Tuesday, March 3, 2009

Reviewing the journals

First before I get in to reviewing the journals I would like to thank everyone that sends cards and gifts to Haven. We truly appreciate the smile it brings to her.

This afternoon - after a day at the hospital - Haven received a beautiful bouquet from Mason. When I came we enjoyed it together and she wanted to call Mason. So she ran in to the bathroom with my phone and got to talk to him for a little bit. They discussed the important things like "What did you have for dinner?" --- it was adorable.

Haven talks to Mason (and pretty much everyone) in the bathroom. She hides in there so we can't hear what she's saying. I have to stand by the door incase there is a machine but when the person answers I have to leave.

Over the weekend Kris and I had to sit down and review Haven's journal. Initial journal reports from early 2008 to now. There is one thing I realized over the weekend that we had forgotten about one big thing - that may not seem like a big thing to anyone else but could be a positive sign. Hey, we'll take what we can get right now!

Haven used to be a heavy sweater. It started around age 2 years and 8 months. She would be sitting and doing nothing and be pouring sweat. She would sit on the couch and color in her books and her hair would be dripping with sweat. It was crazy. Well we did chemo for 6 months last year and so far about another 3 months this year. I realized - Haven has not sweat like that since last summer. It just stopped.

Did one of her chemos from last summer stop that portion of ROHHAD? I don't know but it's a good thing.

Also some happy news:

Since starting chemo in January Haven has lost 4 pounds and grown 1.25 inches. In December (as well as all year) she remained a constant 39 1/2 inches tall. She is now 40 3/4 inches tall.

We are very happy to realize all of this. And hope we'll see more positive signs develop in the future. Let's pray this chemo actually works a miracle for us!


  1. HAVEN,

    I like your fruit bouquet from Mason. I noticed Sponge Bob in the picture. I read something about you liking Sponge Bob. I think it is wonderful that Mason and you are friends. I am thinking about you.

    Love and Hugs,

  2. Whoa! Haven, that is a HUGE fruity bouquet. It would make an awesome hat!

    Take care kid,