zx12girl
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posted November 13, 2004 07:01 PM
 Edited By: zx12girl on 13 Nov 2004 19:16
I really need some assistance!!!!!!
I am just looking for information and possible leads.....I have always given to charities and never have had a need to search for one..... I always read about this stuff....Did not image it could happen in my family and especially to my little buddy!!!
A little information (History) -
My favorite little niece, Jessica (She is full of fire just like me) was a healthy little girl until this year. She became very ill with a disease called HLH (hemophagocytic lymphohistiocytosis). She started by getting very ill and retaining water. The water started to surround her organs and her organs started to shut down. It almost killed her. Very fortunate that Jessica was flown to the Riley hospital in time to properly diagnose the fatal disease.
My little 6-year-old niece has been though almost a year of Chemotherapy now and the disease has returned. She will now have to have a bone marrow transplant. My Brother and Sister-in-law will have to stay in Indianapolis for three months while Jessica's body learns to accept the new bone marrow (They are in Indy now and the transplant is scheduled for Friday).
The consistent weekly visits back and forth to Indianapolis has made it impossible for my brother to keep his job. The Doctors instructed my brother that Jessica would also have to be in an extremely clean environment when she returns from the 2 to 3 month hospital stay.
We (My whole family) are trying to figure out how we can get the old house that they live in clean and "Jessica" ready for her return. They will need more then the resources that we have.
I am not sure if we will have all of the materials needed to complete the project. We have to put in clean-able/ sterile items and surfaces-
- Ceramic tile floors (kitchen and bath)
- New cabinets
- Hardwood floors or NON-carpet flooring
- Revamp the furnace or replace (no filter on current furnace)
- Clean the heating ducts
- Clean furniture (will have to buy)
- Paint the whole house with Non-chemical / gloss / washable paint.
- New mattresses.
The house has to be very clean because Jessica's immune system will be very weak when she returns. This means that we will be replacing anything that might hold dust, germs, bacteria.
Here is an article written in their local paper -
Article -
http://www.etruth.com/news/story/334955/index.html
Do any of you guys know of an organization or contact
information that may be able to help with the supplies that we need?????
Jessica has a 95 percent chance the procedure will be successful, and 70 percent chance the disease will be completely gone in four to six weeks. With me being in Quality and this being my little buddy.......I see a 5% death rate and a 30% failure rate!!!! 
Thank you for taking the time to read this and keep my niece in your prayers....
If you have information, you can -
* post it here
* e-mail me with any information zx12girl@yahoo.com
* or call me (269) 209-7373
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DaveInDaytona
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posted November 13, 2004 07:25 PM
Edited By: DaveInDaytona on 13 Nov 2004 19:28
It looks like I may be heading down that same path and I spent all day Wednesday of this week talking to doctors about it. I'm an information junkie so I've been hunting for info too.
The requirements you listed for a post transplant living facility seem a bit excessive. Please don't take that wrong, but I've never heard of it being that extreme before.
Good info can be found here http://www.marrow.org/
Here's where my doctors can be found http://www.mdanderson.org/
You can post questions to doctors there and there are suppord boards too. But be careful with the information from other patients and families, their situation may not match yours and need to be taken as advice and not fact.
I'd be happy to help any way I can.
Dave
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zx12girl
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posted November 13, 2004 07:30 PM
Thanks Dave.....
The reason that we are replacing pretty much everything in the house is because they have never had alot of money and the house needs alot of work..... If we had an OK structure to start with then just a good cleaning would work out.
If I had the money, I'd just buy them a new modular home or something else.....in stead of trying to fix this old place up!!!!
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deathpulse
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posted November 13, 2004 08:02 PM
Any way we can help zx12girl? man. This sounds bad!
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zx12girl
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posted November 13, 2004 11:16 PM
If anyone wants to donate money they have a couple accounts set-up "Jessica Hamilton Benefit Account" at any Bank One and I think Key Bank ..... That money is going toward the house!!!
But I really just wanted to find some charity organizations that help people like this!!!! They have to be out there....I just do not have a clue where to look!!!
I contacted Manards (Will have a response in 2 weeks) and I will be contacting Lowes this week.
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Aliveagain
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posted November 14, 2004 03:44 AM
AmeriCares homefront
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slug
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posted November 14, 2004 04:05 AM
don't waste your time with red cross, they like to collect money but they don't like to put out ;P
you can try to see if there is a local baptist children's hospital, they might have a better option than house renovation
good luck. if there's anything else you need just yell.
  
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DaveInDaytona
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posted November 14, 2004 07:13 AM
I didn't understand that was part of the circumstance, that makes more sense. I'd still get a clear understanding of the requirements since a lot has to do more with the people and other live things the patient comes in contact with than the environment. But you are right, the environment still has to be suitable.
Did you talk to anyone in social assistance @ Riley ? They do it for a living and I'm guessing your family members are not alone in this situation.
We had a situation similar in this area and the patient's aunt coordinated a poker run. There was over 8K raised that day, and it was a good time too. I can put you in touch with the person that put that together if you'd like.
Slug, I disagree with the statement about the Red Cross. The Red Cross has dumped tons of time, money, and resources into this area. More than anyone else but FEMA. But I don't want to hijack this tread to get into that.
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VincentHill
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posted November 14, 2004 08:16 AM
WOW Angie, that is as hard as it gets. On Monday I will look through the fires at Science Magazine because they are a little more cutting edge than the Medical Institutions and see what I can find. Hang in there!
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Aliveagain
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posted November 14, 2004 08:38 AM
My bad,Americare is only one day a year due to insurance reasons.I just got back from church and asked those involved,and was told for you to get in touch with the town hall where they live.The town hall has the knowledge of who does charity work for their area.
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zx12girl
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posted November 14, 2004 09:17 AM
quote:
Did you talk to anyone in social assistance @
Riley ? They do it for a living and I'm guessing your
family members are not alone in this situation.
We had a situation similar in this area and the
patient's aunt coordinated a poker run. There was over
8K raised that day, and it was a good time too. I can
put you in touch with the person that put that
together if you'd like.
The folks at Riley have done SO MUCH!!! Man, I can not say enough GOOD things about that place. They put my brother and sister-in-law in the Ronald McDonald House. They pay for the food while they are there, they found somone to fix my brothers car for reliable transportation and they take great care and make Jessica feel like a little princess when she is there......I can not image asking them for any more!!!
It is cold here so a poker run is out of the question but if you can send me her contact information, maybe she can point me in the right direction or have other fund raiser options..... We got the new's in October that the HLH returned and she would be having a bone marrow transplant so it has
been kind of a rush to get everything done and we only have until mid Janurary so what ever I do has to be quick!!! We start remodeling this weekend...
Thanks for the leads!!!!
ZX12Girl
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zx12girl
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posted November 14, 2004 09:40 AM
quote:
AmeriCares homefront
I checked out the website....This is an awesome organization. They are not in my area but I will contact them anyway to see if they know of something like this in Michigan/Nothern Indiana!!!
They assist people that can not financial or physically handle the upkeep of there home....Elderly, physically disabled, the working low income!!! Awesome
After I get my neice taken care of.......Since this kind of situation has hit so close to home, this is where my 2005 donation will go......
Thanks for the information AA!!!
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