Elan's Blog

So when we started the AT/RT life back in Feb 2012 I would never in a MILLION GAZILLION years think here August 27th 2014 we are living a totally normal life.... OK a Miller normal life with 4 kids, 2 of which are twins that are now 10 months and CRAWL.

All is great! We are now 2 YEARS post treatment with no recurrence! Elan is still considered NED (no evidence of disease). He is doing amazing, hitting milestones all over the place. Cognitively he is spot on if not ahead of his peers. He had his pre-school end of year "conference" and he was actually leading the pack when it came to certain ideas and things cognitively related. His speech is getting clearer and language up to age. He is running and jumping etc but just not as "clean" as other kids his age. His therapist actually released him from PT since he will go back to preschool and that will basically be his therapy - to think and look back from last July to this one it is amazing! We are really focusing on getting his g-tube (feeding tube) out this summer and be 100% eating by mouth with healthy choices (he would be 100% now if he could live on cake and ice cream and KIND bars).

One thing that came out of no where was the most lovely email from Dr. Jay Douglas who was his radiation oncologist back at the Indiana Health Proton Beam center (he as since left to a different practice). All doctors are super guarded as to how much relief etc we should have from one scan to the next. Well he emailed and said "I personal have not seen a recurrence beyond 2 years as most are way before this. Although that is comforting and we have almost reached the 2 year mark anything is possible but the odds keep diminishing in his favor."

Yes, doctor speak and always have to have our guard up but if you would hear the odds and conversations in the past from all the doctors in our lives this is like the golden ticket email and one ANY family could ever want in our situation!

Other news - Finn started 1st grade this week, Elan and Finn are starting violin lessons, the girls are crawling and pulling up!!! Yikes!

SO here are photos and I always promise more and will try! I do better at updating Facebook as can easily do from our phone but will try and take the 20 minutes to figure out how to get the app to work for blogging too!