Hi all – Starting to get texts and emails asking how Sally is doing so figured I’d better get an update out. We try to post something daily on Facebook, if you don’t follow you can by clicking here and liking Sally’s page. Sally had an OK week. Over the weekend, she was very clingy and grumpy. While Nicole was at work on Sunday I held her twice continuously for about 2 1/2 hours each, unable to sit with her. Luckily, it was the day of the neighborhood 3rd Avenue Festival outside so took her outside and hung out at the Bay Ridge Cares tent which happened to be right around the corner from our apartment. I hoped Sally’s cheeks would inspire people to stop and talk to them and sign up for the group.

Here are two great newspaper articles published today on the fundraiser with some pictures: Article 1   Article 2 

And another to come I think (a reporter left a voice-mail for me and haven’t had a chance to call back)

At the 3rd Ave Fest posing with Vincent Gentile, our city councilman whose office is around the corner.

Nicole then figured out that Sally was grumpy because she was extra hungry, likely from the steroids. Makes sense, since Mommy and Daddy get grumpy when they’re hungry too. So Nicole fed her more, and her mood improved. She still wasn’t her usual cheery self, but a lot less needy. On Monday Nicole said when they were all starting dinner, Sally literally screamed at her as the boys had food and she didn’t. Our little girl is going to quickly learn how to get what she wants.

Nicole working with Sally on pulling herself up to standing as I walk out the door to work.

On Tuesday night, Nicole headed out to give a friend/client a massage. As I’ve said before, massage for Nicole is like running for me, it’s a stress reliever and a mental break, so was happy she was able to do it. Sally woke up at one point, I got her back to sleep after 15 minutes of yelling at me, but Nicole says she was restless the rest of the night. Probably her message of “don’t you leave me while I’m asleep, just what were you thinking?”

5 different drugs I had to give Sally while Nicole was out, as folks on Facebook pointed out they’re in a cocktail glass and she’ll be having a different kind of cocktail in 20 years.

Today, Sally returned to Memorial Sloan-Kettering for treatment. She received Physical Therapy as well as a couple different forms of chemo. She was good all day, and thankfully took her last dose of steroids for the next couple weeks. Her cheeks have grown as expected, but not as much as the last couple times as we weren’t in the hospital this time with constant IV fluids going into her. Still, it’s a noticeable difference and a reminder of the effect of the steroids.

Big cheeks.

On our way to the hospital.

About to get started…

…but first I’m gonna celebrate the end of steroids by dumping that bucket of stuff on myself.

So steroid hell week is over. There’s one other week in the cycle that will be hell week #2, in which Sally will get three days of very intense chemo. For now, she should remain at one visit a week for treatment assuming things keep going as planned. As I was leaving MSK to head to work, I tried to stop by and see Ariane and her mom, who received a bone marrow transplant, but they were sleeping. I did get to see Sally’s primary in-patient nurses including Adrienne and Lauren. Again, they are like family, it’s sad we don’t get to see them much but obviously also a good thing. They follow Sally on Facebook so are up to speed on how she’s doing.

We’re going to probably buy a second freezer so we can keep more ready-to-cook things to make life a bit easier during the week for Nicole while juggling Sally and our over-energetic boys. Other than that, looks to be a typical quiet weekend ahead, which there’s nothing wrong with. The boys have a 3 day weekend, but I have to head to work on Monday. Hopefully we’ll get some good quality family time together at some point.

Please keep Sally in your thoughts and prayers.

Matt