Saturday, March 24, 2012

An answer, finally, but not the one we hoped for

Most likely and most importantly, Ty's doctors do not think we are looking at progression of disease.  So, what Ty has been faced with isn't likely cancer-related.  Phew - sort-of.

The findings are still pretty bad.  I have so many emotions to share... SO MUCH to tell you all, but I don't have the energy to expand on all we've been through tonight.  My eyes are bleeding after all of the tears I've shed today.  I have missed sharing with everyone, though, and I look forward to writing more when I can.  It is very therapeutic for me, especially during my most stressful times (and this is surely, one of my most stressful times).

I was unable to post an update because Ty hijacked my laptop for a few days.  His head pain became so severe he couldn't look up at the TV so I had to prop up his Max and Ruby episodes bedside.  As you probably remember, a couple of weeks ago we ended up in the hospital for some very similar symptoms.  He had a CT and an MRI but both scans were free and clear of any issues.  Cancer-related and otherwise.  No swelling or inflammation was seen.  No intracranial bleeding.  No bacterial infections grew out on the cultures.  At the time, his doctors dialed up his shunt to try and pull off more CSF fluid for a culture, as well.  Nothing.  It must be viral.  Since he seemed to be improving slightly at the new setting, and his overall weakness was improving, we went home to wait out the nasty bug without resetting the shunt.

After a week of getting better little by little, Ty began to decline quickly.  On Monday, his head pain was bad enough that I had to increase his morphine.  On Tuesday, so bad that the morphine was around-the-clock.  On Wednesday, we were back inpatient looking for answers.  Could this still be a virus 19 days later?

The first step was to dial down his shunt again.  Perhaps it was too much for him and he was certainly showing signs of pain related to too much pressure.  It takes a day or so before any improvement would be seen, so we had to wait and see.  Ty only got worse.  Last night I noticed just how weak he was getting.  He went from .5 milligrams of morphine every four hours to 1.5 (and more when necessary).  His right side - the strong side - was getting just as weak as his left.  Last night I noticed he couldn't pull his right arm out from under the covers and he couldn't put it around my neck to snuggle - I had to help him.  I immediately told the team and they ordered a CT scan.  It looked great.  Ty's ventricles were, in fact, perfect.  But he was far from it.  We waited until we saw his primary doctor later today, and he immediately ordered a follow-up MRI.  We were all thinking the same thing... but no one dared say the word "tumor".  Regardless, something was happening.

The MRI showed that there has been another post-radiation episode.  And a serious one.  Ty has significant swelling in the medulla - the area where he received radiation - and it probably built up so slowly that it was undetected in previous scans.  He was given a stress dose of steroids to try and reduce the swelling and will continue on a course of steroids to treat the swelling over the next few days.  I'm confident it will work wonders, yet I'm terrified at the same time.  His doctor never makes any promises that he can't keep. He said that there is a good chance that Ty has suffered some permanent damage as a result.  To what extent, only time will tell.  All I can tell you is this.  Tonight, the morphine was making Ty so itchy and he couldn't even lift his good hand to scratch his own nose.  I have been doing it for him.  I know with all of my heart that this will get better.  I know that Colleen was right in her comment yesterday, that all of our highest goals for Ty are still attainable.  He gets knocked down over and over and over again... but he will walk again some day.  And he will throw a ball.  And he will paint a picture.  And he will hug me tight with both arms around my neck again.  

In a panic, I asked his doctor if we went too high on the doses during radiation.  After all, he had a serious bleed that left his left arm handicapped back in December, and now this.  I already knew the answer... Yes. We gave him a very risky dose of radiation because we had no choice.  Ty's cancer is a very serious one, and our only chance was to take such a chance.  Post-radiation side effects like these can go on for years and years and years.  I can only imagine how prematurely old and gray I will be by the time Ty is in his twenties.  While he is out surfing in the sun, nonetheless.  That's how I like to picture him as a young man, anyway.  Handsome and carefree with sun-kissed skin.  Changing the world, and enjoying every ounce of life while doing so.  He is so special.  I thank God every day for him.  Several times a day.

Please say some extra prayers for his healing.  Thank you, everyone.  We love you all so much.

Ty waiting for CT.  Our little fighter with crazy bed head.

6 comments:

  1. You ask yourself where do I get all this strength to battle everything you are going through.....God! He only gives us as much as we can handle and although it seems as if you're drowning, you hold on to hoe & your faith!! I've been there took care of my immediate family, mother, father and brother with terminally I'll cancer. Times I felt like giving up I would pray & find that strength. Ty "The Fighter" & your family are in my prayers!!
    P.S. One day you'll be thankful fr every grey hair & say it was worth it I'm seeing my son graduating, getting married, having his own children & so on!!

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  2. I'm so sad that Ty and you and Lou are suffering like this, once again. What terrible news.

    The radiation was a risk you had to take. Let's focus on the best case scenario here. Lots of things can go right from here on out. No one gave into the cancer and no one is giving into radiation side effects. I wish I had a more firm solution that would take all of your worries away, but for now all we can do is focus.

    My prayer is for nothing short of the best outcome. Ty growing stronger and stronger. Ty surprising everyone again. Pain-free! Side effect-FREE. Cells regenerating. Healthy cells taking over. Radiation gone. Ty running, jumping, reading, doing math, growing up healthy....

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  3. Cindy, I am so sorry to read this! I will pray with all of my heart that Ty will be better soon and that this will not go on for years! He some much deserves to finally become a healthy, happy, strong and active litte boy!
    Sending all my strength and prayers, good thoughts and hope across the Atlantic!
    Beate

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  4. I wish for Ty's health to come together- no cancer, no pain. I wish for his gains to stay gains leaps and bounds ahead of the past and I wish him to be a 4 year old full of life and energy. I wish for his days to be that of a child. Let his small but strong body heal, heal , heal.

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  5. Stay and keep strong! I have been praying extra all day for Super Ty.

    Prayers from Texas,
    Robert

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  6. Stay strong i know our Lord Jesus Christ is with you.May that beautiful smile of ty never leave us.i know we are all praying and holding you and ty's hand threw this next journey home.











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