Alaska By Sea

After a week of exploring Alaska by land, it was time to explore Alaska by sea.  It was a perfect combination to really appreciate the beauty of a state that boasts being 2 1/2 times as big as Texas.

Sometimes, after a hard journey you are blessed with special, incredible opportunities.  One such example was our invitation to view the Hubbard Glacier from the bridge of the ship.  Jonah was also made honorary 5 strip captain with a custom made uniform and all.  It was such a special and touching experience for our whole family.

In Juneau, the Alaskan state capital.

Given my awesomeness with motion related things, the sea plane outing probably wasn't my best suggestion, but we did get so see some amazing sights.  Noah road as co-pilot while the rest of us took in the views from the back.  This adventure induced what may have been the best naps Anna, Jonah and Julia took all trip.

In Skagway, we took the White Pass & Yukon Route Railway - a train that made later passage for the gold rush easier.  It was another time that we found ourselves wishing for our yet to arrive selfie stick.

In addition to the bridge tour, we were able to have a private dinner with the captain of the ship, a private galley tour, special desserts every night, a Minion themed party in the kids club inspired by Jonah's love of Minions and many special trinket gifts in our rooms.  Most of these marvelously special things were coordinated by Jackie and Chris, who because fast friends with the kids.

Captain Jonah at your service.  

Julia with the actual captain of our ship, giving her hand a navigation.

Jonah, offering insight into the ice field ahead.  He was able to help navigate safe passage and we only had a minor brush with an iceberg.

I told you there'd be more dandelions.  Check this thing out - it seriously is almost as tall as Julia!  She loved it!

Noah, panning for gold in Skagway.  He managed to find about $10 worth of gold in his pan, but the sight wasn't interested in actually buying it back from him so it's a keepsake from the trip now.  Anyone looking to buy gold?

Even on this epic trip, Jonah and Julia stay connected.  Jonah bonked his right eye, crawling around on the floor, and so at breakfast that morning, Julia had to bang her right eye into the corner of a table to try and match.  Meanwhile, in the background, Anna loves the binoculars.

Fishing in Icy Strait.  Ok, really just taking advantage of some props, but still....

Anna really found her face of many expressions this trip and wasn't afraid to ham it up.  Here is but a sampling of her expressions.  Smelly fish anyone?

Check out how long that dandelion stem is!  Anna can't believe it.

That was't supposed to bend that way.  Yikes!

No really, look at how long the stem is.  Have you ever seen a dandelion so tall?

During our galley tour, we also got to spend some time with Wendell - the head pastry chef, who created special desserts for us every night.  He we certainly a kid favorite for his talents.

Alaska By Land

This is going to be our summer of grand adventure.  We are memory-making like never before as a testament and celebration to the joy that fills our lives.  We are living once in a lifetime experiences and cherishing the moments.

The kids tackle a bear in Denali National Park.

Family selfie time - this was the picture that made us decide to finally buy a selfie stick.  World, stay tuned!

Our lovely friends, the Riddles, gave us matching vacations shirts and we were only too happy to debut them in Girdwood Alaska.

Walking through an old avalanche site on the Alyeska resort.  We bought a jogging stroller to use for Jonah instead of his wheelchair and it was the best decision yet as gave us a lot of flexibility.

Speaking of flexibility, while in Seward, Julia decided to practice some of her ballet stretches.

Julia managed to take this sweet photo booth picture all on her own at the Alaska SeaLife Center in Seward, Alaska.

Noah, sporting his Palatine Penguins Lacrosse sweatshirt on the train ride up from Anchorage to Denali.  Go Penguins!

Julia isn't the biggest fan of dogs, but when they're 3 days old they don't seem that bad.  We toured Happy Trails, which is run by Martin, a 4 time winner of the Alaskan Iditarod race, and these are his latest batch of puppies.

Jonah loves dogs no matter how big or small - these tiny puppies were a huge hit.

Anna really loved the puppies.  One of them that she was snuggling even crawled up her chest and tried to get into the sleeve of her jacket.  It was so sweet.

Julia loves dandelions, and in Alaska there were tons of dandelions!

Julia looking reflective while rubbing dandelion all over her nose.

Jonah was happy to horde Julia's castoff dandelions.

Anna wasn't as interested in the dandelions, but she was more than willing to help push Jonah so that he could enjoy the journey and horde dandelions.

Because of our mobility constraints, the kids are a bit deconditioned and were happy to take a photo break on our hike in Girdwoood near Alyeska.

At the top of the mountain at Alyeska there's still snow and risk of avalanche (hence the fencing), but that didn't stop a little bit of good natured snowball throwing.

The view from the top of the mountain at Alyeska.

Only God

Mother's Day 

Jubilent parental faces reeling with joy and a little disbelief, and a little boy waking from anesthesia.

It wouldn't be a visit to Lurie without seeing our favorite, Katie!  This time she brought our friend, Molly, who was our nurse during stem cell transplant.  We much prefer seeing them both in a random waiting room and being goofy!

A long day at the hospital shows what love looks like.

It's a little hard to appreciate, but we've all gone gray in May for brain tumor awareness month.

What do you do when you're this cool?

Silly sunglasses and PJs - the perfect combination.

This week has been a lot about the sunglasses apparently.  Here's another cool crowd sporting their shades.

After weeks of building anxiety - trying to avoid grappling with the implications of some terrible oncology statistics - we take a breath.  All it took, was Dr. Lulla walking into the waiting room with a bewildered smile on his face and thumbs up.  That spot that we saw on the MRI 5 weeks ago, the one that made him give us 70/30 odds when pressed - it's gone.  It's not stable or just a little smaller - it's gone, and we are left saying, "only God".

Thank you to the many people from far and wide that held our family up in prayer.  Prayed for a clear answer.  Prayed for a miracle.  We do not know the exact mechanism that God used to resolve the spot, but we have no doubt that God heard your prayers.  Just as the judge granted the request of the persistent widow in Luke 18, through your persistent prayers, God has granted our request.  And that's the whole point of the parable anyway - to always pray and not give up.

This experience has taught me again to stop looking for signs in everything.  I already melted down over the 3 water bottles at Costco, but I was also freaking out about the rain on Tuesday, wondering if Chicago was preparing to cry with us.  I read into the bad traffic making us 25 min late, wondering if the bad news was just being delayed.  It felt like a bad sign that we didn't see Ken, the shark (as our family calls him) in the Lurie fish tank, even though we rarely see him.  I promise I'm not superstitious - I promise, but apparently worry makes me read into everything.  I'm going to try and stop, although that might be easier said then done - when we talk, please keep me in check.

We are overwhelmed with gratitude, thankfulness.  We are speechless in wonder and joy.  It comes still in waves of appreciation of knowing we have more mundane ahead.  And yet, even as there is so much celebration, relief and happiness - slowly something else sinks in.  We are still in the weeds.  We could be faced with all of this again at Jonah's next scan.  Having a scary spot that resolves is just as real in the cancer walk as having a scary spot that doesn't resolve.  As a friend said - what we have been through simply underscores the need for more research - in our small Lurie cancer community, there are frequent terminal scares and sometimes they end ok, and sometimes they don't.  We won't do our big fundraising  push until September, but if you ever feel moved to impact pediatric cancer, the neuro-oncology program at Lurie stewards donations well towards research.

As we find our footing again - cherishing every day as precious, but also not feeling like we have to count every minute - we step into summer.  The timing is again an "only God" thing that we can start our summer of celebration in the best and biggest way.  Thank you for all of your love and support.  Just as you have wept with us, now we all rejoice together!

Hearts for Hope Gala

Us with Sam & Christina Willis, the hosts of the Hearts for Hope Gala - Noah's parents, and good friends.

Pre-gala mystery posing makes everything more fun!

Last weekend, I spoke publicly for the first time about our journey with Jonah.  I had to practice and practice to make sure that I didn't fall into a blubbering mess, as there was a lot of scary uncertainty in our story.  I wanted to make sure that people heard the call to raise money for pediatric cancer research and didn't only remember my tears.  The night of the gala was fantastic.  There were so many familiar, supportive faces that encouraged and distracted me and the talk went off without a hitch.

A few of you, who were not able to attend the gala, have asked what I said, and so I will share my speech.  If you have been following along from the beginning, most of this will feel familiar.  I think part of the impact of the speech was the pictures of Jonah that went along, progressing through our story.  I will spare you the 80 some-odd pictures and just share the words.

As I am not a telepromted politician, this isn't the verbatim of what I said, but the spirit is there.
~~~~~
When Christina originally asked me to share our story, I was excited to share a story filled with hope, optimism, overcoming odds and lessons learned.  I was going to share a story that wrapped up nicely with a ribbon - that may have made you feel a little sad or uncomfortable at points but would have ended happy and hopeful.  Pediatric cancer isn’t like that though - and based on recent MRI results, our ribbon has frayed.  But before I get to the today in of our story let me go back to the beginning.

Our story probably begins in the Spring of 2014.  Jonah was a happy, healthy, energetic, bright 3 1/2 year old who was wildly popular in preschool.  He had both an older brother and sister as well as a baby sister.  That spring regular waves of nausea and vomiting started to interrupt Jonah’s exuberant play with growing frequency.  A visit to the GI doctor indicated everything was fine so Jonah was placed on a course of antacid and everything cleared up.  Jonah continued to live his life at full speed, with a bump in August 2014 when he was diagnosed with an anaphylactic allergy to flaxseed.

Super Bowl 49 is a game that will live in infamy in our family - not because the Patriots beat the Seahawks with the swirl of “defaltegate” in the background, but because Jonah had another flaxseed exposure that landed him in the ER.  After the Super Bowl event, Jonah’s nausea and vomiting returned and so we were back to GI.  This time the antacid didn’t help and in May 2015, Jonah was diagnosed with eosinophilic esophagitis (EOE), which is an allergenic condition of the esophagus that effect 1 out of every 2,000 people.  One of the best treatments for EOE is diet modification which we immediately implemented.  Unfortunately, Jonah seemed to be getting worse instead of better.  He was eating less and less, vomiting more and more.  Our bright, rambunctious, big living little boy was fading before our eyes.

By July, our pediatrician was growing concerned as well.  Jonah had become extremely lethargic and had lost almost 10 lb since spring.  He then had a episode of double vision followed by an episode of “word salad” (using proper words in incoherent order) and we were sent to the local hospital for an urgent MRI.  What started out as a normal Wednesday, forever changed the lives of our whole family.  A tumor, the size of a plum, was discovered in the cerebellum of Jonah’s brain.  That evening we were transported to Lurie.

The following day, it was confirmed that Jonah had medulloblastoma, which had metastasized through his brain and spin.  Although medulloblastoma is the most common malignant pediatric brain cancer, only 400-500 cases are diagnosed a year. The days that followed were a blur - surgery to remove the tumor, a life threatening hematoma, 2 weeks intubated in the PICU, another hematoma, surgery to place a shunt and central line.  Jonah also suffered a sever case of posterior fossa syndrome as a result of the surgery, which only occurs 20-25% of the time.  Basically, Jonah’s body forgot how to listen to his brain - it was almost like he was in a coma, but he wasn’t - he couldn’t breathe for himself, eat, move, smile or talk.  As much as we longed to allow Jonah to recover from the posterior fossa syndrome, his cancer was too far spread and he didn’t have that luxury.

Pediatric cancer treatment decisions suck.  As a parent, you have to decide between terrible and horrible.  There isn’t a third, more pleasant option.  We choose terrible, and Jonah received 5 rounds of high dose chemotherapy often referred to as the kitchen sink on the oncology floor.  We then moved onto a 6th round of chemo that made the first 5 seem like child’s play, followed by a stem cell transplant.

In stereotypical fashion, we saw Jonah’s beautiful bright blonde hair fall out, we saw him continuously nauseous and throwing up so regularly that it stopped phasing any of us.  We saw mouth sores that required a morphine drip to dull the pain, skin rashes that caused him to peel from head to toe, sepsis from neutropenia and other random infections.  We saw him so miserable, it was hard to find the light in his eyes.

Because of the posterior fossa syndrome, when Jonah wasn’t at Lurie, he was at RIC (now the Shirley Ryan Ability Lab).  Jonah had to relearn how to eat, smile, laugh, talk, squeeze a finger, sit, stand and walk.  His hand dominance changed as his right side no longer possessed the strength it needed.  A boy who had learned to ride a 20” 2-wheel bike at 4 was riding adaptive tricycles.

Jonah’s treatment didn’t end there though.  He went on to have radiation as well.  Radiation isn’t great for a developing brain, so much so that doctors rarely recommend it for children under the age of 3.  In the window of 4-8, things are grey.  Radiation destroys developing brains and most brain development occurs before the age of 8.  Jonah was 5.  Radiation is however currently the most effective treatment for medulloblastoma and so we moved forward.  Although our team couldn’t tell us the specifics, they guaranteed us that radiation will cost Jonah IQ points.

Jonah finally finished treatment May 2016.  He spent 275 consecutive days in the hospital, endured 6 surgeries, received close to 100 blood & platelet transfusions and faced many other hardships.  The blessing is, the spirit of the boy we knew returned once he was done with treatment.  He’s again silly, loving, kind, inquisitive and warm.  He is also different - he is more timid, less confident, more scared.  Cancer has changed him on the inside as well as the outside.

This past year out of treatment has been an amazing time for our family.  Sure, it’s been weighed down by 6 hours a week of OT, PT & ST for Jonah.  Sure there have been some academic struggles in school we’re having to work through.  Sure Jonah’s had 2 additional surgeries to address lingering complications of resection.  Sure Jonah wears hearing aides and walks with a walker.  All of those things are true, but our lives have been infused with gratitude for the gift of together.  Our family is again all under one roof doing normal life, traveling and making memories, filled with thankfulness.

This grateful, hope-infused gift of life was how I had originally planned to end our story.  Unfortunately, that wouldn’t be the whole story.  At Jonah’s last surveillance MRI in April, there was a new spot on spine that the medical team cannot explain.  It is not certain that this spot is recurrence or not, but suspicion is high.  If this spot is recurrent disease, there is no cure.  The median life expectancy for children, like Jonah, with metastatic medulloblastoma with recurrence is 1 year.  

This is why research matters.  Research matters not only to Jonah, but to his siblings who love him so, who have walked this impossible journey and may still face the loss of their brother.  It matters to his preschool friends from before and from now, who love his bright spirit and are being formed by their relationships with him.  It matters to the 13 children diagnosed with brain cancer today, and the 13 children that will be diagnosed tomorrow.

The reason events like this matter is because only 4% of the US federal funding is dedicated to all pediatric cancer research combined, which is less stand alone cancers like prostate and breast cancer .  Most pediatric cancer research is funded through private organizations, and events like this help fund those organizations.  

I know that there are many heart wrenching causes that you can help support and the mere fact that you are here means you likely are aware of the devastation pediatric cancer can cause.  I ask you to help not only in funding research through your donations, but also in raising awareness so that others beyond this room can be moved to help support research.  Pediatric cancer is something you can’t wait to care about until it impacts you, because then it’s too late.  The research of today will help the children of tomorrow much more than it will help the children living with cancer today.

Jonah will be having a follow up MRI on Tuesday, to hopefully give us more insight into what this spot it.  It is our deepest desire that the spot has miraculously resolved and we will be able to proclaim the power of prayer.  We also have to be prepared that the results will mark the beginning of our good-bye.  Either way, our family is going to choose to live.  We are going to lean in, love, celebrate, find joy and be together.  I encourage you to do the same.  And if you’re of the praying persuasion, we’d love your prayers for the MRI on Tuesday,

Thank you for allowing me to share our story with you tonight.  I hope it has helped to make pediatric cancer more personal for you.  

Closing In

No matter the outcome of this unexplained spot, it has inspired our family to live in ways that are undeniable.  To that end, we are going to be having some amazing family adventures this summer.  Some of those adventures require a passport.  Let me tell you that if you thought waiting at the post office on a Saturday with 4 kids for 2 hours to renew a passport was fun - you were wrong.  Also, if you are doing any passport stuff, for the sake of all the other poor souls in line, please have your paperwork filled out and ready as it makes the experience much more pleasant for everyone.

Everyone knows that we have today - the moment that we're living in - and that we're not guaranteed even another breath, and yet it is a simple truth that we quickly forget.  We feel entitled to plans for tomorrow, we feel confident in the road ahead, we feel safe in our future.

I wish I could say that having a child with cancer changes that.  I suppose to some degree it does - our family operates with a higher degree of gratitude for today then before, but the further out from treatment we got, the more entitled, confident and safe we began to feel.  The MRI in April was a kick in the pants reminder that we are not guaranteed anything.

Because every day is so precious, and because we are blessed with some unusual flexibility - our family will be leaning in and having some amazing adventures this summer.  The thing with amazing adventures is that they require a lot of planning.  For me, it is the distraction of lots of planning that is making this time before the next MRI passable.  I have found, that without distraction, worry is weighing heavier than optimism and I'd rather be distracted than worried.  Distraction isn't everything though, and as 5/23 gets closer, I can almost feel the time passing in my body.  It's like a great big countdown clock lives in my stomach and as the time gets shorter, worry is even competing with distraction.

And over and over God shows up - to comfort, to support, to remind - in ways I can't explain.  I was at a meeting this week where someone was talking about something that had nothing to do with us, and this person said, "God is working in the unknown, so we pray and expect Him to work even more so once things are declared".  A reminder of God's faithfulness as justification and proof for our hope and expectations for the future.  What really made this reminder grab my heart was the word "declare".  I don't know about you, but I rarely talk about the future declaring itself.  If you are our pediatric neuro-oncolcogist though, it was just a few weeks ago that you said to us, "We will wait and see what this spot declares itself to be".  We too see God working in the unknown of our story, and so we pray and expect Him to work even more so once things are declared.  Praise be to God, who is the same yesterday, today and tomorrow and will never let go.

Jesus Calling

These two, seriously - with all of the open seats in the van, they begged to sit right next to each other so that it would be easier to touch each other and play games on the ride to school.

And in the waiting - all the ways that God shows up.  A lesson that I have reiterated to myself over and over again - and it shows up to me at a time when it is hard to remember.

"Most of the situations that entangle your mind are not today's concerns; you have borrowed them from tomorrow.  In this case, I lift the problem out of today and deposit it in the future, where it is veiled from your eyes.  In its place I give you My Peace, which flows freely from My Presence."

Jesus Calling by Sarah Young

"Do not be anxious about anything, but in everything, by prayer and with petition, with thanksgiving, make your requests known to God."

Philippians 4:6

Water Bottles

Farmers Market is back in session as we were all too happy to be back in the routine.

A little Mother's Day Tea at Noah's Ark was a great excuse for some cute pics with my favorite little ones.

It was this silly pack of 3 water bottles that set off my internal meltdown at Costo this week.

Distraction is a wonderful thing, and there have been a lot of distraction in our house these past few weeks.  There are the normal distractions associated with end of year school stuff.  There are the distractions associated with Noah's concussion and Julia's broken collarbone.  There are distractions associated with some very exciting big living summer plans underway.

And then out of nowhere, something hits me and reminds me what I'm being distracted from.  This week, I was at Costco - the giant in bulk supply - and there they were - a 3 pack of water bottles, and with that, I was almost a puddle.  Why a 3 pack?  Why not a 4 pack?  I have 4 kids who need to drink, not 3.  Is this some sort of sign from the universe preparing me that I will only need 3 waters bottles in the future?  It's ridiculous, I know - but for a moment I was looking for a message in a 3 pack of Contigo water bottles at Costco.  This is what cancer does.

A friend recently shared a verse with me that I feel like I've somehow never read before.  It serves as a reminder that whether I indulge in distraction, of find myself derailed by the number of water bottles in a pack - it is reliance on a big God who is capable of miracles that will get me through.  I hope that it offers similar encouragement to you as well.

"We were under great pressure, far beyond our ability to endure, so that we despaired of life itself.  Indeed, we felt we had received the sentence of death.  But this happened that we might not rely on ourselves but on God, who raises the dead." 

2 Corinthians 8-9