Marley was almost two years old when everything changed.
On April 29, 2014, I wrote about what our family had been going through.
In the month leading up to her diagnosis, I had taken her to the doctor four times.
At first, we were told that what we were seeing could be allergies.
Then things became much more frightening.
Her daycare became concerned when she appeared to have what looked like a seizure-like episode.
I rushed to get her.
Eventually, she was taken to the emergency room and transferred to Children's Mercy Hospital in Kansas City.
That was where we learned that Marley had nephrotic syndrome.
Suddenly, everything I thought I knew about taking care of my child changed.
She was swelling.
She was retaining fluid.
There were concerns about her blood pressure.
There were medications.
There were urine tests.
There was the constant monitoring of protein in her urine.
There was the terrifying reality of trying to understand a disease I had never expected my child to have.
At one point, fluid had to be extracted from her abdomen and tested because there was concern about infection.
I was trying to learn all of this while also being her mother.
There wasn't a manual for how to be calm when your two-year-old is sick.
There wasn't a button I could press to make myself stop being afraid.
I had to keep going because she needed me.
There were medications and instructions.
There were questions about how her body was responding to treatment.
When the steroids weren't producing the response the doctors hoped for, Marley eventually underwent a kidney biopsy on August 26, 2014.
In my September 2, 2014 entry, I wrote about what we learned.
The biopsy showed approximately three percent scarring, and the doctors were describing her condition as FSGS with Minimal Change Disease.
Suddenly, words I had never heard before were part of my daughter's life.
FSGS.
Minimal Change Disease.
Nephrotic syndrome.
Kidney biopsy.
Steroids.
Protein.
Treatment.
I had to learn.
We then faced a decision about treatment.
The doctors discussed Cytoxan, also known as cyclophosphamide, and tacrolimus.
Our family ultimately chose Cytoxan.
The months that followed were filled with medication, monitoring, fear, and trying to give a little girl as normal a childhood as possible under circumstances that were anything but normal.
The medication affected her.
There were days when she was tired.
There were restrictions because her immune system was suppressed.
There were times she couldn't simply go to family gatherings or be around people the way another child might.
She had to miss things.
And as her mother, I hated that.
I wanted her to be able to be a normal little girl.
I wanted her to go to birthday parties.
I wanted her to play.
I wanted her to be around her family.
I wanted her to stop being treated like the fragile little patient everyone was afraid to touch.
Eventually, we made the decision to let her attend a small family gathering.
It wasn't just about the gathering.
It was about letting Marley have a piece of childhood back.
During this same period, both of my girls were growing up.
Marley and McKinley were together.
They were sisters.
They were experiencing the same family, even though they were experiencing it in different ways.
I never want McKinley to disappear from this story simply because Marley's illness became such a major part of our lives.
She was there too.
She was part of the family.
She was part of the memories.
She was part of the reason I kept going.
My blog became a way of preserving all of this.
I wrote while we were living through it.
That matters because I wasn't looking backward yet.
I didn't know the ending.
I was writing about the fear while I was still afraid.
I was writing about the treatments while we were still doing them.
I was writing about the decisions while we were still making them.
In March 2015, I documented Marley approaching the end of six months of Cytoxan treatment.
On March 27, 2015, I wrote that it was her last day on Cytoxan.
After that came the steroid taper.
On April 17, 2015, I wrote that Marley was medication-free.
Her immune system still needed time to recover from treatment, and I continued watching her closely.
Then came April 29, 2015.
Exactly a year after the initial crisis, I wrote a retrospective account of what had happened.
I remembered getting ready for work.
I remembered noticing that Marley hadn't urinated overnight.
I remembered realizing that her clothes no longer fit properly because of the swelling.
I remembered the call from daycare.
I remembered rushing to get her.
And I remembered eventually taking her to Children's Mercy.
A year earlier, I had been terrified.
A year later, I could look back and see just how far she had come.
And eventually, the story changed again.
Marley went into remission.
Today, Marley is completely in remission.
She no longer needs routine visits with a kidney doctor. Unless something changes in the future or she develops another problem, she doesn't have to continue seeing a nephrologist.
After everything we had been through, that felt almost impossible to believe.
There had been a time when I couldn't look at my little girl without thinking about swelling, protein in her urine, medications, infections, hospital visits, and everything that could potentially go wrong.
I had learned how quickly an ordinary morning could turn into an emergency.
I had learned how frightening it was to watch your child become sick and not know why.
I had learned how to measure things I never imagined I would have to measure.
And then, slowly, things got better.
It seemed like her body had somehow corrected itself.
The little girl who had once been so sick was able to just be a little girl again.
Today, I look at Marley and I don't see the hospital bed first.
I don't see the medications first.
I don't see the kidney biopsy first.
I see my daughter.
And that is one of the happiest endings I have in this story.
I know that nephrotic syndrome can require monitoring and that future problems are always possible, so I don't want to write this as though anyone promised that it could never return.
But for now, Marley is well.
She is in remission.
And after everything she went through, I couldn't ask for a better outcome.
What began with a frightening diagnosis when she was barely two years old eventually became something else entirely.
A story about a little girl who got sick.
A mother who was terrified.
A family that had to learn how to cope.
And, eventually, a child who got her life back.
She wasn't just the sick little girl I was afraid of losing.
She became the girl who got better.
That is the part of her story I want her to remember.