Perspective Shift

A pansy growing in the most unusual place - between the pavers on our back patio.  We don't have pansies in our landscaping, so I guess it seeded from a planter from last summer?  I'm not sure.  It is however a tangible reminder that strange things happen and that there can be beauty in the strange.

My beautiful pink/coral peonies have turned white and are slowly letting go of their petals.  Surrender can be simple and beautiful while tinged with sad.

The light always breaks through.  The dark does not win.  We may be walking in the the cloudiness now, but the light will break through.

There is no changing the hard, the scared the uncertainty or the sad that I have recently shared.  There is no way to wrangle time to make it pass faster.  There is nothing that we can do that will change the outcome of Jonah's next scan.  These are the hard things that are true.  These are the things that demand a response to "and then so what?".  And then so what if you can't make time go faster?  And then so what if you can't change the outcome of the scan?  How do we respond to things that are hard and true?

We have a choice.  We can struggle through these next weeks, consumed by fear and grief - letting sadness be our closest companion.  Would anyone fault us?  Doubtful.  Would it make those hard true things different?  No.  The other option is to take the time to sit with the hard feelings, recognize what we can control and then live.  Perhaps one of the greatest tragedies of the next few weeks would be if we failed to see the beauty, the joy, the love and the other small gifts that God places in each day because we were too consumed with sorrow.

This is my goal in the next few weeks - to live.  To find the laughter, the joy, the happiness.  To feel love and hope.  To see outside of myself to appreciate the beauty of spring, the sparkle in my children's eyes, the shrieks of happy play.  I have no doubt there will be moments of sadness or fear that break through, but I do not what to be consumed.  We do not know what the future will hold, none of us do, but I do not want to look back in regret, realizing that I missed the chance to live.

At these thoughts of living have been swirling in my head today, they have interspersed with an old hymn - I Surrender All, by Judson Wheeler Van Deventer, and so it is that with text that I leave you....

All to Jesus I surrender

All to Him I freely give

I will ever love and trust Him

In His presence daily live

All to Jesus I surrender

Humbly at His feet I bow

Worldly pleasures all forsaken

Take me, Jesus, take me now,

I surrender all

I surrender all

All to Thee my blessed Savior

I surrender all

All to Jesus I surrender

Make me Savior wholly thine

May Thy Holy Spirit fill me

May I know Thy power divine

I surrender all

I surrender all

All to Thee my blessed Savior

Prayer Time

Jonah started acupuncture a few weeks ago.  Although we are now in the "Harmony" room, we started in "Hope" and it is to hope that we now cling.

Pray for our family.  Pray for peace, for hope and for courage.  Pray that love prevails in all our interactions and that each member of the family know how much they are cherished - by each other and by God.  

Pray for Noah, that in these weeks of waiting he doesn't put all the pieces together and start to carry the worry of the future himself.  

Pray for Anna.  She has yet to actually process fully Jonah's diagnosis and treatment and the impact that has had on our family.  Pray for ability to be open as she processes and resilient in whatever our family's future holds.

Pray for Julia, as most of her wold revolves around Jonah.  I fear that if something were to happen to Jonah that a piece of Julia may cease to exist.  Pray that her spark of sunshine be bright and joy-filled yet also that she grows up knowing that she has space to feel hard feelings.

Ok, tumor board has meet - they have looked at Jonah's imaging and put their heads together to come up with the best recommendation they could.  We had some folks at CHOP (Children's in Philly) offer their input as well, and the collective best that they could come up with is to rescan in about 6 weeks and also do an LP (lumbar puncture) at that time.  The MRI will of course tell us if this new spot is getting bigger, staying the same or is gone.  The LP will tell us if there are any cancer cells in Jonah's spinal fluid.  This is a short timeframe to scan, so a stable scan and a negative LP aren't diagnostic, but a growing spot and/or a positive LP are.

Basically we know exactly what we knew last week and not much more.  We are looking at rescanning 5/23.

Although we basically have gained no new knowledge, hearing it all again made it feel worse.  Maybe it's because there was a little less optimism in Dr. Lulla's voice.  Maybe it's because when I asked him the unfair question of what he thought the likelihood of this being recurrence he said he was 60-70% sure it might be.  Maybe it's because our hearts and minds have had a little time to engage in what it will mean if it is recurrence.  Whatever the reason, for today we are heartbroken.

You may remember, from long ago, that if medulloblastoma returns after radiation, there is no cure.  There are a few treatments that prolong life, but the focus becomes quality of life, not preservation.  For children, like Jonah, who were originally diagnosed with metastatic medulloblastoma - if the cancer recurs, the median life expectancy is about 1 year from recurrence diagnosis.  To get there, some form of "salvage chemotherapy" would have to be started.  Although this type of chemo is not as intense as what Jonah originally endured - it would likely bring back some level of nausea & vomiting, hair loss and the risk of neutropenic fevers.  The goal would be to avoid hospital admissions, maintain the best quality of life as possible and then in the end, make death as dignified and painless as possible.

We still do not know that this spot on Jonah's spine is recurrent disease.  There is still a chance that there is some other unknown, uncommon explanation for it.  But, even as we hold onto that hope, we are having to prepare ourselves for the chance that Jonah's story may be entering his final chapters, and therein lies our heartbreak.

Through this journey, many people have commented on the strength of faith that we have.  God has been so faithful to showing up in our lives in big and small ways over the last almost 2 years.  It is as a testament to God's faithfulness that I want to be able to pray, "Thy will be done", but I can't.  I am afraid that in a year that has already seen my dad die, my grandmother die, my mom be put into a nursing home and the selling her house that there might be even more hard ahead and right now I cannot willingly submit to it.  I am tired of the hard and want God's will to be certain healing.

Please join us in prayer in the next few weeks.  The big prayers are outlined below, but cancer changes everything for everyone, and so there are specific prayers listed above as well.

* Pray that our 5/23 MRI is clear.  Pray that the medical team is left scratching their heads as to what the spot was and we can proclaim the healing power of Christ.

* Pray for the days leading up to 5/23 that we are able to live with hearts wide open, without fear and anxiety robbing us of the joy of each day.

* Pray for Jonah - that he keeps his silly, loving, open, warm spirit.  Pray that there is no change to his health or strength and that he doesn't feel singled out in any way as we encourage him to keep living big.

* Pray for my heart.  We don't know the outcome yet, but there has already been so much grief and sadness this year for my family.  Pray for strength to find hope and seek the goodness of God even on the darkest days.  I'm not a great waiter and expect this to be a long few weeks.

* Pray for me, as I am slated to speak at a pediatric cancer fundraiser gala 5/20 (let me know if you're interested in attending and I can hook you up with the info), and although I can write the very hard things, saying them out loud is much harder.


As a side note - as we have nothing definitive to tell our children, we will not be saying anything to them right now.  Please do not discuss this with our children or when they are around.  They are smart kids, and with too many sorrow-filled glances and hushed conversations they will piece together that something is not right.  We do not what them to face undue worry with information that is not certain.  Thank you in advance for helping us in that effort.

Theatrical Debut

Anna, our little red fairy

For anyone who really knows Anna, you know that this is really how she felt about having to wear such a frilly costume.  It was not her favorite.

Already she's using her wand to scratch her back because she finds the whole thing so itchy.  At least the wand has many purposes.

It's official - she's in the playbill!

Anna after her show as the director addressed the audience.  Such feigned irritation.  We know that she was glad we were there to document her rise to fame.

All smiles after the show, even though she didn't seem to want the flowers daddy brought her.

Anna and her fairy friends.

While we wait to hear news from the tumor board - I don't want to loose sight of the other things happening in life that are worth celebrating.  One of those things is that Anna made her theatrical debut in Peter Pan Jr on Friday through the Palatine Park District.  After weeks and weeks of practice, Anna burst onto the stage as both fairy and mermaid.  These are, of course, not the roles that Anna would have chosen, but she was a good sport about it.

Anna did a great job, as did her friends, and we are so very proud of her.  We are hopeful that this will be the first of many performances in her future, but she's on the fence right now.  She made such a lovely fairy, we can only imagine what she'd do with a role that she actually chose.  Whatever it is that Anna decides to do in the future, we know that she'll be great, but we can't help but hope to see her on the stage again.

Levity

Jonah had an eye surgery to help shut his right eye a little more to help him be able to fully close his eye.  The procedure went well and the doctor is happy with it, but it is a bit more pronounced that we'd expected.  Jonah is pretty sensitive about how his eye looks right now saying that he looks "scary" and "like Frankenstein".  Because of that, this is one of those times where saying less is saying more.  Please bear that in mind, and help your kids do the same, in as much as possible.  We know that kids always have questions, we're just trying to "get in front of them" as to not make Jonah feel more sensitive about it.  Thanks for your help!

Jonah and the cows.  There is the ever faithful Cowie and Lulla the Giant Cow.  Middle cow, formerly known as Fat Cowie, will now be known at Katie the Cow after our favorite APN, Katie.

Jonah and his 2 Katies.  A visit to the clinic wouldn't be complete without a picture with Katie.

Fun times with this new Facebook photo thing.  Things are always better together.

Seriously, I can't make this stuff up.  Last night Julia started complaining about her eye hurting.  I thought it was in sympathetic solidarity with Jonah since his eye was bothering him postoperatively.  This morning, it turns out it was more than that.  Julia woke up with a red, swollen, droopy eye.  The pediatrician thinks it might be a stye, but it's not completely formed yet.  I think it might her unexplained sweet connection with Jonah causing her to manifest his symptoms as it's the same eye.  Who knows, but we're doing eye ointment for both kids now.

More fun with Facebook filters.  Today was a day filled with waiting as we had 6 doctors appointments.  

Jonah travels with a posse that's got his back.  Missing from the picture are Lulla the Giant Cow, Baby Kyle the Walrus and this random Troll doll one of the nurses gave him.

Sometimes you need a little levity in life, and today, the day of results and follow up with 6 doctors appointments was one of those days.  So to kick things off, here's a joke for you.....

What do sharks like to eat with their peanut butter?

Jelly Fish!!!

Now for the updates.  I'm going to start with the good and easy first.  The good and easy is that Jonah's rehab doctor is amazed with how well Jonah's physical recovery is going.  He's getting so much stronger, with improved range and balance that we've made a change to his leg supports (AFOs) to allow them to articulate at the ankle.  This is a great step for Jonah's mobility.  The other good and easy is that the endoscopy showed no signs of persistent eosinophilic esophagitis.  That means that outside of avoiding anaphylactic food allergies, Jonah's diet is wide open.   

Now on to moderate and easy update.  The fluid from Jonah's December ear infection has finally cleared so we were able to get an accurate hearing test.  The test revealed that there continues to be mild worsening to Jonah's hearing.  Although this isn't great news, it is easily corrected with an adjustment to his hearing aides.

And now for the unclear and hard.  Jonah's MRI revealed a new spot on his lower spine.  The spot is weird and no one is sure what it is.  It does not present like a typical recurrence and so the radiologist is not overly concerned.  In the world of oncology though, new spots make everyone uneasy and so our neuro-oncologist and our neurosurgeon are more on edge.  They honestly have no idea what the spot is.  There is a lot we have to weigh, but for now, the biggest is how long we want to wait before our next MRI.  The team feels confident that if this is recurrence it will be clear by 12 weeks.  That feels like a long time to wait and so we're looking at a shorter window of 6-8 weeks.  There is a chance that in the shorter window the spot either disappear or grow - giving us the information we are looking for, but there is a reasonable chance that it will look the same and we will need to rescan in another 6 weeks.  

This is scary.  This is hard.  This feels like the beginning of the chapter we never wanted to open.  If this is recurrence, there is no cure.  There are various treatment options that can extend life with decent quality, but there is no cure.  Even if the spot turns out to be nothing, standing on this precipice is terrifying, and we are likely to be standing here for the next 6-12 weeks at minimum.  Yesterday I said, "Never does your faith grow so much as when you have regular intervals of waiting and trusting with a piece of your heart".  Yesterday I meant waiting for 24 hours.  Today I mean waiting for 6-12 weeks or longer.  

I suspect that in the coming weeks there are going to be moments where we are overwhelmed by the scary, by the hard, by the sad.  If we could ask you to pray with us and for us in the coming weeks that would mean a world of support.  Specifically, if you would pray:

* That this weird spot just go away.  Pray that Jonah's body is able to reabsorb it into oblivion.

*For wisdom as we make decisions on how long to wait to scan, to balance not going crazy waiting for more information with waiting long enough to get more information.

* That Jonah's recovery continue to be so strong and successful.  Everyday he's a little stronger, with better balance and flexibility.  

*For the today - for the time that our family is guaranteed.  That we are wise with our time together - maximizing it not because we fear the end but because we love the together.

Since Jonah finished treatment in May 2016, I've often referred to each day as a gift.  Knowing that today was never a guarantee and that God has filled it with goodness, if I stop to look.  I'm so grateful that I've slowed down to have eyes to see that goodness.  No matter how this goes - we will always have the last 11 months of memory making, laughter and love - and tonight it seems all the sweeter.

Just Life

The day Jonah dressed himself in an orange shirt, a white shirt, a yellow shirt and a Spiderman hoodie with blue fleece pants, shamrock socks and a shamrock necklace.  I guess that's one way to put some weight on him.

Crazy hair day.  I am in a season of looking back.  A year ago, any hair would have been crazy hair day.  Jonah was completely smooth bald and we weren't sure what his hair would come back like.  To have a paintbrush ponytail is a type of crazy hair we can all live with!

Now that Jonah is almost a year out of treatment, we look to alternative therapies that will hopefully continue to help him stay healthy and make him stronger and stronger.  One of our newest explorations has been acupuncture.  It's one of those things that you don't know if it'll work till you try, so we're trying it.  Jonah is tolerating it well, but did insist that Cowie also receive therapy.  I'm not sure that sticking more needles in Cowie is the right plan for his longevity, but luckily they're tiny needles.

                                                 
Anna, our blooming electrical engineer.  Simon jokingly told her to change to doorbell this weekend.  When she came back asking what to do about all the wires, he decided he should at least be supervising her efforts.  If you come to our backdoor, take a moment to admire our sweet new doorbell.

Last year the Teddy Bear Picnic was kind of like Jonah's homecoming.  He was almost done with treatment - still at Marion Joy, but the end was in sight.  The day of the party was rough - right before leaving the hospital to come to the party, Jonah threw up and we were all anxious about his attending.  His immune system was low and he was wheeling into a preschool party.  This was his first big social outing, returning so very different than when they had last seen him - bald, in a wheelchair, facial palsy.  And he was welcomed back with open arms, embraced, welcomed and well loved.  This year it was all the sweeter to arrive all together without worry of germs, without Jonah's presence being remarkable.  Blessing upon blessing heaped into everyday.  Thank you God.

The time has come again where our new normal life is put on hold while we wait with baited breath for the reprieve of stable scan results.  Jonah has his next MRI right after Easter, Tuesday, April 18th. This is going to be a long day for our guy, as he's not only having his MRI, but also an upper endoscopy to check the status of his eosinophilic esophagitis and a tarsorrhaphy (eye lid closure surgery to help get better closure with his right eye).  Three procedures for three rare conditions all rolled into one amazing little boy.

If we could ask for your prayers on the 18th for all of these procedures, for stable results from the MRI and endoscopy and for a successful eye surgery.  In the meantime, we will continue to enjoy the blessing upon blessing heaped into everyday as winter turns into spring.

Spring Break

Grandma and the grandkids

Grandma, the kids and the grandkids

Noah and Anna hamming it up

Anna wanted to try out a contemplative pose

The Garden of the Gods - the way the light plays against the rocks it's hard to not appreciate the beauty

Julia the super strong - holding up "balance rock"

Anna had a case of the giggles on our Royal Gorge train ride

To counteract her giggles, Anna tried to be very serious, which only encouraged Noah to ham it up instead

Noah and Grandma enjoying a beautiful day in the Royal Gorge

Noah was playing photographer and the girls were all too happy to oblige

Anna and Uncle Scott at Dinosaur Ridge

Julia wanted to have one final picture with Grandpa

This was the setting of our final farewells to dad.  This service was honoring to his memory as a serviceman, a healthcare provider and a father.

Noah commandeered one of Uncle Scott's friend - David, and they shared many laughs one afternoon

Anna and Aunt Brenda - this is basically how they always look

Something about the altitude brings out the strangest faces in people

Daddy couldn't help but enjoy this kind of snuggle

This is currently my favorite picture of Jonah that we have.  He looks so handsome!

Mixed into our Colorado visit was a trip to the ER.  Elevation aggravated dehydration looks a lot like a shunt malfunction, and since we'd rather be safe than sorry....So thankful that all of the imaging was normal and that a bolus of fluid seemed to get him back on track.

We had an unplanned brunch date with my Aunt & Uncle from Montana.  They had been vacationing in Arizona and stopped on their way through Colorado for a bite.  

Another spring break, another trip to Colorado.  There's nothing like loading the van up with 4 kids at 4:00 in the morning for a 13 hour drive in the rain to make memories that will stick with everyone forever.  Luckily, our kids are pretty versed road trip-ers and other than long, the drive was pretty uneventful.  

We referred to this trip as our staycation in Colorado.  We knew we wouldn't be doing anything remarkably fun or typically Colorado, but we did expect to get some good family time in as well as pay final respects to my dad.  Our trip was a success as we were able to accomplish both and then some.  We spent a few days with my mom, we visited Garden of the God, the Royal Gorge and Dinosaur Ridge.  We visited Savory Spice Shop, a great spice shop in Colorado Springs owned by the parents of one of Simon's good college friend.  I reconnected with a high school friend, we had a pizza playdate with some good friends close to Denver and we had breakfast with an aunt & uncle my kids have never met.  We had a visit to a local emergency room because Jonah was extremely lethargic and we were worried about his shunt functionality, but it turned out he was just dehydrated.  And we were able to pay our final respects to my dad in with a military honors service that would have made him proud.  

There was no skiing, snowmobiling, cute mountain towns or other traditional Colorado fun, but all in all, we made some lasting memories, we built into relationships and we avoided major medical complications, so it was a good spring break.