The latest update...

We had family in town (both sets of grandparents) for the past 10 days. It was great to have the support from family through this time. Very helpful to keep our spirits up despite the hard news on Friday.

My learnings as we sat with the heaviness of needing to continue chemo this weekend and uncertainty of what's ahead: LIVE LIFE & LOVE. Find something each day to appreciate. Love with all you have.

This weekend Jenson had me walk him to the kitchen where Sydney had some markers out at her little table. Jenson grabbed one and held it up. I said "do you want to draw a picture Jenson?" and he said "Yea". So Sydney got him a piece of paper and I put him in the chair and handed him a marker. He picked it up (with his left hand I might add with proud left handed mom smiling) and proceeded to draw his first picture. I swear Sydney was 2 before she had a desire to color. So cute. His first picture. That's a memory to appreciate and to rally around enjoying the simple things in life. Something to help me focus not so much on the heaviness of his health challenges but on the milestones in life he's continuing to achieve despite the obstacles in front of him.

Sydney and I went to the park and threw the frisbie. She's also learned to be on the big swing by herself and pump her legs so now she can swing completely by herself, a reminder of her continued growing independence and something else to be appreciative for in life.

Appreciate the simple things in life and don't speed past them. Love. Sounds simple but very profound statements when you really try to live them out each day.

So now the news from our oncologist. He said he'd been thinking about the best course of action over the weekend. The good news is things are getting better from when we first started the chemo back in July 2009 like the narrowing expanded, no vomiting, no petechiae so things are definitely heading in a better direction. The challenge is there is very, very limited history of other cases like this so in many ways we're in unchartered territory regarding the best future course of action. He said he's leaning towards staying with the same chemo drugs we've been using as we're seeing progress and as you add additional chemo drugs the risks of long term side effects increase greatly so you really don't want to add them unless things are moving backward. He's going to reach out to several other doctors considered experts with LCH and ask for their recommendations as well and post Jenson's case on a medical site to gather other recos. We'll then make a final decision on how to proceed. We also suspect a serious soy allergy for Jenson (I"ll blog about that sometime in the future).

I've had several people ask what help looks like right now. The biggest help is prayer for Jenson and for us. For healing for him, for wisdom for the doctors and us on his future treatments, and for strength for us to continue to make it through this journey. It feels a bit like we're in a dark valley right now without a map and just trying to figure out the best way out. We know God has a plan and will help us through this time, but do need wisdom and his strength.

Thanks!

Kristin