Wednesday, January 19, 2011

Another emergency trip to the hospital - Ty is recovering well in PICU

Just a quick recap of the craziness that has resulted over the past few days...

Thursday - Trip to MSKCC for an MRI.  Results were very promising!  What was believed to be progressive disease up and down his spine was actually diminishing.  It's going away!  The docs are baffled and we are on our knees in thanks.

Friday - Ty becomes so lethargic, he naps all day.  By the evening, he is in out and of consciousness and wets the bed.  We rush him to the hospital, barely able to keep him from slipping into a coma on the way in.  As we suspected, his intracranial pressure (ICP) was dangerously high, causing increased hydrocephalus.  His shunt was replaced in an emergency surgery to a programmable valve that can be adjusted according to his ICP.  The docs believe we will see vast improvements in his pain, his equilibrium, etc., over the next few days.

Saturday - We are discharged.  Ty seems to be doing well, but he still has a lot of pain.  We're told it is going to take time to adjust to the new setting on the shunt, to we should go home and give it a day or so.

Monday - We return to the hospital for a CT scan because Ty's pain remains significant.  The scan shows little improvement.  The team decides to dial down his shunt a bit, so it drains easier.  We leave after four hours during the height of rush hour.  An hour into the car ride, Ty begins screaming out in pain.  He begins saying that he feels sick.  I pull over with my hazards, administer meds and begin rushing home at 80 miles per hour.  He vomits all over the place several times on our way back. We talk to his surgeon who explains that he again needs to adjust to the new setting because he may be overdraining.  That we should give it a day or so and lay him down so he is most comfortable.

Monday Night/Tuesday morning (3AM) - Ty is sleeping, but his breathing is VERY labored!  When we wake him, he complains that his mouth feels funny.  He lost his ability to drink from his sippy cup.  His speech is very slurred.  His pain is out of control.  There is a major ice storm.  We leave for the hospital again a couple of hours later.  He is admitted immediately, another CT scan shows slight improvement in his ventricles (so his shunt is working well at this setting) but now his original tumor site shows a very dangerous mass that appears to be caused by ruptured blood vessels.  Ty suffered a similar bleed at the tumor site in October while being treated with chemo, but that was believed to be a result of the tumor dying.  This time we are told the bleed is likely the result of new tumor activity/growth due to the fact that we haven't been able to continue with Ty's chemo regimen since early November (infection, shunt complications, suspected lepto-meningial disease... I could go on about the various complications...).

So, now it's Wednesday.  The tumor board met this afternoon to discuss Ty - AGAIN.  The good news is, there are options and we are in the early stages of discussing a course of action with the intent to aim for a cure (as opposed to previous discussions that revolved around palliative care).  The most recent scans show the suspected disease in his spine continues to disappear, and that in itself is a miracle.  The doctors have absolutely no explanation as to why a lesion on his cervical spine #5 progressed so quickly in 12 days that they doubted he would survive Christmas, yet yesterday's scan shows that same lesion to be practically gone.  What a kick in the face that the minute we reach for the champagne; a blood vessel in his original tumor explodes and puts him in what we are told is a critical state where the if the bleed continues it will be catastrophic.  So far, he is stable and nothing is happening.  They gave him a huge boost in steroids and he is talking well and really doing great.  We are waiting it out in the PICU across the street from MSK and if he continues to do well over 48 hours the risk of another bleed will be much, much lower.  In fact, they will move us to a step down unit tomorrow, observe through the weekend and look to send us home over the weekend. 

We are told that there are several options to consider, including surgery, more chemo and radiation.  We need to discuss with all of the individual teams over the course of the next week or so and make a decision on next steps by mid-week next week because we don't want to waste anymore time.  I don't like any of these options for various reasons, but we don't have a choice... we have to do something.

Lou and I are feeling like we are at the end of our ropes, but we will find a way to hold on.  It's as if we have come full circle and we are having similar conversations around chemo and surgery that we had with various medical teams back in August when he was first diagnosed.  The tumor isn't as bad as it was when we started out, but I get the idea it is getting there.  I don't know how much of this we can put Ty through again - but at the same time we don't want to dismiss any options if it can save our boy.  We just don't know how we are going to get through this, but we've said that before and we pulled through.  It's Ty's strength that inspires us and gets us up and over each and every hill - no matter how steep or how high.  We keep the faith, we stare at his sleeping face for hours on end, and we are filled with hope and love.  It is a powerful feeling and we will be okay, thanks to the strength of our little fighter. 

11 comments:

  1. Continued prayers here everyday and night for you, Lou and Ty.

    "I am not afraid of tomorrow, for I have seen yesterday and I love today" - William Allen White

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  2. Hang in there Cindy and Lou. Love and positive thoughts continue from IL. Your are all so strong. I pray for your ability to wade through all of the information so you can make the best decisions for Ty's continued progress.

    xoxoxoxo,
    Maria

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  3. Sending you love, prayers and every last bit of energy to help you to continue fighting this battle- you are a warrior mom and an inspiration- and Ty is just precious!

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  4. We are praying hard for your little boy. He's always in our thoughts and prayers.

    Just remember, you were hand picked for Ty. You are special people and stronger than you think. Not many people could get through 1 day of what you're going through, let alone months.

    Hang in there. Positive thoughts and strength coming your way...for HOWEVER long you need it. Promise.

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  5. Hi Lou & Cindy,

    Lou, even though it has been a long time since we actually spoke, I just wanted to let you know that myself and the entire DelGrosso family have Ty and the family in our thoughts and prayers, everyday. Some of my best memories growing up were hanging out with you in Lake Casse. When I think about it, it seems like yesterday. As you know, we've been through some tough times as kids, and if you recall, our circle of pals were always there for each other, no matter what. Even though we lost touch over the years, I want you to know that I am thinking and praying for you & the family, each and every day.

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  6. I don't know how you will get through this either but I know you will. You are the best parents Ty could ever have. I wish this would all end and Ty would be a healthy little boy. I still hold him in my mind as a healthy little boy and I still believe that anything can happen in our favor. I'm sorry you are being put through the ringer. It tears me up inside. All my love is with you always. xoxoxoxo

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  7. Cindy, thinking of you always.. I continue to say this time and again, your strength is admirable. Ty is amazing and he will pull through. thinking of you always.
    Tina

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  8. Hold strong Cindy and Lou and know that you and Ty are always in our thoughts and prayers. You guys have already shown such incredible strength. I know that you will continue to find more as you fight the most important battle in the world.

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  9. OMG!
    Well, let's call this the second stage to recovery. It all sounds very complicated and uneasy for all of you. I am amazed that they send you home after such complicated procedures.

    Thank goodness you are soooo in top of every detail. You definitely have a league of guardian angels by your side. We hope God will guide you into making the best decision for the coming days.

    In reference to your rope feeling, Franklin D. Roosevelt said: "When you come to the end of your rope, tie a knot and hang on." My dad always say: "Don't hang, swing, it makes things happen." You guys are living examples of it in a day by day swinging process.

    The important thing now is to never give up hope. Remember you have gain a lot; you have won some battles, but there is a war to win and your soldier is giving his very best with you by his side. He is a knight!

    We will CONTINUE as ALWAYS sending you our best hopes, prayers, love and patience your way. This is no easy road, but know you all are very much LOVED.

    A Jewish Proverb: I ask not for a lighter burden, but for broader shoulders.
    All of your friends and family shoulders are here to make yours a Lou's broader and stronger. Close your eyes and feel them.

    Remember:
    Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel

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  10. Cindy and Lou;
    'Yesterday is a memory, tomorrow is a mystery and today is a gift, which is why it is called the present' You live this to the fullest..and give your children all of your being. God bless you. All our love and prayers...we are here for you.
    Ginger

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