Hi all – when I left MSK this morning, Sally had eaten a ton overnight and her Neutrophils (virus killing White Blood Cells) were above the .5  minimum number she needs for release. The doctor on duty (not a Leukemia specialist) over the weekend, the resident on call and nurses said we’d probably be able to go home. As I said yesterday, Nicole and I had concerns about Sally’s unexpected rise in blood counts as it didn’t gel with what our Leukemia doctors told us would happen. Still, the prospect of bringing Sally home was enough for us to start thinking about it with rising hopes. After seeing her chug two huge bottles last night, we thought she was on her upswing and had an easy time with the chemo this cycle compared to last. The weekend staff said that blood counts can come back early and are unpredictable, which is what likely happened and good news.

Nicole finally spoke to two of Sally’s main Leukemia doctors today who had a different answer. They said that Sally has yet to actually bottom out as planned, the uptick in numbers were actually a result of her massive steroid dose, and were propping her blood up. Sally will actually bottom out sometime between Thursday and Sunday, this is just a temporary and false hill. Basically, her numbers won’t always drop straight down, it’ll be more like a series of rolling hills ultimately heading down to the bottom.

So what does this mean? First off, only Sally’s Leukemia doctors actually know what is going on with her and we need to speak directly to them if we have concerns. Second, Sally bottoming out could bring more mouth sore pain starting this week among other side effects. And third, once Sally’s numbers hit bottom, it’ll likely be 1-2 more weeks until they recover and she can go home.

Our doctors said we could bring her home until she bottoms out, but like last time would have to bring her in the second she got a fever, stopped eating, was in pain etc. They again expressed that it would probably be better to keep her in and play it safe, but the decision was up to us. Nicole and I  had a brief discussion this evening, we don’t have to decide tonight but are likely going to listen to the doctors and keep her admitted to be safe. Although Sally is eating, she is still not herself, needs morphine from time to time and has very little energy. We vowed last cycle that we would never bring her home until she was fully back to herself. Plus, Nicole said William woke up with a fever last night. He was fine today, but who knows, probably not worth chancing it.

I’m home tonight and was organizing the clean laundry (thanks Aunt Sabina!) when I had to put some clothes in Sally’s room. Going in and knowing she’s not there made me quite sad. We know having her in the hospital is what’s best for her, but its hard not having her smiling face to come home to.

Please keep our Sweet Sally Sunshine in your thoughts and prayers.

Matt