Where Are We Now?

Simon recently took the girls to a daddy/daughter dance.  They were over the moon excited and had a fantastic time together.  The girls ensembles were selected by Anna without any prompting.  If you know Anna, you know it's a big deal that she picked out a dress and then a bigger deal that she went on to pick a necklace and bracelet.  I'm not sure we'll convince her to wear any of it again, but she did a nice job on their outfits.

Noah recently did a presentation to the third grade classes at his school about cancer and Jonah.  We haven't done a lot of "pushing in" to the classrooms, but, Noah was starting to have some uncomfortable conversations with classmates about Jonah's disease in which classmates clearly were misinformed.  Noah was really excited to be able to present and did a great job both educating his peers as well as giving them a glimpse of what our life is like right now.

Now that Jonah is back at RIC, we hope to take advantage of more day passes.  We're off to a good start - his first weekend at RIC involved him being home most of Saturday.  Anna,the ever doting sister, was especially delighted to have him home.

Something must be in the RIC water.  As soon as we returned, we found out that 3 people we regularly chatted with were leaving.  First we learned that one of our first nurses on the floor "B" was leaving.  Then we found out the dietician was leaving.  Then we found out that Mrs. T was leaving too!  Mrs. T often would help transport Jonah between RIC & Lurie for appointments.  She is also the one who surprised him with "Lovie" (giant dog pillow pet) at Christmas after their conversation about Jonah wanting a big dog but not being able to have one.  These smiling faces will be missed!


We've made it to RIC and are nicely settled in.  Jonah is doing good work at therapy and impressing everyone by how little backslide he had while away for stem cell transplant.  Watching him work in therapy continues to give us hope for the things he may be able to do in the future.

In terms of things coming up, outside of focusing on therapy, Jonah has another progression MRI & LP on Monday (3/14).  These tests will tell us how effective the conditioning chemo associated with the stem cell rescue was in further reducing the disease load.  Going into stem cell, there were a few spots that were clearly tumors still and although they were reduced in size from diagnosis, they were still there.  We covet your prayers in the results of these tests and for our wisdom to know where to go next.  We will be having a meeting on Wednesday (3/16) with our oncology team and the radiation oncologist to determine if radiation is the right next step.

Throughout Jonah's treatment, radiation has scared me the most.  Although the medical community cannot quantify the effect, they are certain that radiation under the age of 8 (10 depending on where you look) will result in a loss of IQ points to the extent that future independent living may become difficult. That is of course in addition to the short term effects of short term memory issues, possible mouth sores (again), skin discoloration, skin burns and overwhelming fatigue just to name a few.  I don't want to do radiation.  I want to be done with treatment.  I feel like we've put Jonah through so much already, I want to be done.  The team wants to be done too.  We don't want to do radiation.  The thing is, radiation is our best chance of remission.  Medulloblastoma is most responsive to radiation.  With that fact firmly established, how can we not do radiation?  How can we risk a recurrence that may rob us of our chance to try?  Radiation isn't a guarantee that the cancer won't be back, but if that does happen, we will know that we tried everything.

I've been stalling on this update, hoping to have a nice bow to tie everything up in, but I can't get there.  Instead I find that my prayers are mostly "Please God."  Please protect Jonah's body from the long term side effects of treatment.  Please put Jonah into remission forever.  Please give us wisdom to navigate this.  Please let Jonah continue to make therapeutic gains.  Please let Jonah walk again as his primary mode of transportation.  Please let Jonah be able to go to school in the fall and have it not be too hard.  Please let us take Jonah on vacation again.  Please let us bring Jonah home and find a new normal.  Please help us to not always be afraid - help us to not look at every headache, stomach problem, every ache and pain in our children as something more than it is.  Please use Jonah's story to bring your Light into the world, to bring people to consider knowing you - but please don't let that impact cost us Jonah's walk on earth.  Please God, please God,  please God.

And again, when I cannot find the words, there is a song - a song that speaks to my heart today - that allows me space to process when I can't find the words.  Right now I have 2 songs (lyrics to both are below).  I either play them repeatedly, soaking in the words, crying, grappling with our circumstances and working out with God how to step forward - or I take a break from feeling and listen to Taylor Swift.

The first song is Casting Crowns' "Just Be Held".  Casting Crowns also is responsible for "Praise You in This Storm", which is another song that often plays in my processing loop.  "Praise You in This Storm" was written after the lead singer watched a family lose their daughter to cancer.  Their walk through their storm inspired the song.  "Just Be Held" is the God's response to those walking through a storm.  The first words of the song feel like a pronouncement of truth - " Hold it all together, everybody needs you strong.  But life hits you out of nowhere, and barely leaves you holding on."  Even after all this time, I'm sometimes startled that this Jonah's cancer is real and I have no idea how we've held on this long.  Then, in the chorus, there is a line that fills me with questions, "Your world's not falling apart, it's falling into place."  Really?  Not falling apart but into place?  Right, this totally seems like a good plan.  And then right on its heels, "If your eyes are on the storm, you'll wonder if I love you still, but if your eyes are on the cross, you'll know I always have and I always will."  Oh yeah.  God loved me so much, Jonah so much, that He sent His son to die on the cross for us.  That kind of love will "paint beauty with the ashes".

The second song is Danny Gokey's "Tell Your Heart to Beat Again".  This song also has it's origins in the medical world.  A pastor was observing a heart surgery, and after the heart was repaired the medical team made their attempts to restart the heart without success.  The surgeon then knelt by the patient's head and told her, "We have repaired your heart, if you can hear me, you need to tell it to start beating again" and with that, her heart started beating.  This song also lays my heart out from the beginning, "You're shattered, like you've never been before.  The life you knew, in a thousand pieces on the floor, and words fall short in times like these - when this world drives you to your knees - you think you're never gonna get back to the you that used to be".  Shattered?  Yes.  The life we knew before?  Certainly in a thousand pieces, never to be the same again.  Get back to the you I used to be?  Doubtful - I am forever changed and I don't really know what that means right now.  "Let every heartbreak, and every scar be a picture that reminds you Who has carried you this far, 'cause love sees farther than you ever could - In this moment heaven's working everything for your good". Again, the love of Christ working through every heartbreak, every scar - it's not too hard, too scary, too sad, too overwhelming for love.  "Cause your story's far from over - and your journey's just begun".  Life is not a destination, but a journey, and as long as we have breath to breath we have life to live no matter the circumstances.

These words - these songs, don't tie everything up in a pretty bow either, but they give me a framework to hang my heart on.  A place to lay my fears, confusion, anger, sadness and hope out to examine with God so that I can find my way through.  And it is with that that I leave you.  A lot of unresolved emotions swirling in the face of more test results and hard decisions.  It may not be pretty, but it is honest.  And in that honesty, I fully trust that God will meet us again and again, guiding our path, preparing our hearts for tomorrow.  It won't be easy, I think that much is clear, but we won't be alone.
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"Just Be Held"

                                                                   Hold it all together

Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who won't let go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held (stop holding on and just be held)
Just be held, just be held, just be held, just be held

"Tell Your Heart to Beat Again"

You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
Cause your story's far from over
And your journey's just begun

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again
Your heart to beat again
Beat again

Oh, so tell your heart to beat again