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.