much of the time I spent in the hospital, I am not in the position to write about the first surgery and the story behind it all. Here is the story from a parent’s perspective.
I could not sleep on July 1st, the evening prior to Chris’ surgery. I wandered into Chris’ bedroom at about 4 AM and there on his bed was a perfectly wrapped bag of birthday presents for Chip. Chip is our “other” son…a handsome Cavalier King Charles Spaniel, who happened to be Chris’ best friend and coincidentally (or just strangely), July 1st was his birthday. Chris never liked dogs and did not want a dog when our other son Stephen came home in the fall of 2001 and announced that “every boy should have a pet dog”…but Chris and Chip became best friends. Chris would sit down in the evening and Chip would immediately jump on the sofa to cuddle with him…they were inseparable. When I saw his forgotten birthday gift sitting on Chris’ bed that morning, I had an overwhelming feeling that everything was going to be all right.
My wife and I got to the hospital at 7:00 that morning and were greeted by teams of doctors, anesthesiologists, nurses, and support staff. There sat Chris…anxious, but at peace and confident. Dr. Joseph Piepmeier was the neurosurgeon who was going to perform the surgery, and as confidently as you could possibly imagine, he described in depth how the delicate procedure was going to be performed. Dr. Piepmeier is the Nixdorff-German Chair in Neurosurgery and Professor of Neurosurgery at Yale University, and my wife and I had the utmost respect for his plan of action. At 8:00a.m., it was time to prep Chris for his 9:00a.m. surgery, so we said our emotional goodbyes with Chris being the most confident of all of us. My wife and I immediately went to the chapel, where we prayed, hugged each other for support, and cried for the first time.
The surgery began on time and throughout the day we had family members join us in the waiting area as the time moved at a snail’s pace. At 1:30p.m., Dr. Piepmeier came out of surgery to speak with us and thinking the worst, my heart almost exploded out of my chest. The tumor was much larger than the MRI indicated and was also more invasive. The tumor had actually pushed his brain to both sides of Chris’ head and Dr. Piepmeier was having difficulty in his efforts to remove it as cleanly as he had hoped, the surgery was going to take much longer then he had anticipated. At 5:35p.m., 9 hours and 35 minutes after the surgery began, we were summoned into the consultation room where Dr. Piepmeier was waiting for us. He laid out the facts for us…the tumor was almost the size of a grapefruit, it was spread out all over his brain area, it was estimated that the tumor was between 3-6 years old, the main area of tumor’s inception was in his ventricles, he believed that he got it all out but there were no guarantees on that, and most importantly the biopsy was benign.
We hugged each other, and then hugged Dr. Piepmeier and I think I saw a tear well up in his eye. We were told that Chris would be in the recovery area for about 2 hours and when we finally saw him in the ICU, we were shocked by his appearance. Tubes, electrodes, monitors were everywhere, and this very strange meter that was imbedded into his head, that protruded from all of the bandages and beeped every time his cranial pressure began to build up…but facially he looked beautiful.
My wife stayed with him in the hospital that evening and I went home with Stephen. Chip was anxiously waiting for us and when he did not see Chris he immediately jumped on his spot on the sofa, whimpered, and kept looking for his buddy. Little did we know at that moment, Chris’ descent into hell was just about to begin.
This is a beautiful thing that you are doing the documenting of such an event might be hard for someone to comprehend, however as one who can identify with what you went through it is heart warming that you share your inner feeling with all of us who have subscribed to your
website.
website.
You go through a tremendous amount emotions some sad and some
joyous. It amazing how during the process little accomplishments are
life altering
joyous,
TYou
thank you for being so open and for sharing your story. we are thinking of all of you throughout this holiday. take good care, peaceandlove, JS
It’s amazing that our experience, as parents, were so similar. Sofia is much younger and although she has memories and experiences anxiety and stress when visiting the hospital for MRIs and follow-ups, she does not comprehend the depth of her condition as did Chris.
I was that parent who had no control and put all my faith in the miraculous hands of great neuro-surgeons and the faith of God. 9 hour surgeries and lots of prayers.
Thanks for sharing. It’s powerful when we are reminded that we are not alone and that we are the fortunate ones!
A big hug and hope to see you soon.
Love, Silvana