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Joey Update--URGENT EVERYONE READ


Forum: Attachment Parenting

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  #1  
September 17th, 2009, 11:45 AM
esparando para bebé's Avatar Proud Car Seat Technician
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It does not look good. Joey only has about 2% of healthy lung left. He is at risk for another collapse. A transplant is not a viable option. The pulmonologists do not think he will respond to treatment.

Traci is waiting to speak with the cardiologist. He has been in tachycardia all night.

Traci and DJ are fighting to get David and Melanie in to see him. Hospital policy states they're not allowed in.

Traci and DJ also have a very difficult decision ahead of them. They have been given the option of continuing the harsh treatment that doctors don't believe will work or take him home on hospice. No parent should ever have to make this decision.



Please pray for them. Please pray for a miracle for little Joey.

UPDATE
Just got off the phone with Traci. They have opted to continue treatment. They feel that there is still a chance, though slim, so they cannot give up. They cannot take that chance away from him.

UPDATE from his CB!!
Lots of things have happened since I posted. At the time I was at my worst. I had a pulmonologi st telling me that Joey would not survive this. I was being told his lungs would continue to collapse. I was told many things.

I talked to joey's oncologist. She has sent Dr. McClain an email and we are waiting for a response. We have a few things going on.

First, from what I have learned today, this treatment has a 30% success rate. This is for any level of involvement, it is not broken down into any categories. Joey's scans last month show that his lungs are covered in disease. They do feel that success could be lower due to age and level of disease but Joey is not a statistic and not a number. He is a warrior and WILL NOT GIVE UP AND NEITHER WILL WE.

That being said, we discussed his lungs and what we can do to prevent another collapse. They want to do a procedure to basically fuse his lungs to the chest wall. This would prevent them from collapsing. The fact is, after 1 lung collapse the chances of another on a healthy lung are 25%, it is higher with Joey. So they are meeting to decide if we should do this and how it should be done.

We also discussed long term. Long term there will be no sports, no underwater swimming, no risk of injury to his chest.

Another thing we talked about is if this treatment isn't working. We have found that bone marrow transplant will not be an option for Joey, it is too risky and his lungs would not handle it.

WHEN we go home he will go home on a breathing monitor. We will watch closely for any signs of lung collapse or breathing problems.

So yes, prognosis is poor, but Joey is not a statistic, he is a fighter, a warrior, a soldier in the battle against LCH, the battle for his life. IN the words of my husband "Joey is a soldier and a soldier does not do anything without permission from his commanding officer. He does not have permission to do anything but get better."

As for some good news, today his counts are climbing. His WBC is 0.5, HGB 8.9, platelets 102, and ANC is 165!!!

We will not give up, we will not surrender. God has a plan for Joey and Joey has a testament to share.
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Last edited by esparando para bebé; September 18th, 2009 at 10:13 AM.
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  #2  
September 17th, 2009, 11:51 AM
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Oh this just makes me so sad for them...what a terrible turn of events.

Prayers to them all.
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  #3  
September 17th, 2009, 01:10 PM
esparando para bebé's Avatar Proud Car Seat Technician
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Just got off the phone with Traci. They have opted to continue treatment. They feel that there is still a chance, though slim, so they cannot give up. They cannot take that chance away from him.
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  #4  
September 17th, 2009, 02:08 PM
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T&Psss God bless them and their family!! praying and wishing for a miracle!
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  #5  
September 17th, 2009, 05:29 PM
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This breaks my heart, I will pray for Joey.
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  #6  
September 17th, 2009, 06:21 PM
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Oh no! Thinking of them.
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  #7  
September 17th, 2009, 07:51 PM
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I can't believe this is happening to them. They are in my meditations tonight
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  #8  
September 17th, 2009, 07:52 PM
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Prayers for all of them. Where there is life, there is hope.
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  #9  
September 17th, 2009, 10:27 PM
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I'll be thinking of all of them.
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  #10  
September 18th, 2009, 12:50 AM
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No parent should ever have to go through this ever .....my granpa used to say that the biggest curse in mankind is a parent that is forced to witness the end of their child (no matter the age)........all my prayers are with them.
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  #11  
September 18th, 2009, 07:08 AM
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I've no words, that's so awful

Hoping for a miracle for Joey. xxx
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  #12  
September 18th, 2009, 10:15 AM
esparando para bebé's Avatar Proud Car Seat Technician
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update in first post
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Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)
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  #13  
September 20th, 2009, 08:26 PM
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Thank you for keeping us updated.
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  #14  
September 21st, 2009, 09:37 AM
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continuing thoughts and prayers for Joey xx
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  #15  
September 21st, 2009, 12:58 PM
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Thank you so much ladies. Joey came home on Saturday, and goes back to the hospital Monday. We have our ups and our downs right now. His lung has re-inflated and he is stable, they are lowering the chemo dose to make it less toxic and increase his chances of surviving. Statistics say 30% with the treatment he's on, lowering the dose could raise it to 50%. But it depends on his body.
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