Thursday, August 11, 2011

We had our first scare in a while, but Ty is okay

I didn't post yesterday because Ty got sick at night.  Now that he is feeling better, I am convinced it was something he ate, but at the time I couldn't be sure and it was very frightening.  After an evening of over indulgence in chocolates, yogurt smoothies and other treats, he started complaining of a tummy ache.  Totally normal, I wasn't concerned, but I felt bad that he had painful cramps.  The scary part came when he developed a severe headache soon after.  It was bad and I ended up giving him morphine for the first time in weeks upon weeks.  He fell asleep early, woke up for a couple of hours in the middle of the night (and he seemed fine), but after he woke again in the morning he started getting sick and throwing up again.  It was so scary, I thought I was going to have to take him in for a scan.  Luckily, Ty felt better as the day went on and he was completely back to normal by the afternoon.  Of course I spoke to his nurse and we hashed out the various things that could be causing his sickness, from the best to the worst-case scenarios, and since his head pain was isolated and didn't persist she felt he was fine and that the pain was probably caused by pressure building after so much abdominal discomfort.  I pray so hard that is all it is.

I just want to take a minute to explain where Ty is at with his diagnosis because I've had some questions lately.  Right now, Ty's disease most likely still exists, but it is microscopic.  In his most recent scans, no tumors are visible for the first time ever, and without a tumor burden wreaking havoc on various parts of his brain Ty was finally able to bounce back physically.  He was also weened from tons of meds, which helps him to feel so normal!  However, since Ty's cancer metastasized in May (meaning it spread), we are told that it is only a matter of time before his cancer reappears and it will, ultimately, result in him succumbing to his disease.  To that I say "Not necessarily!"  I look at him and I think... maybe he will just continue to improve and be that amazing miracle.  Maybe when his cancer spread, it only seeded itself in two places and those two tumors were removed completely in June and successfully radiated?  You never know, and it is possible.  It happens.  Period.  People have and do survive Stage 4 cancer and I will never lose hope for Ty.

So, the plan is to continue chemotherapy.  Chemo is a systemic treatment (meaning it attacks the entire body, head to toe) which is most important when treating metastatic disease because it is no longer a focal area and we can't anticipate if/where it may appear next.  But we are always open to alternative therapies.  In fact, we are currently in the very early stages of pursuing brain tumor vaccine options thanks to a great friend who has done so much to keep us informed of the newest, most successful experimental medications and we will keep you posted on our progress in that pursuit. Even if we can't get approvals or such treatments, or if Ty is not a candidate this time, we will never stop searching. 

I'm sitting here watching some crazy show called Toddlers and Tiaras and it is so incredibly ridiculous I keep getting distracted.  Is this for real?  I wanted to crack up laughing when one of the moms, after torturing her four-year old daughter through hours of hair and makeup, complained about how stressful it was to be a pageant mom.  Yeah, I guess hearing your baby cry when she is being forced to wear uncomfortable clothes and when she doesn't sit still to have her hair extensions put in it can be stressful.  Geez.  C'mon.  Get some perspective on what is important.  Do these moms get some kind of weird self-fulfillment if their daughter is decided to have the best fake tan, the best fake smile, the best makeup and the best fake hair?  Do they really believe that makes her the prettiest of them all?  And why do they care?  The most beautiful girls in the world to me have no hair at all. All children are so beautiful, why should they have to be told so in a competition?  I am so sorry to go off on such a tangent, but this whole thing is striking a cord with me because my world is just so incredibly different, I guess.

Anyway, tomorrow is Ty's one year anniversary of the day he was diagnosed.  I am working on a "Year in Review" video for you all, but it may not be finished until the weekend.  I don't want to rush it.  Lou and I are going to take Ty out on another "date" at the nicest restaurant in town to celebrate.  What a year it has been.  What more can I say.  Pictures soon!  XOXO.  Thank you.

9 comments:

  1. i never really know what to say because i really don't have a clue!! i don't how you do it!! My heart breaks for Ty because children aren't supposed to bear pain, not this way! They are supposed to be naive and innocent and fancy free!! I pray for you guys everyday and i pray Ty will beat the odds and he will!! God bless!!

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  2. I can't guarantee that it will work but it can't hurt. I talked to a woman, a cancer patient, who was told by her doctors that there was nothing they could do for her. She started taking Nutronix's International products and was doing well last time I talked to her. They are natural products and can't do any more damage than radiation & Chemo. Call and talk to Bob Bremner, the company owner. He is a very down to earth guy. If you don't like what he says or if it isn't for you there is nothing lost. These products help your body help itself. Nutronix's toll free phone# is 1-877-990-9951. Good luck! I pray for Ty all the time, keep up the fight! Love, Rose Pannebaker

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  3. Cindy -

    What a strange day. It is the 1 year anniversary of the most horrible day in your life, however, I say Happy Anniversary! I say it because Ty is here, defying the odds. I say it because he is healing and getting better. It is a day to celebrate! Super Ty is amazing! He is such an inspiration.

    Here is looking at 80 more anniversaries for Ty!

    My wish for you is years of dealing with the mundane, the everyday annoying things that kids do to aggravate us. I wish you all of the day-to-day frustrations of child rearing.

    Love and kisses from IL -

    Semper Fi,
    Maria

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  4. Well I am happy to read that he is doing better! I bet it was just all of those delicious treats he ate. :-)

    SO happy to read that Ty is continuing to do well!

    & those Toddlers & Tiaras Mom's are crazyballs! I can't even watch it- it makes my tummy hurt.

    Have a great date night, SuperTy!

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  5. I have been following your remarkable story for a couple months now. I think you are the bravest and strongest mother I know!! This is coming from a mother who son was diagnosed with Juvenile Diabetes at the age of 2 (he is now almost 14). How lucky Ty is to have such wonderful parents! So many of your blogs I read and start crying! I will pray for Ty every day and I am a true believer your son will win this fight!!!
    Sincerely ,
    Linda Thomson

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  6. Out of blogging but never out of heart and prayer.

    This post brings happy news. I believe in the miracle of Ty's health. Keep on top of that weed, just in case, but it is a knock out!

    I love you all!

    Remember:
    Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity.
    Henry Van Dyke

    “You can complain because roses have thorns, or you can rejoice because thorns have roses”

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  7. Hi! I just wanted to say that I read your blog every day and I have been since sometime last year. My cousin Renee always posts stuff about Ty on her facebook so I decided to follow your blog. I was reading through yahoo news today and came across an article that made me think of you. I'm not sure if you've heard about this but scientists are developing a new type of treatment for leukemia and eventually it will be used for other types of cancer. http://m.yahoo.com/w/ygo-frontpage/lp/story/us/423272/coke.bp%3B_ylt=Ag_XZVREzWzbp5X5KJVlvg6x.tw4%3B_ylu=X3oDMTF0YTVoZW10BGNwb3MDMjcEY3NlYwNtb2JpbGUtdGQEaW50bAN1cwRwa2cDaWQtNDIzMjcyBHBvcwMyNwRzbGsDaW1hZ2U-?ref_w=frontdoors&view=today&.intl=US&.lang=en&.tsrc=yahoo that's the link so check it out. I hope this helps! I pray for Ty every night and I will keep doing so until he is cured!

    Take care and think happy thoughts!

    Love,
    Marisa

    Brewster, NY

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  8. Cindy & Lou,
    You guys are amazing! Keep doing what your doing and stick with the FIGHT!!!!!!

    We're in your corner and always here for you!

    Thoughts and prayers are coming your way.
    Love,
    Janine

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  9. There's not a dry eye in this house! We're always watching and so are the angels....Smile Ty...tomorrow is another day!

    Love
    The Chase Family
    Newark, DE

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