9/13/08 - Learning how to be Cancer Parents

Today is our one week anniversary of coming home from the hospital. It feels like an eternity, I can't believe it's only been 1 week! We've learned a lot this week, and there is a lot to learn still. We are learning how life is as cancer parents. It will take some adjusting, but I think we'll get there. One of the main things we've noticed is the ups and downs. When Brinley is happy, we are overjoyed. When she's feeling good we feel a little normal, like before all this happened. We also know it could be gone any second, and when she is miserable, it reminds us that she has cancer. She will be laying there with red-rimmed eyes that will barely stay open feeling yucky. Today has been one of those days. She wasn't feeling very good this morning, perked up in the afternoon, then felt sick again in the evening. But she is eating still, yay! She does still have to have to oxycodone for her jaw pain, but at least she is getting some nutrition. She wanted mac & cheese for BREAKFAST again today! How crazy is that??

I think I've decided that is how life is as a cancer parent. We'll have days where we are so overjoyed for a happy moment, we feel our hearts will explode. And then we will have moments watching her go through pain where we will feel like our hearts are shattered into a million peices for what she is going through. That is our reality for the next little while.

My mom was here all week helping and it's a good thing! I don't know how I'll do this by myself, Brinley wants to be held all day! I was so sick yesterday all day that my mom decided to stay and help the rest of the day. I was so grateful, because between throwing up and a massive headache, I wasn't functioning too well! Luckily as my mom was on her way out, my sister-in-law Huenu (David's sister is St. George) swooped in to help for the weekend. So we haven't been left alone yet, my dad left and David's parents came, they left and my mom came, and she left and Huenu came. What a family!!!! Next week will be interesting on our own. Sometimes I feel like a child and want to cry "DON'T LEAVE ME!! I'M NOT READY!" But I know this has to happen eventually. I don't know who could possibly stay with me for 7 months! lol! So I'm gearing up for next week.

We are also feeling quite grateful. We realize it will be hard, but we also realize how much worse it could be. This is something she can beat and grow up to be perfectly healthy and normal. That thought makes it a little easier. I can't wait until I have my happy, healthy Brinley back!! I miss her!

And we are so glad to be here in Utah for all of this. Primary Children's Hospital has been so wonderful. They have had such wonderful doctors and nurses. The nurses have been so good to us, one even came in the room late at night to check vitals on Brin and found me crying by myself (I had thought I was safe with everyone gone, but you are never safe in the hospital!). She came over and sat and talked to me for like 10 minutes, and she was just coming to get Brinley's vitals! I thought that was so sweet of her. We really feel like Brinley is in good hands.