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  #1  
June 4th, 2010, 07:12 PM
esparando para bebé's Avatar Proud Car Seat Technician
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Joey's appetite is back. Traci says he is eating everything in sight.

Joey has been moved to a new room. It is bigger and more private. The hospital has lifted all visitor restrictions for Joey. That just shows how bad they think it is.

Joey will begin HLA-typing by the end of this week and should be going home on Sunday.
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  #2  
June 4th, 2010, 08:02 PM
BensMom's Avatar Ephesians 4:29
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It's so weird to think he was believed to be in remission only days earlier.
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  #3  
June 5th, 2010, 06:31 AM
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I know. It really makes sense that he relapsed...the news wasn't a shock to me, though it was heartbreaking.

Joey developed a rash several weeks ago. Traci suspected it was LCH and the doctors told her that it was just an allergic reaction of sorts. Nothing they did helped it...until he started this new treatment. The rash is now gone.

Over the past month or so Joey has also has several respiratory infections...like he did when first diagnosed. So, the news wasn't surprising but was still very painful.
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  #4  
June 5th, 2010, 02:12 PM
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I don't know really how this work so sorry if it's a stupid question but Why if he's really, really sick would the let him go home to a place that isn't as staralized as the hospital with hospital grade air filters and things like that?
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  #5  
June 5th, 2010, 03:11 PM
docsmomma's Avatar Platinum Supermommy
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When looking at Joey he does not appear sick. However because of how many times he has relapsed, all being on treatment at time of relapse, his disease is considered refractory, meaning it stops responding to therapy.

If he relapses again, there are no further treatments. We've already pulled every US treatment out just to have it fail during maintenance. We are now using a Japan treatment.

His prognosis is "extremely poor" because this disease keeps coming back and the chances of total remission with each relapse gets lower while the chances of another relapse is higher. Joey relapses into his organs.

By allowing him to go home between chemo rounds, it allows him some normalcy and gives him a reason to fight. We take every precaution to keep our home as germ free and sterilized as possible. And when his counts are good we lead a "normal" life. Whereas in the hospital, there are sick kids here. Nurses treat these kids and even the best precautions can not gaurantee against him getting sick. We have more control at home.

Once he goes to transplant things will be very different. He will be in the hospital at least a full month. From there he will be discharged to a special cottage on site which is cleaned by the same staff who clean the hospital, on a daily basis. Every precaution to keep him healthy and away from germs will be taken. He will be in a facility that knows how to handle transplants. We will live onsite for at least 100 days.

The oncology world is an entirely unique world. Many of the children appear healthy on the outside, they play, laugh, and roam around just like a healthy child. The difference is they tug an IV pole with them, some have pain, some have nausea, some lose their hair. The battle wages inside of them.

Many of these kids go home between treatments, because oncologists realize that no matter how sick the child is, if they can recieve the care they need outpatient, then this is best for them. Treatment for these kids can last months to years. By allowing them to go home between treatments you give families reasons to keep fighting, precious memories, and you give the kids the incentive they need to deal with the nurses, take their meds, and do what needs to be done. Without that many kids would give up hope.
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  #6  
June 5th, 2010, 03:53 PM
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Thank-you, I hope I didn't sound rude. I'm glad he's able to be home with you guys, for some reason I though he was being isolated from all germs.
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  #7  
June 5th, 2010, 06:44 PM
in_mommy's Avatar I am just me
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(((HUGS))) I am sorry Traci, I wish there was something that I could do.
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  #8  
June 5th, 2010, 06:45 PM
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Well said, Traci. I was just coming to answer.

Quote:
Originally Posted by in_mommy View Post
(((HUGS))) I am sorry Traci, I wish there was something that I could do.
If you'd like some ways you can help, please PM me. There are many things that can be done/would be helpful.
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  #9  
June 6th, 2010, 12:32 AM
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Quote:
Originally Posted by Miguels mommy View Post
Thank-you, I hope I didn't sound rude. I'm glad he's able to be home with you guys, for some reason I though he was being isolated from all germs.
not rude at all. This is a complex and confusing disease and treatment. At this time he is not being isolated from germs, but we do take steps to avoid them when possible. Once he goes to transplant he will be very isolated, not even allowed to see his siblings, for a long time.
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  #10  
June 6th, 2010, 06:50 AM
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God Bless Joey and the family!
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  #11  
June 6th, 2010, 11:22 PM
Sandra314's Avatar Homeschooling Mom
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Praying for Joey and his family.
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