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.


  1. I know what you are talking about. We've had all those same experiences, even being put on the 'overflow', walking the same halls again for the hundredth time. These things are 'normal' for cancer patients. You've got my love and prayers and tears for Spencer. It seems like forever when you are going through it but before you know it you WILL be looking back on all this. Trust me on this.

  2. Oh, yes, I called you mom : ) I would be lucky to have a mom like you; Spence and Belle and Gavin are so blessed to have a mom like you. I know you are so tired and worn down and I wish there was a way we could physically rally and give you some of our energy. Through prayer, I hope you are given some. Keep fighting Holly, there WILL be a day when, instead of being in the thick of it, you will look back at this and say "remember when..." xoxo

  3. I can only imagine Holly and my heart aches for you deeper than I have ever felt. I cry with you and pray with you all the time. I wish there was something that I could do for you but right now I will just keep praying my little heart out. Remember that you can always call me for anything! Love you and good luck with spencer!

  4. Hello Holly, it's me, Kate again. With all that's going on with your life you probably don't remember me but I wrote once before and mentioned that I collect inspirational quotes to get me through my down days.

    I almost didn't read your blog today because I had a bad day dealing with my own shit ya know. I don't know why but I just felt like I should and I felt so sad for you and especially for your son. So I got on my favorite website to find just the right quote to maybe give you a lift (I get on this site all the time) and this add pops up first that says,"we can give you a quote on any kind of loan you need" and I started to laugh because it was just so bizzare, like who was the idiot that put an ad for loan quotes on an inspirations site. But after I stopped laughing I felt better and I thought that is what you maybe need to do more often. and then I remembered one of my favorite lines from a movie. It was a long time ago but the movie was Steal Magnolias. Dolly Parton says "laughter thru tears is my favorite emotion"

    I hope I don't sound too weird I just thought maybe you need a laugh break. Your son seems to understand that because it was so funny that he took those radiation stickers and put them all over his face after. I don't think an adult with cancer would do that, kids are really good at finding things to laugh about at the weidest times.

    Anyway,God bless you and your family,