I'm sorry about the foul language, but there's really no other way to express how unbelievable this is right now. Lou and I are waiting for Ty to get out of surgery. As I mentioned, we had growing concern over his crossed eyes and his head pain. Today we finally decided it was time to go into MSKCC for an exam and possibly another MRI.
Throughout the exam, it was more than obvious that his neuro-oncologist was concerned. We weren't surprised. Then, during the MRI the technicians stopped in the middle and told me they were just taking Ty out for a quick exam. In walked a neuro-surgery resident with whom we are quite familiar. He wanted to make sure Ty was responsive, and he asked me several questions about recent symptoms. After the quick Q&A, he told me that they have already seen the first few images from Ty's MRI and that his ventricles were clearly enlarged. They were concerned and would likely do surgery immediately to replace the shunt.
POOR TY!! Before I continue, I just need to make a statement about Ty's neurosurgeon. We would never, ever blame him or anyone on his team for the number of complications that Ty has had with his shunt. Nor would we blame his oncologist for any other treatment related issues Ty has experienced over the past year and half. Ty's doctors are amazing. They are vested. And they are doing everything they can to help our baby boy. Ty is simply a unique case with a lot of complications and we are happy that he is in such great hands. They believe the secondary clog in the shunt tubing is due to an increased level of proteins in his CSF fluid. This is not something that can be treated, however his neurosurgeon is going to try a different kind of valve to see if it helps prevent additional clogs. Lou and I are also going to try pumping the valve every day to try and keep it flowing freely from now on... which is not a proven method but worth a try.
I've been crying a lot today because of all my poor baby has to go through. I am sitting in his room at the Pediatric Observation Unit in MSKCC (one step away from going to the PICU across the street) and I am just praying that the tubing that runs from the valve at the top of Ty's head into his abdomen doesn't need to be replaced. The process for snaking that tube from the shunt valve down to his belly is actually pretty barbaric and it would make his recovery much more painful. They use a metal rod to snake the tubing under his skin from an incision in his abdomen all the way up to the incision on the top of his head. It causes a lot of bruising and discomfort, as you can imagine.
On the other hand, I am a little relieved that his latest issues are shunt related because at least I can say he doesn't have a random new brain tumor (which is what I live in fear of on a daily basis). Not a day goes by that I don't worry about recurrence. I thought it was totally unbelievable that Ty needed his seventh shunt revision just under 4 weeks ago. I was flabbergasted. I prayed with all my heart that it would be his last surgery for the rest of his life. Today I am barely surprised that we are here again. I totally accept it. Of course I am beyond sad for him, but I am also exhausted, I am drained, I am weak, and I'm not sure if I have the fight in me right now. I'm glad I don't need it - that what we are dealing with today is something painful but fixable. I need to get myself together if I'm gonna keep putting one foot in front of another on this never-ending journey. Thank you for sticking with me and sending me your endless encouragement. I feel your love and it helps me so much.
Gavin is also home with pink eye and I was just informed that he threw up his dinner. He probably has a fever. I feel very guilty for not being there. This is the second time he's been sick like this when I've been in the hospital with Ty. I want to be the one with my palms on his forehead, stroking his hair and whispering "shhhhh." It makes me so mad that even the more difficult mommy moments with Gavin are being robbed from me. I should be there! I took this picture yesterday morning when he was getting a physical at our favorite pediatricians office. Maybe he picked up a little something while he was there. He was totally obsessed with the Rex doll they had in the waiting area. You should have seen the fit he threw when I made him return it when we were leaving. You would think the kid doesn't have 1,000 Toy Story toys of his own. :) My handsome boy.
Tonight Lou made a comment that is so true. We grabbed dinner at one of our favorite places while Ty was in surgery (it sounds terrible when I actually put that in writing), and our conversation went something like this:
LOU: Ty can't even enjoy this time being cancer free. He never gets a break.
ME: That's not true, the time between June and December last year was pure heaven.
LOU: Yeah, but then he had a %$*^ing brain bleed that left him paralyzed on his left side.
ME: Yeah, but remember how well he was recovering? That wasn't such a big deal because he started to get better.
LOU: Not a big deal?? Our four-year old son had what was essentially the same thing as a stroke. To any other parent who hasn't been through what we have, that would be the most devastating thing to ever imagine their child suffering through! He was left friggin' paralysed on one side of his body. It's a really big deal!! But wait, it gets worse. Just when he starts to get better, he suffers a post-radiation lesion that takes out the other side even worse. Now he is completely weak from top to bottom and can't even play with his toys.
He's right. When I think of what Ty has been through in the past six months - in the perspective that he is currently cancer free and still suffering like this - I can't help but realize how incredibly messed up it is. When is this going to stop? He's an incredible, deserving little boy. Lou and I are not bad people. That doesn't mean we're amazing, that's for sure, we're far from perfect but no one deserves this. All I can do is channel all of my energy into prayers for healing and strength. It helps me get through all of my moments of anger and frustration. During Ty's MRI today, when I was in the middle of praying for Ty's full recovery (I was imagining him as a young man walking), at that moment he bent his knees and lifted his legs higher than I have seen in a very long time. It was an involuntary cramp and it bothered him a little (we had to pause the MRI and restart that sequence because he shouldn't move during the imaging) but regardless, I believe that it was also a sign that he will get stronger......
...... I wrote the paragraphs above while waiting for Ty to get out of surgery. My post was interrupted when he was returned to the room faster than we expected and I have been at his beck-and-call for the past four hours since. He is doing phenomenal. His surgery went well. The valve and the shorter tube that was clogged from the burr hole in the skull to the valve was replaced, but the tubing that runs all the way into his abdomen was okay - which is great news. No incision in the belly and much less bruising than if the entire piece was replaced. He is wide awake and drinking tons of apple juice. He told me that his head feels better and he's asking about when we can go home. This kid! I couldn't love him more. Here's a photo of the latest incision. The stitching from his previous surgery was still there so the skin was rather thin and will probably require a longer healing process this time around.
His neurosurgeon understands how important it is for us to get Ty home as soon as possible for his own mental health (and ours). As long as he remains stable - right now his vitals are perfect - then we can go home tomorrow afternoon. Right now it's 2 in the morning, Ty is wide awake, and I feel like I can barely keep my eyes open. It's going to be a loooong night, but I keep clinging onto the hope that we can head out of here in about 12 hours. I can do another 12 hours.
When we were on our way to the hospital, Ty was crying and he said that he was going to miss all of his stuff. I told him that we brought his bag of stuff, but he cried even louder saying he was going to miss all of his other stuff. When we were halfway here he said "I miss my nana blankie already." I wish I remembered to bring that. He also asked me and Lou to tell the doctor that he wants to still be on vacation. The first people he asked to talk to after he woke up was Gavin and Mely. He's so sweet. I can't wait to get him out of here.