Hi all – Right about now, Nicole is arriving at Memorial Sloan-Kettering with Sally for what is probably a quick Sunday night visit. Sally has another fever, which adds to a weekend of ups and downs for our little girl.

On Friday night, I came home from work to a tired and clingy Sally, and Nicole telling me that she just got a fever. I called it into MSK and they told us to bring her in. Nicole and I decided to get the boys to bed first while we packed up and took turns holding Sally. Luckily, our nephew Zachary was visiting so he offered to stay while we took her in. While getting the car I ran into the store around the corner where a book signing was being held by one of our new neighborhood friends, attended by all the Bay Ridge Care folks. There was beer, wine, cupcakes…but those were not in our evening unfortunately. I got my book signed, apologized for Nicole and I not being able to hang out, and 5 minutes later ran back out the door to the car.  By the time we got everything done we arrived at the hospital at 9pm. We bumped into another parent with the child on the elevator and had the “Why are you here?” exchange followed with knowing and humorous “Fever? Us too!” answers.

We were lucky to find one of our favorite doctors, who knows Sally well from the beginning, was on duty that night. We also had a nurse who had everything set up for us, so within an hour Sally had an antibiotic (standard with fever) and all of her blood cultures taken.

One of our favorite doctors was on duty, Sally was happy and playful during the first 2 hours of the visit.

We had to wait for the results, which we found out there is literally a person who counts some of Sally’s blood cells by hand for one of the tests. Can you imagine that job? Just counting cells on a slide, one after the other? Anyway, we got the results around 11:30pm that everything was fine and the cultures wouldn’t be ready to tell us if she had a virus for 24-48 hours. As we were packing up, I looked at the results and remarked that her hemoglobin levels had dropped to 8.0. When they drop to 7.0 she requires a transfusion, so Nicole asked to have it done then to be safe.

They moved us to another room with a bed and crib. I took the bed (which had a foot-board so I didn’t fit well) and Nicole climbed into the crib with Sally. What was supposed to not take long  (according to everybody except for me who being tired and grumpy kept saying it’d take at least 4 hours) took 4.5 hours. Luckily we each got some sleep during it, although crappy sleep, and were awoken at 4:35 and told we could go home.

Heading home at almost 5am.

Come home to find both boys on the couch with our niece Vittoria, who woke up and got nervous that we weren’t there.

We got home around 5:30am. I made coffee and got things ready for breakfast for the boys, who came out and slept on the couch in the middle of the night, got up at 6:30. Nicole managed to lay down for a 20 minute cat nap before I fed her some breakfast and coffee heading off to work. Luckily my sister came so she took the boys to soccer and I hung out with Sally, who woke up miserable and with a fever.

Miserable

I wish I could nap for 5 hours like this.

She just laid on me til about 10:30, then I put her down for a nap. And what a nap! Even though I went in there a couple times to give her meds and feed her through the g-tube, she didn’t wake. At 2pm I just left the door open thinking the boys yelling would wake her. Nope. Finally at 3:15, after almost FIVE HOURS of sleeping I woke her up. Her fever was gone, but by 5pm it had returned. I called MSK and they said to give her Tylenol and they’d call me back at 9pm. If she had a fever then, we’d have to bring her back in since any fevers after 24 hours after leaving the hospital require a visit. In the meantime, we all went and laid on the bed and watched some Charlie Brown as a family.

Family movie time

Luckily, Sally didn’t have a fever when the doctor called at 9:30, but were told if it came back at any point we’d have to come in.

Giving Nicole a foot massage, which evened out me getting the bed at the hospital the night before. I fell asleep on the second foot, totally exhausted.

We monitored Sally all day today, which kicked off with some pumpkin pancakes (thanks Kristen) and a quiet breakfast together. We stayed local all day so the car (which we finally had fixed!) would be available should we need to take her in. All afternoon she was a bit off, but no fevers. We used the day to spend some family time together and get things done around the apartment.

We got William a big boy bike today, so proud of him!

Victory kiss after a Bills win.

She had small periods of happiness.

Then at about 7pm, Sally was grumpy and felt warm, a quick temperature check revealed a fever. We called it in and as expected, were told to bring Sally in. She’ll likely just get another antibiotic, some blood cultures, and a urine test. As long as her blood looks ok, they’ll send her home as soon as the results come in. We’re not really sure why Sally keeps getting these fevers.

Nicole just called – Sally has mouth sores from the chemo (which Nicole suspected), still has an ear infection, and her blood counts have dropped. They are rechecking her blood and will likely release her when they come in.

Not sure yet what they’ll do about the antibiotic she’s on from the ear infection as it’s not working. Nicole and I are beginning to wonder if this is going to be the new normal for us during treatment, or if Sally has some kind of virus. Hopefully we’ll get some answers this week, after what has been a long weekend. Please keep Sally in your thoughts and prayers.

Matt