By the grace of God

I've been itching to write about how God has done miraculous things throughout this whole process.  I think most all of you have seen the affects and outcomes, but we have been blessed with an up close and personal view of Christ's power and I want to try to share that with all of you.  It's a long read so grab a cup of coffee and a quiet space and dive into our heavenly Father's crushing mercy and glory with me.

Experiencing it and living in the tension of the pain and hope and bewilderment and joy that has been our daily walk can't be communicated through a screen.  Life has been raw.  But I know so many of you have joined us in this journey and so as you're reading these words and what God has done I just ask you to remember where we've been.  I don't know why it feels important to me, but it most certainly does.

My second preface to this story is that understanding where the line between God starts and medicine/science end and how they interact isn't the right question to be diving into in my opinion.  My frame of mind is that the two are working at the same time and that God is moving through what we learn as humans.  Our surgeons and medical team were so instrumental and life-saving AND God has done miracles.  Here's some of the story of these miracles.

The story really starts around 3 weeks ago on Saturday the 16th.  That's when we finally agreed that something was up with Isaac's chubby face.  We scheduled a visit on Tuesday the 19th with our family doctor (Silver Creek Family Medicine).  Our regular doctor was on vacation, but Nurse Practitioner Hupp saw us and immediately knew something was up.  A 24 hour urine test was ordered to check Isaac's cortisol levels.  That evening Dr. Houts checked her emails and ordered a CBC (complete blood count) as she agreed something was up.  A quick and important side note.  God blessed us with the ability to move quick in this situation.  The speed that the doctor's moved and had the ability to move was astounding.  We're sitting 3 weeks to the day away from an unbelievably rare medical condition and we're potentially fully healed.  I have no doubt in my mind that God orchestrated schedules.

As the blood tests and urine tests kept coming back negative we kept pointing towards the cortisol test which was due back on Monday the 25th.  We had an appointment scheduled that day which is also the day Houts was back.  Surprise, surprise, the cortisol levels were extremely high.  A normal child maxes out at 25 micrograms per deciliter in a very stressful situation and Isaac's was at 45. This brought us to the diagnosis that Isaac has Cushing Syndrome which, in layman's terms, means that his body was expressing too much cortisol.  Cushing's is rare (3 per million people/year) but it's especially rare in children.  The common cause of Cushing's is due to an excess amount of steroids given to a person to fight an infection.  The body then thinks those levels are normal and just keeps creating too much cortisol.  That wasn't the case with Isaac as he has had no history of steroids. Houts didn't confirm anything except that this was serious and most likely a tumor.  She had been on the phone all day with 2 doctors and we had an appointment with them the next morning at 10 am at Randall Children's Hospital (RCH).  One of her last sentences was that we'd be going into the "bloodborne pathogen and oncology unit" for our appointment in the morning.

10 am Tuesday.  We're in the office and meet Dr. Richards (pediatric oncologist #1) and Dr. Selva (pediatric endocronoligist #1).  It's at this time that we learn that most all of these cases stem from a tumor on the adrenal gland as that's where cortisol is secreted in the body.  If it's not there then the next place to look is the pituitary gland.  To understand this you need a quick biology lesson.

• The pituitary is controlled by the hypothalmus and sits in the brain.  The adrenal glands sit on top of each of the kidneys like little hats.
• The hypothalmus senses when the body needs more cortisol and directs the pituitary via CRH (corticotropin-releasing hormone) to release ACTH (adrenocorticotropic hormone).  
• This then travels down the bloodstream to the adrenal glands that start secreting cortisol.
• Cortisol completes a negative feedback loop in both the hypothalmus and the pituitary that shut off the production of CRH and ACTH.
• An important note is that if cortisol is really high in the body then normally ACTH is really low.  This is because of the negative feedback loop.  The cortisol has proteins that bind to the pituitary and hypothalmus and stop the production of more cortisol when the body gets the cortisol that's needed.
• If the tumor is on the pituitary then you typically see high levels of both ACTH and cortisol and it's actually an ACTH issue.  The tumor is causing the pituitary to release ACTH even when the cortisol is high.

While sitting with the doctor's they let us know that we had an MRI scheduled the next morning at 10 am.  Two MRI machines in the whole of the Emmanuel campus and we were on the schedule for the next morning (super key with kids because you can't eat for 12 hours.  My initial reaction was that we should wait for the ACTH levels to be back before we go in for an MRI but the doctor's were adamant we should look at the adrenal.  It's almost always a cancer of the adrenal gland and they can be malignant.  That cancer is called Adrenocortical Carcinoma (ACC) we learned and were told not to look it up as we weren't sure that's what it was.  The story of me curled up on the bathroom floor of the library is after disobeying and reading about that cancer.  Reading about a 30% survival rate of my child broke me deeply.  The thing that pulled me back was that there was a decent chance of it being a benign adenoma.

That night we pulled together everyone we could and asked for the wider community to join us in prayer.  During that time we asked for God to move mountains.  For this potential tumor on Isaac's adrenal gland to not be there or his pituitary.

The MRI came and went with much pacing and worrying and a really funny Minions movie playing in the background (a little googling shows that it was Despicable Me 2). We went home and waited a few hours for the phone call about the reading. This story is documented somewhere else, but it ended with Melissa and I in two completely different spots.  She had been hoping and thinking that we had a benign tumor on our hands.  I had been living with a thought of losing our son.  The truth was in the middle; that it was most likely a cancerous tumor on the kidney (a Wilm's Tumor to be exact) that we could beat.

This brings us to another truth about God orchestrating the whole situation.  If we had waited for the ACTH test to come back the doctor's would've gone straight to the brain with the MRI.  We happened to catch the random tumor on his kidney simply because it was close in proximity to what the doctor's thought what was going on.  The doctor's were wrong.  Melissa and I were wrong.  God was right.  If we'd had all the information at our fingertips we absolutely wouldn't have found it as quick.

The very next day we sat and talked to the Interim Director of Pediatric Surgery at OHSU who shared time at Randall's.  Dr. Jafri (pronounced Jofferey like the Game of Thrones character) was outstanding and informative and was on this quick.  We had a doctor and an operating room available for Tuesday the 3rd at 7:30 am.

I'll need to write more at some point about the stay in the hospital as my brain is getting tired and I still have a bit more to write.  But before I cut this off I have a few more things to write about God working miracles.

The first is that this whole situation was so incredibly rare.  Dr. Snyder (2nd pediatric endocronologist) figured out how I liked to read and learn and gave me the two case studies he'd been looking at that chronicled the same issues that Isaac has had.  The first is from 2008 and written in China, the second is from 1982 and written in Spain.  The 2008 article states, "Paranoplastic syndromes secondary to Wilm's tumor include...Cushing syndrome.  Paraneoplastic Cushing Syndrome is rare (from Wilm's tumor), with only 6 cases previously reported in English literature."

Wilm's tumors are common.  Cushing syndrome happens.  But for a Wilm's tumor to present Cushingoid symptoms is unheard of.  Dr. Selva told us that between Doernbecher and RHC there have been two cases of Cushing's from a tumor in Portland in the last 20 years (since she's been working).  And keep in mind that most of the Cushing's turn up as deadly adrenal carcinomas.  Second most common is the pituitary tumors.

Because Isaac presented with Cushingoid symptoms we knew something was up and we were able to look and find the tumor early.  Isaac's tumor was about 4 cm wide and his kidney and tumor combined weighed around 100 grams.  Very rarely are these tumors found that (combined with the kidney) weigh less than 550 grams and they almost always are found because they're so large and are palpated by the child's mom in the bath tub.  That's a tumor that grows in the back of the kidney, pushes through diaphragm, intestines, and everything else that's in the way in order to be felt.

Either this was an adrenal tumor that God moved to the kidney (I'm not ruling it out) or God gave us something so incredibly rare that presented symptoms that gave us the pathway to healing him quickly.  God worked miracles.

To avoid chemotherapy Isaac has to check 5 boxes:

1. Under 4 years old (check)
2. Tumor under 550 grams (check)
3. Favorable tumor cells and not anaplastic cells (check)
4. Heterozygous cells and not homozygous (unsure)
5. Stage 1 cancer (check)

Again, because this Cushings syndrome presented itself we will hopefully be not having to deal with chemo.

PHEW.  I'm rushing the end because I'm tired of writing.  You guys have lifted us up so well.  You're welcome to ask questions.  I like tackling these things as it helps me learn and understand well.  I'm sure a few of you doctors and nurses have read something that's incredibly wrong.  Point it out to me if you can.  I don't like to have my foot in my mouth and communicating correctly to the professionals helps us all learn how to care with Isaac better.

Our hearts are full of love for you all.  Thanks be to our miraculous Father who has lead us down this path.  We walked through the valley of the shadow of death and we have come out the other side.  To God alone be the glory.

p.s. I'm not proofreading this.  Deal with it.  😀