Quick Update

Hi Everyone,

Julia is home and feeling good. She was at the hospital twice this week for clinic, blood work, and treatment. Home care comes everyday to administer her anti-fungal meds so its quite busy but being home is priceless. Julia received her last scheduled dose of chemo yesterday and will have her PET/CT on Tuesday. The hope is that she is already in complete remission. Based on how well she's turned around clinically her oncologist believes we should see a complete response.

We had our big video conference with Sloane Kettering in NY on Thursday and it went really well. They explained how the trial works and that so far they have seen a 75-80% success rate. The kids they have seen so far have been very sick with progressive disease and did not respond to chemo. Therefore Dr. Prockup (from NY) thought that since Julia is clinically well her chance of success is even greater. Sloane Kettering currently has 3 donors in their bank they could use for Julia. It was discussed that since Julia is stable and presumably in remission we should explore parental donation. Short term it makes no difference but long term it is preferred if Julia had me or Elio as the donor. Therefore we have registered Julia for trial and Elio and I have signed consent for ourselves to participate. We have an appointment Tuesday at the hospital and they will draw the first set of blood required. They will ship it to NY where they will do the first set of testing (this takes 4 weeks), to see if we are a good match. If one of us is then we will undergo plasmapherisis (similar to dialysis) to retrieve our T cells. They will then be shipped to NY and grown in the lab (this takes another 4 weeks), then infused into Julia. Therefore we are scheduled to go to trial in 8 weeks if everything goes as planned. If Elio or I are not a good match after the 1st set of tests we will go for donor cells in 4 weeks. Should Julia's scan only show a partial response than we will go immediately and use donor cells.

It has been recommended that we take our wish now while Julia is well pending the results of the scan. We do not have medical clearance to do the Disney cruise and must stay on land. We will wait for Tuesday's scan and than make some decisions after that.

I will update all of you on the scan results as soon as possible.

Thanks again for everything.

Nadia