Tube-less

We are finally heading back to RIC today!  This round 3 stay has been longer than anticipated due to a few of the normal not-normal complications of chemo.  Among the complications, Jonah experienced a UTI, possible SIADH (where your brain tells your body to get rid of too much sodium, which is a big problem) that resolved quickly, concern of a seizure (negative) and almost uncontrollable nausea & vomiting.  The vomiting does have a silver lining though - he lost his NG tube, which was one of his arch nemesises!!!  This isn't the first time he's thrown his NG tube up, but this time, our team is willing to give it a trial to leave it out!!  If it's possible to love your medical team, I mean really love them, not just like them, this decision has made me love our medical team.  Dr. Lulla & Katie, I LOVE you!!  I don't have the vocabulary to describe Jonah's anxiety and animosity provoked by his tube.  The only personal goal he's made so far was to get rid of the tube, which because clear as soon as he started talking.  Although his food consumption still needs to increase to make this successful, he is doing an amazing job taking all his meds by mouth, "even if they taste disgusting".  He really wants this!

I share this update to ask for specific prayers - prayers that Jonah will be able to develop the stamina to consume the required calories to maintain his weight, and prayers that he continues to be able to take his "disgusting" medicines - prayers that this trial is successful.  Our primary treating team, Dr. Lulla and Katie, are onboard with this trial, but the in-patient team is quite worried we're being to aggressive.  This "W" for Jonah and his spirit, would have more personal impact for him than the good MRI results we received as few weeks ago, and so this matters a lot.  I know NG tubes aren't the worst thing in the world and actually can solve a lot of problems, but because it matters so much for him, it matters so much for me.

Numbers

I just signed Jonah up to participate in the Beads of Courage program through Lurie (http://www.beadsofcourage.org) as a way to visually represent the journey that he's on.  We keep telling him how proud we are of him, but he really doesn't remember much before 3 weeks ago, so this way he can see what he been courageous through.  Most people start this program at the beginning of their diagnosis so there isn't a big reflection back, but we're just starting now and have had to tally a bunch of things, that really put this journey into perspective (here are a few of the more impressive ones).

Days/overnights in-patient: 95
Days of chemo: 18
Blood & Platelet Transfusions: 12
Imaging (MRI, CT Scan, X-Ray, Ultrasound, EEK): 39
Admissions to the PICU: 2
Surgeries: 4
Dressing changes: 12
Tube Placement (Foley, NG): 7
Hair loss: 1

When he's beads come, they will tell his story in a tangible way.  As we have just finished up round 3 of chemo this week, there are many more beads for Jonah to collect as he faces 3 more cycles of chemo and likely radiation.  The bead we covet most, is the purple heart, which represents the successful completion of treatment.  The heart is purple, because these kids become our heroes, fighting hard battles everyday, often with more grace and humor than any adult could muster.  Until that day comes, we keep praying for the purple heart for the little boy who becomes a little more my hero everyday.

Starry Night

A little delayed in posting, but, on Saturday, October 3, on a cold and damp evening, we were surrounded by a faithful segment of #teamjonahgoodall at the Starry Night Event hosted by the Pediatric Brain Tumor Foundation (PBTF).  The Starry Night Event is an 8.5k, which requires approximately 28,000 steps, which is the number of children living in the US with a brain tumor.

Once again, we were overwhelmed by the outpouring of support.  There were friends from preschool, elementary school, church, the neighborhood and Boston!  It was kinda like a wedding reception, as people from all aspects of our lives teamed up in support.  The weather wasn't great, so it would have been easy for people to change their mind, but #teamjonahgoodall was probably 60-80 strong (I'm a terrible estimater).  As a team, we raised almost $7,000 to support pediatric brain tumor research, which is clearly a worthy cause in our minds.  Thank you to all who supported, either in person or with your checkbook.  We may not feel worthy of your support, but the research is!

Photo credits go to Cathy Saenger who not only participated in the event, but also bravely brought her camera out in the weather!

#teamjonahgoodall shirts debut at the event.

I'm serious, it was cold - so the hat and winter jacket weren't overkill.

Our talented friend, Linda Eberts, took the shirt logo and made a sign.  Can you imagine that kind of creative ability?  I can't!

This is most of the #teamjonahgoodall crowd.  Cathy did hand the camera to a stranger, so you will note that a few folks on the side got cut off, but it wasn't intentional.

Only Jonah could have completed this picture.

Julia & Josh are apparently already engaged, so this is just a picture of things to come.  At least she'll have great in-laws!!

The ladies of Noah's Ark Christian Academy.  Best preschool/kindergarten ever!

The starry night.  White were general lanterns.  Yellow were stars currently fighting their battle or in remission.  Blue were stars who lost their battle.  This blue represents our friend, Noah, who had lost his battle the week prior.  Too many blues were mixed in, too many blues.

Daily Mercies

After being so heavy in the last post, I wanted to also share evidence of the small mercies granted to our family every day.  These are the moments that sustain us, that lift our spirits and bring joy to our days.

 Jonah and I decorated a pumpkin to be called "Brownie" after the food he was really craving that day.

There's a wedding musician that brings flowers to RIC from weddings he performs at.  This week, he not only brought flowers but hats!

More hats and sunglasses with attached sideburns!

Tuesday/Thursday are Julia's favorite days at school because her "boyfriend" Joshie is there too.

We try and not play favorites, but Anna-Banana may be Jonah's favorite.  This could have to do with his love of food and her role in facilitating that.

Can you tell it's almost Halloween?

To enjoy a nice fall day, we went to a park and sat in the grass.  The pure joy that Jonah got from feeling the grass, pulling it up and smelling it, and throwing it around brought tears to my eyes.  There is immeasurable beauty in the mundane.

When your friends have a therapy dog that comes to visit while you're home, life couldn't be better.

Julia, of course, had to have a pink cake for her birthday.

You want a water gun fight?  You got a water gun fight!  Again, simple pleasures and the heart of joy.

I don't think we'd every actually come downtown for the marathon, but since they ran right past Ronald McDonald house, how could we resist.  It was cool!  We also got to cheer on our friends, Ryan & Mandy Kelley, who ran a killer marathon!

Julia's birthday buddies, Joshie & Samantha, helped keep an annual tradition alive of our 3 family birthday party.  Only the best of friends would trek to the city with their families on a Sunday evening to enjoy the wonders of an RIC birthday party.  Again, it is the beauty of everyday things that take our breath away.  The cupcakes from Sprinkles helped too.
 

In everything, we couldn't ask or dream of better friends or a more supportive community.  We're almost 12 weeks into this journey and everyone still keeps showing up in big and small ways.  We know we don't deserve such steadfast and faithful support, but we're not going to question it, we're just going to be grateful, so very grateful.

Complicated Hope

I'm sorry that we've been a little MIA these past few days.  Honestly, I think it's because I'm personally having some serious head/heart disconnect and I'm having a hard time putting it to words.

First of all, all of the celebrations though.  Jonah's MRI to check the progress of his tumors was very favorable.  There was noticeable reduction in tumor load.  Our team is very happy with these results and told me that it was unrealistic to expect there to be no tumor load after 2 treatments.  Also, despite high doses of cisplat (chemo drug), which often negatively impact hearing, Jonah's hearing is still intact.  In terms of physical developments, Jonah is talking up a storm, expressing his opinion on just about everything.  He's eating more food, standing longer, taking more steps, sitting up straighter, practicing writing and on and on.  If you haven't seen him in a while, you'll be amazed at how much better he seems.  As a product of his improvements, he was able to come home for a few hours this weekend which was a gift like no other to all of us.

So much to celebrate, so much to cherish.  Glimmers of hope shine brighter and brighter every day.  It is in all of the good, that I find myself more overwhelmed and scared.  Maybe it's the initial adrenaline wearing off, I don't know.  I think that in this world, with hope comes fear.  Real hope in this world puts your heart on the line as disappointment could be around the corner.  Romans 5 talks about suffering and hope.  It says "We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit."  The hope of Romans 5 can only be understood in the preceding verses though, "Therefore, since we have been  justified by faith, we have peace with God through our Lord Jesus Christ.  Through him we have also obtained access by faith into this grace which we stand, and rejoice in hope of the glory of God."  The hope that does not disappoint is the hope of heaven, not the hope of healing.

Yet, even as my heart grieves the unknown outcomes, God fills my day with other reminders - "Be still in the presence of the Lord, and wait patiently for him to act" (Psalm 37:7), "Do you not know?  Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth, He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak." (Isaiah 40:28-29), "Unrelenting disappointment leaves you heartsick, but a sudden good break can turn life around." (Proverbs 13:12), "Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness." (Lamentations 3:22-23).  These are the verses that come in my devotions, and they are somehow spot on to speak to my heart.  I want guarantees that this world just can't give, and so I'm trying to feebly look to God to strengthen me in my weakness, to wait patiently, to celebrate our good breaks and rest in the new mercies of each morning.  I wish it were as easily done as it is said, but this is where I can prayerfully put my effort.  I can't control our outcome, I can't control the cancer, but I can guard and grow my heart which will help.

Comfortable

As I sit here waiting for Jonah's  MRI to be complete, my mind drifts back to a devotion that I keep re-reading about comfort.  I'd love to give proper credit, but all I know is that it comes from the Bible app on my phone, from the "Finding Comfort in Pain" plan.  

"How do we respond when we experience great pain, failure or struggle?  In addition to other things, we pray to God for His comfort now and His supernatural relief from discomfort later.  In this mode of thinking, God's comfort represents a barrier between pain and us.  Comfort is to sleeping on a feather bed as discomfort is to sleeping on the rocky ground.  But, should we seek a comfy life when Jesus himself had no place to lay his head?  Doesn't God desire to comfort His people?

The history for the word "comfort" reveals an important narrative.  The word is made from two Latin word parts, com- , an intensifying prefix which means "together with", and fortis, which means "strong or strength".  Later, the Latin word confortare comes to mean, "to strengthen much".  Eventually, an Old French word, conforter, would add words like "solace" and "help" to the definition.  In the 14th century, another French word conforten is defined as "to cheer up, console".  Finally, by the 17th century, the English version of the word implies the sense of physical ease that we understand today.  In about a millennia, this word went from meaning "together-strength" to meaning "pain-barrier.""

I find "together-strength" comfort in knowing that "I am the Lord, and I do not change" (Malachi 3:6). Alone, I don't have the strength to bear the waiting and wondering - is chemo working?  Does Jonah have a chance?  Are we able to continue to delay radiation and protect his developing brain?  However, with "together-strength" I wait, and know that the Lord is God and that He does not change - no matter what the MRI holds, and that is the comfort that carries while we wait.