On Saturday Sten took off Solveig’s training wheels and in a matter of minutes she was off riding by herself. We had a great weekend with the girls getting to play outside with cousin Haaken as Sten and his dad, Lowell, dug holes to put in a fence around the newly expanded garden. The breeze blew through the aspens and I thought, wow, this is the life.
Andy, Stellablue’s dad, called yesterday afternoon. Solveig and I were with Grandpa Lowell at Cashman’s nursery getting plants for the new garden. He called because he thought I’d want to know that they had been called by Ruby’s mom to come for a visit. Ruby and Stellablue love one another and Ruby’s days are nearing the end. Her 18th birthday is tomorrow and she will likely not make it to her prom in June. My heart was heavy once again for Ruby and for her mom and dad. This weekend as I hiked, I looked out at the vast expanse of space around me, the many far off snowy, rugged mountains, the fresh green rolling foot hills and the moving sky and I asked God over and over again to meet Ruby there in that small darkened room. I asked over and over again that the splendor of his magnificence, that I was witnessing in that moment with my eyes, would somehow enter into that tiny space and that Ruby would have eyes to see it, that God would give her ears to hear His voice. This morning I started trying to write her a letter. I’m trying to convey the hope that God has given me through the many years of my life and the unique past months and tell her how that hope can be her’s as well. Please pray for beloved Ruby and her mom and dad. Please pray that the Spirit of God would give me His words to write.
Here is a short YouTube video of some of Ruby’s photography, her voice and a glimpse of her face.
On Tuesday, May 15th, exactly 5 months from her first day of chemo and 5 1/2 months since we first heard Allistaire and Leukemia in the same sentence, the morning of the “line pull,”Allistaire sports her tubies for the very last time.
48 Hours later we were in Bozeman and Allistaire was ready for her first bath without impediment, without para film, without press and seal, and without caution. She seemed to notice none of this, not even that her tubies were gone. But she was never-the-less excited as she repeatedly declared, “I find a booby! I find a booby!”
Dr. Pollard called at 2:53pm yesterday to say that Allistaire’s bone marrow is clear. There is no cancer to be seen.
The joy and relief burst in and is seeping in. I’m sure it will feel more real once those tubes are gone. Thank you for all of your prayers and love and encouragement.
We went to my brother and sister-in-laws today for the first time since last summer. Tomorrow we’re going up to Port Townsend. It is so amazing to be able to get away. Monday Allistaire has her final labs drawn from her tubies and a discharge examine with Dr. Pollard. Tuesday at 7:15 in the morning we are to arrive at the hospital for her “line pull,” scheduled for 8:30am. Then we have to wait 48 hours just to make sure she is healing up well. Then…we’re getting in the car and heading to Montana. We plan to stay about 2 weeks and then I’ll bring Solveig back with us. I think we’re going to do lots of little road trips and see many of the faces we have so missed in the six months and longer.
I’m going to bed. The inspection for the house is scheduled for 1:30pm tomorrow. I’m just trying to wrap up details and get on the road. I’ve already been fantasizing about driving I-90. I cannot, cannot believe we are at this point in the journey. I told Dr. Pollard that is has felt like trying to drive out of some war-torn country and anticipating check point after check point, holding your breath and hoping that you get through.
Thank you Father for your generous provision. Thank you for simple, plain, ordinary, glorious life!
Mom and Dad watched Allistaire yesterday so I could have a break and get out of the house. In the afternoon I ended up at one of my favorite antique malls. As I meandered down one of the corridors, I saw Sally coming toward me. My mind slowed and chugged, laboring to comprehend seeing her in this ordinary place, just like it had when I saw Olivier, the massage therapist from the hospital, in Ikea earlier in the day. So here we were, she and I, doing something we both love; she looking for small original paintings in gold frames to add to her collection and I, well, I hadn’t formed a goal, just enjoying observing and hunting for something whose name I never did discover. I was struck by how lovely it was to see a familiar face, a knowing face, out here, in normal life. But as the day wore on, another reality began to sift down through all the little open spaces in my heart, and settle heavy. Right there alongside the description of the paintings she was looking for, was the news that she had seen the father of one of the patients with whose mom we are both friends. “I dared not ask him what was happening,” she said, “with that look on his face and the emergency room badge. She is not supposed to be here.” When at last the day was coming to an end and I took a moment on the computer, intending to see how many hits the “Stronger,” video had gotten up to, I looked at my email. There in reply to my email from days ago were the words explaining the strained face, “her cancer has returned, she will not survive it.” She is hoping her child can make it until June for a much looked forward to event.
This morning as I sat on the bed in the procedure room, Allistaire in my lap, I listened to Dr. Pollard as she explained that Allistaire did not need a biopsy, only an aspirate, because she is doing so well. I could barely hold back the welling tears as I asked my questions. As I waited in the adjacent room, I felt confusion and guilt that I should not be so very happy to be sitting in that room for the last time. You see I feel very weighty, so worn. I am not sure how to live out there in the world again. My eyes and my heart have taken in such realities I can barely hold. They are so weighty and cumbersome. There is part of me that just wants to shove them far back into the dark corner and close the door. But they are too heavy for even that. I visited them today and peered into a darkened room, seeing her there laying in the bed, I wondered what it is like to know with certainty and tactily that these are your last days. I see the picture of her taped to the whiteboard in her room. She is beautiful and young, hair draped over her shoulder. My only offering to her is a cheesecake I plan to bake Friday night. She and her mom, sweet to Allistaire and glad she is doing so well. My heart is wrenching, pulling in opposing directions. I have now known the end of sweet young, bursting lives and parents left bereft and forlorn. Allistaire is doing well, but I will never again know the light-hearted freedom of possible harms, “out there.” Harm has come in close; it has lived in our midst. Like the reverse of a woman waiting each month to see if this time she is pregnant, I imagine as the days grow close to the next monthly blood test, life will slow and be lived out of deliberateness and habit as we wait yet again and again to see what the blood has to tell us. I have been witness to loss and brokenness and sorrow, so sharply deep and invasive. Like all witnesses, I am now bound to what I have seen. I cannot escape it nor leave it behind; it has become part of me. But these scars are not the scars of an entire community at war, that are not held collectively. These scars are not readily identifiable. As I took my bald-headed child to Target and Costco the other day, I had an intense compulsion to want the opportunity to speak what has happened out loud. I wanted to declare that no, she is not like your grandchild who took forever to grow hair, she is my beloved who is just now emerging from the throes of cancer. It is hard to know how to carry pain in a world that offers little room for such groanings. There is part of me that yearns for the accumulation of days which will dull the biting sting, just as it has for the end of a little 10-week growing life, now 3 1/2 years ago.
There is no longer “normal life.” Or perhaps there is but it has been changed so that normal has new contours and shades and landmarks. I asked my friend about this notion of “fighting cancer,” that this “Stronger,” video has brought into the spotlight. It has never, in this whole time occurred to me to, “fight.” I pulled up to a four-way stop yesterday and it was unclear whose turn it was to go and so I yielded. I yielded and I turned the thought over on my tongue and I thought how sweet and foreign it is to yield. I dwell in a land where to exert one’s power is a fundamental value. To take a stand for one’s rights is the constant battle cry. I yielded and it was sweetness in my mouth and foreign beauty in my mind. This is the way of the Lord; to yield and to submit. There is nothing more repugnant or vile than this to the American mind in the 21st Century. I had to stop myself and question, am I weak? Why have I not sought to fight? In the beginning of all this I started reading a blog of a mom whose daughter also had AML here at children’s. Eventually I read no more because I couldn’t identify with her constant request for “sending good thoughts,” and the repetitious cry that they were going to “kick this cancer’s #*@%.” How many times have I looked straight into the eyes of another mom, and painfully, but willfully said, “I don’t know if they’re going to make it.” I don’t know if your child is going to win “the fight,” or if mine will. This resolution has not been promised to us. There is nothing to guarantee safe passage. I don’t know how many times I have heard it said with resolute hope, that “God doesn’t give us more than we can handle.” This is in actuality the opposite of what the Bible proclaims. In truth it says over and over that we cannot handle what life has for us; we are in grave need of a God who can carry the weighty load for us.
I paid $12 for two sea urchins at the antique store yesterday. They were $6 each. I suppose they would fit more into the category of, “curiosities,” rather than antiques. They sat in a great glass cabinet with scores of other treasures from the sea. My fight is not against cancer, it is a battle to submit my heart over and over to the One True God and accept what comes from His hands. The doctors and pathologists examine Allistaire and bits of her flesh and determine what medicine she needs. They strategize the best method of getting the agents of war into her at just the right moments and with the most effective means. And Allistaire is so young; she only knows to scowl and resist yet one more squeezing of her leg to determine her blood pressure. The war of what it all means is left largely with me; a bulkiness that I attempt to carry and am unable to get away from. Even before I could feel the urchins in my hand, through the glass cabinet door my eyes took in the lovely green color of moss and the intricate, flashy design of purples and orange, like some vintage ’80s sweater. Once in my hand, the tips of my fingers detected the spires in precise array. I held the smaller of the two up to the window. Tiny streams of light passed through perfectly placed holes; symmetry like flower petals. As I walked through University Village yesterday, I stopped abruptly at the sight of the most delicate, feathery leaves of a Japanese Maple; their bright paper-thin green layering shade upon shade of green as they overlapped one another and the sun shone down over them. Here are the tools of my fight. Here are the weapons of my war. These innocent wonders silently, blaring their declaration that there is a God. That life is not random. That there is beauty and intention and outlandish, absurd luxury. In some random hallway, we walked today to fill the time until Allistaire’s bone marrow test. There on the wall was one of my most favorite things in the world. A poster, entitled, “Biochemical pathways.” I’ve only seen it two other times. I don’t claim to understand a thing about it, but it is simply it’s daunting complexity and detail that thrills me to the core. I am reminded of the poster on the wall of my classroom, the one year I taught junior high and high school science. It is a poster showing the electromagnetic spectrum with the wide stretched-out radio waves on the far left. In the middle are the waves we can see with our eyes, showing up in violets and yellow, green, red and blue. The waves constrict and tighten, becoming ultraviolet and eventually gamma rays. My mind is off, soaring over one delight and wonder after another – the octet rule in chemistry where every atom is ever on the hunt to rid itself or obtain electrons that it might be at rest with eight, the fact that there would be no life on the planet if it we not for the fact that the water molecule is bent rather than linear, making it polar. I recall the sight of the flashing bright, yellow just below the waves in Hawaii and know that I have seen those fish up close. I consider the looming, bulk of Mt. Rainier and it’s silhouette so known and loved from my childhood. How many stories can I tell you of the adorable things Allistaire has said or the thousands of times I have taken delight in the expression on her face or the intonation of her voice. Sometimes I just stop and look at her legs, at their sumptuous curves and the mystery that they continue to grow as bone cell adds to bone cell and skin cell and muscle accommodate the new dimensions. I wonder, how is it really, that such a thing began inside me? How did two mere cells create this being made not only of wondrous flesh but delight and joy and humor and angst and fire?
In December we were thrust into a world, I had previously only barely known in the faintest of outline. Now that world up on the hill, behind those walls of cement and steel and glass, is known to me in intimate color and detail. I know its sounds. I hear them even when they are not present. I know the smells and the faces and they come to me in my dreams and as I drive and as I shower and as I walk and as I drink my coffee and get the mail. With the most minimal of effort, you can pull back the cloth and see the ragged fresh scars. I will always bear them. They are unlovely and eventually they will fade and contort with age, but they are sacred and cherished because they are tangible reminders of what has been. I recall that as I child I thought adults were way too serious and uptight, that life was nothing but delight upon delight and adventure after adventure to be had. I am continuously surprised to find myself so sober-minded. And I know that I must fight lest I be lulled into despair. I am coming to believe that the secret to the fight, at least in part, is to see that these weighty, harsh realities do not take up all the space in the world, in this life. They sit side by side with the lovely, the beautiful, the delightful, the mysterious, the complex, the exultant. In my pain and searing ache I demand an account for these horrors. I cry out and rage and ask why?! But I must also seek an account for these wonders, the ravishing beauty and delight. But this is not math. You cannot take one away and receive one and have it come out equal. The loss is real and the wonderful does not undo the wretched. But it is in peering into the pattern of the sea urchin shell and allowing myself to hear its declaration that God is and He is the creator of beauty and life and power and complexity that gives me hope and enables me to submit to the one who is able to destroy the cancer. How can I submit to the very one who has the power to destroy the cancer but may not? Again, and again and again I am also called to give account for all the things which speak to God’s goodness and His love and His provision and His delight in caring for us. I hold the wretched in one palm and the wondrous in the other. I am unable to reconcile the two, but that does not mean that they are irreconcilable. It may just point to my finiteness. Will I only allow the sight of pain and brokenness and so much ugliness in the world to consume my view. Will I only shake my fist at God and wring my hands over these and disregard the very thing that is so treasured by me; the very thing that in the fear of its loss shows me how great it’s glory and value? I hold the sea urchin in my hand and I force myself to ask the question, how and why? I look out into my yard at the plants that push their way up through the soil year after year and I require myself to ask, how and why? I let the beauty of the sun pink on the western snowy monolith of Mt. Rainier wash over me and I cry out how and why? I get down low and look into the eyes of my child where I see mischievousness and glee and blue and I demand to know how Oh Lord did you create her and why Oh God did you give me such a gift? I look out wide over my life, this way and that, and take stock of the abundance and I ask, who am I to be given such bounty? What have I ever done to deserve such treasure? I do not stop calling out to God with an ache too deep to bring tears of one more life nearing its end. I do not stop pacing before Him and pleading and demanding that this pain and brokenness must end. And I stand silent in the dark, dark night, my head craned back until my neck hurts, straining to take in the depth of the Milky Way and I am overwhelmed with a God who can and who would make such a thing. And my mouth gapes as I consider a God who would come down from such heights to look me in the eye and hold me by my hand and declare in so many infinite ways that He loves me. My whole being strains to take in the weight of such a truth. I yield because I have seen too much beauty to walk away.
Wow, I have hesitated over and over to post anything because I can’t think of anything better than to just watch the “Stronger” video over and over. So…stronger. Yes, stronger indeed. The last several days, Allistaire has spent hours riding her bike. Hours. All she wants to do is ride her bike. In the morning she pops up out of her crib and asks/declares, “Ride bike?!!” At night when I put her to bed, it is the same thing. When I tell her that there’s something we have to do, she says emphatically, “ride bike later.” It has been so lovely to be outside walking and her intent on the joy of riding.
At her clinic appointment on Monday she had gained .3 kg since last Thursday. Her ANC was up from 178 to 552; platelets were up from 122 to 212 and her hematocrit is now holding steady. She is doing great and I am so hopeful that the results from Thursdays test will be great. I asked Dr. Pollard if she thought we could get results back by the end of the day on Friday and she said yes, this should be possible. It is nearly incomprehensible to me that we could be coming down to the last week of this. Of course it won’t really be over, but her treatment will be and that is monumental!
So, here is a little look of Allistaire nudy sporting her tubies. We look forward to those suckers being gone for good!
Isn’t it great that everyone has their own gifts and strengths? Chris, man is he amazing. Allistaire loved to flirt with him. I’m not kidding, she would give him coy little eyes and try and get him to chase her. (Did I mention he’s 22?) She loves him and I love him. He has brought so much joy to the Unit and to our little AML gang. Tonight I bring you, with ecstatic joy, a gift from Chris. A music video. I love everything about it – but most of all I love that it contains the faces of so many people I love: Jenna with her dad Drew, Chris, Jenn, Alexa, Darren, Heidi, Bill, Sam with his missing tooth and playing with his legos, Lysen – one of our most beloved nurses looking good in green, Abi – strong beloved Abi in bed at the beginning, her mom Diane, Stellablue riding around on her lilly pad being pushed by dad, Andy holding little Soren, Urmilla and a few residents and more whose names I don’t know.
Thank you Chris for showing another side of our life there at SCCA – a life that is full of joy and vigor and fight and camaraderie!
On Monday Allistaire was supposed to have her TPN reduced to 16 hours. When the team rounded, Kathy, the dietician, joyously suggested we just be done. Because her ANC was 222, this meant she was also able to go off of her antibiotics. Suddenly there was no longer the need to have her hooked up to her IV. The only thing standing in our way from leaving was the need for Allistaire to show that she could consume the needed volume of her daily fluids. Forty ounces was the goal and we were graciously allowed to count 50% of the baby foods volume toward fluids since it is so runny. We only had to get 80% of the 40 ounce goal in to make it out the next day. So the closer goal was actually 32 ounces. By the time I laid Allistaire down for her nap she had already consumed 34 ounces. Elation! She was also eating incredibly well, downing jars of baby food and even feeding herself again. When I stretched out my hand to give Allistaire a chunk of cheese, she responded with, “Okay mommy. Running fast, eat a cheese.” She used her little teeth and chewed like it was the most natural use for teeth.
On Tuesday afternoon, as we were attempting to make our exit from the Unit, we were thwarted over and over from our departure by so many beloved faces. It was joy and sorrow mixed together. The pervading statement was, “I hope to never see you again.” Where else in life could such a statement be one that declares love? But here, every hello is cautious and every farewell tempered. When a face you love shows up after being gone a while, you rejoice and you simultaneously fear what it could mean. A sigh of relief meets the statement that it is a scheduled return. We say good bye hoping it is forever but never knowing, even as we look into the faces of those for whom it was not the end. I just wanted to get out and be on our way and at the same time, there is sense of betrayal that you should be allowed to simply walk out of those double doors, and they must stay, facing long hard roads with unknown ends.
But leave we did and what pleasure it was to see sweet Allistaire walking in her dress, all lit up by the bright afternoon sun, as she marveled over and over at flowers and birds and just the fact that she was walking. Joy to put Allistaire in her car seat and simply drive away. Two weeks from that day and we could be done. Thursday we had labs and a clinic visit. While Allistaire is doing great, unfortunately her ANC was only 178 and so we had to cancel the Bone Marrow test scheduled for that day. It is now rescheduled for next Thursday, May 10th at 10am. Results should be available in plenty of time to review before her scheduled “line pull” on Tuesday, May 15th. Our only other appointment is this Monday the 7th just to check labs and have one more exam. Once her line is out, she will need monthly blood tests from the date of the line pull. Every three months they want to see her here at Children’s. I so just wanted that test done and good results back, but now we wait another week. I am just thankful that this delay should not impact the timing for the line pull.
We are home now and trying to figure out how to live this new life; this life still in limbo. We received an offer on our house on Wednesday which we accepted. Tons of paperwork has been filled out and signed. Now we wait for inspection and the much hoped for approval of our short sale which could take months. Today I rushed around the house like a mad woman trying to pick things up and vacuum due to a phone call informing me an agent was coming by in 45 minutes to show the house. Please pray that the short sale would be approved in record time and that God would help me to be a good steward of our home without being a stress case. It is hard to know how to spend our time since we are still trapped at home with Allistaire having such low white blood cells. What has been the best is to simply watch Allistaire do the things she does. She has little plans she carries out – taking all of the blocks out of the box and sitting them on the table, then returning them one by one. She walks up the stairs now, one hand on the wall as she ascends, instead of crawling up. She tells me all sorts of things with her sweet voice and expressive eyes. She has taken to the word, “later.” Anything she is not excited about, she suggests we do later. There is a great deal to rejoice in despite the ever present feeling that life just feels strange. I still feel unsettled with having so very much outside of my control, but I seek to soak in what the moment and day hold. It is a constant effort to fix my thoughts on what I do have instead of what is different from the way I want it, because I know at the gut level that I have it good.
I bring another immense prayer request before you. I met Jason and Rhonda Holtrop in the family lounge at the hospital just over two weeks ago. It was a Wednesday morning. I remember that it was Wednesday because it was Mighty O Doughnut day, a day I looked forward to with eagerness and anticipation each week. On that particular morning, as I awaited the 9am hour when the doughnuts would arrive, I gazed at a man and woman praying together and reading their Bible together. I felt compelled to thank them for the encouragement it was to me to see them there, together, seeking the Lord through His Word. That began a number of wonderful, invigorating conversations over the following weeks about our mutual hope in the Lord in the face of the brokenness and illness of our children and the possibility of death.
Rhonda gave birth to little Esther who had CDH which is in brief a hole in her diaphragm which allowed her organs to shift upward and also caused the severe underdevelopment of her lungs. You can read more details on their blog. I read today that little Esther died sometime this early morning. Friends, these are the stories that are real that surrounded me at the hospital and that even though I am no longer present there, these realities persist. These are the stories behind the beautifully written names in the Memorial book in the chapel. These are the moms and dads, the husbands and wives, the grandparents, who go home empty handed. Please pray for Jason and Rhonda and their family as they look to the Lord to uphold them. Please pray for the many whose names we don’t know, who are in a battle against sickness and death. Pray too for the battle that is not seen, the battle of hearts, of spirits. Pray that God’s voice would be heard in the midst of such deafening trial and sorrow.
This is a picture of Jason and Rhonda; Jason looking rather silly because I caught him just after he ran his hand through his hair and I requested the photo shoot prior to him patting it down. They are joyous people, determined to seek the Lord with their whole hearts, and like Abraham, have entrusted their child to Him.
Friends, I implore you to pray on behalf of Rachel and Justin. I met Justin and his dad upstairs in the Family Lounge a little over a week ago. Justin and Rachel’s baby boy, Jack was only a few days old and in frightening state. He was born beautiful and healthy, over 9 pounds but in the course of labor there was damage done to his brain as a result of lack of oxygen. At birth his brain waves were flat, showing no activity. They cooled his body down on a cooling mat for 72 hours to give his body a chance to rest and recover, which he did in part as he began to have brain activity once he began to warm up. However, he had no gag reflex and everything pointed to severe brain damage at the core of his brain. I saw Justin a few more times and once met Rachel as well in the hall. Their mingled grief and hope overwhelmed me with sorrow. Yesterday, as I was coming in from taking a load out to the car, I ran into Justin. He said that they were bringing Jack home. My mind groped to understand what this could possibly mean. They had exhausted everything that could be done for him and they were bringing their beloved little man home to die. I felt my heart ripping with searing pain as I considered that we both were bringing our precious children home, mine to live and theirs to die. I do not deserve this much hoped for outcome with Allistaire and they do not deserve to never know the fullness of Jack. It just is and I don’t claim to understand the wisdom of God in this but I do thank Him that He seems to be holding up Rachel and Justin. Please pray for them as they are now at home, surrounded by so many tangible evidences of the life they had prepared so lovingly for. Pray that Jack would die peacefully. Father meet them in this dark time and hold them in close to you.
For more updates, you can visit their Caring Bridge site. Even though you do not know them, please consider leaving a message on their site to uplift them with all the care and prayers on their behalf.