Yesterday was Hip! Hip! Hooray! chemo day (dripping with sarcasm). First off, Brinley has NOT caught the virus yet, so that is good. Upon arriving at clinic, one of the nurses came in and said she had already booked us for tomorrow. I looked at her a bit bewildered as to what she was talking about, until I realized she was assuming Brinley would be in the very next day for a fever. Ha ha, very funny! We are hoping to NOT be visiting today with a fever...

Her counts were great, and aside from having a nurse that was painfully slow when we had to leave at a certain time (Taylor had to miss a soccer training because we didn't get out on time), things went fine. We talked about her pain again, and about the neuropathy and it's awful side effect of aggression. We are going to give it one more month, and I am to log when her pain appears, and if it doesn't seem to be making an obvious difference in her pain, we are going to stop it. The benefit does not outweigh the side effects. So we shall see. They can't seem to pinpoint what the pain is coming from, and although it was less often this month, it still showed up for a week or so, and again when the steroids started. One of the oncologists pointed out to me that our "main" goal is to achieve and keep remission from the cancer, and that goal is being achieved. Sometimes that comes with consequences to her body, which we will try to handle as best we can, but at least the main goal is being achieved, she is in remission still. Even if she has long term effects, which we all know is a very likely possibility, it is the price for keeping the cancer away, and I understand that, even though it makes me sad. I look at her and hold her and she feels so fragile to me. She isn't the sturdy girl she was before all of this, she folds up in my arms like a little rag doll, but she is here and I am grateful for that.

We started the steroids early this month so we can go to New Mexico without worrying about steroids, so she has been on them 4 days already. She has been feeling sick. She got her IV chemo and they started the dose of pentamidine. She has had that medicine several times, but for some reason this time she reacted to it. It goes in over an hour, and towards the end she fell asleep because it makes her feel sick. When she woke up she started freaking out, itching her head like a madman. One of the nurses walked by and said "uh, she looks really red", and within 30 seconds a doctor and 2 nurses were sticking oxygen monitors and listening to her heart and breathing. They got some benadryl in her right away, and it worked, she started looking better and was just fine. We had to stay an extra 30 minutes for them to monitor her. Weird, weird, weird.

When we got home, 5 hours later, it was beautiful outside. I decided to take her for a walk. So I started walking with the stroller, and soon after I started I had forgotten about the weather and was feeling heavy-hearted. I was thinking about spending the entire day at clinic and how hard this is on Brinley, and how much she goes through. My thoughts were interrupted with Brinley's little voice, "This is the best day ever". Come again? You are sick from the steroids, you had an allergic reaction, rode home sitting and staring out the window, not uttering a word, with the saddest look on your face, and now you are saying this is the best day ever? I said "why?", and she said "because I love to go on a walk." Talk about appreciating the good things when you are in the middle of a storm. Brinley taught me a lesson yesterday. There is a way to feel complete joy during your trials if you will just turn your mind off and enjoy the moment. Forget about the big picture and find little things to bring joy. Thank you Brinley.

After that, Jade had a friend over, and Brinley followed them around saying "I just want you guys to cuddle me." Oh, it was so heartbreaking! Of course, being children, they just wanted the annoying little sister to leave them alone. They were patient with her though, and I was grateful to them. I know it was hard.

Now she is asking when she will feel better. The worst will come probably later today and tomorrow, when the IV chemo is at it's worst for her. And then we will have one more month down, and the countdown continues.

Brinley and Jade had a funny, cute conversation the other day. I wish I could edit in their little voices and the way they said the things, but try to imagine them as best you can.

Jade: Why can't I give her some presents because she has cancer and is sick a lot?

Brinley: (ears perk up hearing the word cancer) Who me?

Jade: Yes.

Brinley: (smiles completely cheezy, almost the way she pretends, and as dramatic as possible) Thank you. Here, have some hand sanitizer.

Bahahahaha! Hand Sanitizer?? Spoken from a true cancer kid!

Now I'll go give a rock-a-bye and see if I can survive these next couple days.


Anonymous said...

Yes, thank you Brinley for the many personal favorite so far being..."if it doesn't hurt right"♥♥♥♥ I am always amazed by your whole family's endurance through this trial xoxoxox prayers and hugs xoxoxo
p.s. ( I called today before I read this) but the message remains the you♥

Sole said...

Kristin, that was the best post, it made me laugh so hard! Thanks for always sharing. I don't always comment but I do always read and keep you guys in my prayers, we all do in the Arrendale household. I hope you guys can make it to New Mexico next week, I wish we could go too, but I'm hoping that we see you passing through. If not, we completely understand. Lotsa luvs,

Susi said...

Great post Kristen.... I am up way to late but thanks for sharing your sincerity and heart during all of this. I am really glad I didn't go to sleep cuz your post just reminded me to enjoy the little things. Hugs to you guys!

Adria said...

What a sweetie she is. I am sorry she is suffering so much and I'm grateful for your post about Brinley's "best day ever". I will try to be more present in my own life and look for small blessings.

Anonymous said...

I hope Brinley continues to be able to avoid the virus going around...and that she can focus, along with the rest of your family on having a wonderful summer!:)