If you haven't heard yet, I ended up in the hospital over the weekend. A fever of 100.2 brought me into the clinic on Friday afternoon, and after they accessed my port to draw labs and give me a strong antibiotic, they were ready to let us go home. They just wanted to wait until my ANC (neutrophils) came back, because my other counts looked okay. When they got my ANC, though, they decided I needed to stay. In order to be out and about without a mask, my ANC needs to be over 500, and I was at 110 on Friday. The doctors were a little perplexed at why it was so low, since I hadn't had any new chemo (just my normal nightly and weekly chemo) since the beginning of February.
Their best guess, after getting negative cultures, was that I was trying to fight off some type of virus. Dr. O'Brien, an attending who I hadn't met yet until this weekend (and who I really liked), said that they are seeing lots of patients coming in with RSV or other short-lived viruses. They have fevers and are neutropenic (have low ANCs), but after a few days in the hospital, their counts go up and they can go home. That was me this weekend!
It was a different kind of stay this time, though, because I was feeling pretty good but I wasn't allowed out of my room or in the playroom until Saturday afternoon. My cultures needed to come back negative before they would allow me that freedom. Needless to say, I was not happy. My ANC went up to 240 on Saturday and 470 on Sunday, and the chest x-rays they did on Sunday looked totally clear. We were released on Sunday around 5pm; good thing, because I really needed some sleep!
I was originally scheduled to have an OR procedure this morning at 6:30, but Dr. Absalon decided to hold off on the lumbar puncture with intrathecal Methotrexate since my counts were already low, and it makes my counts go down. They're also holding my oral chemo (Mercaptopurine and Methotrexate) until after they draw my labs next week and see if my counts have recovered. I still had to go to the clinic at 8:30 this morning for my Vincristine, but it doesn't make my counts go down. Let me just say that today's visit was one of my worst.
They left me accessed (the needle that was inserted into my port on Friday afternoon stayed taped to my chest until this morning) so that they wouldn't need to poke me again. Three nurses and Mommy held me down while one nurse inserted the needle on Friday, and I was really mad then. Today, it was even worse.
I've mentioned before that I don't like to be held down, well Daddy had to hold me on his lap, while Mommy held my arms, and the nurse gave me my chemo. Even though it didn't hurt, I told them I wouldn't hold still, and I was already uncooperative for all of the doctors and nurses that tried to listen to my heart and lungs at the beginning of the visit. Needless to say, I screamed quite loudly for a long time during my chemo, as they de-accessed my port, and long after, and I kicked and hit Mommy for the remainder of our visit after Daddy let me go. Mommy and Daddy looked exhausted, and the nurse, doctors, and our care coordinator looked shell-shocked. Dr. Absalon even suggested that Mommy and Daddy wait to start my steroids until after my OR procedure next month. I'm not sure if the steroids were solely to blame, but I know they contributed to my anger.
Hopefully, the remainder of my week goes quickly without incident and my counts go up by next week's lab draw. Though Mommy and Daddy think it's odd, I miss taking my nightly "yummy" chemo.