Meet Nash

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Diagnosis: Hepatoblastoma

Last Update: 4/22/22

Meet Nash - an almost 2-year-old (his birthday is in July). Nash is about action - priding himself as a force to be reckoned with. Nash is an avid gardener (eating directly from and uprooting our backyard vegetable planter on the regular), fellow Ninja Warrior (think American Ninja Warrior for kids), and partner-in-crime to his older brother, Knox Ryder. He's a love bug and has been known to have a great sense of character - showing affection through an embrace that pulses through your entire being. 

Friday - 4.15.22

Nash wakes up at 4am and heads into our room - super uncharacteristic for him given he always sleeps until at least 6:30am and isn't one to get out of his crib.
An early wake-up means an early diaper change. As funny as it may sound, we were hoping for poop since he hadn't gone in the last five days - no dice.

Most parents know a 4am diaper change rarely happens in the light but rather in blackout darkness. Once you have a kid or two you learn to change diapers in the dark, on the side of the road, or maybe in the middle of a restaurant (not advised but we've all seen it and it's definitely a two-person job). Although, something was blatantly different this time around. There was a huge knot in Nash's side. And to think we realized it in complete darkness but hadn't seen it the day before should alarm you too. We both knew this was odd and Kendyll's Mom-senses tingled...HARD.

A quick trip to the pediatrician was followed by a quick recommendation to take immediate action - get an x-ray or ultrasound, ASAP. The fastest place to do it? The ER. We head straight there - Kendyll with Nash. Myself with Knox (our oldest, Nash's 3yo brother). "Fast" is an interesting word when you wait 6.5 hours in an emergency waiting room. 
Once we made it passed the waiting room, tests and information came quick BUT bad news compiled even quicker. Two enemas. X-Ray. Ultrasound. IV (not easy for a kid not even two years old yet). Blood Test. CT Scan.

Then it's wait, wait, wait, wait, for results. Oh, and Nash hasn't eaten or drank since the pediatrician appointment (roughly 12 hours at this point). It's seemingly impossible to sneak snacks when your kids' ears perk up at the sound of a wrapper or twist/snap of an opening water bottle.

Needless to say, Kendyll and I are worried past the point of hunger or thirst, and are just trying to contain an ever-running mind. We get word that Kendyll's father's (currently on hospice) health is declining rapidly.

 

Saturday - 4.16.22

The waiting continued for CT results and blood tests into Saturday morning. Honestly unsure how long we waited - time meshed together by that point. One thing I'd personally guarantee though, hospital benches are not comfortable/suitable areas for sleep. I'd highly recommend against it. The results are in.

His CT scan shows three large tumors (we find out later there are actually four via MRI). Blood results predict Hepatoblastoma (cancer within the liver).

Not anything any human being would ever want or expect to hear. How could 75% of our 21-month-old son's liver be covered in cancerous tumors?!

Our hearts hit the floor, tears fall uncontrollably. We're admitted to the hospital - still with no real understanding of what any of this information means. As you can imagine, it takes quite a while to digest such information. 
Knox (our oldest) is with grandparents, further supported by brothers, sisters, aunts, uncles, cousins, fiances, and countless friends (thank God for a solid support system). 

We get news that Kendyll's father has passed away (from prostate and bladder cancer). Our hearts swell. I'm still amazed by my wife's poise and ability to handle such a series of events. She is strong and unshakable yet soft and soothing, the perfect mother to our children, and an absolute rock to our household. She is perfect. Kendyll leaves to say goodbye to her father and be with her family.

Sunday (Easter) - 4.17.22

What is sleep anyway? At this point, Kendyll and I have both forgotten. You think we’d be seasoned vets with a 3yo and a toddler about to be 2 but this is a different type of tired. This is stressed tired, mind racing tired, no appetite tired. Not exactly what we had in mind for Easter Morning. 

Easter Sunday holds a liver biopsy and MRI, both absolutely crucial to determining a diagnosis and go-forward plan. With each comes an unexpected but welcoming interaction. Our nurse? An old friend of mine from my freshman year at NAU. Call it what you want - a coincidence? right place right time? Nope. That's God.

Both procedures go as planned. We await the results. In the meantime, our family gathers to create an unforgettable Easter. As the afternoon stretches along, our 20+ family members meet at the grass lot below Nash's 7th-floor hospital window. This is a time for prayer, comforting, and joined struggle. We adopt the anthem - I AM STRONG. These words are flexed from the 7th-floor poster on Nash's outward-facing window and are built from Joshua 1:9. Nash shows us his muscles while standing on the windowsill. We flex back.

 

Monday - 4.18.22

We wait for results and a go-forward plan. The doctors work diligently to keep us in the loop and manage expectations. We know we are in excellent hands yet somehow find peace in the worst of possibilities. You may not be like Kendyll or I but we prefer to plan for the worst of outcomes. Again, we find peace in the potential loss of our littlest man. It's only up from here. 

 

Tuesday - 4.19.22

Test results confirm the doctor's suspicions - Hepatoblastoma. We learn the anticipated three tumors are actually four. Proactively, the docs prepare for port placement and partnered hearing test. Yet again, we see God through the unexpected familiar faces of friends in both the pre-op and post-op procedures. A coincidence? Right place right time? Nope. That's God.

Nash is sore - from the biopsy and now the port placement. Nash's current but temporary limitations become very aware to us. Simply put, Nash will not be able to be the same kid he was four days ago. No more digging in the backyard garden - dirt isn't necessarily cancer friendly. Ninja Warrior takes place in a gym visited by hundreds of kids each week - hard pass. Yes, he'll always be Knox's partner-in-crime but their lively action-packed relationship will be on a strict watch for the foreseeable future. No sharing food/drinks, no wrestling (not sure how we can truly regulate that), stay off the community playground, stay out of the pool, church will be attended digitally (no large groups), plus hundreds of other things you simply take for granted.

Even with this more than welcomed journey, a couple of things are for sure. We have been presented with treatment options and are confident in our treatment decision. We have incredible doctors (shoutout to Dr. Francis Eshun and squad). Our support system is rock solid. Nash is a fighter with a stubbornness unfazed by just about anything. This is going to be expensive.

But most of all - GOD'S GOT US AND NASH IS STRONG.  

 

This journey is no secret - this is real life. Come ride with us. 

To purchase an I AM STRONG shirt supporting Nash, please click the link below

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