Elan's Blog: Seattle Children's Hospital and photos!

Hi there! I don't know why I find it so emotionally challenging to get around to posting... all is great!

So here is the update from the past 3 weeks....The brain board at Seattle's Children's Hospital discussed Elan's case at their brain board! This is really amazing such they are one of the best in the world for brain tumors. Just look at their site a bit and you will see why we are thrilled. How great to get them to give us their opinion! There were multiple pediatric neuro-oncologists, several pediatric neurosurgeons as well as several others all in the room discussing him so we felt we were given expert advice (once again!). To give you a since of what this means, there is only one pediatric neuro-oncologist in all of Charlotte for all hospitals.

So the decision we made after talking with them is to just keep doing what we are doing. They came back and said either do the currently recommended protocol chemo (mega high dose and 3 rounds of stem cell rescue) or really nothing. The reason is that anything in between won't do much for the cancer and his quality of life will defiantly be compromised without much benefit. As always they do suggest the protocol but totally understand where we are coming from as well.

Erik and I talked with the neuro-oncologist on the phone after their meeting for over an hour. She is our age with a kiddo in pre-school so feel good that she understands all angles of our situation. She really was positive and super honest with us. She said they are having amazing success with AT/RT at Seattle Children's with around 2 to 3 kids a year however around 1/2 don't make it through the protocol. Odds that are not so great in our option.

We knew at the very beginning of this Elan wouldn't have been one to have thrived, especially at the condition he was in after the resection. She came out and agreed with us on that. She also gave us such a great since of hope with Elan depending on the next MRI in about a month. The fact that the past 2 MRI's showed no change is pretty amazing to all and the team was in agreement with it looking like there isn't any live tumor in him as of the last scan. She did come right out and say that they have seen AT/RT usually come back right away and if it doesn't show growth at the 6 month mark (the next MRI) Elan's chances of survival/cure really go up. She also said if next July 2013 (the one year mark of ending Proton Beam) he still is the same we can breath! How amazing? Of course everything rides on the next MRI and if there is even the slightest growth at anytime we really are totally out of options for a cure and will only be looking at extending life a few short months to a year or so. Either way, we know we made the best chooses for Elan based on his resection and condition after it.

So you may be wondering how he is doing? He is doing great! Erik took this week off and we have been staying home doing a few day trips and just enjoying a few low key days. So nice to just be normal for a bit... we didn't have any Dr. appointments and only speech for Elan on Tuesday so really a great break. I have photos below and some videos too so you can see how well he is doing.

You are also probably wondering about Finn... he is great as well! We finally received the call that there was an opening at the pre-school we have been wanting to get him into. It is a progressive pre-school called Open Door. It is a wonderful place for us! When Erik and I heard about it we knew it would either be 100% amazing or 100% awful. Thankfully it was a perfect fit. The director even had a grandchild go through cancer treatment recently and totally understands what we are going through and has been amazingly supportive. It really is such a connection when you meet another person who is dealing with pediatric cancer day to day. She understands the struggles and concerns.

The kids are such great kids too. I also love the fact that kids can't wear any named characters to school as it "hinders creative" play :). They also have a "holiday free zone" so as to not "stress the children out" and to have a predictable environment - totally love it! They also have woodworking where they use actual tools and teach responsibility. It was so cute to see the first day I went. One of the boys even gave his to Finn for a present. It is amazing to see how just doing a few consistent things creates peace within the classroom. It is mostly boys so of course Finn is in heaven. Lets just say I am in my element - super hippy, dippy and all inclusive.

So here are the pictures - from oldest to newest.

Date night! My parents are out of town now for 3 weeks and watched the kids for a few hours. We went to Jake's Good Eats. It was on Diners, Drive-In's and Dives but we didn't know before going. Elan's PT suggested it when we ran into her at the gas station - how cute?

Finn and Elan watercoloring. I didn't get the best photo - when I left for 5 minutes to put laundry away =... bad idea. Came back to 2 boys with war paint all over. Bathtub blue ring afterwards to give you an idea as to how much was on them:)

SO Finn decided all by himself to have a water stand. I was looking out the window and he was pushing the wooden shoe cubby from the garage to the end of our drive. He is obviously the son of 2 sales parents as he had a display and everything. He was even drumming up business from the contractor 2 houses down. Of course he emptied the garage of all toys to take there as well. He was charging 2 cents and sold 2 and had $1.50 total. He had such a great time! Elan did too!

The dollar bill from the Bones across the street :)

Elan pushing with 2 hands! This was a huge moment as Elan would use the push toy but wanted one of us to hold his other hand. Did this about a week ago.

I love this video! Finn Helping Elan to walk!

crystal glasses from my parents - so kind! They really fit the house!

Finn buckling in "chocolate bear".

At Flying Biscuit for breakfast. Finn's choice! Notice how Elan is eating all by himself!

A hike up to crowder's mountain. We are at the peak here. IT is a 1 1/2 mile hike each way. We took the stroller which was great on way up as a work out but quite dangerous down... don't suggest for anyone! We did have fun!