Home from Chicago

Hello,
We made it to Chicago for the Children's Neuroblastoma Conference from Thursday - Sunday. At first I thought we were crazy to be traveling so quickly after Hans had an emergency ER Ambulance Ride. But, all went relatively well! First off, we wound up on the same flight as Dr. Russell and passed the three hours the flight was delayed together. We were actually seated right next to her. It was pretty cool - but I did feel for her, that despite flying alone without her kids, she was flying with mine! We were able to ask her tons of spontaneous questions and get to know her even better. It was a nice perk.

For the most part Hans went with the flow. Kevin and I took turns hanging out with Hans/Elle and going to the talks and, collectively, got to listen to everything. Mostly speakers were presenting their NB research. Our doctor was one of several doctors giving a talk. I do think it's about as early in the treatment process that we would have been ready for something like this. It was a little bit overwhelming in some ways - encouraging that there is so much being done, confusing in that we'll come to a point (like NOW) where we have to make some tough choices regarding Hans' treatment, and just extremely emotional. I guess we were really face to face with the fact that Hans just has a really rotten, really aggressive cancer. He has the most advanced stage of this cancer, and researchers still have a long way to go to find super-effective long term treatments. We met many incredibly strong "angel parents". Their children lost their fight to Neuroblastoma. They come every year for a grief workshop. I can't do justice at describing the compassion, grace, and courage each of them exhibited. I hate that I didn't get to meet each one of their beautiful children.

I felt deflated as one doctor explained to me that US Government research funds for this cancer have dropped into the single digits. I am really struggling with the fact that my government is not doing a sufficient job funding research efforts to fight this (and other) pediatric cancers. I think I'm actually taking it extremely personally. There is a grass roots parent effort called Lunch for Life to get the funds the researchers need very specifically for Neuroblastoma Research. You'll be hearing more from me about this later - on Lunch for Life - just the idea that everyone who knows Hans, or has heard of him through you, gives up their lunch money for a day to support Neuroblastoma Research. I'm looking at his diagnosis anniversary (10/07) to do a fund drive. I just keep mentally going back to that Bumper Sticker that reads something like...."It'll Be a Great Day When (fill in the blank) and the Army Has to Hold a Bake Sale to Buy Bombs." I'm not going to bake anything, but I'll be asking you for your Lunch Money this October to try to save my baby. Thank you for your support. I'll appreciate it if you get the word out to everyone you know. My goal is to have 1,000 people donate their lunch money for a day in Hans' honor. More information will follow in the coming months.

Okay - so it's a long post - but it has been a while. We actually had a little bit of FUN in Chicago. Kevin's cousin Erin lives there. She came and picked Elle up on Saturday and they went to American Girl and other stops downtown. When the conference concluded on Saturday night, we all went out and hit the town. Interestingly enough, Hans was happy as a clam to go out and about in the city. He loved dining in the bar of a crowded little Italian Restaurant. We were waiting for a table and when they called us out to a nice little patio table, he dug in his heels and refused to leave the bar. So, he stayed there and enjoyed two milks and a full meal in the bar. We had fun. Sunday we met up with Erin again and did the Taste of Chicago in Grant Park and also checked out Millennium Park. The weather was beautiful. We were all truly impressed with the City of Chicago. It's clean and pretty and compact and it has a really big lake!

Okay - I'm not usually up this late. We're going in tomorrow for labs, an office visit, and a weigh-in. I'll let you know how that goes. Also, we've got Hans' scans coming up in two weeks. We are beginning to feel the anxiety creep in.

We were in Chicago and weren't able to attend Serenity's services, but I heard they were very beautiful. Leigh Ann threw her a final Tea Party.
Lara