Tuesday, May 23, 2006

Filling in the Blanks May 9, 2006

May 9th 2006

We went and talked to the Bone Marrow Transplant team yesterday and they gave us some general information on what the process is for the transplant. We also saw the unit which is made up of 5 rooms which have double doors and Hepa Filters in each. The time frame goes a little like this.

1. THE BMT Team is sending an appeal to the insurance and the insurance has 30 days to reply. The case manager at Principal said she has never seen it take that long. Hopefully they will approve it. Dr. Hayashi seemed to think it should not be an issue at all.

2. Once we get approval they will take samples from Dani and get her typed. This should take no longer than 2 weeks.

3. They will send that information the National Bone Marrow registry and try to find a match. He gave a time frame of 12 weeks. Some children have a harder time than other finding a match.

4. Once a match is found Dani will start the prep work for the Transplant which is 1-2 weeks.

5. Dani receives the transplant and as long as no major complications occur should be out of the hospital in 4-6 weeks.

6. Once her bone marrow is up to a relatively safe level she will be able to be around the family again. Maybe six months?

She will be starting the enzyme replacement therapy hopefully next week.

Ok to the exciting but short notice portion of the email. I found a bone marrow drive that is occurring this Saturday May 13th on Olive Rd at Creve Coeur Fire Station #1 (11720 Olive) . It is free of charge and all they do is a cotton swab in the mouth... NO NEEDLES!!!!. I will put the link to the flyer on here also. The drive is for a little boy that has a blood disorder and his brother found a match and he still has not.

Now the doctors wanted me to make this clear to everyone that wanted to donate. This will go into the National Registry and if you are only willing to donate to Dani then please do not donate. I personally can not imagine finding a perfect match for Dani and calling them and them saying no they just did it to donate to a specific person.


Just to give further incentive to go.... if you just want to donate your bone marrow to the registry there is a $52.00 charge associated with it and this is free. Also it will take six to eight weeks to get the samples from the drive to show up in the Registry so that would be good timing to when we need to find a match. It is a great way to save a life.

Below is the link to the National Bone Marrow Registry donor information so you can read more of the process if you are picked.



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