UPDATE ON MADDIE

Maddie completed her second round of high dose methotrexate during the consolidation portion of her protocol this week. We were released from the hospital on Valentine’s Day. Thanks so much for all of the sweet cards and gifts for Maddie. We are at home now, and we will go in Monday to see if her counts are good enough for us to start the next two chemo drugs, VP16 and Cytoxan. Based on where her counts were yesterday, it is doubtful that she will have made enough platelets for us to start. It might be nice for her to get a little break as she has some pretty bad mouth sores at the moment. She seems to be really feeling the effects of this latest chemo. She is nauseous around the clock and has stopped eating solid foods due to the mouth sores. She is sleeping a ton, and it is clear that she does not feel well when she is awake. Sometimes it is hard for us to tell that the chemo even affects her except for the changes to her blood counts, but this is not one of those times.

We have come a long way and it is nice to be able to see the end of the really tough chemo. We just have two more planned weeks of hospitalization for chemo left. Of course, any time her counts are low we are at risk of unplanned hospitalizations. After we complete the next month, which is arguably the toughest of all the chemo, we have six more months of weekly chemo. Those six months will be mainly in and out of the clinic here in Charlotte, but there will even be times where her counts are good enough that we may get to visit our home in Jacksonville. It seems like forever since I (Liz) have been home. We packed in 2 hours to leave our home for a year. At the time, it seemed like an easy choice because we knew the care would be better in Charlotte. We have been very happy with her care here, but it was impossible back then to see just how hard it would be to live separately, with Brandon having to spend so much time in the car. My mom, Bea, and Lance have been incredibly hospitable. They feed us better than we ever would have eaten at home and the accommodations are fancier than our home. They are also extremely helpful with Maddie, and we are incredibly thankful. That does not mean I do not long for a night in my own bed with us in our home acting like a regular family. It is almost impossible to imagine what a “normal” life will be for us in the future, but whatever it is we look forward to it. Thanks again to everyone who sent things for Maddie for Valentines Day. We really appreciate all of the support. Please keep her in your prayers as she is feeling pretty low right now.