For those of you who follow our story through this blog, I’m sorry for not posting very much lately. I guess sometimes I just don’t want to acknowledge what’s going on. When we have a really good day, it’s easy to forget about cancer and chemo and fevers and the whole thing. When I sit down and try to blog, it just reminds me of everything and I don’t want to face it.
Last week, we had a rare trip to the oncologist for blood work. Roxy didn’t need a transfusion which is very rare. It was a good and fast visit. Unfortunately, Roxy hadn’t reached “rock bottom” on her counts at that point and we were concerned that she would hit the bottom over the weekend. I’m afraid that happened last night and today. When I gave her a neupogen shot last night, her arm blew up – it looked like she had a golf ball under her skin and today she has a nasty bruise. That leads me to believe that her platelets are really low. She was also tired and really pale today so I’m guessing her red blood cells are low too. I called my “go to” nurse (thanks Jackie) and then eventually the doctor today and everyone agreed that we could wait until our appointment tomorrow. I’m guessing it will be a long day tomorrow with transfusions of both red blood cells and platelets, but who knows.
Back to the title of this blog, we had a very happy change of plans in Roxy’s chemo schedule. On the schedule we were originally given, she was supposed to have a 5 day hospital stay for chemo then a week off then another 5 day stay. This was something we were all dreading. We found out last week that the protocol we were originally given was for radiation half way through chemo instead of at the beginning. Since she had radiation at the beginning, we can move the 5 day stay back, so our next hospital stay will just be an overnight. I think this will be a lot better for everyone’s mental health.
We have also changed our doctor visits around a little bit. I used to take Roxy and my mom would stay with Brie. We started all going together and it makes a huge difference. It minimizes my time away from Brie and gives me my best friend to talk to while we are there. On days with transfusions especially, this has been so nice. I love having my mom and Brie there. I’m so thankful for my mom. She makes everything so much easier for me and keeps my spirits up by coming over every day. I can’t ever thank her enough for giving up everything to be here with us. I love her so much.
Today was kind of a rough day. Roxy was really worn out and tired and she just didn’t look good. I think it was mostly because of her blood counts being so low, but it made me a nervous wreck all day. I kept feeling her head for a fever (which drives her nuts). She felt good most of the day, but later in the evening she felt warm so I took her temp and it was 99.8. That was scary because 100.4 means we are back at the hospital. She said she felt fine – no pain or chills. I wanted to take her temp every 10 minutes, but luckily I have Scott who is much less of a worrier than I am and who also helps me to realize that I’m not helping Roxy by freaking out all the time. So, I let it go and by bed time she didn’t feel warm at all. Hopefully that will let me get some sleep tonight.
Tomorrow is the first day of school and it feel so strange not getting ready for it. I miss my job and my friends at school. Roxy misses school and friends. Brie REALLY misses her school and friends. It’s hard. I think that instead of withdrawing Roxy and home schooling her, Riverside may let me be her home tutor. That would be the perfect situation. I’m really hoping we can make that happen and I am so thankful to work in such a great district.
One last thing – so many of you tell me that you don’t know how you would handle this and how amazing I am. I really appreciate that, but I think you should know that I am not always the happy, positive person you think I am. I had a total meltdown Friday night. I lost it completely and cried so hard and for so long that my eyes were still swollen the next day. Scott was amazing and made me feel much better. I am so lucky to have him and we are a great team.
Sorry that this was so long tonight. I’ll post more often so they will be shorter in the future. Thanks again to everyone for your thoughts and prayers – it means so much to us. We really couldn’t get through all of this without you!
Love,
Stacey

2 comments on “Change of plans

  1. Aunt Marianne

    You are entitled to as many breakdowns as need! I don’t know how you do it! I wish I could be there to help out. You are all in my thoughts and prayers ! God bless you.

  2. Tammy Shaffer

    Stacey you write and post as often as you feel like, when you have time, length or short makes no difference. You have a huge praying support team out here. This journey your whole family is on is to hard to describe I am sure at times. Just please know you all are LOVED so very much. I pray personally for comfort ,healing and answers for ROXY. And STRENGTH and Endurance for You, Scott And your lovely mom Ann. I am sending HUGS right now. And for the record, I do believe moms with swollen eyes, due to tears is the most endearing thing of all. Piss on Mabeline (wink) love you Stace.