When Allistaire’s relapse after transplant was confirmed, Sten and I asked the doctor about the possibility of bringing Allistaire home for a visit. We were told, “No.” From what I understand, the reasoning for this is because of how little is known with this chemo, Azacitidine, in pediatric patients post-transplant. It has rarely been given to children and they have seen flaring of GVHD in adults as blood counts begin to rise toward the end of the four-week chemo cycle. The potential for dangerous flaring of GVHD coupled with an extremely suppressed immune system, due to both the realities of transplant and chemo, made the risk to leave the safety of the medical care here in Seattle too great. We easily consented to this guidance – we have worked far too hard and long to protect and care for Allistaire, to take unnecessary risks now. My sweet parents, however, wanted to support me in going home for a visit and prepared to take on learning more of the details of caring for Allistaire including caring for her Hickman Catheter, and following the detailed med schedule and dosing. At first I resisted their suggestion of going home for a visit. Out of sight, out of mind…sort of. The thought of going home felt both like a glorious relief and something to stuff away. Ever since the days I was forced to eat lima beans at dinner, I have learned “delayed gratification.” Slam down the nasty packets of chalk (a.k.a. lima beans) and get onto eating the good stuff. Sure, pretty things at Anthropologie and Mexican Cokes can often cause me to forget this important life lesson, but in many ways it is one of the most powerful directors of how I live my life. I mean, really, being a Christian is ALL about delayed gratification. “For the joy set before” me, I endure. Being separated from Solveig and Sten and this daily grind of cancer-fighting, is all about doing what is necessary, that we might eventually achieve the desperately hoped for gratification of being reunited as a family, full of life. To give into going home felt like eating a bit of the most decadent, craved for food you can imagine, only to find it followed by a plate full of nasty lima beans. I wondered how much harder it would be to endure this pseudo-life in Ron Don, if faced with the tangible glories of Montana, my own home and my two sweets.
Now that the road stretches out into the blackness past October, I relinquished, and began to plan a trip home. But what nobody knew except our immediate family, is that I decided to push for Allistaire to go home for a week. I asked again, and with hesitation, was told, “maybe.” It’s reasonable you know – I mean, we are talking about Montana – what do they have out there anyway? Still probably making people bite on sticks while their mangled leg is doused with some booze and sawed off with the same saw that just cut through that tree yonder. That’s not so far off in one way – less than a year ago, the Big Sky State could boast its first and only pediatric oncologist. We’re a little short on the super fancy stuff out there in the land of glory, but a good pediatrician we do have. I emailed our sweet Dr. Ostrowski, and parroted back the questions I was told to ask, questions I myself didn’t fully understand, and in the midst of her own camping trip, she responded with as much detail as she could out there in the woods and promised to get back to me quickly with full details. So began the process of assessing the medical support available to Allistaire in Bozeman and the myriad of details connected with getting a little baldy-top back to her homeland. The most challenging component was figuring out how to get home. Should Allistaire spike a fever, which would very likely be a sign of infection, she needs to ideally be on antibiotics within 30 minutes. This protocol is twice as fast as the standard at our home hospital and would require specific pharmacy instructions, not to mention a pharmacy and hospital to administer the needed meds. One of the best parts of the 700 plus mile drive between Seattle and Bozeman is the wide open stretches of wilderness which is conducive to the refreshing of the soul but not to speedy medical attention. So while driving offers flexibility of timing, it is rather risky. The obvious answer was to fly home as it is only about an hour and a half flight. The down side of flying is that you are stuck in a small space with some potentially sick folks hacking up a lung – not really optimal to the immune suppressed. On top of it, the doctor was willing to let Allistaire go only if her ANC (Absolute Neutrophil Count) was high enough and seemed relatively stable. This meant it needed to at least be over 500 and not dropping. So two weeks ago I was rushing around taking Allistaire to clinic and her additional Day +80 appointments, gathering all the random medical supplies, refilling prescriptions, hoping the TSA would let me bring a ridiculous amount of strange fluids on-board, communicating with Dr. Ostrowski about preparations for Allistaire’s care in Bozeman, trying to arrange flights, all the while watching Allistaire’s ANC fall and fall yet hoping desperately it would stabilize. I went from willing delayed gratification, to raving hunger for all of us to be together at home.
“Can you check to see how many seats are left on the flights?,” I asked the lady at Alex’s Lemonade Stand, a non-profit which helps with travel costs to and from treatment for pediatric cancer patients. She said there were only one to three seats left and I asked her to please go ahead and book the flight with the ability to cancel if necessary. That was going to cost an extra $100 dollars. Good grief, they were already paying nearly $1,400 for the flights, I pleaded for her to pay the additional cost to secure the flight and not end up losing a day at home. Allistaire had not been home in seven months and there was one tiny, seven-day window of time before her next bone marrow test and the beginning of the next round of chemo, to squeeze in a visit home. The deal was that clinic occurred Thursday morning and we were insanely, trying to fly out that very night, if her blood counts were high enough. Wouldn’t you know it, even though we got there early to have labs drawn, they were taking forever to come back. We met with the PA and doctor and all the while the nurse madly kept hitting “refresh” on the keyboard in attempt to force the blood counts to materialize. At last the number came up: 1,800 – a perfectly fat and happy ANC and a joyous cheer that we were going home. I sat Allistaire’s sweet face right in front of mine and told her that very night we would be on an airplane to go home for a visit to our house in Montana with Sissy and Daddy. Her jaw literally kept dropping as she repeated everything I said back to me in the form of a question, to which I answered, Yes, Yes!
Then there was that moment that we, the very last people off the plane, in an airport nearly shut down near midnight, rounded the corner and Solveig caught sight of Allistaire. She suspected I was coming for a visit but could not have imagined she would be seeing Allistaire. Solveig came running and they knocked one another over in bear hug in the middle of the airport floor and Sten and I cried as we approached each other and could not stop as we held one another. How I long to return home at last with a little girl rid of cancer, but oh, how sweet this was. When we arrived home and I stepped out into the black night I felt like Allistaire that first time she was released for a few hours out of the hospital after being trapped inside so long. On that day she cried out, “A tree! Look mom, a flower… a bird.” On this night I looked up and it was as though I had never really seen stars, so beautiful and innumerable were they. And this is what last week was like – everything more glorious and precious and delightful and beautiful than you could imagine and every little thing I wanted to savor. Just to sit at the kitchen counter and eat pancakes together was gift upon gift. To watch Allistaire and Solveig roam the house, building forts, making up games and playing dress up, summed up my greatest earthly joys. I cried a lot. I cried for joy and I cried in sorrow. The calendar was still turned to February. There is a way in which life just stopped. There were ways in which it almost seemed that someone had died and all had remained just as it was on that last day of life. There were also ways that evidenced the passing of seven months without my being there. Time both permanently stalled and kept on relentlessly moving forward with no regard to the missing. I ended up doing far more cleaning and organizing than I would have thought would consume my time. But there was a way in which this was pleasure. It was odd joy to take hold of elements of our home that showed the neglect of my absence. Sten has done an amazing job maintaining his responsibilities at work, keeping up our house and caring for Solveig. Nevertheless, it is more than any one person can handle and there are tasks which are solely mine. I think at the core I saw so clearly how my life is overflowing with abundance and joy and it really is these simple bits of just living and dwelling with one another. Life is rich, so, so rich it is staggering. How easy it is to be discontent and want more, more, more. And I still want to change the color of the house and get rid of the mustard colored bath tub and drop ten pounds, but wow, life is really so good. So good it made me cry, over and over.
We had a wonderful packed week. The first night we were home was the only night we had alone as a family. The next six nights were filled with getting together with each of the brothers and sister-in-laws, the family as a whole, date-night for Sten and I and dinner at the Shraugers who are home at last with a little NED boy (NO EVIDENCE OF DISEASE in Caden!!!!). Solveig and I spent a day going to a few antique stores and eating at her favorite spot out on Gallatin Road, The Coffee Pot, where she delighted in her much longed for cinnamon roll. Our big family dinner up at the parental-units house, was just as it has always been – Lowell’s great steak and peppers, ridiculously garlicy garlic bread, a crazy good green salad thanks to Jo who finally made enough and a well thought-out, love imbued dessert by Jess. We drank wine and amazingly tasty drinks by Sten and let the kids run wild in the rec room downstairs. It was a wonderful time all together. Allistaire did great and we faithfully flushed her lines each day, gave her meds and changed her caps and dressing. She even played outside for a few hours with Solveig and supposedly managed to not touch rocks, dirt, sticks, grass or trees (all containing dangerous fungus). On Tuesday she went into have labs drawn and to be looked over by Dr. Ostrowski. Allistaire looked great and her GVHD was pretty much unchanged. A sweet nurse, Alicia, from the adult cancer care unit, came over to draw blood from Allistaire’s Hickman, much to her relief. Her first words as we walked up to the hospital in Bozeman, were, “Am I going to get a pokey in my hand?” It was such a gift to spare her this terror. Strangely though, her platelets had risen from 137 on Thursday in Seattle to 317 on Tuesday in Bozeman. The docs in Seattle requested labs to be redrawn on Thursday which resulted in platelets of 525 and an ANC that had dropped to 750. There was some concern that she might be getting sick, regardless of there being no outward indication, but it was decided to hold off on prophylactic antibiotics. On Friday back in Seattle, her ANC was up to 1,670, platelets down to 334, hematocrit a shining 40 and her liver function tests were virtually, perfectly normal (AST 31, ALT 42), and still no indication of illness. Our last bits of time together with just the four of us involved a lovely walk down the driveway (.4 miles long) and then down Kelly Canyon Road a bit. It was, all in all perfect, aside from cancer. It was a spectacular fall day with bright sun, blue skies and cool breezes.
Yes, there are more than a hundred-thousand things I could want on this earth, but really, this right here is all I really want. I want this simple beautiful life with the four of us. It is decadent gift from the Lord but at the same time I know this isn’t what He promises, this is not ultimately what life is about. I do believe it is about love and relationships and I have been bountifully given these on this earth, but when it comes down to it, right down to the bedrock of life, ultimately this life is an opportunity to taste of the Lord and see that He is good that we might dwell in relationship with Him eternally. Second to this is the hope that God’s beauty and grace and truth might be seen through this one weak life, that others would be drawn to drink deeply of His heart and know Him truly. So I’ve devoured my delicious time at home, and I savor its sweet taste in my mind as I survey various moments over the past week. But I choose to look for more than lima beans in the days ahead. It was hard returning to Ron Don. It was hard that it felt so normal to be here and I heaved sobs as I considered the possibility of the days ahead. I did force myself to ask Dr. Ostrowski out loud about hospice in Bozeman, but I CAN NOT imagine bringing this sweet, wild-cat of a girl home to simply die. I absolutely don’t know how to do that. And more, the truth is, I don’t know how to live our life without her. I see Solveig’s cheery little face in my mind and I mourn and mourn that I do not know how to conjure up the joy and silliness that Allistaire offers and that, in the face of death, I fear I will utterly lack. I imagine a walk down the road with only three of us and know I can not match the enthusiasm for the rocks along the side of the road with which I long to greet Solveig. I fear that with the loss of Allistaire, so very much will be taken from Solveig. Perhaps this is my greatest fear, my greatest sorrow. What will become of her? Who will this solitary Solveig be? I am already so very entrenched in soberness and sorrow, I simply don’t know how I can care for my beloved Solveig the way life with Allistaire fills the air with ringing joy. I ask the Lord, Oh God, how much will you take, how deep will the cuts go. The problem with having an imagination is that you can imagine. The problem with being empathetic is you can empathize. It is easy for me to imagine a life without Allistaire and it cuts and burns. What I can’t imagine is how the Lord will redeem this. “How are you going to bind up this mess,” I cry? How are you ever, ever going to make this ugly – beautiful? How will your transfigure this woe? I yell out into that steely grey wild stormy evening sky, and plead for Him to make His face seen. Oh God, Oh God.
He doesn’t answer me as I want. I don’t hear His voice. There are no visions. But there are four things which hold me firm in Him. There is first the glory of nature around me that everywhere declares His presence, His majesty, His beauty, His power, His infinitude. All creation shouts His presence. Then there is His Word. Oh there’s plenty in the Bible that seems odd and I don’t understand and there is plenty that defies my logic and whose wisdom and beauty so clearly dwarfs my mind. There is a story there that is so hauntingly “other,” that I know it not to be fiction, but THE story, the meta-narrative. The third binds the past with the present. There are men and women in the Bible, in history and in my present life whose lives declare the working of a good God. There is the communion of Spirit. And there, that undefinable, indecipherable part of my innards, that has heard the Lord, Creator of the heavens and earth – the thing is, He has spoken to me. Over and over and over, He has guided my heart and mind. I often consider what I believe and I can see that it seems mad, stark crazy. But then I consider too a world where all that the Bible claims as true is withdrawn and all other possibilities rise up, and I see that as crazier still. Sometimes I stand with Peter and answer the Lord. Sometimes I say, Lord, this is a hard teaching – it is hard to accept that You, who could heal Allistaire, may choose not to. It is a hard teaching that this life is fleeting and does not begin to compare to worth and glory of the life to come. My eyes tell me otherwise. My heart so bound to Allistaire in this life, despairs of this severing. Yet I have seen enough with my fleshly eyes and the eyes of my heart to see that there is more than what is tangible. I have begun to taste of mysteries, and I cannot turn away, not because I am forced, but because I am compelled. I am being wooed by the God of the Universe. So daily I hand over the woes that can fill my imagination and I battle to take hold of the day given. I turn my attention to the sweet dimpled face before me. I attend to the work at hand and I rejoice, and wrestle, to let God be God, though He will be regardless.
Allistaire has completed three out of seven doses of Azacitidine. Today she also had a blood draw for lipids and cholesterol and an echocardiogram. In addition to chemo and clinic this week, she will also have a CT scan, with contrast, to look for cancer and track the status of the fungal nodes on her lungs. As it so often seems, in mere days, my little world might sway dramatically again as we await results from her bone marrow test and the CT. I take comfort in knowing, He has gone ahead of me and all is known to Him and all is carried and cared for by Him. Lord show me your mercy, show me your grace.
“On hearing it, many of his disciples said, “This is a hard teaching. Who can accept it?”…66 From this time many of his disciples turned back and no longer followed him.67 “You do not want to leave too, do you?” Jesus asked the Twelve. 68 Simon Peter answered him, “Lord, to whom shall we go? You have the words of eternal life.69 We have come to believe and to know that you are the Holy One of God.” From John 6