Wednesday, April 4, 2012

It comes and goes

Ty says this several times a day.  Several times an hour.  He's talking about his head pain.  It seems to be less severe, but it's always there.  Lingering.  It comes and it goes no matter how much morphine or oxycodone he is on.  It hurts just to admit in writing that my four-year old is even on such medication.

Cancer is relentless and cruel.  Even now, when he's cancer free, my baby suffers from more pain that I have ever known in my lifetime.  I always know it's starting up when he begins to sweat profusely.  Then he opens his mouth over and over again because, for some reason, this provides a little relief.  I guess it makes sense anatomically, if you think about how the brain stem is aligned with the throat, somehow opening the jaw may relieve some pressure. Whenever I look back on pictures of him as a toddler it makes me sad to see that he was doing this for a month or so before we had any idea how sick he was.  How could it be possible that something so grossly imperfect was growing within something so incredibly perfect.


Kayla, my sweet niece, painted this for Ty a long time ago.
How can I even sit here in this hospital room watching my son suffer like this?  No mother should ever have to do this. To watch how he is unable to voluntarily shift his head, move his arms, scratch an itch, wiggle his toes.  Countless people come in and out and offer him stickers, play-dowh, crayons, because they don't know that he can't do these things anyore.  Sometimes I wonder if anyone even has the capacity to imagine being in my shoes unless they've been here themselves.  I know I didn't until I had no choice.  I heard sad stories about others all the time, and of course felt sad.  But it was in passing.  I prayed for them and went on with my busy day.  Which is fine, I certainly don't want anything else, but it does make me feel good about writing this blog and sharing Ty's story more intimately.  Not because I want more sympathy, of course not (!), but because I think there is so much value in simply sharing.  Helping others understand that I am you and you are me and cancer affects everyone.  Even our children.  Together we are going to change this. 

I get through every day without too many tears because I have profound, undying hope that lies deep in my bones. It is everlasting and it brings me peace. I trust in God completely and wholeheartedly. During the times when that trust is challenged most, that is when I am at my weakest. When I free myself and remember that all of this is in God's hand, it always has been, I truly find peace. 

I just want to throw this out there that I do not judge anyone by religion or lack-there-of.  If you are reading this blog and care enough to follow Ty's story and wish healing upon my family then your heart is good and kind and I love you and thank you tremendously.  I call it God's will, you may call it something else, but we are all family and I appreciate any positive thoughts, prayers, healing energy, or scientific rationale that you send our way.  We are forever grateful to each and every one of you and we are so lucky to have you in our lives.  Ty has had an amazing impact and it gives us so much strength knowing how many lives he has touched.

Today Ty is adjusting to his final steroid taper.  Meaning, his dose was cut in half yet again.  Over the past week he went from 16 milligrams of dexamethazone per day to only three.  With each reduction in dose, his heart rate becomes more and more normal.  There is also an adjustment period where his head pain often increases until he gets used to the new level.  All of this is wonderful, because it shows that he isn't suffering from increased swelling at the brainstem when we lower the steroids.  It means we may have seen the worst effect from the radiation necrosis - hopefully. 

I bite my tongue, of course, because soft tissue necrosis, especially in such a critical area of the brain, is extremely dangerous.  The necrotic/dead tissue, unless surgically removed (which is not an option for Ty) only encourages new necrosis to begin as it cuts off the blood supply to the healthy tissue.  We hope and pray every day that Ty's body can naturally reabsorb the dead tissue in his brainstem before it causes any such ripple effect. So, although we are not out of the woods (are we ever, knowing that Ty's cancer can also relapse at any moment?), but things are looking good.

In the meantime, Ty is off treatment.  No chemo for a while.  We are focusing 100% on his physical recovery for now.  Besides, I believe with all of my heart that Ty has won his war with cancer.  Now we need to "stop the bleeding" and focus on repairing the damage done.  We hope to transfer to a new inpatient facility tomorrow or Thursday.  It's called Blythedale and I am very excited about it.  They are known to be very aggressive with physical therapy and I think Ty will do very well there.  It is also located just 45 minutes from home so I will finally get to see Gavin regularly.  In addition, we are trying to get Ty approved for daily hyperbaric oxygen therapy at Phelps Memorial in Westchester, and we will continue to come to Sloan Kettering every two weeks for his Avastin infusions.  We have a plan!  I feel good about it. 

Ty continues to talk about his friends at school several times a day. Makes me so happy and sad at the same time.  We look through the drawings they made for him and we talk about what they might be (a rainbow, a bowl of spaghetti, a truck, a flower patch).  We look through the photos that were taken while Ty was there and talk about his favorite preschool activities (snack time, circle time and the car mountain).  I want him to get bedda.  I want him to go back to school.  I miss those kids just as much as he does and I wish things were different.  That's all. 

13 comments:

  1. Cindy, I have been reading your blog daily for about a year and a half. Ive only commented a couple of times because I am at such a loss for words. I have a 4 year old boy too, and I just cant imagine what I would want to hear... what would make me feel better. I just have no idea. So I just want to say that I truely love you and your whole family. And I check in and pray daily and have for well over a year. (Ty has his own button on my favorites bar :) And he has touched heart, my life and my realationship with my own children as well. I am forever changed because of your little guy. He is always in the back of my mind... and I like him there because he makes me a better person and a better mom. And you make me want to be a STRONGER, more positive person and a better mom. Thank you for sharing your life with us! Love and Prayers, Tamra

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    1. Ditto, ditto, ditto!! Tamra, I think you said it beautifully! I too have a 4 year old and I know I am a changed person after reading about Ty and his family. Thank you Cindy! For you touched so many lives....more than you know. Many blessings to you and your family! You are one amazing bunch!

      Hugs,
      Kim (kent, ny)

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  2. I too have been following Ty's story and am the mom of a 3 year old little boy. I think about Ty and your fsmily each day, checking in and praying for him, to be free of pain, of disease, to get to be a little boy :)

    I have only heard wonderful things about Blythedale Children's Hospital, hopefully this will be just what Ty needs during this next step.

    Sending healing thoughts and prayers to all of you.
    Stephanie

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  3. Today is my 1st time reading your blog, I wanna say that I am truly sorry for everything you guys have been going through. I too have a 4yr old son and I can't imagine going through this. Your family is now on the top of my prayer list. Love and hugs from Columbiana, AL.

    Emily Kemp
    Columbiana, AL

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  4. Cindy-
    I read your blog everyday and check in frequently for updates. I too, am the mother of a child battling cancer. My daughter is 2 1/2 and your words so echo my thoughTs and feelings so articulately as I watch helpless as my daughter suffers as well. You give me such strength as I fight this battle with my little girl. You have put into words the feelings and
    emotions that I find impossible to express... Your
    family and Ty are in our daily constant prayers. I am forever with you in this journey.
    Keri, NY

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  5. I light candles at church for Ty and all of you. You are an amazingly strong and faith filled woman and family. You are teaching us caregivers what goes on and some ways we might help in the dark hours. God gives us chances to use our trials, and your blog is not only good for your release, but to help us know how to pray for you and others. God's healing miracle be with you as we look forward to celebrating resurrection and new life! Dear GOd, it is a great time for a miracle!

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  6. Cindy i also am a mom of a five year old and the pain your family is enduring is beyond comprehention but I too am a changed person because of your family. I dont sweat the little things anymore. I appreciate every moment with my daughter who was a miracle to me cause i tried for 10 years then all of a sudden i was pregnant at 40. I am always checking on ty andwait patiently for updates. I know he is going to be okay. He has to. Your friend fran, levittown,ny

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  7. Cindy i also am a mom of a five year old and the pain your family is enduring is beyond comprehention but I too am a changed person because of your family. I dont sweat the little things anymore. I appreciate every moment with my daughter who was a miracle to me cause i tried for 10 years then all of a sudden i was pregnant at 40. I am always checking on ty andwait patiently for updates. I know he is going to be okay. He has to. Your friend fran, levittown,ny

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  8. Cindy i also am a mom of a five year old and the pain your family is enduring is beyond comprehention but I too am a changed person because of your family. I dont sweat the little things anymore. I appreciate every moment with my daughter who was a miracle to me cause i tried for 10 years then all of a sudden i was pregnant at 40. I am always checking on ty andwait patiently for updates. I know he is going to be okay. He has to. Your friend fran, levittown,ny

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  9. Cindy I check your blog daily and get a little edgy when you don't write for a day or two. I am the mother of 4 children under 9 and I can't possibly imagine what you are going through. Your story has had a large impact on my life and the way I value every second with my children. I look at my son who is the closest in age to Ty and I can't possibly imagine...I don't let myself imagine. God definitely has a plan for you and Ty..he brought you into all of our lives that follow this blog to remind us of the things that are most important in our lives and to treasure each day because they are truly all gifts. Know as always over the last year you and your family are always in my prayers
    Michelle

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  10. I've read your blog since a co-worker posted a link for it over a year ago. I used to work at Bylthedale over 10years ago as a teaching assistant in their school and my mom is still a secretary there. Hopefully Ty will be able to attend their preschool program when he is strong enough, in between his therapy sessions. At Blythedale you will meet wonderful therapists, doctors, and teachers who will push Ty to make as many goals as possible and treat him like a "regular" kid.
    I thought of Ty and all your efforts to raise awareness for childhood cancers today, as today would have been my cousin's 30th birthday. Sadly she died 15 years ago from a rare cancer after a 3 year battle and her parents created an organization to raise money to help fund research and new treatments at the hospital where she was treated up in NH.
    Best of luck at Blythedale! If he ends up going to school, stop in the main office and say hi to "Linda"

    PS-I will pass your blog onto her :)

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  11. I have a 4yr old daughter and have been following this blog for well over a year. I find it neat that alot of the followers have 4yr olds! There are many children Tys age that say a prayer to God each night for healing and protection over him. Its a wonderful thing! When Ty gets to Blythedale be sure to post where we can send a care package with goodies.

    Love from VA!

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  12. That beautiful picture looks like a Louie and Little Richie combo!

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