Tuesday, March 1, 2011

Kryptonite

SuperTy is not feeling very super.  We went to the hospital today to discuss radiation therapy and ended up overnite because he is just so weak.  His headpain is very significant, his nausea still isn't under control, his speech has been so compromised that I can barely understand what he's trying to tell me (I have to hold up pictures and ask him to point), he still can't move his legs and he can barely move his arms.  My little superhero hasn't lost his sense of humor, though... he just pointed and told Lou he was "chopped liver" because he had to sleep on the chair next to us while I get to sleep in his bed.  He grinned from ear to ear.  I love him so much.

The doctor's may as well have told us that he was drained by kryptonite because they otherwise have NO idea why Ty is so weak.  We went for a CT scan and a series of x-rays to make sure his shunt is functioning properly, and everything looked as it should.  It doesn't look like there have been any changes at the tumor site (THANK YOU, GOD) and his bloodwork looks fine.  So... we will be getting an MRI tomorrow.  Please pray that it doesn't show us anything different pertaining to the tumor.  The doctor's suspect that perhaps his brainstem is swelling as it decompresses and causing some of these side-effects.  The weakness in his arms and legs is a result of acute steroid myopathy which occurred a few weeks ago after our repeat visits to Urgent Care. 

When high doses of steroids are given, it can have some devastating side effects, especially in the upper arms and thighs.  Don't get me wrong, the steroids saved Ty's life on more than one occasion in January, but we have been trying to taper them ever since so he can begin to improve physically.  I have a feeling that we will need to increase that dose again if his current problems are related to swelling in the brainstem.  So frustrating. In the long run, though, I won't care if Ty can't walk for several more weeks... even months... as long as he survives this nightmare in the end. 

When new nurses or doctors review his file, they always express shock when they see all that he has been through over the last six months (six months!!!).  Knowing that Ty has charged on despite so many bumps in the road makes me even more confident that he will get through this.  He is a blessed little boy with an iron fist.  Thank you for following him on this journey. 

I have mentioned before that sometimes I let off steam when I am alone in my car by screaming my head off and crying a good cry.  I usually yell at the cancer, "Leave him ALONE!!!  Get the f___ away from my baby!!!" and it helps me to feel better.  I haven't had any time alone in the car for weeks and I can actually feel the need to yell and scream, but I should probably just go to the gym or something instead.  I must look like a complete crazy person to anyone who pulls up alongside me :) 

I was so happy when I walked by one of the orange rooms on the 9th floor today because a little girl who had been here since October wasn't there anymore.  Her name is Casey.  Of course my heart then immediately sank worrying that perhaps she had taken a turn for the worse.  Later this evening I took a walk around the hall and I saw that she was in a different room, her pictures were taped to the door. That released me from the worry that had been weighing on my mind since I passed her room earlier, but now my heart is filled with pain for her family.  Just when I was reflecting on how many nights I've spent in these rooms, I realized that they have been here for much, much longer.  These poor babies.  They have such an incredible spirit to be able to endure all of this and still fight for their lives.  Each and every one of these kids is an inspiration.  God bless them. 

YOU CAN BE THE MATCH
That reminds me.  Among the most common childhood cancers are leukemia and lymphoma. So many of the children I see here day in and day out are waiting for a bone marrow transplant.  Please consider visiting http://www.bethematch.org/.  You can easily register online, they will send you a kit with cotton swabs for your cheeks, and you can mail it back in a pre-paid envelope.  I did this a couple of months ago and it was so easy.  You have all done so much for me and my family, this is just a small way in which I wanted to pay it forward.  I had never heard of this before I became a "cancer mom" and I just wanted to share information about this amazing organization.  XOXO.

17 comments:

  1. Blessings and my prayers are with you and your family.

    Andrew Stillwell

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  2. I am so touched by your story...I keep you and your family in my thoughts and prayers every day. I am a single mom of five children and I can't even imagine all that you have been through having never had to face anything as severe as what your family is going through. Hang in there it has to get better from here. Ty is an amazing little boy and I wish him all the best. XOXOXO

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  3. Scream Cindy... scream away! Sometimes even screaming into a pillow helps, or smash the hell out of a punching bag.. it'll do wonders for ur anger. I'm praying daily for you, Ty and the rest of ur family. I know how frustrating it can be to hear Don't give up, or It'll get better when ur aggravated and not seeing any changes. I'm sorry for that and I'm sorry that this horrible disease is effecting ur beautiful little boy. But know that even if you feel like giving up sometimes, all of us here, whether we know u or not are NOT giving up and will continue to pray for Ty's health and recovery. Stay Blessed <3

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  4. Cindy I love you. There is a way there is a way there is way.

    Do get in the car and scream your head off.

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  5. I am sorry to read that Ty and you guys ended up having to stay in the hospital. We continue to pray for you all every day. Ty is such an amazing child, and you and Lou are amazing parents. I hope this latest bump in the road is behind you soon.

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  6. I have never met your family, but I am very touched by your story. I will continue to pray for Ty and your family. God bless...

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  7. Girl - you scream. Whatever keeps you going and strong you do. God will not leave you even if you scream at Him. So you do what you need to do and know a lot of people keep sending you hugs. I am holding Ty in my heart this week that tests will give you some answers and that you will hear from Boston soon. Hugs from Georgia. FYI - my 3 year hold includes Ty in his prayers that God will put a big bandaid on Ty's owie. How can He not resist the sound of that little sweet voice.

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  8. Prayers coming from RI! I have been reading about your family for a few weeks now and although my son has had some pretty major/serious medical issues, I just can't imagine what Ty and the rest of you are going through! Stay strong Mom and scream away. You need that release.
    Sending blessings of strength and healing to Ty and your family.
    Prayers :)

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  9. I just joined the registry at http://www.bethematch.org - thanks for the link. Please keep the updates coming and please stay strong.

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  10. On one hand I am truly sad that you are back in the hospital again but on the other grateful that you are there in case anything happens. Stay strong, all will prevail.

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  11. Cindy I am so sad that you are back at MSK and I have written to you previously to tell you that I work right across the street and if I can help oyu in any way please dont hesitate to email me at akapaige@aol.com. My 4 yrs old cousin has a growing brain tumor and she lives in Louisanna. he has Optical Cancer I believe is what they called it and NY Pres also did the first operation for her and she was at MSK also. I feel helpless and I want to help this child. right now she is getting chemo in Louisanna and I have suggested to go to another hospital. I pray for oyur son and my 4 year old ocusin as well.......God please help bpoth these children.........She hasnot had radiation. She has 1 shunt in her head and she is filling with water and may have to get another shunt..........My heart breaks.....we all love her so very much so i understand what u r going through.......Keep strong Cindy........

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  12. Cindy,

    I will continue to pray for your special little boy! He is such an angel, and you know he will get through this. Miracles happen every day! I pray for Ty every night!

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  13. I have been checking your postings for about two weeks now. Ty is a strong boy. I pray everyday for all of you.
    At church this past weekend Father reminded us of a story I learned as a child, Footprints in the Sand. It was about God and man walking together and their feet making imprints in the sand. There were two sets of foot prints in the sand and then there one set of foot prints. The man yelled at God saying that is when you left me alone! God replied to him no that is when I carried you.
    Scream. God will carry you.

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  14. I pray that things will turn around for your little angel. You are all in my prayers. I wish I could do more than that. Bless you...

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  15. Cindy, I can give you the keys to my apt if you want a place to scream!!!!! I'll come over to the hospital and sit with Ty while you listening to angry music, crying, and screaming!!!! Get it out your system!!! I'm serious. Love!!! Juliet

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  16. Thank you Cindy for posting the information about be the match. While you are going through the most difficult time, you still have an incredible ability to think of others. In December, I attended a be the match drive for a man in Harrison, N.Y. and got swabbed in honor of Ty. This is a great way to pay it forward in the name of Ty.

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