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

Elan at the eye doctor yesterday.  They still can't get over how cooperative he is there!

eye doctor fun!

flowers for the house.

24 Hours of Booty for Cancer, potty trained, Miller Grandparents visit!

Our dear neighbor is riding the 24 hours of Booty this year and asked if Elan could be his mascot!  He is beyond loving to do this as cancer has affected his immediate family but he felt compelled to have Elan be his little guy!   We so appreciate him riding this weekend for Elan and getting the word out regarding pediatric cancer!  This is a big deal as it is one of the biggest fundraisers in the country.

It is a great organization as 1/2 goes to LiveStrong (a great resource site for us during the very beginning regarding Elan's diet) and the other 1/2 going to local Charlotte cancer charities.  If you would like to donate, here is the link:

http://www.24hoursofbooty.org/site/TR/Bike/General?px=1392768&pg=personal&fr_id=1230#.UeWpYgDg45s.facebook


Other news is that Elan is now potty trained!!!  Check out his big boy underpants!  He has 2 full days in a row of being dry.  So proud of him.  He is even telling us when he needs to go.

Look who is sleeping in a big boy bed in Finn's and now Elan's room!

We split Finn's bunk beds 

boys outside playing in car.... notice how elan is just climbing right in on the side.

Grandparents visited over the weekend.  BOys made a banner for them.

and sang songs

and a parade!

presents!

since Elan slept several days in Finn's room we did the bunk beds the right way as 2 twins so moved the head boards.

boys doing some more projects

playing with Grandma Shirley!

Camp Debbie Lou

So we were contacted a few weeks ago by our Child Life group at our Hemby hospital and told they picked us to be the ones to go to the Debbie Lou family camp this year!  It is a 4 day camp put on by a private family in honor of their sister who passed away from cancer several years ago.  They have 7 families hand picked from NC and SC and we were one of them!  They only do it for 2 weeks a year so pretty cool to be asked. 

They had horse riding (I couldn't do it because of my "condition" :( ) go carts (that either :( ), archery, swimming, fishing, paddle boating, crafts and all meals taken care of!  So well put on and so 1950's feel with the family camp. 

The other families were all so sweet and loving.  One family had a boy with the type of brain tumor we were hoping Elan had. He looks so great!  He actually went to Indiana just a month after us and the mother is expecting too!  She is 31 weeks so neat to have someone on our same path.  They live up in the mountains about 2 hrs away from us.  It was hard to be around other kids with cancer, even though all looked so great and had so much fun.  Just so sad to see cancer affect so many kids, even though just 6 families.  It just brought it all back up.

they had one councilor per person - so more volunteers than campers.  Elan had 2 helping him out.  Needless to say I actually was able to take a nap most days!

It was just so full of love!  They even put on a beautiful "date night" for the parents while the kids had a pool party.  They obviously get what it really is like to have a family member with cancer.  It is so all consuming and you get such little time as a couple.  We are so fortunate to have my parents here, but even so the day to day normal life and then the day to day cancer care life just takes up so much energy and time.  The family said they have had couples come through that hadn't been out alone in over 2 years, not even the grocery store, I so believe that!  Just nice for them to do this for everyone!

The nephew of the family actually adopted a little girl that has/had cancer and they live in Charlotte.  Guess what?  They go to our same oncologist, Dr. Bell!  the little girl was adopted from China and had already gone through treatments and is in remission (cancer free).  Pretty neat and small world!
So here are some fun pictures!

family art project

at the playground

Finn with his super buddy Titus.

Elan's eye.  All puffy from all the gluten and dairy the  day before...

So the night before we left my poor mother went into the hospital as her appendex had burst!  She had to have emergancy surgery and it was pretty serious.  Thankfully she wasn't too toxic yet.  She is still recovering but doing well now.  I won't post her photo of the day she went in (I do have some kindness to me :)).  Below is our lovely friend that took our meal orders the entire time we were in the hospital with Elan!  We bumped into her at the cafeteria while waiting for mom's surgery (it was almost 3 hrs!).  Her little boy Noah is in and out of the hospital with Sickle Cell Anemia.  She has such a positive way about her, I just know he is in the best care!

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