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