NEW UPDATE ON MADDIE

Please continue to pray!

This families strength is amazing but they still need our prayers!

I just wanted to let y'all know about a change in Maddie's protocol. We had talked about starting maintenance soon and said that it would be much easier than the phase we are in now. We still plan to start maintenance after her next week of chemo, but the maintenance phase is going to be beefed up a little bit with two added weeks of really tough chemo. This means that we will have to continue limiting her exposure to others for about 5 weeks at a time twice during the next six months. The other change is that her chemo regimen will now last two years rather than one. She will have chemo every week until 2 years after her diagnosis which was October 30, 2007. This change came about not becuase of any changes in Maddie's condition, but rather out of the US Children's Oncology Group decision to increase the length and the strength of the infant leukemia protocol. While the added year certainly makes our separate living situation a little more difficult, it is reassuring to both Brandon and I, as we have had lots of anxiety about the short length of her protocol and the fact that it was so front heavy. The most recent studies which led to the widespread use of the protocol we were on show a 5 year survival rate for kids with the MLL gene rearrangement diagnosed between age 3 mos and 1 year as being only slightly greater than 50%. Our doctors have always assured us that Maddie's chances are better than that because she was towards the high end of the age range. Nonetheless, those stats have never been particularly encouraging. We are hoping the addition of more time and chemo to the protocol increases those stats. Brandon and I feel better about the increased strength of the chemo during the next 6 months, and we think the extra year is a good thing too. It will be a long 20 months, but we would do anything to get our baby healthy. On a lighter note, Maddie feels great right now. Her white count is recovering and we are just hoping her platelets will start climbing too so we can get a start on the High Dose Ara-C. We have been at home all week and this is the first time (knock on wood) that she has ever stayed at home this long with low counts without getting a fever. We go back in Monday to check her counts again to see if we can discontinue her daily injections of Neupogen and start chemo 2 days later. Also, I finally uploaded some pictures (since Christmas) to snapfish and you can see them by going to: http://www1.snapfish.com/share/p=81261204820536783/l=359734294/g=82840857/otsc=SYE/otsi=SALB I am sorry not to upload them all here but it just takes so darn long. Take care, Liz