Dark, scary, lonely places
We are overwhelmed with gratitude for anyone reading this. Thank you for carrying us this far, whether we know you or not, and for supporting us on this long road ahead.
Emma’s story is long and complicated, ridden with mystery. She’s received multiple rare diagnoses, all of which have spiritual parallels.
Someday we’ll share the long version. But for now, here’s what the last couple weeks have looked like.
We took Emma to urgent care on November 14, 2023 to treat an infection. They sent us directly to Seattle Children’s Hospital where we learned Emma was severely anemic.
“It’s not good. She’s going to the ICU.”
We placed two IVs, one for methylprednisolone and one for a blood transfusion. The ICU is a dark, scary, lonely place at 2am.
“Her body is attacking her blood.”
We didn’t sleep that night, and in the morning we learned during rounds that she had Evans Syndrome, where her body was attacking both her red blood cells and her platelets. (For the nerds: hemoglobin of 4.4 and platelet count of 30). We also met her new rheumatology and hematology team who welcomed us with open arms.
They had a plan. And a diagnosis.
Lupus. The very thing, the very specific thing, we have prayed Emma would not develop. Even before she was born we prayed this.
“3-year-olds don’t get lupus. Maybe there’s a genetic reason.”
Lupus, and other autoimmune diseases, run in Evan’s family. We’ve known this.
And now…Evans Syndrome? You’ve got to be kidding me…only the devil himself could conjure up something this cruel.
This was all happening quickly, on the heels of a day of fasting, where we were praying intently against any demonic strongholds that may have attached to Emma through Evan’s family history. Emma’s escalating fear of monsters were preventing her from sleeping or being alone. Now we’re fighting two battles — one spiritual, one physical. And her medical team was ON IT.
Despite these crushing diagnoses, we felt so at peace with her rheumatology team. We made a plan. We pivoted. We pivoted again.
It was a long week in the hospital of drugs we couldn’t pronounce, failed IVs at 3am, bottomless fettuccini alfredo, five roommates cycling through a shared hospital room, and watching her numbers slowly float up and down.
Which brings us to today…
The treatments are working! We saw great blood counts this week. Unfortunately good numbers came with lots of side effects. And her infection has been persistent. We ended up in the ER again due to some complications from the medication.
Pray with us:
God we know that you are…
All-knowing. You are unsurprised by this crisis.
A good Father. You love Emma more than we do.
A competent Healer. Darkness and disease must answer to your authority.
God we’re grateful for…
Coming home!
Great labs this week.
A rheumatology team that we love and trust.
Steroids that are clearing Emma’s skin rash, an unexpected highlight.
Friends and family from Washington, Oregon, and Idaho who came to visit us in the hospital.
God we ask that you…
Use this new antibiotic to fight off the infection in Emma’s body, and quickly.
Protect Emma’s body as she adjusts to all her new medications, with no more uncomfortable side effects.
Shield her organs from autoimmune attacks as she grows up. Keep her safe.
Clear her skin of Sweet’s Syndrome, rashes, and postinflammatory hyperpigmentation — permanently.
Go before her rheumatologists as they map out a lifelong treatment plan for Emma. Would remission and healing intersect it.
Be near to Emma’s heart, may she never know a day where she doesn’t understand how loved she is by you.
Even when I walk through the dark, scary, lonely places …
I won’t be afraid. Because my Shepherd knows where I am. He is here with me.
He keeps me safe. He rescues me. He makes me strong and brave.
