Childhood Cancer Warrior: Henry
Henry is the kind of kid that makes you wonder why we need school conferences or annual doctors check ups because there are never any issues that need to be addressed. He was always happy and had nothing more than a couple of ear infections in his health history. As Henry’s 11th birthday approached, something felt off. He started to complain of stomach pain, had less energy and a decreased appetite. He started asking to go to bed earlier and stopped doing his favorite activities like jumping on the trampoline or throwing a ball around. Up until this point, Henry had been funny and silly nearly all the time. He had the best friends but also thoroughly enjoyed anyone he met. He never stopped moving or talking, even in his sleep. There was no dessert or treat he would turn down. The change in Henry was subtle at first and not always consistent, throwing me and my husband, Jonny, off. But as time went on, we saw less and less of the Henry we knew. A couple of weeks into his 5th grade year, his stomach was hurting so much he didn’t want to go to school or would be at school and call from the nurse asking me to come and get him. The boy who had filled every room with laughter had become subdued and quiet. He would barely eat even his most favorite treats.
During this time, we saw two doctors in Midland, TX, where we live, and had a virtual appointment with his original pediatrician in Houston and we were told that stomach pain in children is pretty much always stress and anxiety. Henry had never been an anxious child, and that diagnosis never felt right — but we kept hearing it, so we tried to work with it. We searched for child therapists, spoke with his school, worked together through anxiety workbooks with him, but nothing helped. One morning, as he begged not to go to school, I looked in his eyes and said, “Henry, you can tell me anything and we will work through it. What are you anxious about?” He looked at me with tears in his eyes and said “I’m anxious because everyone is telling me I’m anxious.” At that point, I knew something was physically wrong with Henry’s stomach. I called Henry’s godfather, a pediatrician in Houston, and asked if he would see Henry and really check him out because no one was taking it seriously. My gut was screaming that my child was not okay. Sadly, Henry’s great grandfather, Papa Paul, passed away the same week in Houston, so naturally our family needed to be there for the funeral. It felt like a sign from God that He was making sure Henry would be in the best place to get the right medical care. Our Henry Paul, his Papa Paul’s namesake, was being taken care of by his guardian angel, Papa Paul.
Immediately following the funeral, Henry, still in a suit and tie, and I went to see Henry’s godfather at his medical practice. When he pressed on Henry’s abdomen, his demeanor shifted from relaxed to quietly concerned. He ordered imaging and labs and personally brought us to Texas Children’s Hospital for an ultrasound after we were originally turned away. The radiologist came into the room after the ultrasound was complete and told us Henry had an intussusception (a telescoping of the intestines), which is very rare in kids Henry’s age and therefore, indicative of a larger problem. We were sent downstairs to the Texas Children’s emergency room, where a CT scan was ordered. I will never forget holding Henry’s feet in my hands while his body was moved in and out of the CT machine praying for God to be near. I had no idea how much we were about to need Him. Shortly after the CT, the attending doctor asked my husband, Jonny, and me to come with her to the “family room”. We walked down that hall unaware that our world was about to shatter.
She told us the CT had found a golf ball-sized tumor in Henry’s intestines — the cause of the intussusception and all that pain. The location was indicative of lymphoma. Our sweet, lighthearted boy had cancer. It felt as if my life had existed as a single pane of glass, and someone had taken a hammer to it and smashed it. Not our Henry. Not our happy boy. Please God, not cancer – a disease whose treatment can be as deadly and destructive as the disease itself.
That night, Henry was admitted to the oncology floor. Jonny and I stared at Henry sleeping with his first hospital bracelet since he was born, hooked up to the first of many IV poles, as we cried and reimagined our lives and what this meant for Henry and for our family. The next day, September 28th, Henry underwent a major abdominal surgery, removing his tumor and over a foot of his intestines to fix the intussusception. A biopsy of the tumor confirmed Henry had stage 2 Burkitt’s lymphoma, a non-Hodkins lymphoma that can spread from the original tumor throughout the whole body in as little as a day. It is one of the fastest spreading cancers. By the grace of God, the bone marrow biopsy and spinal fluid retrieval came back clear. Catching it when we did was crucial — to his prognosis, to his treatment timeline, and ultimately, to his life.
Henry and I stayed in Houston for the remainder of his treatment. We have two daughters, Evie and Lydia, who were 9 and 7 at the time. They also needed a parent so we made the heartbreaking decision to split up the family during the week. The company that Jonny works for, Permian Resources, generously flew him and our two daughters from Midland to Houston every weekend.
Henry completed two intense rounds of immunotherapy and chemotherapy and suffered through several scary and painful complications along the way. While he was only supposed to spend two rounds of 5 nights in the hospital, he ended up being in-patient for the majority of his treatment because of complications, zero immunity, fevers, and other side effects. When his sisters would visit his hospital room on weekends, I would line all three pairs of their shoes up in a row and stare at them like a lifeline, feeling the weight of our new reality and relief that, even though it was temporary, in this moment, all my babies were together again. And then, inevitably, Sunday evening would come and the girls would cry as they left with Jonny to go back to Midland, ripping my heart into a million pieces. Sundays were a gut punch; a reminder that once again, our family was torn apart. That evening though, there would be a knock on the door, and someone with a big smile and Skyhigh t-shirt would generously ask if we would like a warm, freshly cooked dinner. It was such a kindness to us, especially on our hardest day of the week.
On November 21st, all of our dear friends and family and his special nurses and doctors, who had all carried us through our hardest season, showed up on the Texas Children’s oncology floor for Henry to ring the bell. These people had taken our girls as their own when we couldn’t, had brought us food, housed us, driven us to and from the hospital and airports, done our laundry, watered our plants, cooked for us and prayed on their knees for us. Our friends in Midland and family out of town had come to Houston over and over to sit with us, hug us, pray with us and help bring laughter and silliness back to Henry. Over 50 people made two rows and joined hands overhead, forming a tunnel. Henry ran through the tunnel and rang that bell with all his might, marking the end of his successful treatment. The love, generosity, kindness and joy in that room will be etched in our hearts forever.
As all cancer survivors and their families know, the cancer journey does not end when the survivor rings the bell. It will always be part of Henry’s story. There will always be extra worry, doctors appointments, labs and scans. Every pain, bump and weird feeling will be seen through a cancer lense. But there will also always be enormous gratitude and perspective for the rest of our lives. Gratitude for Henry’s health and for his wisdom, faith and bravery. Gratitude for every healthy day and for every night we are all under the same roof. Henry faces life with a conviction that God is in control and that He will never abandon Henry. He has a plan for Henry and Henry trusts in His plan. Henry shows us that strength and faith have nothing to do with age, but with a person’s character and dedication to the Lord.
Right after his diagnosis and long before Henry knew what his journey would look like, he asked to look for a bible verse to memorize and get him through his battle. He chose Psalm 28:7 “The Lord is my strength and my shield; My heart trusts in Him and I am helped; Therefore my heart greatly rejoices, And with my song I praise Him.” In scripture, 7 signifies divine perfection, completion and spiritual fullness. We saw the number 7 continually in unexpected places, a reminder that God was holding Henry in the palm of His hand and had a perfect plan for Henry. We praise God for what he has done in our lives and revealed to us through Henry’s battle.
