Day +425 Just thought I’d post a quick update even though there isn’t much new to report. The good news is that Krystie’s hemoglobin has remained stable over the past couple of weeks as we slowly trying to wean her off the steroids once again. She is down to 12mg/day which is still considered a very high dose but the lowest she has been at in a while. She has been as high as 30mg/day in the past. We hope the 6-MP drug is working and that we can continue to lower her steroid dose a little more each week. The one thing that bothers us is that Krystie has been very sleepy again lately and we don’t get to see her big beautiful blue eyes as much. She goes through phases where she can just sleep all day long which is always worrisome since we don’t know the cause and hope that it is somehow related to the combination of the many medications she still takes (steroids, chemo, anti-seizure, etc.) and not just the continued progression of the disease. On a more enjoyable note, Krystie and I will be doing a radio talk show interview for a fundraiser for the Ronald McDonald House this Thursday. For those of you in Minneapolis, you can tune in to FM107.1. The radio-a-thon will be going on all day and we should be on around 1:15pm. J The other big news in our lives is that our home back in Rancho Mirage, CA finally sold as of today and we are officially homeless! While this may not seem like great news, we have been trying to sell the house for a long time now and it’s nice to have one less thing to worry about. We do plan on moving back to CA, but will most likely go back to Long Beach (where we had previously lived) since we need to be closer to medical facilities that can handle Krystie’s ongoing care. And lastly, we are saddened to announce the passing of Krystie's dear friend, Charles (cb: charleslee), who became another Tay-Sachs angel this past weekend. We met Charles and his family at the NTSAD conference in April 2007 just after he and Krystie were both diagnosed with this terrible disease. Charles was exactly one month younger than Krystie. Another reminder of why we need to cure this disease to honor those that have lost the battle and to save those that are still fighting. That's all for now. As always, thanks for checking in and your continued support.
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