Friday June 29th

We had an 8 AM treatment which was nice of course to give us some structure.  Elan has been having some discharge (snot) when waking up they have to suction out but beyond that still textbook boy! 

Erik and I really feel like the Proton Center is a great place but I really want to get more going over there for the kids in the future.  I mean, it is on IU property!  I chatted with Nancy (concierge) there and she said they are working on getting a child life person to come in once a week for a few hrs to do art with the kids but SOOO much more could be done - and really no cost to anyone.  They have a big music dept so why don't they have some students come and do music once a week for a few hrs as well as the teaching dept etc.  They have a cool Midcentury House part of the Proton Center that can host these types of things.  Really good for the IU student's resumes and great for the kids. 

I also chatted at the beer/outdoor movie event put on by New Belgium with the local community bike group leader a few weeks back.  He said they would be willing to let Proton kids have a free bike during their time here.  Thankfully one of the nurses hooked us up with one for Finn and we brought ours with us but not everyone does.  I am going to meet with the Proton Director and go over some ideas this week.  I mean why doesn’t the Chocolate Moose give every kid a free cone on their last day of treatment?  The local theatre gives each family a set of tickets to the play, a pizza party for the kids and parents once a month etc.  Why not give the kids a countdown calendar, etc?  It is just because it hasn't been brought up before.  Erik and I have been making the time here fun but not everyone is like us or can afford to do anything.  So another project for me :)

So after treatment Erik and I met with the therapist from the Olcott Cancer Center.  This is something Erik and I wanted to do to see what we can be doing to make things better for our situation, etc.  She was so great!  We have wanted to meet with someone ever since Elan's diagnosis but either didn't get around to it or the person didn't really specialize in our situation.  Her specialty is dealing with families and cancer.  BTW I brought up the deal of things for kids at the Proton Center and she said she is in total agreement and other families have wanted more but no one has really taken the lead to make change - sounds like up my alley!

We did it before picking Finn up from camp so just had Elan so we could really talk. Even so we had to switch off taking Elan to the fish tank but it worked. She just kept saying she was so impressed with how much we communicate with each other and how healthy we are regarding our decisions, etc.  It really helps that Erik and I communicated so well before all of this happened and made our marriage our number one priority and relationship.  My parents raised me to over-communicate but now I really appreciate it!  Erik has learned to be the same - regardless of if he likes it or not :).  We went over how we just have to keep people who are positive around us and basically keep those who don't want to be that for us at bay.  .  She said that is exactly what we need to do and focus on the 4 of us right now and anyone who doesn't want to understand that or help facilitate that should be kept at a distance for now. We need to put all of our energy towards the 4 of us and if anyone is taking energy away from that, then we need to make changes.  Fortuantely those who really care about us are 100% supportive and caring.  It was uncanny timing to say the least as Erik had to deal with a stressful conversation minutes before we pulled up to the appointment.  We were able to talk in detail with her about his situation and she really helped him to conclude we are 'spot on' on handling things like that.  She said she sees from other families how those who you would never expect rise above do.  SHe also mentioned how there are those who make things all about themselves regardless of the true situation we are dealing with and we need to be careful to not waste our energy on it.  Good advise for just day to day living. If one thing is learned through all of this it is for me to not waste my energy on things that don't keep the 4 of us together.  She told us we should 'lead a workshop' on how to handle having a kid with cancer.  This made us really feel good as well as relieved, knowing we are doing everything we can for our own mental state as well as our kids.  She said, just keep our marriage strong and not let others create friction.  She also gave us advice to thank each other for all we do.  Basic but great advice!

At the end she said she just couldn't get over how well we were handling things.  We explained how number one, we have our faith and hope that no matter what the outcome we will be together as a family in perfect health in the future.  She said she sees so many people without faith lose all perspective and she knows how helpful it is to have it. The other thing Erik shared was how we are prayerful about our treatments and what we seek for Elan.   Lastly is all of the support from everyone and the prayers from all of you!  We KNOW prayers are being said just because we still are finding as much joy as we can.  We know that this is a serious situation we are dealing with but we want to have as many fond memories as we can... one can deal with it in misery or in joy - we choose joy. Now this doesn't mean we don't have awful moments but when we have those moments that is right when we recieve a loving "thinking of you" text message, a call or an email - always at the right time!

Enough about that!  So in the evening we finally made it to the local theatre production of Go Dog GO!  This is by far our boys favorite book the past 6 months, so we knew we had to go.  It was adorable!  They literally did the entire book - a real treat.  Cute because Finn and Elan know all of the words and recoginzed several of the scenes.  Here are the pictures:

One thing I totally haven’t really mentioned is all the support from other patients and families at the clinic.  Everyone really is so kind and helpful!  There is a 15 year old boy named Kenny getting treatment and his time is often around Elan's so I get to chat with his mother from time to time.  She is so loving!  Well she made us the Amish Friendship bread the other day - how yummy and kind!  Kenny has a cancer caused by previous treatment - I think 11 years ago.  Well, guess who was their doctor back then?  Of course - Dr. Hock!  Now they live in Indianapolis so not as odd - but still really cool!