Tag: hospital journey

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Long Road to a Name

Brandi C

The Long Road to a Name

There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers—and more misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name.

But even more than the name…

This is about what we know for sure.

June 6, 2017 — Life Changed While He Slept

Hospital 1

  • Bloodwork and urine tests

  • Diagnosis 1: Strep

  • Sent home with antibiotics and the promise he’d be better in 10 days

June 7, 2017

Hospital 2

  • MRI, bloodwork, urine

  • Diagnosis 2: Acute Cerebellitis Ataxia

  • Viral, temporary, “he’ll be fine in two weeks”

June 8, 2017

Hospital 3

  • MRI, X-rays, ultrasounds, lumbar puncture, EEG, more labs

  • No diagnosis

  • Vague mention of a degenerative neurological disorder

  • No plan. No idea what to do next

June 14, 2017

Diagnosis 3: Opsoclonus Myoclonus Syndrome (OMS)

  • Began high-dose steroids and first dose of IVIG

  • One week later: chemo

  • Two weeks after that: more chemo

  • Monthly IVIG through April 2018

  • ACTH injections (Dec 28, 2017–Feb 27, 2018)

April 2018

Hospital 4

  • Confirming OMS diagnosis, fearful of degenerative neurological process

  • Repeated nearly all tests: MRI, X-rays, LP, ultrasound

Final Dx from Hospital 4: OMS

May 2018

Back to Hospital 3

  • New idea: Maybe not OMS, but Spinocerebellar Ataxia (SCA)

  • Degenerative. Genetic. No cure. No treatment.

  • He still wasn’t walking

June 2018 — A New Day

  • Unconventional treatment

  • Five days later:
    He. Was. Walking.
    On the beach.

“Now faith is confidence in what we hope for and assurance about what we do not see.”
— Hebrews 11:1

July 2018

Diagnosis 4:

February 2019 — Hospital 5 (UPMC Pittsburgh)

  • ATLD1 diagnosis debunked

  • Returned to third diagnosis: Opsoclonus Myoclonus Syndrome

  • Restarted treatment

And then… blah blah blah.

Because honestly? It’s been years of back and forth. Years of new guesses, new scans, new terms, new fears. So many months, so many procedures, so much medicine, and so much exhaustion—for him, for us.

What I Know for Sure

  1. He does not have Friedrich’s Ataxia.

  2. He does not have a mutation on MRE11A (ATLD1).

  3. I finally got a straight answer from Dr. Thakkar in Pittsburgh.

  4. We have good days and bad days.

  5. I am an expert on my son, and I will not waver just to satisfy a doctor’s pride.

  6. He is cute.

  7. Best. Smile. Ever.

  8. He is also a turd.

  9. I will not compromise my faith.

  10. God. Is. Bigger.

“He is before all things, and in Him all things hold together.”
— Colossians 1:17

I’m tired of man telling me what this is or isn’t when they don’t even know. These doctors—most of them—have never even seen this. They are learning on him. And we’re the ones who carry the cost of that learning.

But I am not bitter.

I am anchored.

“But the Lord stood with me and gave me strength…”
— 2 Timothy 4:17a

Because we don’t walk alone. We never have.

💛 Heartbeat Moment

This isn’t just about a diagnosis. It’s about a child whose life changed in a moment, and a family who refused to let go of faith. Standing on the truth, even when no one else sees it yet. It’s about choosing joy—again and again—and declaring that our God is still good.

H is more than a list of symptoms.

He’s more than a diagnosis.

He is living proof that God. Is. Bigger.

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

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What Happens When Your Pitcher of Life Crashes

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Shaking Doesn’t Stop

Brandi C

The Shaking Doesn’t Stop

The Shaking Doesn’t Stop

The Second ER – Misdiagnosis #2

We made arrangements for the kids, packed bags, and headed 2.5 hours to Nashville. We arrived at Vanderbilt Children’s Hospital in the middle of the night. In the end, The Shaking Doesn’t Stop.

They admitted us briefly but said no MRI could be done until morning.

They ran bloodwork and later completed an MRI. I asked for a spinal tap or spinal MRI—they declined. “Not necessary,” they said.

While we waited, new symptoms began to show up. H stiffened his legs like a toy soldier. He shook all over. He couldn’t sit up without help.

The MRI showed nothing. We were told it was Acute Cerebellitis Ataxia, likely caused by a virus—even though he had never been sick.

“Is anyone among you sick? Let them call the elders of the church to pray over them…”
— James 5:14a (NIV)

We were told we must have just not noticed when he was sick. I was stunned.

He is three.
A blind, deaf, mute would know when a three-year-old is sick.

We were told to return if he had a grand mal seizure or if we feared for his life.

Discharged – But Not Done

What I’ll never forget is how flippantly the doctors treated us—how dismissive they were. But what I will remember even more clearly is the nurse who looked me in the eyes and said:

“You don’t have to leave. I can’t believe they’re discharging you, given the state he’s in.”

We knew then—we needed to keep pushing.

“Let us not grow weary of doing good, for in due season we will reap, if we do not give up.”
— Galatians 6:9 (ESV)

The Third ER – Misdiagnosis #3

Still unsettled, I packed up again and drove 3.5 hours to Louisville. I wanted one thing: confirmation.

If two doctors gave me the same diagnosis, I’d accept it and wait.

Big Daddy stayed home with the others. I was hopeful that this time, we’d get real answers.

But even when the world throws labels and shrugs its shoulders, a mother’s gut—and the Holy Spirit—won’t be quieted.

Heartbeat Moment: When the Shaking Begins

That June evening, I had watched H giggle and shout with joy at a ball game. One day later, I watched him crumble under the weight of something we couldn’t name. But in between the popcorn and the panic, I felt something deeper growing—a fire, a knowing.

We weren’t just walking through a medical crisis.

We were walking through holy ground.

And even when we didn’t know the name of what we were fighting,
God did.

“Before they call I will answer; while they are still speaking I will hear.”
— Isaiah 65:24 (NIV)

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

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Courage in EnCOURAGE

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

Let Us Marinate

Brandi C

Let Us Marinate

Let Us Marinate

 

Let Us Marinate on the picture. Open it up, enlarge it and just look. This canvas is a 16×20, and there is NO room left to put ANY type of bead. Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Bead of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads. We kept them, for the longest time, on strings. The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes that were overflowing. So, one day, I thought…let’s see what I can come up with. What I ignored was the WEIGHT of this thing. There is no way a nail can hold this thing up. We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc. that the child has done. I will say, H did not earn any beads for the first 3 years of his disease. This was because BOC was a program for terminally ill children or children with cancer. I believe there was also, at his hospital, a cardiac program. When we moved hospitals, the requirements changed. Now, BOC includes those children/young adults with life-altering conditions. So, these are the beads he has earned in the last 2 years. Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osteotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement.

Tortoise (too many to count)

Procedures include Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injections, aspirations, and others.

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visits (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection. These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment-related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other.

Fish (60)

Transfer units or facilities, long-distance travel for care, “upstream battle.”

Transplant Glass Selection (24)

Transplant

Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017, had WAY more procedures, pokes, traveling, transplants, and all than he has had in the last 2 years. This canvas is only the last 2 years of the 5 he has had since he has gotten sick.

Resiliency.

He is fantastic, brilliant, strong, capable, and able, and now he is HEALED. I never thought I would say that word concerning H, but here we are saying it loud and proud for all to hear. God is good. I didn’t think He was good. Honestly, I wondered if He even existed sometimes. Yet, I had warriors all around us that held up my arms and faithfully prayed for my son. They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed…Yet he did not waver through unbelief regarding the promise of God but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had the power to do what he had promised.

Take that OMS!