Friday, March 11, 2011

Week one completed. Five more to go

Some mornings I look in the mirror and I think I look 100 years old!  This whole situation sucks the life out of me sometimes and I don't have the motivation to fix it by getting my nails done or my hair done because my only priority is to sit at Ty's side 24/7.   In fact, it had been SEVEN months since I had a haircut and the ragged ponytails with crooked glasses that I've been sporting are not the best look for me. J  Then, yesterday I received the best treat!!  A great friend of the family, Liz, came to my house and cut and highlighted my hair.  I feel like a new person!!  Gavin also got his first haircut.  It was down to the middle of his back so it was about time.  He looks like such a big boy now!  I have pictures to post as soon as I have a chance to upload.  Next I need to get a new pair of glasses.

I brought Ty upstairs later in the day because I had to try on clothes and he was so sweet.  I would try something on, then bring the clothes over to Ty and help him to point to the ones he liked best.  His speech has been absolutely terrible over the past two days (to the point where we often can't understand the difference between yes and no), but our little fashion show turned out to be a nice distraction for him.  At one point he pointed to a black dress and I smiled and said "don't you think that made me look chubby?"  He said, very loud and clear, "No!"  He is the best boy in the whole world who will make the greatest husband some day if God gives him the chance J

Ty and Gavin also received a very special package all the way from a ministry in Louisiana a couple of days ago.  It's amazing how far his story has travelled.  The package included two very special stuffed turtles that are intended for small children with chronic illness/injuries because they are the perfect size and softness to use as positioners or to elevate their legs.  The first turtle was used by a beautiful little child named Sam who had a near-fatal drowning accident and his favorite turtle was used to prop up his legs while he was in the PICU from March - May 2007.  Ty and Gavin both loved the gift and we use Ty's turtle in the same way to get him comfy on the couch in front of the TV. 

We have an appointment with Ty's doctor's after his radiation treatment this morning and we are very anxious about it.  Of course, the Hutchinson Parkway and the Bronx River Parkway were both closed due to flooding this morning so our drive in is miserable.  Anyway, Ty has improved drastically in some ways, but he suffered rapid declines in other ways.  His headpain and nausea are practically gone!  We have waited four months for Ty to have a day without headaches again, and finally we are there.  It is such a relief, but it doesn't come without a price.  As a trade off, his myopathy has gotten worse, his speech is gone, he can't take anything by mouth - not even a drink - and he is very depressed about it.  He cries so much it is absolutely heartbreaking.  Lou and I hope to hear that this is expected and that these side effects will diminish over the next week or so.  We are just very worried.  I will be sure to post an update later this afternoon to let everyone know what his team says. 

16 comments:

  1. I really hate that Ty is having to get so down. He deserves to be happy and pain free. I will be praying for you, the rest of the family and most of all for a much needed miracle for sweet baby boy Ty :O)

    Much love,
    Mary E. King and the rest of the King Family
    GA
    PS... Please email me the po box info so we can mail a happy package to Ty :O)

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  2. I am praying your appointment goes well today. It's heartbreaking to hear that Ty is down but hopefully his doctors will be able to give you the answers you need and want. I wish I could give Ty a big hug to help cheer him up, I know there are times when we really could use one. I will be thinking of him often today, prayers and good healing thoughts coming your way.

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  3. my heart just breaks for your beautiful boy. i can only imagine the depths of your pain. God bless you all.

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  4. My family continues to pray for Ty. Throughout the day I find myself in tears begging God to make Ty better. I fought 10 years to get my baby and you are fighting to keep your baby. The price we pay for our angels is worth every step but I pray God will make your journey easier soon. I wait with baited breath for the results today. We would like to send Ty and Gavin a package as well. Also, I think Mommy and Daddy deserve something and we would like to send our precious thoughts from GA. If there is a PO box to send packages, please let me know. Your family is integrated into ours.

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  5. I am sorry to hear that Ty is feeling a little sad and depressed...... he has been through so much and he deserves to get better and feel like a normal little boy again. I am praying for him and the rest of your family. It must be hard to keep your composure and sanity sometimes, but I think you are doing an awesome job and think your boys are truly blessed to have you as their mommy:) Fingers are crossed that you get some much deserved good news later today..... I will check in later for an update.

    Fondly,
    Krystal Gallagher

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  6. Oh, Cindy... you are an amazingly strong woman. Chris and I witnessed Lou's strength and loyalty first hand in college. We don't know you personally (we met once at a wedding) but you and Lou are incredible parents, THE INCREDIBLES! Ty's super powers come from his parents, and I am sure Gavin is a super hero brother too! I pray believing that God will allow Ty to be that amazing husband you know he will be (never telling his wife that she looks chubby in her little black dress :)! And I pray that in time and through his healing these painful days will fade from his memory, and he will have the childhood that you sooo want for him! Thank you for sharing your life with us and allowing Ty's story to teach us how to be strong. Love to you all. We are praying continually
    Love,
    Chris and Jen Kohrmann

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  7. Cindy your drive to get your son well is an inspiration to all of us. I understand what you are going through I have a 4 yr old cousin who also has a brain tumor........I prayed for your son and I continue to do so. If I can ever be of assistance to your or your family, pleease do not hesitate to contact me. I work right across the street from MSK. Keep strong !

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  8. thoughts and prayers from California

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  9. Cindy,

    My heart is breaking for Ty! Please update us as soon as you can! Hopefully, it is what you think, and his condition with improve.

    I think of your family all day long!

    Praying for you guys always!

    Joy Marielle
    Baltimore, MD

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  10. Dear Cindy,
    Ty and the rest of your family are in my thoughts everyday.

    Carmel, NY

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  11. Ty's beautiful lashes are an outward representation of his inward strength and beauty and that of course he gets from his superstrong parents. Nobody really knows their strength till it is tested so keep the faith and stay strong.

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  12. You are amazing......You are tested Daily, but you try to make Ty as happy as possible, and it must be absolutely heartbreaking to watch this as a mother, again my heart goes out to you, and you are always in my thoughts & prayers <3

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  13. Thinking of you all and happy to see the sun came out for your drive home!

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  14. I have been following your story and check in on Ty every day, Ty and your family are in my thoughts and prayers, he is a beautiful and strong little boy. I hope you get the answers you want that the therapy is working and Ty will get better soon. I wish you all the best. Thank you for sharing your story and keeping us updated on Tys progress.
    Gina from Ct.

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  15. I just realized Ty's initials are 'TLC' Tender Loving Care!

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  16. Oh my goodness, I've checked in at least 10 times today. it's so hard to wait to hear what the doctor's had to say. Sending so much love and light...

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