Wednesday, June 15, 2011

Don't panic

Lou and I are trying desperately to hold it together tonight.  Trying to be patient - not to panic.  Ty's speech is getting worse.  When he tries to clap his hands or bring a cup to his mouth, he can't do it.  His aim is off by a mile.  With the cup he not only misses his mouth, he misses his entire face.  Those are all tell-tale signs of problems within his Cerebellum, which is the part of the brain where his cancer has recently spread.  It affects coordination.  His doctor says that this it sounds like more than side effects from chemotherapy - that something neurological is going on. 

What is making this even harder to accept is that I've been trying so hard to deny that the cancer even spread to that area.  I was sure that if I was positive enough, if I believed with enough certainty and if I prayed enough, that the next scan would show that there is no sign of cancer in his Cerebellum after all.  Obviously we are on our knees, begging.  We want so desperately for this to work.  Just tell me what I need to do and I'll do it.

What we are holding onto is the fact that tumor destruction can be just as devastating as tumor growth.  Meaning, that if the chemo is blasting those tumors with enough force, it may cause bleeding and swelling in the brain that can cause just as many symptoms than if the tumors were to grow.  I am certain that this is what Ty is experiencing because it came on so strong in just two days time (and, two days following the administration of some heavy duty toxins).  I think I would have noticed a more gradual progression if his cancer was breaking through the treatment.  It's just hitting us so hard because we were in denial that these Cerebellum tumors even existed (I know what the scans showed, but I didn't want to believe it).  We saw Ty doing so well just days ago, it is just so friggin' hard to see him fall back down again like this.  It's like there is a weight on my chest... my heart hurts. At least he handles it like a champ.  Someone mentioned how in his video he always manages to keep a smile on his beautiful face.  That is so true!  Today he smiled and laughed at how funny it was when he was trying to clap!  I had to hold myself together, trying not to break down and cry right then and there - his smiling face helped me, but he still saw the tears.  Sometimes I just can't stop them. 

We talked about it while we snuggled up in bed tonight.  I told him to keep up his fighting spirit and he said "okay" so sweetly.  I told him that I hate cancer and I need him to keep being so strong and he said "okay, I hate cancer, too."  He also smiled and said "I wub you" as he drifted off to sleep.    I wub you, too, Ty.  I wub you so much.  Big much.  HUGE much.  I love you the most.  I love you infinity.  You are my super hero and you can do this.

We are scheduled to return to the hospital for a check-up and bloodwork on Friday.  His doctor mentioned getting an MRI, but I'm not sure I want to.  If it is going to be unclear as to whether they are seeing tumor growth or destruction, then I don't even want to know.  I've had enough ambiguity.  The treatment is done and we have to wait out the course of this cycle anyway, so in my opinion I would rather get a more definitive scan three weeks from now (unless the doctors convince me otherwise).  I just hope he improves before Friday so we can get through these days a little easier, and so Ty can enjoy himself again.  He has been pretty much sleeping for the past 48 hours.  This new chemo has really knocked him out.  When he is not sleeping, he is feeling pretty bad in general, with the exception of a few 15 minute intervals where he just seems to snap out of it.  Oh man, I wish you could see him during those times.  You wouldn't believe what a sport he is. He is just the best kid in the world. 

Goodnight everyone.  Thank you so much for caring about our special boy.  With love to you all, The Campbell's. 

23 comments:

  1. I can't remember how I stumbled upon this blog a few months ago, but I have been reading ever since. Coming back every day to check on ty's status and to see how your family is holding up. You all have been in my daily prayers and I am praying extra hard now that ty feels better pronto from this past round of treatment. If anyone can beat this ty can. 3 of my grandparents, my uncle, and my cousin have all battled with cancer and I know first hand how painful the journey to recovery is with all the ups and downs. I don't have children yet myself (I'm only 22) but I've always babysat/nannied (the children I have watched are like my little siblings) and I can't imagine how hard it must be to watch your precious baby go through this. I promise to keep praying hard for ty and I wish you and your family all the peace, happiness, and cancer freeness in the world. -Shannon C.

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  2. I've known so many people with cancer, and what I've always heard is that when you're not affected adversely by the chemo, it's not really doing anything. In other words, the people that don't get sick, aren't being cured. Still praying so hard for all of you!

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  3. BELIEVE!!!! I do believe it's all gonna be alright....Ty is fighting with all his might and the chemo IS going to work. Keep the faith Cindy and Lou! We are all pulling for the Campbells......especially SuperTy!!

    All my love,
    Elaine

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  4. It must be the chemo working! Why would all of these symptoms as you say, come on so suddenly.
    Keep on reminding yourself how well he was doing just before he got the toxic drugs. I agree with you about not going for another scan unless the doctors insist. Things will calm down... Super ty is doing his job..
    Sending you all of our love, admiration and prayers

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  5. Cindy,
    A few years ago a friend of mine was diagnosed with 3 tumors in her brain. She fought - hard - to overcome her cancer. She insisted that she would be OK. She told everyone that she would be here for her son who was just a teen at the time. She never once gave up hope. They kept telling her how grim the situation was - she didn't even listen. She "knew" that she would be OK. We prayed and prayed as did many others. 6 years later..... she is Cancer FREE and has been for about 2 years now. She fought the good fight and never gave up hope. I pray the same for TY everyday. Hang in there.... hang on.... keep praying and follow your instincts. Sounds like cancer is dying all over the place in your super fighter! I have never met Ty and I love him and pray for him as much as I do for my own children. Many people are praying for that little one. Someday you will look back on this when you are CANCER FREE! And we will all rejoice with you!

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  6. I'm so sorry Ty is suffering so bad right now! Believe that medicine is killing the cancer and unfortunately affecting so much of the rest of him as well. You always say as long as you dance with him at his wedding, it is all worth it! Don't ever forget that! The world of friends and supporters will be dancing with you both because it will happen! You are so strong and so is Ty!! Xoxoxo Praying everyday for only the best results and sunshine in your life :) -Erin

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  7. I am praying so hard for Ty and for your family. Stay strong. Ty is fighting so hard. I can only imagine how hard it must be to stay positive but just keep looking at that beautiful smiling face and I think he will give you the strength. My daughter and I were talking about Ty last night. I was telling her about the video and how adorable he is. He has touched so many hearts.

    Ann from Buffalo

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  8. I know the battle seems like it will never end and you feel totally helpless in the situation. Continue to keep up the fight and keep the faith. One day you will all look back on this time and see how truly strong you all were. I pray for you and Ty everyday. God bless you both.

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  9. It breaks my heart to read that Ty is struggling. Praying for strength the next few days and that the toxic drugs are working their magic.

    Stay strong.
    ~Jessica
    IL

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  10. I know I'll stay positive as long as you all do. I do not know Ty or your family but I have connected with this story and I have such faith that it will end well. Ty has beaten the odds before and will continue doing so with the help of everyone that loves him. Hopefully he feels better soon.
    Love and prayers from Canada!

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  11. Cindy, I think you are correct...it must be the chemo doing it's job and not the tumors growing, it only makes sense. WE have to believe this!!

    I watched the video from yesterday periodically ALL day long! I love that song and the pics were even better! :)

    Thinking of y'all ALWAYS,
    Jan
    Georgia

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  12. Hi Cindy, Ty and the entire Campbell family have become a part of my life and I am praying for all of you with all of my heart. Ty is a fighter and I know he will beat this too, just keep the faith! My sister's friend Carrie who was like another sister to me was told that she would never live to see 18 and they were wrong. Spirit is a large part of getting well and I believe Ty has that spirit. Feel better soon Super Ty!!! God Bless

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  13. Cindy I am convinced the chemo is doing its job and kicking cancer in the behind! I started reading your blog a few months ago and I check in every day. I don't always comment, but I pray for Ty and your family every day. Keep the faith and keep us posted. <3

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  14. Cindy -

    How can he not be effected by the toxic drugs that were pumped into him. They are doing their job and getting rid of the cancer. I think you are right to want to avoid a scan that would be ambiguous at best. Super Ty's little body is fighting, and all of his strength is going to that. It is good that he is sleeping a lot while this is happening. And amazing that he can laugh at the side-effects of the drugs. I believe that you are watching the destruction of the cancer.

    I pray for continued strength - emotional and physical - for you, Lou and Ty.

    xoxoxo,
    Maria

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  15. Praying so incredibly hard for lil Ty and your family. Please please keep us posted...need to hear lil Ty is doing better. Its crazy how worried i get to hear when lil Ty is not feeling well, almost as if i knew him, he definately has been in my heart from day one since i came across his story and i feel tremendous love for him and your family. Praying praying praying......day and night

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  16. prayers, prayers, prayers. Coming your way forever, and until you say you don't need them anymore. Keep the faith. He's so strong. Sending you strength, courage and love. The McCarthy's

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  17. God Bless your family.. I am praying for Ty.. He is such a fighter he will beat this. You are an amazing mother.. I hope it brings comfort for you to know there are a lot of people out there you haven't met that are on this journey with you
    Keep the faith.. He WILL get better

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  18. Our prayers and positive thoughts will NEVER faulter..
    Hold on Campbell's... Stay Strong.. Keep those hands up!!!!
    SuperTy you got us in your corner...
    All our love,
    The Ferranti's

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  20. Cancer is dumb!!!!! So many people big and small....I look at Ty's blog everyday and just wish and hope to see that Ty kick cancer and it is gone for good. My Dad also has cancer...I just pray everynight that these two strong people fight with every ounce of energy they have...and they will I know it...you can see it in their eyes...so fight Ty because we are fighting right along with you!!!!

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  21. With Cancer, sometimes things have to get worse before they get better. I believe and pray that this is the last time they get worse.

    God Bless Ty and your family. This blog is truly an inspiration for us all.

    Kyle in Milwaukee

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  22. Good morning. I am sending prayers filled with light, love and positive energy. May you be guided along this journey as Ty manifests perfect health. We have a mutual friend, Marlyse, and she told me all about you. We have a foundation, Friends of Jaclyn, and if you are interested in learning more about it, visit our website: www.friendsofjaclyn.org

    Always with hope, love, and prayers,
    Lynda Murphy
    www.caringbridge.org/ny/jaclyn

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  23. Cindy - It's the chemo, I just know it is. I feel it too. Cell destruction almost killed Rich - literally, it was that unexpectedly successful at destroying the cancer cells that his body couldn't handle it - but the doctors stepped in and he made it through. The symptoms coinciding with the chemo just seems like too much of a coincidence to me. I feel strongly that this too shall pass and Ty will get beyond these incredibly tough days. So will you. I'm sure you're tired, you're worn out, but more importantly you're strong and an incredible mom and wife. Remember that and keep putting one foot in front of the other. YOu'll do this!

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