Seattle Children's Hospital and photos!

Hi there!  I don't know why I find it so emotionally challenging to get around to posting... all is great!

So here is the update from the past 3 weeks....The brain board at Seattle's Children's Hospital discussed Elan's case at their brain board!  This is really amazing such they are one of the best in the world for brain tumors.  Just look at their site a bit and you will see why we are thrilled.  How great to get them to give us their opinion!  There were multiple pediatric neuro-oncologists, several pediatric neurosurgeons as well as several others all in the room discussing him so we felt we were given expert advice (once again!).  To give you a since of what this means, there is only one pediatric neuro-oncologist in all of Charlotte for all hospitals.

So the decision we made after talking with them is to just keep doing what we are doing.  They came back and said either do the currently recommended protocol chemo (mega high dose and 3 rounds of stem cell rescue) or really nothing.  The reason is that anything in between won't do much for the cancer and his quality of life will defiantly be compromised without much benefit.  As always they do suggest the protocol but totally understand where we are coming from as well.

Erik and I talked with the neuro-oncologist on the phone after their meeting for over an hour.  She is our age with a kiddo in pre-school so feel good that she understands all angles of our situation.  She really was positive and super honest with us.  She said they are having amazing success with AT/RT at Seattle Children's with around 2 to 3 kids a year however around 1/2 don't make it through the protocol.  Odds that are not so great in our option.

 We knew at the very beginning of this Elan wouldn't have been one to have thrived, especially at the condition he was in after the resection.  She came out and agreed with us on that.  She also gave us such a great since of hope with Elan depending on the next MRI in about a month.  The fact that the past 2 MRI's showed no change is pretty amazing to all and the team was in agreement with it looking like there isn't any live tumor in him as of the last scan.  She did come right out and say that they have seen AT/RT usually come back right away and if it doesn't show growth at the 6 month mark (the next MRI)  Elan's chances of survival/cure really go up.  She also said if next July 2013 (the one year mark of ending Proton Beam) he still is the same we can breath!  How amazing?  Of course everything rides on the next MRI and if there is even the slightest growth at anytime we really are totally out of options for a cure and will only be looking at extending life a few short months to a year or so.  Either way, we know we made the best chooses for Elan based on his resection and condition after it.

So you may be wondering how he is doing?  He is doing great!  Erik took this week off and we have been staying home doing a few day trips and just enjoying a few low key days.  So nice to just be normal for  a bit... we didn't have any Dr. appointments and only speech for Elan on Tuesday so really a great break.  I have photos below and some videos too so you can see how well he is doing.

You are also probably wondering about Finn... he is great as well!  We finally received the call that there was an opening at the pre-school we have been wanting to get him into.  It is a progressive pre-school called Open Door.  It is a wonderful place for us!  When Erik and I heard about it we knew it would either be 100% amazing or 100% awful.  Thankfully it was a perfect fit.  The director even had a grandchild go through cancer treatment recently and totally understands what we are going through and has been amazingly supportive.  It really is such a connection when you meet another person who is dealing with pediatric cancer day to day.  She understands the struggles and concerns.

The kids are such great kids too.  I also love the fact that kids can't wear any named characters to school as it "hinders creative" play :).  They also have a "holiday free zone" so as to not "stress the children out" and to have  a predictable environment - totally love it!  They also have woodworking where they use actual tools and teach responsibility.  It was so cute to see the first day I went.  One of the boys even gave his to Finn for a present.  It is amazing to see how just doing a few consistent things creates peace within the classroom.  It is mostly boys so of course Finn is in heaven.   Lets just say I am in my element - super hippy, dippy and all inclusive.


So here are the pictures - from oldest to newest.

Date night!  My parents are out of town now for 3 weeks and watched the kids for a few hours. We went to Jake's Good Eats.  It was on Diners, Drive-In's and Dives but we didn't know before going.  Elan's PT suggested it when we ran into her at the gas station - how cute?

Finn and Elan watercoloring.  I didn't get the best photo - when I left for 5 minutes to put laundry away =... bad idea.  Came back to 2 boys with war paint all over.  Bathtub blue ring afterwards to give you an idea as to how much was on them:)

SO Finn decided all by himself to have a water stand.  I was looking out the window and he was pushing the wooden shoe cubby from the garage to the end of our drive.  He is obviously the son of 2 sales parents as he had a display and everything. He was even drumming up business from the contractor 2 houses down.  Of course he emptied the garage of all toys to take there as well.  He was charging 2 cents and sold 2 and had $1.50 total. He had such a great time!  Elan did too!

The dollar bill from the Bones across the street :)

Elan pushing with 2 hands!  This was a huge moment as Elan would use the push toy but wanted one of us to hold his other hand.  Did this about a week ago.

I love this video!  Finn Helping Elan to walk!

crystal glasses from my parents - so kind! They really fit the house!

Finn buckling in "chocolate bear".

At Flying Biscuit for breakfast.  Finn's choice!  Notice how Elan is eating all by himself!

A hike up to crowder's mountain.  We are at the peak here.  IT is a 1 1/2 mile hike each way.  We took the stroller which was great on way up as a work out but quite dangerous down... don't suggest for anyone!  We did have fun!

Fun time!

 Here is Elan a few days ago!  So proud of his confidence level growing!

Finn's art.  Story keeps changing on this one.  

FInn's art - his gymnastics class.  So spot on too!  They put the circle mats all over the place so they know where to go next.

smoothie face

matching!

Latest MRI

Hi Everyone!  Sorry for the length of time between postings (again).  I know several are wondering about the latest MRI.  It was stable!  Of course, this isn't what we were wanting and hoping/praying for but we will take it!  Now it could just be scar tissue (which is what we are so praying for!) but because of the likelihood of it being dormant cancer we are going to go forward with some form of chemo.  The fact it was stable is great but AT/RT is literally the most aggressive brain tumor out there and it can be dormant for years and start up with  avengence so we don't want to take our chances.  Both of us feel comfortable with our decision, however what type is still the question we are trying to get to.

We both strongly want to keep away from the High Dose chemo for the same reasons as back in March.  This time we have been able to do more due diligence with actual facts in hand regarding Elan.  Erik chatted with several doctors the past few days for second and third opinions at several world renowned hospitals (with AT/RT we get an doctor to talk to us - one benefit!) and the best part is Seattle Children's offered to present Elan to their brain board next Wednesday!    How cool is that?  They have 4 pediatric neuro oncologists on staff and have seen AT/RT plenty so we really feel good about the team discussing Elan.  How kind of them to offer too!  Erik talked with one of them over an hour and she had several good ideas they may discuss.  Brain boards basically brainstorm the toughest cases to come up with creative ideas.  We will see what they come up with.

Whatever will come out of the conversation we don't know but just feel really a 4th through 7th opinion is a good idea.  They are totally on board with our parameters as well as our issue with quality of life for Elan long term.  There is the idea of lowering the chemo dosage as well as spreading it out further to keep his blood counts up as well as help with toxicity.  The question is will the dosage really work?  We are already on the "Elan protocol" so maybe this will be another chapter of it.

Everyone is doing great here.  We put Finn into gymnastics and swimming one day a week each.  Elan came down with a cold a few days ago - the first time he has gotten something since Feb really but already doing well.  He still is just walking with one hand all the time and just doesn't have the confidence to let go.  The leaves help with us stomping them like dinosaurs for PT.

Fun times in our new wagon!

Elan helping me put it together

Party at my parents!

dr appt - Panda getting an exam too.

Meeting night - Elan stays home so he can go to bed on time.  Eik appt this night!

Finn getting a haircut - special treat in the police car!

Balloon Fest from a 2 weeks ago - a ton of fun!

boys eating breakfast and playing with clay.

Finn's "creative" superhero outfit

Sporting their NEW Backpacks from Seth and Jenny!!!!  It only took me 2 months to post the pictures - sorry guys!  as you can see a HUGE hit!

being sporty

I just had to add all the photos - they were so cute!

garbage helpers

Special breakfast for Finn (egg in the middle - didn't really work but by adding the other stuff he ate it.)

Cleaning the rug my grandparents gave us... filled with Big Lots cleaner from about 50 years

we ended up cutting a small hole and shaking it out....

This is only 1/2 of it... I put finn in for scale.  We were able to get all of it out and it no longer smells!  It looks fantastic in our living room too... pulls everything together.  I will post later a final photo of it (laundry everywhere right now!)

Notice the big pieces of hotdogs (organic, grassfed of course!)

My Grandad

Tonight is a very special night for my grandparents.  My grandad is being inducted into the Colorado Hall of Fame for starting a ski resort - Keystone in Keystone, Colorado in the 70's. It actually set a standard of environmentalism for all ski resort since then.   One cool thing he thought of was to have helicopters brought in to put up the lifts so as to maintain the trees etc.  It is also the first true Family Friendly resort as well.  This was the first of it's kind.  He also was the one to bring in all of the investors (unfortunately our family isn't one of them, but they do have a GREAT plot of land at Keystone where they live!).

He truly is my role model in so many ways and has always made me feel like I can do anything I put my mind to.  He always made me feel being female didn't matter in life, well except when I wanted to go duck hunting with him :).  I just love this article in their local paper... it really describes the two of them perfectly!  I love how he loved to hire women "because they are smarter".  I think he is just trying to keep peace at home after 66 years of marriage ;)

http://www.summitdaily.com/article/20120826/NEWS/120829851

If it wasn't for him and my grandmother I don't think I would be the strong individual I am to handle what all of us are going through.  I am often told (by my brother in a derogatory way when he is mad at me :)) "OK, JANE"(my grandmother's name). My mother says I am a bulldog just like her too... I am glad as I have gotten everything I wanted for Elan because of it!  THey have been so supportive and even drove from Colorado to Indiana to see the Proton Center for themselves.  They are both 89 and still downhill ski!  We hope to join them this year and teach Elan to ski in a few more.

MRI Day

So Elan is right now in the MRI while Erik and I are in the cafeteria waiting.  We went up to the children's hospital to basically distract us and ran into several of Elan's nurses as well as both doctors who took amazing care of him in the PICU (Ped. Intensive Care Unit).  Just great to be able to give them great news of how well Elan is doing.  They don't often get this kind of news. 

We had the same anesthesiologist as we had a few times ago.  He is so kind and caring.  I would guess late 50s.  He always is so thorough when going over Elan's history and so positive!  He and everyone there were blown away at Elan's progress.


We went to see Elan in the recovery and we had to wait 2 hrs to rule out Malignant Hypothermia - rather a shock.  This is the first time Elan really has ever had an issue with anesthesia .  IT would be unbelievably odd for him to have it esp since this is around the 40th time he has undergone anesthesia but his breathing went a bit out of whack.  If it was his 2nd or 3rd time, yeah, but 40 or 50th?  Not likely.  They switched monitors during it all but at the same time changed a few other things so just wanted to rule it out.  It came back negative which is great because unfortunately he will be going under anesthesia for several more years (hopefully!)

Finn had a blast while we were at the hospital with my mother and even wanted her to take him to gymnastics.  He is so cute there!  It is at a real gymnasium so all the great equipment.  There are 2 girls and one other boy during his time.  A young man -  I would guess around 16 goes and trains - the 2 boys are in awe when he gets on the horse - so adorable!

in recovery with 2 nurses who are regularly up there and our anethegiologist

drinking juice - arggh! (See below why giving that to him) and watching netflix - what would we do without that these days in the hospital?



Rhonda our nurse this time.



So we were feeding Elan with a Whole Food meal replacement (photo below for those feed tubing and wondering).

well I have only used a few times and was a bit distracted so didn't stir as well as I should have.  So we clogged the MicKey!  This is the first time this happened in all these months.  Thankfully we were at the hospital.  Well they tried to get us a replacement there and they made tons of calls for us but of course didn't have his specific size in the entire place.  We only replace every 3 months and insurance hasn't approved of a replacement - as if not having an extra is a good idea.  What if he couldn't take anything by mouth?  It was leaking too after all of the messing around with it...  We ended up not having one at home after all.  Erik was at work and started calling around with one being sent overnight as the resolution (may not be covered.... we will see about that :)) The hospital sent me home with Coke to eat up the clog once I get it out of him.  Well I had to take Elan's micKey out all by myself and keep him on his back (not easy).  This is because it is just like an ear piercing in that it can close up again so had to be fast... but after about 20 minutes got it out.  Just not a fun day!

Well Elan and I had fun after that just the two of us!

Playdough outside after being inside.  Notice Elan is drinking milk now (goat's milk)!  He does water out of a regular cup too without coughing etc.

Quick Update

Hi!

So Erik called the doctor yesterday who published the paper and she was so kind to call us back last night!  She didn't have a whole lot to add but just nice to thank her in "person"  and tell her we are so willing to be contacted etc.  We asked her what motivated her the reason Yale did the study was because they had an adult patient - how statistically odd is that?  Less than 50 cases ever of an adult.  Blogger wouldn't let me save it as a PDF so if you want to read it just email me at erik_karrin@hotmail.com - basically, Elan received the absolute best treatment possible based on 144 patients retrospectively.  This paper, though very small statistics, really gives us peace of mind.  The chemo protocol is just so devistating and it would be wonderful if we cure Elan without it so others can follow the less toxic path.

I just hope with us, the previous girl in Iowa 7 yrs out cancer free and the actual documentation of more patients, even though retrospective, will help a future family to get what they want without the heartache we went through.  Being turned down by one of 4 proton centers in the WORLD able to handle kids (my parents are so amazing btw they were so there for us!);  This is because each treatment they have to be inoculated (put to "sleep") so they have to have a full board of anesthesiologists - all super amazing and awesome - i wish they were here for Elan's MRI's! -  Elan was 36 times in Indiana BTW and every time he has an MRI etc.  At this point I think Elan has been put to sleep around 50 times.

 But being accepted by one is BEYOND amazing esp. since we are not doing standard protocol.  We just know how loving and compassionate Indiana is.  Cancer kids up against cancer kids really is a tough deal at other locations IE Boston. when it comes to who gets the beam and who doesn't everywhere else besides Indiana.   Thankfully Indiana is non profit - the only one that isn't!  They were willing to take us on.

 It is so sad to know that so many people don't realize how unscientific the world of science really truly is vs what they think.  It is all politics.  Thankfully 10 years of being in the science world prepared me for the truth of the situation - even though I was still shocked at how political it was/is.  I am just so, so thankful for being able to talk to doctors and read statistics!  I know that plus our personal belief in not wanting to have blood transfusions because of Biblical principles we have our Elan.  An Elan that is at the park, back yard, picking his nose etc. We were given 1 to 6 months and sent home with hospice.  Tonight we have a kid saying new words and singing super annoying Barney songs! 

Below are videos for my Grandma Jane - she is amazing By the way!  See, he is doing great! (You have to push the play button and wait a minute for the videos to load)

Interesting Link

Here is a link from a medical conference this May - this is a MD student's poster session.  She references the exact same data we found to make the decision to do just Proton Beam with Elan.  How thrilling to find this!  Hopefully others will be encouraged by it too and feel more comfortable turning down the standard protocol.  Remember, the current protocol is only based on 23 kiddos.  Crazy!  

http://www.youtube.com/watch?v=6WkHx372xn8

Here’s a link to the article:

http://onlinelibrary.wiley.com/doi/10.1002/cncr.27373/abstract