Elan's Blog: One Year Ago

Unbelievably we are 1 year post treatment (Proton Beam) with Elan this week! It is amazing how fast this year has flown by! Last year I said we would have a huge 1 year AT/RT NED PARTEE :) Would I have EVER thought to be with a healthy NED Elan and pregnant with TWINS???? I think not! With our crazy schedule the past few weeks, daily lives, and quite honestly my sanity a party didn't come to happen.   So please have some ice cream and cake and think of Elan :)! Ours would have been gluten free, dairy free, so you probably lucked out :).

Thankfully this week falls on the same week at the 24 Hour of Booty and our darling neighbor, Sean, is riding in Elan's behalf as you all know from the last post. So the four of us are going to take this as our opportunity to commemorate in a way by heading there and support him.   Thanks so much for all who support Elan!

One year ago today we were in the hospital with him for a few days for what we were afraid of being continued growth but ended up thankfully just being dehydration. To be NED today, a year later, and have the boy saying things like he does is chilling.   A year ago he had a vocabulary of 5 words and no volume.

A few funny things he said today - when I woke him up from his nap to go outside and play in the sprinkler of "no mom, I am busy" and then laughed as he obviously knew it was a joke for him to say that. Another was when he pinched his finger in the door and told the door "it needed a time out". He also is so funny when going potty now. He sings a song and just is so normal!

I don't think I will ever not feel the tears swell up when he does something amazing and think about how fortunate we are to have him alive with us, let alone making progress again on track with his age group. This was beyond our wildest dreams and we never thought we would have a day go by where we were not overwhelmed thinking about our child's death. But honestly, there are days when I really don't think about it now but don't get me wrong there are still thoughts! Just not looming like they were.

We are beyond grateful for the past year of "normal" life for our little boy. So many other families are not as fortunate. We have met many AT/RT families along the way this past year and a half who don't have their little one today or are dealing with severe relapses etc. As of today, we are not in the relapse group and hopefully we never will but the reality is that it is a real, real possibility. Kids relapse 6, 7 and 8 years out. Any "weird" thing the kid does brings it to mind but prayer does help keep perspective most days.

We have his next MRI on August 5th so please keep Elan in your prayers! Thank you all SOOOO much for your support, love and kindness towards all of us! Here are a few photos from this week