What It Looks Like

Jonah & Dr. Volk.  Dr. Volk was a new neuro-surg fellow when our journey began - just a few weeks on the job.  Through the ups and downs and many months, Dr. Volk became a special friend and rock.  Dr. Volk was always there when we needed neuro-surg - for a consult, a crisis, a second opinion or a shunt reset.  He was also there, just to be there.  He stopped by to visit Jonah all the time, even when we didn't need neuro-surg.  The care and love he showed towards Jonah has forever touched our family.  Tomorrow his fellowship ends and he goes home to New Orleans.  We were so grateful for one last (unnecessary) visit with Dr. Volk.  We've already decided that if Jonah ever makes it to New Orleans, they'll meet up for beignets.

 Rock on!

Ashley-Anne and Jonah.  Ashley-Anne is our Lurie chaplain.  Rarely did we talk about spiritual things, but we made a great connection.  Ashley-Anne became a friend, a confidant, a support and an encouragement.  There was nothing "off limits" in our relationship - only space to be what was needed in the moment.  Although her job is mostly to be around in the bad, we were so thankful she got to be part of our good too.   

Dr. Lulla above & Katie below.  This is our team.  These are the faces that we would adopt and call family.  These are the faces that sat and laid out the hard facts and then turned to encourage and support us every step of the way.  They gave me leeway with some of my weird alternative therapies, they stood up for Jonah when we wanted the NG tube out, they schemed and planned how to get his central line out before vacation, they pushed and got creative when needed and always have had Jonah's best interest at heart.  These are faces that we love.  Not all patients are so lucky to have such an amazing team, but when we count our blessings on this journey - Dr. Lulla and Katie are right at the top.

Ringing the completion of treatment bell.  There's a poem below that people say as they ring the bell.  Everyone on the floor knows what it means when they hear the bell ring, so even if they don't know the patient, everyone cheers.  Because God wants us to know we don't celebrate alone, as it happened, 2 other cancer families we know, plus some additional staff we've worked with happened to be in the hallway while Jonah rang the bell.  Jonah's bell ringing did not go unnoticed or uncelebrated.

And we're done.  This is the day that we've prayed for from the very beginning.  By the grace of God, we have made it this far.  Maybe only I'll notice, but the left side of my face is swollen because my root canal didn't go so well and I've been dealing with some complications.  I wasn't keen to be in a picture in that condition - but hopefully I'll never have another chance to be in a treatment completion picture with one of my kids so I went for it.

Jonah seriously loves Dr. Volk - he crawled into his lap and discussed the finer points of his beard and was just general goofy.

Here lay the badges of Jonah's hard-fought battle.  I'm not sure the best way to display Jonah's Beads of Courage to maximize their impact, but here's the count - this is the battle fought:

275 in-patinet hospital stays

222 days of TPN or stem cell harvest

70 blood or platelet transfusions

59 tests (MRI, CT scan, EEG, EKG, ultrasound)

52 dressing changes

52 therapies (each hospital admission earned 3-5 therapy beads)

36 days of chemo

30 days of radiation

28 out-patient clinic visits (mostly earned while in-patient at RIC)

15 ER visits/ambulance rides

15 courses of antibiotics

14 round of fever or fever and neutropina

14 pokes (IV, injection or blood draw)

7 NG placements

7 times of mouth sores or mobility challenges (walker, wheelchair requirements)

6 surgies

4 central line placements/removals

2 PICU stays

2 time of hair loss

2 lumbar punctures

1 completion of radiation

1 stem cell transplant

1 Day 100 post stem-cell transplant

1 end of treatment

1 parent bead (this one is for Simon & I for walking this journey with Jonah)

I can't believe it's almost been a year - we're just a few weeks short of having been on this cancer journey for a whole year.  In some ways it's flown by, and in other ways it's been an eternity.  In some ways, everything has changed and in other ways, we're still pretty normal.  

They say a picture tells a thousand words - and the pictures above tell our story of what it looks like to get to today.  Relationships that go from purely clinical to something much deeper and harder to explain.  Markers of milestones to tell a story where words sometimes fail.

Yesterday we reviewed Jonah's first post-treatment MRI and were given the best news possible.  Jonah has a clean and stable MRI.  There are a few areas on his spine that at this point are believed to be scar tissue and in his brain, there is no sign of disease!  Every doctor that saw Jonah this week was amazed by his progress - ophthalmology said he doesn't need his glasses anymore, rehab said that we should give him less supportive AFOs because he's much more stable, oncology said everything looks great and that we can see them again in 3 months for the next scan and that in the meantime he can stop taking his appetite stimulant, neuro-surg was amazed at how strong he's getting.  All around it was great news!

God sometimes works in strange ways, and I didn't obsess over Jonah's MRI beforehand nearly as much as I thought I would.  This of course was ensured by having a root canal go terribly on Monday afternoon.  By Monday evening I was in so much pain I was barely functioning and by Tuesday I looked like 1/2 a chipmunk.  My life will be complete if I never have an experience like that again, but it did serve a great purpose in making it impossible for me to worry about anything other than my next dose of pain meds.  A distraction equal to the worry if was off-setting.  I am happy to report that today, with lots of antibiotics and steroids the swelling and pain are getting better daily.

A friend, who's been on this cancer journey longer than we have, said yesterday that, "the fight never ends, but what a wonderful moment in it".  Her thought captured our moment in an honest light.  We have nothing but celebration and thankfulness after yesterday, but our fight is not over.  I don't mean that in a pity-party kind of way - it's just factual.  For the next year, our lives will be governed, in some respect, by MRIs every 3 months.  Each time, the outcome will be just as important.  In the in-between times, we've got OT, PT & Speech therapy, appointments with the stem cell team, allergy, plastic surgery, audiology, ophthalmology and eventually endocrinology and neuro-psych plus normal life.  Yesterday we celebrated a wonderful moment in a fight that we hope to be in forever.  Our hearts and our minds were only filled with praise, thanksgiving and gratitude - there was no holding back - but this is not our finish line.

Thank you all for your prayers, your encouragement and your support.  To God be the glory, as this celebration was not by our might, or even the might of the medical community, but by our almighty God who has written celebration into our story.

Amy Murgatroyd Photography Strikes Again

Amy has been a dear friend for many years now and it has been such a joy to watch her interest in photograph grow into a passion and a profession.  We are always grateful benefactors of her talent and are honored to be on the receiving side of her lens.  

Last year Amy took regular, beautiful family pictures at the beach.  Little did we realize the weight those pictures would carry in the coming weeks and months.  As we met people in our new medical community, and they wanted to understand who Jonah was before diagnosis, we always turned to Amy's pictures - which had captured his joyful mischievous spirit.  When we felt like we'd been fighting for so long - and we wanted Jonah to remember what he was fighting for - we printed a family picture and brought it from hospital room to hospital room.  The picture served as an anchor to us, and our medical team, of why we were fighting so hard.  The pictures bore the weight of the possibility of being the last of their kind.  Who knew how important those pictures would be?

It was with overflowing hearts that we went back to Avalon this year, and in that same awed spirit of thankfulness, received Amy's talents again.  The thing is - this is real life - the night of the photo session we were swarmed with small biting bugs that apparently are very attracted to hair product.  The kids looked like they had thrown dirt in their hair - but it was just the bugs.  Prior to the photo session the kids were already a little cranky, so the bugs did not help at all.  I feel a low panic that all the pictures would be of us making ugly faces and scratching our heads with the kids bickering in the background.  And then we stepped away from the dunes, away from the bugs and we found a rhythm, but I wondered if it was too late.  In true fashion to the way God has created the world however; beauty is always there if you take the time to see.

Our deep prayer is that these pictures do not have to carry such a heavy burden.  That these pictures can reflect joy, happiness, gratitude and love - and that that will be all these pictures have to stand for.

Avalon in Style

40 is waiting for me around the corner, and to help get the celebration started, Simon turned Avalon girls night into a true celebration.  He provided transportation, libations, sustenance and dancing.  The cherished friends who came along provided laughter, joy and memories to last.

All the ladies ready to head out.  Jealous much of our stretch Hummer?  Based on the looks we got, most people on the Jersey Shore were.

Dancing is appropriate in all locations, and if there's going to be dancing anywhere, know that Laura is leading the charge.

A look inside the ride.

We started our event with a tour and tasting at a local New Jersey vineyard.  Our guide was informative even if it's weird to think of wine from Jersey.

Figuring out tasting options.

After our time at the winery, we went to Cape May for a fancy dinner in a private room.  Based on conversation around the table, our waiters probably walked away knowing more about permanent family planning options than their young ears ever wanted to know.

To cap the evening off, we went dancing.  Our normal "club" couldn't handle all of our energy and closed too early for us so we had to check a new spot out.  Of course, the spot we ended up at was geared more toward ladies celebrating their 21st birthday (their were a few), but we hope that we gave them something to aspire to down the road.  Happy birthday to me!

Unabashed Avalon

The story of our time in Avalon is always best illustrated and so with no further adieu........

Jonah and Heather at the beach.  Jonah's normally fair self, is even more photosensitive post treatment, so this year he wore a full body swim suit and had a special beach tent for his sand time.  We also had a special floating beach wheelchair to help us manage the sand with him.  Although the beach was generally too cold for Jonah, the few days he was there he had fun.

What is better than friends at the beach?

Jonah got the chance to play at the playground and tried the world's slowest slide.  Seriously, I know were a "safety first" world these days, and now especially do I appreciate a slower slide, but Jonah had to push himself down the slide to get to the bottom.  He had fun though, so that's all that matters.

One day it poured rain so we went to an airplane museum.  The kids had lots of fun running around getting in and out of planes, helicopters and trucks as well as posing in the open creative cutouts.  It was a great way to spend a rainy day.  Here's Julia the astronaut and Jonah the gunman.

Julia grabbed the broom on day and started running around saying, "I'm a witch".  Because Julia is such a joy, we couldn't help but laugh and take a picture.  In the background, Uncle Peter is teaching the masses a new board game.

This year, because we couldn't commit early enough, we ended up in a different house than our friends by ourselves.  This new house had a pool, which was revolutionary to our family.  The kids ended up wanting to spend more time in the pool than at the beach because the water was warmer and it was protected from the wind.  Luckily our friends would come to us for pool time.  Having Jonah's central line out for this trip was a blessing beyond words.  He took to the water like a fish - without fear or hesitation - and had the most fun I've seen him have in months.  The first time he got in the water, my eyes welled up with gratitude for the gift of the ability to be together this trip.

Anna and her pal, Lily at the Avalon Freeze.

Jonah, riding in style

A subset of the 26 children on the trip

When Noah's at the beach, he's in the water.  He was a hard one to catch on camera this year as he was always running around and making the most of his trip.

Julia & Liz.  Because of everything that this past year has brought, Liz and Margaret joined us in Avalon this year as extra hands.  We were so thankful for their help as it allowed us to be in more places at once and really connect with our friends.

Leslie & Jonah at Noah & Brenna's birthday party.

Every year we get a little smarter, and this year we moved Noah & Brenna's annual birthday part to the park.  This gave us much more space and the ability to have silly string!  

Cake time!

Most of the 2016 Avalon crew.  There were 22 adults and 26 kids in total and there was much fun and celebration!

No Avalon post is complete without an Avalon boat shot!