I reached behind the seat, in the dark car and rubbed Allistaire’s leg. “Are you okay Sweets? Are you in pain? What are you thinking?” Her sweet little voice and tender eyes respond, “I will still love you when I die.” I look over at Sten and see the glassy sheen of tears filling his eyes. She was desperate for a new doll with a pretty dress. Already, so fast, I am discovering it impossible to say no to the desires of a little girl who may not have much time left in this world. When she pointed up to the top shelf and said she wanted the doll in the white dress, a ragged cry caught in my throat. A doll in a wedding dress. “She will never get married,” stood the stark statement in my mind. We walked hand in hand back through the parking lot, my arm bobbing along with her joyous skips. “Mommy, I’m learning to skip in gym,” she declared with triumph. Immediately I saw in my mind her uniforms for school hanging in her closet. She will probably never go back to school. With certainty she will never, ever go back to preschool. She only got to go to two of her dance classes and less than a handful of her swimming lessons. I don’t know how to bear it. No, she is not dead, not now. But death is already coming to rob, to shred and tear and ravish. I think of her room, of her closet with the walls covered in her school work. She only counted to 10 for the first time the other day. It will never matter if she can hold her scissors right or read. It will not matter that her ovaries could never give her children.
Throughout this long day, Sten and I both so hoped, thought somehow there might be a way out of this. It just seemed too awful. We had literally just begun to taste of a real life all together. For so long I silently berated myself for making her cancer such a big deal. In my Bible Study discussion group, my every response seemed tied back to this agonizing battle. It has consumed nearly everything in our lives. It saturates every decision, every hope, every plan. I fear I may be swallowed whole by it or torn bit by bit into thousands of tattered pieces. I do not know how to bring this little girl home to die. So many points of her life flash into my mind. I remember so clearly sitting in my blue chair reading one evening. I felt her move inside of me for the first time. I was only 13 weeks pregnant. I remember her so sweet adorable round head and beautiful cheeks. She loves to snuggle in bed on Saturday mornings and no pleasure is greater than opening my eyes in the morning to see her bright blue eyes smiling back at me. Lord help us. Father help us.
Dr. Gardner called at 5:30 to say that she had called the pathologist. It would be another 30-60 minutes. They just had so many samples to run through. She told me that the radiologist at Children’s who looked at Allistaire’s X-ray from Friday did not think it looked too abnormal. We were not sure what that meant but stowed it away into our basket of hope. We were in the toy store when Dr. Gardner called back. There is .9% leukemia in her marrow. Just shy of one percent cancer, but it doesn’t matter. It doesn’t matter that 99% of her marrow is healthy. There is present there a marred thing, a mutated ugliness that cannot be stopped and it will not stop until it is all there is and there will no longer be red blood cells to carry oxygen or platelets to bind up wounds or white blood cells to protect against the constant invaders of bacteria and virus and fungus. I watch her play with the train set. We have told her her sickness is back. As I embrace her, she says she is sorry and then returns to the trains oblivious, utterly oblivious of what will likely come.
Allistaire’s leukemia is not a high enough percentage to qualify at this point for the DOT1L inhibitor trial. She must have 10% or more to qualify. Dr. Gardner says she will call us tomorrow after Allistaire’s MRI to talk about what’s next because at this point she doesn’t know. She has already begun talking with Dr. Pollard who is now at the Barbara Bush Children’s Hospital in Main and will also be consulting with the transplant doctors. I asked whether or not she could do the trial for transplant without remission that she did before, as I saw that it had reopened. No, no it didn’t work before, so they do not allow you to do the same trial again. And then she adds this, “if she does not get in remission, she will most likely not be offered any transplant.” My heart nearly stops. Remission. Oh what an overwhelmingly hard goal. And now I see. If this DOT1L inhibitor does not work…there may be nothing after that. Nothing. Nothing but making the most of the time that is left. This is where my whole being slams so hard against the wall. How is it possible for me to give up? How can I possibly every come to the point that we have nothing left to offer her? Can you not see this girl? This bright shining fiery flash of a girl?! Tell me how can she be extinguished? How can I possibly stand by and watch that happen. How can I ever bear the sound of silence in my house? How will I walk past that room? What will become of Solveig? How can we love her well enough?
It is so surreal to watch people go about their life when your’s has just been absolutely cut through. You hear people laughing and you see the blood seeping from your side and you feel yourself grow faint.
I feel decimated. I feel flattened and torn. Bewildered. How do we keep going? I mean, I know we will, somehow we will, but how? How do I walk forward without absolutely wasting away, skittering across the ground like a dried out husk. What have the days behind me shown me? “Lift Your Eyes.” I feel so feeble, but this is my life-line. This is my anchor. I ask my God to help me lift my eyes to see Him. Oh Father, give me eyes to see you. Give me ears to hear your voice. Help me to lean on the truth that you are the Ancient of Days. You are the Alpha and the Omega the beginning and the end. You hold all things together by the power of your will. You are the creator God. What is seen with my eyes is not all there is. Let me not be deceived into believing that this is all there is. Am I desperate for their to be something more? There is the part of me that thinks that if this finite life is all there is, if I really just turn to dirt when I die, then let me die now. Let me just be done with this life and this burden. But I know in my core that there is a mystery of such magnificent beauty from which I cannot turn away.
My Father, who art in heaven. Hallowed be thy name. Thy kingdom come. Thy will be done, on earth as it is in heaven. And give me this day, thy daily bread. And forgive me of my trespasses as I forgive those who trespass against me. And lead me not into temptation, but deliver me from evil for thine is the kingdom, the power and the glory forever and ever, Amen.
I choose to look back over the years and seasons I have walked this life alongside my Christ. He has been faithful to me. He has laid in my palms treasures of understanding, more glorious than anything else I have known – in part because they embrace what is dear to me, they illuminate the true nature of what my life consists. I love my children more. I love my husband more. I love the earth more. I love my church more. I love my flesh more. I love the other spirits in my life, my friends, my family, the person at the check out, I love them all more. Knowing God has enabled me to somehow both treasure my life more and more and also to hold it all with an open palm – to see it all as it is connected into Him. This life of mine is not just about this small window of time. This awful cancer that gnaws and destroys, it is but for a time. And scope, scale – these are some of the foundation stones that enable me to walk forward. I am finite and it is natural for me to view my life from a finite perspective, but the eternal God is beckoning me to lift my eyes – to fix my eyes on Christ and to believe Him when He says there is so, so, so much more. He promises to redeem. He promises to resurrect. He promises to wipe away every tear. I come again to that passage of His word, worn with my pondering and hope:
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.