Tuesday, May 17, 2011

Don't look back

Tonight I shared my shower with just a small, harmless insect and it reminded me of my daily experience in my college dorm.  It was tolerable.  I turned up the heat and allowed myself to think.  I thought about all that Ty has missed over the last nine months.  How shocked I am to this day that my perfectly healthy baby boy is now so physically weak and underweight.  How sad I am when I look at his "life before cancer pictures" because he can never be that baby again.  He can never get that time back and he will never get to be an active three-year old.  I feel so robbed.  Even worse, HE has been robbed.  Robbed of so much fun and laughter. 

Before cancer, I was happily living in a world of simple blessings.  It was a perfectly fine life and I want it back more than anything... but there are some things that this experience has given me that I am actually grateful for.  Especially the intensity of my own feelings.  I hadn't known the depths of my love, because they had never been challenged with such ferocity.  I had otherwise been unaware of how great my instincts are to protect my children.  I would have never imagined that I would be capable of witnessing and living this alternate life that I have been thrown into.  It's not fun, and it is cruel, but it is shaping me forever.  I think it's the same for Ty.  He has always been so special, but I promise you that he will grow into an amazing man who does great things.  I hold myself personally responsible to be sure of that.  So, I decided that I need to stop looking backward.  That we need to continue to plow forward with a vengeance. 


When I returned to the room after my shower, I told Lou that I needed to find the DNR that I carry with me and tear it up (a legal document that reads "do not recusitate").  He debated with me a bit, but ultimately agreed.  We are here at the hospital, subjecting Ty to his FIFTH shunt revision, because we have high hopes for a cure.  As long as Ty is actively being treated, there is no need for me to carry this horrifying sheet of paper with me everywhere I go.  I am not ready for that.  When I signed this in March, Ty was in a catasprophic state.  His doctors didn't think there was much more they could do for Ty.  They didn't know how he would respond to the radiation, and if he didn't react well they feared he would end up on life support.  We are not in that same place today, and I don't ever want to end up there again.  Tearing that piece of paper in two felt amazing. 

Ty's surgery went well today, but it caused a ton of bruising.  The VP shunt was placed back on the right side of his head, and his amazing sugeon used an existing hole in his skull for the tubing rather than drilling a new one.  Because of this, Ty's healing process shouldn't be as painful. 


To help you get a better understanding of what his VP shunt does: there is a tube running from the ventricles in his brain that is connected to a programmable valve placed under his scalp.  The valve opens to release pressure when the fluid in his brain begins rising.  On the other end of the valve is a much longer tube that runs all the way from the top of his head, down his neck, across his chest and into his belly (where the extra fluid gets dumped and reabsorbed by his body).  There is a large incision at the top of his head, a small one behind his ear, and another big one in his stomach where they reached up to snake the tubing all the way down.  It is that process that causes the bruising.

I just want to take a minute to tell you all what a great neurosurgeon Ty has.  He has two boys the same age as Ty and Gavin.  Over the weekend, he stopped by on both Saturday and Sunday to check in and say hello. Both days he had off, and both days he brought his son along with him to say hello to Ty.  After surgery today, he came up to our room to tell us how it went, then he reached into his pocket and handed me a picture that his son had drawn for Ty.  In the past, he has also showed us pictures of his son wearing Ty's "SuperTy" T-shirt to bed at night.  This is all so important to me because I know he is vested.  I know he cares about us and is doing everything he can to treat Ty as if he were his own.  This is how every doctor should be.  He has a warmth about him that makes us feel very comfortable.  It's like we've all known each other for years and I love him.  Some day I will have to tell him that!

I mentioned yesterday that we may be able to leave as early as tomorrow, but that is no longer an option.  We decided to keep Ty on TPN (intravenous) nutrition for at least another week at home, and there is a 24-48 prep period that is required before they can send him home with it.  They need to be sure that they have an accurate dose because it is very high in sugar.  If Ty's electrolytes are off, he may be at risk for hypoglycemia during the day when his pump isn't running.  We considered the pros and cons of staying in the hospital an extra night or two and how that might affect Ty mentally, but he is so incredibly underweight that we decided it is more important that we focus on beefing him up over the next few months if he is going to win the championship here. Ty was 27 pounds when he was diagnosed in August.  He is now only 22 pounds and he's grown about 6 inches since.  Ty has a lot of catching up to do.

So... onward and upward!  It's midnight, Ty slept all day and just informed us that he wants to "party all night" again.  Oh geez.  When Lou asked him why he likes to sleep all day and stay up all night Ty answered "Because!  That's why!"  Really?  That's the best you could come up with, Ty?  I'm exhausted and I do not foresee a restful night in my future. 

He isn't feeling the best tonight, but he's still pretty darn good considering he had surgery on Thursday, chemo on Friday, then surgery again just four days later.  He is SUPER TY!  Which reminds me... you may have noticed that the domain name on this blog is now redirected to http://www.superty.org/.  We just felt like it would be easier to share with a supercool URL like that, and we have plans to incorporate information about his foundation in the future (hence the dot-org...). Of course, the orginal blogspot URL will continue to work as well. 


Okay everyone.  Wishing you all a good night.  Ty and I are going to watch a Curious George movie and try to settle down for the night.  Thanks again for all of your love.  Hugs and kisses from Ty.

17 comments:

  1. Good for TEAM SUPERTY rip up that nasty DNR into many pieces, SUPERTY is gonna do this!!

    I have assisted many neurosurgeons in the OR and some can be so cold and heartless.
    I am so happy to hear that you have a compassionate doctor on your side, he sounds like the best!! :) :) :)

    TY will gain his weight back and then some soon enough with all that yummy ice cream, hot dogs and steak he is gonna be eating soon!

    Now for your shower...hmmm boogers or bugs, not sure which is better!! Gross!!

    Hi LOU!! Liking the new URL!

    Hope you all get some good rest!! Prayers, positive energy and love being sent your way!!

    Love
    Brooke, Eric, Emily and Owen <3 <3 <3

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  2. Big prayers for Superty, and YOU and Lou... SuperMama/Daddy!

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  3. We believe Super Ty can beat cancer! This was another of your amazingly uplifting and inspiring posts. You are easily one of the strongest mothers I "know." It's no wonder Ty's so super, too :)

    Still praying for Ty and all of you everyday! Feel the love!

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  4. Cindy you rock! The gloves are on and we are all ready for the rumble. Together with our strength, love, prayers and positive energy Ty will conquer. After seeing him yesterday just out of surgery I realized he truly has a warriors spirit! He looked better then he has! He is the most sweet, sincere, cutest little boy! I love him so much!

    You and Lou are my inspiration! Ty could not have chosen better parents and I do believe he chose you.

    Now onto to the booger bug situation. I am now totally freaked out about the showers at the pool, I have always stayed far far away from the walls and shower curtain but yuck that is so nasty. I can’t help but laugh every time I get in that shower now!

    Be sure to ask Ty how much Aunt Debi loves him and remind him that he is my sunshine! I will see you all soon, Love you, Deb

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  5. I so want this to be the last shunt replacement for a long time. On another note your hope is inspiring and will pay off in the end. Ty is such a wonderful child and he deserves to be a happy normal kid again, just like you want. I pray everyday that this happens. Love and hugs are sent from Canada!

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  6. Cindy, I am a total stranger to you and your family and I feel honored, privileged and humbled to be privy to your generous and honest innermost feelings about this amazing child. I am following your posts with daily prayer of Tehillim (Psalms) which is my personal arsenal of prayer offered to support your personal arsenal of human fortitude and good judgement. Farewell DNR!!!

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  7. Amazing post and update! I am glad you shared more info. on the shunt and what it does...I had no clue and often wondered.

    Ty looks adorable in the photos above, as he always does. You can't help but love him!!

    I am so touched w/ your story about your neurosurgeon. That is wonderful and he sounds like an amazing man. Glad y'all have him in Ty's court.

    Thinking of y'all,
    Jan
    Georgia

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  8. I have been following your story for awhile now and Ty is by far a superhero in my eyes. I do not pray much but I found this prayer and I have been saying it for Ty:

    "O most beloved Saint Gerard, who, like the Savior, loved children and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our son/daughter and ask God to restore our child to health if such be the holy will. This favor we beg of you through your love for all children and mothers.
    Amen" And I am going to keep praying until Ty is cured!!!

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  9. Cindy,

    What an amazing surgeon. It is such a blessing that you have someone who has a deep care and concern for Ty that is stronger than doctor and Pt. :O)

    A DNR… God, that has to be the hardest document that any family member has to sign. Being a mortician for years I was consistently faced with people having regrets for signing it and regrets for not signing it. I feel so deeply for anyone faced with that decision.

    Ty is such a fighter; it is amazing that he has been so strong through all of this. This week really has had to be a hard one for him. :O( On a happy note… HE WANTS TO PARTY ALL NIGHT :O) as opposed to being sad and sick!!! Love ya TY!!!!

    I know it has to be heartbreaking that he has been robbed of this time, but, the bigger picture is that he will steal the joys of life until he is grey and old!!!

    I pray for you and your family everyday Cindy, most of all for TY. Even though this is true, he would not be as strong as he is if it were not for his loving family. :O)

    Love you all,

    Mary E. King and the rest of the King family

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  10. How freeing that must have been to rip that DNR up! Good for you, you won't be needing it anyway!
    When Ty is better and cancer free and older, he'll probably remember very little of all this. It'll be something that you'll all put behind you and move on. Life will be "normal" for you soon enough. Unfortunately, it takes time to rid your body of this horrible disease. I'm so grateful that you have a doctor with such a caring heart. Keep staying strong Cindy and Lou:) My prayers are with you daily!!
    Michelle from NH

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  11. Really and truly, a great doctor makes a great difference. Trust is everything for you guys and it seems that you've found the right person for the job of Ty's "manager" in his corner. I love his personal investment in you all and we are all grateful that you have such a kind man at the helm of his treatment. This is a very important plus.

    Your blog entry speaks of how Ty has been robbed thus far, and in too many ways you are correct. Yet, he will never be shy on the love that surrounds him and when all of this is over, we will all help you see to it that we give him back as much of these months as we humanly can and make up for some of this "lost" time.

    Another thing that you spoke of is how much these events have shaped you. Believe this or not, your blog and ferocity for your child have shaped us, more than you can ever measure! I don't have any children but through this, I have deepened my love for all the little ones I am blessed to have in my life and you have taught me to be fearless in that love and definitely, more intense. This lesson has been prevalent most of my adult life, but it wasn't until the Story of SuperTy that I can honestly say that it penetrated the depths of me to my core. Your path of taking nothing for granted has us all walking beside you knowing this is an ultimate truth. I owe your family eternal thanks for this!

    Lastly, BURN THAT DNR!!! If ripping it up felt good, burning it will feel even better.

    Wishing you all some peace and comfort- looking forward to Ty being homeward bound....And a shower without a culprit!!

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  12. Cindy,
    You continue to amaze me. Good for you tearing up that DNR. Ty deserves that. He deserves to win! I completely understand that you feel robbed of his time. But he's still here---and fighting!!! Fingers crossed that because of all you do he will give you much more time back! I know he can do it--he's Super Ty!!!
    He has touched so many of us in ways that's incomprehensible. I never met you yet I am drawn everyday (and a few times a day) to your blog. If I don't hear anything I panic. I have come to think of Ty as almost one of my own. My heart breaks when he has a bad day or his head hurts. It's not fair. But hopefully all of this will make him a stronger person when he does get through this.
    Jennifer from NC
    BTW--I would really like your address so I can send some things my kids made for Super Ty and Gavin. Please email me--jenanndon@yahoo.com
    Thinking of you and your family.

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  13. Cindy & Lou,

    I am in my office crying again, you always get me! I am so happy that you tore up that DNR paper!!!! He is amazing, and he will beat this. Super Ty!!!!

    Joy Marielle
    Baltimore, MD

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  14. I always feel so sad, mad (at cancer), hopeful, inspired, when I read your blog. I know that these are not your goals, your goal is to work on healing that brave little man of yours. Thank you for sharing and please know that while we may never meet or have an exchange in any way, that I think of you & your family often and pray that your Super Ty is healed!!! I just want to hug him looking at his pictures here. Take care and good for you to keep plowing forward! Hugs!

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  15. Your entire blog had me in tears. You are soo amazing and your doctors are amazing and TY IS AMAZING. I am so happy that you tore up the DNR, at least for now. God knows you don't need that weighing on your mind.

    I cried so hard at the pictures of his poor bruised body and yet it gave me hope for a quick recovery. I pray that you get to go home soon, little man. You deserve a break for sure. I can't wait to see pictures posted of him running and laughing and being "normal" for a while.

    I look forward to one day meeting you all grown up, handsome and happy, living a life doing wonderful things. My thoughts and prayers are with you all, as always, as you continue to "kick cancers butt".

    All my love,
    Elaine

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  16. every morning i rush to check superTys blog and like everyone else i cry the whole time im reading, either a happy cry or a sad cry but ALWAYS cry. im sooo happy that you share this with us all so that we can all pray for lil superTy. you are an amazing family and i pray All the time for Ty and your family. i pray to God for a miracle for Ty. thank you for letting us in your life and Tys xoxoxo

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  17. YES!!!!!!
    Another step closer to healthy TY!!! Cindy and Lou, WOW, you are the main witnesses to the miracle that IS happening! Congratulations!!!

    Now make sure, Ty is comfortable. You know best. Always trust you instinct. Let Our Mother be your guide.

    We will continue to pray for love and health to continue your way and that the little rest you get, feel as deep as the oceans and give you the energy of the sun.

    God will continue sending you angels like your Dr. to ease the process. God bless him and give him the wisdom to do the best needed for Ty and all of you.

    We are all here for you. When you are happy, sad, cranky, frustrated, anything. You tell us and get it out of your system. "One who walks the road with love will never walk the road alone." -- C. T. Davis

    I will share with you and all this video:
    http://www.ted.com/talks/ric_elias.html
    Enjoy!

    Remember:
    Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.
    Albert Einstein

    Who takes the child by the hand takes the mother by the heart. - German proverb

    Your children need your presence more than your presents. - Jesse Jackson

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