Sat, 08 Nov 2003

84%

Hey everybody. Sorry it's Sat night and I'm just now getting this email done. Fri ended up being a crazier day than we thought and today has been a long one too. So......here we go..... the update from Jade's BMT appt on Fri morning................

The best news was getting the results from his chymerism test back (the percentage of Jared vs Jade) and as of day 56 (Oct 31st) we are at 84% Jared and 16% Jade. That's great news. They wanted the percentage on day 56 to be 80% - 20%, so we're all pleased. (At day 28 Jade was 45 % Jared and 55 % Jade and they wanted 50%- 50%. Since then, his body made up the 5% and added on another 4% for good measure!) The next chymerism test will be on day 84 which is the Fri after Thanksgiving.

Jade continues to taper off the cyclosporine (final immune suppression drug) and will be completely off it by Dec 5th unless complications arise. Other check-up info includes his magnesium still being low and needing infusions nightly but all his other counts were within acceptable/normal range.

Jade still is showing signs of graft vs host disease. The skin rash has spread and has now started attacking his digestive system. We have been fairly concerned and have monitored his food/digestion the past few days. Going into Fri's appt Jade and I thought there was at least a 30% to 40% chance they'd keep him in the hospital. (The frank version is that we've become experts in bowel movements/diarrhea so we can report to the clinic all the specifics they want of color, texture, substance, etc.) Once graft vs host attacks the digestive system too much they have to hospitalize the patient to put them on TPN-NPO (feed them through their line) and allow their digestive system to calm down. After being on no food/liquid for a week or more they slowly introduce food again. The patient gets so many ice chips the first day. A few more ice chips the next day. A couple ounces of liquid the next and so on. If Jade needs to be hospitalized for the graft vs host, it'd be a minimum 2 - 3 week stay so we were thrilled he was able to come home. He needs to call the BMT clinic on Mon and report how this wknd was but should only have to go in for his next Fri appt.

We need to have some graft vs host disease in order to engage the graft vs tumor effect. Basically we want Jared's stem cells to come in and dominate Jade's so they will in turn recognize and erradicate the cancer cells but they can't destroy Jade in the process. It really is a delicate balancing act. So, the long and the short of it is some of this is positive but you wonder how much more lies ahead. Patients can have a mild, moderate or severe case of graft vs host. It attacks skin, digestive system, liver and finally the brain.

We are happy Jade has been home all wknd and has been feeling relatively good. Most people with graft vs host don't feel sick (no fever, body aches, etc.) which is why it's so deceiving and scary. Jade continues to work from home when he feels ok along with some odds and ends around the house and loves playing with Garrett.

I really need to end since this is a lengthy email. Sorry for the confusing medical stuff and for the lovely bowel movement discussion. Feel free to ask to be removed from the list! :) Wouldn't blame you after this one!

We continue to have hope and realize how fortunate we are to have had so many things fall into place for us. Truly miraculous what has transpired to this point. We believe it's a result of your hope, faith, prayers and love. Thank you so much. We are grateful beyond words. Take care and we'll keep you posted.

Much love..............Tanya and co.