Thursday, May 17, 2007


We returned from the beach yesterday but only because Kate had chemo treatments today. We'd have stayed the next few days with my family if we could have. There is something so wonderfully relaxing about being there. I was sad to see how profoundly different Kate was in that setting though. Usually Kate is a fish and is dragging us around to swim with her, play games and build sand castles. Last year she swam around for hours wanting to keep playing long after we needed to go. Since her diagnosis we haven't done anything that required any physical activity. She had continued to be happy and smiley which encouraged us. I guess in my mind I was correlating the two. If she was happy then she was feeling well and it turns out not to be exactly right. At the beach she was still happy but not interested in doing anything physical. She just wanted to sit on the blanket, eat snacks (more on that later) and talk about her next nap. Even at the pool she didn't want to play, just sit on the chair and observe from the sidelines. I am glad that she got outside and she seemed to be having a good time but I think I was expecting things to go differently. It's all about expectations...and part of me expects her to still be the way she was before. You are probably thinking, "the child has leukemia, of course she's different!" but when she still has her little smile and the daily interactions are the same I have a hard time predicting how and when things will be different.
Speaking of changes, Kate's hair is thinning out and we aren't sure how much longer it will hang on, so last week we gave her a cute little bob cut so there would be less to fall out. I'd wanted to post some pictures of the haircut but I couldn't find my camera after I took them. When I find it I will post them.
Kate is also round, round, round. I have taken to calling her my little cherub because of her darling moon face. The steroids have really impacted her appearance. The best way to describe her is that she looks like a pregnant woman in her 3rd trimester with a really swollen face (but only in the face and belly. She looks like the woman who looked tiny from behind but when she turns around you say, "I would never have known you were even pregnant!" Kate even rests her hands on top of her belly like I did when I was pregnant). Strange to see my little girl, who has always been petite, morphing before my eyes.
Kate also has a one track food mind and it consumes her thoughts. Apparently after one more week she'll be coming off of the steroids and that desire will be gone as quickly as it came but it is exhausting trying to keep up with a child who is constantly hungry. The frequency and intensity with which she speaks about food makes me know that this drive is not within her power.
I'll post more on the trip later and round 4 of chemo. For now we are off to the hospital.


Potato Girl said...

That thing with the expectations sounds hard. I'm glad you're writing about this, Carolyn. We love you.

Cory said...

Hello, I am Kerri Costley friends and ward members with Andrea and Dan. I just heard about Kate and wanted to empathize as our 3 year-old was diagnosed with T-Cell ALL March 9th. The pregnancy is short lived believe it or not. (SHE IS STILL DARLING BY THE WAY) Izzy is already looking normal again to us and she has been off steroids for about a month. Isn't that food fetish amazing! I've never seen anything so crazy! I'm tearing up as I write to you about this--it is a...there are no words to describe it...unbelievable thing to go through. I feel an amazing bond with you through Leukemia. If you would like to correspond more, please email me at or call (734) 239-1031. You are welcome to visit our blog at as it might just describe the things that will hit you in the next stages (as we are slightly ahead of you) and enjoy a tender video (link seen on the right of the blog).

We feel your pain, your hope, your sense of loss, your desire to gain control again, your joy and relief when times are semi-normal again. We feel it too. Hang on with us. We can do it!!!