March 8, 2004

Waiting....

I thought I'd take a quick minute and pass on what limited information we have at this time.

Jade has talked with the BMT clinic and the only real option we have there (with them) is to do a procedure called Donor Lymphocite Infusion (DLI). They would take Jared's stem cells/lymphocites and infuse them directly into Jade again but without the buffer of immune suppression drugs. More than likely this would bring on a severe case of graft vs host and would require hospitalization. There is not a lot of research that shows this has a lot of efficacy. So, it may or may not help and many people die from graft vs host disease itself. Extremely risky with little clinical research to prove benefits.

Jade has talked with our oncologist and they are discussing options with chemo again. We wouldn't do the mega industrial strengths chemo/drugs we did last time: We did that and it didn't work. Our oncologist is researching milder forms of chemo which could possibly slow the growth of the tumors (buy us some time) and allow Jade to have minimal side effects. Jade and our oncologist are hoping to talk again later in the week and see what he (oncologist) has learned.

We are also aware of some other clinical trials going on for DSRCT (desmoplastic small round cell tumors) around the country and we'll discuss some of these options with our oncologist too.

It's been a pretty sobering week and exhausting on many fronts. Emotional and mental work takes a big toll on physical energy. To top it off Garrett had to go to the pediatrician on Sat for an awful rash and the strep culture came back positive on Sun. So, Jade and Garrett are both on anti-biotics and have the same cold/cough/congestion. The fun never ends.

I think it'd be fair to say Jade and I are making plans for:
A) trying more treatments (but exactly what we're not sure yet) and at the same time we're
B) making preparations for the realities which could come.
Neither one of us are real "stick your head in the sand and live in never-never-land" kind of people so we're trying to be prepared on both fronts and then we'll see what God wants for us.

We have received some of the sweetest emails and voice mails from you and we're so grateful. I think last week for me felt like getting hit by a train and having the rug pulled out from underneath you at the same time. Definitely took me a couple days to get my bearings back.

But we're back and at it again. So, this is a rather long email with not much new information. We will keep you posted as we learn more options and get an idea of where we think we want to head. Thanks for your faith, prayers, love and kindness. The hope we receive from you is truly priceless.

Take Care and God Bless!

Love....................Tanya and co.