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.