Tuesday, January 17, 2012

A New Year's Update

Geez.  We're already more than half way through January and I realized that I hadn't posted in a while.  So, first off, Happy New Year.  Our family spent a quiet new year's at home without much hoopla.  The euphoria of the holidays has given way to the dreariness of a snow-less winter.


Weather aside, the last couple  of weeks have been pretty difficult.  Isabella has steadily declined.  She now finds it very difficult to stand up, much less walk.  We are now looking into a pediatric wheelchair since she has outgrown the old toddler strollers that we have been using.  She also cannot talk aside from some slight whimpering or mumbling.  Sometimes, with some great effort, she may say a word, but usually, it's just a cry of frustration as we try to guess what she's trying to say.  It breaks me up to think that I'll never hear her voice again.  She no longer has any control of her bladder and needs to wear a pull-up at all times.  Her left eye has started to droop, and with the weakness on the right side of her face, her right eye stays open wider than her left eye giving her an eerie and asymmetric stare.  Her left hand has gotten weaker as well as it now shakes when she holds a glass of water.  If you recall from one of my first posts, the first sign that we saw before Isabella was diagnosed was her hand trembled trying to drink a glass of water.  Along with increased weakness of her left leg, this probably indicates tumor spread to the other hemisphere of her brain.

 Up until the last couple of days, her mood has been decent, and she would still laugh and hum along with a song.  But that stopped just recently.  I'm not sure if that is because of the medicine and supplements that we are giving her of if she is just starting to feel more and more tired.  Her overall energy level is gone as she no longer has the strength or desire to leave  the couch.  Again, I can't stand the thought of never hearing her laugh again.  

We're still on a low dose of chemotherapy along with a bunch of naturopathic supplements.  But honestly, I don't think that traditional medicine has much more to offer.  It really is agonizing to watch Isabella have to go through all this.  It's also tough on the rest of the family as we try just to make it through each day.  I can't even put into words what Julianne is feeling, and it's certainly not fair to either Annalise or Nathaniel as they try to have a normal childhood.

 I wish I had better news to report, but I just wanted to get something out there.  I know a lot of people are still following and don't want to "bug" me for updates, but know that we do appreciate the support.  Thank you for reading.

11 comments:

  1. Hi Isabella, We are still praying dedicatedly to your full recovery. I read an article on Yahoo last week about a little girl who said NEVER EVER GIVE UP! Remember that always! We love you and think of you everyday!

    Love, Lawrence, Mariza, Nathan, and Larisa

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  2. Still following, still praying, still hoping. I wish I could send you strength. We are all thinking of your family. It's wonderful that you take the time to post.

    So happy that you were able to spend a quiet family holiday together at home.

    Laryssa

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  3. Thank you for what must have been a most difficult update. Not only are we still with you but you have no idea how many family and friends ask for updates and tell me they are still keeping Isabella in their prayers from our fb prayer requests. Stay strong and remember that we are only a phone call away.

    Suzy Buffone

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  4. Thank you so much for maintaining this blog, as difficult as it is sometimes. You have no idea how many lives and hearts your family has touched with your grace and strength through all of this... people you've never met, like me. Isabella's strength and determination have been an inspiration, and Roneil has taught me plenty about what it means to be a kind, loving, and selfless father. May God strengthen all of you.

    Matt

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  5. Always praying for you all, for healing, strength, peace. Thank you for keeping up with the blog even though an update like that must be so hard to write. Whatever and whenever you need, please call - Kate Morin

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  6. Michelle and I pray for Isabella every night. Such a difficult battle you all are fighting. Please know you all are in our hearts and prayers for comfort, strength and peace. God Bless you all.
    Lorraine Busardo

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  7. As I have said before, thank you for sharing with us even in the darkest times. I carry your family in my heart always and in my prayers. Whatever you all need, whenever you may need it, just ask.

    Love,

    Marybeth Darcy and family

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  8. Thank you for sharing with us through the good periods and the rough times. We know it has to be extremely difficult for everyone and we hope you know your baseball buddies are praying for the family to have the strength to handle each day.
    We enjoyed having Isabella and the whole family at our games and all of you demonstrate what a remarkable family you are.

    Dave

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  9. Isabella stays in our thoughts and prayers. God bless you all.
    Tammy Maldonado

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  10. Isabella, You are the most incredible kid I've never met. I think of you day in and day out. I admire you and want you to know just how amazing you are. You're blessed to have such a wonderful Mom and Dad too. They will do their best to read your mind and give you everything you need. Your Mom delivered my baby 6 years ago and she is an amazing person too. I've never met you or posted before, but wanted you to know how I feel. We all love you Isabella and are very proud of you. You have touched the lives of MORE people than you will ever know. XOXO Ginger

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  11. Roneil and Julianne, this blog has kept me in touch with you in good times and in bad. Thank you so much for your courage and faithfulness. Isabella is a beautiful little girl and you have given ad recieved love in the most beautiful ways these past years of illness. My prayers remain for her and you and the children. God bless you with His strength and love. Pat Postiglione

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