Sunday, June 12, 2011

Hugs around the neck

Weeks ago, Lou was looking at a friend's photograph and mentioned how unfair it felt to see her son with his arms wrapped around her neck; the two of them sporting ear-to-ear smiles for the camera.  We just wanted to be able to hug Ty the same way.  He was so weak for so long, at the time we started to forget what a giant hug around the neck feels like. If you think about it, the neck is the best place for those little arms to reach around and give a genuine, love-filled squeeze.  When I would carry Ty around, I used to have to pull on his limp arms and prop them up on my shoulders until gravity would eventually carry them back down to his side.  It was so depressing.  I am telling you all of this only to help you understand how far he has come in such a short period of time. 

Tonight I laid in bed with Ty as he held me around the neck, tighter than ever, and drifted off to sleep.  Slowly but surely, he is getting there. He gives the best hugs now, he is sitting up without support again, and he can roll from one side to another in bed to help get himself comfortable - thank God because he was constantly waking me up to have me turn him from one side to another.  Imagine feeling the need to toss and turn at night but not being able to do so?  I think that's why he has such trouble sleeping.  Lou and I have also been getting him to stand up on his feet for a few seconds at a time at least once every day (with our support, of course, but he can almost hold his own weight).  After I held him up today, he said to me "that was a long time, Mommy, I'm getting stronger!"  You sure are, baby boy. 

I just hope his physical improvement continues at this pace.  Since chemo last week, he is spending more time laying down again and I just don't want to lose momentum.  He isn't feeling well, and with the new drug added we don't know what to expect from him in coming weeks.  I pray that he begins to feel better soon after we finish with the oral chemo (tomorrow night is his last dose).   

Lou and I are just so worried about our little guy.  This weekend was so difficult for him and we just have to keep reminding one another that his symptoms are very likely from tumor activity as a result of effective chemotherapy treatment.  Regardless, we can't help but tear up when we notice his speech slurring a little more or his mouth opening in a gesture he used to do often way back in August to relieve pressure.  Why did this have to happen to us?  To him?  I'll never ever understand.  Well, not during my time on this earth anyway.  It's just so unfair. 

Ty isn't in much pain, which is huge.  In fact, he is practically off morphine which is totally amazing (I am so afraid I am jinxing him by writing that, but enough time has passed that I hope it's for good). He has a lot of nausea and he just seems to feel like c*ap but he can't communicate it well so he spends a lot of the day whining, crying and trying to get comfortable.  He throws up pretty often, but not as much as I feared.  We are managing his symptoms well with anti-nausea medications and they seem to be helping quite a bit.  He has a lot of ups and downs through the day, I think mostly because he is so tired on top of everything and that can bring on mood swings.  During his ups, though, he couldn't be sweeter.  You would never think this kid is going through all that he's been through.  Unfortunately, he only feels good like that for about an hour or two at a time.  Lou and I try to make the most of those times by playing whatever he wants, reading his favorite stories and stealing as many smiling hugs as we can.   

Forgive me for my delayed posts.  Ty has been very needy, especially at night, so I don't get much time to get online.  In fact, it sounds like he just woke up again so I'll have to cut this short.  I intended on posting a video of him and his brother playing so sweetly, but I will have to do that tomorrow.  In the meantime, goodnight to you all and we love you. 


  1. You can do it Ty!


  2. Every small step is a milestone. Keep up the good work SuperTy. THank you for never giving up!!!

    Love you,

  3. Praying and wishing he didn't have to go through any of this...

  4. It sounds like he's doing really well in the face of so many challenges. I'll be praying that me has more good times today.

  5. Glad to hear Ty is somewhat better w/ this round of treatment. I was on vacation all last week, but had to look periodically for your updates on Ty. Sweet video you posted the other day....

    Thinking of y'all,

  6. Cindy & Lou,

    He is going to pull through this and wrap those little arms around your necks until you have to say, stop Ty your strangling me!!! :) I truly believe that, he is such a strong little fighter!

    I can try all I want to put myself in your shoes, but I never am able to. I do not know what you guys are going through, and I can never imagine having to go through this. I know that I would not have the strength that your family does.

    I think you guys are incredible, and I cannot wait for the post that Ty is cancer free!!!!

    Team Ty!!! :)

    Thinking about you guys always.

    Joy Marielle
    Baltimore, MD