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Hike For A Cure 2009 THIS SUNDAY

Forum: Children with Special Needs


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September 23rd, 2009, 12:55 PM
docsmomma's Avatar Platinum Supermommy
Join Date: Apr 2005
Location: Anaheim, CA
Posts: 7,096
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I am going to paste the email I just sent out for everyone here. You ladies have been so completely supportive and I was wondering if you wanted to help spread the word?

September is Histiocytosis Awareness Month. But even more, Sunday is Hike For A Cure 2009. Team Joey's Warriors has raised $255 to go to research this disease. We would like to raise more. This disease has affected our family greatly.

On January 5, 2009 Joey was diagnosed with Langerhan's Cell Histiocytosis. Though this disease is not cancer, it acts and is treated like cancer. After numerous tests it was discovered that Joey's disease was Multisystem LCH, meaning it was in more than one system of his body. In Joey's case it was in his lungs, liver, solid tumor, probably ear canal, and skin. Immediately our precious son started treatment with chemotherapy and steroids. He was 6 months old. After 12 weeks of induction, he was moved to maintenance. We continued with regular CT scans to watch for signs the disease was back. And on July 13, 2009 the call came through that disease was back. We immediately moved to a different treatment. 5 straight days of a new chemotherapy drug. But after 2 rounds of this, scans showed the disease was still progressing. On August 31, 2009 Joey was admitted to CHOC for high dose agressive treatment with 2 chemo drugs. These drugs would be given over 6 days.

During this hospital trip, Joey got very sick. He tried to pull his hair out so we shaved it, he stopped eating, he lost weight. Then when we saw him starting to bounce back, his lung collapsed. He was rushed to the PICU and had a chest tube placed. Over the next few days the family had many ups and downs. The lung healed and the chest tube was removed less than 48 hours later, but the pulmonologist felt that Joey's prognosis was poor. The oncologists told the family that this treatment carried a 30% success rate.

On September 19, 2009 Joey came home. He will go back for Round 2 on September 28, 2009. Joey deserves to be given a higher rate of success, better treatments, and one day a cure.

Please, help us spread the word. So, you may ask "How Can I Help?" There are MANY ways you can help. LCH needs awareness as much as it needs money to research.

1. Sponsor me in Hike For A Cure 2009 by visiting Hike for a Cure 2009 - General Donation

2. Watch this video YouTube - Joey's Story 2009

3. Forward this email to everyone you know, so that they will know about this disease, Hike For A Cure, and one child's story

4. Visit Histiocytosis Association of America - Histiocytosis Association of America to learn more about Histiocytosis

5. Visit Joey's Caring Bridge page and read his story, then share it with someone else. CaringBridge / fightingwarrior / Welcome

Remember that there is no such thing as false hope or false faith. Faith is about taking that step into the unknown but trusting that something good will be there to help you.
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October 7th, 2009, 12:08 AM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Just seeing this, missed the walk, but will certainly help spread the word.

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