We will be meeting with Ty's neurosurgeon tomorrow at 9AM to find out what, if any, our options are. He reviewed Ty's MRI results and told us that he believes that what appears in his Cerebellum is mostly tumor mass, with some bleeding captured inside. The Cisplatin simply didn't work. It's so hard to believe, too, because Ty's best weeks in 6 months were while he was on that medicine. I guess it just didn't knock him down hard enough. His doctors explained that it came on so suddenly because the brain has an amazing way of compensating for any deficits, until finally it is forced to succumb to the issue. Ty's brain was surprisingly good at finding ways to continue functioning normally, even when the tumor was growing five times in size. Then it all came tumbling down on us in a matter of hours. By the time we were settled into a room last night, Ty was completely compromised. Unable to speak, barely able to breathe, severely agitated and unable to control his own arm and leg movements. I was dying inside because I simply couldn't understand what he wanted and I felt so useless. He kept reaching for me, crying to me, hitting me, screaming in my ears and pushing me but I just couldn't figure out what to do to help him calm down. To comfort him. That is the worst feeling in the world... to feel so useless when you want so desperately to help.
My love/hate relationship with steroids continues. They saved his life again last night. His breathing was finally under control around 5 or 6AM, thank God. If the swelling in his brain wasn't reduced, we were told he would end up on a ventilator because his muscles would eventually be too weak to keep breathing at such a heavy rate. His speech also improved (although it is still difficult to understand him, we are communicating again). In fact, today he was in his bed hysterical laughing over bubbles and singing Spider Man songs. I don't know how he does it, but he always manages to keep his spirits up. It certainly helps that our entire family was here visiting, taking turns entertaining him in every silly way imaginable. Ty is just so loved. Even the people at the hospital are in love. Everyone remembers him, even when I have no idea who they are I hear "Hi Ty's Mommy! How's Ty?"
The steroids brought back his appetite for the first time in months, but we are taking it slow and only allowing milk and juice until we're more confident in his swallowing. So, for a kid that hasn't had a single thing to drink with the exception of a few sips of water four days ago, the three cartons of milk and four juiceboxes he drank today are pretty impressive! And the night is still young. I don't see any sleep in our future with the way he is behaving. At least I feel like a normal mom to a normal three year old right now because he is driving me totally nuts! All I want to do is snuggle him all up and sleep with him nuzzled next to me, but the steroids have turned him into a crazy and demanding little boy who sleeps in fifteen minute intervals and wakes up cranky.
|Ty before bedtime tonight. Not that there will be any sleeping going on. He's gonna party all nite:)|
I had a moment of panic this morning. The only thing I could think of doing was running to the church across the street. I must have looked totally crazy in my pajama top and unbrushed hair, out of breath with tears streaming down my face.
I was thinking about when Ty was first diagnosed... I took the boys for a walk around my neighborhood in Long Beach (where I lived at the time). Of course, they fell asleep and my feet led me to our local church by the ocean. When I stepped inside the quiet, still darkness felt so calming. It was cool and damp and I felt my head clear for the first time in days. I lit a candle, I prayed, I cried, and afterward I felt so much better. I wasn't given any answers but I was somehow able to stop contemplating the why and I left there feeling closer to God. I was able to accept and move forward.
Lou just recently took me to the church that I ran off to this morning. It is so beautiful inside, but the last time I was there I remember feeling empty and alone. I actually looked around the church searching high and low, quietly asking "are You here?" During this painful journey, we have faced blow after blow after blow. Somehow, I haven't yet gotten angry at God, but I'm afraid that day will come if things don't work out the way I need them to work out. If we end up losing Ty. Then every time I start to feel betrayed, I look at my babies and I am humbled. I am beyond grateful. I hope I can hold onto this always, no matter where this life takes me.
Today I just needed to find some solace at church, for my own sanity. I was running there hoping to find comfort and when I arrived I was surprisingly approached by a priest immediately. That never happened to me before and I fell into hysterics. As soon as he sat down in the pew next to me I hugged him and cried out, "I'm so glad you're here!" It wasn't something I would normally do, but Father Jordan was so kind and caring. He brought me into his office and provided me guidance. The only thing that haunts me is his response to the way I am clinging onto hope, and the way I continue to beg for a miracle. When I asked him what I need to do to help Ty be chosen, he simply advised me to continue being his mother and to walk him to the gates of heaven. Believe me, I know he meant well. I am not upset with that advice. But I am not ready to accept it yet, either. And if I'm walking my son to the gates, I don't think I can just send him off alone, turn around and return without him. I would want to go with him. Gavin is the only thing that keeps me here in that scenario.
Before Ty got sick, I would stare at him sleeping and think about how lucky I am. How I could NEVER IMAGINE anything bad happening to him. I would never be able to deal with something like that. No way. Thank God my family was healthy and happy, because I just couldn't imagine.
There's no doubt that I have learned so much from this experience and I am forever changed. But, I was better prepared mentally to accept losing my son in December when we first went home on hospice care than I am now. Now I am frantic, holding onto any glimmer of hope with every tiny piece of my existence. I asked Father Jordan his opinion on why God would save him at that time, with what was truly a miraculous healing in my opinion, only to have him continue suffering for months and months if he isn't meant to be cured? He said perhaps there was more for me and Lou to learn. I don't know about that. I just don't get it. The only answer I can think of that makes any sense is that Ty has been brought to this place, facing yet another impossible hurdle, so he can continue to amaze people with his strength and prove that miracles to happen. Don't you think so? I don't care if I look like a fool. You can read this and feel sorry for me because I am unrealistic, but I don't want to lose hope and I don't want to cry anymore. Not unless all hope is lost - and at least for tonight, that is not the case.
Before I left the church, I said a prayer. I asked for today's MRI to at least provide us with options. From the text messages we received tonight, it sounds like that's exactly what we will be discussing tomorrow morning. Options. Please join me in praying that Lou and I are able to weigh the options and make the right decision for our baby boy.