Greater Than Series: Ethen's Fight

A note from Jen: In the Greater Than Series, you’ll be meeting some of my favorite friends and their inspiring stories. The idea behind the phrase “Greater > Than” is that we are all greater than the challenges life presents us, and we can get through them!

Today, meet my fellow Wolfpacker, Chrsitie Baucom. Christie and I met as freshmen at N.C. State, where we’d walk over to BUS 200 together - ah, such simpler times! Over the years, we’ve been able to stay in touch (thank you, social media), and last year she was able to be an ongoing encourager for me during my cancer treatment because her family was slowly coming out of their own battle.

I’ll let Christie share their story…

“The ultrasound showed that your son has a large mass near his liver.”

These were the words that changed our lives sometime between 2 a.m. and 4 a.m. on March 31 st , 2017.

I will never forget the setting. We were in a large private exam room in the ER right outside of the nurses’ station, which meant the night was a mix of voices and hustle interchanged with long periods of silence.

But at that moment, all that I can remember is the face of the resident as he shared the news with us that something indeed was wrong with our 13-month-old son. I remember actually feeling worse for him in that moment than I did for myself as he nervously shared the bad news.

After initial meetings in the wee hours of the morning, I sat in silence holding my finally sleeping child while my husband Brian attempted to catch a nap on a make-shift bed of two hard chairs.

We had brought Ethen into the ER around 10-11 p.m. the night before, after Brian had noticed that his abdomen was slightly lop-sided while getting him changed for bed. Within twelve hours, we found ourselves on the 11th floor of the children’s hospital – the hematology and oncology floor – a place that would soon become our second home.

That afternoon, after a CT scan, we met Ethen’s oncologist (Dr. O) and heard for the first time the words that were already crossing our minds:

“We believe the mass is most likely malignant, and we believe it may be one of two types of cancer.”

I either don’t fully remember or cannot sufficiently describe the emotions of those hours – a mix of sleep-deprivation, shock, numbness, and fierce protectiveness for my son. Dr. O had drawn a picture of what the tumor looked like in Ethen’s abdominal cavity, and it was massive. Later that evening I had to ask Brian to erase it, not because I wanted to pretend it was not there; rather, my mom heart could not handle to hold my son and see a picture of the beast that was causing him so much pain.

The Diagnosis

After almost a week of multiple tests, scans and biopsies, we were given Ethen’s official diagnosis and treatment plan on April 6, 2017.

Ethen was diagnosed with Stage 4 High Risk Neuroblastoma. Neuroblastoma is a cancer that develops from immature nerve cells, most often forming around the adrenal glands. It is believed that neuroblastoma usually begins in utero and thus most commonly affects children under the age of 5. Being categorized as Stage 4 High Risk meant that his tumor was not only growing in his abdomen and up his spine toward his chest cavity, but the cancer had metastasized to a lymph node in his neck, above his right eye, and on his left femur.

The only good news that day was that it had not yet reached his bone marrow – everything else about his tumor fell into the “poor” categories.

The official diagnosis conversation was heavy and saddening, but by the time we heard those words we were ready for action. Ethen had been in increasingly significant pain for at least a month with no answers. Once we had an answer, albeit a horrific and terrifying one, we were ready to fight for and with our child.

Treatment

That day and for all the days following, we tried to take each treatment, each side effect, each decision moment-by-moment without carrying the weight of the “what-ifs” on our shoulders. Ethen began his first round of chemotherapy that day and we stayed in the hospital for about a month as his little body struggled under both the burden of the tumor and the effects of the chemotherapy working to kill it.

After the first round of chemo, Ethen endured 4 more rounds of chemo, stem cell collection, tumor resection surgery, high-dose chemotherapy with a stem cell transplant, radiation, and the beginning of six months of immunotherapy.

In the course of over a year of intense treatment, we spent almost half of it inpatient, and this does not include the hours and days spent at clinic visits and outpatient radiation.

Other than watching the torture that Ethen endured, the hardest part of treatment was our separation as family. Ethen is actually the youngest of our three children, and his big brother and big sister were 5 ½ and 3 at the time of his diagnosis. They are the silent warriors that many often don’t see, the ones who lost time with their parents and brother, the ones who learned a vocabulary and fears that should not exist in childhood, the ones who still bear invisible scars and anxieties to this day. But they are also children who love and protect their brother fiercely, who appreciate more deeply even just the “presence” of each other, and who are quick to see the hurt of others in suffering.

Nine months into treatment we faced the worst weeks of our lives – and pain beyond what “diagnosis day” could ever bring.

At the beginning of Ethen’s third round of immunotherapy, his body had an extreme inflammatory response to the antibody drug which resulted in respiratory failure. He spent the next two weeks sedated and intubated in the PICU. It has been over 18 months since the day that we heard “the next few hours are critical” and the memory still sends a searing pain through my body. It was the first time in the treatment when I doubted if his body actually could or would “bounce back”. There were days of wondering if he was telling us he was done fighting and if we would be forced to say goodbye. When your child (or anyone you love) is diagnosed with cancer, you are ever-aware that goodbye could be a possibility. But I think most of the pain that still resides in our hearts are from moments that we stood and slept and cried in a room where that possibility met us even more closely.

So what does life look like for us now?

Thankfully, we were able to walk out of the hospital with our child, and we remember the treasure that he is every day.

Ethen’s scans continue to show “no evidence of disease” now over a year post-treatment. He takes two pills twice a day as part of a clinical trial to help prevent relapse. He fights daily to get stronger and overcome the physical implications of intense treatment and side effects of adult drugs “tailored” for children.

I wish we could say that we live anxiety-free and confident of his future. But each little sickness, each prolonged bought of fatigue, and every bruise or moment of pained walking comingles with doubt and fear of relapse that dwells in the shadows of our minds. We cannot return to the framework of life in which we functioned before cancer entered our worlds in the body of our youngest child. We have heard the ugly words, we have watched our child endure what felt like torture in order to save him, we have flashbacks and moments of panic still from moments when we watched his body fail. There is pain that seems to persistently reside an inch below the surface.

But even though childhood cancer brings pain and fear and brokenness in many forms, our story has not been hopeless – and this is not just because we have a child who has survived. There was joy every day even in the worst of it.

For us, it often came in the smiles and laughter of our children. Or in the personal care of Ethen’s medical team who became like family. And even now, the intensity of pain we endured only seems to help us see beauty and feel joy more immensely.

How we did it

Many people will say to us, “I don’t know how you did it.” Often I will respond, “We did what we had to do and were given strength for each day.”

But I think the truest answer to ”how” we did it is that we did not do it alone. Our faith in the Lord has been the foundation of our lives for many years now, but as we went through this suffering with our child, Jesus truly was a “sure and steadfast anchor of the soul.” The Lord held us fast and strengthened us when we felt like we had nothing in ourselves.

The strength was also provided to us through the care and help of others. Family stepped in to care for our older children when we were at the hospital, friends spent hours in the car to come sit with us, people around the world prayed for us, ladies came to clean our house before we would return home. We were sent cards, gift baskets, money, and encouragement from old friends, organizations and many who had never met us. Churches organized fundraisers for us so that financial stresses were not a burden and provided meals when we were in the hospital and at home so we could focus on the care of our children and time together. We saw the sacrifices others made for us and the care they had for our son, and we felt strengthened and less alone.

Now being a couple years past diagnosis, I have thought often on what was most helpful to us as others supported us in the fight. If I could summarize my thoughts on what to say to someone who wants to support a cancer parent or patient, I would say this:

Be there – be there often, be there patiently, be there for the long-haul, be there when the parent feels like others have moved on, be there to meet needs as you see and hear them. And never stop fighting when the fight “seems” over.

In my interactions with other cancer moms, many of us actually struggle more emotionally when our child is no longer in intense treatment – our roles change and survival mode fades into anxiety mode. Stay by that parent’s side, continue to be there to listen, be patient when she is paranoid or anxious, continue to step in alongside her to fight for better for her child or other children who will be diagnosed afterwards, help her know that she and her child still matter when the hundreds to thousands of “followers” are no longer checking in everyday.

A parent may not know how to best say thank you, but we are grateful often beyond expression and we are able to fight because of those who do it with us. Each person who makes any effort to care is able to shine light into darkness.