We moved out. We flew the coop. We said, “Peace OUT, Ron Don!” We moved home. We unpacked. Our clothes hang in our closets and I pull my deodorant out of my own medicine cabinet. I have a drive way and a mail box and a grocery shopping list. I hung my hay bales painting back in its rightful spot. I am reclaiming my domain. I am driving the stake into this ground. And I am hoping, praying we get to stay.
I was hesitant to start writing this post because I have not heard back from our pediatrician, here in Bozeman, about the remainder of Allistaire’s labs. How am I to frame this post, how am I to frame my day, my life? We went in for Allistaire’s weekly check up and labs. Almost everything is back and everything looks great so far. Her hematocrit is 40, her platelets 227 and white blood count 3. We’re just waiting for the manual differential to come back. It’ll probably be fine. All her other numbers are fantastic. But that seed of horrifying reality has been sown far and wide in our life. Looks can be deceiving and that’s why I hesitate.
I hesitate in knowing how to step forward. I never thought I would move home in a state of limbo. I always assumed there were two options: she lives or she dies. But again, here I am, in this land of the already and the not yet, in the good but bad. I’ve been here before. When we came home last June 2012, I existed with the constant fear of relapse ringing in my ears. And those fears have been realized, and so much more. And the truth is there is no going back. There will always be the fear of relapse. There will always be so many fears that can crystallize into reality before my very eyes. The longer you are on this journey, the more names and faces and stories you amass and they become as significant as any statistic science can give you. They are the flesh and blood behind the numbers. They are the children that barely made it through when all the odds were stacked against them. They are the parents that just yesterday, faced the 6-month anniversary of their beloved boy’s death. The other little girl on the study with Allistaire, Marleigh, is not doing well at all. She went to Disney Land on her Make a Wish trip and towards the end of it began experiencing such intense pain in her legs, spine and abdomen, that she stopped talking and refused to let anyone touch her. She had 20-30% leukemic blasts in her peripheral blood. She was stuck in a hospital in California until they could arrange a special flight home. Please be praying for her and her mom and dad, Becca and Matt. You can follow their story on Facebook, “Miracle for Marleigh.” When I look at Allistaire I think of Marleigh. When I read of Marleigh’s agonizing struggle, I think of Allistaire. Intertwined.
By all appearances, however, Allistaire really is doing great. She completed her steroid taper this past Saturday and is now on only 3ml of Prednisone every other day. Her appetite is not spectacular and it still takes an extraordinary amount of time and prompting to get her to eat her three meals everyday but she has only lost .1 kg since she was weighed at Children’s last week. Dr. Ostrowski thought she looked slimmer in the face and tummy today since last she saw her a several weeks ago. To use my brother’s words, “she looks deflated.” It is likely that she has and/or will lose some water weight as the steroids cause you to retain fluid. She’s sleeping, peeing, and pooping well. There’s no sign of a skin rash. No vomiting or fevers. And energy? She outlasts Solveig. Solveig will eventually slink away to her room or the living room chair to indulge in a book only to have Allistaire track her down and plead to do more of their spinning games or perhaps another round of being kitty’s together or playing rodeo where they take turns doing tricks with their stick pony, and saying things like, “Good girl, Flower. That’s a good job.” So far no apparent GVHD flares or other outstanding issues.
The house fills with the bright airy light of reflecting snow. Solveig spied two moose down in the aspen trees the other morning. Allistaire made snow angels and dumped shovelfulls of snow into the wheel barrow. In the morning all is blue and white and then the sun begins to rise, skimming off the eastern slopes of the Spanish peaks, all pink and orange. Life is really good and life is really strange. I told Dr. Ostrowski, I feel a little less crazy than I felt when I brought Allistaire home after she was first treated. She assured me I’m not crazy. I wondered aloud if the normalcy of cancer in Seattle at Children’s and SCCA, makes my feelings and responses seem crazy when to every professional around me, all just seems common place. How do I move forward? What steps do I take? How do I spend my time and energy? In what relationships do I invest? How do I prioritize?
Here’s how things could go. Here’s how things would go in the most ideal scenario: We spend another lovely week and a half at home enjoying friends and family and beauty and then Allistaire and I will head back to Seattle around the 16th or 17th of this month in time for a bone marrow test on November 18th. We will wait for results before resuming chemo. On the 20th, Allistaire will be seen by GVHD guru and SCCA Continuing Care Clinic doctor, Paul Carpenter. If results are good, ideally 0%, Allistaire will begin her fourth round of chemo on the 21st and finish up on the 27th, just in time to jump in the car and get on the road so we can get home on Thanksgiving day. If bone marrow results were between zero and five percent, we would have no choice but to continue on with the Azacitidine, given that you must have 5% or more to be eligible for the possible clinical trials she could try. If it is over 5%, well, then who knows. We go with the best clinical trial, home to keep things under control and make it to a second transplant. So many options.
People keep asking me if it is so great to be home. Here is a suggestion. Ask an open-ended question. Asking me if it is great to be home forces a yes or a no response and it makes me feel awful that I can’t just give a simple, pure, “yes.”. Something core says to me that home is supposed to be where things are “normal,” life is good and safe. I never wanted this “thing,” to cross over the threshold into my home. This is my domain, this is the place where I am supposed to preside over what occurs. I am supposed to be in control in this place, or so I tell myself. But here it is, this wild, sneaky cancer dwelling right where we sleep and eat and have our family pictures. It really is like the title of that movie, “A Lion In the House.” Safety and control have been extinguished and you see, this place, this building, this sacred home was supposed to be a place devoid of cancer. Allistaire was never supposed to be here with this thing still lurking. But this is our life and we have no idea how long we will have to try beating it back like a wild-fire in a dry field.
I started this post with fear rising as time progressed and no lab results had been given. Several hours later all was well and we had the manual differential that all looked great and a nice ANC of 1710. Since I began writing, it seems Marleig’s chemo is steadily reducing the blasts in her peripheral blood and she is smiling again. Since I began writing, my texts to Pam (Caden’s mom), have turned from the joy of trying to plan dinner together next week, to the horror of the news that Caden has relapsed. There is less than 1% neuroblastoma cells in his marrow, but it is there and now they face ever-deepening darkness. It is a terrifying thing to have your child diagnosed with cancer, but it really cannot compare with the terror of having them relapse. Relapse means you’ve already tried the best available and it didn’t work. Relapse means you’ve already been at this a long time and watched your life get ripped up and twisted into something unrecognizable to your own eyes. Relapse means you now know the faces and names of those who have gone before you and you have details of horror from which you are desperate to turn away. Relapse means you are already so worn down. You have virtually exhausted your resources – resources of time, money, energy and heart. With diagnosis, you meet the enemy head on with determination. With relapse, your tenacity and resilience is waning, but never has the fight been more fierce.
You see that spectacular view of a snowy field and all the delicate details of limbs outlined in snow, morning sun beginning to rise? You see those two girls frolicking together ceaselessly, bringing you the greatest joy this earthly life can offer? You see that sweet, excited face ready for you to be amazed at her creation? Home is full of unending beauty and joy and gift. And home is tainted with the sour, acrid taste of impending doom. Creeping into the edge of every moment, is cancer, but more, it is the potential loss of something more dear to you than your own flesh, than your own life. Yes, there are joys upon joys, but they are too, reminders, evidence of how much can be lost. I have come to see with utter clarity that I am in control of almost nothing and that everything dear to me can be taken away and destroyed. These realities leave me gasping, wondering where it is safe to take the next step, where do I put down my body weight, because it seems that at any moment, the ground may give way. No matter how sure the footing appears, every step forward is tenuous and vulnerable.
I have asked myself a hundred thousand times, what really does my faith do for me? Because I do fear. I do worry. I do feel undone. Am I really any different at all because of my belief in this Jesus Christ? I look around and see plenty of people fumbling their way through this crazy road and they look like they’re doing at least as well as I am. We all have the same amount to lose. We may all lose our child and not one of us thinks our child is less precious or glorious. Not one of us yearns less to have our beloveds always with us. As a Christian, losing Allistaire, is still losing Allistaire and I am desperate to have her with me. And my love for her propels me to fight with all the vigor I can muster, to sustain her life. I will not cease in that. Even as I know that the Lord may take her, still I endeavor to keep her. I find myself in the very strangest of predicaments, in the most bizarre of places. I stand on both sides of seemingly opposing forces. I stand with the smarty pant doctors, and fancy drugs, and big medical centers and over four million dollars, pulling out every conceivable weapon to keep Allistaire alive. I call upon the Lord my God to use all of this resource and knowledge of the body to protect and provide for her. I ask Him to use His status as God, to do what even science may be unable to accomplish. And I stand in the opposing direction. I stand with the Lord who says that He is the only one who determines the days of our life and gets to choose when our life is done. I stand with the Lord and hold my child with open hands and say, “Yes Lord, she is yours. Her life is yours and she is in your hands. You have authority over her life and her death. I kneel before you as the Ancient of Days, the God of the Creation, as my Savior. I submit to your goodness.” It is very mysterious and mind bending to stand on both sides, and really even to stand with the Lord on both sides. These two forces are in direct opposition to one another, or so it seems. As my dear friend put it, I am at war and peace. I retain my place in the front lines of this fight and I strive to enter the rest God has extended to me in Christ.
So, faith in this God, what really is it offering me, because on the surface the loss is the same and the sorrow for that loss is the same. I do not grieve less for the possible loss of Allistaire because I believe in Jesus. But Allistaire’s death is not the end point. My hope goes beyond the hope for her life to be sustained. Yes, I put my hope in something that I cannot see with my eyes, that cannot be measured, that seems outlandish. I put my hope in God’s words that say there is life beyond death. I put my hope in the bold claim that life is eternal and that this earthly life is really a breath that vanishes. I put my hope in a God who will overcome all sorrow with joy. I put my hope in a God who will one day utterly wash away the rank sin of my heart and the putrid diseases that steal away our life. My hope is not only for the fleshly life of Allistaire, but for fullness and eternalness of life for all who seek after God, in Christ Jesus.
The question I ask myself is how do I live out my daily actions in light of these hopes I cling to? How do I orient my heart and mind so that I am not just constantly battered by winds that change the landscape of my life? How do I see through every situation and activity to its core worth? How do I spend my resources of heart and mind and money and energy on what really matters? How do I look past the barrage of the tediousness in life and have eyes to see down to the root, to the thing that is of immense value? How do I not become undone in frustration trying to get Allistaire to eat, and instead fix my eyes on showing her love above all else? Yes, I am called to fight for her flesh and get food into her body to sustain her, but how can I do that in such a way that I am primarily caring for Allistaire’s spirit? Yes, I need to teach Solveig to not leave a trail of clothes and toys behind her, but how can I do that in a way that builds up the spirit of my little girl, rather than tearing her down. I am still relatively young in my faith and I have so far to go. I put my hope in God’s Spirit being at work in my heart, teaching me the way and showing me the path into His Rest where fear is diminished and worry begins to fade, hope fills the heart and peace infiltrates all the farthest reaches.
I put my hope in the seed, in that which God has planted in me and which He will tenderly nurture. I am land that looks more barren and desolate than I would like. I long for lushness and the extravagance of jungle, so thick with life. The life of the seed does not look like the life of the tree. On the surface, at this present time, perhaps I don’t look much different because of my faith, but there is at work in my heart that which God has promised He will unfurl into abundant beauty. I am plowed ground, ragged. I want the pay-off right now, here, in this time and this place. But what God is growing does not spring up out of the ground overnight. The glacier slides imperceptibly down the slope, gouging and ravaging as it goes. It’s impact is slow to be revealed but undeniable when seen and behind it is produced beautiful valley and habitat for life. I heed His word to me, I am expectant, I am watching, I am hoping and I am keeping my face turned to His radiance.
By the way, if you’re still a little confused by how we got from there to here, this is what happened: When Allistaire was first discharged from SCCA, everyone (as in myself and all the docs) were on board with the plan that if Allistaire’s chimerism tests were good, Allistaire and I would move home after getting her 7 days of chemo and we would just come back to Seattle each month for chemo and clinic appointments. Upon our return to Seattle on October 21st, I was shocked to learn that the GVHD docs wanted us to stay through one week beyond the end of Allistaire’s steroid taper because of the concern of a possible GVHD flare. I was incredibly disappointed and frustrated that this caveat had not been mentioned or discussed. Obviously I worked through it and willed myself to submit to the wisdom of the docs who simply have Allistaire’s welfare in mind. But I did request that rather than waiting until November 11th to be seen, perhaps we could have the doctors check in on Allistaire the week prior.
On Monday, 10/28, Dr. Pollard said that Allistaire looked like she was doing great and she suspected that the SCCA doctors would let us go home after our appointment with them two days later. I had slowly begun the process of sorting through all the stuff we’ve accumulated over the last 8 1/2 months but I was certainly not in full-blown packing mode. Dr. Pollard graciously offered to email the SCCA docs to see if she could get a more official approval of our plan to leave so I could proceed with packing. At that point I was challenged to come up with some creative explanations to Allistaire as to why everything in every cupboard in the kitchen had been pulled out. Dr. Pollard promised to email me on Monday, even if it was late. Monday passed with no news and then most of Tuesday as well. By 2:30 on Tuesday afternoon, I could wait no longer and called the clinic to ask Dr. Pollard for any update. At 5pm on Tuesday, 10/29, Dr. Pollard left a message saying we had a green light. I promptly called my parents and asked if they could come over the next morning and help me clean the apartment and load up their car with stuff that I would need again for our next Ron Don stays. I called Homecare Services and arranged supplies to mailed to our house in Bozeman. I called the pharmacy and at just before 11pm that night I picked up all of Allistaire’s med refills. I packed like a mad woman. I loaded the car. I dreamt of where I was going to fit everything – what should I take and what should I leave behind. I woke up Wednesday morning and packed and my parents arrived and we loaded more and more stuff out the door. At 12:30 pm Allistaire and I left to go to her SCCA appointment where Joan, the P.A., was impressed with how great Allistaire looked and gave us her blessing to depart for home. By 3pm, we were driving away from a cleaned apartment, my parents in their loaded down car and off toward the east, to Spokane for the night. We left on our 100th day in that Ron Don apartment, over 250 days since we’d left home. On Thursday morning, we began the last haul for home and arrived in Bozeman just in time to surprise Solveig at school and head down Main Street where the whole town comes out for some trick-or-treating. When Allistaire’s transplant had been scheduled in June, I counted the days and had hopes that we would return home in October. When her disease was still present post-transplant, that seemed no longer possible. But, on October 31, 2013, I walked through the door of my home with my sweet little girl, hopefully still in remission, but determined to soak up and enjoy our time together, no matter how long or short it may be.