She’s really getting the hang of handing us stuff.

Hi all – Sally’s morning started with a platelet transfusion that I alluded to her needing last night. A couple hours later she got a fever, which was somewhat expected to occur this weekend as her numbers bottom out. She received some Tylenol that kept it at bay most of the day, as well as antibiotics which is protocol with a fever at the hospital. MSK uses Celsius when doing temperatures. 38 degrees, or 100.4 F, is the benchmark to be considered a fever, she had a 38.1. Sally normally runs between 36.5-37.1 (97-98 degrees, why the heck can’t they just use Fahrenheit?) and ran in the high 37s all day, so just short of the 100.4. Nicole wonders if she’ll spike tonight, guess we’ll see. Sally also had an EKG, another standard protocol as her pulse was a bit high with the fever, although everybody attributed that to any pain she is in which the tests came back fine. The doctors (residents) tonight want to raise Sally’s fluid IV up a lot higher due to the fever and a high pulse rate. Problem is, Sally is still drinking plenty and we raised it a bit earlier to be safe. Doubling it (like they want to do) will overload her which we’ve been through before. This will be our first time telling the young doctors no, which Nicole and I were both actually looking forward to, as I think the nurses were as well. I had to leave so missed what was sure to be an interesting (and lively) conversation. At the end of the day, its our decision as parents and Nicole and I were totally on the same page. This is why we love our nurses, they actually see Sally all day so treat the person, not the numbers.

Sally started her shots again today, which are supposed to jump start WBC production. We’re going into that stage in the cycle where we need WBC’s to come back and Sally’s neutrophils to get above that key .5 number.

Other than that, it was a quiet day as usual for the weekend. Sally spent some time on the floor in the lounge practicing reaching, standing and some tummy time. She is not yet crawling as she has no desire to be on her tummy, so just rolls right back over when you try to put her on her belly. We also spent some time with Scarlett and her parents in the playroom. Scarlett was nice enough to let Sally chew on some of her Disney princess toys, and also led us in a couple games. Our roommates got checked out, so are now awaiting our 4th since arriving last Monday.

As a side note, Nicole and I alternate time with Sally, not by choice but so one of us is always with her and the other is at work or with the boys. I write most of the entries as its the easiest way for me to convey my thoughts. I’m an introvert in person, I’m terrible at small talk and can rarely formulate my feelings with spoken words so prefer to sit quietly and write. Nicole is an extravert, she’s better at discussing what she’s thinking. I always steal the line from my college days, Nicole is a social butterfly whereas I’m a social cockroach. Nicole is also at MSK while Sally gets most of her treatment, so writing each night is how I feel involved and a way for me to digest each day’s progress. Nicole does have a user for this blog and I encourage her to use it, but can’t always find the time.  I do my best to try to combine what we’re both feeling into these updates from my viewpoint, which is hard to do as I would never want to convey something that doesn’t gel with how she feels. Whenever I have used the word “I”, its meant to convey that its how I personally feel. When I use “we”, its something we’ve discussed and I know for sure how we both feel. As things quiet down over the coming weeks, I hope Nicole gets the opportunity to write more updates, she’s very good at it and am sure the great people who read this blog would like to hear from her.

Tomorrow I’m going to get in a run and spend some time with the boys before heading into the hospital for the night, Nicole is then going to head home so she can spend some time with the boys as well. We’re hoping to grab some time together while we hand off Sally. We did manage to eat dinner together tonight, the first time in almost two weeks. This is the middle of a long grind, Sally’s fever is strangely a sign that the first beam of light from the end of this cycle’s tunnel is revealing itself.

Please keep Sally in your thoughts and prayers.

Matt