August 11, 2012. How can it be two years later? Two whole years! And how much has happened in those two years, my God. I have been keeping track of Ty's journey in a document saved on my computer. It includes a timeline of events and almost an abridged version of this blog. The one thing I don't think I've ever included here, though (in such detail, anyway) is what I wrote about the day Ty was diagnosed. It was exactly two years ago from today and I just want to reflect. I realize it may be too long to read through - but at the very least please scroll down and view the compilation video I created via YouTube. You can't watch it from a mobile device (I think because of the rights on the song) so please, please, please watch from your laptop or desktop when you can. And feel free to share! I love it and I hope you do too. It is my love song to the greatest love of my life. My Ty.
Ty was a rambunctious toddler with curly blonde hair and an infectious smile. He didn’t have any developmental delays, medical issues or neurological deficits prior to his diagnosis. However, Ty was never a good sleeper since the day he was born. He woke up frequently throughout the night crying and whining, but we could always soothe him back to sleep. We discussed this with his pediatrician on several occasions and we even had him scheduled for a sleep study for some time in late August 2010. After a week straight of increasingly sleepless nights earlier that month, we decided to instead take him to the emergency room for imaging. He was crying and whining all through the night but he couldn’t tell us why and we just couldn’t stand it anymore.
Ty didn’t have any neurological symptoms. The doctor’s at Cohen’s Children’s Hospital (Long Island, NY) didn’t seem very concerned, but they reassured us that it was a good idea to get an MRI just in case. Since his case wasn’t urgent, we had to stay inpatient for a second night because we were waiting for MRI/anesthesia availability. Ty slept beautifully at the hospital. Not even a whimper all night. We laughed the next morning and couldn’t wait to get the MRI over with so we could go home looking like silly, worried parents. At least we would be at peace knowing that he was fine.
We packed up our things and couldn’t wait to go home. Lou was standing in the hallway when he saw the neurology team heading down toward our room. “Is it good? Can we go?” he asked with a smile. “No?” With that he turned to look at me in slow motion and the walls began the melt. The sounds in the room became muffled. The world around us was falling to pieces.
The devil was unveiled on a computer screen, right there in front of us. The MRI image showed Ty’s profile with a tumor, about one inch in diameter, growing from his clivis and pushing against his brainstem. No wonder he couldn’t sleep. Lying down increased the pressure on his brainstem and was causing intermittent head pain.
The following week was a blur. We traveled to speak with several of the nation’s best pediatric neuro-surgeons. We talked about the different approaches which ranged from cutting through his upper jaw (also known as a La Forte) to trying an endoscopic approach through his nose and mouth. We spoke to strangers who had children going through similar surgeries. We answered every phone call and followed through on countless recommendations (…”you must talk to this doctor… you must look into this facility… you must feed him apricot seeds…etc.”).
During this short week at home, Ty began to fall apart before our eyes. It was as if the tumor knew that the gig was up and decided to come out of hiding. Ty’s speech began to slur. He lost the ability to drink from a straw, then from a sippy cup. His head pain was becoming unbearable and he started suffering during the daytime, too. We went home with a smiling toddler and were told we had plenty of time to decide about surgery. Instead we had to rush him into surgery with Dr. Steve Schneider at Cohen’s Children’s Hospital just days later. Dr. Schneider is very well-known for endoscopic brain surgery in children and we were confident that this would be the best approach for Ty.
And so our journey began. We hope you will continue to follow his roller coaster journey here on www.superty.org and like him on Facebook at www.facebook.com/thelittlefighter. Without the support of friends and strangers, we believe he would not have come this far. A fighter he is, indeed.
FOR YOU I BLEED MYSELF DRY
Ty, my love, that statement couldn't be more true. Anything for you. You are my everything. Here is my love song to you on your two year anniversary. XOXO. I love you big, huge, giant much.
CLICK HERE TO LAUNCH VIDEO
Or, you may be able to play it straight from here. I prefer you try the YouTube link because it keeps track of how many times a video is viewed, but I know it can be troublesome (and vice versa as it pertains to playing videos straight from Blogger).