Friday, June 3 was my first day of summer break. It was to be the beginning of three blissful months with my baby boy all to myself during the day. We kicked off our break with a beautiful morning walk and a lunch date with Dad, followed by an afternoon eye doctor appointment for Easton. Unfortunately, our little taste of summer came to an abrupt end that afternoon.
A little background: Easton was breech during my pregnancy, so his head was packed at an odd angle inside of me. He was born with a condition called torticollis, or weak neck muscles. So, he often tilted his head to the right. When he was two months old, we began weekly physical therapy to stretch and strengthen these muscles and correct the tilt. By about 8 months old, our amazing physical therapist, Sarah, felt that he wasn’t making the gains she’d expect after consistent therapy. She said that his head tilt could resolve once he started crawling and activating more neck muscles, but that another route could be to check vision to make sure the tilt wasn’t to compensate for some sort of visual midline issue. I scheduled the ophthalmologist appointment for the first day of summer so that it wouldn’t interfere with work. Throughout the month of May, though, Easton started crawling and his tilt improved dramatically. Since it was clear that vision was not a reason for the tilt at this point, I almost cancelled our appointment with the ophthalmologist to avoid another co-pay. However, since we had waited a month for the appointment, I went ahead and took him in.
This is when our journey began. The ophthalmologist said that although he saw nothing to cause the head tilt, he had a “coincidental and very fortunate” finding: a bump on Easton’s retina. He scheduled an appointment with a retina specialist for the following week. My heart dropped, but I was also so caught off guard that I didn’t even comprehend what it could mean. He said it could be scar tissue, something left over from an infection, or something “not so good.” I didn’t even ask him to elaborate. I knew what he meant, but I was in temporary denial and didn’t want to press him for more information. I only asked if it was affecting his vision, and he said yes, due to the location of the bump right in the way of his central vision. I couldn’t believe it – Easton laughs at us when we make faces at him from across the room, he plays with toys, he looks at picture books. The doctor said babies compensate very well for poor vision, so it is sometimes hard to tell that there’s an issue. This is an important reason to look for other symptoms of retinoblastoma, because we obviously can’t rely on the infants and small children that it affects to vocalize any changes to vision – but more on that in a later post.
On Wednesday, June 8, we went to the retina specialist. Scott came with me, and I’m so glad he was there. The exam was agonizing – there were three rounds of eye drops to dilate Easton’s eyes, and then a nurse held him down while the doctor used an instrument to hold open his eyes and examine him. Then, he told us the words we dreaded to hear: it was retinoblastoma. After this news, the whirlwind began. He started telling us about treatment options and the events that would unfold throughout the next few days: meetings with an oncologist at Cook Children’s in Fort Worth, an MRI and eye exam under anesthesia, and chemotherapy options to begin immediately.
I’m really not handling the news the way I’d anticipated. I’m a worrier – like, an Easton will wear bubble wrap and a helmet at school every single day of his life kind of worrier – but from the moment I heard the word retinoblastoma, I’ve been in business-mode and still haven’t really come out of that enough to be negative about what’s going on. Scott has been the same way, but that’s pretty typical for him. Once treatment starts, I know this will become all too real and the emotions will set in. Until then, we have decisions, appointments, phone calls, and research taking up every waking hour. And the mobile, curious, energetic nine-month-old baby. He takes up some time, too.
We decided to post the news on social media and have been so humbled by the outpouring of love, prayers, and support. These are the moments when Scott and I have become emotional – when friends, people from our past, and even people we’ve never met let us know that they’re praying for us and standing with us in our time of need. Even though we haven’t been able to respond to most of the messages and comments, we cling to every word of support as it lifts our spirits and renews our hope. People are GOOD, y’all.
We’ve seen the Lord’s hand in EVERY part of this journey so far. We’re reminded daily by the doctors that the prognosis would be very different had the cancer been discovered once it became symptomatic in ways we could recognize. We would NEVER have taken him to the eye doctor so young if his physical therapist had not referred him for a completely unrelated issue. Easton had even just been to his nine-month checkup 3 days before that eye appointment, and all checked out okay. We fully believe this was all part of the Lord’s plan for E and that He orchestrated every detail of his development to lead us to that appointment. We even trace it back to him being breech. That simple circumstance – one that I was NOT happy about at the time – caused a chain of events that led to this discovery through needing physical therapy. We were also blessed with a skilled PT who made the right call to explore other causes of his tilt. If Sarah had waited to see if crawling would resolve the neck issue, we would have ruled out vision issues within that very month and never would have gone to the ophthalmologist. The average age that his type of retinoblastoma is diagnosed is between 18 months-2 years old. Easton is nine months old. The cancer has probably been there for most of Easton’s life, and could have continued to grow for more than double that amount of time without us ever knowing.
While we would never want to be in this situation, the timing of the diagnosis is also a blessing to us. In the midst of the most joyful time of our lives, Scott and I have had a difficult year of other health issues. I have two herniated discs in my lower back, and the chronic pain put me in a pretty dark place for about six months. I tried to trust in the Lord and surrender the physical and emotional pain to Him, but I didn’t have the tools or knowledge to do that on my own. When I tried to grow my faith alone, my questions went unanswered and my struggle only intensified. Scott and I had never been a part of a community group through our church, and always felt intimidated by the idea. Then, Compass advertised a discipleship class called Rooted. After the difficulties we’d been through, we knew we needed support and that this was the perfect opportunity to get involved. We’ve learned so much from that class, from Biblical knowledge to the value of community. We heard answers to our questions through the leader and members of our group, many times before we ever asked them aloud. A little over a month into class, we received Easton’s diagnosis. I can say with certainty that this would have defeated us if we hadn’t just developed a deeper understanding of God’s love, power, and presence around us, even in the midst of suffering. That’s the beauty of this timing: our stronger faith didn’t happen as an act of desperation when we learned about the cancer; it developed organically as a result of the class, and no doubt as part of God’s plan to equip us for what was to come.
To be clear: this has not been easy, and I won’t pretend that our newfound, stronger faith puts us above anxiety, frustration, and heartache. We’re human – we fall short and are consumed by worry even when we’re called to rise above it. But we DO have a renewed hope that our needs will be met with the Lord’s grace and guidance. There are difficult times ahead, but for now, we’re so very thankful for the sense of peace surrounding us that allows us to boldly take the first steps of this journey as we fight for our baby’s health and vision.
“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.”
Psalm 46:1-3