(By Tanya Coleman)
God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun.
-- Steven Curtis Chapman
Ever since I was asked to write a little about our daughter’s cancer story, I have been struggling with how to condense two-and-a-half years of God’s grace into one article. In every draft, something was missing. I would show it to my husband, Ryan (the real writer in the family) and he agreed. And then as I was reading through pages and pages of journal memories, I realized I had already written this story. The words journaled while in the depths already have God’s faithfulness infused into them.
Here is Browyn’s story:
In April 2013, when Browyn was almost five, we went to the doctor. She had been having on-and-off fevers and lethargy for over six months and I had finally had enough! My oncology nurse’s senses were definitely atingle; I asked for bloodwork. That night the office called to say we had an appointment at the Children’s Hospital of Philadelphia the next day. Several days of testing confirmed my gut feeling. Browyn had cancer. Juvenile Myelomonocytic Leukemia or JMML. This is a rare leukemia that affects app 1.2 per one million children in the US. Now, I am a pediatric oncology nurse, I have been since 1999. I was not familiar with this one. When I was told that the only treatment is a bone marrow transplant (BMT) and that it only yields a fifty percent survival rate, I was devastated. As part of my oncology nursing practice, I also do BMT nursing and I was acutely aware of the risks involved, the long-term effects that I had seen so often. This had turned into the scariest, most ironic nightmare that I could imagine. But, we had no choice. Without a transplant, the survival rate for JMML is near zero. In the words of the Narnian rulers of old, nothing remained for us but to “take the adventure that was sent us.” You will understand that in Narnia, an adventure was not a walk in the woods but what one faces in the darkest hour. So it was with us.
When you have a child that is diagnosed with cancer, your whole world changes in an instant. Emotions, information, and major, life-changing decisions that you have to make, not for yourself, but on behalf of someone else become overwhelming. Priority and focus shift. Purpose becomes survival.
Browyn went through two rounds of chemo and two surgeries before her first BMT. It was sixty days in the hospital. During this time, things seemed relatively easy, at least easier than my experience suggested. But there were still many ways in which the Lord showed His faithfulness and His grace to us during that time. Ryan’s parents live near us, so they were able to be a great help. My parents are retired and had sold their home. They moved three thousand miles to live with us and help with our son, Tanner. One of Ryan’s customers took him on as an employee so that we didn’t have to worry about small business health insurance. Also, as Ryan has often pointed out to me, as a pediatric oncology/BMT nurse with experience at the hospital where Browyn was treated, I was uniquely gifted to care for her during treatment. It’s my calling.
Her transplant was scheduled for September - the September that she was supposed to start kindergarten. She was so disappointed to watch the school bus drive off with her brother on the first day of school. It was one of the drip-drip-drips of little things that become so significant. Her bone marrow donor fell through. Thankfully, in time, another donor was secured, and the transplant went ahead. The process of bone marrow transplant for leukemia is to get rid of the person’s own bone marrow to such an extent that it can’t grow back. It requires very high doses of chemotherapy and sometimes radiation. The donor’s stem cells are then infused into the bloodstream, and work their way into the bones start to grow leukemia-free bone marrow. It’s quite a miracle. Things went as expected for Browyn and the donor marrow began to engraft. Unfortunately, Browyn’s body fought back and the transplant failed. A second “mini-transplant” failed as well. She relapsed in January of 2014.
God is faithful, and He always gave us Scriptures to fit the moment. Always. God’s Word was always there for us through friends’ notes, reading, or verses that just came to mind. Just a few days before Browyn relapsed, the verse, “This is the day that the Lord hath made. Let us rejoice and be glad in it,” (Psalm 118:24) was very persistent in my mind. As I thought it through, more verses came to mind. “Do not worry about tomorrow” (Matthew 6:34). “His compassions fail not. They are new every morning”(Lamentations 3:22-23). When God asks us not to worry about tomorrow, He has promised that His unfailing love and His mercies will be new for each day, not recycled from yesterday, not to be saved for the next day or the next week, but for the needs of right now. Looking back, it is easy to see that the Lord’s timing is perfect.
Once Browyn relapsed, we were told that we could try again with a different donor. It would require nearly a year for her body to recover from the beating it had taken the first time around. In the meantime, we tried a couple of different drugs to keep her leukemia in check. One of those drugs had never been tried in children before, but her team of amazing oncologists was able to get it as a compassionate use drug from the manufacturer. It helped, but it gave her such severe mouth sores that we had to stop using it. Mouth sores are an infection risk and she was still severely immunocompromised.
Browyn did make it the many months to another transplant, but the issues started to pile up: fungus in her lungs, another round of chemotherapy, leukemic cells growing in her lungs, a thirty-day ICU stay, eighteen days of breathing by machine. Within three weeks of her final transplant, she was back in the ICU and intubated again with SIRS (systemic inflammatory response syndrome) related to sepsis. Her bloodstream was extremely leaky and fluid seeped into her lungs, abdomen and other tissues. She needed medicines to keep her blood pressure up so that she didn’t go into multisystem organ failure. The situation was extremely tenuous. Those days and weeks in the PICU were dark and difficult. The words of 1 Corinthians 1:8 were so real: "We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death.” The rest of that section of scripture ultimately became a theme for us. “But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and He will deliver us again. On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many" (2 Cor 1:9-11).
During the waiting between relapse and her final BMT, there were so many days of heartbreak, tears, anxiety, questioning, uncertainty. I remember driving past the local cemetery and wondering if there would be a plot available there if we needed it. How do you plan the funeral of a six-year-old? How do you tell a six-year-old that she is dying? By grace, we were held up in prayer from around the world, on every continent (probably not Antarctica). The power was tangible.
There were so many decisions and so many ways to make them. For each complication, I remember praying specific things to the Lord like Gideon laying out his fleece. I told the Lord that if her fungal infection was worse at the next CT scan, we would stop treatment. If it was better, we would continue the path we were on. It remained stable, no improvement and no worsening. What was I supposed to do with that? There was nothing to do but trust God and err on the side of life. In Psalm 107:6, it says, “Then they cried unto the Lord in their trouble, and He delivered them out of their distresses. And He led them forth by the right way, that they might go to a city of habitation.” I realized that this is what the Lord had done for us. He delivered us from the distress of uncertainty and showed us the right way, for that time, every time. I was restless and going back-and-forth in my mind, unsettled. He brought me to the place where I could be still and rest, a city of habitation. Scenarios just like that happened over and over. Each time, with tears and prayers, we poured our anxieties and fears before God. We talked. We listened to the doctors. We listened to God, and we chose to keep going. The burden of making those decisions for someone else is exhausting and terrifying. I forced myself to remember that from the very first days, the Lord had given me His Word. Luke 1:78, 79, “The Dayspring from on high hath visited us, to give light to them that sit in darkness and in the shadow of death, to guide our feet into the way of peace.” He guided us to peace through the entire experience. Just today, it struck me that the very next verse (referring to John the Baptist) begins “And the child grew, and waxed strong in spirit!”
So, here we are. Browyn is five-and-a-half-years cancer-free. She doesn’t eat, so she is fed daily through a feeding tube. She has trouble with focus and executive function, most likely from her radiation and some of her chemo. Her gross motor skills are behind those of her peers. She receives daily growth hormone injections and will likely never have children. She is at risk for a variety of things – relapse becomes less and less of a risk, but a second cancer becomes more so. We worry about these things, but we’ve learned to put them in the background. Just more of “the adventure that was sent us.” Whatever the adventure, God is weaving the brightness of His grace into Browyn's story, and He promises that having begun a good work, He will be faithful to make it perfect (Philippians 1:6). What will it look like when He’s done? His work began with broad strokes of independence and fire. He gave Browyn intelligence, humor, and imagination. He made her sensitive to His person and His Word. With anticipation, we pray that many will look at her and say, "This is the Lord's doing; it is marvelous in our eyes!" (Psalm 118:23).
What made the difference in our adventure? We learned, slowly and painfully, that God’s goodness, grace, and faithfulness are not dependent on circumstances. People hear Browyn’s miracle and say, “God is so good!” This is utterly true. But, is God only good because our daughter survived the awfulness of cancer? If so, then is the inverse true? When a child doesn’t survive, is God somehow not good? In the course of my job, I struggle with this almost daily (survivor’s guilt is a thing).
Here’s a different story:
It was Saturday. This little girl lay on the bed, comfortably asleep and, oh so beautiful. Her mum, wrapped in a blanket, dozed in the rocking chair next to the bed. Dad slept on the couch next to the window. She was seven years old and her parents had just learned the day before that further treatment of her leukemia would be not just futile, but cruel. She was dying.
By Sunday, she was still comfortable, but only because we had increased her pain medicine at least 3 times. This time her mum was beside her in the bed, arms wrapped around her while her dad sat and watched from the rocking chair beside the bed. He struggled to reconcile comforting his wife and being present with his daughter. He struggled with the pain in his own heart. Monday morning, I received an email that she had passed away peacefully in the night. She was the second from our unit to pass into the arms of Jesus on that day. There were eight names on our remembrance board for the previous month.
Sometimes I don’t know what to do with such sadness. Why was our daughter spared and these other children weren’t? I may not ever know the why, but it’s possible that the purpose of any trial is the knowledge of Himself and His presence. In one of my journal entries, I specifically wrote that one of the reasons for my journaling was to raise a flag or set stones for a memorial. I wanted to look back and see what the Lord had brought us through. One of the overwhelming themes that I see is that God is good, and faithful, and gracious simply because He is who He is. He cannot separate himself from His character. When we rely on ourselves and our own understanding, that reality is far from us. When we are forced to cast everything dear into the Father’s hand for safekeeping, it becomes evident that He is faithful and can be relied on without hesitation in any situation. As C.H. Spurgeon wrote, “The conclusion from our past experience is, that He who has been with us in six troubles, will not forsake us in the seventh. What we have known of our faithful God, proves that He will keep us to the end.”