Sunday, June 19, 2011

Keep fighting

Can we?  My childhood friend who I love with all my heart recently drove 6 hours with her toddler to visit with me.  She and her husband are simply the best.  She gave me a bracelet that is engraved "Keep Fighting."  I cried when I opened it because it reminded me that this is my fight too.  And Lou's fight.  We are making so many difficult decisions for Ty including whether or not we should give up.  I caught a glimmer of the inscription today while I was feeling very vulnerable and it helped me.  Keep fighting.  I hope we can.

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:)
Are you there, God?
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.

19 comments:

  1. Cindy and Lou, I truly pray that there will be options for Ty! I think you are absolutely right in not accepting the priest's advice and I, too, would try not to lose hope! I am with you in my thoughts, every day!

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  2. I am crying and praying, although I don't even know you... I feel that I do. I have triplets and almost lost one of my sons. I remember a 24 hour period of time of not saying one word to anyone but God. Talking, begging, crying, asking for grace and finally, finally, His will, and that is really all you can do. Keep talking to him and ask Him for help. My heart aches for you more than you can imagine. It is just such an incredibly helpless feeling. You feel as if you've been given this little angel to take care of and watch out for and all of a sudden it's all out of your control and you can do nothing. You can pray, and please continue... SO many people are praying with and for you, and I hope that brings you a speck of peace today. God bless you a million times. My heart hurts so much for you...

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  3. Cindy, you amaze me. I can't believe the boy who I saw just a couple of weeks ago is on the wrong end of this battle. It simply can't be. There has to be options. They have to be wrong. We are in pieces here waiting for news. Please know that Charlie and I are praying like crazy. We love you guys. Love, Rachel

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  4. Cindy - my heart is breaking into a million pieces for you hearing your story. Raw. You are an amazing mOther and I don't think any of is would think you crazy at nOt giving up hope? How could you when he hasn't? He's your son. Your child and the minute we know our kids are on the way, before we even meet them, we instantly switch to mOmmy mode and would do anything to keep our babies safe. No matter what. So, stay strong, keep praying and love your baby. I'm sending you prayers, strength and courage to fight whatever comes your way. Love always, the mccarthy's.

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  5. I pray for a miracle for you every day. All you can do is pray for the same and to ask God to heal Ty. It is so hard when we feel like He doesn't hear us and we wonder where He is at the darkest times of our lives... but He does hear. To say to God - "Your will be done" may be one of the hardest things we can say because what if His will is not ours??? What we do know and we are certain of is that you and Lou have made some pretty amazing decisions over the last few months - decisions that have led you to more time with your son. You are amazing parents with incredible pressure - yet you hold it together and make the hard decisions daily. And we also know that Ty is a fighter. Stronger than any person I know! I am confident that you will make all the right decisions for your son and I pray that your decisions and the will of God lead to a cure. I am in awe of yiou and Lou and my heart breaks for you - but the hope is not lost here and I am sure I can speak for the thousands that read this blog too when I say that. Love and prayers and peace and health to you all!

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  6. Cindy & Lou,
    We are sending you courage and strength.. We are thinking positive thoughts and continue to have hope.
    Prayers are coming your way for Ty and all of you.
    The Ferranti's

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  7. Im sure you're going to hear this over and over...DON'T EVER GIVE UP! You and Lou are incredible parents and allowing us into your lives to go thru this journey with you is incredibley selfless. I'm sitting here bawling and praying with all my might that God'w will is to save our precious Ty.

    I hope you don't mind if I refer to him as "ours" but I have come to love your son (and family) as if they were my own. I will never stop praying for a positive outcome. I will never stop believing that SuperTy can beat this. I wish there was more that I can do but know that your family is ALWAYS in my thoughts.

    Please give our precious little fighter a kiss from all of us. If we could, we would do it ourselves. Please wish Lou the best Fathers Day possible. I know this is not where he would choose to be but I hope that he can have a good day with his boys.

    Praying for positive options with all my love,
    Elaine

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  8. Lou - You are in my thoughts this Father's Day, as Ty has been in my thoughts every day for the past many months. I hope that there is some joy for you both today.

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  10. Cindy & Lou,
    Your strength throughout this whole process is nothing short of amazing.
    The prayers continue for God's will.

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  11. I don't know what to make of this in terms of God and how it makes sense. My best answer is that we do not have the capacity to understand - that we only understand life from our current perspective which is but a sliver of the bigger picture. And though our reality feels like "the reality" - it is not. And things that make us feel sad and miserable here on Earth will not make us feel sad and miserable when we cease to exist here. And though we consider a lifetime to be a looooooong time, it is but a snapshot in our much larger journey.

    It is not foolish to hang onto hope. No matter what the outcome, nor in hindsight will it ever be in vain. That I can promise you! Remember that in all of our confusion and fear and thoughts of negativity, we have our door cracked open for the miracle to come in. This helps me to not feel so confused. We are allowed to feel confused over having hope. It is okay! But in our hearts our desire is strongest for the positive outcome. That is all that matters. Our STRONGEST desire is to not be confused anymore and for Ty to survive. We have nothing to lose by hoping for the best in the face of anything we are experiencing. We are doing a great job and it is so touching that all of us have this hope. We are all sticking together and our cumulative hopes are a force.

    Cindy and Lou I am heartbroken but my door is always cracked open and my heart's strongest desire is bigger than any other thought.

    This is no kind of Father's Day for anybody but I am so grateful for you, Lou, to be Ty's daddy. You are THE BEST. I love you so much.

    Wishing it all bedda,
    Colleen

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  12. Dearest Cindy, I actually stumbled on your blog a few months ago. I put your blog in my favorites on my computer immediately after reading it. I am a mom of 11 and cannot imagine the pain you all must feel. You are so strong and brave... I see where Ty gets it from. I haven't been on in a few days and was so devastated when I read the past few entries. I am bawling as I type. I am also praying, praying for a miracle for that sweet little guy of yours. I feel like he's one of my own. I hope that doesn't sound crazy to you. But as a mom myself I cannot help it. I want to comment on what the preist told you...he is not God only a server of God just as you or I or anyone else. Don't give up NEVER GIVE UP!! Ty has made it thus far and there is a reason for that. There is always hope in any situation...Ty is going to make it. He has to that's all there is to it. You are one strong woman and your son is one tough little guy. When I read the part about pulling off his mask to tell you he didn't cry when the needles went in I just lost it completely. How a three year old could be that strong and brave is just unbelieveable. You are doing everything right Cindy...you and your husband. I will pray and pray for your Ty....continue to stay strong and hopeful. Don't let cancer win!! Please give Ty a great big hug from me and tell him to keep fighting. Because if anybody can do it I know he can. He's not called super Ty for nothing. Love to you all from all of us...Dusty

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  13. Cindy and Lou,

    We love you. Our hearts are broken with this bad news but we will not give up hope and will continue to pray for a miracle with you. You are all so strong and Ty has come so far.
    Much love, Emilio and Tammy and Gabi, Gracie and Dominic

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  14. Dear Cindy,
    I wish I could be more eloquent in my encouragement.... please keep being strong, and do not give up hope, SuperTy needs you to fight with him.
    Lou - Happy Father's Day, you are a great one!
    Love, Betta

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  15. Praying, praying, praying as always for strength, healing and whatever else Ty and your family need . . .

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  16. No matter what never let go of hope, love, faith and thankfulness. No matter what, you are with Ty right now, that is what counts. Every sleepless night, every second spent with him is precious.

    The main reason any of us are with each other is to show love to one another.

    You have gone through rough times in the past, DO NOT LOOSE YOUR HOPE. See the miracle, feel the miracle and be thankful for it.

    We LOVE you soooo much and wish this will pass, but never doubt God is by your side. Inhale, exhale, feel the peace we all are sending your way. These are the tough days that will make you ALL stronger, no matter what. We are all praying for brighter days!

    Remember:
    Until the day when God shall deign to reveal the future to man, all human wisdom is summed up in these two words,--'Wait and hope'.
    Alexandre Dumas

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  17. Cindy-I just looked back at a very important post you made on 12/27/2010....it read "due to the results of the Dec 9th MRI, we may have as little at 4 weeks left with Ty" followed by the a statement you made and I'll quote you, "We will never lose hope"!

    Miracles can and do happen and your son is proof! Ty has been with you for almost 6 months since that post and he has been laughing, hugging, enjoying story time as a family and playing with his brother which proves you should NEVER LOSE HOPE for Ty! Sending prayers, hope and love from MN!

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  18. Cindy and Lou - I have been sitting here for 20 minutes tryingt to find words to comfort yo and encourage you. I want so bad to find the right prayer that God will heal Ty and take your pain away. I wish I could for a moment step into your shoes and help you fight so that you both could have rest. I will NOT stop praying, I will NOT stop begging, I will NOT stop asking for a miracle.

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