Sally doesn’t eat much of anything by mouth, but she LOOOOVES chewing on any meat marinated in Chiavettas, a marinade from Daddy’s hometown of Buffalo.

Be careful what you say around her, she’s a whistle blower.

Hi all – Sally had a very busy week, making three trips to Memorial Sloan Kettering for treatment. On Monday, we brought her in for her gamma globulin infusion. In last week’s update we told you how her antibody level was extremely low so she couldn’t fight off infections like the RSV. All went well, with no issues or side effects.

Infusion

On Thursday, we brought her in for a busy day of PT and treatment. Unfortunately Sally’s central line was clogged, which takes a couple hours to rectify so her chemo got delayed and kept them there til 6pm. We also learned that her hemoglobin was low, so it was determined she’d need to come back on Friday for a blood transfusion.

So we schlepped back in on Friday, hitting a lot of what was likely Super Bowl traffic on the way in, and then realizing when we pulled up that the wheel on our stroller had broken off. One of those mornings. Finally getting to the room, Dr. Kobos came in and asked if we could hold off on the transfusion to see if her numbers could recover on their own. After checking her blood, they dropped a bit more from the day before. Sally has needed a transfusion at this point in her cycle the last two rounds, and in the past once her numbers start dropping, they plummet fast. We decided to go ahead and give the transfusion as we wanted to avoid getting Sally to the point of her whimpering in the middle of the night and having to rush her in with all of the drinkers out there in town partying for the Super Bowl. Next time we’ll discuss holding off to see if her numbers rebound on their own.

Napping during transfusion.

Friday was also filled with great news. The infusion from Monday must have worked, as Sally finally (after 4 weeks!) tested negative for RSV and could come out of isolation! The staff in the clinic was SOOO happy to see Sunshine again, each taking turns holding and snuggling her. This also allowed Nicole and Sally to celebrate Scarlett and GiGi’s last day of chemo! Nicole brought in some treats and put Sally in a tutu just for Scarlett.

Sally’s NP delighted that Sally is out of isolation and happy to be held.

We met Scarlett and her family back when all of this started, we had common friends that put us in touch with each other while we were both admitted at MSK back in June. Coincidentally, they were roommates with Cami and her family, who are from our neighborhood. We’ve been so amazed with this connection, and can’t express how awesome it is that Cami and Scarlett are moving onto another stage with all of this. We’ll still sometimes see each at their monthly appointments, but the days of seeing them often at the clinic are hopefully over.

Celebrating Scarlett’s last chemo day with tutus.

The other great news this week was that Sally’s mood improved daily. It has been absolutely wonderful having her infectious smile in our home again, it really lifts all of our spirits. With feeling better, we also experienced the return of Trouble, who likes to get into everything.

Trouble getting into the diaper changing basket and making a mess!

Trouble going for the iPad…

…”NO SALLY…STOP!!”

Nicole remarked the other day that we’re almost done with the 2nd Maintenance cycle, and we only have 20 months of this same treatment to go. Only 20 months.

Yeah…that’s how we feel about that.

Please continue to keep Mac and his family in your prayers, they’ve had a rough week of treatment and are still admitted. As always, please keep Sally in your thoughts and prayers.

Matt