Thursday, April 22, 2010
I am tired. I think we are all just so tired. It is amazing what anxiety can do to a body. Wrinkles, gray hair, fatigue. I had an interesting experience today. I was urging a friend whose family is sick and whose daughter, too, is neutropenic, to check her daughters temp. often. She teased me and called me "mom" and then I had this "thought" to check Spencer's temp. I did and it was 100.4. It is supposed to be under 100.3 and anything over that and up to 101 i am supposed to watch for a couple of hours, if it doesn't drop then we are supposed to get him admitted. Most of us have white blood cells that fight infection. We do not always get fevers because these lovely neutrophils come to the rescue and fight the invaders before they do any damage. Well, since Spencer has very little neutrophils, there is no rescuing and the fevers start to fight off these foreigners. His temperature teetered between 100.2 and 100.8 for the next couple of hours so I decided to call the Oncologist and she gave us the go ahead to come in. Thank you Ally for inspiring me to check on his temperature. When we got to the hospital so many other things hit me. I went to admitting and we got directed to the Emergency Department. The last time we were in the Emergency Department was on February 1st. The day of his first CT scan, the first day I heard the word Rhabdomyosarcoma, the first day of a very long year. The same nurse practitioner that told us he has a tumor, helped us tonight. It was all so weird. So many weird feelings coming back. He has had a pretty significant drop in weight loss and I really hoping that we can get that back up with his tube feedings. It is just really tiring that there are no time outs or redo's. There is no time for naps or revitalization. There is one mode, and no off switch. So if being back in the ER was not weird enough our regular ICS unit was full and we got put onto an overflow unit on the surgical unit. This was the first unit we ever stayed in here at Primary. It has just been a weird night. His fevers are low but they are there. I have had so many flashbacks to the "old days" as we have spent our first night on this overflow unit (I am continuing with this blog this morning from last night). I remember when he first had his biopsy done and was supposed to only be there overnight and ended up staying three nights and I was so tired. Three nights was such a long time for us to be there. Ha! I now love our three night stays! It is funny how perspectives change! Three days compared to five or ten days are a piece of cake. I feel vulnerable and out of place on this unit. We have become so comfortable on our ICS unit but everyone here is so nice and I was just informed that we will be moved upstairs back to our "safe haven". Because he is severely neutropenic from his last chemo treatment, ANC is 0.1 (100, 1.5 (1500) is the high of netropenia, he cannot leave until he has been without fever and infection for 24-48 hours. I am sorry about not having pictures again. I left my camera cords at home and have no way to upload them at this time. Nate is going to spend the weekend here with him. As I was walking out of the cafeteria and as I go onto the elevators I wonder how many times I have walked down these halls? There seem to be so many times in such a short period of time and we have so much more time ahead of us. We have completed about 1/5th of our treatments. I am trying so hard to look one treatment session at a time but it is so tempting to look far into the future when all of this will be done. I need to take a deep breath and stick with the plan! Last night was just so weird with all of the not so long ago memories of the "beginning". I thought Nostalgia was supposed to be happy.
Posted by Gooches at 9:52 PM