Tonight I listen to Ola Podrida because this is my music of two years ago. Two years. December 1st marks two years since this all began. On a mellow winter afternoon on December 9, 2011, I was told cancer cells were found in Allistaire’s bone marrow. Time slows, distorts, your body acts and your mind chugs to comprehend. On December 10, 2011, Sten and I were told that Allistaire had Acute Myeloid Leukemia. It’s been two years, two strange years and it always seems to be winter. In a few short days it will have been six months since Allistaire’s bone marrow transplant. I now know four kids that have died of AML, all in just a little over 6 months. The eyes of eight parents, bereft.
Marleigh died yesterday morning, tucked in bed between her mom and dad. I remember the day I met Marleigh and her mom Becca, excited to meet the only other person I’ve known on the exact same path, the same clinical trial. That was May and it was Spring and there was hope. I remember standing by the elevators outside the Unit toward the end of July, excited and jealous on the day Marleigh was discharged from the hospital and we were still stuck inside. She was covered in extravagant, childish color from head to toe and great big, stylin’ sunglasses. Often as I drove up to our apartment at Ron Don, I would look up to see Marleigh’s various purple and pink doll toys set up on their balcony in the sun. Coming or going, we would run into one another, checking in on any updates. I remember Becca’s slumped shoulders when she relayed the news that cytogenetics had shown the mutated markers of Marleigh’s disease. I remember fearing it would be our own fate, and then it was. And so chemo began and hopes of visits home. I remember the day they were packing to move home to Spokane and I confessed my fear to her that the SCCA folks were letting the two of our girls go home because really they’d given up on them and didn’t have the guts to say so.
Since then I have regularly checked Marleigh’s Facebook page, Miracle for Marleigh. I don’t know how to comprehend it. On Tuesday Marleigh was sitting on the bed with her cousin making a wish list for Christmas. Thursday morning at 3:03am, her spirit has flown from this world, leaving only her broken body with the other-worldly blue eyes, now lifeless. I walk into Allistaire’s closet and I see the dresses, the shirts and sweaters. I think of Marleigh’s doll toys, sitting in her house, Becca wandering from room to room. She’s gone. I look out at the snow-covered trees, the blue of hills and shadows and I know that death is common, but yet it is incomprehensible. No matter how close we have skirted it, it remains at an impossible distance, a reality impossible to grasp. I don’t know how you live when your beloved is gone, but you must and you can and that somehow seems wrong and yet your life continues. I look into Allistaire’s cheery blue eyes and I wonder what next winter holds.
It is this ever rapidly shifting reality overlapped with the seeming normalcy of home that leaves me disoriented, wondering how I am to purpose my time and understand my place in the world. Two children, with which we have walked this road at length, are simply gone. At a Christmas party the other night, I was asked what I do, and I answered, “not much as of late.” The outlines of my life have blurred and bent. Those defining parameters look like poorly erased lines of pencil. On first glance, all remains as it has been for years, not much has changed, and yet I feel dislodged, adrift, simultaneously elated at the freedom and uneasy with such wide-open expanses. But it is the inner boundaries that have burst from such unceasing pressure. On the outside I am constrained from trajectories of action I might like to take. Here I would like to strike out and learn to cross-country ski and there, I would like to start my own business making jewelry. My waist, two sizes bigger than two years ago, demands I attend to its straining discomfort. Friendships and book clubs languish as I remain caught in a cycle of battling cancer from which I cannot emerge.
But within, I am beginning to slightly taste transcendence. Circumstances buffet and I stand less swayed. I am learning to actually hand it over to God. Here Lord, here is my heavy heart over this conversation with my mom. Here Lord, here is this scary lab result from Allistaire’s blood tests. Here Lord, here is this confusing situation I don’t know how to navigate. Here Lord, here is my wicked, angry heart that bellows in fury and sorrow. Here Lord, here is my relationship with Solveig that has suffered over these past many months. Here Lord, here is my day, unknown to me and held by you. My goal and task oriented self has so been knocked off course that there is no longer a course to follow and I find myself coming back to and contemplating these words of Jesus from the book of Matthew 9, “But go and learn what this means: ‘I desire mercy, not sacrifice.’ For I have not come to call the righteous, but sinners.” And these words from Micah 6, “With what shall I come before the Lord and bow down before the exalted God? Shall I come before him with burnt offerings, with calves a year old? Will the Lord be pleased with thousands of rams, with ten thousand rivers of olive oil? Shall I offer my firstborn for my transgression, the fruit of my body for the sin of my soul? He as shown you, O mortal, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God.”
I have never had one long-term job that I could latch onto in order to define myself. No, in my working years I have been a cashier at Crazy Eric’s Burger Bar located at the local fair grounds, a Resident Advisor and a Resident Director, a food service worker, a camp counselor, an AV tech, a 911-Dispatcher, a math and science teacher, a case manager with homeless women and children, a guardian to individuals with disabilities, a bookkeeper, and had one 5-day stint in a bottle factory. I’ve had no career, but I defined myself by my ability to work hard, learn fast and get along well with people. Being a mom has been, without question, my hardest job. And it turns out, I’m not so great at it, despite trying extremely hard. And with all that has happened with Allistaire, I had to basically abdicate my position with Solveig for a long time. Most recently, extreme struggles with getting Allistaire to eat has left me subconsciously flabbergasted that I cannot even fulfill my most basic task as a mom, to feed my child. I don’t earn any income and every day seems marred with failure, for no matter how many scores of minutes I demonstrated patience and kindness, inevitably I break and yell and feel wretched within minutes but am still reeling with absolute incapacity to get my child to do what she so desperately needs to do to sustain her life, nor am I able to keep my mouth and emotions under control.
To put it bluntly, I have basically nothing to show for myself, or at least, far, far less than I would like. It seems all my advances and efforts are thwarted and I am forced to ask myself and the Lord, what is left? What is left of me God? I am a heap of weak mortality. And in this wretched, broken state, the sweet voice of the Lord speaks tenderly and He is showing me that He is the One who defines me. He is the One who defines my worth. He is the One who simply wants me to walk humbly with Him. That’s it. There is nothing more. Those aspirations I have clutched so dearly, have been forced from my hand. Those voices that yammer for me to be this and that and have this experience and that possession, and this expertise and knowledge – the world is growing strangely dim. How long has He been saying the same thing over and over? But how deaf my ears and how weak my eyesight, how sluggish my heart. Thank you Father for your persistence, for your patience, for your very long-suffering with me. Thank you that you have me in your grasp. He is sowing contentment, rest, submission, in my soul. My standards of perfection and achievement are smudged and growing slightly more faint. I am finding the turbulence of this life having less power over my more rooted self. The simple beauty of walking with the Lord is rising up. But I can look up at those calls to act justly and love mercy and I look back at my wretched heart still so full of earthly plans and desires and standards and the enormity of justice and mercy makes my sway and dizzy. But there, His voice again, walk with me, just walk with me. I have your heart, I am the potter, He that forms you into my likeness. Yield under my hands. He is helping me bit by bit to yield, to rage less, to delight more. Little by little, with such minute increments, I am more tender with my children.
At the Christmas party, I am quite bland in contrast to the world-traveling Irishman or the Frenchman turned American who has re-invented himself as a writer. In this town, I fear I have not much to show for myself. I am quite unaccomplished and there is the part of me that is greatly dissatisfied by this predicament. And the thing is, I am not even very good at walking with God. Incessantly I stray, drag my feet, have far less understanding and knowledge than I feel I should have and the severity of my lack, the fruits of the Spirit not so abundant, threatens to steal away my hope. Within and without Christendom, I have little to stake claim to. I have only this, unending grace and forgiveness that far outmatches my failings and weaknesses – the face of my Lord entreating me to yearn only to stay at His side.
These weeks at home have been great delight for Solveig and Allistaire, punctuated by sibling squabbles – Solveig the Silent and Allistaire the Aggressor. A fabulous winter storm dumped snow, covering all land and trees, and the then the temperature plummeted, down to minus twenty-four at a few points. Something about the severity of the cold invigorates the collective camaraderie of the town and while the Christmas Stroll may have been less populated, it was nevertheless cheery as we ducked in and out of stores and galleries for reprieve and the hand warmers in our mittens, never so cherished. Allistaire herself has been doing really quite well, with the one exception of her eating which has turned into a grand battle of wills, stretching the consumption of one egg and a cup of milk into a two-hour event.
At Tuesday morning’s clinic appointment I expressed my weariness over the effort required to get her to eat. This seeming lack of appetite, a point-two kilogram drop in weight from the week prior, redness of her cheeks and a bump up in one of her liver function tests, prompted Dr. Pollard to consult with the GVHD SCCA docs. In the two days before I heard from her, Sten and I did some serious strategizing and determined that hence forth, we would offer Allistaire only foods we knew she most willingly consumed, things like hotdogs, mac n’ cheese, cheese pizza, eggs, cheese, pasta and tons of whole milk. Somewhere deep in the recesses of my mind, I want Allistaire to live like a normal three and a half-year old, which to us includes eating what the rest of us have to eat for dinner. In the same way I had to come to the realization that being at Ron Don did not mean that she needed less Zofran (anti-nausea) than in the hospital on chemo, so I have to remember that just because we live at home, does not mean she is normal. She has had chemo dumped steadily into her body for nearly ten months. She may be in remission, but that does not erase what has transpired or what she feels like right now as she continues the fight. And she’s three and a half and such a fighter, just stubborn as all get out – amazing in her ferocity at times. Sten and I are intent on deflating the intensity and emotion of our need to get her to eat and her resistance. For breakfast, Sten has begun making smoothies with Ensure and she and I read stories while she takes sips. At lunch she gets to watch little videos. The time to consume her food has reduced quite a bit and the battle is much more minor. We are also trying to get her up and eating a bit earlier in the morning so that there can be greater chunks of time between meals which will hopefully thus increase her sense of hunger. It’s hard though, between meals she is drinking her water bottle (12oz) full of whole milk.
What is the source of this struggle to eat? We wade through the many possibilities – chemo, maybe even accumulated effects of chemo, three-year old fights of will, GVHD, some combination? The biggest concern of course is that it could be GVHD. As of last week, she is completely tapered off Beclomethasone, a steroid to treat GVHD in her gut, which she has been on since July. The hope is that she would do well coming off this localized steroid and an additional tapering of her systemic steroid, Prednisone, would be approved to start sometime after her upcoming clinic appointment with Dr. Pollard at Children’s on the 23rd. The significance of this taper looms large for me as I recall the words of the SCCA doctor who described the optimal scenario for Allistaire, to be completely tapered off all steroids in conjunction with the end of her chemo treatment, in order to maximize her immune system’s ability to fight her cancer. Many kids are on immune suppressants for a year or more post transplant, but most of the time they don’t have disease present post transplant. The need for Graft Versus Leukemia, is clearly of utmost importance to Allistaire’s ability to survive. On Thursday I listened to a message from Dr. Pollard saying the SCCA doctors wanted to see Allistaire the following Thursday, 12/19 – they were on vacation after that. Well, I was certainly not at all excited about cutting our own time/vacation at home five days short and nor was I convinced there was clear evidence of GVHD (please note I am no doctor and have no expertise). Allistaire has not been throwing up, having diarrhea, or expressing pain and things had improved with her eating with our new tactics. Fortunately, Dr. Pollard was fine with holding off and we are still planning to see her and start chemo on the 23rd, unless things change. Allistaire has clinic and labs again this coming Tuesday, so we will see what her weight is then and check all her numbers again. She is stilling struggling with a bit of a cold, which in itself can cause one of your liver numbers to bump up. Fortunately her other labs look good – hematocrit of 45, platelets 211 and ANC and unimpressive 612.
These days we really don’t plan more than a few weeks in advance, even knowing that can change in a flash, but we are hoping our Christmas plans work out. Allistaire is scheduled to get chemo every morning December 23rd through the 29th. Because she is scheduled in the mornings and the infusion is only 15 minutes long, we really have big chunks of each day. Sten and Solveig will be flying in on the afternoon of Christmas Eve and we are planning to head up to my brother and sister-in-law’s house in Everett for the remainder of Christmas after chemo. Once she has finished her week of chemo, we are looking forward to a couple of days at my parent’s house, followed by a day with dear friends in Portland before we head home and hopefully arrive safe and sound on January 3rd. After that I don’t know. At this point, we would expect her to get her last round of chemo at the end of January. I am guessing Dr. Pollard will want a bone marrow test this time around and likely another one at the end of that 6th chemo cycle which would be at the end of February. Who knows, that is so very far away in our world.
Today, I am praising God that He has sustained Allistaire’s life these 6 months since transplant and that her disease is under control, at least for now. We are about to pass this significant date which marks the possibility of another transplant, should she end up needing one. The thought of another is quite overwhelming, but we walk on, sometimes trudging. You’re not supposed to look at another who has less than you to make you thankful. The girl who is chubbier or the family that is poorer is not supposed to be the marker by which you give thanks, but there is this reality that while our lives are not what we wish, we know we have such unbelievable abundance to be thankful for, and it really, truly could be so different. Allistaire is alive, and doing well and we are together as a family. And I, I am coming to be more acquainted with turning my face to the Lord.
This is Advent season, a time of waiting – a time to remember back to the days that people awaited the first coming of the Christ and celebrating the birth of Jesus, Emmanuel, God with us. And this is a time of waiting for His return. It is a time of darkness as we draw near to that shortest day of the year on Winter’s Solstice. It is a time of groaning and tears as we face our finiteness and our mortality and mourn the loss of our beloveds. We wait. We wait, in eagerness, like watchmen wait for the morning. We wait for our Lord to come back and make all things right and to wipe away every tear and fill utterly and completely, spilling over, the light of life in our hearts and all of creation. We are waiting for you precious Lord.
Hearts with you guys always. Saw you from a distance at the Stroll but think we were too frozen to move fast enough to catch a running Allistaire. What a Sight! Merry Christmas to you all!
Just love the winter wonder land of photos/
I think of you often and pray for your little foursome. This week while reading I came across this and thought of you http://www.patheos.com/blogs/nadiabolzweber/2013/12/and-a-soul-felt-its-worth-a-sermon-on-an-overlooked-miracle/
Our stories are so similar, yet so different!
My Anthony was diagnosed with ALL at 15 months. He underwent 14 months of intensive treatment where we had to stay in Seattle, then 2 more years of treatment at home with monthly trips to Seattle. He is now almost 9 months out of treatment and is doing GREAT!!
But, I want you to know that our situations are/were so similar. I gained a LOT of weight while going through the Seattle phase (vending machine diet, awful cafeteria food, plus yummy volunteer dinners at RMH). I am far from a healthy being right now, but so much better now that we’ve been home for almost 3 years. Mentally (and emotionally), I am only just starting to be able to not associate everything we come in contact with, with cancer. We are finding a new normal. But, it has taken this long to get there.
Anthony had steroids as part of his chemo regimen for the entire 3 1/2 years of treatment. He craved salty food a lot, and meats. He hasn’t had steroids since April, but still is very picky with foods. He goes through a 5 pound brick of cheddar cheese each week, and about a Costco-size package of string cheese each week or two. He does not have a really great rounded diet, but I try to hide those veggies and fruit in ways he can’t see (visual eater).
Anyway, you’re not alone. I love seeing the pictures of your wintery wonderland at home, and hope your family has a wonderful Christmas!
I read a statement the other day that was so profound to me at this season of my life: the distance between our expectations and our reality is a fertile field. Expectations. Of being a mom, a wife, expectations of my husband, my walk with The Lord the list engulfs me. It’s almost comical to me to read your struggles, considering all you are enduring, you are to me the perfect model of a woman walking humbly with God. That includes all the inadequacy you are so honest to share…because we ALL have them. Like when I felt a wee bit guilty that I have always fed Markelle Mac n cheese and hot dogs and all that other junk…because she is a picky eater too, so I gave in to make it easier and I’m not even fighting for her life. I see your beautiful house, the fun dress up days, the creative play, the time outside, your beautiful photography and I think to myself, I’ll never measure up to my own expectations. It’s all a matter of perspective and I suppose we all battle the same feelings. But you, you are in a place before The Lord where you are daily conscious of your need to turn your face to Him. And because of reading this…weeping for sweet Marleigh, again I have checked my perspective and again vowed to do better, be better. What we sow into that fertile field will detrmine what we reap. (Galatians 6:8) i am trying to not sow carnal attitudes of discontent, anger, pity, covetousness….instead I will try to allow The Lord to contiue His handiwork of shaping me into His image, trying to keep my eyes on heavenly perspectives.
I have a strong feeling writing a book is somewhere in your future, so maybe The Lord never set you on a specific career path so you will be ready! Thanks for sharing! Praying…
Thank you for your words and sharing your experience.
I met your mother-in-law and Solveig in a ride from the hospital in Seattle to the airport. We were there to see a specialist for my son, Blake, who has Dravet syndrome. Solveig had Blake laughing harder than I’ve ever seen! They had so much fun in the van! And I was blessed that your mother-in-law thought to tell me of your blog!
Maybe you’d like to check mine out? I’m new to this blog business!
Hey there friends! I just read this last post after having sent a FB message hoping we could meet up. We are in Helena for Christmas, but will be returning to our “new” home in Olympia WA. Would love to connect in Washington if you have the opportunity. Our phone numbers are dated so check your FB and I will have posted our numbers. Hopefully we can see each other! Know we pray for all of you — ALL THE TIME! And, Jai, that though you don’t feel as though you are “accomplished” your words have inspired, and action have affected more people than you will EVER know. God has worked through you. Know too… that there is one gal out there that has considered mother-hood in a totally different light than she would have ever understood before if your words hadn’t been a part of her life. (Uh, that would be me.) We love you both! ~Jen (and Leo)