Speechless

For everything we've had to say so far, today has left us speechless.  Jonah's therapeutic progress recently has been mind-blowing to us.  This weekend Jonah was walking with a walker, then yesterday we started eating yogurt in quantities greater than a few bites, and today he started talking!  Just like that, his whole vocabulary seems to be back!  His words are slow, at various volumes and sometimes a bit hard to understand, but they're back.  All this progress leaves us speechless and immeasurable grateful!

Unqualified

I feel very unqualified for the life that we're currently living.  "They" (the medical community) are always asking us which impossible choices we want to make - chemo or radiation, keep the medicine that may help him talk sooner but may be the reason he's throwing up or take him off, bring him to a packed ER when his white counts are non-existatnt for a critically low platelet level or wait until morning, add any natural supplements to his treatment or stick solely with conventional treatment and on and on.  These aren't decisions that have easy answers, and usually both options stink, and this is the world we have to navigate.  It is exhausting, it's scary and it's the norm.

I consider myself to be a person of at least average intelligence, and I feel so out of my depths all the time.  Which is the right choice; what will make Jonah better in the long run but also protect him in the near term?  What decisions will harm him and what decisions will help?  I just don't know, I never know.

Those of you who know me, know that I'm a bit of a Type-A planner.  I'm not very spontaneous and do a bit of research before coming to any important decision.  I don't like the "fly by the seat of your pants" nature of illness.  The decisions that we have to make are big, and often made with little to no time to research and survey.  I guess this is one of the ways cancer is growing me.  I'm going to be honest, I don't like this growing, but necessity breeds ability and that's how I do it, because I have to. The "why" I do it is easier, it's that sweet little boy that is being snuggled by his loving siblings.  He makes our family complete and we will do hard things that we don't like, don't feel qualified for, because we love.  I guess in these circumstances, it is love and not knowledge that qualifies.

Practical Side

I know that most of my posts have become more backward looking and reflective.  I wanted to dedicate a quick post to looking forward and asking for prayer.

First of all, Jonah is scheduled for an MRI on Monday, October 5th.  This is the MRI that will tell us if the chemo is working, if we're on the right track.  It's a very detailed MRI, and he will have to be sedated as it's a long imaging procedure.  Please pray for the results of the MRI and the wisdom in our decision making.  We have every reason to believe that the chemo is working but it's still a nerve-racking date on the calendar.

The other prayer request is for the sweet faces in these pictures.  Noah, Anna and Julia are being such troopers in their up-ended reshuffled life.  It's getting hard on them though.  Their desire to have everyone home together all the time is building.  The yearning for the old normal is visible.  These delightful joys are having to grow up in ways that aren't fair and are out of everyone's control.  I pray for their hearts to be protected during this time, that they would rest assured of how much they are loved and cherished even if it feels different right now.

Thank you for being willing to include us in your prayers.

Pain and Promise Over and Over

I know that I've already shared that the pairing of pain and promise is very poignant to me in this season, but truthfully, each day is touched with pain and promise and I can't help but see all of it.

In cancer-land, you make friends just like you do in normal-land, only it's totally different.  Everyone you meet is a friend on some level because you share this deep understanding and empathy of the pain the other person is walking through.  You speak the same language and share the same secret fears.  With some people though, you will more deeply enter their story, get to know their family, get to know their pain and promise.  It's weird though, because even in those relationships, you enter into the most vulnerable part of their story first and the relationship builds out.  You know their cancer story before you know their last name, before you know what teams they cheer for, what they do for work, what their hobbies are, ect.  All the normal things that friendships are built on come after you've become cancer friends.  In our cancer-land relationships, we've connected with 3 other brain tumor families with different tumor types.  This week has been filled with much pain for our friends.  One family lost their son, Ben, this week and Noah's family is expecting their final good-bye to be any day.  Both families are believers, and so there is promise amidst their pain, but there is much pain.

Even in the pain for us, there's promise too.  Jonah is having his best days ever.  He is starting to communicate with a clear and consistent thumbs up/down, he's counting with his fingers and using them to tell people how old he is.  He is eating multiple bites of applesauce, growling, laughing, smiling and blowing kisses at cowie.  He's playing with cause & effect toys, helping to turn pages in books and trying to sit up.  Our days are filled with so much hope and promise right now.

People often wonder how an individual can have faith in God when bad things happen to them.  I know some people wonder how we can trust God in our circumstances.  If I wasn't in this situation, maybe I'd wonder the same thing.  Here it is though, God is God, unchanging.  When "the sun is shining down on me and the world is as it should be" (Matt Redman) it's pretty easy to trust in God.  When "the road is marked with suffering" it's harder to trust.  What changed though?  The weather, not God.  God doesn't change, our circumstances do.  If we only trust in God in "the land that is plentiful, where streams of abundance flow" do we really trust God, or do we just feel good about Him?  God is the same God, even in "the desert place, though I walk through the wilderness".  God is God in the pain and the promise and because of that I am forever changed.

Do Not Be Discouraged

I feel so grateful that at the beginning of this journey, God put Joshua 1:9 on my heart.  It says, "Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Walking the journey of cancer requires all of these traits.  Sometimes you have to be strong, sometimes you have to be courageous, sometimes you can't be afraid and sometimes you can't be discouraged.  In everything God walks with us.

Today is a day where the reminder to not be discouraged is important.  We are done with round 2 of chemo and were actually "healthy" enough to go to RIC this weekend but they don't take a lot of weekend admissions.  We spent all day gearing up to hear from RIC that they had a bed for us and the call never came.  There were assurances though that they'd have room for us tomorrow.  Unfortunately, Jonah woke from his nap this afternoon with a fever of 101.3.  We knew from this morning that his ANC was low, so this counts as a neutropenic fever.  Best case scenario, we're clear for RIC on Wednesday, but it is disheartening to get a neutropenic fever before we even get to leave the hospital.

Getting back to RIC is so important for Jonah's recovery from the posterior fossa syndrome.  Strange as it is, we really can't wait to get back there.  The amazing thing is, that even in the disappointment of our delayed departure, I see the grace of God.  Had there been a bed at RIC for us today we would have gone and they would have sent us straight back, our day spent in ambulatory transport.  Instead, today he was able to do in-patient speech therapy and PT.  God is with us every step of this journey.

Another aspect of this journey that struck me as today in the need to not be discouraged, is Jonah's speech progress.  Everyone says that he's so close to regaining speech as they observe him laugh, blow kisses at cowie, howl in protest during vitals and get angry when strangers come in his room or he's told not to pick at the NG tube in his nose.  The thing is, he's not there yet.  Sometimes they put kids with posteria fossa syndrome on anti-depressants to help manage their frustration that they can't do or say the things they want to.  Today, after observing how upset Jonah got, our oncologist mentioned this might be in our future.  It hurts a mother's heart that in the midst of this impossible situation, my little guy's spirit could be struggling as much as his body.  It just seems so unfair that this has to be so hard for him.  On this front, I have yet to identify how God is specifically walking with us, and so instead I repeat Joshua 1:9 over and over again, knowing that it is true even when I can't see it because I have seen His faithfulness in so many other ways.  -- Do not be discouraged for the Lord your God is with you wherever you go.

Chillin'

We've been hanging out at Lurie for the last week.  It started with a stem cell harvest that we hope to use as rescue after the 6th round of chemo.  After the harvest was over, we started chemo round two.  I'd say that we've just been chillin' waiting for chemo to be over, but actually it's the opposite, we've been cooking'.  Jonah is on day three of random fevers.  These aren't neutropenic fevers as he still has white cells (although they're on the decline) and nothing is culturing, so there's a chance this is just how he's going to react to chemo this round.  We're not leaving Lurie though until the fevers resolve, so who knows.  This round of chemo has also caused much more throwing up.  We've added another anti-nausea med to the regime to help.  

It feels like we're in the middle of the journey, without much to report.  All of the stuff I mentioned is notable and governs our days, but it also feels like part of our new normal.  One thing though that still doesn't feel like the new normal is the outstanding community that we're part of.  Thank you all for everything!  We've had a number of out of town visitors to help with the kids and just offer support, meals at home, meals and visits at the hospital (still 8 weeks later), lots of people buying shirts, lots of people participating in the 8.5k run/walk, one-way carpools (where you do all the driving), acts of service, prayers, cards, texts, phone calls, emails and on and on.  We are running a marathon and are honored that so many are still running it with us.  Thank you for your loving support even as the newness of our reality wears off and becomes the regular.

A Good Bad

Jonah has learned a new trick in the last few days - it's a good bad kind of trick.  He's figured out how to pull his NG tube out of his nose as a form of silent protest, and he's done it twice in the last 2 1/2 days.  Although with therapy he is starting to eat chocolate pudding, cheetos and applesauce, he's not ready to sustain himself of a diet of ingested foods, so it's not a good trick; but it is a good trick because it demonstrates cognition, planning and developing coordination.  We are working on new taping methods to try and make it harder to pull out, because once his counts go super low again, they won't replace an NG for risk of infection, so then we'd have to figure something else out to keep him nourished that wouldn't be as effective.  This is kind of like when your kid punches the bully - you have to discipline them because you shouldn't hit, but secretly you're proud of them.

We are starting round 2 of chemo this afternoon, so we'll be at Lurie for the next 8-10 days and then we'll go back to RIC and try and pick up where we left off.  Everyone will be on high alert for fevers though, so I expect that even when/if he gets one it shouldn't be as traumatic as last time.  Prayers for that to be the case.

Get Your Run On

On October 3, 2015, in Arlington Heights, the Pediatric Brain Tumor Foundation is hosting an 8.5k as a fundraising event to help fund research for pediatric brain tumors and support Lurie Children's Hospital.  Our friend, Mandy Kelly, is organizing a team to walk/run on behalf of Jonah.  There's also a kids 50 yard dash, family activities and other entertainment.  You can register for free via the link (http://pbtf.convio.net/site/TR?fr_id=2281&pg=entry): click on "join existing team", search #teamjonahgoodall and register yourself and/or the whole family to come out and walk.  If you can not be there, you are welcome to go to the same page and donate should you feel inclined.  For those of you who are looking to provide support and just aren't sure how, this is another great opportunity.  This is one of those "the more the merrier" events and all are welcome to join.

It will be cutting it close, but if you ordered a #teamjonahgoodall shirt, they should be arriving on or before Friday, October 2nd.  If you're interested in a shirt and haven't ordered one yet, you still have a few days left (https://www.booster.com/teamjonahgoodall).

I promise we're not going to always be fundraising from you!  The shirts really were mostly just for fun, although we've been overwhelmed by everyone's response!  I was nervous we wouldn't hit our 50 shirt goal and instead have already sold over 260!  Thank you thank you!  That kind of support has blown our socks off!

Pain and Promise

Jonah's latest blanket trick - this is all his own idea and he smirks when you take the blanket off his head.

 Julia gearing up for her first day of school - such a big girl!

 And she's made it - that 2's class isn't going to know what hit it!

Julia and Josh, ready to conquer the class and then the world!

One of our worship leaders at Willow, Brandon Grissom, has a kickstarter campaign to produce a new album, Pain and Promise (https://www.kickstarter.com/projects/171185871/brandon-grissom-new-album-pain-and-promise).  I only know Brandon as "the guy on the stage", so I don't have any insight into the album, but the title has resonated deeply with me.  Life is full of pain, and life is full of promise.  God has not promised a life without pain, in fact, pain is basically a guarantee.  God has promised however, to not leave or forsake us and God has promised us eternity.  The pain can make the promise hard to see or remember, but it does not dull the brilliance of it.  Never before has the idea of living with the pain and promise held so closely together been more real to me than now.

Julia started preschool this week.  I allowed myself to be so excited for her and focused on her experience that I managed to block out the hole of Jonah not going back, until we got to the parking lot.  This daily life is a minefield of "what is versus what should be".  Jonah should have been back to school to be with his friends, energetically reveling in pre-k delight, but in reality he's in a rehab hospital relearning how to sit, stand and chew while waiting for his next round of chemo.  Pain is real.  Promise is real too though as I was washed with joy watching Julia fall right into the rhythm, delighted at being a big enough girl to finally be at school.  It's an added bonus for her that her "boyfriend", Josh, is also attending the same preschool this year.  The heartwarming joy of watching these two together is a blessing unto itself.

Jonah is doing well.  He's tearing up the therapy circuit here - practicing sitting, rolling over, knocking towers down, standing and taking 2-3 assisted steps, laughing, smiling, riding an adaptive bike, drinking juice and eating pudding and Cheetos.  Never before have I been so excited to see one of my children eat junk food!  We see so much promise in the progress that he's making, but it too is balanced with the pain of being in this situation.

Jonah is heading back to Lurie tomorrow.  This is a planned visit and we're happy to not be going back in crisis.  He will have his stem cell harvest Thursday & Friday.  These stem cells will be frozen and stored, to be used after his 6th cycle of chemo, which is such a mega dose that he will need his stem cells to "rescue" his blood counts.  At least that's the plan for now.  After the harvest is complete, Jonah will start his 2nd cycle of chemo, so we'll be a Lurie for about 2 weeks.  After that, we'll be on to RIC (part 3), with fervent prayers that as his blood counts fall he is spared at least from another septic incident if not from neutropenic fever entirely so that he can continue his great therapeutic strides.  Pain and Promise, Promise and Pain - this is the cycle that we live.

RIC (Part 2)

After our extend stay at Lurie for what is being called culture negative sepsis, we're back at RIC.  We come back with mixed emotions for sure.  In this most recent time at Lurie, we have seen Jonah make  many great strides - he is occasionally laughing and trying to smile (that's what he's doing in the picture), he is making more purposeful movements with both his hands, he is gaining trunk strength and is doing a better job at helping sit up.  We are filled with hope and eager anticipation about what kinds of improvements Jonah might be able to make with focused therapy.  Today, with a lot of help from his therapist, he stood, and she thinks he should be ready to practice taking steps next week.  We are filled with hope for good reason.

We are also feeling cautious.  Our first experience here was a bit scaring and it's hard to feel at ease.  Due to a few influential people in our lives, and after our last experience, our profile has been raised and we have the ear of some of the mid-level and senior leadership at RIC and they are doing everything they can to guarantee a better stay.  That said, Jonah is now on TPN (broken down fats, proteins and electrolytes as added nutritional support) which is given through his central line, and central line mismanagement is a huge source of infection for chemo patients.  There also have been a few minor issues in transfer around eye drops and feeding schedules, and so we are filled with caution for good reasons too.

We're also a little scared.  In this world of pediatric cancer you make friends that you really like and pray the best for.  We have made friends with a lovely family that also happens to have a little boy, Noah, with medulloblastoma.  Noah's case was initially less complicated than Jonah's.  His tumor had not spread and was able to be complete removed, he didn't have any hematomas and he didn't need a shunt.  He was able to do rehab before starting chemo to begin recovery from his posterior fossa syndrome.  His scan in July, after his 5th cycle of chemo, showed that the tumor was still gone and they were gearing up for the 6th cycle to be followed by a stem cell transplant (this is the same protocol we're on).  In pre-transplant scans, they discovered that the tumor is back in 2 places in his brain and in his cerebral spinal fluid.  Their 6th cycle is cancelled and they're moving straight to radiation.  In the meantime, the tumors are causing fluid build up and a lot of other complications and things are looking very scary.

It's weirdly easy to get caught up in the hematomas, the therapy, the chemo side effects, the sepsis, and forget that Jonah is fighting a hard fight against a cancer that is notorious for fighting back.  I know, and believe, that God is the author of all of our stories and that He is writing Jonah's story to be Jonah's story and no one else's.  Sometimes I have to remind myself that in the face of other people's stories.

For now we pray for our friends and their son, Noah.  We pray for Jonah, as we are filled with so many emotions.  We pray the words of "Praise You in the Storm" and we wait to see how God will write Jonah's story.

                                                    "Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth