Not exactly the same as watching the Super Bowl in our living room.

Hi all – I just realized that an error occurred in our last blog update, and a draft was published instead of the correct final (longer and edited) version intended. The challenges of trying to send an update on a phone in a rush 🙂

We were admitted this afternoon and funny enough are sharing the room with a family we had met on Facebook over the last few weeks. Brynlee is also being treated for Leukemia at MSK, and is in the process of getting ready to undergo a transplant next month.

We got to the room which happens to be room 911, the room we were in the day Sally was diagnosed and started this journey back in July. We updated the nurse and then Nicole ran home to take a shower (we had both been covered in vomit) and gather things to spend the night. I stayed with Sally, who at this point had STILL not peed since the day before. She was also very swollen, especially around her lower belly and private area.

The team decided to give Sally a high dose of IV fluids and then give her Lasix, a drug that encourages urination. While undergoing the fluid portion, we agreed that we wouldn’t try to feed her. Unfortunately, it made no difference, Sally threw up on me again, even though she hadn’t had anything through her feeding tube since the last occurrence. That was also my second and final shirt, so had to remain in it until I got home. Sally became increasingly tired and wouldn’t sleep on me so I finally put her in the crib. She didn’t want to be in there alone, so I did what I’d never done before, I somehow managed to get my entire 6ft 7in frame in the crib with her. Of course once I got in there, I realized her pants were wet. Sure enough, 24 HOURS LATER, Sally peed! After a quick diaper change I crawled back in and she finally fell asleep.

I was elated that I was able to get her to fall asleep.

Nicole arrived and brought the boys, who our very generous neighbors The Tenwinkels watched them for a couple hours after my sister dropped them off while all of this was going on. They said good night to their sister, who was out cold, and Nicole and I tagged hands and swapped places. She’ll be there tonight and tomorrow while I head to work.

Hopefully now that Sally is urinating, she can lose some of the fluid that’s building up causing the swelling. In order to leave, we’ll need her to be able to hold food down and urinate without the Lasix. Right now, the drugs are not helping with the nausea. We also need to keep an eye on the issue with her liver enzyme levels, the doctor appeared concerned about them when he told us. Hopefully that rectifies itself along with everything else. Nicole and I think she has some kind of virus, but nothing has been confirmed, we’ll have to see what the Leukemia Team says tomorrow. Hopefully Nicole is able to have a smooth night with her.

Thank you so much for all the well wishes both here and on Facebook, we’ll continue to keep you updated on our little girl. Please keep Sally in your thoughts and prayers.

Matt