With elation and with delight at the sunny afternoon we drove down the hill of the hospital campus. It was nearly four o’clock and we were just leaving the hospital on the day that was supposed to have been free and open, simply asking to be filled with some adventure only the Seattle area could offer. Instead, an ANC that was trending down forced yet another set of labs and visit clinic appointment. The doctor we saw the week before didn’t want to have Allistaire’s lines pulled if her ANC was going to be low and put her in a vulnerable position, possibly needing antibiotics. And so it had happened again, a seemingly ordinary visit to clinic resulted in another little bomb going off, this time Allistaire might not be able to get her lines pulled as scheduled. And here’s the thing, lines get pulled precisely on Tuesday mornings, only on Tuesday mornings. In addition, they only have a few available spots on these sacred Tuesday mornings and so they tend to get booked up weeks in advance. Not getting her line pulled on Tuesday, March 4th would mean either having to stay much longer in Seattle or another trip back out. But there it was, the super awesome, fatty ANC of over 2,000, and so we stepped lightly out the door of the hospital on that Monday afternoon, lab results clutched in hand.
I smiled as I drove down the hill. We were going to get to go home the next day and not just home, but home with no more lines. Allistaire was officially done with the current plan of treatment. She had completed her seventh round of Azacitidine just the day before and we were not scheduled to return until the first week of June for her one year post-transplant followup. With a bit of terror I had asked Dr. Gardner no less than three times, was she sure, like really sure that Allistaire didn’t need another bone marrow test before then? With a smile she repeatedly said, “No.” And so miraculously we were once again released out into the wild of ordinary life. In only a few short hours we would be heading east on I-90 with months at home ahead of us. The sun sparkled all over the furiously budding plants. Everywhere spring was bursting, daffodils and crocuses and the outrageously extravagant purity of the cherry tree blossoms against bluest sky.
Here and there I cast my gaze on the life unfurling once again, joyously mystified that the world had really rotated all the way around, bringing us here to this most delightful season. And there, through the glare of sunlight, I squinted to see what scene lay down the hill at the top of the staircase leading away from the River Entrance. This crest of stairs I have climbed so many times, heading to the patient family parking, always a sense of disorientation, of joy at being released out of the confines of the hospital, into the absurd wideness of the rest of the world going about its day. Yes, it was the woman I thought I recognized, but whose name I still don’t know. And she seemed to be crying, hands up around eyes, bent shoulders and surrounded by a throng of family. As we neared my observations were confirmed but my mind spun round and round trying to place the source of her sorrow. I just saw her a few days ago at Ronald McDonald house, smiling and waving at me as she ascended the stairs toward her room, her little boy hoisted on hip, bald head, feeding tube and smiling eyes to match hers. What could it be, oh God, what could it be?
Allistaire and I drove on, the list of tasks to complete before we had to be at the hospital the next morning at 6am weighing heavy. Thank goodness I’d thought to go ahead and get the oil changed but still we needed to fill up the gas tank and pack up our room at Ron Don. But news of Snoqualmie Pass being closed because of avalanches with no known reopening time confused my choices. I was yet again met with plans upturned and forced waiting. Near dark we pulled into Ron Don and I saw her again, wiping tears from her eyes, a brief embrace with staff and a hurried walk to her van. “Anita, Anita, what is it?” I called to the house manager. I knew she could not answer me, she was not allowed to say but I knew from the tears in her eyes and the downward turn of her mouth. I rushed up to the passenger window of the van and knocked hurriedly, the engine already running. And there I beheld her face in the lamp light, tears streaming and a picture of an adorable little boy, head covered in an amazing wealth of dark curls. Her face was strained and seemed to implore as she repeatedly pointed at the picture, “Mi nino, mi nino, mi nino.” I glanced further into the darkened car to see it filled with their belongings and the grim face of the father, hand on gear shift, impatient to leave. I backed away and let them go. The language barrier allowed not even for condolence and I prayed my face had shown my sorrow and honor of their child’s life. For two years we have crossed paths, coming and going to appointments, always with smiles and waves and hopes that such could communicate where words were impossible.
Salvadore. He died that morning at 9 am and the halls filled with her wailing.
Then they just drove away. There was nothing left to do and a car seat empty.
Twenty-four hours before, I read of 9 year-old Zach’s death on February 7th. Dead from complications from the chemo, Clofarabine, given in his third transplant only weeks prior. Like Allistaire, he too battled hard against AML. Allistaire had Clofarabine as part of her transplant regimen. It seems to have played a major part in saving her life, but it could have also been her death.
Pack and forth, my heart slams around. Elation. Devastation. Head lifted to take in the sun and shoulders crushed down.
Snoqualmie reopened. We would be able to leave after her line pull in the morning. Lookout Pass at the Idaho-Montana border and miles east into Montana then closed because of more avalanches. I could head home but how far could I get?
My joy at this release and hope for the long road of life ahead tempered. I keep seeing her face and hand fervently tapping the photo crumpled from being gripped so hard. As before, everyone wants to hear that Allistaire is well, that she is fine, that this season has passed. I look at those spring blossoms and consider that this is the third rotation of our planet where cancer has saturated our days. She’s fine right? The words yell at me without sound, “Time to move on. Phew, glad that’s over.” For some reason that Portlandia episode comes to mind where they keep saying, “Put a bird on it, put a bird on it,” as they rush from one object to another, emphatic that adding the imagine of a bird will make it look just so cute, so hip, so right. Okay, brush off your hands, pack that away and move forward – she’s going to preschool next year, right? And inside I crumble and scream, “I don’t know! I don’t know! How in the world should I know?”
I wake up in the morning and stare at the ceiling. I lay there. I really should get up, but I am baffled by what I’m to do. What exactly is this day supposed to look like? How should I be spending my time, because how much time do I actually have anyway? I look around at my life and I see that I am behind in seemingly every direction, every avenue shows evidence of neglect and loss. Time to get back to exercising, time to try to look like a cute, fit, outdoorsy Bozemanite. Time to buy skis at the ski swap and get back to book club. But there’s wreckage, see? Images of a town laid flat by a tornado come to mind. Folks wiping away tears as they search through the rubble of their once home. But I fidget and twist, annoyed that this image does not fit the terrain of my life. Not that I want such a scene to be indicative of my life, but I grope for contours, edges, corners that do define. For there is wreckage but too there is clutter and also beautiful, jagged rocks jutting out, exposed by erosion and storm. It is not just the task of clearing debris and rebuilding, no I survey and wonder what stays and what goes? Where do I build? What do I build? And all the while I am just so tired.
We arrived home on March 5th, the day before Allistaire’s 4th birthday. The immediate task before me was to unload the Suburban once again and put everything away. Even this overwhelmed me. But what do I do with all this stuff I had for our life at Ron Don? There sat my Trader Joe’s bag that permanently housed the purple flip-flops I wore in the shower at the hospital and the purple cup I drank out of, refusing to go so far as to succumb to the hospital paper cups. Even decorations purchased to make our room in Seattle feel a bit more like home – they perplexed me. The broom and dustpan are redundant as we already have the same in our house here in Montana. Oh gosh, I just don’t know. Do I give it to Goodwill or pack it away? The majority of tasks repeat the question of what’s going to happen. Are we done? If not, how long do we have? How far back into the closet do I store that bin? It’s the question no one can answer, despite many attempts. A second relapse of her cancer would be still worse than it was the first time. The options have dwindled to less than a handful – either a second transplant or various clinical trials.
The pressing need to have a birthday party for Allistaire staved off the questions for at least a week and a half. The woman who once planned and executed bullet-point actions with finesse was nowhere to be found. I had no idea what sort of party to plan and had only come up with a date after her birthday had already passed because for a long time I didn’t even know when we would be home. But really, what could we even do, I whined. She can’t be around kids or animals or crowds and it’s snowing outside and stinkin’ cold. I bustled around putting things away, all the while consumed with the looming necessity to hurry up and figure something out. I mean, this was her fourth birthday, a birthday that several times I sincerely thought would never come. I could still see my hands pressing down the tape on the pink wrapping paper a year ago, wet splotches from tears marring the paper, wondering if I would ever again wrap a birthday present for her. But here we were. God had brought us through. Another year of life generously, mercifully given. What sort of party could possibly celebrate such a wonder? The party was insufficient in its glory to reflect the glory of another year of life, but it was pretty fun, both to plan and experience.
Pirates and mermaids. That would be perfect – two things Allistaire loves and as I looked around my house I realized I had a ton of stuff already that would totally work (more for the mermaid part than the pirates :)). I exhausted myself that week, fueled at last by purpose and a clear-cut goal. Amazon Prime delivered pirate hats, a pirate flag and parrot, fake coins for the treasure chest I needed to paint, sand to set candles in and a sweet, blood-thirsty looking shark pinata. Oh, and there was also a really gorgeous mermaid costume Solveig picked out since she had outgrown the one she had from Halloween years back. Sten spent evenings constructing a pirate ship out of cardboard boxes with cannons and an anchor. My sister-in-law, Jo, helped me put together a treasure hunt complete with a message in a bottle, a treasure map, clues at each stop and super silly activities like seeing who could shove the most marshmallows in their mouth and still be clearly heard saying, “Chubby bunnies talk funny.” Dinner was to be cheese fondue, elk steak, kale caesar salad and tiramisu, all at Allistaire’s specific request, or perhaps I should say, chosen because these are her favorites, except the salad – she won’t touch anything green. Long after the left-over cheese fondue from Christmas dinner had been eaten up, she kept asking for, “pondue and steak.” Long after her birthday party was past, she kept asking for some more of that, “brown and white stuff,” (tiramisu). We had a wonderful evening and delighted in seeing one another dressed like pirates and glammed up like mermaids. Through tears and a brain muddled with emotion, I stood at the dinner table and attempted to express my thanks for a life sustained and the marvel of the overwhelmingly glorious and unguaranteed gift that life is. Likewise, Sten through tears thanked his family for the tremendous support they have been in numerous big and small ways over the past year.
A week passed with another doctor’s appointment and Allistaire’s first labs drawn from her arm in a long time. “A pokey,” we call it. With this first pokey we’ve begun a Tuesday tradition of going up to Murdock’s Ranch Supply after clinic and purchasing a little seventy-nine cent rubber animal in reward for her bravery. St. Patrick’s Day marked Allistaire’s very last dose of prednisone and my first attempt at baking a loaf of bread, Irish Soda bread. Being a Murphy by birth, I thought I should do something to celebrate and so I also made Hoppin’ John only to remember later that day that Hoppin’ John is the traditional southern dish to celebrate New Year’s, not St. Patrick’s Day. Oops. I tried. And now that Allistaire was completely devoid of immune suppressants, we watched with vigilance for signs of GVHD, her donor cells rearing up to fight her flesh once again. Thankfully, her appetite only seemed to continuously improve with no signs of pain or discomfort and she continues to slowly gain weight. We breathed a sigh of relief that there did not seem to be any gut GVHD happening. But then there was her face, growing steadily more red and oddly, around her eyes. I am finally, actually learning to chill out a little with all these ebbs and flows and mysteries of Allistaire’s health. At long last, I can actually remind myself that if it’s something significant, it will make itself known, and lots of things will just go away on their own. More significantly, I am working at the practice of bringing my anxious fears more swiftly to God rather than fretting over them for hours or days first. And wow, it actually works. It’s not like the relay race I thought my burdens were where I carry them for a while and then eventually hand them off to the Lord. No, more and more frequently, they barely graze my hands before they’ve been delivered over to Him.
On Friday evening the 21st, I had the joy of attending my second Bozeman 3 board meeting. Clustered around the table was a small group of people trying to put their hearts into action. I participated in the conversation, giving an update on Allistaire and listened to the updates on Caden and Stellablue. We discussed the fact that our 501c3 non-profit status is still pending as the IRS is still working on applications from May 2013 and ours was submitted in September 2013. We brain stormed fundraising ideas and the upcoming events including Garage-A-Rama at the county Fairgrounds and the Dodgeball tournament to raise funds to support pediatric cancer research. I had been setting things aside for a while and asking others to do the same in anticipation of having a garage sale in early summer where all proceeds would go support the Bozeman 3. Then suddenly in a week’s time we instead would be setting up our stuff at Garage-A-Rama where we had been donated a booth. I offered to make some posters as a means of communicated who we, The Bozeman 3, are and what we’re about. Jason, Caden’s dad, helped crystallize our mission – The Bozeman 3 is about 3 things: financially supporting other Gallatin County families who have a child with cancer, provide emotional and social support through mentorship with another family whose child has had cancer and to support pediatric cancer research. I left that night excited about the work ahead and humbly overjoyed that we, we broken and few people, could actually make an impact and help others on this very hard road. And I left with a list of tasks that then consumed the coming week.
So I wrote and labored over wording and printed and cut and taped and picked colored poster board and paper and it all felt like I was putting together a junior-high science fair project. And I laughed and smiled with the delight that we were, in these ordinary moments, laying the foundation for an organization that really was the unfurling of years of sorrow and pain and fear into hope and love and camaraderie. We had passed through the fires and were not dead, and not just not dead, but really more alive. Life still pounds furiously in our veins and our hearts swell with passions grown out of endless hospital room hours and tests and medicines and isolation. Pam and I would soon stand at the top of the “M” trail which overlooks the entire beautiful Gallatin Valley and the surrounding ring of mountains. We stood with our children, all of our children. Caden and Allistaire made it all the way to the top, through challenging terrain and with cheery determination. Pam reminded me that we had once talked, rather dreamed, about the day we would hike the M together, our cancer-free children at our side. Throughout all these days and activities, through throngs of people at Garage-A-Rama who would ask the price and we would sing out – it is whatever you want to give, it all goes to support children in Gallatin County who have cancer, through the fevered joy and sweat of the Dodgeball Tournament where the pictures and stories of some twenty children lined the wall and people came together to nail each other with bullet like balls and children danced in bouncy houses, and around that crowded board meeting table, I smiled and smiled and my heart swelled.
So there is wreckage, but most certainly not just wreckage. The wounds are deep. The pain is wide and aches, it is sharp and stings. In the parent group time this morning at Cancer Support Community, when given the opportunity, the rush of heat and tears flowed easily, despite the fact that I don’t cry too often these days. But there it is, these sorrows pooled and so easily torn open. I have heard it said quite a few times and my friend reiterated it the other day. We could never have chosen such a road, but, but, we would not now wish it to have never been. That is the mystery and is most assuredly the greatest delight of my soul, to see the Lord’s redemption of what has been lost and broken. How God does and will continue to raise the dead and bind up the wounds of the frail and broken. It is the mystery of rising up strong when you have no strength left, but the Lord swells in and through you. It is the uncanny and other-worldly beauty of these paradoxes that draws my heart closer in delight to my God. I look and see how He breaks and severs and robs. He ravishes and tears and lets me sit in the dark. He lets me fall. How can this be? This is not what a good God should do! And yet, He audaciously takes useless dust and breathes not just life, but HIS life into it and what was once temporal has become eternal. He sends through the fire and the torrent of flood, a destruction and a revealing. So I stand and survey the landscape of my life, the terrain before me.
Allistaire’s red face turned out to be a drug toxicity reaction to her anti-fungal drug, Voriconazole. The transplant doctors have seen it before and had us discontinue its use. She’s been on it for over a year to treat the fungal nodes that have grown on her lungs throughout the months of such severe immune suppression. Ironically, only in the last few weeks had I really been adhering strictly to the guideline of giving it one hour before or after food. Until I saw the instructional sticker on her most recent prescription, I had only been waiting 30 minutes between her morning dose and breakfast and even less at night since she takes so long to eat, finishing at nearly bedtime. My guess is that in more carefully following the directions, she was actually getting a higher dose than ever before and all her recent time in the sun only served to exacerbate the rash on her face. The plan was to do a CT in Bozeman and hope that the 2mm fungal nodes, detected on the CT a few months ago, would be gone and she could drop down to a less intense drug, Fluconazole. Dr. Ostrowski also wanted to check her blood sugar level because it had seemed a bit low the past few weeks. So the Friday that we brought our loads of stuff over to Garage-A-Rama, Allistaire had a Cat Scan and a finger poke to test her blood sugar. The latter was fine, but Seattle’s review of the CT determined that the fungal nodes had actually grown in size upwards of 1cm and were more numerous. They would prescribe her a new drug, Pasaconazole, which costs nearly $5,000 per month. It was a bit of a bear to get the pre-authorization through with insurance but just days ago she began her first dose. The hard part of it all to swallow was the requirement that we return to Seattle for a CT once she’s taken the drug for four weeks. If the next CT does not show a reduction in size and/or number, they will do a biopsy to determine if it’s something other than fungus. The other options would be some sort of collective pneumonia related to GVHD or it could be leukemia. That old fear of entrapment seized me. Seattle, despite being my home for so many years and a place I love, these days feels more like walking into a concentration camp. There is always the sour fear of death, and if not death, at least long-term imprisonment. May 5th we go back. We drive the 700 miles and hope to find housing for a stay of unknown length. If all goes well it could be a trip only for a day and if not, well then, that I don’t know. The sense that my life feels like walking through a mine field was validated once again.
I gave my friend the update on Allistaire because I wanted her to pray for me, she who lost her husband to cancer, her husband who she lovingly called her “True North.” “Give thanks Jai,” she said. She wasn’t being flippant. She wasn’t being dismissive. She was speaking God’s word to me, words that help reorient my heart to my true north, to the anchor of my soul. It’s been a month since we’ve been home. I cannot wait to live until this is all past, until Allistaire is fine, until my life is all cleaned up and I can fit into my old pants again. And it is not as simple as a clean slate. The old and the new mingle. The wounds and wreckage and clutter sit side by side with the unfurling spring and strength and beauty. The pain and the joy co-exist. I don’t really know the way ahead. I am still not clear on where to rebuild and where to clear away. But part of the beauty is that this bullet-point task-oriented girl is growing happier and more at rest just sitting in the midst of it, because I am with my Lord. I might stand up and strike out in this direction or that. I might be hard at work, toiling under the sun, rejoicing over the simple joys of this life I have learned to treasure and gather up. All of sudden another knife might sink deep into my gut, with the gush of sticky hot blood. My fear is falling away from me. I am less burdened. I am less shackled. Maybe it is because my belief in this wild, unruly God is becoming more enfleshed, filled out. I am no longer just seeing God, but more and more tasting that the Lord is good and that all of my life is wrapped up – consumed by this uncontainable Being that I can never lose.
Countless times in God’s Word He calls us to remember, to look back and give thanks. Remember. Give thanks. Give thanks for what has been and in so doing, be emboldened to give thanks for what is and what is to come. I look back to that grey December morning when my heart had first been torn asunder. I looked out at those black green trees, clouds rising like spirits and I had no words but help Lord, my God help me. Be expectant. Look for the bounty I will unveil. Stake all your life and hopes in me. Be expectant. Lift your eyes. These were His bitterly sweet promises to me. And so I have looked for Him. I have been watchful for bounty. I love, love when Christ said, I did not come to bring life, but life abundant. How extravagant is my Father. The jewels of His faithfulness I cradle in my palm, in my heart. In a way they don’t look like much, not too impressive. But like seeds, the life that they are growing up is glorious and I continue my search for His face and His goodness. The name Joseph gave his son so beautifully echoes my heart, the pains and joys that dwell there.
Genesis 41:52 “The second son he named Ephraim and said, “It is because God has made me fruitful in the land of my suffering.”
Here’s a few pics from exactly one year ago. Allistaire had begun her second round of chemo since relapse – far earlier than expected because blasts had shown up only 16 days into her first round. The doctors didn’t wait for her blood counts to rise, they just hit the cancer again. She was 37 days with a zero ANC. It took 40 days for her to lose her hair and then it went quick.
And here was life two Aprils ago in 2012
My heart is filled with joy for the release from Seattle and clear labs. I will pray that the nodes clear up with the new med! I wanted to share that Mason had the drug toxicity to Voriconazole as well. I believe they were referring to him being when they had seen it before because he went months before the dermatologist was the one who realized what was going on. He had a red face, moles and the worst part was his lips would have a seemingly never ending sore that would bleed, dry, crack and bleed again. We could not figure out why his lips were doing that. Thankfully the dermatologist figured it out and he has been 100% better since. I’m glad that through his suffering we were able to help Allistaire avoid that fate. Love you and continued prayers for you and yours!
The mermaids, the toothless wonder that is Solveig, the wonder and miracle of hiking to the M – my heart is full for and with you, even as I tell Blake with a heavy heart about the spots on A’s lungs. You speak truly about never having chosen this road, but not being able to go back and choose a different one. God has changed me in myriad ways due to grief and suffering and loss. I am better for it. I would never choose that.
But I trust that when I see His full plan, I will say confidently, “Yes, and amen. That was truly a beautiful thing, Lord.”
I’m not there yet. But I’m closer than ever. We continue to love and pray for you, and I dearly hope to steal you away for a cuppa one of these days to actually get to know you face to face. Smooshes and loves to those precious girls of yours!
Praise Jesus. What a blessing this post is. I am so sorry for the loss of the Ron don friend. Heart breaking.
Thank you for the update!
Dear Jai and family, The Lord has certainly made you fruitful in the land of your suffering..as he always does..and this is such an improbable, counterintuitive miracle. I read once, from a mental health point of view, that the hardest thing is unpredictability. Prisoners, abused children, can deal with daily beatings because they are expecting them. But this not knowing is so very draining…yet somehow He has strengthened you and so many good things…garage sales, board meetings.etc. are coming out of ths limbo. I will continue to pray for peace. And I do rejoice that you are home and have pulled off the pirate and mermaid party to celebrate so many things. LOts of love, Robin Owen
What wonderful news for your family. Anthony and I have been praying for all of you. Blessings!!