Lots of news

I will start with the good stuff:

Maddie is still in remission! Her cyto-genetic results came back with no evidence of leukemia in her bone marrow. This test was done last Monday, but the highly sensitive results take about a week to come back.

We are very excited about the MileStones Walk in Charlotte this weekend. I picked up the t-shirts yesterday and they look great. We will be having barbecue for all our team members and a cake made by Kathy Allen. We hope the weather is good this weekend so that lots of people come out and support this fabulous cause. We have rented shelter #5 at Freedom Park as a meeting place for our team. If you come out, please stop by and say hello. The shelter is right across from the band shell in the park where the walk will begin and end.

We finished up steroid week on Saturday and it was slightly better than the last time, so maybe she is beginning to tolerate them better. We also had a great weekend! Brandon was here for 4 nights and we had a great time enjoying more family time than usual on this Veterans Day weekend.

Okay now to the less good stuff….

Maddie may have a chronic case of Parvovirus. What is means is that we have to give transfusions of blood products more often than we would like. We got a red blood transfusion Monday because her hemoglobin was dropping very fast, making her very anemic. We then went back today to get IV Immunoglobulin which is a blood product that gives her immune factors that she is not producing in her own blood right now. Our doctor does not think she is contagious, but we are taking precautions anyway and do not plan to let her touch other people at the walk this weekend.

While we were there today for her IVIG transfusion, we checked her blood for a few more things. It turns out that some of her liver function enzymes are elevated, so we had to stop all chemo again today. We are not really sure why this is happening, but it is most likely from all the chemo she is getting.

We are just trying to learn to accept that there is always something abnormal. If we ever get to see normal again we will be thrilled (even if it involves chemo daily). At least while we can’t give chemo, she does not have to fast at night for 3 hours. She is feeling really good since her blood transfusion Monday. And the most important thing is that she is still in remission. We can handle the other stuff.

Thanks to everyone for checking in with us.

Love to everyone,

Liz, Brandon, and Maddie

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