Chicago - Sunday

Sunday we headed to the Shedd Aquarium.  Fun but several things closed - so kind of a bummer - oh well!  We also learned AFTER the fact if used a Bank of America card would be free - we so need to get one... wish Wells Fargo did that!

Here are pictures of the aquarium - lots of fun!:

At the Rainforest Cafe - the Robles suggested and so much fun for the kids!  So loving to meet up with them!

Then we met up with Alex, Jenny, Nico and Issac who drove from Milwaukee to meet up with us.  How loving is that?  2 hr drive.  So nice to see them and get caught up and feel understood etc since they had to go through similar circumstances a few years ago.  Boy did Finn have FUN!

We then made a stop at Trader Joe's - good thing we did b/c we realized we left our camera bag in their van.  Jenny had made a gift bag for each of the boys - totally adorable and FILLED with cool boys stuff.  Finn was happy for the entire 4 hr drive and Elan has a new Woody which made  his week. 

We didn't get in until 10:30 PM and Elan's treatment at 8:45 AM so a tough morning!

First day of treatment

So we arrived Tues night to our home called "New Day". It is provided at a reasonable price by a non-profit and so great!  WE pay less a day than the Jill House which is basically the Ronald McDonald house in the area but we have our own space vs a shared kitchen and living quarters so works out well for a family of 4.  The Jill House is $70 a night and ours is $40 so a no brainer.. It has a full kitchen with all appliances, washer and dryer, 3 br and even a jet tub in the master!  We had a few groceries we brought as I had planned on not having time to go to the store the first night.  So glad I did that!

We gave the boys a quick bath and put to bed.  Erik and I had a few seconds to ourselves to basically unpack and get to bed.  Both of us nervous about next day and what it all would entail but prayer allowed both of us to sleep. Wine helped too :)

We had Elan's first appt. at 9:30 AM and he isn't allowed to eat or drink 8 hrs beforehand so we let him sleep as long as possible.  We woke Finn up and fed him without Elan seeing.  We then all drove to the Proton Beam Center which is about 15 minutes from the house. 

We arrived and Finn played in the playroom which had Lego's so we were set!  Elan, Erik and I met with Dr. Buchsbaum.  He is one of the other doctors at the center and met with him as Dr. Douglas is on vacation this week.  He was quite kind and is the doctor who cured the one AT/RT girl who had it spread to her spinal column.  .  This is basically as bad as it gets (Elan doesn't have it there).   She is cancer free 4 years out.  Dr. B is on the polar opposite of how he speaks than Dr. Douglas and the side effects.  The side effects of radiation - even though using Proton Beam is 1/3 the toxicity of regular Photon beam is still very unknown esp with Elan's age. So basically we know it will land somewhere in the middle.  The side effects are tolerable to us for sure.  The basic ones are:

IQ lowered between 5 and 20 IQ points - he will be able to learn to read etc but things will take longer for him to comprehend - basically same as Erik and me :)
Hearing loss in right ear (side cancer is at)
signifigant height difference (where Doctors differ) if he was going to be 6 ft without the treatment as adult somewhere from 4 inches off to 1 1/2 ft off
Thyroid
Pituitary
Possible fertility loss
cataracts in later life
10% chance of other cancers until 5 and 5% life time chance.
All of these things pale in comparison to regular radiation side effects!

So to continue the day....
Dr. B was a bit crazy but really put Finn at ease.  He was kind of all over the place but to give him some credit he was the only doctor there and had his pager going off so had to multitask. He has 2 kids himself both with serious health issues so can relate to what we are going through which is truly an odd comfort to us.  One was at the neurologist at the time of our conversation. 

 Finn went in and out of the treatment area during Elan's first treatment and even was allowed to see Elan on the treatment table - pretty cool!  We get to go in and put him on the table and hold him while the anesethologist puts him out every treatment.  By Finn seeing it all really makes everything not so scary to him and allows him to be comfortable about the whole process.  Here are a few photos of what it looks like. 

This is only the treatment area but we hope to see the whole cyclotron during the monthly tours given.  They are only done once a month since the whole system has to be shut down as it is radioactive when up.  We were able to watch everything on the monitors too.  Pretty cool!  The Proton Beam Center came out of the Physics dept. at Indiana University and it is the first one in the nation.  It was the testing one for NASA so basically anything that has gone into space has gone through this center.  It is rather funny to be going into the Physics lab as a patient instead of for chatting with the professors. 

I want to clarify things... AT/RT is awful but there are several kids out there cancer free 3 or more years out so there is hope for Elan.  It is very, very aggressive and low prognosis with Elan having about 10% chance of becoming cancer free.  This however is much better than what Presbyterian gave us of 0% when we turned down the standard protocol.  If you have ever been around clinical trials or case studies everything is subjective.  Presbyterian is really a great hospital and did a great job for us but they can only help us so much and deal with every type of pediatric cancer.   The proton beam center has seen the majority of AT/RT kids as they are one of 3 places that specialize in treating pediatric cases.  There are really only 2 published trials on AT/RT - one with 22 kids which is the Dana Farber protocol from Mass General and another retrospective of around 40 kids out of St. Jude.  These are very, very poor sample sizes and don't give a great picture.  The doctors here see AT/RT a lot and have had several cancer free outcomes so they are giving us hope based on evidence.  Dr. B even chatted with us about the Dana Farber Protocol and the politics behind some of it.  He honestly believes that by us doing the radiation first we have a better shot at cure.  They put chemo first because of political reasons... as is often the case with science unfortunately!  In this you have to remember are kids who didn't get the cancer caught early, kids who literally die on the operating table, kids who die from high dose chemo side effects (shutting down of organs, infections from immune system being so low etc).  So basically there really is hope for our kiddo!  The best thing we can do for him at this point is to create a positive environment, healthy food and vitamins plus this treatment.  Oh and Thomas the Train too :).  We are looking for a plan after this too but will be based on the MRI after treatment.  WE are also going to meet with Dr. Guo in Chicago this weekend.

So to give you an idea of how the first day works - walk into building and then met with doctor to sign consent forms.  Then take Elan into big room you see in photos above and put him under anestigia.  Then they put a web mask on him so he doesn't move and line him completely up.  They also lay him in a molding cast. These two things are what they made when we went up a week ago.  THey put tabs on him as well so the beam is precisely where it needs to be.  Then they robotically move the cycoloton around and put in metal plates so as to have the beam go directly to the locations they want it to.  This first day they have a physicist on hand to look at all of it and put the plates into place for him.  She was so sweet - our age and masters from Vanderbilt - of course I had to ask, right?  There is a team of about 10 people in the room dedicated to Elan during the treatment - so much like the movies!  The first day took about 2 hrs since they did a dry run to line it all up and then did the treatment.  It should take only an hour going forward.

So Elan did FANTASTIC on the first day!  I nursed him right away and he did great as always.  Erik started to feed him and he pumped 4 tubes (8 oz) into him of his food pretty quickly.  I picked him up to get ready to leave and he threw it all up - and it went everywhere!  Poor baby!  The doctor and everyone else said very unlikely from radiation since so soon after and esp since we filled him up so fast.  Just slow it down!

So Elan was so great that we stopped at the local grocery store on the way home to load up on fresh fruits and veggies.  Fun place called the Bloomingfoods a local co-op.  We did find another place we will go to from now on that is also local and has organic since we are only staying 6 weeks and the coop is $90... still fun. 

So we arrived home and had this waiting at the door!  From Erik's friend at work - John Kopko and family!  50 roses!  So unexpected and lovely!  Thanks so much! 

So Erik and I really wanted to meet the friends here in town so we headed to the congregation Bible Study - even though almost 45 minutes late.  Everyone was so sweet.  They have had several other people come through for the Proton Center but not a baby Elan's age.  Everyone offered help and support which was so loving.  One of the brothers is a medical doctor teaching at the university to 1st and 2nd year med students and so really knowledgeable of what we are going through.  Another one does business with Dr. B so chatted with us about that.  Small town for sure!  We then headed to Krogers to get a few more basic things we couldn't get at Bloomingfoods... a cute photo

Chicago - Saturday - Meeting with Dr. Guo

So we woke up and of course didn't have enough time to get a proper breakfast.  SInce we stayed at a DoubleTree we didn't get a breakfast there but did have the cookies... so Erik decided a cookie would be the ideal breakfast for Finn... so he saw first hand what a bad idea that was! 

We made it to Dr. Guo with 10 extra minutes which I had hoped to stop for Finn but didn't get to.  Finn was quite a grump and in a Chinese waiting room non the less.  A perfect storm - Erik took him out and grabbed carrots out of the car and finally came back with a normal child. I had tube fed Elan earlier that am since I brought all his food for the weekend with us but gave him a carrot to chew while I filled out paperwork - worked in past but not smart.  I was at my wits end as had to fill out all sorts of papers that we should have apparently done online. 

We met with Dr. Guo and he was a stereotypical Chinese doctor in his 60's.  Told me all the vitamins I have been giving Elan not of any use and could be harming him a bit since having to work on getting out of his body as well as radiation not what he would recommend but up to us.  He then did a 2 second chat about how TCM is different and goes after the root and disease.  Not said much different than what I just typed.  He then gave us a perscripton for herbs etc and we left to get them at the front.  Of course they only had 14 days of the tea for his brain tumor so we have to call to get them but they gave us the tablets in the meantime.  Not as effective but better than nothing.  All I know is one of my dear friend's uncle had a brain tumor and had success with the guy.  Dr. Guo does have a good reputation and is an oncologist who trained at MD Anderson but not winning points on bedside manner with me.  HE was kind with the boys though so I shouldn't be so hard on him... He said Elan looked pale - i don't see that but said he is.  He did say Elan looks much better than many kids he sees.  He then proceeded to tell us that it doesn't matter what kind of cancer Elan has and he has a 70% success rate with brain tumors all around.  All in all it was about 20 minutes and I left with questions I wish I asked almost as soon as we hit the car.  Thankfully he knows we are out of town and we will be chatting on the phone as well as through email.  We have to send him the pathology report and the MRI written report as well.  We are quite sceptical but it won't hurt Elan or conflict with radiation so worth a shot.  Better odds than the 0 to 15% given by traditional doctors.  I am going to chat with the wife of the patient tomorrow to find out more about Dr. Guo.  I wish I had gotten my act together to call before we went but so hard with all we have on our plate.  He did say to let Elan eat whatever he wants - "Variety in Moderation" is his quote. That does make a lot of since to me.  I have had Elan on a VERY strict diet before our trip to Dubuque.  No wheat, barley, dairy, red meat, white anything and most importantly SUGAR which we will stick to for my sanity but will start giving him more carbs.  I do feel he is looking too scrawny no matter how many avocados I give him.

We then ate at a fun Hong Kong hip restaurant which was fun.  Elan threw up some of the meal and we found he tried to eat a hunk of meat without us knowing!  We had our bubble tea - avocado our fav.  Yummy!  We then headed to a hotel I booked in the waiting room near the university of Illinois Chicago - everything else way too pricey.  We parked the car and then took the L.  We headed downtown to the river and then walked to Millennium park and walked all around and then walked to Navy Pier. We then went on the taxi river boat to a restaurant on the river - fun!  After that we walked to the Magnificent Mile - wish I had thought of heading to Room & Board but didnt' think of it!  Oh well!  I love, love, love their stuff in magazines but haven't seen in person.  I really wanted to check out their rugs.  I will do another time.

us in the reflection in middle (look for stroller in front)

Boat ride - Finn's request and it was fun!

See how happy Finn is?  A fun taxi ride!

Restaurant on river

Finn loved all the boats.

Party kids - too funny!

Finn at the Gap

ELAN furs - see sign above.

Finn's request for these photos - notice the dragon in the flower bed.

Finn said he wanted to buy this outfit for "baby Emery" our friends Reeves and Elton's daughter - we explained too small even for Emery's little sister so we took a photo of it... here you go Emery :)

We then took the L back to the hotel and officially checked in.  I think it was the smallest room ever in us.  They were out of rooms with 2 beds and ours was a corner unit... literally there was a clip to hold the lid up for the toilet since there wasn't enough room for the seat to stay up - should have taken a picture!  Now Erik and I lived in Europe for 2 1/2 yrs so we have been in small rooms - just not expecting in US.

Chicago - Friday

We picked Finn up from camp and headed out to Chicago around 2 PM.  Finn has such a great time at camp - esp today since they had a fire truck!  The YMCA camp has worked out beautifully for us with Finn - a real answer to prayers. The Proton Beam Center has a relationship with the local YMCA.  We were told originally that all patients have free access to the center fitness equipment but it worked out to be even greater for us. We  were able to get Finn into camp for free!  It is all due to Angela there who is the person in charge of all camps and had a son treated at the Proton Beam center a little over 2 years ago for medula blasphoma. She is in charge of all the camps at the Y and said it this is her way to give back to the center.  She said whatever we want Finn to get into we will get him in - no matter if booked etc.  She knows from experience what we are going thorough and the need for siblings to have some type of structure during all of this.  She said they usually don't get siblings but children of patients and knows how hard it is for siblings.  She said she made sure that some of the funds earmarked for scholarships are used for the siblings and children from the Proton Center.   It has given us a feeling of a normal family life - well at least as normal as it can be.  We are able to drop Finn off around 9 AM and then head to Elan's appts which have been around 9:30.  This week will be a bit more tricky since Elan's appts are at 8:30 on MW and F. 

So Elan's first few treatments took a bit longer than what they will be going forward.  They have to get used to him and lining him up in the control center room (looks like NASA) they robotically take 4 X-Rays of him before giving him the radiation to make sure all is exact.  He also has stickers on his chest we are trying to keep on (so not happening) so they don't have to reapply.  So besides getting sedated he is getting X-Rays - not going to be concerned about the amount of radiation we get from going through airports anymore :)

So I made a reservation online during the drive with Priceline - should have done earlier but had other things going on so we ended up in Tinley Park.  This is where my dad grew up.  We wanted to arrange meeting up with my Aunt Sally and Uncle Art but hadn't gotten around to it.  So we called around 6 and Sally was able to meet up with us!  We met at Aurelio's pizza where Sally had worked for years as a waitress.  Not the same location but still fun.  SO great to be able to see her!  She even found a way to bring cool books for the boys - all in 30 minutes!  Elan loves them - they are the pull out kind and ELan loves 2 pages specifically that he wants to keep going back to.  Thanks Sally! Here are some pictures:

This is the house my dad grew up in... sorry only a night time photo but looked nice!