A New Address

They say that bad teeth are hereditary.  Wonder who they get it from?

In the midst of our crazy, Liz made sure that the kids had a little bit of normal.  The older 2 really got into egg dyeing this year!

The problem with my selfie kicks is that I picks with all the kids in the same day.  This particular series does highlight for me that Anna does bear more of a resemblance to me that I tend to think.

I had to force Noah to stop playing basketball to quickly take a pic with me before I went back to a very aggressive guarding of him.  He's a pretty good ball player and I'm not, so I've got to pull out the stops with him.

Uncle Scott and Jonah just chilling in the VIP lounge of night club that we thought was a restaurant.  When you've got a kid in a wheelchair and only hightop tables, the staff is very accommodating!

Auntie Leslie came into town too.  No trip is complete without a snuggle from Kyle.

Jonah at what we hope is his last regular clinic visit at Lurie.  They gave him another unit of blood, and fingers are crossed that he won't need anymore during radiation.  Margaret (aka The Rollo Fairy) again made sure that we had a comfortable and laughter filled stay, and that we all learned a little bit about parasites.

Our trip to Avalon this summer is not confirmed, but is still possible.  The one downside to going to Avalon will be that Julia will miss her first dance recital.  They got their costumes this week.   In case this is her only chance to wear it officially, I though I'd share (she's the red circle).

Jonah has loved dog therapy at RIC.  This is perhaps his favorite night of the week.  He says that Dude is his favorite, but given how much he enjoys himself, I think they all might be his favorite.  This is Chuck.

On our last weekend in the city, we went to the Museum of Science and Industry again - buying a membership here has been the best money spent ever!  Based on varying theatrical skills, the kids are pretending to be sucked into an airplane engine/they're just humoring me taking an "action" shot.

And so begins another chapter - we have left our high price city "apartments" (Lurie, RIC & Ronald McDonald House) behind for cushier suburban digs.  We are now at Marianjoy in Wheaton for rehab and at the Proton Center in Warrenville for treatments - total 'burbs that are basically as far away from home as the city, just in a different direction.

A few days into it, Jonah seems to be adjusting well.  The pediatric rehab floor is much smaller here (4 private rooms vs 20 shared rooms and 4 private room), but the staff all seem very nice.  There are a few extra activities outside of therapy that Jonah can participate in and he has already joined the older patients for Yahtzee night (after Jonah, the next youngest patient was probably in their 50s) and a dog show.  After 1 radiation treatment, things seem to be off to a good start, although it's hard to draw conclusions off of 1 data point.

Right now we are focused on a lot of things - radiation, ongoing rehab and eating.  Jonah's central line, and the weekly dressing changes that come with it, are the single greatest source of stress for him.  Right now we have the central line for his daily anesthesia and his TPN (IV nutritional support). As Jonah is doing much better overall, our goal is to transition his nutritional support to eating only and get rid of the TPN.  The goal would be that when radiation is over we would take out his central line and all of his stress.  In addition to praying for overall protection during treatment and healing, please consider praying that Jonah eat and eat and eat and that he can get rid of TPN safely.

Jonah is paired with a lady who is running the Chicago marathon so that he can encourage her and she can encourage him (Our friend, Kelly, is also running the Boston Marathon this year in Jonah's honor and is raising money for cancer research.  It's not too late to contribute the cause if you'd like at  http://www.runDFMC.org/2016/kellylorenz).  Tonight I drew the analogy for her that this is our Heartbreak Hill.  Heartbreak Hill got it's name from its course placement in the Boston Marathon.  It's at the 20 mile mark - after runners have run and run - when runners are tired and digging deep and still thinking that walking or stopping sounds good.  The thing is, once Heartbreak Hill is over, they're home free - there are still miles to run, but the biggest hurdle, the most talked about segment, is over.  And so up Heartbreak Hill we go - even though we are tired, even though we have slept 260 nights in the hospital, spent 71.23% of a year in treatment.  Radiation has been the scariest part of this journey for us, and here we are, at the base of the hill.  We don't know how Jonah will respond in the short or long term, but as we have all along, we put one foot in front of the other and run the path set before us.  Unlike the Boston Marathon, we don't know what our finish line looks like or what lies ahead, but we have faith that on the other side of our Heartbreak Hill there will be a season that will still be hard, but that we will cross our finish line too, whatever it looks like.