From the moment I discovered I was pregnant with Nathan I was filled with anxiety—after I had my first son, Jeffrey, I miscarried.  As I carried Nathan to full term, little did I know that the sense of relief when the doctor handed me a healthy, beautiful baby boy on July 16, 2013, was only temporary, and new fears were established.

   When Jeffrey was three and Nathan 21 months, I gave birth to my last baby, Natalie.  My family was complete.  I always wanted four children, three were beautiful and healthy, and one I never got to meet.  

    I sit here now, with two living children and wonder how we ended up here.  

‘Nathan died January 6, 2022 after we were forced to fight for his life for 6 years.  

How was this my reality?  

   Natalie only knows life as a cancer family, and Jeffrey has very few memories without having a sick brother, and absent parents. Nathan was two years old when diagnosed.  It was a mess from day one.  Doctors dismissed my concerns for months. I was a young mom with three very young children. His symptoms were believed to be in my head because he was “too happy to be sick.” Then when the mass was finally discovered, biopsies were botched, and lung metastases were ignored.  These lung nodules, left untreated, ultimately taking over his lungs.  This was considered a relapse and occurred after weeks of chemotherapy, a radical nephrectomy [full kidney removal] and radiation to Nathan’s abdomen.  He spent his third birthday on high dose chemotherapy, receiving lung radiation, and suffering from repeat pneumothoraxs [collapsed lungs], one of which led to a helicopter ride. That was a tension pneumo which means when his lung collapsed his heart was pushed out of place due to tension and pressure that built up in his lungs.  

That first year he spent over 100 nights inpatient, and even more in emergency rooms and clinics.  

   On February 16, 2017, almost a year after diagnosis, he was sent home with the only option provided being Hospice. This was the first of many times Hospice was to be our next step.  I watched my three year old running through the kitchen with his siblings while the doctor was telling me we are out of options. We immediately transferred his care and he had two years in remission.

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They were the best two years of my life.

I know I will never be able to obtain that level of happiness again while walking this Earth.  

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Nathan relapsed to both lungs in May 2019.  In total, we consulted with five major hospitals and spent time at four of them. After exhausting all known treatment plans within that first year he had multiple other surgeries, proton radiation, and what is referred to as “salvage” chemotherapy.

Curative was a word no longer used. 

   He was treated with  inhibitors, participated in Phase I Trials, and was Patient Number One for an experimental drug.  We paid out of pocket to send samples across the country, some even went to Europe.  We received support from the Vatican, praying to Blessed Carlos that Nathan would be the miracle he needed for Sainthood.  I tried to move Heaven and Earth to save my baby. It might sound like a lot because it was.  It was also what Nathan wanted.  He went to school, played baseball, soccer and basketball.  He had over twenty chest tubes and lung surgeries but that literally did not slow him down—he could foot race with the best of them.  Nathan wanted to live.  There were only a handful of times towards the end that his beautiful smile faded, but it always came right back even as he took his last breath.  

At diagnosis we were told Wilm’s tumor had a 96% chance of survival—we were told to be thankful he just has Wilm’s because it’s allegedly easy to beat.  

 Tell that to the broken pieces left behind.  

Tell that to those who publish the data.

Nathan is included in the 96% survival rate because he was alive four years past his diagnosis date. 

   He’s not alone, I’ve lost track of how many children died after being considered a success, all considered “survivors.”  If we don’t have accurate data, no one knows how severe the problem is. 

If we close our eyes to it, nothing will change.  Children are dying, families are broken, futures are lost. 

It has been over two years since I held my baby, since I heard his voice, Since I’ve seen his little smirk and that twinkle in his eyes. He is forever eight years old.  

   My fight hasn’t stopped. Everyday I fight to get out of bed.  I fight to make sure Jeffrey and Natalie are doing ok.  You’re not supposed to talk to your son or brother in heaven.  You’re supposed to watch him grow. Natalie will turn nine soon, officially outliving her brother, her best friend.  Jeffrey and Natalie have spent the last two years trying to connect through the ages because Nathan was always their in-between, the gap between their ages.  Jeffrey is trying to figure out who he is without his best friend, without the one he was supposed to protect. My husband, Jeff, and I were supposed to protect Nathan, just like we were supposed to protect Jeffrey and Natalie.

~Did we fail to protect our children?

~Did we fail if the playing field wasn’t level? If we went to war without the proper tools to succeed?

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That is what makes Elevate so important.  We need help in an uphill battle. 

We want birthdays, holidays, graduations. 

We want our children to grow up and we cannot do it alone.