All That Glitters is Gold

Jonah, Dr. Lulla, Lulla the Giant Cow and Cowie all pose for a picture as we celebrate another stable scan.

We ran into Stacy, from neurosurg, on our way off the floor.  We really have a great neurosurg team, so it's always like a little party when we're together.  Stacy also got us texting with Dr. Volk, who was a neurosurg fellow last year who has gone back to New Orleans.  Dr. Volk may actually be Jonah's favorite doctor of all time, so anyone associated with him ever is already on Jonah's good side.

Before heading over to Lurie, we had an appointment at RIC.  That gave us a great excuse to swing by the old floor and see some of our favorite therapists.  It was so sweet to have the gang all together again.  If I'm being honest, it was also pretty encouraging to hear them all ogling over his improvements in their given disciplines.

Katie, Jonah and the cowies.  Katie is the APN that has supported us through this journey at every twist and turn, and may actually be Jonah's best friend in the hospital.  Katie can bring the serious medicine when needed, but watching the two of them together is usually pure joy as they have such a special connection.  

This is Wendy.  Wendy has the most crazy job title - she's a brain tumor coordinator.  She's actually THE brain tumor coordinator.  That means that if there's medical stuff that's too hard to understand she explains it more simply, it means she carries around Jonah's medical history in her head, it means she's always thinking to make sure we have our bases covered.  It's amazing that she can do all of these things while still being a delight to be around.  Because we're out of the thickest woods, we don't always get to see Wendy, but when we do we're always happy.

This - this is love.  This is Jonah and Katie when they thought everyone else was busy talking.  Katie did all of the medical stuff of a basic exam, and then they got goofy and then they hugged.  You can't manufacture this - this love and care is present in all of our team members and most on display with Katie.  When you have a team this great, it makes it just a little easier to hear the good and the bad and trust that Jonah's best interests are always at the center of the conversation.

Because of your great generosity, we did it!  We were able to present the euro-onc team pure gold and then some.  To date, we have raised $25,803.  We will leave the link active through Friday in case you'd still like to donate, and then we won't ask again until next year.

Tonight we breath a deep sigh of relief.  We will sleep a little more soundly.  We will plan a trip for Thanksgiving.  The results of Jonah's MRI came back and they are perfectly stable and everything we prayed for.  If you remember back to the MRI in June, I mentioned that there are a few spots on Jonah's spine that are abnormal.  These spots continue to be stable, which leads us to more and more confidently believe that they are spots of scar tissue, but we can't be 100% certain.  With every scan, we'll watch those spots closely - with a moderately suspicious eye - and keep on living in-between.

Thank you for your prayers, words of encouragement and general support.  We truly believe that God hears your prayers on our behalf.  We also know that we have a community praying for us and around us when it feels to hard for us to do it.  These things matter.  God is bigger than cancer.  God is not a vending machine, where you make your requests and then you get what you want.  Equally, there are stories in the Bible of God being swayed or moved to action by the prayers and faith of people (Abraham negotiating for Sodom & Gomorrah, Jesus healing the royal officer's son, Jesus raising Jairus' daughter from the dead, etc).

We also want to thank you for your generous donations to our "Turn Your Green Gold" fundraiser.  Simon hasn't loved having gold fingernails this week, but recognizes that it's all in fun for a good cause.  When we presented the check to the team, Dr. Lulla was telling us that because of how it's structured, the Lurie Circle of Friends Foundation is able to give 100% of every dollar raised to research.  Because of that, our $24K+ donation will go far in furthering research.  Now, although $24K might be a lot of money, it can seem like a drop in the bucket when facing something as big as pediatric cancer.  To help you realize the difference it will make, here are a few things that $25K can do within the brain tumor program at Lurie:

* $25,000 will fund the salary of a clinical research assistant for about 5-6 months
* $25,000 will fund the salary of a research nurse for about 4 months
* $25,000 will fund some to all of the various supplies and equipment that are needed to conduct research
* $25,000 will provide "seed money" to get a new research project off the ground

Not only does your prayer support matter, your financial support matters too.

Now that we have the favorable results of the MRI, our eyes turn to Jonah's facial reanimation surgery scheduled for October 14.  This is a 6-8 hour procedure that will eventually allow Jonah a more symmetrical smile, but will require a 3-5 night hospital stay at minimum.  More details will be forthcoming, but that will be our next prayer request.  I guess that's one of the things with cancer, it never leaves you void of things to pray for.

As we have been in the practice of living wholly in the day, celebrating the moment in front of us - we are overwhelmed with the blessings of today.

Pure Gold

Trial run to turn Simon's hair gold.  I promise that he's trying so hard!  He's got 3 different products in his hair.  Noah only has the gold hairspray in and it seems a bit more obvious on him.  Our learning from this year is that going gold with your hair is hard!

Gold hair goes to work.  I think this might be the whole bottle of gold hairspray to get this little glow.

Lighting does seem to matter, and the night of the trail run did reveal that his hair was gold.

After your generous outpouring, Simon did his part and has worked really hard to get his hair gold.  Given the number of gold hair products in our house, maybe we'll even be able to talk him into a second day!

Tomorrow marks Jonah's first official post-treatment MRI.  We are going in bright and early and have an expected start time around 7:30am.  This makes it easier to follow the NPO (weirdly this means no food by mouth) order, and it also makes it nice that it doesn't hang over us the whole day.  Please join us in prayer for a stable scan.

We are $2,907 from being able to donate pure gold - 24k (24,000 Washingtons actually) to the Lurie pediatric brain tumor research program.  If you haven't had the chance to contribute yet, there is still time!  We are going to be at Lurie on Wednesday for Jonah's MRI follow up and would love to be able to present Dr. Lulla with a $24,000 check.  Will you help?

http://foundation.luriechildrens.org/site/TR?team_id=35382&fr_id=1410&pg=team

Gold Magic

Family hands.  Anna got distracted by color changing polish, so her gold may look a bit more green, but a family that polishes together raises money and awareness together too.

Don't believe Noah's face - he was totally "into" it.  Gold fingers all around!

They boys drying.  They got to experience the wonders of waiting for your manicure to dry and already see the virtues of a no-chip, although none of them were that committed.

A behind-the-scenes peek at Simon going gold.

We did it with your help - we've managed to turn Simon gold!  Through your astounding generosity, we have raised over $21,000 for pediatric cancer research.  This money will help fund research for new treatments for brain tumors specifically.  We can't thank you enough for showing up in our fundraising efforts.

If you follow Simon on Facebook, you will see that he has begun to document his week with fancy nails and hair is to follow shortly.  Already, his nails have sparked a few conversations about pediatric cancer awareness, so this is really a win all the way around.  For those who don't follow him, I'll be posting on the blog throughout the week.

We pray with deepest earnest that this week will be marked with only with joviality and merriment.  That celebrating will not seem out of line and that gold nails & hair are the only way we work to raise awareness of pediatric cancer this week.  You see, Jonah's MRI is Tuesday, September 27.  This is the first real post treatment MRI - this is the first time he's been out of treatment for months and months (4 months and 11 days, but who's counting).  The optimistic side of me sees how fantastically he is doing - there are no clinical signs that would cause worry.  He literally seems to be doing better and better each and every day.  The dark side of me is quick to highlight that these scans happen every 3 months to try and catch recurrence before there are symptoms.  And so, we pray for disease stability.  We pray that we have the strength to lean in and look up, no matter the results - we know that God is writing a suspense-filled story - and so we also pray for peace and hope and joy.  We have today, and that's all we know, and though we pray for many more todays, we breath in for what is right in front of us.  Please join us in prayer for the 27th, for the conversations that may be sparked through gold nails and for the future that lay in front of our precious little boy.

For those of you who are interested in contributing to the gold cause, I know that the fun incentives may have been reached, but the incentives that really matter are still out there and therefore I have included the link.

http://foundation.luriechildrens.org/site/TR?team_id=35382&fr_id=1410&pg=team

PBFT Starry Night 8.5K

Jonah walking towards the finish line.  He did most of the mile "walk" in his wheelchair, but managed to walk for the last quarter of a mile or so.  What a difference a year makes.  Last year, the weather was cold and wet - and Jonah was in the hospital, his discharge months away, battling through the early cycles of treatment - literally fighting for his life.  I don't remember a lot about last years race, but I do remember it being hard to leave him to attend the walk.  A year later, the sun was shining and our boy was with us showing us all how strong and mighty he is.

Brain tumor patients are given yellow shirts and yellow lanterns - stars of the evening.  As our boy in yellow walked across the finish line with the bright sun on him - he really is a giant hero in a small package.

We didn't have a team photographer this year, so we failed to get a big team picture.  This is what remained of the team though after most folks finished the 8.5K.  Not a bad looking crowd if I say so myself.

Everything is easier if you have someone by your side.  We have been blessed to have many people by our side, but was we were ready to cross the finish line, I was glad it was Anna with me.

There is no explaining 4th grade boys.  This is after I told Noah to "act normal".  We're so thankful for all of the friends that came out to support #teamjonahgoodall!

The cancer world is weird.  You meet beautiful people walking terrible journeys.  These friends become friends who understand the most important part of your life without explanation.  Fever while neutropenia?  They get it.  Crack in central line?  They get it.  Your antiemetic plan?  They get it.  Anxiety over a headache or an upcoming MRI?  They get it.  And sometimes you get to meet up, not in the halls of the hospital, but in a place where you can make a difference for pediatric cancer.  We may all be wearing different shirts, but our hearts all desire the same thing - better treatments, more cures and better lives for those touched by pediatric cancers.

As expected, Julia ended up being carried for most of the mile race, but before that, she and Josh ran the 50 yard dash.  Check out their serious runner faces!

Through the months, Simon and I have felt the support of so many people.  What was so special about this event was all of the friends that showed up for Noah & Anna.  For them to feel the love and support, the encouragement and presence of friends is something intangible to a parent.  Thank you to everyone who showed up - your allowing your kids to be there with our kids means more than we can ever express.

The night ran late and Jonah was fading, but he was at the heart of why so many people were there so he just kept on going.

God works in funny ways.  At Lurie they often referred to Jonah and Noah Willis as the "Bible boys" - 2 young boys battling medulloblastoma - and in no time we became fast friends with the Willises.  Our hearts grieved along with them when Noah unexpectedly lost his battle last fall.  He moved from a yellow lantern (in honor of a current cancer patient) to a blue lantern (in honor of a cancer patient who has passed away).  This year, without knowing it, Jonah selected the yellow lantern, which happened to be next to the blue lantern the Willises had lit for Noah.    The Bible boys are together again, glowing in different colors with one purpose - to change the future.

Post race snack for the 7 year old girls.  These girls begrudgingly ran most of the mile, so they really worked for their apples.

Jonah lighting his lantern.  Last year we lit one in his honor, but it's much better to have had him with us to do it himself.

Jonah was #teamjonahgoodall strong!

More friends - faces and hearts that we've known forever.  We strive to change pediatric cancer for them and for the generations that come after them.

Far be it for Jonah to only let Josh & Julia get in on the 50 yard dash.  He may not have won the race, but he worked the hardest.

Is that Liz peeking out from behind the sign?  Of course!    We were so very happy to spend the afternoon with some of our favorite grown ups too!

Noah's Ark Christian Academy represents with - Mrs. Nenninger, Mrs. Becker,  Mrs. Brown and Mrs. Caplin.

The Pediatric Brain Tumor Foundation (PBTF) is the world's leading nonprofit funder of childhood brain tumor research, and they host an annual Starry Night 8.5K run in the Chicago area every fall.  It takes about 28,000 steps to complete and 8.5K, which is the number of children and teens living with a brain tumor.  Their funding makes a difference in the pediatric cancer landscape, which only receives about 4% of the NCI budget.  That 4% covers all pediatric cancers, of which there are over 150 types.  PBTF makes sure that brain tumor research has more money than the NCI provides.  This is a big deal as brain tumors has just become the leading tumor type in pediatric cancer deaths.

Thank you to all who came out to walk or run with us.  Thank you to all of you who donated to the cause.  We are so thankful for your support and we hope to see you next year!

Royal Oaks Apple Orchard

The best part of apple picking in early September is that the trees are full of apples!

The best part of apple picking?  Obviously it's sampling the produce as we go!

Julia is always ready with a smile.  She's such a bright little girl.  She's also into flapper style headbands right now and she does a decent job pulling them off.

Proof that you don't teach attitude.  Look at Anna as the girls wait at the wagon stop!

Anna really wanted me to take this picture of her half eaten apple.

Seriously, have you ever seen an apple orchard tree so full?  It was really cool to see.

Since they didn't get to go apple picking together last year, this crew wasted no time making up for last year.  They picked pecks of apples and looked cool doing so!

After the picking was over, there was of course apple cider donuts and then a visit to the petting zoo.  Jonah's love for all animals remains strong.

Turning Green Gold

September is pediatric cancer awareness month.  Fifteen months ago I knew almost nothing about pediatric cancer.  Sure I had been to a movie where they collected spare change for St. Jude during the previews, but it wasn't real.  It seemed like this far away thing that only happened to other people.  Even the day of Jonah's diagnosis, when we knew something was wrong - cancer was the last thing on my mind.  I remember calling Simon to tell him that the pediatrician was sending us to the hospital for an MRI to "rule a few things out".  Simon asked if he should leave work and meet us at the hospital.  I told him that that wasn't necessary - we had friends coming over for dinner, so he should finish his day and we'd just meet him at home.  There may be something wrong, but it couldn't be serious.  Simon used his better judgement and met us at the hospital.  He was there when our pediatrician had to tell us that the MRI showed a concerning mass in Jonah's brain and that we would be transferred to Lurie Children's Hospital that evening.

Since that day, I have become far more aware of pediatric cancer, and everything that comes with it, than I ever imagined.  Through the months, I have shared facts about the pediatric cancer landscape and shared our journey.  I find myself wishing that I would have known more, cared more when I had the chance - when it could have made a difference for us.

Last year, we were too in the trenches to look at the big picture, to try and impact change.  By the grace of God, today we are in a different place.  Because of that, we want to take this month to try and change the landscape of pediatric cancer - to change the future.  Our goal, is to raise $20,000 to donate to cancer research at Lurie.  Because everyone loves good natured fun, Simon has agreed to some silly incentives to help sweeten the deal, but at the heart of this - it's about changing pediatric cancer.  It's about changing things so that the journey will be less treacherous for those that come after us.

Today, 43 families had their lives changed forever when they received a pediatric cancer diagnosis and 7 families will say good-bye to their child.  Tomorrow it will be the same.  These are unsuspecting families, with little to no idea about the diagnosis they are about to receive.  If they could be given better treatment option, maybe even a cure, we would all win.  Although Jonah is doing fantastically today, the risk of recurrence is still high.  If we could have better treatment options for recurrence, a chance of a cure - that really matters to us.

We know that there are a lot of opportunities to donate to a lot of difference causes.  We promise, this will be the only time we ask in ernest, directly, that you consider donating to a cause has redefined our family.  Whether you're able to donate $25, $2,000 or anywhere in between, every dollar will go towards a better tomorrow for those diagnosed with pediatric cancer.  The link below can be used for donations.

Whether you are able to donate or not, please keep us in your thoughts and prayers as we approach Jonah's next MRI, 9/27.  He is doing so incredibly well right now, and we have never enjoyed "normal life" so much.  Please pray for a stable MRI and a disease that will stay in remission forever.

http://foundation.luriechildrens.org/site/TR?team_id=35382&fr_id=1410&pg=team

Back to School - The Littles Edition

Julia walking from the chapel to her classroom on the first day of school.  She was collecting her "family" along the way.  So thankful that she loves school so much!

This day - we weren't sure that this day would come.  I had to keep my crazy celebration on the inside so that to Jonah it was just a normal first day of school.  I don't think anyone has ever fought so hard for a first day of pre-k as this little man.  We're so proud of him for fighting with such joy, perseverance and humor.