Tuesday, September 13, 2011

Insomnia

Why do I do this to myself?  The house was quiet. Ty and Gavin went to sleep nice and early, so I tried to go through my paperwork.  I came across a number of printouts on various clinical trials and the late night googling began.  After reading three recent journal articles on AT/RTs (a tumor most similar to what Ty has), I am utterly depressed.  The prognosis is just so poor.  The mean overall survival rate for kids with Ty's cancer is 15 months.  Ty isn't even there yet!  I am so mad at myself for doing this.  It simply isn't healthy for my body, mind or soul.  

This is what I need to keep focusing on.  This face.  This amazing little boy who will beat the odds, and who looks better than ever.  Anything is possible. 

 
There is nothing average about Ty, and he will not be meeting the average expectations when it comes to his prognosis. Right now he shows no signs of even having cancer and maybe that's because he doesn't?!?! The radiation worked wonders on the original tumor, which looks to be inactive since radiation was completed in April... and there's no reason to believe that the two new tumors haven't met the same fate. Now we are treating him with chemotherapy to attack any remaining microscopic disease, and praying with every ounce of our being that it never ever, ever, ever, ever recurs. I have seen the power of prayer during my darkest days. Please keep them coming.

Ty will be getting a lot of therapy at home over the next year, and we even got the green light from his doctor to enroll him in a small pre-school program.  We are finally breaking free of the bubble we have been in over the past year, and I think it is going to work wonders on Ty's esteem.  I simply can't wait to see him singing songs with classmates again.  Of course, I will stay with him in class when all the parents leave because of Ty's physical disabilities, but I don't think three-year olds will be put off by that in any way.  They will love meeting Ty, and he will love meeting them, I am sure of it.  I feel the sensation of the bubble popping and I am as excited as Ty and Gavin are when I get crazy and blow bubbles in the house for them :) 

In addition, Ty is beginning a rigorous schedule of at-home physical therapy, occupational therapy, speech/language and special education.  This is going to be a busy household again!  You should have seen him with his physical therapist today, he was such a sport!  I am excited and I have visions of a more active school year with a house full of laughter.  Now I just have to figure out what to do with Gavin :)  I am so afraid of germs, I think I will wait until at least January before I sign him up for anything.

Anyway, it is taking me a while to address the title of this post.  I have been battling insomnia lately and I can't figure out why now more than usual.  Every night when I try to sleep of course I worry about Ty (nothing new there), but lately I have been consumed with thoughts about a handful of other cancer kids who have crossed my path over the past year or so.  Some that I met during our very first hospital stay, some that I shared a room with on M9 at MSKCC and some that I met more recently through various acquaintances.  I have been bothering my husband with my worries, too... "You know who I haven't seen at the hospital in a really long time?"  I name a couple of kids, describe them to Lou, and he reassures me that this one doesn't live in New York, or that one may be done with treatment. 

Maybe I'm so restless because of pediatric cancer awareness month.  I have been actively reading up on various causes and trying to share more information so maybe that has my mind racing a bit more, but I don't see why I am losing sleep over it so much now?  When things at the Campbell house are better than they have been in over a year!?  I don't know, but I am reaching my limits on worry in general.  I think I used to sleep better in a hospital bed than I have been at home lately.  It's just so damn unfair that so many kids are suffering every day.  They don't get to be kids, there is so much hurt among the most undeserving population of all and it's really getting to me! And, I guess part of me is just living in fear, waiting on pins and needles for something to go wrong for Ty again.  The numbers aren't in our favor and that scares me, of course.  But then again, the numbers never were in our favor and Ty Campbell pulls through when he's not supposed to time and time again. 

It's midnight and once again I'm pretty wired.  I think I'll make some tea.  Last night, Ty was totally restless, too!  I think it might be contagious because I'm lying there next to him.  We were both awake watching cartoons from 2-4AM.  I hope that doesn't happen again tonight. 

Before I forget, I have some good news to share!  Ty has met another huge milestone this week.  I removed his special needs bathing chair from the bathtub, and he has been taking baths with Gavin again.  It has been such fun watching the play in the tub together, neither of them want to get out!  Tonight they were both totally pruned.  Check out the 'do. 



You can be the match!
Here's something you can do.  Over 13,500 kids will be diagnosed with cancer this year.  The majority of whom will have Leukemia or another blood cancer where a bone marrow transplant may be required.  Please join the bone marrow registry and order a cheek swab kit.  It is so easy to do, it is free, and it just might save a life.  Thank you :)
http://www.dkmsamericas.org/

Goodnight everyone.  Hopefully some tea will do the trick.

10 comments:

  1. the future can be so scary especially when everything has been going so well for ty! You are probably not used to the good news!!! Have faith and keep praying!! Stay strong and keep your head up!

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  2. LOVE the pic of Ty in the bath. SOOOO dang cute!

    I am also a huge worrier. I worry about even the smallest things, so I know w/out a doubt I would be just like you if I were in your shoes. It is normal to worry! But, you just have to let yourself believe (and know) that Ty is in Gods hands and he is going to come out of this to live a healthy, happy, and full life.

    Hope y'all continue to have a great week!

    Jan
    Georgia

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  3. Philippians 4:6-7
    Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. (NLT)

    I know it is easier said than done. Keep your head up and know God has a perfect plan for everyone. We live in a world with many evils. Good news is God has defeated all of them! Soak it in, relish in Gods perfect creation! Those pics are awesome! Ty has blessed and touched so many lives and so have you! I hope you find peace in that alone. Thank you for sharing this journey.

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  4. I signed up (: Been wanting to for ages now! Thanks for putting up the link. You and your family are always in my prayers.

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  5. I am a constant worrier, a nervous nellie. Somebody once told me to always think about "what is", never "what if". What if, could drive you insane. What is, is that Ty is doing wonderfully and we'll take it:) Live and be happy with the moment. Enjoy every second of that beautiful little boy. I know, easier said than done but, try and ask yourself that when your mind starts to wander. Get some rest:)
    Michelle from NH

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  6. Cindy & Lou,

    Ok, now is not the time to panic, Ty looks incredible. I just took the liberty of researching very briefly Ty's cancer on Google. Not productive! However, we can all tell you not to worry, but we all know that its easier said than done.

    But. . .Ty has beaten the odds over and over and over again!! There was an article I read a long time ago in college, and it was about HIV and to make a really long story short, there were many doctors who believed that people lose the will to live and that is the reason they die. I'm probably not wording it right, it was a long time ago, but it completely made sense when I read it. A person was living with HIV for 10 years and never knew they had the disease, but once they were tested and found out they had this deadly disease, they eventually died. Some of the doctors believed that if they never found out they had HIV, they would have continued to live longer. Basically that losing your will to live and your spirit can kill you. I will google the article.

    Your son has an incredible will to live and his Spirit is so strong and he has such a strong support team!!!! I don't know if any of what I said made sense, you would have to read the article, but it did make sense. I truly believe that Ty's spirit and will to live has a lot to do with all of his progress and shocking the doctors!!!

    I see the photos and read your blog and I am like this little boy is amazing!!!! He really has beaten all the odds!! Hes a baby, (although im sure he would beg to differ and say he is a big boy!) and he has been through so much but he continues to fight the fight! My 3 year old enters the room at the doctor where the scale is to get weighed before he even gets into the examining room and he is screaming like a lunatic! Your Ty is a different child, he just is, and he is going to pull through this!!!

    Try to sleep and get some rest and not drive yourself insane. I know easier said then done.

    Thinking of you guys always!

    Joy Marielle
    Baltimore, MD

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  7. Cindy,
    Only God knows when he is ready, we all strive to get to Heaven, I know when Ty is ready he will have a one way ticket, first class :). Ty's beautiful smile has touched my heart once again, he is such a charmer, I just love that kid! Nothing anyone can say will ever ease the worry of a Mother, once a Mother always a Mother, I am a Mom and wake up everyday and thank God for my blessings, and for yours and other children fighting this disgusting thing. Thinking of you all, and thank you so much for sharing your son, he is such a blessing.

    Leslie

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  8. Oh no Cindy this insomnia is not OK! Try doing some stretches that feel really good to your body at night. It feels so good if you just get on the floor and do it. And best of all it will take the energy from your head back into your body. Our minds can be our worst enemy!

    I know the statistics are so scary. Cancer probably sucks more than anything.

    Ty is doing great. His survival is incredible and I'm not comparing it to any yardstick. There IS hope and we have already seen it. I just keep focusing on all of the people who survived something just like this, and praying that Ty continues to heal and beat cancer. I feel our prayers are being answered. I do not feel like wavering on this because of fear and thoughts of other kids who did not make it. I mean, at times of course the fear gets the best of me, but even then I am holding onto the better possibilities which I know to exist!

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  9. Hey wanted to say hi, really miss you guys but kinda happy i dont see you :-) and about the insomnia, i dont see what the problem is? im up everynight? oh wait i work nights and sleep during the day (guess its not just the fact that i take blood that makes me feel like a vampire) :-)
    I love the pictures.
    Daniel S.

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  10. I have FINALLY signed up and now await the kit that can potentially make a difference. Thank you for the inspiration and knowledge you have provided in guiding those of us who wish to be a part of the solution. It will be an honor and a privilege to be a match. With much love to you and yours, glad things are going well. Ty looks amazing and we are so ecstatic that these are better times for the Campbell's.

    Two Buddhist sayings about worry:
    “If the problem can be solved, why worry? If the problem cannot be solved, worrying will do no good.”
    “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.”

    As a fellow worrier (and one who anticipates when the other foot will drop), I tend to have to say these ad nauseum to redirect my thoughts. Wishing you restful nights, sweet dreams and no worries.....

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