Yesterday was the worst day of our lives. Considering all we've been through, I never cried so much or felt more pain than I did over the last 24 hours. When we arrived at the hospital on Sunday, Ty was still relatively okay. He was able to speak (not very well, but we could understand him) and he even ate a chicken nugget and a couple of French fries on our way in. We knew there was likely an additional hemorrhage pressing on his brainstem that was causing his increasingly slurred speech and overall weakness, but we thought with another steroid boost and close observation at the hospital that he would be feeling better in no time.
By the time Ty woke up on Monday morning, he was completely incapacitated with uncontrollable shaking and severe lethargy. He was unable to respond to commands, he had severe pain and he was wetting the bed. He spent the majority of the last 24 hours completely unconscious and unresponsive. He was even able to go in for an MRI without anesthesia. As a result, our doctors at Sloan Kettering told us that treatment is no longer an option and that we reached the end of the road. We discussed, in detail, taking him home and what we can expect over the course of the next few days/weeks. Obviously, no words can describe what we felt.
Then, the neurosurgery team at Cornell/New York Presbyterian presented us with a surgical option, and Lou and I were faced with a decision that no parent should ever have to face. On one hand, there is hope… there is a chance. On the other hand, it is a long shot and we don't want to force any additional pain and suffering on our baby boy. When is enough, enough?
So, the decision was whether we take him home for what is expected to be a relatively pain free and peaceful passing, or do we keep fighting knowing that any number of things could go wrong at any point (something we are all too familiar with). It was simply too much to take in yesterday so we told everyone that we needed to sleep on it, to talk it over amongst ourselves and to come to a decision in the morning. We are currently in the Pediatric ICU at New York Presbyterian hospital.
Less than an hour ago, I was sleeping next to Ty and he started to moan and stir. I asked him if he was awake, and he clearly said "yeah". He started crying and I asked him if he had pain and he clearly answered "yes," once more. I hit the ceiling in excitement/panic, called his nurse for some pain meds, and began asking him questions. He was responsive! He was talking to me! He cracked a smile!
After a while, Lou and I began to explain to Ty that we had a big decision to make. We needed to know if he still wanted to beat the cancer up. We told him that we love him and we know how hard he's been fighting. We know he's been in a lot of pain, and that if we keep fighting it would mean more pain and more time in the hospital. Then we asked him if we should keep fighting and Ty said "yes." We asked him if he wants to beat the cancer up and he said "yes."
So, we are going to keep fighting the fight… at least for now. Ty is going to have another tumor resection on Thursday with the goal of going straight to Boston for proton beam radiation treatment afterward. Obviously, we don't know how this will turn out, but we know we have an excellent team of confident surgeons, and we know that God will continue to guide us as he has done every step of the way so far. Of course, we are terrified beyond words.
I just overheard Lou talking with Ty and asking him if he remembers anything about yesterday. He asked if he remembered seeing all of his grandparents in the room or holding still when he got his "picture taken." Ty said "no," and that is good. I am relieved to know that days like this will not haunt him as they do me. He deserves to be happy and think three-year old thoughts, like what's on the next page of his favorite book that Daddy is reading him.