Friday, April 30, 2010


Summer has been doing really well all day. She's on steroids to control swelling, and those make her a little cranky, but even so she's been a pretty happy kid considering recent events. She's got her appetite back and has been asking for nuggets, apples, and brownies (thanks Nicole!) among other things. She's slept on me for most of the day, so I'm hoping she'll continue to sleep through the night and let me sleep a bit too.

The doctors are all really happy with how she's progressing. They've been watching her urine output and blood sodium levels as two indicators of a pituitary gland that's not functioning properly. So far, they haven't seen anything wrong, but they're continuing to monitor those things closely. They've also ordered some blood hormone tests to see if she is deficient in any of the many other hormones the pituitary gland is responsible for.

They did a follow-up MRI early this morning to get after-surgery images of her brain, and they also verified that the rest of her spinal column is clear. Of course, that means they had to sedate her again, which makes three times in less than 24 hours. Poor kid!

The doctors haven't confirmed it, and she won't be seen again by the ophthalmologist until next week, but all of the family members who have seen her awake are convinced that she can see and focus on people and things. She's been able to grab things out of our hands and can tell it's me when I walk in the room, which she definitely could not have done yesterday. We're not sure how fuzzy her vision is, but we're pretty darn sure it's better than it was yesterday.

Today we've seen the original neurologists we met with on Wednesday and Thursday morning, the neurosurgery team who operated on her last night, and several of the ICU doctors and nurses. Her regular pediatrician came out to check on her too, which I really appreciated.

They are keeping us in the ICU overnight, but plan to move us out to a normal room in the morning. She's on a few different medications for various things, but she has only been needing Tylenol for pain since this morning, which is a good sign.

Most people say she looks better than they would expect, but she still looks pretty miserable. Her right eye is purple and swollen completely shut. She's missing about 1/3 of her hair (which they saved for us - her first hair cut!) and has about a 12" incision (length estimate provided by Uncle Bill since I'm terrible at guessing dimensions), starting right in front of her ear and curving up behind her hairline. It ends just a bit left of her widow's peak. We're going to count the stitches so she'll have a number to brag about when she gets to elementary school. :)

I totally botched the spelling of the cancer they think it might be in a previous post. It's actually called Craniopharyngioma. Again, they don't have the biopsy results back, so they don't know for sure that this is what it is. That particular type of tumor is usually benign, BUT since it grows in the brain where there isn't much room to spare, they usually will follow up with a second form of treatment (surgery being the first) to keep it from growing again.We'll know more on Wednesday or Thursday after the tumor board meets and gives us an update.

Again, a huge thank you to everyone for your emails, facebook messages, phone calls and visits. We appreciate it so much!


  1. It was so, so amazing seeing you guys today. I am so glad that Summer continues to do well! Hope to see you again soon! Love and hugs to Summer!

  2. Jessica this is so good to hear as I'm sure it's good to see Summer doing so well. I do hope you are taking care of yourself too. I know it's exhausting mentally and physically. I'm looking forward to coming in for a visit in the next few days.

    Love to you, Summer and Jason. Kim

  3. I know you don't know me, your Dad is my boss. Just want you to know that us at work, myself included are praying for Summer, Jason and You. Try to remember to take care of yourself too. I know it's tough but you have to be well to take care of her.
    Take care all!
    Elizabeth Burch

  4. Hi Jessica,

    You don’t know me (I am an elementary school friend of Nicole Van Avery and saw her post on facebook) but I am praying for your family.

    I also wanted to share a web site called CaringBridge designed to, “connect family and friends to share information, love and support during a serious health event, care and recovery.” A few of my friends have used it and one of the things I really like is that the people following your story can get an email alerting them when you post a journal update. It also has space for photos and a guest book. The site is

    Wishing you all the best in a very difficult situation.

    Julie Miner

  5. Jessica - I've linked your blog to the "Warmth for Summer" facebook page ( It will automatically update everyone who is following the page (now up to 61 people as of this morning) whenever you post a new entry.

    My thoughts and prayers are with you, Summer, and Jason.

  6. Jessica,

    Andy and I are definitely keeping your family in our thoughts and prayers. I'm glad to hear that Summer is awake and feeling better...she sounds like a pretty tough cookie! We'll be thinking of you guys!


  7. Glad to hear how well she is progressing! My little man has the same scar... Like a giant question mark on the whole left side of his head. She's going to look like one tough chica when she's older! :)