Thursday, April 7, 2011

Oh no... I have to pee!

When I am alone with Ty, a trip to the bathroom is the most stressful experience.  Parents are not permitted to use the restroom in the patient rooms unless both occupants are not using it.  Ty's roommate is almost four and he uses the potty, so we have to go down the hall to the shared bathroom to wash up, get changed, shower and, obviously, go to the bathroom.  I totally get it and appreciate the rules because it is important to be as sanitary as possible for these little fighters, so I certainly don't want to come off as if I'm complaining.  That is not my point.

I just thought I would share this with you, because it should be such a simple thing... wanting to brush my teeth before I go to bed... or wanting to wash up with a proper skin regimen and moisturize my face before bed... yet it is the complete opposite of simple when we are here.  If Ty is awake, I have to prepare him for the fact that I am leaving him alone in the room for a few minutes.  He is never happy about it.  I have to put on a movie, bribe him, etc.  Then, as soon as I set foot outside the door, the panic begins... what if he throws up?  He throws up ALL THE TIME, what if I'm not there??  When I sneak out while he's sleeping it's even worse because I worry he'll wake up nauseous or in pain and have no idea where I am.  My trips to the bathroom are comical.  I rush everything.  I actually floss in the room before I head down to the bathroom to save time, and I leave prepared in such a way that I can go through my bedtime routine as fast as possible (pajamas, brush, splash water on my face, pee, run back to the room).

I am sharing this only because I just returned from that stressful place and I was beyond relieved to find that Ty had fallen asleep in the short time that I was gone.  It is just top of mind, I guess.  I realize that sometimes this blog gets a little silly or I get hung up on some boring details, but I want anyone who is reading this to know that it helps me.  Posting these updates give me a lifeline to the outside world, and your constant, unwavering support helps me to find solace and rest a bit easier.  Not to mention that it is an incredible outlet for all of my pent up frustrations (as evident in today's topic :)).

Ty is resting peacefully and he is doing well.  He has regained so much strength in his right arm that he is proud to say he can pick his nose again.  He also reaches out to me with that hand and wants to cuddle every night, which... how can I even put in words how that makes me feel.  He is just so special.  I wonder if it gets annoying to him to hear me tell him how cute and how special he is a million times a day! 

Goodnight all.  Thanks for caring.  XOXO.

30 comments:

  1. Haha..that is funny. I was actually wondering how Sloan hooks up the situation to make it easier for the family. I was thinking more on the lines of a private room with a bed for mom and a bed for Ty. I was way off, sounds like BOOT CAMP! Well at least you are getting your exercise in with your sprinting back and forth and your fast brush and wipes!! LOL!

    Love the picture...too cute!! You two look so much alike, such seriousness and determination.

    I hope he stops this puking thing soon. I am always so amazed how my kids (mostly my daughter can get sick (a lot) and then cry, smile, wipe and start playing all within a couple of minutes. Me forget about it, never had the stomach to drink but that never stopped me. I HATE that pukey hangover feeling. Kids can handle so much more than us, so amazing.

    Do they think it might be GI related? I am sure your docs know about cushing ulcers. How are the headaches?

    I was reading some new journal articles regarding the work by the chief neurosurgeon at John Hopkins named Henry Brem, he sounds top notch and amazing. He invented these Gliadel wafers, which actually are put at the tumor site within the brain and slowly release chemotherapy directly on the tumor to destroy the bits that surgery and radiation do not get to. He also has some present research using oncolytic viruses. Just thought I would put the idea out there since you have next steps coming. Here is his link: http://www.hopkinsmedicine.org/bin/e/l/brem_bio.pdf

    So one more week and you get to go home right!!! Yippy!! Go Team TY!

    I gotta get back to work. Pleasant dreams! Love and prayers!

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  2. What a wonderful Mama you are...

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  3. If I ever met you I would run up to you & give you a huge hug. You would probably think I am nuts - but I don't think you realize how much your faithful readers connect with you. If it's PEE you need to talk about - we will listen! Keep on going MAMA! I know I can speak for many when I say - we are here to listen to you. You inspire me & Ty is an absolute hero! I thank God for the miracle of curing him because I know He will!

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  4. I agree with Nancy's comment above! You share what is on your mind and we are all hanging on your every word. Why is it that even if you blog about the bathroom, I still find myself in tears, must be the sweet photo. When I sign on my computer each morning I always check your site first to see if there is an update and when I see there is I say a prayer in my head before I click on it. I am so thrilled with the recent updates!! I believe in my heart that one day...Ty will be happily playing, riding bikes, at the beach, going on dates...and all this will be a distant memory. One you could never forget, but one that does not affect his life anymore. He will/is beating this and he is a miracle in every sense of the word.

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  5. Go ahead and vent all you want. I hope long after Ty gets better that you continue to write, you seem to be a natural. Hugs & prayers from Canada.

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  6. I completely agree with Nancy and Mari. I am more than happy to read anything that you need to post. You are an amazing mom and Ty is an angel. That picture brought tears to my eyes as your post pretty much does every day for me. Your strength actually gives me strength in my life. I know that probably sounds strange but I find you both so inspiring and what you are going through is incredible. I just want you to know that you have so many people pulling for ty and praying for you both to get through this and put it behind you. I pray that Ty will be playing on the beach soon in the sun enjoying the summer as he so much deserves! Hang in there.

    ann in Buffalo

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  7. I also agree with Nancy & Mari, I look forward everyday to reading your posts. Ty & the rest of your family has become a part of my heart. Ty is such an amazing boy and his story along with your family's strength is such an inspiration to us all. I absolutly love this picture, it is truly priceless. Continued prayers for your family.

    Love,
    Jennifer
    Indianapolis, IN

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  8. That is an incredibly precious picture!

    Sending you lots of hugs, love and prayers for your AMAZING Ty.

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  9. I love the pic. That is so sweet, he looks so peaceful!

    I love reading your posts and even the post today. We all get insight on what you and your family are going thru and having to endure. Even the small things (such as going to the b-room) are huge when you are away from home and out of your element.

    I hope y'all have a great weekend and Ty continues to improve!!

    Jan
    Georgia

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  10. Nancy & Mari hit it right on the nose! We are all here to listen even if it is about PEE LOL!!! Hang in there you are doing great! And Sweet Super Ty is also doing great! I see where he gets his fight and determination!
    I check in on you guys everyday...I'm always praying for your beautiful family!

    May God bless you guys always!!

    Love-

    Zoraida

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  11. The bond you are cementing with Ty will never be broken. Sharing your every thought with us allows us to not only see how Ty is doing, but see YOUR incredible STRENGTH and ability to multi-task in seconds!

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  12. what if you got a special "i'm going to the bathroom" doll to hold your place in case he wakes up and doesn't see you? or walkie talkies?
    i think about you guys all the time, and check every day to see how ty and the rest of you are doing. you are an inspiration as a mom, and i pray every day that ty will continue getting better.

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  13. Your posts are never silly, and personally I love to read the ones where you just "talk". I feel like it helps us all to know you! You are such a wonderful mother/person and I think of you all daily. There isn't a day that goes by when I don't check this blog (I often check several times a day!) And when I see a new blog my heart beats fast and I can't wait to read what happened with Ty, or how yall's day went, etc... It is such a release and I'm always so sad when there isn't a new blog (even though I know some days may be too busy, etc) for you to write!!! I love you all so much! - the Bonura family from Louisiana.

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  14. I love this post :O) Ty is such a sweetheart and you are such a special momma :O) I love you both so much!!!!

    ONE WEEK LEFT!!!! I cannot stop talking about it to everyone who will listen!!!

    Ready for little man to get a chance to go home for a while and rest!

    Love Yall,

    Mary E. King and the rest of the King Family
    GA

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  15. Wow, again, I am a complete stranger in Dublin, Ohio, but I read about Ty daily! I pray for your family and him daily as well! Sweet picture today, love it! Yes, please telling us day to day "stuff", if we are reading it is because we care about every little thing! I hope that you are realizing through reading all of these how much we all admire and respect you and love Ty because of this site! Awesome work, keep it up and know that we will keep up our end by praying and cheering!
    Lynn Salyer

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  16. I am also a complete stranger but find myself checking your blog first thing in the morning to see how Ty is doing. Your dedication to Ty makes me strive to be the best Mom that I can be. You truly are an amazing mother and wife.

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  17. Isn't it funny how these things can make you crazy and they are so simple but yet so difficult at the same time? It's the mind of a mom. A loving, brave, concerned MOM. Thank you for continuing to update your blog. Praying for your little guy and all who love him!

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  18. What a beautiful picture of you and Ty. And yes, we all need lots of laughter and a little levity in life! You are truly a special family with a very special little boy!

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  19. the picture is priceless. you are a beautiful mom. the gift you share with us everyday with your blog is a blessing. thank God for strong bladders.
    stephanie-near buffalo, ny

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  20. Cindy,
    Whatever it is that you need to talk about is what we need and want to hear. You never let us down. Your candor and honesty in your correspondences is exactly what the reality of this situation calls for. Sugar coating it will not change the truth (it only wraps it in a candy shell that disappears anyway) and we all want to be as strong for you and your family as you have been thus far and continue to be. We know you are brave because you aren't afraid to tell us when you are feeling scared. We experience your joy because we know your sorrow.
    I look forward to the day when we can all sit together at the beach (we'll pack a special cooler!) and toast this wilted time of your lives being in the past. The beach has always been a special place for me and that is how I choose to visualize you and Lou and the boys- sunkissed, splashing, digging, smiling- to will it to reality. Our family holds yours in our hearts daily and we look forward to a gorgeous day in the sun and sand (hopefully sooner than later!) when the time comes. The Campbell's have changed my life forever- as I have witnessed for countless others, as well- and your capacity for love will see us all through and inspire us. We are all right by your sides and although we can never take this from you, we will share it and endure it and fight it with you. Keep that super spirit up!!

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  21. Oh its not silly at all mommy!!! We're all here with you. All of us posting are feeling your pain. My little 3yr old Patrick (Patchy), and 6yr old Danny wanted to say hi to Ty. Patrick looks so much like Ty that he always points to Ty's photo and says, "its me!!!" Lol. I love that. So cute. Getter better angel......We're all praying for you.....Love the Chase family.....NY.NY.

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  22. crying, tears of happiness that you are able to share these little moments with your special boy. And as a mom, I can tell you it's not silly. That one little hand, touching your face, really can melt away any stress or anger or sadness. One little hand.

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  23. That picture of you and Ty soundly sleeping and his hand touching your face is "priceless" and YOU are amazing...and TY is a little miracle:)Love your blogs...always look forward to seeing how your day has been. Prayers to you and Ty.

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  24. Now you really are like a nurse!

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  25. That pic is amazing and I am so happy to hear that Ty seems to be having some good days - you are all constantly in my family's prayers!

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  26. Cindy,

    I love that picture, it is so sweet! So happy to hear Ty is feeling well and you guys only have one week left to go until you get to go home!!! I think about you guys everyday!

    Joy Marielle
    Baltimore, MD

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  27. God, I never thought about this stuff. When I'm at home, I'm thinking about you all the time and how you spend your day and what it's like there. Wouldn't it be nice if the parents had a suite off the room with a private bathroom? Maybe there is some germ proof building material they could use. When I win the lottery, I'm looking into this. Love you, Cindy. You are the best. Those cheeks are almost as gorgeous as his lashes. Can't wait to see you.

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  28. Hi there,
    I have been reading your blog for the past couple of months and am amazed at every entry of how much your famlily endures daily. I, like many others, love to hear the simple silly things like going to the bathroom. Those are the things we don't really think of but such daily things that you have to think of while caring for your special boy. The photo of you and Ty is a photo to treasure always. It really is beautiful. It says so much. And you both have such a look of dedication and fight on your faces as you sleep just proving that you are some very strong fighters and Ty will beat this... Thank you for sharing your story with so many of us.
    Lynne

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  29. Cindy:

    This kind of reminds me of a newborn situation. One had to be on top of every move. So think about it this way, you are in the process of a newborn Ty!

    In terms of running back and forth, think about it as a relay race. To make it fun, put a chronometer and have Ty time you. This is your peace time too, if he is sleeping; so as you take each step, realize that it is a step closer to a healthier Ty and flip flops :)

    This moments you will cherish, beyond the tears, stress. You will look back at them and realize how much God loves you, Ty, Lou, Gavin and all of the family and extended ones :)

    We ALL are here for you, we are all eyes, ears, thoughts, prayers, hope, faith and LOVE for Ty and you all!

    Remember:
    The harder the conflict, the more glorious the triumph. - Thomas Paine

    One person with a belief is equal to a force of ninety-nine who have only interests. - Peter Marshall

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  30. Keep on writing.. I am sure we are all here and reading your blog to support you and your family.. It is amazing to me every time I read these posts how strong and how well you manage all of this. You are an amazing mother and Ty is so lucky to have you.. Hopefully the good news keeps coming in.. Sending has many prayers as possible to you that by this time next year you are only writing about what is going on at pre-school

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