Shout out to my Pearson Peeps :)

I have to admit, yesterday was a hard day but at the same time it was full of love from my colleagues.  I work with some of the most kind and thoughtful people on the planet.  I think everytime I had a sad moment the past week or so I had a text, voice message or email from someone at work just checking in.  I think it should be called 'My Pearson colleagues show the love week'. 

I received the kindest and most upbuilding email last night from one of them.  I won't say who as to not give too many personal details but they said several things that were JUST WHAT WE NEEDED.  This person had a close family member go through what we are currently experiencing and in a way, it was just so reasuring to know we are not alone with kiddo cancer.   This person also said not to worry too much about Finn.  We needed to hear that too.  Things like this are really so unexpected and have uncanny timing.

I also can't get over the financial support our friends at Pearson (and Wells Fargo too!) have shown.  My manager Stephen asked what they could do financially and at first we thought we should do something for AT/RT research but after chatting with our social worker she said we probably should set up an account just for Elan. She said this is what families do for cases such as his who need out-of-state treatments, etc.  Well, we set up the Elan Miller Donation Fund at Wells Fargo and WOW what support!  When I looked at the account last week we didn't expect to have anything there but Elan had several hundred dollars donated to him already!  How kind and generous!  We don't have any information as to who donated so please know how thankful and appreciative we are! 

Monday - "Doctor Day"

Mondays are our official "doctor days" even though we can stop any of them at any time to talk.  Well Erik and I hadn't seen the MRI from May 16th and Erik really wanted to see it.  I was hesitant since I knew it had "noticeable growth".  Well we finally sat down with Doctor Douglas and it is basically the size it was when we resected.  This isn't good news at all.  Of course this is all before treatment (and Dr. Guo's tea :)) but our baseline for starting is much tougher.  The doctor didn't say it wasn't curable but does make it that much harder... So basically from a 10 to 15% to more like a 5% even though he didn't say that.  If anything it is giving us more time!  Just a lot to wrap our heads around.  So frustrating that we didn't get him started earlier but then we wouldn't be doing the cranial spinal which is giving him the absolute best shot.  We just need to remember that we prayed for everything to be black and white and to get the right care at the right time.  We need to just remember it is in his hands and we are at the absolute best place possible for him!

Dr. Douglas was so kind and loving about it.  I started crying and he just hugged me.  Really reassuring and saying we are doing everything we can and that this isn't the only shot.  He then gave us a few other options we have if this doesn't stop it completely so not to give up hope of complete recovery.

The other bummer is that Elan caught a cold... this is the first time he has been sick since the hospital.  I am certain it is because we stopped the vitamins after talking with Dr. Guo.  SO we are starting them up again!  SO one more level to the food prep but totally worth it! 


On a much happier note - my grandparents arrived today!  So nice to have them - they are so easy for a few days and a great distraction.  We took them out to a pub for fish and chips which we always enjoy doing with them.  We also did our traditional wine and hor devours before we went out.  So nice to be able to have our kids know my grandparents and learn of their quirky ways :).  If you notice in the photos we had a great time.   Grandmother always does her best to make things "classy"... if you look closely you will just see how cheap and desperate we all are (hint look under the wine bottle and flowers).

We then stopped at the Chocolate Moose so they could have that experience too with the kids.  I think in all we consumed 3000 calories in 4 hours.  Fun!

Here are some pictures to recap:

Finn entertaining everyone before fish and chips.

One other good thing... Sunday I went to Once Upon a CHild to see if there was a train table or something similar.  Elan has one at home and really cruises around it etc.  He has stopped doing it so much here - well I found one and guess what???  5 hrs of cruising today!  Great to have outside as well.  Pretty cool as has a lid for doing blocks but then take it off and has all sorts of tracks - makes him get on his tippy toes.  Great find all for less than one Physical Therapy Copay!

We brought a few train tracks and our Thomas trains but the center had killer things we could borrow - hello Cranky!  You will see him featured for the rest of our visit - Elan's ab fab!  So cute - he goes - CRANKY (well we understand it) and then smiles and laughs!

biking today!  Boy are the toys from the Proton Center awesome!  One of the nurses has a 5 and 7 yr old both of which have new bikes so she gave us the one Finn has for the time we are here - so lovely!  Thanks Jennifer!  

he is sooo proud!

Trip to Indianapolis

Once again - we wanted to sleep in after our fun last night - we made it to 8 AM!  Elan woke up to nurse then Finn scampered in a few minutes later.

 I had to make Elan's food for the day which took a bit of time so the boys played around a bit and ate some porridge.  I am trying to be more gluten free for all of us.  Hence the uber cool breakfast of "porridge".  After our visit to Dr. Guo and him saying everything in moderation I went a bit crazy about what to do.  Poor Elan was on such a restrictive diet and he had lost about 8 oz since we have been here and all of our craziness so I have started to add a lot more to his food.  He was so excited to have yogurt again - it made me feel awful I had been restricting it so much.  We had gone to a nutritioist/ vitamin/chiropractor and she said he was allergic to dairy and to stay away from it but the other day Elan had a break out again in his thigh area and he had almonds... so not eggs or dairy but almonds as the issue I think... we will let the future tell.  He does just fine with dairy and she said he would be fine with eggs and nuts... go figure.

I have figured out that the only way to get 3 cups of his ACE Brain tea is to use that as the liquid in his tube feedings.  It has been working pretty good as there is NO way that he would drink a sip of it anyway.  So I made the tea (i will go into detail at some point on the arduous time that is!), made food and then we were off!


 We had planned on going to a local artist/music fest as well as the zoo.  While in downtown Indianapolis we drove by the Assembly Hall - so cool!  The traditional limestone of the area and looked like the Lincoln Memorial building... didnt drive back to get a shot but we just happened upon it while driving by and were in awe at the architecture.

We first headed to the Independent Music and Arts festival and it was really great!  So much more our speed than any other fest before.  Rather Etsy in nature with food trucks - so awesome.  They even had kid superhero capes (didn't snag one as kids already have one).  I did pick up a necklace which I have had the idea of ever since Elan was born (21 months today!). See below:

We had a great vegan thai sandwich (so OK I was going to be Vegan the entire time we were here or do a clean diet - first meal really fitting that criteria and we are 2 weeks in... Oh well!) then we walked around a bit.  We then walked a bit and then headed to a second-hand store which specializes in MCM furniture... really great stuff and decent prices for what it is - but we have no space in our car (or $!) and really, can we justify a Knoll chair right now?  I realize it is a 3K chair for $600 but we didn't spend $600 on anything else in our house besides Finn's bunkbeds????   It was still fun to look.

We then were on our way to the zoo - but wait!!!  what did I see????  A huge kid's festival put on by PBS and they had ELMO!!!!!!  It was an easy conversation - "boys - zoo or Elmo/Curious George/Clifford and a bouncy house?"  You guessed it, Elmo won (and for us too since it was FREE).  So we fulfilled every kid's dream... Elmo, Curious George, Word Girl (new to PBS but Finn loves her - she solves crimes with spelling - such a concept). and Clifford!  We had to wait for 30 minutes for most so didn't get a pic with George but the boys did get to watch him which seemed to be cool enough.  Here are the fun pictures!

We then had lunch/dinner around 5 at a pizza place - yummy! in cute area of town.  So i ran inside for a minute to wash my hands and come out to the 3 guys... Elan started a joke of picking his nose!  He has been doing this the past day or so but this time he did it and laughed and then Finn did it and laughed - of course it is the first time Elan really ever pursued a joke and it has to be all about buggers.

We then headed to Value World (just like Value Village in Charlotte).  Rachel told me all about this and it has been much more chilly here than we expected so I wanted to grab a few pullovers for the boys.  Prices around $1.50 which was great!  I was able to get what we needed plus a few glasses for the house since we have my grandparents coming in a few days and they are scarce.  Erik was in the car with the boys watching Thomas as we had a long day and we were hoping they would fall asleep.  Well they hadn't...

Just as we go to start the car and - the battery was dead!  Erik had it turned only to the mode that kept the video going but had the headlights on and a few other things like his cell phone powering up.  Erik went into the store to see if anyone would help us out but of course no one there had a car (it is Value World - think lower than Goodwill but way under picked so don't you dare go there!) Thankfully i remembered we drove by the fire station a block before the parking lot so he headed there with Finn.  I got out the jumper cables and popped the hood and was ready for them when they came back and had Elan in my arms... it took 20 seconds for a nice hispanic man to help me out.  It only takes a girl in a dress with a baby and you get a guy to help in 20 seconds!

Not being able to turn photos drives me nuts!!!  notice the socks on the elephant - it was the knitting day for Indianapolis - where people sporadically knit and for 4 hrs around town.  Cute.

What a great day. Long, but very satisfying. Got back after dark and it still took a few hours to put the kids to bed. The sun doesn't go down until almost 10pm!

At the lake

Thursday we had 3 people over for dinner who are renting from the same non-profit we are.  We met them last week and so invited them over... of course we didn't take a photo!  Jeremy is a sweetheart in his mid 20's who is getting radiation for a brain tumor, but only has to do focal.  He has amazing friends that came with him this week.  Their names are Nick and Athena and they are such kind people.  They know each other from their church. It was a nice opportunity to encourage one another about what we are all going through.

Today, Friday, we got Finn out of Camp early so we could go to the local state park. They have hiking and swimming there. Elan's anti-nausea meeds make it hard for him to nap, so we just put the kids in the car and drove. The park charges $5 for parking so we decided to 'hike in'. The path was overgrown with poison ivy - Erik's arch nemesis! We think we made it unscathed. A mile later we reached the park and had to buy snacks and gatorade at the campground's store. By the time we got to the little lakeside beach we were hot and tired. While the kids and Karrin played in the lake and sand, Erik jogged 2 miles uphill to retrieve the car. (best laid plans of mice and men) At least the sweet guards at the gate didn't charge us for the quick pick-up operation.

Elan didn't want to do much walking or playing at the beach at first, but he came around and had Erik walk him a bit. It has been tough to get Elan to exercise. He often just begs us to hold him. We think he's all right, we just need to capitalize on the opportunities when he is in the mood. Sometimes we can get him in the mood by making it fun. We don't have a 'train table' here, like at home. He loves to stand and play at that. So, we are looking for one second-hand here (or something similar). That should help get him on his feet. We have had success getting him to push himself around on little tricycle things indoors and outdoors.

Trip to Chocolate Moose

So pretty normal day around here.  Took Elan into treatment at 8:45 so Erik dropped Elan and I off and he then took Finn to camp then back to us to pick up.  Elan does great and no complications so far - he isn't very tired either which isn;t how he is supposed to be doing :).

So we tried to do naps but didn't work so we picked Finn up from camp and then took a bike ride along the "b line" trail.  IT is a bike path made from an old train line.  We rode to the Chocolate Moose - now this is apparently a super famous place made famous by the also famous music video "Jack and Dianne" by John Mellencamp.  Thats right folks, I am now in John Mellencamp territory!  Of course you need to see this for yourself the link - for those who prefer not to relish in their 80's glory can click to 50 seconds to see the VERY place we were at for ice cream:)  The BEST part is they serve Vegan ice cream... yep we are in a college town. 

http://www.dailymotion.com/video/x1vp12_john-mellencamp-jack-and-diane_music


JM is apparently dating Meg Ryan so we have been told and she drives a red convertible.... be on the lookout for sightings :).

WE then rode our bikes home, had dinner of salmon and left overs and then headed to the local congergation to enjoy the meeting. It was so encouraging for sure!  They had a local needs part regarding not being discouraged during trials from health - how appropriate!  The friends there were so kind and several of the parents want to have us over.  THere was 2 couples within a few blocks of our house who gave us their numbers in case of anything which was very sweet.  We met a 15 year old and she offered to baby sit too.  THings are working out! 

Sunday - Dr. Randy Hock previous patient...

Today started off OK... weekends are great since I can nurse and feed Elan as soon as we were up. This isn't the way it is during the week as he can't eat for 8 hrs before sedation.  Been somewhat OK so far since he has 8:45 or 9:30 appointments but next week he has 2 10:45 - SOOOOO not looking forward to those.  I think we may wake up and then drop Finn off and head to a park for a bit or something.
We had a bit of a Finn melt down when we were about to start reading our Bible for preparation for the congregation meeting we were going to today when he really acted up.  Lets just say it ended with him peeing on himself out of anger.  We then were able to get out of him about what is really going on and had a good 45 minute conversation regarding Elan and the cancer.  So therapeutic for all of us.  We left the house with our smiley and kind child - only took 2 hrs to get that!
We were quite late but many had seen us before and I think our story has gotten around since many smiling faces.  There are 3 English congregations and one Spanish here in Bloomington, IN but we have been just attending one.  We like the 12 PM Sunday time slot - try and sleep in! :).  So Elan was a bit loud so I went in the hallway for a few minutes with him.  A nice lady around 55 to 60 came up to me and said "you are the one with the  child at the Proton center, correct?" and then she asked which one and said it was Elan who she then loved up.  She then proceeded to tell me her son was diagnosed with a bad leukemia (cant recall which one) 14 years ago and how he had only 1 in 9 chance of survival - but he is here!  She then said "if only you could have Dr. Hock".  I then said "you mean Randy Hock?"  and she said "Yes".  I then said he is part of our oncologist group of 4 in Charlotte, NC!  How crazy is THAT????  We had known he moved from Indianapolis from the beginning and had been instrumental in getting us into Proton Beam (of course after we had asked for it).  She was as shocked as I was.  Now understand there are 4 congregations in the town and how many pediatric oncologists in Bloomington to Indianapolis???  Indianapolis is a good hour away from here as well.

She then explained how Randy was by far the BEST oncologist they had and offered several out of the box options - which she said is the only reason her son is now alive... sound familar to Elan???  She went on to say how Randy had actually been upset at first because they wanted him to explore other non-blood options instead of a full transfusion. However he did chat with the liaison committee and was given a list of other doctors who agree with our preferences to chat with. One happened to be a good friend of his from residency back in the day. After these conversations he was fully on board with them and realized it is truely just good medical practice to try other things first. Well 14 years later we are benefiting as he preferred not transfusing for Elan when his counts went low and went straight to Epogin and iron boosters which worked fabulously without risk of infections brought on by multiple transfusions. So I thanked her for all her hard work and we are benefiting from his great "out of the box" thinking. We just felt a real hug from above and answers once again we have the A+ team!

Pictures from last day in Charlotte before we left

Here are some cute bathtime photos from day before we left for Bloomington:

Here are the vitamins Elan is currently taking.... fun!  They stain loads of things the color of curry.  Loads of fun to try and get out!