Wednesday, April 20, 2011

STOP... REWIND

Insert the sound of a record player scratching backwards, or a screeching car coming to a halt.  When I posted yesterday morning, we were waiting for Ty's second-to-last radiation treatment.  I mentioned that aside from an episode of headpain the night before, he was doing great.  Fast forward ten minutes... I walked into the treatment room with Ty and the pediatric anesthesiologist proceeded to ask me the usual... if he had any food or drink (of course not) and if he had developed any new symptoms such as coughing or vomiting.  "No, in fact he's doing really great," I said, and at that very moment Ty chose to start throwing up. 

Radiation had to be cancelled yesterday, so today is NOT our last day.  If all goes as planned, we tacked on the extra day and will finish up tomorrow instead.  To say we are disappointed, exhausted and depressed is an understatement.  Not so much because of the extra day, but because of what has gone on in the last 24 hours since the cancellation. 

Even though he got sick, Ty was still in good spirits so we decided to take advantage of our time and go to his scheduled appointment for occupational therapy.  When I tried to give him his oral meds while in the waiting room, Ty threw up again.  It's always a challenge when that happens because it's a tough call whether or not I should repeat the doses.  Ty was a real trooper and he still participated in OT willingly.  He played a few games, cut and pasted shapes... his motor skills are improving dramatically, but even his therapist agreed that he wasn't himself and we cut it short after 1/2 hour. 

On our way home, the vomiting got worse and head pain set in.  The rest of the day was nothing short of torture.  Imagine hearing your child fall from a tree and scream out in pain with a broken arm.  Now, imagine hearing that scream over and over and over again throughout the day.  Imagine your child asking you "what can you do to make my head pain go away?" when the answer is nothing.  I tried to administer pain meds and anti-nausea meds, but he couldn't keep down a single drop.  He started vomiting 3 - 5 times an hour!  Lou and I watched closely and felt very strongly that his infection was rearing it's ugly head again.  I called the hospital, explained the symptoms, and they didn't necessarily agree - no surprise there.  They felt we would be okay staying home and we should see the team after our radiation appointment tomorrow (which is now today).

"F" that!  After hours on end watching him suffer, we jumped in the car and went off to urgent care.  As you know from my previous complaints, there's nothing urgent about urgent care.  We were there from 8PM until 1AM when they finally determined that yes, maybe this is an infection, maybe he should be admitted to the floor.  So frustrating!  We are beyond tired. 

Thanks to IV pain and anti-nausea meds, Ty's RT went off without a hitch this morning.  His neurosurgery team was in this morning to discuss next steps, and we are waiting on the results from several cultures to see what is going on with my poor baby.  He did have a CT scan last night, and there are a few questionable results, so we may be following up with an MRI this afternoon.  Let the "scanticipation" begin!  I will be sure to keep you all posted.  Thank you for all of your love.  XOXO from Ty. 

In the meantime, Gavin is having fun with Aunt Debi and it looks like he found Ty's collection of blue lollipops.  I'm glad he is none the wiser and still having a ball when we are stuck in the hospital.  He is such a character :)  Always happy and goofing around.  I love him so much. 

7 comments:

  1. Gavin, what a tongue! :)~

    Oh, Cindy...I am so sorry to read this update. I can NOT imagine hearing my baby boy (who is 14 mo. old) cry, complain, hurt, etc. and not be able to help. I just can't imagine it! I had a good cry w/ this update, but hopefully in the next few hours the Drs. will give you some good news w/ the questionable results on the CT scan.

    Hang in there and look forward to a wonderful Easter weekend!

    Jan
    Georgia

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  2. We are all thinking of you all the time. Love and more love for you, Ty and your whole family.

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  3. As I'm sitting here trying to think of something uplifting to say, I see the picture next to this comment box of Ty with his grandfather. This is one of my most favourite pictures of Ty, I can't really explain why but it is. The title of that post is patience and I think it's the best thing to remember right now. The radiation will end shortly and the next steps will be drawn out. Ty will get better, I soooooo believe this with all my heart. Know that I am thinking of your family today, even that crazy Gavin. Love and prayers from Canada.

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  4. Cindy,

    I hate it when Ty is in pain or when he has to face anything other than lollies, hotdogs and Spiderman. What an upsetting night.

    Urgent care stinks, I have never understood why they call it urgent care and more so why people believe it.

    I hope that everything is going a little better today for Ty and that the pain and vomiting subsides. I wish I could just take it from him and make it all go away.

    One day left, kinda scary… I know it has to be super scary for you. I am nervous and hopeful about the scan results. I will be checking in all day.

    Have a Happy Easter and know that you are all veeerrrrryyyy loved!

    Mary E. King and the rest of the King family
    GA

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  5. I am so sorry the infection set in. I hope he makes a speedy recovery soon!

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  6. Oh Jesus. I just don't know what to say Cindy.

    Oh heck I bet I could conjure up a few things! Let me start by quoting Miss Teen USA 2007 contestent of South Carolina:

    "I...personally believe, that..."

    I personally believe that Ty's radiation schedule needed a little tweaking in order to zap the X-tumor ever so precisely. These things are being orchestrated my friend. And I'm not sorry if anyone thinks I'm crazy for saying so. I'm sure Nancy could also think of many, many arguments and strong-points to back up the theory ;) Besides, it's true if you believe it.

    Keep up the fight!!!!

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  7. Minus the blue tongue cutie, I am sad to read this post.

    I pray that this is the process of the treatment doing what needs to be done to kill the tumor.

    I also pray that this virus is here for a reason and the antibiotic/virus under controlled variables are also killing this cancer just as the oncolytic viruses are known to do.

    My heart and soul ache for you all!! I cannot not breathe when my kids are in pain and to not be able to make it stop is suffocating.

    Breathe, one breathe at a time, breathe into TY

    You are the lioness and your strength and support will guide TY through this in victory!!

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