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Joey update from me


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  #1  
June 5th, 2010, 11:29 AM
docsmomma's Avatar Platinum Supermommy
Join Date: Apr 2005
Location: Anaheim, CA
Posts: 7,096
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Looking at Joeey today makes it hard to wrap my mind around what we are told and what we know is true.

He plays, laughs, smiles, and roams the halls like nothing is wrong. Outward the onnly sign something is wrong is an occasional cough and his IV pole. Yet they say his prognosis is "Extremely Poor".

I understand why they say this... this is considered his 3rd relapse, each relapse lowers the chances of success. We have exhausted options and if he relapses again then chances are the fight is over. This is not a risk we are willing to take.

When faced with a last ditch chance to save hiss life, we have to take the best option. And that option is a stem cell transplant, also known as a bone marrow transplant.

Knowing what we know today, we have agreed that taking him to transplant is his best option.

I think I knew months afgo that this may be the road we would find ourselvs on, because months ago I brought it up. But aat that time he was sso much sickr and the damage was so much greater. Since then he has healed greatly, making a transplant a viable option.

We talked to the kids, we know David is not a likely match but he wants to be tested. Melanie also says she wants to be tested and "help kick histio butt". My little girl is showing a maturity beyond her few years. This process has made them grow up so much more than they should have to.

We are in the process of getting him accepted to City of Hope.

We know this is a risky option, but we also know not doing this is much riskier. Its a catch 22... if we don't do it and he relapses we will forever blame ourselves. If we do it and he loses we will forever blame ourselves.

For the most part visitor restrictions have been lifted. They don't bat an eye when we have 6 people in the room when theres only supposed to be 2.

We need a donor match for him, whether it be Melanie (25% chance) or someone else. We are working on some donor drives. We need to get some media attention on the need for donors. And the need for research into this horrible disease.

My heart aches knowing what I will be putting him through. He will be sick, hurting, and just plain miserable. He will spend a lot of time completely isolated from his siblings, and more time isolated from the rest of the world. He won't be able to attend church, play at the park, b a normal 2 yr old kid. BUT this will give him many yhears to do just that...

As a side note, we may have no option but to enroll the older kidis in PS for the time Joeey is inpatient. It would be temporary, but it till bothers me to no end.
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  #2  
June 5th, 2010, 11:32 AM
BensMom's Avatar Ephesians 4:29
Join Date: Apr 2005
Location: The Lonestar State
Posts: 50,214
I'm on the bone marrow list thanks to someone in the Dec 2005 PR needing a transplant a while back. Hope you find a match.
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  #3  
June 5th, 2010, 02:20 PM
Super Mommy
Join Date: Aug 2009
Posts: 784
I'm so sorry your going threw this again. I hope he goes into remission for good soon. Best of luck finding a Donner. My husband and I don't meet the requirements to be on the list.
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