Author Archives: Conglomeration of Joy

Nov4

Press On

Posted on November 4, 2014 by Conglomeration of Joy

This is my 200th post on this blog. The 200th time I’ve sat down before these black keys, trying to look back over the days and hours, to look into myself and ask what I feel, what have been the colors of this day, what was the angle of light and shadow. What were the moments that seemed to sum up the experience, this strange realm in which I dwell. I look up and out, expecting like a Montana sky to see far, to feel the refreshing of expanse, to relish in the way it dwarfs me. Somehow to feel so small seems to satisfy, perhaps because down deep I am so keenly aware of my smallness, my finiteness. But the sky, oh sky, whether by day with extravagant drape of blue or stormy steel of cloud underbellies, or that singing silence of stars – sky at dark – the sky gives my tiny self context. I am swept up within and so it is when I lift my eyes to The Lord.

Allistaire was still asleep in the recovery room after anesthesia for her PET/CT scan and so I slipped out to use the bathroom. Through the window of another room, I caught a glimpse of a woman, head turned far to the side and eyes closed with an expression of pain. Then came the cry, that distinctive cry of a newborn, clutched in her arms as the two nurses surrounded, attempting a blood draw or an IV. I remember holding Solveig when that first needle came and then another and another, to vaccinate her against diseases that cripple and kill if not protected against. My tears ran hot as I pressed her body against my chest, as she flexed in pain. Brokenness, we are born broken, vulnerable.

We were to meet Dr. Gardner along with Ashlei our social worker and a member of the PAC team (Pediatric Advanced Care Team) up on Forrest 7. Forrest 7 is the Cancer and Blood Disorder Unit for children under 13. The older kids are one floor up. As I walked down that long white corridor to the Unit, memory upon memory threatened to swamp me, like dark waves pressing up the sides of a little dingy. I looked out the window as we passed, the leaves turning, but the same scene regardless of the season. The smell hit me next and I dreaded walking through that door. When my eyes first opened this morning as weak light entered the room at Ron Don, I wished to somehow prevent the coming of this day, as though eyelids open would welcome in a torrent of sorrow. To walk through that door was to submit to what was coming, to acknowledge the reality of all this. For I have already walked this road, I know it intimately, all its contours and paths. Today felt like a sentencing, knowing we would sit across the table from Allistaire’s doctor and be handed the options set up against the realities of her disease. It must be the exaggerated difference of what I see with my eyes when I look at her and what all these tests declare, that makes swallowing what’s to come so very difficult. It is like putting one foot in front of the other, willing yourself to hand yourself over to be thrown in the lion’s den. You have been there before and only narrowly escaped, but with your flesh tattered and raw. The wounds have really only begun to heal and you are thrust back into that place.

I know the trees will soon lose all of their leaves and we have months ahead of us of dark grey and cold wet, this Washington winter. Immediately sun on snow and the crisp, invigorating freshness of winter in Montana rushes into my view and I grieve knowing this little girl who talked about skiing all summer will most assuredly not ski this season, if ever again. There are a thousand wounds of what will not be that slash and slash. I circle and circle these sorrows, perhaps because they are easier to bear than that center of deep black, that greatest loss. My world has constricted once again. So narrow is the focus, yet so looming. Again the mission of getting her into remission in order to do another transplant. While her bone marrow only shows 0.9% leukemia, the biopsy of her lymph node and bone both confirmed leukemic involvement outside of her marrow. They were unable to do Flow Cytometry on the bone marrow aspirate of her arm because the marrow was too fibrotic, but the old school method of using stains confirmed the presence of leukemia cells. The PET/CT scan also revealed a broiling terror no eye could have guessed. Outside of her marrow, the PET scan revealed leukemia in her right proximal humerus, right axillary lymph node, left distal femur, anterior compartment of bilateral thighs and in her left hand. There is also a lymph node in her left groin that may be leukemic, it is not clear.

It’s her little sweet left hand that hurts the worst. Somehow looking at that small hand, knowing what is eating away at it inside, oh, it feels like it’s stealing away my child, this girl who is so full of life. And when the sobs come it seems my cranium cannot contain the agony of losing her, the pressure unrelenting behind my eyes. And there are the words I know would come, must come. “We will give her chemotherapy and while there is a trial for transplant without remission she may be eligible for, we will have to discuss the worth of that.” All the doctors agree that if she “progresses,” if her leukemia becomes worse with chemo than it will progress with transplant. So we forge ahead with chemo, praying this time it works. Those three rounds of failed attempts last time she relapsed are seared into my mind. I fear nothing will be able to stop this thing. I fear watching the life vanish from her eyes.

We decided with the directing of the doctors to proceed with a chemo regimen called DMEC which is a wild combination of Decitabine, Mitoxantrone (also known as Blue Thunder), Etoposide and Cytarabine. She has actually had all of these chemos before but at different times and in different combinations. On Thursday or Friday she will have her third Hickman catheter installed and then she will be given 7 days of Decitabine, which can be done at the outpatient Hem/Onc clinic. She will be then admitted to the inpatient unit and be given infusions of the other three chemos. These are power house chemos which also are known to have the high potential to weaken the heart. Allistaire has had weakening and dilation of her heart before resulting from chemo and has been on Enalapril for about a year and half to help it recover. Thankfully, it is currently in really good condition, but this is the organ we most pray will be spared. A weak or damaged heart or other organs may close the door to transplant. This combination of chemos is currently under study but has shown such promising results that the doctors here are willing to try it on Allistaire despite it not being a standard protocol. Somehow the Decitabine changes the leukemia cells in a way that “primes” them to be more vulnerable to the destructive powers of the other chemos. Once she is admitted for the remaining three chemos, it will be a standard 28 day cycle where her blood counts drop, with her ANC (Absolute Neutrophil Count) falling to zero, and then waiting for them to recover. Once her ANC reaches 200 again, another Bone Marrow Aspirate and probably PET/CT will be conducted to determine the effectiveness of treatment.

Because Allistaire has extramedullary disease (leukemia outside of the marrow), it is necessary to give her systemic chemo prior to a transplant, even though the percentage within her marrow is currently so low. If the DMEC round fails, there are still a few other options. The trial in Denver for the DOT1L would still be an option, assuming her marrow is over 10%. They are also conducting a study with the drug Panobinastat her at Children’s that they could try. The other advantage of giving Allistaire chemo before transplant is that it takes a bit of time to find a matched bone marrow donor and arrange the actual donation. This is not a quick turn around like using cord blood would be. However, they will also be looking for a cord blood match and reserving that if it became needed. I don’t have a lot of details on the actual transplant options because we are simply not there yet, though it sounds like we will be meeting with the transplant docs at SCCA relatively soon to review what may be available to her. One of the greatest advantages Allistaire has is that in her clinical trial transplant last June 2013, she did not have TBI (Total Body Irradiation). This is radiation of the entire body and can only be given once in a lifetime given its very detrimental cognitive and growth side effects. Because she hasn’t had it before actually gives her more options. It is possible that if she were able to move forward with a transplant that she could participate in a trial using modified T-cells in a way that differs from the T-cell therapy that children with ALL (Acute Lymphoblastic Leukemia) receive. She is eligible based on her HLA typing but she is under the weight requirement of 30kg. She is only 17.3kg but they are willing to consider whether or not they can modify the trial for her. The weight requirement is due to the amount of blood they need to take for all of the tests. If you want to be inspired by the wonders of current cancer research, check out the Juno Therapeutics website that explains the TCR therapy that may benefit Allistaire. Be sure to check out the mad scientist, Dr. Phil Greenburg, who is leading this research and watch the video that shows the modified T-cells obliterating cancer cells. It’ll make you want to stand up and cheer and maybe weep for the beauty of creation and science, being the study of what our Lord made.

The chimerism test on Allistaire’s marrow, which looks at what percentage of her marrow is her donor (stem cells from transplant) and what percentage is herself (the cancer cells), showed that she is approximately 96% donor and 4% host/her own cancer cells. It’s hard to see this first glimpse of her donor cells losing their ground. But to you, most honored and cherished of women, to you, her donor out there across the globe somewhere in Europe, know this, though your cells may not prevail in my daughter’s flesh, it is because of your incredibly generosity in giving of your own flesh that my child has had life for the past sixteen months. And you have given all who know and love Allistaire precious time with her that would certainly not have been. You have allowed countless memories and joys to pile up. You have given my sweet girl, Solveig, memories of her sister that her younger mind might never have held on to. Thank you. We are forever and ever indebted to you and I pray God may bless you for your sacrificial giving. And if there are any of you out there who have yet to join the Bone Marrow Registry, I implore you to consider offering up yourself to be the source of life for another person desperate for a way through, hopeful for life. It is so easy to register. Just go to Be The Match.org and answer a few questions and they will send a little kit in the mail for you to swab your cheek and get a few cells that will give them preliminary information about your HLA type. While Be The Match is the primary registry in the United States, all of the registries around the world are linked, which means your cells could be a gift to someone on the far reaches of the globe, someone you cannot even imagine but is ever so real.

My life has dwindled down to this constricted place, this place of fight, this place where all energy is funneled into the battle to save a body, because it is the dwelling place of a spirit so dearly loved. As has been true before, there are dark walls looming, surrounding, overwhelming and threatening. The view on our lives as we knew it has been slammed shut. In only a few days Allistaire and I will go back into that physical prison of the hospital where she cannot even leave her room and I must leave the Unit altogether if I do leave her room. Every time I need to have food heated up, I will have to ask the nurse for help. Countless strangers will come and go in our small space. A message on the phone in our Ron Don room asks us to fill out paperwork for Adopt-A-Family if we are going to be here over Christmas. I know we will be and it is like so many pains that you cannot stop before they have torn into your heart, severing. The wounds come but I know I will not be destroyed. I recall to mind the treasures the Lord a long time ago buried in my heart. In the days of those first surrounding walls, I beat my fists in fury against them and cried out to God to help me find a way through or over or under them. I used all of my finite might to war against them. And then my sweet, patient God told me to turn around and fix my eyes on Him, on Christ, the author and perfecter of my faith. He helped me to have eyes to see that He is my dwelling place, He is my Sabbath rest, He is my very way, my very life. He enabled me to see that my boundary lines had indeed fallen in pleasant places and then with slightest of breath He caused those walls to simply tumble down. He blew and the waters of the Red Sea parted and He brought the insurmountable walls in my life crashing down. The Lord has been good to me.

So I choose to stand with those incredible three men of faith. I stand with Shadrach, Meshach and Abednego who knew the Lord could save them from the fire but stood with resolute declaration, that even if He did not, they would not bow down to any other God, because they knew that regardless of the outcome, their God was the one true God. I walk into the fire knowing God can preserve the life of my child, and even if He does not, He is my God and I will never stop worshipping Him. I love you Father. I love you and I am afraid. My heart threatens to fail within me. Hold me up. Take my life. I lay it down before you. I know I will see the goodness of the Lord in the land of the living.

Oct30

Fact Gathering

Posted on October 30, 2014 by Conglomeration of Joy

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Allistiare is entranced watching a Tinkerbell movie on her iPad as we await the time for her surgery. There are happy little woodland scenes painted on plywood – scenes of hills and trees with sweet birds, deer, little rabbits peeking out everywhere – a place to allow your mind to be transported to. Soon however, it will be time for her to go back to the OR and be sedated for the third time this week. Today the Interventional Radiologist will go in and biopsy her right humerus bone, the marrow and a lymph node in that arm pit. The MRI from yesterday revealed a slightly enlarged lymph node (about 1 1/2 cm) and the view of the bone was inconclusive. According to the radiologist, it looks like it could be a leukemic infiltrate where the bone marrow is pushing through the bone – they call it a lesion, or it could be osteomyelitis which is an infection in the bone.

The bone marrow aspirate taken from her arm will be tested by Flow Cytometry for a percentage of leukemia. If it were to be 10% or greater, this test would qualify her for the Denver trial. I am still unclear on what will happen if it is less than that. She is scheduled for a PET/CT scan next Tuesday morning to check for any other locations in her body that might show the leukemia. I suppose there could be more biopsies taken if something showed up with this scan but that hasn’t been discussed at this point. For now we will have to go through surgery and wait for bone marrow results which we would hopefully get by the end of Friday. One of my biggest questions at this point is what we will do if there are no biopsies yielding a percentage high enough to qualify her for the trial. A part of the confusion lies in the fact that the remission required for transplant is defined as having 5% or less disease. At this point, Allistaire has less than 5%. Of course, who knows how fast her leukemia is moving but for now she is known to have 0.9%. I asked for clarification from Dr. Gardner about my understanding that the necessity of being in remission prior to transplant is to remove “bulk” disease. She affirmed this to be true. Transplant is not good at clearing out large quantities of disease, thus the need for the low percentage identified in remission. So, this leads to the question of why we can’t just condition her now and take her to transplant. These are the strange terms of this world: “condition,” which sounds so gentle and nice is actually the brutal chemo and radiation that obliterates the present marrow. They “take” her to transplant where she is “rescued,” by the infusion of the donor bone marrow or stem cells. I do know that Dr. Gardner has reopened the search for a bone marrow donor – whether this ends of being cord blood or a match with an actual person’s marrow, I don’t know. It will all depend on the details of the transplant they can give her. But the process has begun.

For now then, we wake up each day with the shocking realization that this is all really happening. We must simply walk forward through each step and make the most of it along the way. Today Allistaire has surgery and we lie low for the rest of the day while she recovers. Tomorrow she will have an echocardiogram to check her heart. All of Allistaire’s organs have to be functioning well to endure what is ahead. Thankfully, as of last check in June, her heart was doing excellent. Next Tuesday is the PET/CT scan. I’m sure intermixed in there will be a number of phone calls with docs and perhaps new tests scheduled.

It is sort of mind-blowing to think of life one week ago. I could not have anticipated this wild turn of events and yet, this is exactly how it goes in the world of pediatric cancer. This is actually not one bit surprising. When people have asked me countless times if Allistaire is okay, is she doing well, I have never been able to come up with an answer that seems suitable, or at least that is satisfying to both myself and the one asking. Understandably, we all have wanted to and have rejoiced in seeing a little girl who seems to be thriving, who is bursting with life. But for me there is always an underlying edge of “I just don’t know.” I think the term “NED,” or “No Evidence of Disease,” is best. It sort of sums up the reality – the victory and also the humility of knowing cancer can seem gone forever, when it is merely dormant, lying in wait to raise its ugly head again. I think back over the past year. This day, exactly one year ago, Allistaire and I got in the car and drove home after being exiled to Seattle for eight months. As of September 20, 2013, she was considered in remission. Three or four bone marrow tests since then have shown 0% leukemia. But it’s still there. This cancer has never truly left in these three years. So sometime between her spectacular test results in June to that first evidence of arm pain at the beginning of September, somewhere in that small space of three months, her cancer was on the move, rising up.

Tomorrow is Halloween, a day both Solveig and Allistaire were greatly looking forward to. They were both going to be mermaids. I won’t be there to help Solveig dress up and admire her aquatic beauty. I won’t get the joy of seeing two happy tailed girls skipping down the sidewalk of Main St. in anticipation of more delights. When asked, Allistaire says she will be a mermaid princess named Ariel. There are some activities at Ron Don tomorrow afternoon that she can participate in, but oh, oh, how I remember Halloween a year ago. A year ago was a time of tentative hope. As our nurse said in those days, “perhaps this is a fragile remission.” And really, we’ve had more than we might have had, more than we were told we would likely have. In August of 2013 we were told she has a 5% chance or less and probably won’t make it more than 6 months, her only chance for survival is another transplant. And here we are, fourteen months later, hoping now for a second transplant. We’ve had all this wondrous time with her and all the while her body has been healing and growing stronger. In light of this, we have been given so much, so much more than we might have had. And yet, oh how I want more of her. I want a lifetime with her.

In the farthest corner of my mind is tucked, hidden away, this one most frightening thought. It is a thought, that with stupid superstition, I hate to say out loud. I try never to look at it. I want to pretend it has never been shown to me. But there in my periphery it remains. If Allistaire dies, I will be at long last, standing on the other side of that terrible divide. I will have been cast into a thick darkness unlike any I have yet known. But I know that in this darkness are the faces and hearts of others whose lives have forever crossed into the realm where death has become real. They know, in a way that I can only imagine, the finality of death. I have seen it from still so relatively far away, because it seems, until it cuts into the deepest core of your life, it is still intangible in it’s most severe of qualities. Becca dwells there. She awakes each morning with the gut wrenching reminder that Marleigh is gone, gone, never to return to this life. And Nancy, sweet Nancy, she will never again hear her husband’s voice. April has lost her baby girl Ruby and Kate her teenage Ruby. Janet grieves that Sarah will never dance again. Mario, Jaxon, Pantpreet, Zach, Christian – all gone, but their parents remain. I have seen the Lord and known His comfort in the darkness, in splintering sorrow, but no matter how bad it’s been, I still have my girl. God needs some of His people to walk all the way down that road and to cross over that chasm that in that place they may know His comfort, they may cling to His promises, they may declare that they have seen the goodness of the Lord – in that place, the place where you can never again hold your child’s hand or look into their eyes or hear their laughter. With all that is in me I want to flee from such a place. But I know in my core, that submission to God for me, means yielding to His will, no matter the path, even if it leads there. And I pray this, Father, if you at last bring me into that wilderness of overwhelming sorrow, meet me there, allow me to see your face, to hear your voice, hold me up, bind up my gaping wounds, comfort me with your Holy Spirit and bring me peace that is beyond comprehension. Father enable me to be a comfort to those you put in my path across that traverse. By the power of your Spirit, put words in my mouth to build up and be salve, be refreshing and hope. Make my face radiant, may your light overflow to those around me. Lord I call upon your name – be faithful to your promises, uphold the glory of your name. “God is love,” this is what you claim about yourself. Let your love be so clearly and mysteriously known by those who turn their faces to you.

It’s just after 5pm now and we’ve just gotten home from the hospital. It was a very, long day. A forty minute procedure equated to 7 hours in the hospital. We are well acquainted with waiting. I had plenty of time to check emails and texts and Facebook. I am overwhelmed by the outpouring of love sent our way. Thank you to you countless folk who have called out to God on our behalf and have asked others to do the same. Thank you for your compassionate and generous hearts.

Many of you have asked how you can be of help, to let you know what we may need. Because we are still gathering data about where Allistaire’s cancer stands, we don’t know how long we’ll be here in Seattle so I hope to give more specifics on ways to help in the upcoming week. But I do know two things right now, in addition to praying, you can donate your blood. Have you done that? It is something so tangible and critical you can do to help Allistaire and other children and adults in her situation. Her hematocrit has finally started to drop. Today it was 35.2. It is never that low. The decent has begun. Dr. Gardner actually wanted to put in her Hickman line during today’s surgery. I said no way. I can’t handle seeing those things yet. I know she will need them, and probably soon, but oh they are just the most wretched sign of the reality of this all. “Access.” They call lines, “access.” Some how it is nauseating to me. They are wonderful inventions but I don’t want my child to need to be accessed! Dr. Gardner graciously agreed to wait. Anyway, back to the point. Blood. Let them stick a needle in your vein and draw out your life force. If the thought terrifies you, good, let the fear sink into you and walk forward into it. Face it. Allow yourself one tiny ounce of her pain to be your pain. If you live in Montana, you can connect to the United Blood Services website and set up an appointment in your local area. If you are in the greater Seattle area, connect with Puget Sound Blood Center.

There is something else you can do. If pediatric cancer is foreign to you, if it is a world you cannot imagine, watch the movie, “A Fault In Our Stars.” It will give you an easy taste of Allistaire’s world. If you are yet more courageous, watch the documentary, “A Lion in the House.” This documentary follows the lives of about four or five children with cancer and their families. This is a hard movie to watch, but it is an incredible opportunity to see into this uniquely beautiful and terrifying world. If you’re interested in knowing more about what life is like at Seattle Children’s Hospital for kids with cancer, watch the recently televised program, “Conquering Childhood Cancer.” I have chosen countless times to watch movies that many call hard and too sad. I willfully put myself in the position to feel pain, to get a minute taste of the pain in the characters lives, because stories reflect life and life is full of ache. It is so much more than sorrow, but being acquainted with the sorrow helps me to step one step closer to understanding and thus love. I want to love my fellow-man. Thank you for so abundantly loving us!

Oct28

I Will Still Love You When I Die

Posted on October 28, 2014 by Conglomeration of Joy

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I reached behind the seat, in the dark car and rubbed Allistaire’s leg. “Are you okay Sweets? Are you in pain? What are you thinking?” Her sweet little voice and tender eyes respond, “I will still love you when I die.” I look over at Sten and see the glassy sheen of tears filling his eyes. She was desperate for a new doll with a pretty dress. Already, so fast, I am discovering it impossible to say no to the desires of a little girl who may not have much time left in this world. When she pointed up to the top shelf and said she wanted the doll in the white dress, a ragged cry caught in my throat. A doll in a wedding dress. “She will never get married,” stood the stark statement in my mind. We walked hand in hand back through the parking lot, my arm bobbing along with her joyous skips. “Mommy, I’m learning to skip in gym,” she declared with triumph. Immediately I saw in my mind her uniforms for school hanging in her closet. She will probably never go back to school. With certainty she will never, ever go back to preschool. She only got to go to two of her dance classes and less than a handful of her swimming lessons. I don’t know how to bear it. No, she is not dead, not now. But death is already coming to rob, to shred and tear and ravish. I think of her room, of her closet with the walls covered in her school work. She only counted to 10 for the first time the other day. It will never matter if she can hold her scissors right or read. It will not matter that her ovaries could never give her children.

Throughout this long day, Sten and I both so hoped, thought somehow there might be a way out of this. It just seemed too awful. We had literally just begun to taste of a real life all together. For so long I silently berated myself for making her cancer such a big deal. In my Bible Study discussion group, my every response seemed tied back to this agonizing battle. It has consumed nearly everything in our lives. It saturates every decision, every hope, every plan. I fear I may be swallowed whole by it or torn bit by bit into thousands of tattered pieces. I do not know how to bring this little girl home to die. So many points of her life flash into my mind. I remember so clearly sitting in my blue chair reading one evening. I felt her move inside of me for the first time. I was only 13 weeks pregnant. I remember her so sweet adorable round head and beautiful cheeks. She loves to snuggle in bed on Saturday mornings and no pleasure is greater than opening my eyes in the morning to see her bright blue eyes smiling back at me. Lord help us. Father help us.

Dr. Gardner called at 5:30 to say that she had called the pathologist. It would be another 30-60 minutes. They just had so many samples to run through. She told me that the radiologist at Children’s who looked at Allistaire’s X-ray from Friday did not think it looked too abnormal. We were not sure what that meant but stowed it away into our basket of hope. We were in the toy store when Dr. Gardner called back. There is .9% leukemia in her marrow. Just shy of one percent cancer, but it doesn’t matter. It doesn’t matter that 99% of her marrow is healthy. There is present there a marred thing, a mutated ugliness that cannot be stopped and it will not stop until it is all there is and there will no longer be red blood cells to carry oxygen or platelets to bind up wounds or white blood cells to protect against the constant invaders of bacteria and virus and fungus. I watch her play with the train set. We have told her her sickness is back. As I embrace her, she says she is sorry and then returns to the trains oblivious, utterly oblivious of what will likely come.

Allistaire’s leukemia is not a high enough percentage to qualify at this point for the DOT1L inhibitor trial. She must have 10% or more to qualify. Dr. Gardner says she will call us tomorrow after Allistaire’s MRI to talk about what’s next because at this point she doesn’t know. She has already begun talking with Dr. Pollard who is now at the Barbara Bush Children’s Hospital in Main and will also be consulting with the transplant doctors. I asked whether or not she could do the trial for transplant without remission that she did before, as I saw that it had reopened. No, no it didn’t work before, so they do not allow you to do the same trial again. And then she adds this, “if she does not get in remission, she will most likely not be offered any transplant.” My heart nearly stops. Remission. Oh what an overwhelmingly hard goal. And now I see. If this DOT1L inhibitor does not work…there may be nothing after that. Nothing. Nothing but making the most of the time that is left. This is where my whole being slams so hard against the wall. How is it possible for me to give up? How can I possibly every come to the point that we have nothing left to offer her? Can you not see this girl? This bright shining fiery flash of a girl?! Tell me how can she be extinguished? How can I possibly stand by and watch that happen. How can I ever bear the sound of silence in my house? How will I walk past that room? What will become of Solveig? How can we love her well enough?

It is so surreal to watch people go about their life when your’s has just been absolutely cut through. You hear people laughing and you see the blood seeping from your side and you feel yourself grow faint.

I feel decimated. I feel flattened and torn. Bewildered. How do we keep going? I mean, I know we will, somehow we will, but how? How do I walk forward without absolutely wasting away, skittering across the ground like a dried out husk. What have the days behind me shown me? “Lift Your Eyes.” I feel so feeble, but this is my life-line. This is my anchor. I ask my God to help me lift my eyes to see Him. Oh Father, give me eyes to see you. Give me ears to hear your voice. Help me to lean on the truth that you are the Ancient of Days. You are the Alpha and the Omega the beginning and the end. You hold all things together by the power of your will. You are the creator God. What is seen with my eyes is not all there is. Let me not be deceived into believing that this is all there is. Am I desperate for their to be something more? There is the part of me that thinks that if this finite life is all there is, if I really just turn to dirt when I die, then let me die now. Let me just be done with this life and this burden. But I know in my core that there is a mystery of such magnificent beauty from which I cannot turn away.

My Father, who art in heaven. Hallowed be thy name. Thy kingdom come. Thy will be done, on earth as it is in heaven. And give me this day, thy daily bread. And forgive me of my trespasses as I forgive those who trespass against me. And lead me not into temptation, but deliver me from evil for thine is the kingdom, the power and the glory forever and ever, Amen.

I choose to look back over the years and seasons I have walked this life alongside my Christ. He has been faithful to me. He has laid in my palms treasures of understanding, more glorious than anything else I have known – in part because they embrace what is dear to me, they illuminate the true nature of what my life consists. I love my children more. I love my husband more. I love the earth more. I love my church more. I love my flesh more. I love the other spirits in my life, my friends, my family, the person at the check out, I love them all more. Knowing God has enabled me to somehow both treasure my life more and more and also to hold it all with an open palm – to see it all as it is connected into Him. This life of mine is not just about this small window of time. This awful cancer that gnaws and destroys, it is but for a time. And scope, scale – these are some of the foundation stones that enable me to walk forward. I am finite and it is natural for me to view my life from a finite perspective, but the eternal God is beckoning me to lift my eyes – to fix my eyes on Christ and to believe Him when He says there is so, so, so much more. He promises to redeem. He promises to resurrect. He promises to wipe away every tear. I come again to that passage of His word, worn with my pondering and hope:

2 Corinthians 4:16-18

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Oct28

Every Day Is A Gift

Posted on October 28, 2014 by Conglomeration of Joy

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Every Day is A Gift. That’s what Sten’s dad says, a lot. It can sound trite. It can sound flippant. But it is a truth we rarely look at in the face. It is a gift so like the breath we breathe that we rarely even consider it. It is a monumental truth that deserves constant thanks. There is, however, a dark side to this truth. Every day, life can be taken. Every day, life can turn in a flash so that what seemed so predictable, so dependable, so unchangeable, is shown to be in actuality – well, flimsy, not as anchored down as we thought. In a breath, the whole landscape of our lives can change. It did for my dear friend’s father on Tuesday when he was diagnosed with a rare gastrointestinal cancer. It did for a little four-year old in Bozeman on Wednesday, as she and her family were uprooted and sent to Denver to fight her Acute Lymphoblastic Leukemia. It did for us on Friday.

Allistaire’s very first day of preschool began in a way I could not have imagined. On September 3rd, I woke Allistaire up early to get dressed in her little blue plaid jumper, the required dress for school. She wore the button up white shirt with the Peter Pan collar and white knee-high socks. She looked adorable, with the exception of her constant crying and moaning. Her arm hurt she said. Fear. Fear like a long sliver pierces my mind. It’ll go away I thought and good grief now the cute picture on your very first day of school is ruined. It was already an enormous deal that Allistaire was going to school. Going to school marked a victory of which few would even be aware. She looked like a normal little girl. Who could have guessed one year prior she was given a 5% chance to live. Who could begin to imagine by looking at her in that sweet little jumper, that this girl’s life had been pressed up against the door of death multiple times. Going to school meant victory, meant life. And there was this unexplainable, out-of-the-blue pain. Though she seemed to be in pain during that first school day, by the time I went to pick her up, she was chipper and said her arm felt fine.

Before cancer, I was a pretty laid back mom when it came to health concerns with my kids. Most things seem to go away on their own and rarely it seemed, could a doctor help with most of their ailments. “It just has to run its course, ” seemed to be the standard response. In general, I have a “buck-up,” and don’t’ make a big deal out of it attitude. In the weeks leading up to December 1, 2011, I explained away Allistaire’s fatigue, grumpiness, and lack of appetite with ear infection, teething and still trying to get over a cold that had required antibiotics. It was not until she turned the color of a macaroni noodle did it occur to me that something might be off. Who could have guessed their 21-month old had cancer? So these days, every single blip must be rigorously analyzed and evaluated. Every time she falls asleep in the car, I turn the situation over and over in my mind to see if some angle might reveal evidence of cancer. So it was with her arm pain. It came and it went and mostly it just wasn’t there. She didn’t really want to raise her arm and I kept feeling diligently for evidence of enlarged lymph nodes in her arm pit. When she relapsed in February 2013, a lymph node in her left arm pit grew to the size of a golf ball in a matter of a few days. I tried to talk myself out of getting too concerned. It’s probably nothing. It’ll probably go away.

On Tuesday, October 14th, Allistaire went to her scheduled appointment to see her pediatrician, Dr. Angie Ostrowski. Her labs looked great. There were a few small lymph nodes in her groin but nothing alarming, just something to watch. The trauma of the day was getting blood drawn and then five shots to continue to catch up on her immunizations since all of hers were wiped out with transplant. After her appointment we went over to the Montana State University campus to help promote the Bone Marrow Registry Drive. It was a joy to get to speak in front of a few classes and approach groups of students in the Student Union Building to encourage them to register. I was delighted to see how responsive many people were. I even had the joy of meeting an older man who overheard me talking with some students. He approached me and said that he had received a bone marrow transplant from Fred Hutchinson Cancer Research Center for AML back in 1978. Wow! That was at the very beginning of transplants. Two hundred and sixty-three more people were added to the registry as a result of that day’s efforts. I went home that afternoon with an exhausted little girl but a comfort in my heart that we had passed through one more hurdle with such great labs. The next step was to head to Seattle in late November for routine appointments with Dr. Carpenter and the cardiologist.

This Thursday morning she woke up happy and full of joy, but at some point during her bath, started to cry about her arm hurting. She cried for a while and then she cried again on Friday morning. It was hard to tell if she was making a big deal out of things. But clearly she was hurting. I hoped somehow it was growing pains. But she had a very hard morning at preschool and I was told she cried several times. In gym, she ran with her right arm just hanging and didn’t seem to want to use it. Her teacher asked her multiple times if she should call me. Allistaire was empathic that I was not to be called. But enough was enough. I was taking her in. I called and was able to bring her in right away to see Dr. Ostrowski. By the time we arrived, Allistaire glibly declared that her arm didn’t hurt. She expressed no pain during her exam except for one bizarre moment when she went from laughing to instantly crying and having a hard time catching her breath. She denied crying however. Perhaps she did not want to acknowledge the pain for fear of what that would mean. She had labs drawn again and X-rays of her arm and chest.

We waited for quite a while in that little room. Allistaire fell asleep in my arms. I called out to God in bewilderment, aghast and astonished that it was possible some awful reality was about to be exposed. I asked how many times I would have to wait in small rooms waiting for the swing of my life to be revealed. It came to me to read Psalm 34. To be honest, I read those words and wanted to cling with hope to their truth. “I sought the Lord, and He answered me; He delivered me from all my fears..The righteous cry out, and the Lord hears them; He delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit. The righteous person may have many troubles, but the Lord delivers him from them all.” But I wondered, what is the meaning of these words, for I have watched my own life forced to walk directly into my deepest fears. I have known others who love the Lord who have not known the deliverance of their child’s life for which they pleaded so long. Help me to understand these promises Father. I know the Lord delivers, but I also know He often does not deliver in the way we imagine He will or should. When the Israelites were enslaved in Egypt and God at last sent Moses to ask Pharaoh to let the people go, I’m guessing they would have preferred to have been released immediately without having to experience any of the plagues.

The door opens, Dr. Ostrowski lab-top in hand, and a look on her face that makes my heart sink. “The X-ray looks very concerning,” she told me. She proceeded to show me the hazy outline of the top of the humerus bone that indicates some sort of breakdown. It should be a smooth clean edge, but it’s not. Something’s going on there and an X-ray can’t tell us much. An MRI would be much better at giving a detailed, accurate picture that could also show the soft tissues. Her labs looked good but clearly something is not right. The one lab result that was not normal was her CRP (C-Reactive Protein) level which is a marker of inflammation. Her’s was 19.6 and should be 3 or less. After talking with Dr. Gardner at Seattle Children’s, I’m told that we just need to get to Seattle. We have to look in her marrow. I ask Dr. Gardner if this could be akin to the time prior to transplant that Allistaire stopped walking because of pain in her knees that was the leukemia pushing out of her marrow into her bones. The answer was yes and this sort of bone pain is a way some kids will present with leukemia in the first place.

In one heartbeat I saw the potential path of my life unfurling out in front of me. To Seattle? Relapse? Again? Last time she relapsed it resulted in eight months away from home and nearly losing the fight multiple times. It’s been twenty months since she relapsed and we are literally just getting to the point where life was looking like it might have returned to some normalcy. I didn’t even have to try to imagine the road before me, I knew it already. I knew it all except that final point. Death. I have not had to cross over to the other side to the death of my child. I was not even sure what treatment they could offer her. I knew a second transplant would be a likely option, and wow, how utterly overwhelming. Every single thing about it felt overwhelming. Dr. Ostrowski and I sat there bewildered with tears in our eyes, neither of us able to take in this insane reality. We left the office shaken and with the task of packing up in one day before we left to Seattle on Sunday. Allistaire was scheduled for 8am labs on Monday, 9am visit with Dr. Gardner and a 9:40am bone marrow biopsy. Not one bit of life was either known or predictable beyond that point. The texts and phone calls began in a flurry.

Allistaire kept crying out in pain so I stopped at Town & Country (our local grocery store), for some pain meds. I couldn’t stop crying. I couldn’t look the checker in the eye. I handed him my credit card and he asked what was wrong. I told him my daughter’s cancer may be back. He said he’d pay for the Tylenol and waved me on in compassion. Within minutes I had a call from Ashlei, our social worker from Children’s. She’d already put in a call to Ronald McDonald house but knew that it was packed out. She was working on an application to Alex’s Lemonade Stand to ask for money for a hotel when we arrived. Fifteen minutes later she called back to say that she been told that we should have a room at Ron Don Sunday night, and if not Sunday, for sure on Monday night. In the midst of my tears, I had to smile at our good fortune. A free place to stay and appointments scheduled just as rapidly as could possibly happen. It was stunning.

We made our way home and decided to continue on with our Friday night pizza and movie tradition. What else should we do? Sit around and cry? Plus, I was raging hungry. All I’d had to eat the whole day was one cookie. When Sten walked in with Solveig, I told her to come sit down beside me on the couch. With eyes wide, she said, “I know it’s something bad.” We told her Sissy’s sickness might be back and that we had to go to Seattle and we didn’t know for how long. She cried, tenderly hugged Allistaire and then the two of them spent the rest of the evening frolicking and laughing and enjoying their movie. Sten and I were just in shock and already ever so tired. We made all the phone calls and told all the necessary people and we sat in silence at the counter knowing what could be before us. We went to sleep knowing we might have one more day all together at home. As we lay in the dark, in tears Sten said that he was afraid. “This feels like the beginning of the end.” Yes. We both know this is a real possibility. In the night I wake up to go to the bathroom and feel the carpet underfoot. From hence forth I may walk on cold linoleum to the bathroom. I may go to sleep at night again with people moving all around and lights and beeping and sound that disrupt. I shudder at the thought as I look out into the silent darkness of my house.

The next morning I arose early and went out into the cold morning dawning. I saw the last few stars and heard the calming rush of wind in the dark evergreens on the hill. To the southwest, the new snow on the Spanish Peaks, broke white into the blue of sky. Every joy, every pleasure feels like a cutting, a gouging out. Each highlights what is at stake of being lost. I headed into town to meet with any who wished to pray together. I felt a bit foolish. Perhaps I was being overly dramatic. When my dear friend, Hope, asked if there was anything she could do, I thought yes, yes, how I have longed to gather together some of those faces that have so faithfully and generously prayed for us these last several years. If she had indeed relapsed, I knew there would not be such an opportunity again for a long time. As I looked around the room at the faces gathered there and as prayer after prayer went up, beseeching the Lord, I felt so overwhelmedly blessed. Look again Jai at the bounty He has bestowed upon you. That so many hearts would yearn, alongside mine, to both see Allistaire healed and the Lord glorified – I felt my heart and faith swell. The Lord had reminded me of the story of Shadrach, Meshach and Abednego who were thrown in to the furnace by King Nebuchadnezzar. There in the furnace with these three men, King Nebuchadnezzar saw a fourth man “walking around in the fire, [who] looks like a son of the gods.” I may be thrown into the fire. The Lord may allow it, but behold, there walks with me Christ, the Son of God. Our time of prayer was worship and praise for a God who is able to deliver and is faithful to His promises.

I could only bring myself to pack for the short-term. If we would indeed be forced to be away from home for months, I would deal with that later. So we packed on Saturday and headed out Sunday morning. This is my eighth drive to Seattle in the last twelve months. It’s beautiful and every single time I wonder if I’ll make it home. When I walked out of the door that morning, I wondered, once again, would Allistaire ever return home? Would she return home to live or to come to die? I push against the thoughts and force myself to walk down the stairs and get into the car. We’d had word that there was a room for us on the third floor of Ron Don and when we arrived, every smell hit me as familiar, and sorrow and home. Each face that greeted us showed grief and compassion and mixed joy with seeing us again and comments on how tall and mature Allistaire seems. What an incredible gift it is to have a small bit of space to call your own and drawers in which to store your things – a little island in a stormy sea.

This morning was, well, hard and hilarious. The hard was Allistaire’s absolute terror about getting an IV placed. Sten held her down, pressing his legs against hers to prevent her from kicking any more, his arms encircled her to keep her still but with red face and wild eyes she screamed, “NO,” over and over, “I don’t want a poky.” They blew the first vein on her hand and eventually got someone else to try again further up her arm. We three were hot with sweat from the stress and horror of this required confrontation. At last it was finished and the vial was full of blood. I moved to get Allistaire a tissue and hit the inside of my ankle hard. The pain was quite shocking and far worse than seemed reasonable. I went to sit back down and told Sten I felt like I might pass out. And then I did. Sten says I was out for 30-45 seconds and I awoke only after the nurse began vigorously rubbing the top of my breastbone. I quickly declared that I was fine because even in my disoriented state, I understood that I felt pretty dumb for causing such a ruckus when it was Allistaire that should have been being cared for. While Allistaire was later in the procedure room getting her bone marrow biopsy, I visited with Ashlei, our social worker. “Were you the Code Blue?” she asked after I relayed the story of passing out. Oh dear.

So, Allistaire’s labs looked great again and Dr. Gardner could not feel any lymph nodes either in her arm pit or groin which was a relief. The plan is this: We will get bone marrow test results back tomorrow. If the bone marrow is clear, we will go ahead with an MRI scheduled for 7am on Wednesday morning. If the Flow Cytometry on the bone marrow is clear, this will give us hope that something else could be going on in her bone. However, they still want the MRI because it could show the classic signs of a leukemic infiltrate that is isolated to this one part of her body. If this were the case, they would then schedule a biopsy of the bone to confirm leukemia. If the MRI results were not definitive, they would also do a biopsy. If however, the bone marrow biopsy shows leukemia, they will do the MRI just as information gathering. Dr. Gardner said that at least there’s a ray of sunlight if Allistaire has indeed relapsed. I was incredulous that there could be a ray of sunlight with relapse. Apparently a very promising new drug, DOT1L inhibitor which specifically targets the MLL (Multi Lineage Leukemia gene rearrangement that Allistaire has) is currently in trial. Even through it is still only in phase 1, I am told there is a lot of hope that this drug will be very effective. It is exciting as I remember it being talked about over the last year before it was available. The bummer part is that the trial is in Denver and the other major bummer is that it would be used in an attempt to get her into remission for a second transplant. Daunting.

I’m tired. It’s nearly midnight. We’re only a few days into this thing. When I think about what may be before us, even in the best case scenario that she doesn’t die, it is overwhelming. I was just starting to allow myself to look down the road of my life and start setting goals. If Allistaire has relapsed, this fight once again moves to the forefront, forcing everything else to the back. Yeah, I’d really like to keep running and developing my friendships and learn to do silversmithing, but the big ones are my marriage and my relationship with Solveig. I am forced to leave everything in God’s hands. In my Bible Study, we are studying the life of Moses and have just worked through the 10 plagues and the Exodus. Each time God tells Pharaoh to let His people go, He says, “so that they may worship Me.” Once they have been freed from Egypt, God gives them specific instructions on where to camp all so that the Egyptians will pursue the Israelites and God will have the opportunity to once again, show His deliverance in an amazing way that declares He is the Lord. The directions regarding where to camp and by what road to travel seem odd, they put the Israelites into another hard place where they are trapped, this time up against the Red Sea. Who am I to say what path my life should take? The goal, the whole point of my life is that I might worship the Lord and in so doing, declare by this life God has given me, that He is Lord. I have learned that to walk with the Lord is to know fullest of life. So I choose to follow Him. I see once agin, the two roads – one full of light and life and one dark and narrow. My hand is gripped in His. It is for He to decide and I know that regardless of where He leads, His Right Hand will hold me and sustain me.

Aug29

Another little girl, so alike Allistaire

Posted on August 29, 2014 by Conglomeration of Joy

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Friends, you dear people who have supported us so faithfully throughout this long and difficult journey…I don’t call you “dear,” lightly, you are precious and of great value to my heart. You have been part of the great throng of people who God has used to hold us up through months and then years of struggle and sorrow, victories and defeats. You have been generous with your hearts, your time, your money and your prayers.

Today I implore you to pray on behalf of another little girl whose story so closely resembles Allistaire’s. Now I am the one in your shoes, heart hurting from afar, prayers pleading up to heaven for God to show mercy, to make a way through and struggling to figure out how I can help. Last December 2013, while we were in Seattle for Allistaire’s chemo and appointments, my friend Pam told me of a little girl named Stevie, who had just been diagnosed with AML. She was just about 2 years old and was life flighted from her home town of Hamilton, Montana, two days before Christmas. Her parents, Keshia and Michael, walked away from their life in Montana as students and joined Stevie at Seattle Children’s Hospital, to fight alongside her. When I found out about this family, my heart and mind immediately was transported to our own horrifying December when our nearly 2-year-old beloved was diagnosed with AML. I was able to contact Keshia and visit the three of them in the hospital. I yearned, with a sort of desperation, to bring all that I had to bear to serve and care for and support these bewildered folk, whose story I so well understood.

Fortunately, Stevie went into remission after the first round of chemo, just as Allistaire did. But the chemo weakened her heart and she was unable to receive the standard fourth round of chemo, the infamous big gun – Blue Thunder (officially Mitoxantrone which is combined with high dose Cytarabine). Instead, she was given the FLAG regimen which is the standard first round of chemo for relapsed AML. She continued to be in remission, finished treatment and moved home to Montana. Sadly, this sweet girl only had two months of life at home until a routine blood test showed extremely low platelets and blasts. Keshia and I were planning to meet up together in Missoula with our girls for lunch since I was headed that way to take Solveig to camp in June. One day we were making lunch plans and excited to see each other and literally the next I was trying to take in the news that Stevie had relapsed. I knew so clearly what relapse meant – transplant. And I know what it means to have a transplant – first there is the hope that you can get into remission to even qualify for a transplant. This process alone can take months. Then you hope and pray for a match. If you make it to transplant you hope the intensity of the chemo and radiation and all the possible side effects don’t take your child down. Then there is the long, long trek out of that crevasse, trying to evade Graft Versus Host Disease while not endangering the body with defenses down because of immune suppressants. The list of awful long-term consequences are something you can’t even begin to consider. My whole heart went out to Stevie and her parents.

While initially they were in Seattle for immediate care and confirmation of relapse, they quickly moved to Philadelphia for Stevie to be treated at CHOP (Children’s Hospital of Philadelphia), in order to be closer to family support. Stevie’s heart had regained some strength thanks to Enalapril which is the same drug Allistaire has been on for her heart and will continue to be for up to five years. So Stevie was now able to get Blue Thunder. There was the long wait in the hospital for her blood counts to drop to zero and then for her ANC to rise again to at least 200. Thirty-five days later, they were able to get a break and wait for results of the bone marrow test that would tell how effective the chemo had been at suppressing the leukemia.

Five days ago I got this text from Keshia, “Well we got the worst possible news today, the chemo didn’t do anything, and her percentage of leukemia is actually higher than when we got here. And they said they will do another round (of chemo) but they don’t expect it to do anything and they don’t expect her to make it to transplant.”

This right here, this moment is when the dagger, hot, cuts right through your heart and you gasp and collapse and your eyes are wide because you cannot possibly begin to fathom what has just happened. Every step before has been hard, excruciatingly difficult and wearisome, but this, this is an all together different reality. You have now reached a precipice you wanted to block from your mind. You have journeyed far and now you stand looking into a deep, black crevasse and you are absolutely terror-stricken. You have not yet fallen and you hope desperately you won’t, but the possibility that you will be plunged into that suffocating, clammy darkness – it’s real, this is not a nightmare, this is your life and you feel yourself teetering and growing faint.

Not making it to transplant equals death. There is no other treatment for relapsed AML. If you are not in remission, you will not be offered the opportunity, the gift and horror, of transplant. Why? Because the odds are so low that you will survive, they won’t put you through it.

Every bit of Stevie’s journey comes at me in blazing, vivid detail of sight, sound, smell, touch. I know rubbing your hand across the bald curve of your child’s head, of watching them sleep, of going to bed crying and waking with tears in your eyes. I know the heaviness in your arms and legs that feels like you can hardly even stand. My heart cries up to the heavens and pleads with the Lord, “Father, Father, please, make a way through for this little girl! Have mercy oh God! Hold up her parents. Make your face shine before them. Give them ears to hear your voice and pull their hearts to you. Mercy, mercy, mercy oh God!”

This is the most recent update on Stevie’s Facebook page:

“Stevie’s leukemia did not respond to her re-induction phase of chemo. When we arrived at CHOP she had 26-36% blasts, and the results from her bone marrow biopsy tell us she now has 50-70% blasts. Whats next? We pray for a miracle. She is being admitted today for her next round of chemo, she has a 1 in 5 chance that her leukemia could respond. We pray for that to be the case, if not, we could potentially have to relocate to participate in a study, texas, Maryland, wherever we have to. Please pray for Stevie. For those of you who don’t know, Stevie has M7 AML which tends to be a little more unpredictable and harder to treat than other types of AML. Please pray for Stevie. You can help at youcaring.com/superstevie we are uncertain of the road ahead and need all of the prayers we can get.”

Please friends, I ask you, please pray for this little girl and for her mom and dad. Please call out to the God of the Universe who is able to heal. Pray for healing. Pray that more than anything, Keshia and Michael would know the comfort that only He can give in all circumstances, even the darkest. And please consider giving to them financially. I know I have asked much of you, to give to further cancer research, and you have given so generously to our family. I know there are many demands on your finances and so many worthy causes. But here, here is another example of a child’s life, an otherwise healthy, happy, thriving girl, whose life is hanging on the hope that there is some medicine out there that will cure her, perhaps some clinical trial that will make a way through.

Allistaire was given a 5% chance of survival. Her story is not yet complete, but she is alive, she thrives. I hold out hope that Stevie can make it, no matter how small the odds.

Aug22

Weakness splintered through with joy

Posted on August 22, 2014 by Conglomeration of Joy

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With trepidation I packed for yet another trip to Seattle. This time it wasn’t so much fear of test results. Allistaire seemed to be doing well and I was hoping labs, an exam and CT would confirm what appeared to be a girl full of life. Honestly I was afraid to even get on the bike. Not only had I not even sat on a bike since last year’s Obliteride, I had never sat on a road bike. I wasn’t sure how I would balance on those nimble tires or have the presence of mind to both figure out how to shift those weird gears planted on the center of the frame below the handle bars and get my legs to push up a hill at the same time. We had lots of company the end of June and into July and I just didn’t feel I had the time to train. I mean what would happen if I only had time for a few rides – just enough to make by butt hurt real good but not enough time to get acclimated? Surely I was stronger than a year ago, right? I mean, I no longer live every day sustained by the steady stream of Starbucks food and I’ve been regularly hiking a big, lovely hill near our home. I was swapping out my old mountain bike for my sister-in-law’s old road bike. It’s all fixed up she told me. Plus, it has these sweet bright blue pedals that match the bright blue water bottle holders. Bright blue is well-known to increase speed and stamina. One year prior, I got on my mountain bike with eye lids still swollen from hard crying the day before. I didn’t know how I’d make it through those 25 miles, but I knew that the news that Allistaire only had a 5% chance at life and probably less than 6 months spurred me on all the more. Never was I so determined, so motivated to the core to exert myself for the hope of better options for my beloved. Cancer research was the only thing that would give Allistaire a shot at survival. And my whole self tore open with anguished, wailing love for her. No matter what, I would ride those 25 miles.

It has been one year since that brutal day; that day that lacerated my already tattered, bleeding heart. I told myself two things. Someone has to be the 5% – whose to say Allistaire won’t be in that small space of survival? God, my God, the God who ordains every day of my life before one of them comes to be, this God is in charge of Allistaire’s life. It is He who will determine how long or short this little girl lives. Her life is in His hands and no cancer or other threat can overpower the beautiful sovereignty of God. And so here we are, one year later with her life thriving. Thus far she has been spared and while God has capacity to use mysterious means to accomplish His will, so too can He use the tangible, the measurable, the concrete. He chose to use a clinical trial through Fred Hutchinson Cancer Research and the brilliant minds of the doctors there to offer healing from certain death for my daughter. And I rejoice that even the tangible nature of chemotherapy is still mysterious as is the spectacular immune system. Right there, within the concrete is incomprehensibleness, is throbbing beauty and glory! So now I have even more reason to get on my bike and ride. I have all the more reason to shout my thanks and endure whatever pain and challenge this bike ride might present. It’s weight negligible like that of a shadow of the real thing.

At last the time came to depart for Seattle. I got on the bike just long enough to lower the seat to the appropriate height. I learned how to secure the bikes to our new bike rack and we set out. It was supposed to be a quick stop to pick up bagels for the road trip ahead. Somehow, however, a man in a very tiny teal car managed to not see the enormous shape of a Suburban and bike rack laden with 3 bikes, backing right into it. I was so flabbergasted that I could not even manage to see the mangled front wheel of the bike I was to ride. Thankfully he was an honest man and stayed to acknowledge his action and provide insurance info. We sped westward, through smoky summer skies from countless forest fires in the Cascades. In Olympia, Washington, at last we arrived and were able to get the bikes fixed thanks to the great guys at Joy Ride Bikes who made it happen despite their crammed maintenance schedule.

On Thursday, August 7th, Allistaire had another CT to check the status of the Cryptogenic Organizing Pneumonia (COP) in her lungs. We then had to head over to SCCA (Seattle Cancer Care Alliance) for a blood draw and appointment with Dr. Carpenter. I had dreaded this moment where I would have to park the beast of the Suburban, now extended by another nearly 4 feet due to the bike rack, in the cramped SCCA parking garage. There is a fellow whose name I don’t know, but who almost always works the parking booth. Over the many months of appointments at SCCA, we have a running joke about his juice he sets just outside his window to keep it cool. Our connection is clearly not deep but nevertheless joy to have familiarity with this other human, he a lovely Eritrean man. It only took eye contact for him to wave me into a reserved parking spot, vast in its proportions. I didn’t even need to speak a word and with a wave of his hand he provided for one of my bright points of anxiety about this trip. Thank you Lord I repeated. Thank you for caring for even the smallest detail of my need.

We arrived early in order to get blood drawn in time to have results back by our appointment time. Allistaire’s face turned red as she began to scream in fear of what was to come. Solveig looked terrified and wanted to flee the room. I forced her to stay, to allow the sound of those cries and the look of terror on her sister’s face to enter into her. How little she knows of her sister’s suffering, how intangible it has been to her. Here Solveig, expose your heart to the biting pain of your sister’s pain, know in very small part her reality and thus your understanding will expand and your compassion grow and one day when you look back upon these days, perhaps you will see them not only from the perspective of what it cost you, but what it cost your sister, what it cost me, what it has cost us as a family. I pray then you will know that I would have never left you had I not been forced to. When you see the closeness I have with Allistaire, I so hope you understand it is because I had to wrap my life around her’s with all the strength I possessed. She was surrounded, death pursued her and it was all I could do to try to shield her. Thousands upon thousands of times I looked at her face wondering how many more times I would be able to do so. I greedily took in the curve of her cheeks and dimple, the color of her blue eyes and I craved yet more of her because I was desperate to not have her ripped from my arms. I praise God I have never known that sort of threat on your life Solveig, but it has also had the effect that I have not cherished you as you deserve. My dear love, my first-born, please forgive me and find in your heart release for my loving you differently. I never intended to. And I fight now to gain that closeness with you that comes so easily with Allistaire. I seek to gaze into your beautiful gray hazel eyes and watch the adorable way your lips move over your toothless gap. I force myself to slow and take in the wonder of who you are, how it is possible that such a creature, so vast and individual and beautifully creative could have actually come from my flesh. My mind contorts to try to fathom that your eight year old limbs were ever wee enough to have grown inside of me. I listen to your joy as you finish book after book, consuming stories with the gift of your amazing imagination. While I have had to focus so long on your sister, you have grown taller and taller and more and more your own person in the world. I love you dearly Solveig Kailen and I pray the Lord will help me to make that known to you sweet child, that you would go out into this world knowing how very wondrous you are and dear to me. I have to trust the Lord with this brokenness as much as I must choose to entrust the brokenness of Allistaire’s flesh with Him.

Without even fully entering the exam room, Joan Suver, the amazing P.A. that works with Dr. Carpenter, swept in, pale yellow gown flowing and her voice trilling that the CT looks great. If results were going to be announced in such form I figured I might as well blurt out my request to know how the labs were. Great, great, she said. The CT showed no evidence of COP. Her white blood cell count 8.32, hematocrit 43, platelets 212, ANC 6,830, and liver functions tests 32 AST and 21 ALT. “Well she has a few freckles on her face,” I said tentatively, knowing her skin would be scrutinized for GVHD and failure to protect her from the sun. “Oh, she looks nice and white,” Joan responds. I sighed relief at good results and the freckles being allowed to only be signs of cuteness, not lack of protectiveness on my part and danger for Allistaire. Dr. Carpenter later entered with a question. uttered with laughing voice, “Did you have a transplant?” Allistaire just giggled and rolled around on the crackly paper atop the exam bed. She mostly obliged with the exam and went through the required maneuvers such as criss-cross-applesauce and my favorite, the namaste pose where both palms meet and elbows flare out perpendicular to the torso. All these positions check for evidence of skin and joint tightening which can be signs of GVHD. Once again, it was stated that having had a peripheral stem-cell transplant, Allistaire is at highest risk of chronic GVHD. “For how long,” I plead. Apparently she is at risk for up to 3 – 5 years post transplant to still develop GVHD, so no evidence now is no guarantee she is in the clear. Nevertheless for the time being, she looks remarkable. So pleased was Dr. Carpenter that the conversation about future appointments was extremely low-key. He feels no need for her to have another CT to check her lungs unless symptoms show up. We talked about her next appointment being either around Thanksgiving or New Years – it’s up to us to decide. So amazed by this release from constant doctor appointments and trips to Seattle was I that I forgot to even ask about blood tests. When it occurred to me, I tracked him down in the hall. “Does she still need monthly blood tests?” I asked with eyes wide. “Oh, no, I don’t think so,” came fast his words. Then, with head cocked to the side, he tells me just to pick a date to have her labs checked halfway between now and the time he will see her again.

We left the 6th floor and I sort of just floated out, mouth inwardly gaping at our continued good fortune. We had intended to explore the gift shop for a few minutes at Allistaire’s request; this a well entrenched tradition of ours. And then there was squealing with glee and I jerked my head to look for the source. There coming out of the bathroom, were our friends from Bozeman that we met through the Kid’s Support program provided through Cancer Support Community. I knew they were in Seattle for Megan’s follow-up CT for lymphoma. I knew that they had been given the incredible gift of clear scans. What I didn’t know is that Megan was at that moment scheduled for her very last blood draw followed by having her line pulled. What joy it is to see people from home, people who inhabit both worlds of Bozeman and Cancer. I had to hold back my hand from rubbing the fine light brown fuzz on top of her gorgeous head. My cheeks hurt with a smile that would not let down from joy that would not stop.

After a fun day hanging out with Emily, Jo and Lysen and the girls staying with my parents, it was at long last, time to get on with the business of Obliteride. Emily was giddy with excitement and repeated how great the course was. With joy she relayed that we would go down Lake Washington’s west side, around the bottom in Renton, out to Issaquah, up to the I-90 bridge, around Mercer Island, across the I-90 floating bridge and back up to Magnuson Park where we began. Only then did the terror of the actuality of those 50 miles really start to sink in. I was very, very familiar with these landmarks and knew how long it takes to drive that route, I could not imagine how I would make it all that way on a bike. Oh, and the course was actually 55 miles rather than 50 I learned – that’s just what they had to do to make the course work. Oh dear. Oh dear. This could be very bad.

On Sunday morning, August 10th, we set out from a friend’s house a few miles from Magnuson park. This was my chance to get the feel of my bike and figure out how the gear shifters worked. My dear friends knew my fear and continued to encourage me that they were here to do this with me. I cannot overstate how indebted I am to Jo, Emily and Lysen for making this ride with me and being an incredible support. They sacrificed time, money and the fun they could have had to ride by my side, supporting me, our family and the furthering of cancer research at Fred Hutch. Such amazing women I can count as dear and close. We rode the first 14 miles to the first aid station rather uneventfully. I realized quickly that if I was going to make it to the end, I had to maximize my momentum on the down hills. At one point I somehow failed to notice the tide of bikers in front of me turning right. Somehow I missed the police man too as he waved out our direction. I blasted right through the line of cyclists, narrowly missing the back wheel of one and had to make a fat U-turn, losing all speed as I approached the hill I should have glided up. I confess I did not delight, as I could have, in the spectacular views of Lake Washington as we rode along. I was intent on making my legs turn. At our first stop I did not choose to indulge in the gummy bears and chips and such. Why would I need those? After using the port-a-potty, and determining to try to enjoy myself more, we set out.

The path out of the aid station excited immediately up a steep hill. As I struggled up the incline, I spy Emily crouched down at the top, intent on getting my photo. “What are you doing that for?” I gasped. “So you won’t forget this hill,” was the response. As though I could. We continued on south along the lake and as we rounded the bottom and headed back north on the east side, I began to feel cramping in my quads. Lysen generously offered me her water bottle full of electrolytes. It soon became clear that not only was I not physically prepared for this ride, I was ignorant of what one does to prepare to endure long distance. I knew nothing of electrolytes and goo and salt and all that stuff that could help get me through. Not long later I was mystified to feel my quads turning to concrete. It was such a strange sensation of them absolutely losing their ability to function. Can you tell I’ve never really had to fight long to get my body to do what I need it to do? Around the point on the Lake where the enormous Seahawks training facility juts up out of the trees, I sat on the side of the trail while Jo and Lysen massaged my quads with the mysterious glory of BioFreeze and I chugged more electrolytes. Finally my quads released their rage and we went on. We agreed that at the next aid station I would tank up on all those essentials laid out for our consumption. I was slow enough that Lysen and Jo had the time to stop for some much-anticipated blackberry picking. Jo had rigged up a cup on her handle bars for just such an occasion.

The third aid station was situated just at the top of the first segment of the I-90 bridge on Mercer Island. There I ate salty chips, gooey gummy bears and even succumbed to a banana, my least favorite food, all in the attempt to pack in all those mysterious elements my body needed to keep my muscles functioning. I felt good as we departed but was again amazed at how even the slightest incline felt ridiculously more difficult than it seemed it should have. At times my friends rode on ahead of me to give me more time to anticipate a turn or make use of my speed down a hill. The view was beautiful as we circled Mercer Island but I soon became very, very ready to get off the island and closer to our finish line. As we headed up the western side of the island toward the second segment of the bridge, there appeared in my view a long hill, not so very steep, but so very long. I saw a few others walking their bikes and I determined I would not walk, rather I would take it in the easiest gear; surely that would work. But as Emily lied, yelling out she saw the top of the hill, I felt that now familiar sensation of my legs cramping up into rock solid forms. At one point I rode so slowly I was amazed the bike stayed upright. I could not believe I was riding slower than it seemed I could have walked. It came to me that I would have to walk the rest of the way up the hill, my quads were about to seize up. And then as I set my right foot down, it locked up solid. In an attempt not to fall over, I set my left foot down only to have that leg seize up as well. I looked helplessly down at my legs unable to remain standing, but utterly incapable of getting myself off the bike to sit down because my legs would absolutely not bend. I called for Jo and Emily who were close by and somehow I found myself sitting in the hot gravel alongside the road, my legs so tight that the heels of my feet could not even rest on the ground. I cried out for the BioFreeze, which with blessed speed Emily and Jo began vigorously slathering on my thighs. Cars and bikers alike stopped to see if we needed help. I suppose it looked as though I had crashed, so hastily was my bike discarded. At one point I asked Emily to bend my legs, but the pain was so intense I made her stop. Eventually the BioFreeze started to take effect and I grabbed each ankle, forcing my legs to at last bend. Throughout this agonizing few minutes I had the sense of having an out-of-body experience. I really had never imagined this sort of thing happening. I mean, I knew the ride would be hard, but I figured with a road bike and being a bit stronger, it would actually turn out better. I was mortified at how horrifically weak I apparently was and couldn’t help but laugh at how outrageous the whole thing was. I felt bad for my weakness so impacting the ride that my friends could be having, but I was also so thankful for their generous presence in the face of my absurd incapacity to do what I had determined to do.

We made it to the top of the hill walking. Emily called ahead to the next aid station to ask them to set aside some BioFreeze for me, as we had used up all of our supply. She hesitantly told me they also said they could send an aid car. NO WAY! No way! There was absolutely no way I was going to get in an aid car. Somehow, someway, I was going to finish this thing, even if I had to walk the last 17 miles. Emily generously offered to let me ride her new amazing bike, thinking it would be easier on me than the old mint green Bianchi. We didn’t have the tool necessary to lower her seat so we decided we’d switch at the next and last aid station. As we descended down the hill and onto the floating bridge portion of I-90, I felt my quads ever on the verge of absolute cramping again. I wanted to turn my face to the glorious wind sweeping off the winds of Lake Washington to the north, but all I could think is that I needed to get across this bridge and make it to the aid station on other side, at the top of another long hill. Once I sensed my quads, hamstrings and triceps all in cramping revolt, I got off and walked the rest of the way across the bridge. Eventually the metal clicking of Jo and Lysen’s clippless shoes joined my slow progress forward.

Turns out there was no BioFreeze left at the aid station, but I forced down more chips and another wretched banana while Emily adjusted the bikes upon which we planned to trade places. As my contact lenses conspired against me and dried out so I could not see clearly, I tried to both make the most of the speed gained on each hill and not crash Emily’s new bike on some unseen crack or hole in the pavement. At long last we were back across the University Street bridge and now I knew the streets intimately having lived five years of my life at the University of Washington and then all those months at the hospital and at Ron Don. It was sweet relief to see a dear and familiar part of the Burke Gilman Trail. We crossed 41st street, just on the north side of Ron Don. How strange it was to exist in this same physical spot exactly one year later. It was from this crossing we set out to Obliteride a year ago. How many times had I waited for bikers to pass before crossing over this line in the months we fought for Allistaire’s life. It was surreal. As we grew closer to Magnuson Park, my emotion, pressed down in order to focus on the physical challenge, now welled up. As much as I yearned to be done with this ride and off this bike, I yearned more to see Allistaire’s sweet face and hold her tight. What gift it was.

I had felt so very weak a year prior. I felt beaten down, crushed. I thought I was stronger now, but clearly, almost not strong enough to make it to the end. Were it not for my sweet, patient friends and the grace of God, I would not have made it. What takes an average of five hours, took me seven. Part of this journey, a big part really, has been about learning to accept and come to peace with being weak. Weakness was always something I reviled and fled from. I would go to great lengths to avoid those things that put my weakness on display, like playing volleyball which might seem insignificant but is just one marker of my desperate need to feel in control, not stupid, not ugly, not weak, not a burden on others, not useless. I’ve worked hard in my life to excel at what’s in front of me and I have unknowingly worked hard to protect myself from situations where my confidence would be challenged. In many ways I have been a fool. In many ways I have just been an average human, weak and made of dust, temporal and flawed. I have sought to find a foothold here and there to steady my life, to keep my head up, to keep from sinking. I have tried to pull in towards myself, to gather those identifiers that might buoy me up, that would color my life as worthwhile, as admirable. In the last two and half years, these footholds have given way. I have no job, no career, no assets, less beauty, less awareness and intelligence about the happenings in the world. While some have offered words of what a great mom I am, I know my propensity toward anger and impatience. I am well aware of my failings. I look around, wildly at times, searching for those stones upon which to stand, upon which to build my self-worth, my identity. My panic comes sometimes as anger, sometimes as tears that won’t stop. As I stand in the circle of beautiful, intelligent, accomplished women at Solveig’s school at pick-up time, I feel grossly inadequate. And I see Him out of the corner of my eye, and I know exactly what He is saying to me. He is calling me yet again, to at long last, just rest in Him. There is no panic in Him as my strongholds are torn down bit by bit. He is not anxious as He sees me sink down. He stretches out His hand and calls for me to grab hold, to stake my security in the one and only thing, being actually, that will never give way. He sees me utterly as I am. He is not fooled. He is not enamored by my attempts to look good. He loves me just because He has chosen to and because mysteriously, miraculously and gloriously, He has made me to bear His likeness. My identity rests solidly in Him, on the claims He has made about me.

So as I sat on those hard, hot rocks on the side of the road, forced to accept the help of my friends, in a most unflattering way and later as I succumbed to a massage of my weary muscles, glutes included, I gave in to my weakness and received care and kindness. I am finding strange delight at being at ease with my limits, my finiteness, me neediness, my weakness, my unloveliness. It still absolutely cuts against the grain of my natural self, but I am discovering the power and weight blown out of my fear. I am stripped and found weak, and yet I stand. I stand. I stand with head held high because He is my foundation. My Father is my strength. His power is truly made perfect in my weakness. It is mystery. It is beauty, as of another world. I grasp words to put outline to the view the Lord is showing me. While Allistaire thrives, I know at any moment the ground could crumble again. I still struggle with the sin of my anger, at the many ways I tear down Solveig when I should be the first person in her world to build her up. I have shame over that failing. I still have no work besides that of a housewife. I am still unclear on the way ahead. My life is not all cleaned up and pretty. It is in many ways ragged. I often still hit that wall of panic, of the suffocating, drowning sense that this is not how I imagined my life, this is not what I want my life to look like, this is not who I ever wanted to be. There is so much outside of my finite control and want to scream and cry all at once that I just can’t seem to fix it. But He is ever there, calling my name, extending His hand, soothing my brow, calling me to rest in Him, to trust Him, to give way to His sovereignty over my children, my husband, my days and my heart.

I want to be the strong one, the one to forge ahead. I want to be in control of my life. I want to have the capacity to determine the course of my days. I would far prefer to be the one to give than the one who must stretch out palms to receive. This year’s Obliteride was and will be quite memorable, epic even perhaps. Not in the way in which I would have wanted, but really, in a glorious way that highlighted what needed most to be highlighted. That we are people frail, at risk for all sorts of brokenness. My sister’s were the hands and feet of Christ to me, caring for me in my weakness. And in my weakness, I gave all that I had to give, which was little, but all that was necessary, and even in that there was beauty. Beauty and grace marked the day. And thanks, thanks and praise for the bounty that I celebrated having the joy to receive. It was sweetest, overwhelming joy to hold my little girl tight in my arms, to know it could have been different, so very different. It is a foreign fragrance, as of another land, to be at rest with weakness as I rest in my God, to be in need and to receive so abundantly.

Thank you to all who gave so generously in my name to Fred Hutchinson Cancer Research Center. I am indebted to you as I am to those scientists and doctors who tirelessly endeavor to find better ways to put an end to the ravages of cancer. And if you can believe it, despite it all, the whole experience has made me excited about riding again next year and the next and the next. I’ve actually started imagining the fun I could have if I had a road bike and got out regularly, barring the snow of course. I might be able to actually enjoy the scenery next year.

If you’d like to give to further cancer research but fear you’ve missed the deadline, fear not! The cutoff date to give to Obliteride isn’t until September 30th. So far, $1.65 million dollars has been raised, but this is $600,000 short of the goal. So feel free to click HERE to give to Obliteride in my name. Remember, another way to give to Obliteride is to order a sweet Smack Down Shirt. Your last chance to get a Smack Down shirt ends this coming Friday, August 29th.

There’s yet another amazing way to give. My sweet and hard-core brother-in-law Bjorn, is running the Cascade Crest 100 – a 100 mile race today, August 23rd, in the Cascade mountains of Washington. Yeah, you read that right – one hundred miles. Part of his motivation to run is to raise financial support for the Ben Towne Foundation which specifically conducts pediatric cancer research in Seattle in collaboration with Seattle Children’s and Fred Hutch. One hundred percent of all donations to the Ben Towne Foundation go to directly to fund pediatric cancer research. You can click HERE to go to Bjorn’s fundraising page and give. You can also watch a short video of Bjorn HERE as he articulates his motivation to run and you can track his progress in the race HERE.

Lastly, following are a whole bunch of fun pictures from our Obliteride weekend. After that I have included some of the harder pictures from a year ago. The last picture is of Allistaire just a few days ago, making impressive progress on her salad training. She actually declared that she loves tomatoes and cucumbers and cheered when she was served up a plate of salad for dinner. Shock and awe. And thanks 🙂

Jul22

SMACK DOWN!

Posted on July 22, 2014 by Conglomeration of Joy

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Yes, there was once a wee lass who got cancer. Who’s ever seen a bald kid except on those billboards? But there she was, little but fierce, fighting a foe who nearly took her down. But in swooped some sweet research from that powerhouse, Fred Hutch, who gave her hope for a cure and a chance to fight with the most glorious of weaponry. The battle raged on and on but she emerged – she is alive and thrives.

Do you know a baldy-top? Is there a face you behold in your mind, or in the mirror, whose life has known this fight? Far too many of those dear faces are gone. Far too many are not just touched, but ravaged by this villain, cancer.

Wanna give cancer the SMACK DOWN? Wanna join the fight to put more effective, strategic, targeted weapons in action against cancer? Do you want to obliterate cancer?

Buy a SMACK DOWN T-Shirt today!

$20 of every shirt goes straight to Obliteride which is Fred Hutchinson Cancer Research Center’s fundraising bike ride

100% of all funds go straight to cancer research!!!

My dear friend Emily, who rode with me in Obliteride last year, along with her husband Dave, have a screen printing business (Media Fly Screen Shop) and are generously crafting these shirts for only the cost of materials and shipping! That means 100% of the profits from T-Shirt sales go directly to further cancer research at Fred Hutch! Awesome!!!

Order your shirts by next Tuesday, July 29th and they’ll be on their way to you by August 4th, just in time to rock your support of cancer research on our Obliteride day. Orders for a second printing will be taken through August 29th for a shipment date of September 2nd. Oh, and by the way, there are kids sizes too and won’t they just look so cute puttin’ the SMACK DOWN on cancer?!!!

ORDER HERE NOW!!!

Get inspired – check out just one example of what Fred Hutch is up to: “Could this little thing be the next big thing: Hope for a world where tiny T cells and other immunotherapies eliminate cancer without side effects”

Do it for all the baldy-tops we love : past, present and future!

Jun13

One Year Post-Transplant Long Term Follow Up

Posted on June 13, 2014 by Conglomeration of Joy

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“The peace is partly in being free of the suspicion that pursued me most of my life, no matter where I was, that there was perhaps another place I should be, or would be happier or better in.” ~Wendell Berry

I went to see, “A Fault in Our Stars,” the other day. I wanted to see how Hollywood would portray pediatric cancer, this time in a group of three teenagers. One line stood out to me. Hazel Grace, one of the main characters that has battled cancer since she was 13, said something along the lines of, “I just don’t want this particular life.” I get that. How many times have I looked out over the landscape of my life and these gut wrenching circumstances and thought, “Can I just trade this life in for another?” This is definitely not the life I envisioned for myself.

Why subject myself to two hours of woe? Why do I need to watch cancer ravage more lives, even if they’re fictional? I knew my heart would be battered again but I find myself at times willfully choosing to thrust myself into the midst of a sad story, not for some masochistic desire for sorrow, but really, for love. I have a hypothesis. If we cultivate our imagination, we increase our ability to empathize and demonstrate compassion, and thus, to ultimately love better. One reason I delight so in stories is that they put me in the place of a person I can never be. I will only ever live one life. But stories craft a world for me that allows me to enter in and see histories and places and lives that are out of my reach, that are foreign to me. In stories I am offered a view through someone else’s eyes and I can begin to grasp the joys and wounds of another time and another place. We moved to Montana in part for our girls to have more opportunity to cultivate their imagination. How wondrous that rock and stick and hill can supply such grand stories. How even more fantastic that imagination can make our hearts swell with compassion as we imagine ourselves in the place of friends and family whose beloveds have been shot down in yet another school shooting. Empathy drives compassion which in turn produces acts of love.

Perhaps I am in greater need than the average person to cultivate this need for imagination driven love, for I am actually quite poor at loving well. I lit into Sten the other morning, going on and on about how I couldn’t stand the smell of his after-shave. When I saw the wounded look on his face, compassion did not rise up, defensiveness did. When I berate Solveig for some failing, what I have so often failed to do is put myself in her shoes, imagine life from her sweet 7-year-old eyes. I rage and bellow because I see only from my finite perspective.

I wonder too if imagination might aid me in faith. There have been quite a number of points over the last 3-4 years that I have surveyed my life and wondered, “Hey God, I’m not really sure how this is/was a good idea.” “Hey God, really? This is your grand plan? You think this is a good way to go?” “If you’re in control, why would you let this or that happen?” God calls me to trust His word, His promises. He calls me to walk by faith. In the book of Hebrews it says, “Now faith is confidence in what we hope for and assurance about what we do not see…By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.” God is up to something. The creator God is creating something out of this little life of mine. What will one day be visible is not visible now. What will be seen is not made of what is now visible! God gives glimpses in His Word of what will one day be visible, of the bounty He promises when His plans are complete. God has given me glimpses of how He has and is using these tedious and brutal days. My imagination for what may be, fuels my faith to rest in His promises. I am banking on the hope that there is more to all this than I can see.

One year ago, I could not have imagined Thursday, June 5, 2014. It was my birthday. I turned 39 and I got the most phenomenal, glorious gift I could ever ask for in this temporal life. One year ago, Allistaire was undergoing daily radiation and then eradicating chemotherapy in preparation for her bone marrow transplant. A year ago, I sat across from Dr. Dahlberg who started our meeting by saying that what we should be talking about is how there is nothing left for Allistaire, how a bone marrow transplant would give her a less than 10% chance of survival and therefore, it wouldn’t be offered to her. A year ago, her cancer had spread to eight places outside of her bone marrow and suddenly halted. No organ was touched by leukemia. A year ago, we were wading into deeper and deeper unknown and desperate, desperate hope that somehow, some way this clinical trial for transplant without remission provided through Fred Hutchinson Cancer Research Center, would save her life. A year ago, I had wondered countless times what the Lord was up to.

As I sat across the conference room table from Dr. Carpenter, in a small room looking out over Lake Union, I could not have imagined this day would ever come.

“It doesn’t get better than this,” he said. Oh how I cherish and savor those words and run them over my mouth and mind over and over, in shocked, joyous exaltation. “It doesn’t get better than this.” On Monday, June 2^nd, Allistaire had 11 vials of blood drawn for a phenomenally long list of tests. In the following three days she had an echocardiogram, an EKG, a bone marrow aspirate, a skin biopsy, a CT and saw the cardiologist, the physical therapist, dentist, ophthalmologist, nutritionist and the oncologist. Every single test, everyone, was good. The flow cytometry test showed zero percent detectable leukemia, or as the pathology report reads:

Interpretation

Bone marrow, aspirate: No abnormal myeloid blast or monocytic population identified (see comment).

Comment

There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.

Clinical

4 year-old female with history of AML.

Immunophenotyping by flow cytometry after lysis of the erythroid cells reveals that the white blood cells consists of .34% blasts (CD34+), 77.4% maturing neutrophilic forms, 5.4% monocytes and 13.1% lymphocytes.

This is how the Lord shouts His good gift to me, in these strange, wondrous words that delve the marrow of my child.

The cytogenetics/FISH report says this:

Result Summary: Normal female karyotype; No evidence of MLL rearrangement by FISH

Interpretation: These results are consistent with post-transplant disease remission.

The chimerism test showed 100% donor cells!

Her heart is functioning normally and is not dilated. Her kidney function is normal. Her liver function is normal. Her strength and flexibility are normal. There is no evidence of Graft Versus Host Disease (GVHD) in her skin, mouth, eyes or anywhere!

Her lungs show marked, significant improvement since being on steroids for the last 3 weeks for her Cryptogenic Organizing Pneumonia.

Even her immune system, her “immune reconstitution,” as they call it, is doing amazingly well! Dr. Carpenter said that he was impressed at how well her various cell types are doing. A number of her white blood cell types are at totally normal levels. Others are better than the average person one year post transplant – even despite 7 months of chemo after transplant. I cannot tell you the phenomenal number of details they looked at in assessing Allistaire but the sum statement is:

“It doesn’t get better than this.”

Yes, there are down sides. Most specifically, the targeted Busulfan, one of the chemotherapies that was part of the conditioning for transplant (as in the napalm of chemo), has most likely had a very toxic effect on her ovaries. This means that we should expect that she is infertile and additionally, because her ovaries may not be able to produce hormones as they would were they healthy, she may have delayed puberty and need hormone replacement. On the other hand, this particular clinical trial transplant did not include TBI (Total Body Irradiation) as the originally planned/standard transplant would have. What this means is that her body was essentially saved from a nuclear blast and that her pituitary gland and thyroid have been left largely untouched. TBI would have opened the door to a whole host of awful “Late Effects” as they are called.

Dr. Carpenter is such a professional that the meeting was fairly low-key, but inside my mouth was gaping and my heart was racing around doing little giddy twirls. Thank You Father God! I could never have imagined such a day. Oh I hoped for it desperately, but in a way, for a long time, I didn’t even allow myself to look this far down the road. But here we are.

A few days ago I took Allistaire in for her first set of vaccinations. All those many rounds of shots from infancy were wiped clean gone along with her marrow during transplant. At this point she can begin getting all of her vaccinations with the exception of those that include live viruses, such as Measles, Mumps and Rubella. For these, she must wait for one year once she is off all immune suppressants (steroids). And as a little side note for those who have not or are considering not vaccinating your kids. There’s a lot to say on the subject, but one point to consider is that there are those like Allistaire who simply cannot be vaccinated. They are left exposed, without defense, to horrifying diseases that can cripple and kill if contracted. When every child that can be vaccinated is, it tremendously reduces the likelihood that a sweet girl like Allistaire who cannot be, will ever be exposed to these awful diseases.

As we drove into town to go get those dreaded shots and Allistaire’s eyes welled with terror and tears, I found myself attempting to explain to her why these shots were worth it and why she needed them. I told her about the strong medicine that killed the blood in her bones so that it would also kill the cancer that lives there. And then I began telling the tale of how a woman, my own age, on the other side of the planet loved her, even though she has never known Allistaire. How this woman was willing to endure the pain of shots so that her bone marrow would release those magical stem cells into her peripheral blood and how yet another needle pierced her skin, this time to collect those cells. An airplane crossed over the North Pole where Santa lives and landed in Seattle. Then a truck picked up the little white cooler that held the cells and eventually they arrived at Seattle Children’s and I found myself walking down the hallway behind that swift, purposed woman who carried the cooler, all the way to Allistaire’s room. I was crying as I told Allistaire these details and of the color of cells in that little bag and how they hooked the line to her tubies and the stem cells flowed in. I am still so humbled that this woman who doesn’t know us, would love us so tangibly. Perhaps she was able to imagine that there might be someone on the earth that would one day desperately need what she was able to give, and so she determined to join the bone marrow registry in her country. Thank God for imagination.

It is Friday the 13th. Quite a good day really. In five days it will have been one year since that joyous and simultaneously anti-climatic day that someone else’s blood began to flow into Allistaire. For one year, that European woman’s stem cells have made their home in Allistaire’s bones and have been doing one amazing job at producing red blood and platelets and white blood cells. Now those white blood cells will get a glimpse of diseases they have never seen (polio, hepatitis, pneumococcal and many others). And in all the miraculous wonders of our flesh, those white blood cells will fight and win and store the knowledge of their weaponry and victory, to stave off any future attacks of even greater force. I am ever in awe of all of it – all of it – the intricacies of our body and how it can actually keep us alive despite so much working against it, the generosity of those who have given bag after bag of red blood and platelets and the thousands it takes to make one bag of Immunoglobins, the woman who gave her stem cells, the myriad of doctors and professionals who tirelessly give of their time and brilliance, the phenomenal generosity of those who give to Seattle Children’s and Fred Hutch to make all this medicine and testing and care possible, the blue sky and wind and a sun that rises every day and flowers that somehow come back every spring, for millions of prayers uttered into the expanse – trusting that God will hear and care and answer as He chooses, for a God that looks down from on high and considers each of our hearts, all of our ways, who knows the number of hairs on our heads, and who interjects Himself in the most surprising of ways into our world.

I have SO much to be grateful for – SO much to give thanks for. So, we’re planting a tree. I bought a tree for $49 the other day at Cashman’s nursery – a Radiant Crabapple with gorgeous pink blossoms. We will sink its roots into the Montana earth and water it and protect it from predators (deer and moose) and delight in its beauty and its reminder of all that God has made possible in the past year. And we’re going camping. It’s supposed to rain, but we’re going. God has made way for my hair to smell like campfire and for us all to wake in a small space together, dampened by the moist night air and waking too early from sunlight and bird song. Gifts incalculable.

Thank You Father. It doesn’t get any better than this. I still could never have willingly chosen this path. I could not have imagined being able to walk through such dark valleys or the joy of rising to such peaks, but God has been faithful to His word – to provide abundantly, to meet me in the darkness, to turn darkness into light and to redeem brokenness. Yet I ask for more, more God. I will keep hoping for what I do not yet see. Father, help me to walk in faith by your side. You have been SO good to me, and I am expectant.

To read all about Allistaire’s transplant last year on June 18, 2013 and see far more pictures of a year ago than I’ve added below, click HERE.

Thank you to all who have already generously donated to Fred Hutchinson Cancer Research Center by supporting me in Obliteride for the 50-mile ride this August 2014. You have made it possible for me to reach the minimum fundraising goal! If you have not yet donated and it brings you delight to imagine how your money, spurred on by your compassionate love, might be used to bring about the end of cancer and the furtherance of wondrous life for people like Allistaire, please consider donating today! One-hundred percent of all money donated goes directly to Cancer Research at Fred Hutch! Amazing!

My dear friends Emily, Lysen, and Jo are also riding, so please consider donating in their name – it all goes to the same place but helps them meet their fundraising goals as well. Just click on their name and it will take you directly to their Obliteride page where you can donate.

May31

Magical

Posted on May 31, 2014 by Conglomeration of Joy

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We pale Montanans approach the line for the ride, tentative in the foreign heat of Florida in May and unsure what this little blue pass will provide. The sign says there is a 60 minute wait. My fingers grope in the zippered pocket of my purse for that thin piece of plastic with the picture of a genie on it. I hold up the pass before the greeter at the front of the line and ask with stuttered speech, where should we go, what do we do with this pass? “Oh, right this way, ” he says and before we know it we are ushered into a line that puts us right on the ride within only a few minutes. To see the now famous princesses of the Disney movie, “Frozen,” Anna and Elsa, the wait was 180 minutes. Upon presenting the blue pass, the one with the grinning genie, we were led alone to a hallway, crafted in all the impressive skill of Disney to look like a castle, the glory of air conditioning soothing our over-heated skin. Again the magic worked and within only a handful of minutes, Allistaire and Solveig were twirling in their dresses along with Elsa and Anna, conversing about how they were both sets of sisters with two different hair colors. The pictures were taken and on we went to the next princess. It only now occurs to me that the genies grant wishes.

It did not take long for us to get the hang of using the genie pass, but every single time, as I held it up before the greeter, I felt that quavering sense that we were getting something we didn’t deserve. I felt the looks of scores of people who had been waiting long in the tiring sun, boring into my back. I could hear their questions in my mind…”Hey wait a second, why do they get to go ahead of everybody else? Can’t you see how long we’ve been waiting? Who are you to get in front of all of us? How do we get that pass?” A look passed between Sten and I. No words were necessary to know we were feeling the very same thing. That’s right, who are we to be so blessed, to be so favored, to receive so much? I hoped some might catch a glimpse of that little white button pinned to my purse strap, with the blue words, “Make A Wish.” Perhaps that glossy red scar on her chest or the too short hair might give clue. Eventually we relaxed more into the role of receivers of grace, of bounty, of undeserved favor and kindness. With open hands we accepted privilege and gift, all with the striking awareness of the paired contrast of undeserved favor and undeserved sorrow. For so long we have sat in small rooms waiting, waiting for that next stab of metal into flesh, for test results, for medicine, for blood, for endless conversations with doctors. For years now our lives have been lived with horrors few see, with sorrow so deep and pervasive, we weep when brushed against. Rarely has the question been uttered out loud, but it is there never the less. Why has this happened to us? Who are we to have our lives so plundered and ravaged? We have been the ones looking on with envy for the beauty and bounty of a simple life lived without the relentless, snarling teeth of cancer.

In short, we were astounded by the outlandish provision of this epic family vacation. When we were getting our luggage into the rental car at the airport in Orlando, a woman in the car next to us asked how much we paid for our car seat rental, so aghast was she at the $130 she had just been charged. I shrugged my shoulders and said I didn’t know, it had simply been given to us. Handing the cashier at Disney World my Visa card for the ridiculously expensive lunch, though the prices were shocking, I knew they were covered by that check given to us by Make A Wish. Money for meals everyday and payment for checking our bags on the airline were provided. On Friday when we at last allowed the girls to go into one of the innumerable Disney gift shops to select a shirt and a toy, I knew that too had already been covered.

Have you ever been to Disney Land or Disney World? One of my favorite things is that everywhere you look, the details have been attended to with exceptional care and thought. There is beauty and magic at every turn. Nothing is ordinary. Everything is over the top and splendid. So it was with our Make A Wish trip. Every last detail had been attended to and not just with some base provision but with over the top care and abundance. At Give Kids The World Village, where we stayed for the week, there was a carousel you could ride on any time of day along with ice cream in unlimited quantities from 7am to 9:30pm. There was a train, put-put golf, horse rides, visits by Mickey Mouse and Mary Poppins and pizza delivery to our “villa.” An amazing pool with a gradual slope inward, allowed even those wheelchair bound to enter the pool in specially designed plastic wheelchairs. Every morning a gift appeared in our villa for the girls and Allistaire has a golden star that was placed on the high ceiling of the turret of the star tower by the star fairy. One hundred and seventy thousand times a star has been placed on the ceiling of the Castle of Wishes, each with the name of a child who has stayed at Give Kids The World. Every detail was considered and planned for with giddy abundance. For this magical week, we simply received and received, hands and hearts full to overflowing.

Despite the exhaustion of long days walking and late nights, finally getting to bed most nights not long before midnight, the girls sprung out of bed, spazzing out with joy and delight. Left up to her, Allistaire would have worn her blue peacock-butterfly-fairy dress every day. The generous folks at Rocky Mountain Toy Company in Bozeman donated these matching dresses to the girls as part of a fund-raising endeavor for Make A Wish by Main Street Fitness also in Bozeman, and just downstairs from Sten’s office. The girls received many a compliment with their matching flashes of blue jewel and toothy smiles. Turns out both the girls also received the very important genetics from Sten and I that relishes roller coasters. Though Allistaire was too short for some of the more spectacular rides Solveig begged to go on repeatedly like Space Mountain, Rickshaw Rapids and Harry Potter, she never the less became a connoisseur of Thunder Mountain Railroad and Splash Mountain. I could go on and on about the delights of our trip but suffice it to say it was amazing. Sten and I most relished being together as a family and seeing the girls so giddy together.

Our other joy was a four-day lay-over through Atlanta to see our Georgia side of the family and most especially my 90 year-old Poppa who we had planned to see last year over Memorial Day Weekend. As with so many things, those plans didn’t work out a year ago. And yet, here we were a year later sitting out in the grass in a circle of chairs under the shade of a massive pecan tree. Both my parents are from Georgia, my mom from Atlanta and my dad from La Grange. Even though I have had far too few opportunities in my life as a dweller of the West Coast to spend time in Georgia, its pale asphalt roads, rolling hills of green and trees, liquid pink sunsets and thunderstorms are dear to me. This was my first visit back since my grandmother, who I cherished, died 6 years ago. As I walked out the door, I knew it could be the last time I see my Poppa alive. Sometimes this stretch of life, with all its gorgeous riches punctuated by pain and sorrow is just too much for me. Sometimes I fear if I started crying I would never stop, so beautiful are its gifts and so painful its losses. Jerry Sittser, in his excellent book, A Grace Disguised, talks of how sorrow expands the soul enabling it to experience more intensely and expansively the joys and woes of this life.

The week at Disney World, Universal Studios and Sea World was a whirlwind and Allistaire did great with her energy level and appetite. With the restart of steroids we expected more of the ravenous appetite we saw when she first went on steroids last July, but thus far I can’t say I really see a big difference potentially because of a smaller dose. I have actually wondered if they even prepared the liquid solution of steroids right given her non-impressive appetite, no seeming weight gain, chubby face or mood swings. Her CT next week will tell how effective the steroids have been against this strange Cryptogenic Organizing Pneumonia in her lungs. Our first full day in Georgia brought one time of throwing up and diarrhea that quickly turned into impressive quantities of near pure fluid. Early Tuesday morning, the day before we were to fly home, I had the frightening thought that rather than being a simple virus that needed to just work through her system, this could be C-Diff given how similar it was to when she had C-Diff in February. With the amazing help of my Aunt Kelli who is a nurse, by 9:20 that morning we were seeing a local pediatrician who, in conjunction with the on-call HemOnc Fellow at Seattle Children’s, assessed her for dehydration, ordered stool samples and wrote a prescription for Flagyl to use in case she turned out positive for C-Diff. My concern was that if she continued at the rate of diarrhea she had been going, she could get dehydrated fast and we would be on a plane for much of the next day. We need her kidneys in good shape! And C-Diff cannot be stopped without medication. It all turned out fine – all test results were negative and I am happy to report that yesterday’s stool was normal. I know you wanted to know that.

We arrived home Wednesday afternoon to a resplendent, green Montana fairytale land. Snow on mountains set against blue skies, green fields, trees finally leafed out, and wild flowers bursting everywhere. I went to sleep and woke up to a multitude of birds in song. I found myself smiling irresistibly at the sound of crickets and delighted at the sensation of cold feet on the kitchen floor, no longer donning Smart Wool socks and slippers. The green of the meadow in front of our house seemed almost outlandish, cloaked in a spray of yellow dandy lions. Calm and joyous peace spread silent and slow to the outer reaches of my extremities. Awww. I have not seen Montana green in two years. No matter how lovely Washington is this time of year, it is no longer my home. No, now I abide here and I have longed with insatiable desire to soak in the invigoration of this green.

It’s taunting really. Like, really, really taunting. Upon arriving home, I have had three days to unpack and repack for Seattle. On Sunday, June 1^st, Allistaire and I will again drive the 700 miles west to Seattle. Once again I am told there is no room for us at Ron Don and I am left with yet another unknown. On Monday Allistaire will start her day with Registration as an SCCA patient at 9:15 followed by a blood draw, an evaluation appointment with Joan Suver, our primary and amazing nurse with the Pediatric Continuing Care team, and a meeting with the nutritionist before we head over to Seattle Children’s for a Physical Therapy appointment and to round it all off, a CT at 4:15 to determine the progress in treating Allistaire’s lung condition. Tuesday morning, June 3^rd at 9:30am, Allistaire will have her 16^th bone marrow aspirate. Wednesday she will have an echocardiogram and then an appointment with our fantastic cardiologist, Dr. Sabrina Law. That afternoon she will have a dental appointment and an ophthalmology appointment. Thursday afternoon at 1:30 we are scheduled to meet with Dr. Carpenter to go over all test results and meet with the pharmacist, though I am quite determined and hopeful to get bone marrow results by Wednesday evening.

All of these appointments comprise the one-year post transplant LFTU (Long Term Follow Up) with the point of assessing the state of her leukemia, GVHD and the health of her organs. Thankfully, her CT on May 5^th did not show any evidence of disease outside of her marrow so this week’s CT will not involve oral or IV contrast and will be focused on looking at her lungs. I am thankful this is one aspect her health that is already known. Additionally, while a specialist will assess her heart, eyes, teeth/mouth and physical movement, there has been no evidence of GVHD in these locations based on the evaluation by Joan and Dr. Carpenter when we were in Seattle three weeks ago. The big questions are how her lungs are doing and whether or not there is disease in her bone marrow. Of course the situation in her lungs is serious and must be addressed, but obviously it is that bone marrow test that has me shaking. Allistaire has not had a bone marrow test since late January and since she has finished chemotherapy.

As has been the case so very many times, I don’t know how to pack. I don’t know if I’m coming home next week. I don’t know if this is the last Saturday afternoon at home in a long, long time. With cancer, every step forward into more treatment, is a step into darker and deeper waters. In the same moment that I am relishing the beauty of Allistaire’s gorgeous blue eyes and sweet, sweet little voice, I am scanning her cheeks for hints of pink. Though I long for a higher hematocrit from her last blood test nearly three weeks ago, I resist the urge to pull down her lower eyelid to look for anemia. Well, okay, I gave in once and told myself to knock it off. When she walks around the house, doggy clutched up tight to cuddle as she sucks her thumb, and complains, yet again of being tired, I find myself raging at her. I DON”T want to hear that you’re tired! Fatigue is that canary in the mine, the harbinger of doom. Go find something to do I yell. She sulks off and I continue the yelling and feel explosive emotion swelling my cells, causing my muscles to flex and yearn for bursting as I scream at God, raging and pleading for a normal life. Just a normal life God! That’s all I’m asking for! Dandy lions and crickets and grocery shopping for dinner and a picnic are enough for me. And I yearn for that stately noble peace that allows me to walk back into war with courage and determination. Instead I whine that I really just want to see the hay cut and to sit around a camp fire.

I just want a normal life Lord. Because the truth is I’m looking here, at this plane of existence, at this slice of reality. It still takes tremendous effort, exertion for me to Lift My Eyes, to look up, to look out, to consider lives beyond my own. I have walked up that mountain with trudging steps, so many times, having been asked again to trust the Lord with the life of my child, to be willing to submit to even her death. Dare I claim to walk alongside Abraham? Abraham could have turned away in action from what God called him to and for me there is no action possible that can thwart or determine the outcome of this bone marrow test. Though powerless I may be, my heart is a raging sea that seeks to yield to the voice of the Lord, telling it to be calm. Dare I claim further, to sit with Christ in that garden? Technically it is not my flesh that is in danger of being ravaged, but it is, it is. In Allistaire’s childish innocence, her life may be taken and she would not even know what has been lost. When I told her that if they found cancer in her bones, she might have to get tubies again and be back in the hospital, her little brow furrowed and then calmed as she exclaimed, “But I could bring my guys, right?” Yes, yes, of course Doggie and Piggy can come with you,” I replied. With this she seemed satisfied. My own heart would be utterly torn, not with neatness of sharp knife but with the ragged brutality of predatory teeth.

Let it pass from me Father. Take this burden away from me, I plead and ask over and over. I am so very tired. And perhaps it will, perhaps it will. We have had a year we never imagined would really be. Allistaire’s life has been sustained by more than double. Countless times mercy has been granted. But the past is no guarantee of future circumstances. The only promise is that He will remain faithful to hold me, come what may, and in this way the past lays foundation for future days. So I call out again and again asking for Him to be present, to hold me up, to show me His face. I listen with ear tilted back to those promises and exhortations echoed off the dark evergreens – be expectant – look for the abundance I will bring. My flesh twists and my fist clenches, but I want abundance for me, now. And I look over at Christ beside me in the garden and I see His weeping, the torrent of tears and hear His voice speak, “Your will be done Father.” Why? Why submit? Why yield? “For the joy set before Him, Christ endured the cross.” I can think of no words that more clearly articulate God’s answer for why He allows suffering and calls me to seek His face in the midst of it.

Yesterday I took the girls to the Dinosaur Park, their favorite. I determined to just sit in the sun on the bench. I had just finished reading a little story on Facebook about a brave little soul who willingly endured suffering for the love that would unfold as a result. Marleigh’s mom, Becca, posted at link to it, she whose little beloved passed from this life 5 months ago from AML. I was trying to hold back the tears when I looked up and saw my friend Kelly from BSF. Kelly was God’s grace manifest in the flesh to me that day. Through her tender words, I was reminded that there is already a bounty of life of which I can only catch fleeting glimpses. My Father, through His indwelling Spirit in Kelly’s life, helped strengthen my neck to lift my eyes. God is at work. It is simultaneously ordinary and mysterious. All too easy, I look only at my own life and demand what I feel is my right, forgetting that Christ willingly laid down His own life that life might spring up in all who look to Him. Life Eternal. Live Abundant. Is that not more glorious than the wee life I seek to clutch greedily to with my little finite fist? God only asks that I love Him and love others. Isn’t that ultimately what this is about? Through this fire, I have indeed seen His face more clearly and heard His voice which has in turn fueled greater swelling love for Him. And what if this blood spilled, these tears intermixed, are fodder and seed for life and love in other’s lives? Is that not what it is to love in this broken world? To lay down your life for the life of another is love. Can God so transform my heart into the likeness of His Son’s that I more and more willingly yield to a life broken and spilled out for the blessing of others? For the joy set before me – this is why I look up.

As I wrap up this post and at last go home to pack for the journey that resumes tomorrow, my ocean of angst is a bit more calm. My heart is little lighter. The creases in my face more relaxed. Here we go. Out again into that vast darkness where anything is possible. I cling to His promise to me, that even there, even in the blackest of dark, He will be found by me. He will give me ears to hear His voice. And I believe, miraculously, even there, with quavering, unlovely voice, I will sing praises to His name. He has been good to me.

This is the verse Kelly later texted me:

Psalm 27:13 “I would have lost heart, unless I had believed that I would see the goodness of The Lord in the land of the living.”

May12

GOOP or COP or whatever ya wanna call it

Posted on May 12, 2014 by Conglomeration of Joy

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Seems like we should be further along with this whole process. A lot has been accomplished but still, no firm diagnosis. Allistaire did great with last week’s endoscopy, BAL (lung wash) and lung biopsy. Thankfully her remaining IVs were able to be put in after she was put to sleep with a mask so she didn’t have to go through that terror. Nearly every “traditional” location was used though in those three days. Unfortunately, you can’t typically draw out blood from an IV so that means a poke in another spot. Waheed, the roving IV-Team guy, assured us he’s an expert in drawing blood from veins in the head – I think we’ll pass. The only wee complication from the lung biopsy was a small pneumothorax which is an air bubble between the lung and chest wall that can occur as a result of the needle biopsy. She had x-rays done on the portable x-ray machine one hour and several hours after the procedure to monitor it and because it was so small and didn’t get any larger, they were not concerned. Were it to be a large one, a chest tube would have been required to drain off the air, otherwise you get a collapsed lung. The one scare from my perspective (not the doc’s) was that her platelet count and hematocrit dropped slightly in Friday’s labs from Monday. The platelets went from 220 to 188 and hematocrit went from 39.6 to 36.6. These really are still great numbers and not a huge drop, but Allistaire’s platelets really never drop below 200 and her hematocrit likes to stay consistently up near 39/40. I am always on the alert for a downward trend which hails the terrifying possibility of relapse.

By the end of the day on Friday, a hypothesis was beginning to form as more and more test results came trickling in. I wish I knew how many tests for viruses, bacteria and fungi were conducted. Even for just one type of fungus such as aspergillus, a common culprit for fungal infections, multiple different testing methods are required. Twice in a week I’ve had to drop off a stool sample to the hospital lab late in the evening. One thing that I want to say as emphatically as possible is this: Pathologists deserve lots of love and credit! They are those invisible folk whose work is paramount to absolutely everything in Allistaire’s treatment. The often mundane and yucky work done in the lab is the foundation of so many decisions the doctors make. Test after test came back negative. There’s been no evidence of bacterial or fungal infection and thankfully, no evidence of leukemia in the lungs. But that leaves the big fat question of what is going on then? The other outlier question is how this high eosinophil count is connected. Dr. Pollard called late on Friday to say that the working idea is that Allistaire has BOOP (Bronchiolitis Obliterans Organizing Pneumonia) or more recently named COP (Cryptogenic Organizing Pneumonia). This is a non-infectious pneumonia that is actually, in someone like Allistaire who has had a transplant, a form of GVHD (Graft Versus Host Disease). Treatment for this organizing pneumonia is steroids for a month or two and then a taper. Because steroids come with their own host of bad-news side effects, the doctor’s are being very cautious and careful in making this diagnosis. For this reason, while the pathologists at Seattle Children’s have finalized their report as of this afternoon, the samples will be sent over to SCCA tomorrow and examined. COP is a relatively rare disease but fortunately the pathologist who will be going over all of Allistaire’s data has been a pathologist at Fred Hutch for 40 years and has pretty much seen everything there is to see. Again, thank you Mr. Pathologist, for your amazing long-term commitment to this field – your expertise is an amazing gift to us!

Another component of considering what treatment will be needed, was that Allistaire had to be examined today for signs of active GVHD by Joan at SCCA (Dr. Carpenter was out-of-town today). There may be a very low-level amount of GVHD on her scalp that has been sort of crusty for the last month and a tiny amount in her stomach as shown in the endoscopy biopsy. Thankfully, these are so minimal that they do not require treatment. I was delighted to hear Joan declare that Allistaire looks really, really good and that there is no evidence of GVHD in her eyes, ears, mouth, joints or the majority of her skin. Such a blessing and gift it is that she has done so well so far. Her type of transplant, that of a peripheral stem cell transplant rather than a whole marrow transplant, is well documented to produce the worst and most chronic GVHD. I can only guess that this type of transplant which was required as part of the clinical trial protocol, also has the best shot of creating GVL. Of course, I am only guessing with my crude knowledge of this whole complex world. The other news of the morning was that Allistaire’s platelets and hematocrit are at least stable at 185 and 37 respectively. It was a tremendous relief to me that they had not gone down. I was so hoping that they would just rise to their preferable lofty heights so I would have no cause to worry and far less need to cling desperately to the Lord in prayer, but wouldn’t you know it, I think He actually wants me to depend on Him. Geesh.

So as things stand now, late on Monday night, May 12th, the hope is to have a finalized pathology report by Wednesday afternoon, and thus a firm diagnosis. Dr. Carpenter will be considering Allistaire’s case and assuming this really is COP, he will determine what dose and sort of steroids he will prescribe. The goal is to give the lowest dose possible that is still effective. They will be looking into whether or not inhaled steroids would be sufficient as this would be a better option than a systemic steroid such as prednisone which is taken orally. There is of course the very negative side effects of steroids, but there is also the issue of their impact on Allistaire’s ability to fight cancer. I was comforted to learn that because Allistaire is nearly a year out from her transplant, she has already had the majority of the GVL (Graft Versus Leukemia) effect of her donor cells and they are now far more fully established than earlier in the post-transplant phase. This means steroids at this point will not be as detrimental in terms of them suppressing her ability to fight any remaining cancer cells. On the other hand, should she relapse, it seems she could be disqualified from a number of trials for being on immune suppressants (steroids in this case). Of course, the eager hope is that she is still in remission and will have no need of further clinical trials. And dare I say this, I was told today that if Allistaire makes it past one-year post transplant without relapse, her chances for relapse diminish drastically, down to 10%. Now, numbers, statistics, they’ve proven to in no way dictate Allistaire’s course, so I hold such info quite lightly, knowing she is her own complicated cancer case. More importantly, it is God who holds Allistaire’s life and He is not swayed by statistics. He will do as He pleases which is both terrifying and glorious.

Should all go as hoped, we will have a diagnosis and treatment plan by Wednesday evening and can head home on Thursday. This would be SO amazing! Joan says Allistaire doesn’t need to be seen again and doesn’t need any more labs until we return from Allistaire’s Make-A-Wish trip to Disney World which looks like it really might actually happen!!!! I can hardly believe it and I probably really won’t be able to until we are on that plane. In the far periphery of my mind is the joy of imagining the look of shock and joy on Allistaire and Solveig’s faces when we tell them that we are going to get to go on this amazing, magical trip. Again, almost too hard to believe. We are scheduled to return from the trip on Wednesday, May 28th. Then a few days later, on Sunday, June 1st, we’ll have to turn back around and head to Seattle for all of Allistaire’s one year post-transplant testing, including a bone marrow test on the 3rd.

I was so anxious about this trip to Seattle because I feared we would become entrapped here. That’s just what happened. Fears confirmed. I am not actually crazy and no, she’s not fine just because she looks fine. But, so far, it looks like we might escape true imprisonment. I leave that fear for June and that looming bone marrow test. I will tell you, it was the strangest experience to go back to the Cancer Unit – a place I have only visited once since Allistaire’s discharge last July and a place she has never entered again until last Thursday. It is a clashing of homecoming and revulsion. There were SO many faces that are just dear, dear to my heart – nurses and the Unit Coordinators and Natalie from the bone marrow team. Amazing, incredible people who have become painfully and delightfully woven into our lives grace those halls and rooms. The light and colors there are beautiful. I may have nearly forgotten how to work the fancy new TVs but I have not forgotten the deep, pervasive sorrow and fear of life in that place. You do not ever get over hearing a baby crying on an oncology floor. Babies should not have cancer. As I lay in that strange fold-out bed couch thing in the early morning, I remembered the countless mornings, nearly 250 times, I rose to meet numbers on a page, those blood counts, that decreed the course of our lives. And I prayed and prayed that this would be the last time I lay on one of those beds. I have not figured out, in all this time, how to love Allistaire less. Rather it seems I cannot get enough of her and as she grows and times passes, I love her more and more. My grip on her seems no less. Help me to love you more then Lord, I cry out. Help me more and more love you and hope in your goodness and your plan for my life. Help me God Above to put my hope and faith and trust in your definition of life and victory that so very far surpasses mine.