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Joey Update, T&P please!

Forum: Children with Special Needs


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December 28th, 2009, 10:15 PM
docsmomma's Avatar Platinum Supermommy
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I have sat staring at the computer screen trying to find the words to say this. So if I am jumbled, please understand I am scared. I am asking for prayers, thoughts, anything.

I have called oncology twice today. First time was relatively "minor" in comparison with everything we have gone through.

Joey has mouthsores... blisters in his mouth caused by his chemo (methotrexate). This is causing him pain when he eats, drinks, anything. In addition to the mouthsores, it appears he may also have a fungal infection inside his mouth... which may or may not be traveling down his throat. The scheduled him for tomorrow morning to be seen by the doctor.

Tonight however.. he started coughing again. its a weak cough, his voice is hoarse, and his breathing is "off". not labored necessarily, just not normal. This could be a response to pain (if the blisters are in his throat it would be painful to breath too).

But this is all too familiar, too scary (the breathing that is). my head... with the knowledge of what we have gone through... says relapse. My hearts says its not. my gut just doesn't know what to think.

it was 1 year ago right now we were sitting in a emergency room waiting to see a doctor and find out what was wrong. And today we sit at home and fear that something is wrong (oncology said to monitor him at home).

We did receive some interesting new news today though. They have discovered that LCH is NOT caused by the Langerhans cell, but possibly by a myeloid dendretic cell. This is a huge advancement... if we can discover what cells cause LCH, as well as what cells are involved, then we are closer to a cure for this nasty disease.
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December 29th, 2009, 07:52 AM
sunshine411's Avatar Let's go MAVS!!!!
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my thoughts and prayers are going out to your family and especially Joey. Please keep us updated and of course I will follow his caringbridge page for updates as well.

Im praying its not serious and can be cleared up soon and hes back to his fun mischievous self!
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December 29th, 2009, 08:24 AM
Daisyfields's Avatar Platinum Super Mega Mommy
Join Date: Apr 2007
Location: In the enchanted forest
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I'm sorry to hear about Joey's mouth sores & pain, poor little guy. (((HUGS)))

I'm sure you're freaking about the breathing, who wouldn't? And like you said, it's all too familiar. I'd tell you not to worry, or that wait etc., but that's all the B.S. I hate to hear when my kids are sick or I am in the hospital (most recently). You're a mother, that's your job, to worry. It's sad that most of us feel more like nurses & can't enjoy our children as much as we'd like too. At least that is how I've felt & more recently want to put a stop to all the apts., but I'd be selfish if I did that b/c it would be for me that I would be doing it, not for the best choices for my LO's.

I'm happier to hear that this issue is potentially curable, how wonderful that would be, a cure. That's what every mother/nurse wants to hear, that there is a cure, a way out, a way to make it "all go away" & "better"...

You're always in my T&P's... KUP & hang in there.


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