Tag Archives: Cryptogenic Organizing Pneumonia

Dec24

All I Want for Christmas is a Bone Marrow Transplant

Posted on December 24, 2015 by Conglomeration of Joy

Winter Solstice is passed. The darkest night of the year is behind us. Ever so slowly, at a staggering speed, we make our way back toward the sun.

I can hardly believe the earth has made an almost complete orbit around the sun since that day last January when Allistaire’s immune defenses dropped to zero and typhlitus nearly took her life and ravaged her heart, a heart already made vulnerable by so very many rounds of chemo. There have been so many very dark days, so many tears, so much uncertainty, so many occasions where all appeared bleak. And yet…I cannot begin to count the number of barriers overcome, walls knocked down, doors that opened. I stand back and I survey the road behind us, it both tires me and brings elation, joyous shock, mouth-gaping awe. The world is just as quiet and just as loud and busy and frantically running around, and I stand, I stand and look around me, and really, I cannot believe we are here.

It is a grey day. There is no snow to beautify the land, no hush of quiet, no blue light of early morning snow reflecting the sun’s advance over the horizon. The earth shows no sign that it knows what has happened, what has transpired in this place. I look back, back, back over forty-eight months, to a day when I sat in this very seat on a snowy day, back to the day I received Allistaire’s bone marrow results after her first round of chemo. A zero percent, no identifiable Acute Myeloid Leukemia. I felt such utter relief. I could never have imagined how long the road would be before me, of the nearly five hundred days in the hospital that would transpire between then and now and just how sly those cancer cells would be, ever-present, ever ominous, ever intent on dividing endlessly until they foolishly commit suicide by taking the life of their very own body.

I look back, my heart and mind touching back over those points in which I was told, she probably won’t make it, her chances are so very small, in the single digits. The weightiness of looming dark walls, the snarl of danger ever lurking, threatening to strangle. We still stand in the dark, there are still looming walls and teeth flashing in the night. And as I stand in this darkness, where there is so little light to make out the landscape before me, where the way forward is cloaked and unknown…I am smiling. I want to go up to each person I pass and say, do you know? Have you heard? Let me tell you a story, a story of a little girl, little but fierce. Let me tell you a story of terror, of heartbreak, of hope, of glee, of overcoming, of victory. For no matter what lies ahead, today is a day of victory. This day is a day of incalculable gift.

Sten and I sat with Dr. Summers as she went through paper after paper, our Data Review as it’s called. We looked at the highlighted numbers that tell of the wonders within, of kidney’s and liver, of heart and marrow, of lungs and bones, of cells and antibodies. Her marrow, so beat down by twenty-three month-long rounds of chemo, no longer produces almost any cells and yet, there is also no sign of her leukemia cells. Her sinuses still harboring tenacious leukemia cells, many wiped out, but there is a clear remaining presence of this disease. Her heart is not a normal heart, it gimps along but has made a marvelous recovery from the days ten months ago when it seemed right on the cusp of utter collapse. In short, it is clear that there is no chance to cure her of her cancer without the most intense myeloblative assault possible, and while her body has incredible vulnerabilities due to all the ways it has been injured and weakened from her treatment, it has a chance to maybe, just maybe weather this storm.

Dr. Summers went through all the steps of the harrowing process before her, and of a plan, a collaboration of the Bone Marrow doctors, the Heart Failure cardiologists and the ICU staff. This plan might look simple on paper but represents incredible teamwork on the part of these different specialties. Today is not just a victory for our family, it is something for many people to be proud of, for it has taken the tenacity and compassion, and skill and brilliance of many folk to bring us to this point. I thank in particular Dr. Marie Bleakley who has for so long been working behind the scenes to make this transplant an option for Allistaire, for Dr. Yuk Law and his wonderful team of cardiologists for constantly reconsidering Allistaire’s heart and how best to support it and build its strength, and for Dr. Todd Cooper along with Dr. Rebecca Gardner and Dr. Jessica Pollard, three incredible oncologists whose ability to straddle the research and clinical care of patients is impressive and have been directly responsible for helping to keep Allistaire’s cancer at bay for so long, enabling time for her heart to heal. It is simply a gray and rainy day here in Seattle, Washington, the silhouette of evergreens, firs and hemlocks, and the delicate outlines of maples and madronnas, dark against the sky. It is a quiet afternoon in the hospital, one day before Christmas, nothing to draw attention to how remarkable this day really is.

It has not been hard to call out to the Lord for help. The words come easy and swiftly, “Help! Hold onto me! Hear my cry! Mercy, mercy!” But today I feel oddly mute, sitting in this quiet corner of a hallway looking out at a day turning to night. What words? What words Lord can I bring before you to say thank you? I come before you empty-handed. I sit down at your feet and just shake my head, in wonder, in awe, in delight. Thank you Lord. Thank you Father, maker of the heavens and the earth and all that they contain. I can say only, You are beautiful, I stand in awe of you, and I love you Lord, you are dear to me.

There have always been two fights, parallel, interwoven, side by side. The fight of the flesh and the fight of the spirit. Today is a moment of victory. Today the door has been opened to transplant, of one more chance to eradicate the sickness within Allistaire that threatens her life. Today marks the entrance to many more walls and doors and dangers, but it also marks the only possible way forward, the only hope for Allistaire’s life. The fight of the spirit has always been that of Abraham, will I yield? Will I lay all my treasure, all my hopes for life at the feet of the Lord and say, “This life of mine, this life of my child, so bound together, they are Yours. You are God and all my days are for You to determine. I yield.” I enter the throne room of grace only because Christ has gone before me…He has gone before me that I am invited into the presence of the God of the Universe who actually loves me. I am able to yield because He has so demonstrated His love for me in this, that He sent His only begotten Son, so that whoever believes in Him will not perish but have eternal life! Perfect love drives out fear. I can walk forward into the dark without fear, because no matter the days ahead, I know there is light on the horizon. No matter the dangers, I cannot perish. And should this transplant take Allistaire’s life instead of restore it, while we will miss her desperately, she will have been made whole and free. She will live.

It is now Christmas Eve, a Christmas Eve like none I have ever known. For the first time in my life I did not select a Christmas tree and delight in decorating it with Christmas music playing in the background. I cannot think of a Christmas Eve that I have ever spent alone. But for the first time in a very long time, I did not wake up sad. We have a glimmer of hope. The door to transplant has been opened. Allistaire must make it 10 more days without getting sick or having some major issue come up in order to start the transplant process. Next Monday she will begin the first of five “fractions” of focal radiation to the tumors/chloromas in her sinuses. She will then have New Year’s Day and the weekend off before officially starting the transplant process on Monday, January 4th with TBI (Total Body Irradiation). Once you begin the actual transplant process, there is no turning back.

Ten days. In the scope of things, a short bit of time, but an enormous amount of time in which something could go wrong and this open door can go swinging shut again. But tonight I go to bed with joy curled up in my heart, joy to have been allowed to walk this far forward and hope for more open doors. Tomorrow is Christmas. Tomorrow is the day we celebrate the birth of Jesus Christ. Tomorrow is the day that changed everything. The birth of Jesus Christ, Immanuel, God with us, is the basis for our hope that no matter the road before us, there will be beauty and redemption and life.

Dec20

Brewing Storm

Posted on December 20, 2015 by Conglomeration of Joy

Standard

How many times has my Father extended His arm out over the waters and invited me to walk – to step out on shifting waters, to look Him in the eye and trust Him, to put one foot in front of the other and put all my hope in Him? How many days have the winds buffeted and the sky seemed angry and black?

I wrote the words above on June 18, 2013. They continue to ring so true. I was prompted to look back at that day because Sten and I received an uncommon, hauntingly beautiful gift today. A strange message in broken English came to us from across the world. Allistaire’s bone marrow donor from her transplant in 2013 reached out to us, seeking to make yet another connection with us, this time in voice, in words, no longer disembodied. Katja. Katja. A beautiful name. I say it again and again, like savoring a morsel, I smile as I say it, gleeful, amazed, surprised, utterly delighted. This is the woman who gave of her bone marrow to my child, who saved the life of Allistaire, whose very cells have divided over and over and over and over for two and a half years to sustain my girl’s life. SHE’s REAL!!! I mean I knew that, of course she was real, is real, but somehow, to know her name, it is gift. And it is gift to have even the smallest means of bowing low before her, to show her honor, to convey my thanks, to cry big silent tears of joy and gratitude for her compassion, her generosity, her selflessness to give, to give to a stranger.

Thank you Katja.

The timing of her contacting us is interesting. I’ve actually been thinking about her, about Katja, this woman who was born in the same small span of time as myself. She and I, two women who have the great mysterious privilege of giving life to Allistaire. You see, if Allistaire is able to move forward to this second transplant, not only will all of Allistaire’s cancer cells hopefully be annihilated, so will Katja’s cells. It grieves my heart. I will mourn the death of those life-giving cells, those cells, those bits of Katja that have done so much for Allistaire – those cells that have protected her from bleeding out by making platelets and the white blood cells to fight infection and those most precious red blood cells who carry oxygen throughout her flesh. I will be cheering on the radiation and the chemotherapy and praying for their utter conquest of her marrow and yet, just as with her first transplant, there will also be loss, also be grieving.

The way forward is still unknown, but millimeter by millimeter we take ground. The week seemed to begin on Tuesday with her brain MRI. Later in the afternoon we were in clinic so she could get platelets and I was eager to hear from Dr. Cooper, hoping to hear that the chloromas were vastly reduced yet again and she was considered in a good position to move forward with transplant. Allistaire was busy with the Childlife Specialists, Callie and Jen, pressing her inked hands against great glass orbs. Having watched Lilly’s hands being placed against those same glass ornaments, I asked Callie to help us with this now, to preserve a bit of Allistaire, for the possible times ahead when it may seem hard to believe she ever existed, when memories of her could blur and fade. It was a uniquely painful and bittersweet moment, watching her joy at doing crafts and yet knowing in my heart why this was happening, knowing what very well may come true. It was in the midst of her cheerful chatter with Callie and Jen that Dr. Cooper came to the door. “Is it good? Just tell me…” He raises his shoulders and lets them slump back down.

The two chloromas in her sinus maxillary on the right and left have decreased both in dimension and bulk but there is a small new 1 X .8 cm chloroma on the right side. All of a sudden, when I least expected it, I yet again had the wind knocked out of me. I shake my head in bafflement, only sort of hearing as Dr. Cooper voices the possibility that this could take the option of transplant off the table. “This could be considered progressive disease…” But, but, but this is the nature of chloromas. This is exactly the sort of disease she’s had for the past three years. But, but, but…I called Sten trying to explain this news, gasping at the thought of there being nothing left. I mean, there are other trials, but we can’t just keep doing this forever. An internal conflict insures, the question of how far do you push, just how far do you go? Is stopping giving up? Lord have mercy. And what does it look like to have mercy? Is mercy finding a way forward, a tiny crack in the granite for the water to seep through? Is mercy a closed-door, a ceasing from struggle? But how? Ever how? How do I take this girl home to die and what would death look like? Because I know I don’t want it to look like those chloromas taking over her face, stealing her away right in front of me, agonizing pain. Oh God, Oh God, I’m going down and all the world blurs with tears and the scaffolding of my flesh feels like it’s giving way. Just don’t give her red blood I think, my breath quick, she’ll just get tired, she’ll just sleep. Yes, that seems the best way, I think, and I walk back to the room, to the room where my fluffy-haired, bright blue-eyed girl smiles her cooky little grin.

My alarm goes off. It’s Thursday morning and I lie eyes wide in the dark, a heaviness on my chest. Oh God. Oh God, what will this day hold? I think of those nights when I would go to bed crying, wake up crying, having to find a way to just will my legs out of the bed, to force my feet upon the floor, to rise and begin and face whatever might come my way. A luxury car commercial playing recently, quotes what is often credited to Abraham Lincoln, “The best way to predict the future, is to create it.” Hah! I laugh a sad weak laugh. Wouldn’t that be nice? It has become abundantly clear how little I can do to create the future I long for. The Christmas songs, taunt and ask, “All I Want for Christmas…” I cry in the store as the song cheerfully plays on. All I want for Christmas? All I want is for my little girl to live, to not die, to not be ravaged and stolen away.

In the dark, I walk through the room to the shower, careful to be quiet and not wake Allistaire who is ever no less than 10 feet from me. I pray, ineloquent, little fits of words, bits and bursts as I rinse out the shampoo, seeking the Lord, turning toward Him, longing to align my heart with His. In weakness and fatigue, falling before Him, not crawling and quaking in fear, but fear of the Lord, a fear that says, Yes, Yes, you are God and I am not. You are God and you are my dwelling place, you invite me into the shelter of your wing. I am weary, I am frail and broken and you draw me to Yourself, you entreat me to come, and I have no strength to walk and somehow my Jesus comes and carries me to the throne and I say, You, You are God and I am not. That is the sum of my prayers. You Oh God have created the future, all of it, the past, the present, the future. You know what this day holds and it is all swept up into the beauty of what you are creating. In You, and You alone I trust most high God, who has come down low to me. You have demonstrated Your grace, Your compassion, Your tenderness and I rest. You are the place, the person in whom I choose to trust. You know this day, Lord, I do not. It is your day Lord. She is your child God. Oh Lord, do not let me go.

My heart slowed as I saw that Dr. Bleakley would be joining our meeting, The Arrival Conference, with Dr. Laurie Burroughs leading our time. Did her presence mean it was all over? Was she here to help convey the hard words that they had decided not to allow Allistaire this transplant because of the new chloroma? It soon became clear that we were marching forward, that this chloroma had in fact caused them to push forward the process to begin the conditioning a week earlier. Dr. Bleakley was there to provide continuity. Dr. Bleakley said that prior to getting these most recent MRI results, she was still considering whether or not a reduced intensity conditioning transplant might be better for Allistaire, given her heart. She said that this chloroma had made it clear that nothing less than the full force of all they could throw at her had even a chance of ridding her of this disease.

“You know Jai, most transplant centers would not do this transplant. There are doctors on our service that do not think we should do it. There are parents who would choose not to.” The night before I had read through the protocol for the transplant and all the details of what could go wrong, of side effects. There were of course the usual side effects – nausea, vomiting, temporary hair loss, fatigue, weakness/loss of strength, fever, loss of appetite, diarrhea, increased risk of infection. But then,words taking up no more space than the others, yet whose weight left me gasping – sterility, brain injury, kidney failure, liver failure, heart failure, multi-organ failure, death. Death.

“[Your child] has been diagnosed as having a fatal malignant disease that does not respond to conventional therapy. Although remission may be able to be obtained for some length of time in a few cases, relapse will most likely occur after a short while.”

Those two faces, faces of two women I have come to know over the years, women in whom I have placed my trust, women who are brilliant, women with compassionate hearts, they tell me “not only is there a chance Allistaire could die in transplant, but there is a very good chance that she will die in transplant…Are you sure you want to do this?”

It feels as if I have always known this, as though all my life I have known about bone marrow transplants and the reality that they are brutal on the body and can kill in an effort to cure. My heart pauses, looking out over the distance, looking out to the horizon, heart heavy and I say, “Yes.” Yes, because we know what will come for her if we don’t try this. There is nothing left. We have at long last come down to this last great undertaking. I had an image in my mind the other day of Allistaire grown, crying and angry, demanding to know why I had not just let her die. I was driving east, away from Seattle, to stand witness at Lilly’s memorial, to extend my hand and heart in solidarity with Heather. Sometimes I look at Allistaire and it seems impossible to me that she has cancer. Does she really have something inside her that will rapidly kill her were it not for the enormity of this intervening? But she looks so alive. But I love her too much. But she is just unfurling all the more, day after day, new delights in coming to know who she is, who she will become. But, but…but all my love and all my yearning for her, all my delight of looking into her eyes and hearing her voice, it is not enough, I can not stop what will be.

Yes. Yes, I understand the risks. Sten and I choose to walk forward, knowing it is entirely possible that we are entering into the last weeks with her. I have to stop myself from thinking it every time I look at her, every time I delight in the sweet curve of her cheeks, the swoop of her nose, her hilarious mannerisms, her perpetual coloring of rainbows and inability not to dance at even the hint of music, of her constant tip-toe walking, her goofy laugh, her tender face that tells me, I love you mommy. I just feel my whole heart shattering in sorrow, my esophagus tightening, threading to cut off my breath. Every joy feels like a double-edged sword, every joy a cutting, the threat of severing. Somehow God just help me to live out this day, to take joy in this day and not let the possibility of tomorrow’s sorrow steal away today.

We left SCCA (Seattle Cancer Care Alliance) Thursday afternoon with the plan to go to clinic at Seattle Children’s later that day in anticipation of her bone marrow test on Friday that would also include a LP (Lumbar Puncture) to test for leukemia in her spinal fluid and Intrathecal Chemo (chemo that goes directly into her spinal cord). But upon entering our room at Ron Don she felt warm and with dread I took her temperature. 101.6 degrees, a clear-cut fever. Along with the fever, there was a strange rash of red spots on her arms and legs. And in a flash any remaining days at Ron Don were swept away. We went to the ER where blood cultures were drawn and antibiotics started. The next day a bloodstream bacterial infection was confirmed, eventually the bacteria being pinned down to a common bacteria on human skin, Staphylococcus Epidermidis. Vancomycin was started and eventually, Vanco-locks as well, which means the nurse inserts vancomycin directly into each of the two lumens of her Hickman Catheter and allows it to sit for eight hours at a time with the goal of ridding the actual plastic tubing of the bacteria, given it’s propensity to grow on such material.

Fortunately, the mysterious red spots went away and she has had no further fevers. She’s feeling great and doing well despite now being stuck in the hospital. We have a sweet room, Forest A Level 7 room 219, a room that looks out over the western end of Lake Washington, that allows a view of the sunset and the Space Needle. If all goes well, she will be in this room for the next few months, with the earliest departure being sometime in February. If all goes well, she will begin focal radiation to the chloromas in her sinuses on Monday, December 28th and continue through the 31st. TBI, which is considered the first segment of conditioning, would begin on Monday, January 4th and wrap up the two-a-day sessions on the 7th. Next would come the chemotherapy, Fludarabine, for three days. A “day of rest,” and then the actual transplant/infusion of donor cells on Tuesday, January 12th.

This all feels so far off and yet it is coming in fast, just as I want the days to slow that I might savor. She has to remain in the hospital the next two weeks in order to complete this course of Vancomycin which ends up coinciding with beginning the actual transplant process. The upside to being in the hospital is that we are able to start tackling the tests and tasks that remain to get her ready for transplant. Three major tests have already been completed: the brain MRI, the bone marrow biopsy and aspirate and the chest CT. The chest CT yesterday showed that the COP (Cryptogenic Organizing Pneumonia) in her lungs has improved, with one spot being completely gone and the others reducing in size. This is a huge relief, as the requirement to move forward was stable or improved disease in her lungs. We should get bone marrow results by the end of tomorrow or Tuesday at the latest.

Tomorrow is a very, very big day. Tomorrow Allistaire will have an echocardiogram and EKG, which feels like her biggest hurdle. The doctors again want to see stable cardiac function. While her BNP (measure of heart distress) had gone down from about 800 to the low 400s, it jumped back up as seen on Saturday morning’s labs. Dr. Kemna explained that a small change in the body and/or heart can produce a relatively big change in the value of the BNP. Dr. Kemna thought Allistaire looked great when she examined her on Saturday and was delighted to report she felt very warm and well profused. So we shall see soon enough. Tomorrow Allistaire will also have a nasal swab, nasal flush and a rectal swab all to test for a variety of viruses. Some of the tests would block her from moving forward and others would simply be for the sake of information gathering. She will also see the dentist to get a baseline of her oral health. Sarah, the physical therapist, will do an evaluation of her range of motion as this can be impacted by the transplant process of being in the hospital and by GVHD (Graft Versus Host Disease).

Thank you to so many of you who have continued to walk faithfully with us on this long road. Thank you for you for prayers and encouragement and Starbucks cards and meals and just for caring, for remembering us.

Tonight our little family of four dwells under three separate roofs. Solveig may never see her sister again. Nobody wants me to say this out loud, nobody can bear to hear those words. I have to live the realistic possibility of those words. I don’t know how many days I have left with Allistaire. But then again, I have never ever known that. I cannot predict the future. But I rest in the One who has created it. Father, oh Father, have mercy, have mercy, mercy according to your perfect love and perfect wisdom.

If you would like to offer the amazing gift of life to someone as Katja did for Allistaire, sign up to be a bone marrow donor HERE

Dec11

Batten Down the Hatches

Posted on December 11, 2015 by Conglomeration of Joy

Standard

Batten Down the Hatches: Nautical Term – To secure a ship’s hatch-tarpaulins, especially when rough weather is expected

From hence forth, Allistaire is in lock-down mode. I will not allow her to go anywhere other than the hospital and our room at Ron Don. When she’s in the hospital she’ll be wearing a mask. The countdown has begun.

Last Friday I received THE call. The transplant coordinator called me with dates, actual “written on the books” dates for Allistaire’s transplant. Earlier that morning, Dr. Bleakley relayed to me that the pulmonologist at SCCA who cares for adult patients had reviewed all of Allistaire’s lung CTs and the testing results from her biopsy. He concluded that she does indeed have Cryptogenic Organizing Pneumonia (COP). Dr. Madtes felt confident that the testing had conclusively ruled out the possibility of leukemia, fungus and bacteria. He said that while it is not common to ever have COP and especially rare to have it more than a year post-transplant, he has seen it this far out. Also, the location of the nodules in her lungs he said are classic for COP. The treatment for COP is steroids which Allistaire began last Wednesday, December 2nd. He expects the steroids to be successful in clearing the infection and does not think it should require any delay going into transplant.

Thus we are able to move forward with her transplant. Next Wednesday, December 16th, she will be officially transferred into the care of Seattle Cancer Care Alliance and will begin a slew of testing that will take place over the course of the following two weeks. We do not have all the details of her schedule, yet the various tests will include a lot of blood tests, lung CT, PET/CT of her whole body, brain MRI, likely another echocardiogram and EKG, bone marrow aspirate and biopsy, and of course physical exams. The majority of these tests would be conducted anyway given that she is coming to the end of this round of chemo at the end of the month, but everything will be especially scrutinized in light of her ability to endure a transplant and the state of her disease which impacts the success of the transplant. All the testing will be wrapped up and conveyed to us in a “Data Review Conference,” on Thursday, December 31st.

While she is cleared to begin this process, this is really a process of final determination if she can have a transplant, it is not at all a guarantee of transplant. We all think she’s in a good place to move forward, but all this testing will verify that. This will be a very busy time full of appointments and sedations. Honestly, there are still a hundred thousand things that could stop us in our tracks. Last week Allistaire’s creatine level jumped to .9 which indicates the high possibility of kidney damage if you can’t turn it around. Because of the limitations of her heart, she was admitted to run fluids at a lower rate to help flush out the rising phosphorus, potassium and uric acid that were building up and putting stress on her kidneys. A day in the hospital helped her labs return to normal but this is just one example of how serious issues can arise out of the blue. The most immediate concern is her heart as her BNP (measurement of heart distress) was quite high last week at 824 (normal is 0-90). This lab was drawn the same morning that she had an echocardiogram that showed stable cardiac function and an ejection fraction of 43 and a shortening fraction of 21. The heart failure team think the high BNP was most likely due to getting fluids the day before, but this was a red flag for the BMT (Bone Marrow Transplant) team. Unfortunately today, it was still just as high at 830. I don’t know what’s going on but it sure is concerning. If it were to continue to trend up, again we could be stopped from moving forward.

Really and truly, there is no guarantee of transplant until the day conditioning starts. For those unfamiliar with bone marrow transplant, in general the process begins with annihilating the marrow and trying to eradicate the body of cancer cells. This first part of the process is known as “conditioning.” Sounds nice huh? It’s anything but nice. I’ll give more details another time, but suffice it to say, there is almost nothing more brutal you can do to a body than this full intensity “conditioning.” Conditioning is scheduled to begin on January 4th, with four days of “boost radiation,” to Allistaire’s sinuses where these awful chloromas/tumors have been in her face. She will then get the weekend off and have TBI (Total Body Irradiation) twice a day January 11-14th. Then comes the chemo, Fludarabine, January 15 – 17th. On the 18th she will have a “day of rest,” and the 19th will be the actual day of transplant when she receives the infusion of donor cells.

The transplant coordinator continued on with giving me dates, dates of approximately how long she’d be in the hospital and how long she’d have to stay in Seattle before she goes home. I mentally clamped my hands over my ears at this point. It’s just too much to consider. I can’t even look at the possibility of going home. I can only focus on the hope of getting her to transplant. After so many, many disappointments and cancelled plans and hopes, I rarely look more than a few weeks into the future. The cardiology scheduler called the other day to set up appointments for January and February and I laughed out loud, a sad, cynical laugh – I cannot even anticipate what this Friday holds, much less a month of two from now. Allistaire has been talking more and more lately about how excited she is about transplant because it means she can go home after that. I am totally honest with her and tell her we don’t even know if she’ll be able to get her transplant, whether or not she’ll survive the transplant and even more so whether or not it will work.

The truth is I feel beat down these days. These holidays are driving me sort of crazy. I love the delight they bring Allistaire as we decorated her little pink Christmas tree with lights and ornaments and listening to Christmas music. But everywhere I turn the holidays are just screaming in my face how far from normal our lives are, how far from the life I long for. Today has been a hard day. Yesterday evening I talked with my friend whose daughter is here for her one year post-transplant follow-up and her bone marrow test confirmed relapse as they feared. They are scrambling for options. I also found out last night that our sweet little AML friend, Ron Don neighbor and fellow Montanan has blasts in her blood and numerous chloromas. Stevie is only four and has the cutest voice you can imagine. This is confirmation that this round of chemo did not work. Like Allistaire, she is trying to get to a second transplant. I keep imagining how hard this week is for Heather as she and John prepare for Lilly’s memorial service on Saturday. Allistaire’s high BNP just makes no sense to me and terrifies me that issues with her heart could show up and this whole transplant attempt could come crashing down. She cannot just keep getting Mylotarg. This feels like her one last shot. Everywhere I turn, disaster, desperation, deepest wells of sorrow.

I was listening to a song today that had as its core the verse John 15:13 which says that, “Greater love has no one than this: to lay down one’s life for one’s friends.” Then Romans 8:16-17 came to mind where it says, “The Spirit himself testifies with our spirit that we are God’s children. Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Why did Christ suffer? Why did God ever take on the form of a frail, temporal human in the first place? Was it not all because He loves us? Because His heart is moved by compassion and He longs to be in relationship with us? He came in the form of man as Jesus Christ in order that through His suffering, His death, we have a way into eternal life with Him. His whole life and His death were for the express purpose of being light to the world, to display and demonstrate in action the love and holiness of God, all so that we would see, that our hearts would turn to Him and receive life!

Christ suffered while He was alive and He suffered ultimately on the cross. He demonstrated ultimate love by laying down His life for those He longed to call friends. I am not being persecuted for my faith in Christ and yet everywhere I turn, I cry out, “Lord God! It is all a mess! It is all ragged and torn and in disarray. This is NOT THE LIFE I WANTED!!!” I want to rage at Him. And then I bend my knee, my face to the ground. “You are God and I am not. Your ways are higher than my ways. You are other!” Who am I to say what my life should look like? Is not all my life, all my life to be a reflection of the wildly compassionate heart of God? Who am I to say how He is best displayed? Nothing in my life resembles the sort of life I thought I would have, the life I envisioned for myself. There is nothing here to display on Pinterest. When I survey my life, it hits none of the bullet points I wanted.

But then, then I must get down low, I must crane my neck up scanning the night sky and ask, what really, really do I want out of this life. Hasn’t it always been about the two commands, to love the Lord my God with all my heart, soul and spirit – with all my strength. And to love my neighbor as myself. If this is what I claim my life is about then guess what? This is exactly a perfect place for my life to be. Every single day, from the moment I wake up until I finally fall asleep is a constant seeking after the Lord, constant calling out to Him, constant praising Him, constant wrestling with Him. This is what a broken life for a child of God accomplishes: an abiding, I in Him and He in me. And He has allowed me to walk into terrifying dark and made Himself known to me there, here, that I in turn might share His comfort with others in this black place. Because it is so black, so utterly dark, it challenges one’s very core and all that is connected. I am able to love those in the dark in a way I never could have before entering the darkness myself. Sometimes the pain of this place is blinding and consumes the view. Sometimes the pain seems to ring through every last nerve, the tips of your fingers searing with hot sorrow. I seek to mourn with those who mourn and rejoice with those who rejoice.

Sometimes I scream, scream, scream in the car. Scream so hard my throat is raw. There are no words for the depth of this tearing. Father, you have brought me into this land I never sought, a land I have despised, a land that made me cringe and hoped I would never have to know anything about. It is a barren land, ugly and dangerous. And yet, in this land I have seen your face, heard your voice; I have begun to taste of what it is to walk with you. In this land I have been able to offer my hand to those who also travel this bleak road. The treasures of my life will get me no where with a retirement plan, they will not draw people to me because of my accomplishments, my travels, my career, my beautiful house, my knowledge of politics, world events…My bounty is only in the Lord and to the eyes of this world it looks empty, flimsy, small. But what if this mess of a life enables me to enter into places to love? What if this is the way I share in the suffering of Christ who laid down His life for His friends? How can I say no to that?

As I sit here, ever trapped in Ron Don, a few short weeks before we will know if Allistaire’s life opens forward toward transplant or gets shut down to a remaining few more months, I reflect on the past four years. Yesterday marked four years exactly from the day Sten and I sat down in a hospital room with Dr. Gardner and Dr. Tarlock to be told that Allistaire had Acute Myeloid Leukemia. In the midst of incredible sorrow, of feeling utterly overwhelmed, the Lord spoke to me in the quiet – “Be expectant, be on the look out for what I will do.” Had I known that day what the coming years ahead would hold, I could never have imagined how I would endure. But He told me that He promises bounty. I have never taken that to mean a guarantee of Allistaire’s life. I fix my eyes on Christ – on God who is other, who is eternal. He may grant us Allistaire’s life and He may not but I put my hope in the fulfillment of His promises to redeem and make new.

The intensity mounts, the ringing tension builds up and up and up. I long for resolution. I long for a day that I get to tell Allistaire we can go home, not to die, but to live. How glorious such a thing would be! But today we must dwell in this day, this gray flat Friday afternoon with trees bare. Father see us, have compassion and help us to endure, and not just endure, but to know your bounty, bounty here and now and hope for eternal bounty.

*I now have word that Allistaire is scheduled for her brain MRI next Tuesday, 12/15, and her bone marrow aspirate and biopsy next Friday, 12/18.

Nov21

Mysteries…

Posted on November 21, 2015 by Conglomeration of Joy

Standard

The conclusion of Allistaire’s biopsy is well, sort of inconclusive. What we can say definitively after a week of numerous tests on the sample from her lungs is that it is not leukemia, not fungus and not bacteria. Obviously this is all good news, actually fantastic news! However, there is something going on in there. We seem to be down to two remaining possibilities not previously considered. Either the spots are evidence of a recovering infection or are evidence of Cryptogenic Organizing Pneumonia (COP). The cells are described as hemosiderin laden macrophages. Actually, the description of the tissue is far more detailed than that – I will include it below just so you can be in awe of both our amazing bodies and of the task of the pathologist. In a way it would be surprising if the spots are evidence of a recovering infection given that they were not present on the previous CT, nor has she had any symptoms. On the other hand, the sort of COP that Allistaire could have is actually a complication of a bone marrow transplant typically seen in adults and is a process of GVHD (Graft Versus Host Disease). Allistaire did have COP in the spring of 2014 and was successfully treated with steroids. Again, Allistaire has absolutely no symptoms of anything happening in her lungs, just this sole indication derived from the CT.

The plan is to re-scan next Wednesday, 11/25. If the spots are the same or worse, she will likely be seen by a pulmonologist at SCCA (Seattle Cancer Care Alliance). Dr. Cooper is also consulting with Dr. Carpenter, who is a pediatric BMT (bone marrow transplant) doctor who specializes in GVHD. He is the doctor that directed the treatment of her previous COP. It is not an optimal time right now for Allistaire to be on steroids if this is the required treatment. Steroids suppress the immune system which added to the suppressive effect of chemo is a double whammy in terms of vulnerability to infection.

As of today, Allistaire has started what we hope and pray is her last round of chemo before transplant. Just like the previous two rounds, she will start with five days of Decitabine followed by Mylotarg. The exact number of Mylotarg doses is still to be determined. It sounds like given the hoped for timing of transplant, it may make more sense to do only two doses. Dr. Cooper and Dr. Bleakley are working together to sort out all the details. Oh, I should also mention that Allistaire’s cytogenetics from her bone marrow also show no evidence of the MLL rearrangement by FISH which means no evidence of AML in her marrow. This is in keeping with the clear results from the Flow Cytometry test.

As for today, Allistaire and I are delighting in having Solveig with us for a week and a half. She flew in yesterday and Sten’s parents will drive out on Tuesday. Sten will fly in on Thanksgiving morning and Allistaire will get her first dose of Mylotarg. The bummer thing is that it seems Solveig has just started showing symptoms of a cold. I don’t know how Allistaire will avoid it but I so hope she can. We are looking forward to Thanksgiving with the joy of so much family with us.

Lung Biopsy – Microscopic Description:

H&E stained sections demonstrate lung with large foci of atelectasis and collapse intersected by bands of septa with increased fibrosis and vessels with hypertrophic walls. There are increased macrophages within alveolar spaces, many of which contain hemosiderin or foamy material. Hemosiderin laden macrophages are particularly prominent around bronchioles. Also conspicuous are scattered small and large droplets of exogenous lipoid material in airspaces. Well-inflated lung parenchyma in well-expanded areas shows thing delicate alveolar spat without fibrosis or significant inflammation. Inflammation is patchy, mild to moderate and airway-centric, consisting predominantly of lymphocytes and plasma cells admixed with few neutrophils. Infiltration of inflammatory cells in the bronchial epithelium is seen, and there is associated plugs of fibroblastic tissue (organizing pneumonia) as well as mucostatsis in airways. Bronchioles also demonstrate smooth muscle hyperplasia and sub-epithelial fibrosis. Many airways have moderate to marked luminal occlusion by well-established collagen deposition (constrictive/obliterative bronchiolitis) as highlighted by Movat pentachrome stain. There is mild medial thickening of pulmonary arteries and veins show intimal fibrosis as well as muscular hypertrophy. No atypical cellular population is seen, confirmed by CD15 and lyzozyme stains. Viral cytopathic changes are absent. Fungal and bacterial stains are negative.