Monday, May 9, 2011

Beyond bittersweet

Is there a word that means "bittersweet" times a thousand?? 


Everything about today was beyond bittersweet because Ty had the best day in months upon months, yet we have to kick him right back down by starting up chemo again later this week. 

Just look at my little supermodel up there.  He was wide eyed and happy all day.  He looks a little melancholy above, but he is actually just posing for the camera :)  Today was the first day since I can remember that he didn't require ANY pain or nausea meds.  On Saturday we took him off his steroids completely, and he is getting stronger in his arms and legs as a result (the withdrawal made him sick all weekend, but today he was feeling terrific and didn't throw up at all).  He has some minor pain in his arms and legs, but I welcome it because it means his muscles are being put to work.  Now we just need to build up his appetite.  I can't help but watch him getting better and think, how can he still have cancer??? How is it possible that his disease is spreading when he is singing and laughing out loud like this???

We took the boys to the park this afternoon to picnic and fly kites.  It was the most beautiful day and Ty laughed at me over and over again as I tried to get the kite in the air and when all of our food was blown off the table from the wind.  It really was funny; nothing ever works out like I plan it to.  I gave him so many kisses today, he is probably so sick of me smothering him.  He was singing in the car all day long.  Today is my Dad's 70th birthday (happy birthday Dad! - we love you more than you can imagine) and the song of the day was "Happy Birthday to Pop-Pop."  Ty also convinced me that we needed to go out to buy Pop-Pop a present, and that he would like a new toy, of course.  Here they are together just last year.  Hope he wanted a rainbow colored collection of bouncy balls for his big day!  That's what seven decades will get ya! 


Ty also had a real bath today, and it was long overdue.  He fought me tooth and nail, but afterward I could tell he felt soooo good.  Who doesn't feel great after a nice, long bath?  When I dried his hair, I even noticed that his curls are just beginning to show again - check them out in the picture below!  I was so excited.  Of course, that joy was quickly stolen from me knowing how short-lived this is with chemo around the corner.  It's just so unfair.  I just want him to be normal again... To get back on his feet... To go out in public and not look like "the sick kid" anymore... I just want him to be all better.

 
Alas, his doctors don't want to wait another day before starting him on treatment - and neither do we.  The rate at which his new tumors are growing (as seen in Friday's scan) puts him at too much risk to delay treatment in order to replace his shunt, so instead we are planning to begin treatment on Thursday while keeping Ty on prophylactic antibiotics with the hope to keep any infection that is harbored in his shunt under control when his white blood cell/neutrophil counts drop.  There may be an alternative plan to replace the shunt during his chemotherapy, but it is complicated so I will save my breath until I know more and can explain it better. 

The bottom line is, Ty is going to get really sick again. Before he even had a chance to enjoy feeling better after all this time. He is still so weak and so insecure to start off with, I am crushed by the thought of it.  My poor baby.  Please, God, let this work.  Save my baby boy.   

XOXO.  With all of our love to you all.

13 comments:

  1. What a beautiful, beautiful, beautiful little boy. He is such a sweet heart and (as I always say) he deserves to be so happy. It is amazing that he feels so well when I would think that doctors would anticipate that he would be feeling worse. How can it be that he feels so well and that this terrible disease is spreading? It almost makes me question myself as I read because it does not seem rational.

    Saturday after writing Ty on facebook and the blog I had a bit of a breakdown. (As strong as I try to sound) I was weeping like a baby begging God to heal this little boy, to take the pain away, to rip this cancer out of his innocent body. I felt so weak and helpless and then the thought of how Cindy and Lou feel hit me and couldn’t help but be amazed at how strong these two beautiful people are.

    Chemo… what a scary thought. When you posted that Chemo was to start in two weeks I was nervous… Not that I am happy about chemo, but, I am happy that treatment is going to start sooner than two weeks!

    I am here for your family whatever way you need me just email me Cindy.

    Love you TY… so very much.

    Mary E. King and the rest of the King family

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  2. Thinking and praying for Ty. I have fallen in love through your blogs with this little angel. God is good and I'm sure that he is hearing everyone's prayers.
    I thought of you yesterday as I was taking my 18 month old for a routine checkup and fretting about her having to get shots and quickly thought to myself "Why are you getting so upset think about Cindy and what she has to watch Ty go through!"
    I hope you realize how strong and wonderful you are. You have a beautiful family!

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  3. Ty deserves many more days like the one he had yesterday! Hoping and praying his next round of treatment is a success.

    ~Jessica
    IL

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  4. He just looks so good. Enjoy this week and know that chemo will be over too. He will get back to feeling and looking so good again after he beats his cancer.
    Lots of love and prayers going you way.

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  5. What great pics you posted, Ty is adorable!! It is so hard for me not to try to place myself in your situation and everytime I try to think of it, I just can't go there. I just can't fathom it and I wish you didn't have to either.

    It breaks my heart to hear you say how great Ty is feeling and to know by Thursday he may be sick again w/ the chemo. It really isn't fair. An innocent child, Ty, and other children dealing w/ issues that even adults shouldn't have to deal w/. :(

    I am cheering for you, Lou, Gavin and esp. Ty! Y'all have handled worse, so I feel confident in the ability y'all possess to get thru one more hurdle.

    I love y'all!!!
    Jan
    Georgia

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  6. Ty - is such a beautiful little boy. I am praying for him and thinking about him every day. You are such an amazing mom and such a strong person. You are truly an inspiration. Your baby boy has touched my heart. I pray that he can have many more days like today. God knows he deserves them.

    Ann from Buffalo

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  7. Our prayers are with you.

    Andrew (Durham, NC)

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  8. Ty's progress is wonderful!! Glad to hear you guys have gotten a biabot a break before your next round of beating cancer up!! Go Team Ty!! This will work!! Fight! Fight! Fight!!

    Thinking of you all (even Lou) all the time!

    With love, prayers, and hope!!
    Brooke, Eric, Emily and Owen <3 <3 <3

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  9. beautiful pictures Cindy. thank you for sharing with us. i am so relieved you got to have a day like yesterday. i love Ty's hair.
    stephanie

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  10. I hope this is the magic Ty needs. He is so strong--he has to beat the cancer up! I pray that he soon has many more good days like he did this weekend. My thoughts are with you and your family--especially Ty.

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  11. Cindy:

    Happy Mother's Day to a SUPER MOM!!!!

    Officially I can say that this proves that Ty WILL be better after all the treatments. He is showing you. It will take time and effort, but you will see God's miracle. Put Ty always within His love.

    We have a visual goal: we see you and the boys for next Easter running holding the kite string in el Morro Fort in Puerto Rico, with flip-flops on!

    I feeel the health, now all of you, who are close to him, have to feel it and see it. Do this exercise: see each step as the need for health to come back to him; this is his unique way his body is fighting cancer. See it as.... a rash. It has to come out, before it disappears.

    We love you and all your family. Kisses to Uncle John!


    Remember:

    Don't be discouraged. It's often the last key in the bunch that opens the lock. ~Author Unknown

    I may not be there yet, but I'm closer than I was yesterday. ~Author Unknown

    When the world says, "Give up,"
    Hope whispers, "Try it one more time."~Author Unknown

    Difficult things take a long time, impossible things a little longer. ~André A. Jackson

    Don't be afraid to give your best to what seemingly are small jobs. Every time you conquer one it makes you that much stronger. If you do the little jobs well, the big ones will tend to take care of themselves. ~Dale Carnegie


    Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain. ~Author Unknown

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  12. Wow Rosalyn Your the best!!! I love your thoughts! <3

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  13. Thinking about you and Ty -- and continuing to say lots of prayers.

    -Christina in Yorktown

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