I am so tired from crying. I am physically and emotionally drained. Today I sat at Ty's bedside in the PICU begging God to stop your suffering, even if that means we have to let you go. I have done this several times before. After watching Ty get beat up and knocked out time and time again over two years, I can't even count how many times I have had this conversation with God. Both Lou and I talk about this all the time. Of course, we will never stop fighting for you. Of course we want you to live, to be with us. Of course. But, if it means you are hurting all the time. If it means you won't live a happy life, then what are we fighting for?
We had another very difficult conversation with Ty's neurosurgeon today. Let me back up to yesterday.
Last I posted, we were in urgent care. Ty's breathing and congestion wasn't improving and he tested negative for any common viruses or bacterias like the flu or the common cold. His eyes were crossed. That almost always indicates intracranial pressure - and that often means another shunt malfunction. Well, the CT indeed showed Ty was suffering from hydrocephalus again. Lou and I were at the end of our ropes. We insisted on an MRI before making any more decisions about shunt surgery (not an easy accomplishment in the middle of the night on the weekend, but if you push hard enough it happens). As of today, the results are not what we hoped for, but they are still ambiguous enough that we are choosing to consider it "inconclusive" until the regular team is in tomorrow. They are familiar with Ty's scans, the necrosis that took place in March/April, and they are better equipped to differentiate between tumor and necrotic tissue. However, our neurosurgeon is concerned that he may see new tumor growth in the brainstem area (but not 100% certain).
That led us to another conversation in a conference room about what we should do. Just imagine this. He was so gentle in explaining what Ty's near future may hold, but no matter how it is worded, we may face some of the most painful scenarios imaginable for any parent. If there IS new tumor growth, we can decide to either 1) leave the shunt as it is and allow the hydrocephalus to take over. This means he would end up sleeping more and more with each passing day, hopefully without much pain, until he soon doesn't wake up. 2) we can fix the shunt knowing that Ty's breathing will probably get worse and worse because of the tumor until he ultimately cannot breathe without a ventilator (something Lou and I are against) or 3) perhaps he can perform a biopsy through Ty's nose (another painful surgery) to see if there are any brain tumor vaccine trials that can use a tumor tissue sample to pursue a vaccine (this alternative is a stretch - I have done a lot of research with the help of a friend and I don't think vaccines have been successful when tumor is present - it is more of a maintenance care alternative to chemotherapy).
My mind and my actions have been racing out of control today. One minute I'm standing at the East River thinking about how nice it would be to jump in and swim away for a while. The next I am yelling to myself as I walk down the city streets. Then I'm sitting in church drenched with tears telling God how I trust him (I always have, but that doesn't always help the pain). I laid in bed with Ty for an hour, whispering in his ear that he can get better. I made him a car out of cardboard and hospital tape so we can cover it with candy. I feel certain he is going to die, then minutes later I am certain that he won't. I feel like we may even walk out of the meeting tomorrow after hearing the worst, and Ty will still do otherwise just like he's done in the past. Prove everyone wrong. One thing is for sure. I am not giving up hope, don't worry.
What drives me crazy is this. I have seen Ty recover in ways that can ONLY be described as miraculous, and Ty's doctors will back me up on this. If Ty is going to do this... if he is going to beat the odds and be the miracle... then let him. If not? Why have those amazing feats been granted if they only ended up causing him more pain and suffering over these past two years. Why was he saved in December 2010 when he was diagnosed with lepto-meningeal disease (which is always terminal), in Feb. 2011 when his brainstem tumor grew back larger than the original, in June 2011 when he had two new tumors the size of golf balls in his Cerebellum, in December 2011 when he suffered a stroke-like brain bleed and in April 2012 when he was suffering from radiation necrosis that is supposed to be incurable and irreversible??? He has come so far. I can't imagine the "plan" is for him to die in the end. I just can't. But today, knowing what I know, I began to try and accept that possibility again.
What would I do without him? Ty and me... we are connected... one in the same. We are together every minute of every day. He is 99% of me and he is everything that makes me who I am. Please pray for him. Please share his story.