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Joey Update--URGENT EVERYONE READ


Forum: Children with Special Needs

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  #1  
September 17th, 2009, 11:48 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 10:11 AM.
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  #2  
September 17th, 2009, 11:58 AM
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Sending all my positive energy to the family
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  #3  
September 17th, 2009, 12:18 PM
AlexKatieAiden Mommy's Avatar Linda
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Keeping the family and Joey in my thoughts and prayers.
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  #4  
September 17th, 2009, 12:21 PM
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This is just heartbreaking.

I don't know what to say. My prayers are w/ Joey & the family.

I pray for them to have the strength to get through this.
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  #5  
September 17th, 2009, 01:14 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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  #6  
September 17th, 2009, 01:45 PM
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Oh gosh, my heart is breaking all over again... I am praying so hard for a miracle, and have sent a text message to Hope as well, I know she will be praying for him.
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  #7  
September 17th, 2009, 02:01 PM
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I am speechless.. many thoughts and prayers go out to them.
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  #8  
September 17th, 2009, 03:35 PM
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Joey is constantly in my thoughts!
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  #9  
September 18th, 2009, 09:18 AM
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Praying for them still.
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  #10  
September 18th, 2009, 10:12 AM
esparando para bebé's Avatar Proud Car Seat Technician
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update in first post
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  #11  
September 18th, 2009, 01:17 PM
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Pulling for you Joey!
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  #12  
September 18th, 2009, 03:45 PM
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I'm praying so much for Joey. He can beat this!
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  #13  
September 19th, 2009, 08:58 AM
~~~Sara~~~'s Avatar Platinum Supermommy
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Just checking in and good to see the update, Joey has wonderful parents!
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  #14  
September 19th, 2009, 09:58 AM
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JOEY IS COMING HOME TOMORROW, STABLE!

He will be home for a week, lung surgery is postponed, maybe even indefinately. Home oxygen and IV meds. But home!

I know that he is ordered to have the O2 at 5 liters in an emergency, to get him to the hospital, in case of another lung collapse.
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  #15  
September 19th, 2009, 01:17 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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Yay for Joey coming HOME!!!!
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  #16  
September 19th, 2009, 07:13 PM
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I am so happy you get to take him home!
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  #17  
September 20th, 2009, 09:36 AM
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We came home yesterday, without IV meds since his white count was so amazing!
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  #18  
September 20th, 2009, 11:18 AM
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That's good news!
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  #19  
September 20th, 2009, 03:35 PM
AlexKatieAiden Mommy's Avatar Linda
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That is so great. I am so happy for you guys.
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  #20  
September 21st, 2009, 10:54 AM
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I'm so happy Joey was able to come home and is doing well!
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