One of our Primary Nurses, Amanda, who raised flags when Sally’s health started deteriorating. She’s one of Sally’s best advocates. She was also Sally’s first nurse the day she was formally diagnosed.

Transfusion

Hi all – We wanted to provide an update as many are reaching out, which we’re happy to have all of the support. We’re reading all messages, if we don’t reply it’s just because we’re focused on Sally and the boys.

As I mentioned in the last post, Sally has been having digestive issues and while at MSK yesterday her counts literally dropped before everybody’s eyes. One minute she was smiling and looked fine, 30 minutes later the color drained from her face and her lips turned blue. They quickly got her a blood transfusion and although she perked up shortly, has been going through highs and lows in her mood since with pain fits continuing. When I arrived in the afternoon to pick up the car so I could get home to the boys and grab some things for Nicole, the entire team looked like they needed a drink (which am sure many went home and had one). You could see in their faces how much Sally had scared them and how worried they were, and how relieved they were to see her color coming back and even a couple smiles. It’s a reminder of how Sally is more than just a patient to them, they genuinely care for her. Our NP Lauren stuck around til we got a room last night to make sure Sally was OK, and staff continued to check in with us into the late evening.

Our NP, Lauren, stuck around late last night to keep an eye on Sally.

Still, Sally’s symptoms persist. We tried twice to get her in for a cat scan, but being a Friday evening there were no anesthesiologists available. Nicole did her best to get Sally to sleep or sit still, even at one point having Sally in her carrier and rocking back and forth under a blanket. However our little girl knew what was going on and refused to close those beautiful eyes.

Trying to calm Sally for the cat scan.

We were able to get a room around 10pm last night, and walked into a nice surprise. The in-patient staff had re-arranged our room exactly as we like it. Usually when we get admitted, we have to spend the first 10 minutes moving the furniture around to accommodate a crib instead of a bed. It was all set up for us, including a play mat which we usually have to hunt down, literally looking in patient rooms after kids leave. Looks like the floor knew Beyonce was checking back in. We were also relieved to see our two primary night nurses, Kate & Hannah, were both working. They know Sally’s entire history and follow her online so were totally up to speed on her.

Kate is one of our Primary nurses on the in-patient side, she and Hannah have been with Sally since July.

Last night was thankfully uneventful. This morning, we learned Sally’s platelets are still bottomed out, so she is going to keep receiving more of those until they rebound. She also had a long 10 minute pain fit, which Nicole quickly grabbed the day shift so they could see it. We’ve learned that staff have to see it to truly understand what we’re talking about, which is no knock on them. Sally is a very unique girl, she doesn’t cry in pain unless it’s REALLY bad, when in pain she typically gets very quiet. The fits also come on very suddenly, she smiles before and after. She is currently receiving morphine for the pain.

With the day shift coming on and rounds going on, we’re in a bit of a holding pattern. We’re hoping to get Sally in for a scan today. From past experience, we know we have to make sure the medical staff on the floor this week (not Sally’s usual doctors) are speaking directly with OUR Leukemia team. Luckily Dr. Tom, who is on call for our team, saw everything with Sally first hand yesterday so know he will make the best decisions knowing the whole story. We’re likely going to be admitted until we can get her platelets back to normal levels, at least another day.

We’ll post updates to Facebook when we can, and post summaries here for those who don’t have Facebook when we can. I’m going to take the boys into the city this afternoon so we can hopefully have some family time and get Nicole out for some fresh air. As of now we don’t need anything other than prayers and positive thoughts that we can figure out what is going on. We also want to remind people to donate blood and platelets. Even if Sally doesn’t use, other kids here will.

As Nicole said this morning, we’ve had peaks and valleys the last few weeks, yesterday was very much a spike downward after this up and down road. Hopefully we get to the bottom of what’s causing it. Thank you for your support, please keep Sally in your thoughts and prayers.

Matt