So the thing about cancer is you never really know if it’s gone. You want to just lean back and soak in the good news and forge ahead with life – leaving the horrors behind. But in a flash, you fear the dark head of its return out of the corner of your eye. You watch the strange tip toe walking of your child and how she grips the back of her knees in pain. Immediately your mind is scanning through the possibilities. You assess the situation from every vantage point you can muster. How is she eating? How is she sleeping? How is her attitude? What could be causing the pain? Muscles? Lymph nodes? She told me once a few days ago the bottom of her heels hurt – is that why she’s walking that way? Or is it the pain behind her knees that may somehow be alleviated by this tip toe walking? She’s now on steroids and that seems to have made her more grumpy, or is she more grumpy because she is experiencing pain? The cancer seemed to have spread to the lymph nodes behind her knees in the week before conditioning for transplant – could it be back and that be the source of the pain? Well, she hasn’t said anything about the front of her knees hurting, nor the lymph node in her armpit – of course that one was radiated. On and on it goes, your mind racing – your enjoyment of the evening tainted.
You see, we’ve had “no detectable cancer” before. We’ve had four flow cytometry tests at zero percent from the first time she was treated for AML. We’ve had perfect cytogenetics and morphology. And it was still there – somehow the cancer still lurked, unseen. So while I utterly rejoice at these glorious test results on Day +28 from transplant – all three perfect – bone marrow aspirate, morphology and cytogenetics – you know these are no guarantee. And so, I am ever on the alert, always keeping watch over every detail, every nuance. And already it makes me cranky and edgy and short with Sten. My voice is not kind and it is hard to not focus on the fear. “I can’t do this again,” I think. “Please don’t make me go back there Lord.” For no matter how much I continuously strive to surrender my life and yield to the Lord, whatever the circumstances, I still desperately want my child to live. I say to God, “Father, your will be done, but oh please, let your will be that my beloved live.” I know that the test results are absolutely no guarantee of the days ahead and I know that they do demonstrate an incredibly wonderous reality at one point in time.
I have prayed often in these last several months, that if we do get to bring Allistaire home to live, that God would show me the way to live differently this time – not so gripped by the crushing weight of fear. As a mom, of course I attend to every detail of Allistaire’s well-being and this experience has given me cause to be far more attuned to her than I even naturally would be. I have to speak for her, as she can only provide a three-year old’s voice. She is largely unable to articulate the specifics of how she feels and I am left to be the interpreter. Tonight I am wondering if we need to do some sort of scan to look at the back of her legs, but I really don’t want to – I really don’t want to see cancer there. I’ve never been one to push away realities and look away, but man is it tempting. I want to leave the hospital on Monday rejoicing and focused on getting through the next stages of healing from the transplant process. But this is part of it, wondering and looking out for the cancer’s return.
As of today, Allistaire is off of all IV meds and is only getting IV fluids at night. She has confirmed GVHD in her upper and lower digestive tract and as a result, is now on four additional oral medications. She has been getting Tacrolimus from the beginning as an immunosuppressant. She is now on the low dose steroid, Prednisolone, which creates a body-wide, systemic suppression of the immune system to counteract GVHD. Additionally, she is on Beclomethasone which coats the esophagus and stomach and Budesonide, which coats the walls of the intestine. These are both essentially, internal topical steroids. Omeprazole (Prilosec) is used to reduce the acid production in her stomach since she seems to have some evidence of reflux as well. All total she is on 12 different daily meds resulting in twenty-two doses of medicine a day that she is required to take. The additional meds help the heart and liver, protect against viral and fungal infections and Pneumocystis pneumonia, and provide a few additional necessary nutrients. On the surface, Allistaire seems to have a robust immune system, sporting an ANC of 6092 as of her most recent CBC (Complete Blood Count). Yet in reality, the donor marrow is still just getting established and some of the various white blood cells will not be up to normal, healthy levels for up to 6 to 9 months post transplant. On top of it, she has immunosuppressant drugs to combat GVHD but which also have the effect of suppressing the production of a number of white blood cell types which are crucial parts of the immune system. Some of the suppressed cell types include T and B cells.
As of now, we are scheduled to discharge on Monday, July 22nd. Sten and I have been watching videos, going to class and meeting with the transition nurse to get all prepped on life outside the hospital. There will be a lot of changes, not just from living for the last 147 days institutionalized, but even quite different from before Allistaire was sick – very different even from the last time she left the hospital after treatment. All these changes warrant an entire post of their own, which will have to wait for now. On Monday we will be given all her initial meds to take to our apartment at Ronald McDonald house and from now on she will have clinic appointments every Tuesday and Friday at Seattle Cancer Care Alliance in downtown Seattle. Each clinic day she will have labs drawn and meet with the PA or Nurse Practitioner, the attending doctor, the nutritionist and often the pharmacist as well. If she were to have a fever or any other significant change we would likely be readmitted to Children’s for an inpatient stay while they assess and treat her.
If all goes as smoothly as possible, with no relapse of her cancer and controlled GVHD, the absolute soonest we would be able to return home to Montana would be 100 days post transplant. This puts us here in Seattle at least until October. This is such a daunting thought, yet I constantly remind myself that returning in October with Allistaire alive and well would be an incalculable gift. I miss home, boy do I miss it but it almost seems like a fairy tale place. It is often hard for me to believe I really have a life there. I didn’t recognize my own driveway in a video Sten sent me of Solveig riding her new bike. It is weird to have to ask your husband what your child is up to these days. Five months ago today, I saw that I had a missed call from Seattle Children’s Hospital. As I listened to the voice of Dr. Gardner asking me to call her back, I knew. I knew that biopsy result had confirmed that Allistaire had relapsed. My face and heart have never hurt as bad as they did that night. I had seen enough the first time around to know what did and could lie before us. That seems forever ago. I’ve been home five days in five months. Life before cancer seems forever ago. I watched kids running across the grass this evening. I watch their bodies moving, their mom along side and I wonder what it is like to not constantly fear what is going on inside your child’s body. I have a healthy child. I do know what it’s like and I don’t. The wondering will now always be there with Allistaire. Cancer casts a cold shadow once it has entered your life. Even with amazing test results less than a week ago, I am left wondering. Her bone marrow is clear but what about the rest of her?
The Lord broke down a mighty wall and expanded my borders. Yet I still see walls, walls that define the contours of my life, walls that I grumble over and curse and in whose presence I cringe. I have seen the face of my Father thousands of times, but still I must turn back to Him. Hebrews 4, calls the child of God to, “make every effort to enter that rest,” the, “Sabbath-rest for the people of God.” Such a strange admonishment to “make every effort,” to enter, “rest.” Aren’t the ideas of “effort,” and “rest,” opposed? What I know is that I do not naturally rest in the Lord. What is natural for my flesh is to be at “unrest.” I am prone to anxiety and listlessness. I am prone to gripping my troubles in my own fists, turning them over this way and that, trying to find a way to make them into what I want. I try to fancy up my walls, chisel in hand. Rather, I must choose to turn. Sometimes I find it far too much for me to even slow the inertia of going my own way, that I might turn to the Lord. “Help me turn to you, Lord.”