Hi all – I relieved Nicole this evening after work, she’d been here on the floor with Sally since Tuesday morning. As I was doing my usual laps around the floor with Sally I bumped into one our Leukemia doctors, Dr. Kobos, who is quickly becoming one of our favorites. I haven’t been able to talk to any of our doctors since they declared Sally in remission, and they’re the only ones who actually have the details and knowledge. Dr. Kobos said that Sally responded to the first cycle of chemo “as well as she could of”, there are “no signs of cancer anywhere”, the results are “fantastic”.  With Sally’s great early response, she feels Sally has a good chance of only needing chemo (no marrow transplant) for the two years. She did acknowledge that this could all change as she knows we know the odds, but for now they’re just focusing on the chemo and feel good about it, and so do we. Dr. Kobos has been 2 for 2 predicting Sally’s counts rising and falling, and said we should expect Sally to be here for an additional two weeks, not one. Here’s to hoping she’s finally wrong on a prediction. She was also happy we decided to keep her in instead of chancing taking her home today, she didn’t think it was worth the risk.

One piece of news that was surprising (maybe I heard this before and just got lost in everything) was that next cycle, Sally will have a chemo treatment that is a bit less intense than these first two, but still intense and will receive this fully for the next two years. Older kids typically only get one year of this intense level, then they get a “maintenance year” where the chemo is reduced to a minimum. Because Sally has infant Leukemia, they need to treat it much more aggressively for longer. Luckily, she will still only need two years of treatment. Another thing is that this means Sally won’t grow hair back for the full two years, instead of the expected one year.

The big challenge we’re having with Sally now is that we have to give her TRIPLE the amount of steroids she was receiving before. Last cycle we only had to give her a half of a small tab orally, sometimes two. Now we have to give her four of them 3x daily. As a result, she’s protesting all food and bottles and refuses to eat. She’s on an IV which is keeping her hydrated, but are hoping she gets used to this new regiment and relaxes enough to eat. Other than that, she had a very busy day with lots of different therapies.

All week Thomas has been begging for his friend Carissa to come to his recital today. Apparently she’s the next best thing to Mommy and Daddy being there. Even last night, he refused to go to bed until he heard if she was coming, and wouldn’t talk to Nicole or I about anything else. Well, Carissa and her parents came (see pic) and he apparently had his eyes locked on her the whole time and as happy as could be. Looks like Daddy is out of the gutter now hopefully!

One of the staff remarked earlier, “We get babies up here from time to time, but your Sally, with that face and those cheeks is a celebrity, she’s the Beyonce of this floor.” Please keep Sally in your thoughts and prayers.

Matt