Emerson Strong

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Emerson Strong We started this fight and we will finish it. We will climb this mountain, we will conquer it and we will be victorious. We will be, Emerson Strong.

After 18 months of intensive frontline treatment- including chemo, over 25 hours in the OR, radiation, isolated MIBG the...
02/01/2025

After 18 months of intensive frontline treatment- including chemo, over 25 hours in the OR, radiation, isolated MIBG therapy, two bone marrow transplants, and immunotherapy—Emerson transitioned to a two-year maintenance phase. During this period, she swallowed 6,480 tablets of DFMO- a trial medication turned FDA approved during our time on it, aimed at preventing the recurrence of neuroblastoma.

As she takes her final dose, I find myself inundated in a maelstrom of emotions: profound elation tethered by deep-seated apprehension. For two years, DFMO has served as our protective shield against the resurfacing of neuroblastoma. Now, stepping into life without this safeguard, we face uncertainty. Something you think we would be comfortable with by now. 🥴

The adage “better the devil you know than the devil you don’t” resonates, yet in this context, its wisdom feels ambiguous. I’d do almost anything before having to face that devil again…

So as we step into this uncharted chapter—life “after treatment”—I find myself eschewing the notion of returning to a pre-cancer “normal.” The life that existed before Emerson’s cancer has become a distant memory as my perspective has been irrevocably transformed since then.

Though I know I’m not the only one with a heart of tempered steel here. This sentiment is true for many of us and the different fires we’ve been refined by. In the context of my own world, the words by Stuart Scott feel like my own: “You beat cancer by how you live, why you live, and in the manner in which you live.” Our lives are not defined by a return to the past, but by how we choose to move forward, enriched by the new perspectives and insights we’ve collected along the way.. and with that, no matter what the future holds, I’ll always feel like we “beat” cancer.

So here’s to 2025- where we will continue to scan, draw labs and keep a close eye on our girl, but we won’t be tied down by any more treatments or medications. Though the ground here feels a little unstable, I trust the lamp that lights my path.

Thank you to all of you, who have been pillars of support and strength for us. Without your prayers, your love and your generosity the weight of cancer would have felt impossible to bear. Thank you for carrying it alongside us for these last 3.5 years. 💛

Here in 2025, may we all look to heavenly and eternal shields of protection before earthly and temporal ones. May we trust them and believe in their truth no matter the fire before us.

In this next season of time and matter under heaven, I pray the weight of whatever has held you in 2024 slowly releases you into the perfect timing of what 2025 has waiting for you. May we continue (as you have all so graciously done)- to bring heaven here, while we’re here.. one step, one day at a time ✨

Sharing here, December then and December now… both countless little and great steps in between these photos. Some days they were only to the coffee pot and others we made it many miles. Wherever you’re at, just keep taking steps.. one foot, one day at a time. 💛

Happy New Year from our grateful family to yours.
✨🎗️💛

November 2024: Emerson is NED after her 6 month scans, making today 3 years since the first time we heard and felt the s...
22/11/2024

November 2024: Emerson is NED after her 6 month scans, making today 3 years since the first time we heard and felt the significance of those three letters. The first time we heard them, we were still staring down the barrel of a year long crawl through two bone marrow transplants, radiation and immunotherapy. Today we hear them on a steady walk through one more month of maintenance treatment.
🎗️💛

This side of cancer is interesting. elusive to articulate. it’s intricate and tangled. We live in awe of our daughter’s resilience, both apprehensive and hopeful for her future, grateful for her life, yet also carry weight knowing others are facing different realities.

To our families still in battle and to those grieving profound losses—we see you, we honor you, and we hold space for the unimaginable that cancer leaves in its wake. Your stories are forever woven into ours.

My breath here is wound tightly together by both pain and promise as I struggle to feel one without yielding to the other. This uninvited kind of knowing comes as a blessing though, for I see the world on this side of cancer through a wider and deeper lense than I did before cancer. I see a terrible yet temporary, beautiful, wonderful and fragile now.

We walk this “now” with arms full—of gratitude, of joy, of grief and of uncertainty —understanding that all are inseparable parts of our story .

On my knees in gratitude and head bowed in prayer, I thank you Lord for Emersons clear scans and I ask of you, as you call us to - to reveal your promise to those facing painful sceneries - and for you to do it in a way so radical that they would know, it could have only come from you. 💛

whatever your now holds, may you find glimmers and gold within it, Em Strong family. ✨

“I don’t think of all the misery, but of the beauty that remains.” Anne Frank

nothing has ever taken my breath away quite like the times I thought you were taking your last. you were 4. with stage 4...
22/08/2024

nothing has ever taken my breath away quite like the times I thought you were taking your last.

you were 4.
with stage 4 cancer and a 40% chance of surviving.
my four walls corroded, then collapsed.

before we knew it, you were 5.
5 rounds of chemo behind us and 50 hours of you in a room I could only be in for 5 minutes at a time.
all five senses engaged.

I could see you struggling,
smell the poison we had to give you,
hear you screaming,
taste the fear and,
I felt you fighting.

In the ring you turned six. And like a sixth sense, you told me you knew His angels guarded you. 16 months of treatment and 6 months of living at Seattle Children’s in the rear view. and like a reflection is created in a mirror- light waves bounced back, changed direction and returned to the medium from which they came.

and the medium was you.

then you turned 7.
seven felt like heaven -
“on earth as it is.”
eternal leading temporal…

and today you are 8.
8 is great.
8 is a gift beyond my wildest dreams and most fervent prayer.

happy birthday, Emerson.
we will never stop celebrating the light that is your presence.

Life lately 🎗️💛We moved to what they call “hill country” Texas in January- and it’s just as it sounds- picturesque and b...
10/05/2024

Life lately 🎗️💛

We moved to what they call “hill country” Texas in January- and it’s just as it sounds- picturesque and beautiful country adorned with rolling hills, cattle ranches and oak trees. Even better than the scenery though - have been the people. The people of Texas have been some of the warmest, most welcoming people we’ve ever met. Southern hospitality is real y’all- and it’s strong.

It’s been strange, however - to be walking around “out here” on the other side of that raging sea of cancer - shoreline now. My olfactory senses- still so familiar with the scent and sting of the salt water. The water still washes up to my toes now again, but overtime, I’ve learned to lift my feet and shake the water droplets off. Yet sometimes, I fall tired to shaking the cold waves off, my feet begin to numb and so I’ll sit down on the shoreline. I so badly want to rest there- so satan wants me too- but every time I do, the water covers so much more than just my toes … the salty waves of cancer enter my lungs and they waterboard me.

So I stand back up. I wipe the water from my face, shake the sand from my legs and keep walking. We keep living life on the tightrope between the two realities we live in. A beautiful gift to live in truth about fragility - a terrible, yet wonderful now.

3 years ago, every little piece and imperceptible particle of me shattered.

3 years ago, we heard, “there’s a mass inside your daughter. It’s cancer- stage 4 and we cannot operate on it.”

Today we heard, “there is no cancer inside your daughter. there is no evidence of disease.”

This is 2.5 years NED. A miracle and milestone not lost on one single cell of me.

And like a peck of warm sunshine on my cheek, I feel God whispering to me, “go on now, go play in that sand”. ✨

“I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living.” Psalm 27:13

Two years ago, we made the most daunting decision of our lives. With both fear of loss and faith in a great God, we made...
14/02/2024

Two years ago, we made the most daunting decision of our lives. With both fear of loss and faith in a great God, we made a decision to put our daughter through a second stem cell transplant- after the first one nearly took her life. Caught between the devil and the deep blue, we had two options: put our 5 year old through a second transplant- knowing she had been so severely weakened by the first that the possibility of her not surviving was high- or to opt out of a second transplant and risk a different kind of evil- one of a higher probability for relapse - for which we knew no standard treatment existed for.

As this cruel decision was released into our hands, we fell to our knees and pleaded for a different story… with blurred cogency and our vigor in the fight running thin… it was a nightmare we couldn’t wake up from. dammed if we did, damned if we didn’t.

It came down to knowing that at the end of the day, whatever the outcome was going to be- with so little in our control, we had to be able to lay our heads down at night, knowing we had done everything we could and give our daughter to God; for here or for heaven.

So on February 13th, 2022, with our weapons drawn, shaky voices and weary hearts, we said, “yes”- Yes to a second transplant, yes to trying everything we had in our arsenal and yes to both possibilities… of loss or of life.

And though we were faced with this decision in a more forceful manner than most, the truth is- we’re all presented with a similar decision- albeit under different circumstances, every. single. day.

So let this be your reminder that while you’re here, don’t forget that you ARE here. make it your call to be in as many of the moments that you can- lean in. be present. share joy. bend the rule. don’t sweat the small stuff. ask questions. make the time.- and do it now so you don’t look back and realize the fleeting moments you missed were the precious moments that mattered the most.

The two greatest days of your life are the day you are born and the day you discover why…

and my dear, Emerson, we can’t wait to find out your why. I don’t know why you got cancer and I don’t know why you had to go through what you did just to be here… I don’t know why the sequela of cancer had to be so harsh and I don’t know why we still fight battles for your life… but I know there is hope in your story. I trust there are tales of redeeming truth behind your cancer … and yet, I’m acutely aware that we may never find out exactly “why” or what they are, this side of heaven. So we’ll just be here for every moment now, until the day we may find out “why” and everyday thereafter.

“Yet you do not know what your life will be like tomorrow. For you are just a v***r that appears for a little while, and then vanishes away.”
James 4:14

Happy 2 year Transplant day, Emerson. We love you and are forever grateful for every breath you take.

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