Claire's Diagnosis Day
I woke up this morning and Jordan asks me, “Do you know what today is?” Immediately my mind is racing. It is not the 17th, marking another month without Claire. It is not the 24th marking Derek’s 4th month of life. It is not the 29th, marking our 10th year of marriage..... No it is the 13th ...marking the day Claire was diagnosised with Infantile Acute Lymphoblastic Leukemia.
Two years ago we woke up, Claire was still proceeding to get worse. When I walked into her room she was unable to lift her head off her mattress. She did not want anything to eat, not even a bottle. The only thing she could do was lay in her daddy’s lap. This was not my daughter. Before her mid-morning nap, I changed her diaper. The side of the diaper gave her a paper cut, and then I noticed all these small, faint, and petite purplish dots on her face, arms, and legs. I laid Claire down, and I googled these mysterious dots. They were petechiae. A common symptom of Leukemia. At that moment we both knew she had Leukemia. The rest of the day came in a blur.
At the doctor I knew something was wrong. After an exam labwork was taken. When the doctor finally came in the nurse brought in a chair for me, and asked me to sit down. My heart was pounding. “Claire has Leukemia.” I remember thinking, Why Lord? Why my child? What did I do wrong? She is well taken care of, loved, and too precious. My mind was racing. My heart was pounding. I couldn’t think. I just remember looking at her, in her carseat, screaming NO in my mind.
We were both so taken back. The doctor suggested we get someone to come meet us in Lynchburg and drive us to Roanoke Carilion to meet a pediatric oncologist. Jordan and I called family, but quickly realized we could not wait. There was so much nervous energy in us, we started driving ourselves. Looking back that car ride seems unreal. It was filled with silence, tears, fearful conversation, and phone calls.
Arriving at the hospital we met with a team, went through Claire’s history. Combing every detail looking for signs and triggers to our recent diagnosis. Treatment plans were discussed, and we were trying to grasp all these new changes. Then came the second blow hit. Claire not only had Leukemia, but more lab tests revealed she was in critical condition. Her organs could fail, she could stroke, or suffer serious injury from lack of circulation. Now our new normal was gone. Not only is my daughter sick but on the edge of death. I couldn’t breathe, I couldn’t think, I was not ready to lose her. I wasn’t ready.
Immediately we were transported to UVA for a life-saving procedure for Claire. They tried to air lift her, but chose an ambulance instead due to a rain storm. Finally we are on the move. Then about an hour into the drive the ambulance had a light come on the dashboard, and they were forced to pull over. Protocol did not allow them to proceed even though my daughter was in critical condition. I was a wreck, as we waited for the second ambulance to come pick my daughter. I called a good friend. I was frustrated, scared, and emotional. I needed someone to make sense of all this for me. What was God doing to my family? Where was He? Why wasn’t he interceding for Claire? I just did not understand, it was more than I could take. You know how it feels when you are on a rollercoaster, and you make the first plunge down? Your heart is racing, your stomach is in your throat, and you can’t seem to catch your breath. That is how this day felt.
When we arrived at UVA, there was a team of around 10 people waiting for us at PICU. For the next few hours, doctors prepped her for the procedure. They asked us to come in and hold her. Jordan and I didn’t know if that would be the last time. After we left her room we found a quiet spot in a hallway, sat on the floor, and held each other while we cried and prayed. By the grace of God they saved her life that night, and there were no long term side effects.
Phil 4:6-7 ”Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”
Looking back now I see God. I see his hand working in my “mommy radar”. Intuition told me something was wrong with my daughter, and what it could be. God sent us to the pediatrician who could finally diagnose her after 9 days, 2 doctor’s offices, 3 nurse calls, and 4 appointments. The Lord sustained my daughter even though the ambulance broke down, and a life-saving procedure was delayed. We were so blessed by the outpouring of love and support from family, friends, and community. And best of all, we were surrounded my brothers and sisters in Christ throughout that entire day and the rest of her journey. The pediatrician, the nurse, the Roanoke Carilian oncologist, the PICU nurse, the medical flight team that eventually took us to Duke, and the plethora of fellow believers we met in Durham. Many of which have become family to us.
Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
Cancer is destructive. The journey was arduous. Losing Claire was devastating. But God has, is, and will continue to prevail. I have felt the Lord work in our own lives. Jordan and I are by nature very careful, very planned, very thoughtful people. We love the Lord, we want to serve him, we want to live for him. However, our desire to be prepared, to be responsible, and to provide for ourselves limited our ability to step out in faith. We did not even realize the control we tried to exert on our lives until it was gone, but the Lord was there to catch us. The last two years have been very humbling and a challenge for me. Teaching me to fully rely on God, not myself. Seek his calling, not comfort. Store up treasures in heaven, not those in clay jars. Realize that at any moment life can change drastically, so enjoy your current circumstance, do not take it for granted, but always be prepared to go where God is calling.
Phil 4:4 ”Rejoice in the Lord always; again I will say, rejoice!”
I miss my daughter. I miss her laugh. I miss her thirst for life. I miss caring for her. I miss the way she made my husband feel. I miss the big sister she would have been for Derek. Among all that I lost in Claire, I gained in my faith. For that I am thankful. So today I will praise the Lord for the 20 precious months with my daughter, the way she reshaped the way I understand the love of Christ, and the promise that we will be together in eternity worshipping the creator who brought us together if only for a short while.
Claire Parker Foundation
Unfortunately there are many stories like ours. Families hearing the single most terrifying thing. "Your child has cancer" It can completely send your life in a tailspin in less than a minute. Sometimes it is unexpected, you are unprepared, and shuffled from place to place. Not only can it drain you mental, emotionally, and financially, but also spiritually. We know this first hand. That is why our non-profit organization strive to reach out to these families at the very beginning of their journey. Our Claire Care Box tries to meet needs that families have if they arrive at a hospital without cash, without toiletries, without a background in surviving cancer. Then we continue to follow our families supporting them monthly. Checking up on their children's progress, sharing stories, sending encouraging packages to patient during long difficult treatments. No one should have to go through this, so we desire to help shoulder the burden, easy the pain, combat the loneliness, and praise God in the process.