Another roller coaster day, but she's back to %100 dosage

On my last post I mentioned that Emily had developed some acne looking marks on her face. Over the past few days they started to get worse. Last night they spread from her face to her ears and we really started to get concerned. It looked much more like a medication allergy than acne. And finding something like that late at night, Tracy and I let our thoughts get ahead of ourselves.....would they have to switch drugs, stop treatment etc etc etc. And to make things worse we started looking up side effects on the web for 6MP, the main drug in her treatment. We had made a doctors appointment to have her seen for this anyway today so we were seen this afternoon. What they figured out was she is probably having a normal side effect of 6MP and not an allergic reaction. It also could be a common reaction they see from having 6MP and Septra concurrently. These are all common things they see often and none of the medical staff seemed to be too worried. They also were totally understanding of our concerns and they took the opportunity to educate us more on 6MP and her treatment. I was really happy I went to the appointment and got to ask my questions, I can sleep better tonight.

Emily's lab results today were great, she's back to %100 dosage.

While we were at the hospital we got a chance to see the new 1 North Oncology and Stem Cell Unit that just opened yesterday. Each room is private, with 2 day beds for parents. Each room also has a Nintendo Wii to keep the kids busy while they have to be in the hospital. It's a very nice patient unit, but I hope we never get to experience it. It was built be the Bass Family Foundation. They explained to me that they will be located in the new center until the entire hosptial is rebuilt, several years from now. There is a big battle going on between Stanford Medical Center, the City of Palo Alto, and Stanford Shopping Center. The hospital wants to add 550 patient beds (between Packard and Stanford Hospitals) and the Shopping Center wants to build a new flag ship store location and a large hotel. Palo Alto knows the area can't handle all the cars, so there is the dilema. Do they allow more shopping or more space to save lives....gee I think I know which they should choose, but I think we all know the mighty dollar will dictate what happens. I got all this information because I happened to have met the Director of Care Services for the Cancer ward today. When she told me about this battle with the City and Shopping Center. She could tell that I really care about this and invited me to show up at the next planning commision meeting and explain to the public what an impact the hospital has had on our lives, telling me that hearing it from a parent of a patient holds a lot more weight. She gave me her card and also mentioned she sometimes takes parents traveling with her on her road shows for funding. I have her card and plan to follow up, I have been looking for an opportunity to make a bigger impact. We will see how it plays out.