Monthly Archives: December 2015

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.

Dec21

I know only this…

Posted on December 21, 2015 by Conglomeration of Joy

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Allistaire’s Ejection Fraction is 44!!!!

According to today’s echocardiogram, her heart is less dilated and looking great!!!!!!!!

Dec20

Brewing Storm

Posted on December 20, 2015 by Conglomeration of Joy

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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

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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.

Dec6

Lilly

Posted on December 6, 2015 by Conglomeration of Joy

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With only half an hour before Allistaire would be done with school, I ran to the 5th Floor PICU, sweating in my shirt and wool sweater, boots heavy. With sweater stripped off, I donned the ugly pale yellow gown and one blue glove. As I drew back the curtain and entered the room, heat slammed through my body, my hand shaking as I struggled to get on that last glove over a hand slick with sweat. All strength left my legs; I felt as though I might collapse. What here? What is happening here? But the reality was glaring, my eyes closing against the intensity of the scene before me. Breath caught in my throat, gagging. The family so gracious, holding onto me, arms around steadying. Who am I to be comforted when before them lay the unfolding of all of our worst fears, this brutal culmination of years and years of struggle?

But I had been in that room only two days before. We knew it was bad. She was breathing fast, her little chest heaving in rapid expansions. The fungal infection could get worse before it gets better the infectious disease doctors had said. It seemed it could go either way, but of course, we hold out hope, she had already overcome so much, so much. But now, the way was clear. Her mom and dad huddled around her, straining with all their flesh and heart and spirit to attend to her, this small girl the magnetic center of that room, all bodies and faces turned, intent, alert, stunned and mourning. They would do anything, anything, anything in all the universe to care for this precious, beloved little girl. Her dad adjusting the oxygen, a little here and there, her mom rubbing her tummy, speaking words of love to her daughter, declarations of how proud she is of how bravely and hard she fought, but now, now, little love you can rest, rest.

It was agony, I felt my heart being gouged out. Trembling, tears flowing but utterly insufficient to bear the tide of sorrow, just plain core sadness, pervasive, total, absolute. I glanced up at the monitor, her little heart pounding a hundred and sixty, a hundred and seventy beats a minute, a sprint, a desperate determination to keep her going. The nurse bends in low and Heather asks if it’s near. The end will come, but it is not yet very near. I have to leave, I have to go get Allistaire. Someone asks where she is and I say school and the contrast of my little girl, bright and bursting with life enjoying school felt so awful in light of the struggle playing out before us in this little room packed with family and machines.

How many times did Allistaire and I run into the two of them? How many times did we stand talking in this hospital, mirror images of one another, mother and small daughter ever at our sides, Heather and Lily, Allistaire and I. Ever coming and going, endless appointments, infusions, transfusions, labs, victories and defeats and always hope, always the determination to keep walking forward, hoping and praying for the next open door. We made sure Dr. Cooper knew that when he talked to one of us, he was talking to a group of powerful women, mothers with whom he would have to contend. We will share information, we will question and push for more, we will exert our force against the barriers and call for more, more for our sweet little girls. And here, here in this moment their paths diverging, this little girl’s veering off to death, so swift, a force unstoppable, the speed suffocating, bewildering. When did it all turn, when was the last time things were “normal?” When did she last declare with her darling, little voice, “I love you mommy.”

I had commitments the next few hours, I would try to come back. The pink never left my cheeks, a flushing like overdone blush. My socks cold from sweat and shirt soaked, everywhere adrenaline drenched cloth. I shed off those clothes and prepared to go back, back into a room where I imagined she was likely already gone. I wanted to go, I wanted to be there for my friend, if only to stand witness to her pain, to honor her daughter’s sweet spirit, but, oh how I didn’t want to intrude on so private a space. I was welcomed in. The two of them lay in the bed. It had been a few hours since Lilly’s heart finally gave out. She looked merely asleep, her chest still, tucked into the curve of her mother’s side. I could only gasp, “oh, oh…” Heather called me over and I sat there on the bed with them, her small, cool hand and her mother’s warm hand clasped between the two of mine that could not stop trembling.

Through stuttering heart and mind, I fumbled to call out to the Lord. Oh Father, Father…we are so small, so very small and weak, so frail in this dust, this life that comes and goes like a vapor. Have mercy Lord, mercy, remember that we are formed of mere atoms, and yet, yet…we are of infinite value, staggering beauty, eternal beings because you have made us in Your image. We mourn so mightily because we grieve for more than flesh, more than cancer cells and heathy cells and donor cells, we cry out for we will desperately miss this little bright spirit, this eternal being, this little child, Lilly. And here we sit, in this deepest dark of the year, as the earth veers toward Winter Solstice, our hearts groan in the dark. Our chests heave in agony, in the weight of this broken world, so devastatingly broken. Isis and ragged, desperate refugees, shootings everywhere…broken bodies ravaged in an attempt to eradicate disease threatening to consume. Yet we wait, we wait expectantly. It is the season of Advent, of anticipating the coming of Christ, the promised Savior, God Incarnate, Emmanuel, God with us. Christ who came in frailty and would die in frailty. And yet, in His very death, when He seemed the weakest, He in fact demonstrated His incomparable might and holiness, Jesus Christ overcame sin and death – He overcame. In this pressing darkness, hope, hope and a promise of resurrection, of redemption of all our sorrows, of a world healed and whole, with no more tears. Oh, Jesus, in you we place all our hope. Though my flesh it be destroyed, yet with my eyes I shall see God!

As Heather stroked Lilly’s gorgeously soft strawberry blonde short little hairs, she looked at me with eyes weary, glistening with tears, but clear, clear. “You know, Jai, you know how you wrote about being able to imagine a good life with Solveig even if you lost Allistaire? I can imagine a good life with my boys, always an absence, but a good life.” She spoke of peace, peace and rest that this fight at long last has come to an end. No more fighting. No more struggle. “Yes,” my heart repeats. This is the exact scenario Dr. Cooper has warned us of, “going down in flames from an infection in the ICU.” It has been like living out a scene from our own lives. It could have just as easily been Allistaire, it may still be. But there is peace, rest that you went just as far as you could go. You press forward, slashing the limbs before you, a barrage of barriers, you hack your way forward. How does one give up on these bright, flashing little girl spirits? Lilly, Stevie, Allistaire battling that foe AML with ferocity and wild resiliency of childhood. Can we as their mother’s give up? Can we hand them over? We will no let up, we will not cease our straining forward until at last the time may come when there are no more doors. Rest, rest in peace sweet child. You need struggle no more. You have been released. Yet, having borne witness to this day, I am all the more determined to walk forward. Yes, this too may be the end of Allistaire, but like Lilly, we will fight to the last, and then, then when the time comes to rest, rest.

I lifted her hand, kissed her little fingers. I rose from the bed and stood in the circle of those who have known and loved and cared for Lilly all of her eight years, through all of her eight years of battling this menace, leukemia. I looked in on sacred ground, intimate, precious moments. Lukkes, Lilly’s big brother, had climbed into bed next to his little sister, Heather’s arm encircling two of her children. “Is today December 4th?” he asks? “No, no I think it’s the 3rd.” Silently I gasp knowing how this date will be ever deeply imprinted on each of their hearts, this line between a life with Lilly and a life without her. I glanced up and was struck by the sight of the IV pole, encumbered with numerous pumps but everything dark, the syringes of meds still attached, but at the floor a tangle of tubing and stickers, disconnected. The monitor black where once bright green and pink and blue lines and numbers flashed declaring details of life, of a beating heart and breath. The child life specialists had taken casts of hands and a silvery print of her hand now adorned a clear glass ornament. They worked in silence, in reverence. Callie, who delights to play with Allistaire and to whom Allistaire rushes to hug, was now in this room carefully preserving tangible memories of the body of a little girl with whom she had played.

Some three hours after Lilly’s spirit left behind her broken body there in that room, Heather’s sweet sister, Heidi, leaned over and gently asked Heather if she was ready. A quiet “yes.” I don’t know how she did it. How did she will her muscles to flex, to move the distance away from Lilly, to form that gap of space between Lilly’s side and her own? My heart, already tattered, seemed to find new depths of ripping, deep agony. Was not Lilly’s body formed within Heather’s own? And had she not all her days cared so fiercely, so tenderly, so utterly for Lilly, flesh and spirit? Where did Heather end and Lilly start? The overlapping of beings, how to pull apart that which is integral to the other, woven through all layers…Heidi moved into the warm place left by Heather. And then, Heather leaned in low, looking into her daughters closed eyes, holding her hands, telling Lilly of her tremendous love for her, of the honor it has been to be her mother. Her father, John, head down on the bed, hand clasping her arm. Somehow they stood. Somehow they turned. Heather reached for her coat and the orange parent hospital lanyard, an encircling of orange she would likely never again have to wear.

I kissed her cheek. I had to go. I looked down and saw I was the only one wearing the yellow gown and the blue gloves. I was the only one in the room with a child still to protect, a child utterly vulnerable, whose immune system had been laid to waste by chemotherapy. I stripped them from me, carefully washing my hands, aware of the danger of spreading C-diff from Lilly to Allistaire.

How do you leave the hospital without your child? How do you even walk out of the room? The next day I drove into the parking garage to take Allistaire to school and to clinic for labs, to see the doctor and get platelets. Many times throughout the night I woke up and there were Lilly and Heather. She will never again have to drive into this cold dark garage. Walking through the halls, through the worn paths between clinic and Ocean Starbucks, past the gift shop, up and down the same stairwells, like hallways of your own home, I was struck…we will never again run into Heather and Lilly. I remember clearly the corner on the 7th floor where we first met, where Heather stopped me and asked if I was Jai. She told me recently that she had prayed fiercely for Allistaire when she was in the ICU, long before we first met. In fact, her whole family was praying for Allistaire. The truth is I am wildly thankful she no longer has to bear this burden so dominating it overshadows everything else. Now she can give attention to her two boys and husband who’ve had to stand in the backdrop for so long. No more labs, no more numbers to dictate your life, no more endless hours in small rooms, closed off from the rest of the world, isolated. It feels like betrayal to speak such things, and yet, what mother can choose between her children? There are two young boys who also need their mom. There is relief in no longer having to choose.

My heart is with you dearest sister, strong, beautiful, tender Heather. You have crossed over that line. You have faced a hundred thousand terrors. You’ve endure so much. Our Lord has upheld you through countless trials. And yet before you lies a new landscape, a land with new dangers, woes, joys and opportunities, open doors. Lilly will always be a part of you. You will always be the mother of three children. You will always bear the deeps scars, the wounds of this hard road. And yet, it is my sincere hope that from these losses, these searing tears, beauty will rise up, life will unfurl from death, that the Lord will be faithful to redeem. We wait in the darkness, anticipating the coming light, remembering the first coming of Christ, frail, small, a child. We cry out for His return as powerful King, with the creation we groan, we long for that day when we will wait no more, and all His promises will have been fulfilled.

“Through many dangers, toils and snares, I have already come.

‘Tis grace has brought me safe thus far and grace will lead me home.”

Then I saw “a new heaven and a new earth,”for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”

Revelation 21:1-6