Today - and First Haircut!

Today we heard awful news from one of our AT/RT pioneers.  Grant Schellhorn from a small town in Iowa near Waterloo, IA passed away today.  His family actually lives about 15 minutes from where Erik lived when we met.  Normally I wouldn't post this, but I feel the need to share so as to help others understand the world we are now living.

 

Grant was one of the real survivors, one of a VERY small handful of kids giving us real hope.  Grant was diagnosed at 16 months (Elan was 17 months) and had nearly 6 years of clean scans meaning NO cancer showing up at all.  5 years cancer free is a bench mark for many cancers but AT/RT there really isn't one.  It showed up at 6 years and didn't respond to aggressive treatment.  He was

 

I guess I just felt the need to let everyone know that even though we are BEYOND amazed at how well Elan is doing, we are never going to be in a world where we won't be extremely concerned.  Other pediatric cancers are awful as well, please don't get me wrong.  However, the vast majority when a child hits 5 years cancer free parents can rejoice and save for college etc.

 

Now please understand, Elan is really amazing, many say a miracle!  We live most days quite happy and not more overly concerned than most parents at this point.  Well maybe a bit more but still try and live as normal as we can.  I can honestly say that PRAYER and hope in the future time when children won't suffer is how we do it.  I didn't ever appreciate scriptures such as PS 55:22 like I do now! “Throw your burden upon Jehovah himself, and he himself will sustain you. Never will he allow the righteous one to totter.”  We have the joys of seeing him walking again, full of muddy pants from being in the backyard "digging for gold or dinosaur bones" (depending on the moment - it changes between the two) with all the other kids from the neighborhood.  It just is heart breaking to be reminded of the reality of us beating the horrible odds of less than 10% for AT/RT long term survival.

 

I guess it also didn't help that today was the day the clinic called to set up his next scan.  April 26th.  I hate putting it on the calendar.  We know it is every 2 weeks but it brings it to full truth when on the wall.  Of course April 25th we have him put tubes in his ears and do the hearing test while under anesthesia so 2 days in a row for poor Elan.  Brings back Indiana days!  The silver lining is he will sleep well at nap time!

 

Here are a bunch of things from the past week or so.  The big news????  Elan had his first haircut EVER!  He did get a great one from Aunt Jenny but it was before we knew Elan would be accepted by Indiana Proton Beam for radiation and it was an emotional mess.  We did it at a kitchen table.  Well this time we went to a proper kiddo hair cutting place so he could pick a car to be in.  Of course he wanted nothing to do with it and sat in my lap most of the time.  Finn was thrilled as he was able to get his done while in a police car so not a waste :)

 

FInished product of the haircut!

Finn being a prince!

 

today I was able to go to Finn's preschool and do the cooking project.  We made fruit popsicles.  Quite the hit!  Boy, are kids a hoot at 5!