Feeling lousy.

The number of syringes we used for meds and feedings the other night.

Hi all – We took Sally into Memorial Sloan Kettering today, she had a PT appointment scheduled and we wanted to have her checked out by the team. For the last few days she hasn’t improved, she was up last night coughing and has been very mushy and sleepy.

Instead of a mask, Nicole draped a gown over Sally’s stroller on the way out so she wouldn’t expose the other kids to her RSV.

We decided all five of us would go in as it was our only family day of the weekend. As I mentioned in yesterday’s post, we don’t get to go out much as a family, the hospital is about as exciting as it gets. The boys got spoiled with frozen yogurt and Happy Meals for lunch, an extreme rarity for them. It also turned out to be Sibling Day at MSK, so they got to make their own super hero capes in the playroom (which are now sitting in the car drying as Nicole and I got glitter all over us from them transporting them home).

The boys running their frozen yogurt off in the playground next to MSK, which is the building in the background.

It turns out that Sally’s blood counts are still bottomed out from the chemo, her WBC is .4 and she has no neutrophils to fight off virus. We’re told the RSV virus she has is hampering the neutrophils from forming. At the same time, without neutrophils she can’t fight it off. We just can’t win. So, we putting out a call for everybody to do their neutrophil dance so Sally can finally start feeling better and battle off the virus. We were concerned that something else might be wrong as she’s been miserable, to which our Nurse Practitioner replied “Let’s not forget she has cancer guys.” She was obviously kidding, but she had a point. Sally is just going to be miserable at times over the course of treatment from the chemo and her counts getting knocked down. It is what it is, we just have to be patient and let the chemo effects run their course.  As another parent remarked this week, although it’s what will cure them, “chemo sucks”.

We did get to see Scarlett and her parents today, whom we haven’t seen since before the Holidays. She started her final cycle of treatment today, I gave her head a good rub as she has her hair coming back. Yesterday at the Frankie’s Mission event, we got to hang out with Cami and her parents, who are beginning to adjust to life cancer free after a successful bone marrow transplant. They said they feel as though they’ve been institutionalized, almost like Brooks from the movie Shawshank Redemption. Not having Cami’s counts checked regularly and being able to go out in the world together has been a lot to adjust to after almost a year of treatment and practically living at MSK. GiGi is due to start her last cycle any day now as well too. It’s good to be surrounded by so much good news.

The boys at the Frankie’s Mission event yesterday, Cami is the girl with pink pants and blue shirt, standing next to her sister Olivia.

Sadly another child with Infant Leukemia in our group relapsed this week. I was speaking with one of the staff at the hospital today about it. Although it’s great to have support and be able to ask questions of parents in the same situation, the tradeoff is having to experience families going through the worst case scenarios. We’re OK with that, it’s the reality we all live in and going through this with support is better than doing it alone.

To end on a high note, Nicole has been trying to teach Sally hand gestures she can use to communicate. For the first time Saturday, Sally gave Nicole the gesture for food, and did it again today.Our little girl is beginning to learn how to tell us what she needs.

OK everybody, neutrophil dance, go! Oh, and NYC is getting hit with a snow storm tomorrow night, after the neutrophil dance, do a “Don’t give us any reason to have to go to MSK during the storm Sally!” dance too. Please keep Sally in your thoughts and prayers.

Matt