Get'ing It Done

Things are well under way with Jonah's proton treatments and off to a decent start.  There have been a few rounds of throwing up and Jonah's appetite still leaves a lot of room for improvement, but he's in good spirits and continuing to make good efforts in therapy.  To that end, it looks like our lifestyle of hospital living is almost over as Jonah should be discharged at the end of this week.  During the week he will stay at a Ronald McDonald House close to the Proton Center, but on the weekends he's going to get to come home!  

Coming home will be complicated.  We haven't been a family all together since July and everyone is different for that.  There will be a lot of relearning how to be, but we will have the chance to be.  The prospect is exciting and scary and overwhelming and filled with promise and shadowed with fear.  It's just complicated.

Our friend, Kelly, who ran the Boston Marathon this week to help raise money for cancer research built on my non-runner-self analogy from a few posts ago with runner eyes.  She took her runners experience and applied it to our situation in a way that as a non-runner I didn't fully get.  She's spot on though, she understands the hard that is ahead having pushed through her own hard during the marathon.  When she hit her wall at mile 18, this is what she learned and was able to share.  Here are her words, filled with truth:

"Not only have the past few months been very difficult, but it's going to get a whole lot harder. And panic sets in. You have your people cheering you on, but it's too much. All you can do is put one foot in front of the other and do your best to get through while not looking up or forward. Exhausted, scared, anxious, sad, your body takes over and everything hurts and seems way too overwhelming. For a long time. And all you can think of is being finished. So slowly but surely, you put one foot in front of the other and get to the LONG awaited finish line, expecting things to be better. But it's not. You still hurt, and although you still have the crowds to cheer you on, all you want is for things to be better faster. And though the run is over, the healing takes a while. I imagine finishing radiation will be amazing, but still very scary. Coming home to the unknown in your new normal will take time. And that sucks. But coming home will be so so good. You will all be together under one roof, and while it still hurts A LOT, you will be home. Together.........The last mile is the hardest, but you are here. Almost finished. Almost home"

Forgive us if in this season we seem even less present than we have been.  We are in our last mile of treatment - head down - one foot in front of the other, preparing for the post-race healing.  And I guess that's where our analogy breaks down.  After the marathon is over, the marathon is over.  In this case, after treatment is over there will be regular MRIs, endocrinologists, neuropsychologists, audiologists, opthamologists, rehab doctors and always the risk of relapse.  But for today, we run the hardest mile preparing for a long awaited homecoming.

Jonah decided that instead of counting up to 30, he'd rather count down to know how many radiation treatments he has left.  As he started, he was all thumbs up.

Once it was clear that the countdown was going to stick, we needed to upgrade our signs a bit.  Here Jonah is posing with 2 of his favorite anesthesia nurses, Lauren and Kerri, that he's growing to love and look forward to seeing everyday.

This is our friend Kelly who ran the Boston Marathon to raise money for cancer research through Dana Farber.  She hit a wall around mile 18, but pushed through and gained some valuable insight that she shared with me.

Day 21, where we are today.  Chipping away, get'ing it done.  Jonah is loving his time at the proton center and was actually sad today that he couldn't have a second round of sleepy medicine and do another treatment.  

And then this happened.  Apparently household disasters don't take a holiday during cancer treatment.  Our hot water tank got a little hole in it that caused it to spew hot water all over the utility room soaking almost everything and leaking through to the carpet in the main room.  Fun times for sure!  It is a reminder that life is bigger that what is right in front of you.

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.

Easter 2016

Better late than never right?  Because of lots of visitors, and therefore choosing people instead of technology, and prepping for our move out west (western IL for radiation) I've hardly opened my computer in the last few weeks.  Here are a few belated quick pics from a great Easter celebration at home.

This was the first home visit Jonah had where we used his walker instead of his wheelchair.  Of course, his favorite method of travel was by holding hands and walking around the house.

Julia found a stethoscope and wore it around all morning to compliment her necklace.  Both girls express interest in becoming doctors when they grow up (Julia wants to specifically be a hospital doctor), so it only makes sense that Julia would be making sure the doctor accessories work for her.

Because we're all learning to manage different levels of mobility, we did the Easter egg hunt inside this year.  Color-coded eggs ensured that everyone was a winner this year.

Although Liz may no longer be speaking to me after this picture is posted, this was one of the better pictures of Noah from the day.  I could have posted the ones of Noah doing his ninja poses, but then he wouldn't be speaking to me, so I've got to pick my poison.  

Home - this is the way we're supposed to be.  Although there's a foreign element to all being home together these days, we all love the togetherness of these days.

This is perhaps a more "real" picture to how things go when we're all home together.  I'd like to blame the crazy on Uncle Scott, but you can quickly note that he's the most "normal" of the bunch!

Because getting Liz into pictures with us is a bit like pulling teeth, this could be her first cameo in a family photo.  She crossed the threshold of being allowed into family photos a long time ago though.  Without her an mum, we wouldn't be able to survive!