Surgery - the first steps in a marathon

Ty’s first major surgery was on a Monday.  It was also the first day I ever posted to his blog.  When we left the hospital after we learned of the tumor, we were told to take our time in selecting a neurosurgeon.  It was suggested that we aim for a tumor debulking and resection within the next six weeks. 

The cancer thought otherwise.  We were rushed into surgery just 12 days later.  My perfect baby who had no neurological issues suddenly began slurring his speech.  Then he couldn’t use a sippy cup and his mouth was feeling funny (or as Ty was saying, “my mouf peel punny.  My mouf not work.”)  The head pain began to affect him during the daytime, too, and it became unbearable.  After meeting with several renowned neurosurgeons, we selected the only one who provided us with a confident, less-invasive endoscopic approach. 

The other neurosurgeons were looking to cut through several facial bones in order to get the best access to the tumor (the tip of the clivus, where his tumor was growing, is located in the lower center of the head, so going through the face is less dangerous to the rest of his brain/spinal cord than if they approached it from behind).  It certainly was hard for us to stomach the idea of a “La Forte” incision which is a trans facial approach.  A horizontal incision is made above the top teeth and across the underside of the nose, then the upper and lower  mouth is dropped down with the jaw, if that makes any sense, to provide easy access to the tumor.  It also involves the “degloving” of the skin on the face.  Can you imagine listening to surgeons explaining how they would lift the skin from your tow-headed toddlers face?  That just didn’t sit well with us.  The neurosurgeon at Cohen’s Children’s Hospital was confident that he could have the same or better success by going right through our baby boy’s tiny nostrils and his throat simultaneously (endoscopically) and removing the tumor piece by piece.  The approach would provide excellent access to the tumor in almost its entirety, and the healing time should be much easier.  HA!  But I’ll save the sarcastic laugh for another blog post about his brutal recovery during this month of reflecting.

The day before surgery is a blur to me.  I know that tons of people came by to visit with us in the hospital.  So many that we had to reserve a conference room in the hallway and order pizzas throughout the day.  Ty was in all his glory, having fun and being flooded with gifts.  Lou and I were also so happy to have everyone there, but even more anxious  to have them gone and get this surgery started.  Here is the picture of Ty that day, wearing the stickers that are used to map out the surgery beforehand.  They were placed on his head the day before surgery in advance of his CT scan to map out the area (yes, as in creating a GPS map of his brain to guide the endoscope during surgery).  He had to keep them on overnight and until surgery was over.   Ty was a trooper, of course, he had no idea what was in store for him just hours later. 

That night was when Ty fell in love with chocolate.  At 2 years, 10 months, he had never eaten a chocolate bar… but on the eve of major neurosurgery I guess Lou and I threw caution to the wind.  Nana and Grandma were having so much fun watching Ty in heaven; chocolate ALL OVER his face.  Lou, though, turned his head to me and I immediately saw the heartache in his eyes.  We exchanged a look of sorrow because we knew he was such a mess not because he was being silly, but because his oral motor skills were deteriorating. 

Dropping him off in the OR is actually a blur of a memory.  I know I felt sick and dizzy with sheer anxiety.  It was my first time wearing a “bunny suit” and walking into the huge, white, sterile room.  The equipment they were going to use was jarring and there was a young guy telling me about the various machines with excitement, but all I could do was stare at him and wonder if he was going to be touching Ty – he seemed way too enthused.  I don’t remember Ty having his eyes open or closed or if he was speaking to me before they put him under.  There was a woman, I can’t picture her at all, but she was a nurse who was essentially in charge of Ty and she comforted me and made me feel somewhat okay before ushering me out the door. The anesthesiologist reminded me of the eccentric rebel doctor from the drama shows like ER because of the funny cap he wore and his long, graying ponytail.  Everyone was kind, I’m sure.  I felt like I was in a bubble, living someone else's life.  I don't think I cried, I was probably too numb.  I just couldn’t wait for them to fix Ty and for Ty to start getting better. 

The surgery was 13 hours long.  We had the greatest support in the world.  Of course our families were there.  All of my girlfriends -- my best girls travelled in from all over the country -- were there for me, too.  Lou had all of his friends in and out all day.  We sat in the ugly lobby.  We talked and read magazines.  We just waited and waited.  At the time, we didn’t even know whether or not the tumor was benign or malignant.  When he came out of surgery we were able to see him in recovery but he was still asleep.  He had an NG tube in his nose – I wasn’t expecting that.  He looked so hurt.  He was awake but his mind was elsewhere.  I wondered how bad it must look inside that beautiful head of his.  All I could do was hug my family and friends and cry my eyes out at the sight of him.  That’s what we all did. Then we said goodnight and Lou and I were allowed to escort him to the PICU.  He was going to be unconscious all night, so eventually we walked over to the Ronald McDonald house until morning.

I do remember that our pediatrician from Long Beach drove all the way to sit with us that night, post surgery.  I don’t know what time it was, but it was August and it was dark outside by the time Ty’s surgery was complete.  He loved Ty and wanted to hear what the surgeon had to say.  Thank you, Dr. Matt Cohen.  When I think about that now I realize how incredibly kind that was. 

The first thing the surgeon told us was that they sent a portion of the tumor to the lab during surgery and it was found to be highly malignant.  That meant he was slightly less aggressive in getting as the last bit of tumor because it was in a very dangerous spot (hypoglossal canal, pressing on cranial nerves) and because he knew chemotherapy was an option.  He told us the good news is that highly malignant tumors respond very well to chemo.

I remember feeling such an incredible sense of hope when he told us that.  As if… “Good.  Thank God that’s over with.  Now we can just do some chemo and kill the rest of this cancer.”  No matter how many people warned us not to plan for anything, Lou and I had this attitude of “well, treatment is either gonna work or it’s not.”  Never did we expect so many twists and turns on this journey.  When we met with the neurosurgeon at NYU he told us that surgery is only our first few steps in running the marathon ahead of us.  How right he was!  Those words echo in my ear every day as I wonder "how much more?".

And now, for today’s update on Ty… and how fitting it is.  Right now, Ty sits in a hospital bed awaiting his 20th surgery.  The stitches from his shunt revision in July never healed properly and the skin is so thin his wound began to stretch open rather than heal closed.  They need to move the shunt valve tomorrow and stitch him back up.  We expect to be discharged on Friday.  Here is a photo before our car ride in.  We thought it was going to be a quick day in clinic.  I mentioned the wound to see if there was an antibiotic cream they could recommend.  Never did I expect another surgery would be in order.  After all the ups and downs we’ve experienced, I probably should have known.  Thank you all for loving Ty and following his story.  More tomorrow.