Tag Archives: Dr. Todd Cooper

Sep26

Weeping

Posted on September 26, 2015 by Conglomeration of Joy

“I’m so afraid,” Allistaire cried. Afraid of getting a tube up her nose. She shook in fear, head hunched and little shoulders curled in. “Allistaire, I am not going to make you get the tube. You can decide. I’m going to let you choose. Either your tummy can hurt and you’ll keep throwing up or you can get the tube that will help you feel better even though it will be scary at first.” Rubbing her back I heard her barely audible words, “I’ll get the tubie.” Okay, okay…I went to let the nurse know. The doctors put in the orders and the nurse and I brainstormed the nurse best able to get the tube in quickly and skillfully.

Wednesday’s CT showed a hematoma on her duodenum right where the GI doc took biopsies as part of the routine endoscopy. Despite getting a platelet transfusion that morning, a swelling bloody bruise had blocked the passageway to Allistaire’s intestines thus forcing all of her stomach acid and bile up and out and preventing anything from going down. Unlike her previous ileus in July where her gut simply stopped moving, in this case there is an actual physical blockage that given time will heal. Wednesday night she was admitted to the Cancer Unit where she is getting fluids with electrolytes and as many of her meds that can be given in IV form. Unfortunately not all of her meds, especially a number of her heart meds, can be given through her IV so at this point she is just not getting them. She also has not eaten since Monday evening at the airport when she was made NPO (Nothing By Mouth/Nil Per Os). At this point, because we hope this resolves soon, she is not on TPN (IV nutrition). Because of her throwing up, her brain MRI and PET/CT which were scheduled for Thursday were cancelled due to the greatly increased risk of anesthesia.

Allistaire has simply laid in bed. She is not interested in almost any activity. She speaks very little and isn’t willing to engage in our usual joking. Her eye is bulging more and more prominently with a disturbing degree of white around her pupil. I try to make myself look at it, to say, “I see you. I love you and I will not look away from who you are and the battle you are in. I will not turn away, though it pains me. I love you. I will never turn from you my dear sweet child.” The contrast from just Monday afternoon rips at my heart. That girl ran and giggled with joy and was full of bright bursting life. This girl just lies on her side, sucking her thumb and gripping doggie. Not much of anything interests her.

In rounds Friday morning we discussed the possible advantage of a NG tube known as a Salem Sump which, using intermittent suction, pulls out gastric contents. The GI doctor did not think it was medically necessary for Allistaire to have one but was in full support to provide her comfort. Once Allistaire agreed to the tube, Catherine, one of the charge nurses, gathered the necessary materials and graciously talked Allistaire and I through the process. Allistaire sat on my lap with my arms around her. She was very brave, though terrified. The tube going down her throat caused her to gag and throw up and tears streamed down her face as she kept drinking at the insistence of the nurse in order to help the tube go down. Catherine did an excellent job and got it just right on the first try.

As soon as she could speak, Allistaire began to scream that she hated it! “I hate it! I hate it! I hate it!” she bellowed over and over, slamming her little fists on the bed. The nurses cleaned up and left the room. After minutes of yelling that she hated it, she demanded, “Take it out! Take it out! Take it out!” Without relent, her fury burst out before her, explosions of rage igniting the air. She sat on my lap, her back against my chest and I loved her. I rubbed her arms. My heart heaved.

She turned and faced me, her blue eyes blazing, sheen of tears. Blue eyes I had given her. Blue eyes from my mom, from her mom and my grandmother from hers. Five generations of blue eyes, her’s fierce and pleading. “Mommy, mommy, take it out please! Please mommy. Please mommy! Mommy please. Please take it out. I’m begging you, take it out, please take it out.” On and on. My eyes filled, face contorted and sobs welling up from the deep. I rubbed her back and held her and said, “No. No.” “Please Mommy! Please, I’m begging you mommy, take it out! Take it out Mommy please!” Our two faces facing each other each, red and puffy, streaming tears. “No, Allistaire, I will not take it out. We are going to give it a try and see if it will help you feel better.” Relentless were her pleas. Inside my heart was tormented, hating to see her so afraid, so angry, so desperate, so insistent that I help her and knowing that in my love for her, I would have to hold strong, denying her the very good that consumed her mind. The only good that seemed good to her was that tube coming out of her nose and throat. In that frenzied moment she could not imagine the relief she would soon feel. But oh how my heart hurt for her. What brutality to see your beloved hurting and to know you put them in that position and though you could end their pain, you will not for the very reason that you love them and you are in a better position to know what’s best for them.

In the midst of her rage, her agonized begging, her quaking little body, sitting on my lap, I, her mother, the flesh that bore her, my being overlapped with hers, my heart swelling and leaking out around me with pain because of her pain, sorrow for her sorrow, the Lord whispered into my heart a clear and quiet and sweet tender truth, a barely audible love song: “This is how I love you Jai. You rage in fury. You demand Me to make it stop. You scream. Your heart breaks because of the terror, the pain – it swamps you and it is all you can see. You beg Me to make it stop. You plead, Father make it stop, make it stop. And I have not. I have not stopped the onslaught. You feel your very flesh being flayed open and you beg me to see you and to stop this horror. I see you my child and I love you. I will not turn away. And though you do not understand, and though it feels like cruelty to you, like abandonment, there is a reality and future you cannot see – a sweeping truth that far exceeds your terror that in the expanse of time will be a vapor. Not only will your all-consuming sorrow pass in a heartbeat, but it dwells beautifully interwoven into staggeringly glorious brightness – a story, a reality, a magnificence, a good beyond any good.” And as He whispered into my heart, I knew just as clearly that He weeps over my weeping. While He has chosen to allow this brutal path, He grieves with me and for me. His heart heaves and tears open.

In that moment, beyond all other moments, I felt the love of my Father. I could sense the thudding of His heart, the heaviness of His tears, the gripping of His arms around me as we wept together over this brutal tragic broken world where children die agonizing deaths, where beautiful, wild, intoxicatingly amazing creation lies broken. And not just sorrow in the abstract, brokenness in general, but this pain, this brokenness, this threatening death, this little blue-eyed girl at the center of so many who love her. And somehow I have now come to trust more than ever before, that though He does not raise His hand to stop what feels only like death and cruelty, it is His very love that holds back His hand. He has not turned away from me, from this ragged awful scene in Forest A Level 8 room 301 in Seattle in the year 2015 to a little girl named Allistaire and her family. He weeps with me. He does not act in the way I desperately want, not because He incapable, nor because He is cruel, but because His love and His good exceeds my comprehension, surpasses my finite flesh.

Allistaire’s Flow Cytometry results came back from her bone marrow biopsy on Tuesday. She has 5-6% leukemia in her marrow. This is the first time her marrow has not been clear since last October. The leukemia makes its vicious presence known, pressing behind her right eye. I can only imagine the infiltration the PET/CT will eventually show. We must act rapidly. Dr. Cooper comes to talk with me. What do I want to do. I told him the day before that I wanted to do Mylotarg again – it had a dramatic effect on her chloromas. But now we know it’s in her marrow too. “Is this a ‘quality of life’ conversation?” I ask him. “No, this is not a quality of life conversation. Well, maybe it is. Social work said you asked about hospice.” I tell him that, yes, in July when we first knew of the chloroma in her sinus cavity I feared Allistaire would die this summer. I honestly had little hope for the Mylotarg to be effective. But then it was. No. No. I do not want to stop trying. We have a goal. We march, rather we trudge, forward in hopes of her heart eventually recovering enough to endure a second transplant, her only hope for to cure her AML. The T-cells were ineffective to stop the progression of her disease. There is still pneumonia in her lungs. This upcoming chemo will once again suppress her marrow and wipe out her immune fighting cells, leaving her open to more infection. But what is the alternative? Doing nothing? Doing only something minimal that we know will only slightly slow impending death? I ask Dr. Cooper how may children in Allistaire’s situation have you seen make it? His shakes his head, “Maybe one.”

At lunch I sat at a restaurant reading, while Allistaire’s fantastic volunteer from Side-By-Side , Kaley, attempted to play with her at the hospital. I’m reading Sue Monk Kidd’s novel, “The Invention of Wings.” It is set on a plantation in Charleston, South Carolina in the early 1800’s. One of the slaves has just been told she will be sold off. She, the slave, is “staring at Phoebe. A daughter she’d never see again.” The words exploded pain in my heart. I gulped air, my shoulders crumbled in sobs. With head bent low, I covered my face with my hands and hot tears just spilled over, overfilling the deep well of my flesh, that dark warm cave where my spirit dwells. She is just a character. The story just a story. But she isn’t. She is as real as my shaking hands and swollen eyelids. She is countless women who have lost their child. She is the great-grandmother of people I pass on the street, in the hall, in the grocery store. Her’s is a story of loss, of overwhelming sorrow, of brutality. She is and I are bound by this unique pain of staring at child we may never see again.

Earlier in the morning I was reminded of the story of Jesus standing before the tomb of Lazarus. The Bible says, “Jesus wept.” Why? What did He weep for? He knew that Lazarus was sick, “unto death,” and he tarried. He did not intervene. He allowed Lazarus to die. And as He stood there weeping He knew that He would raise Lasurus from the dead. So what was the source of His sorrow? For what did the God of the Universe weep? I wonder if He wept because His heart broke over the brokenness of this world, over the wrenching, severing pain of sickness and death. I wonder if He wept because His heart inclined to ours and He felt in that moment the immensity of our sorrow, we finite beings broken and weeping.

In that moment I read the words of a slave woman who would never again see her daughter, I knew that it is not enough to love one another from a distance. No, and at this my whole body shook with grief, we must come in close, we must enter into the very same spaces of pain that do those we seek to love.

As a teenager, zealous with sincere love for the Lord, I knew that He asked two things of me – that I love Him above all else, and that I love others as myself. I saw that in a very direct way, a love for Him would manifest itself in love for others. My love for others would be clear evidence of my love for Him. For that is the sort of God He is. He is a God who said that to love is to lay down your life for another. I cannot claim to love God and not love others. I thought I wanted to be a doctor. I saw that Christ always met people’s tangible needs before telling them of their spiritual need for a relationship with Him. He gave them food, He bound up wounds and brought sight to the blind. I thought this – this is what I can do to love – I can bind up wounds, I can care for the sick. At some point in my college years I opted to switch to social work, seeing yet another, and perhaps more direct route to coming close to people in need. I wanted to care for the sick, the orphan, the widow, the prisoner.

But, though I did not consciously think of it this way, this is a bit of a top down approach. I was not planning on being sick. I did not want to be poor or widowed or orphaned. I did not want to be weak and in need. I did not want to be of little worth in the eyes of the world. I did not want to be someone whose sight brought pity and cringing. No, I wanted to be ever so grateful for all the good and bounty given unto me and out of this abundance, give to others. This is how I planned to love and fulfill God’s command to love others. It gave me a warm sense of satisfaction. Oh I could have pursued some money-making profession, but rather, I had chosen to be down here with the broken. I had a lovely little plan of how my life would bring glory to God and I was sure He was pleased as well.

And then came His sickle and He slashed at all my beautiful plans and my beautiful life and it scattered and bled out with me bewildered. Once upon a time, the God of heaven sent manna down to earth to be nourishment for His people. And then came Jesus, Christ, Emmanuel – God with us. God with us. God came down to dwell with man. He came down. He came down and lived on dirty roads and endured hardship and betrayal and mockery and sorrow and ultimately death. It was Christ’s hand that gave the bread, that put mud in the blind man’s eyes to give sight, His hand that touched the leprosy. This is the love of God – a God who was not content to stay far off in His glorious heights of heaven but came down low to dwell with men, that He might be not just a God of truth and beauty and power, and not even just a God of love, but see this – a God of compassion – a God who weeps. And as I read those words that bound me to that black slave woman hundreds of years ago, I thanked God for this thinnest thread, this meager connection to her pain, to coming close to her, to hearing the weeping thud of her heart. The sobs that silently racked my body were not only for Allistaire, but for seeing that the way God has asked me to love is the way that He has loved, to dwell in the same spaces of pain and reality as those who also need His comfort. Truest love cannot love from afar. It must come in close and the only real way to come close is to sit side by side just as Christ hung between two others bound to crosses.

This is the closest I’ve come to knowing what it is to share in the sufferings of Christ. The closest I’ve come to taking up my cross. It is so much less noble than I would have liked. It is gritty and brutal and the road to the horizon seems to go on and on. Who am I Lord? I am no one. I am just one girl, one person in the vast history of humanity, one of billions and billions, a vapor, a mist, a blink of the eye. And yet, as His arms encircle me, and He says No to my pleas to make it stop, I know that He is weeping with me and never have I been so confident of not just His goodness, but His love, His love. And I pray, Lord, use this one frail broken life to sit with another who weeps, that they might know my love and in turn know Your compassionate love. This is your way. I wish there were another. I wish it didn’t have to hurt so bad. But the pain speaks of the depth and breadth of the brokenness and I know you have not come only to weep with us, but also to mend, to make right, to redeem the loss, to wipe away at long last every tear. Come swiftly Lord and tarry only that more might turn and be enveloped by You.

The Death of Lazarus – John 11
11 Now a man named Lazarus was sick. He was from Bethany, the village of Mary and her sister Martha. 2 (This Mary, whose brother Lazarus now lay sick, was the same one who poured perfume on the Lord and wiped his feet with her hair.) 3 So the sisters sent word to Jesus, “Lord, the one you love is sick.”

4 When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” 5 Now Jesus loved Martha and her sister and Lazarus. 6 So when he heard that Lazarus was sick, he stayed where he was two more days, 7 and then he said to his disciples, “Let us go back to Judea.”

8 “But Rabbi,” they said, “a short while ago the Jews there tried to stone you, and yet you are going back?”

9 Jesus answered, “Are there not twelve hours of daylight? Anyone who walks in the daytime will not stumble, for they see by this world’s light. 10 It is when a person walks at night that they stumble, for they have no light.”

11 After he had said this, he went on to tell them, “Our friend Lazarus has fallen asleep; but I am going there to wake him up.”

12 His disciples replied, “Lord, if he sleeps, he will get better.” 13 Jesus had been speaking of his death, but his disciples thought he meant natural sleep.

14 So then he told them plainly, “Lazarus is dead, 15 and for your sake I am glad I was not there, so that you may believe. But let us go to him.”

16 Then Thomas (also known as Didymus[a]) said to the rest of the disciples, “Let us also go, that we may die with him.”

Jesus Comforts the Sisters of Lazarus
17 On his arrival, Jesus found that Lazarus had already been in the tomb for four days. 18 Now Bethany was less than two miles[b] from Jerusalem, 19 and many Jews had come to Martha and Mary to comfort them in the loss of their brother. 20 When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.

21 “Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. 22 But I know that even now God will give you whatever you ask.”

23 Jesus said to her, “Your brother will rise again.”

24 Martha answered, “I know he will rise again in the resurrection at the last day.”

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

27 “Yes, Lord,” she replied, “I believe that you are the Messiah, the Son of God, who is to come into the world.”

28 After she had said this, she went back and called her sister Mary aside. “The Teacher is here,” she said, “and is asking for you.” 29 When Mary heard this, she got up quickly and went to him. 30 Now Jesus had not yet entered the village, but was still at the place where Martha had met him. 31 When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.

32 When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.”

33 When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34 “Where have you laid him?” he asked.

“Come and see, Lord,” they replied.

35 Jesus wept.

36 Then the Jews said, “See how he loved him!”

37 But some of them said, “Could not he who opened the eyes of the blind man have kept this man from dying?”

Jesus Raises Lazarus From the Dead
38 Jesus, once more deeply moved, came to the tomb. It was a cave with a stone laid across the entrance. 39 “Take away the stone,” he said.

“But, Lord,” said Martha, the sister of the dead man, “by this time there is a bad odor, for he has been there four days.”

40 Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”

41 So they took away the stone. Then Jesus looked up and said, “Father, I thank you that you have heard me. 42 I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me.”

43 When he had said this, Jesus called in a loud voice, “Lazarus, come out!” 44 The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face.

Jesus said to them, “Take off the grave clothes and let him go.”

Aug26

APPROVED!!!!!

Posted on August 26, 2015 by Conglomeration of Joy

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Four years ago we could never have imagined this little girl connected to genetically modified T-cells but I just got word that the IRB did approve her to move forward with the WT1 trial and get her T-cells!!!! I have no more info at this point but know that they are trying to plan it for next week though this Friday is also a slim possibility. Her ANC today was 832. Platelets are still low requiring a transfusion last Saturday. Thank you for all of your encouragement and prayers!

Thank you God for another open door, a massive thick, seemingly immovable door!

Aug21

Denial

Posted on August 21, 2015 by Conglomeration of Joy

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My eyes blink and blink, looking around, trying to clear my vision. Chest compressed and struggling for breath, the wind knocked out, a severe blow. No words form on my tongue, just desperate to get air. When I walked up to the door I expected it to open and be welcomed in, feeling a bit giddy. The next moment the fist connects with my jaw, so hard and fast I hardly feel pain. I find myself crumbled on the floor, all the strength drained from my legs, hands shaky. It’s taking a while to even want to get up, to even test my ability to rise.

Everything was set, down to the small details, two beds in the room or a crib and a bed? We were to go to SCCA (Seattle Cancer Care Alliance) Thursday morning at 8am. Dr. Wolfrey, one of the BMT (Bone Marrow Transplant) docs would examine Allistaire and labs would be drawn as outlined by the trial protocol. We would then return to Seattle Children’s for Allistaire’s scheduled dose of IV anti fungal. Around noon, the research study nurse would arrive with Allistaire’s genetically modified T-cells that took six weeks to create. By 1pm the two-hour infusion would begin and she would be monitored very closely. Once the infusion was complete, we would transfer across the hall to the CRC (Clinical Research Center) where we would stay overnight until 8am when Dr. Wolfrey would again examine her and determine if she could be discharged.

Many times Wednesday morning, as we spent a few hours in clinic getting her anti fungal infusion, various staff popped by to share the excitement for the T-cells scheduled the next day. Congratulations all around. Nurses near and dear to us, each saying they wish they could be our nurse on Thursday to give the infusion. I saw Dr. Cooper in the hall, knowing he probably didn’t want me harassing him to find out if he’d heard the decision from the IRB (Internal Review Board), but I couldn’t help myself. N0 he hadn’t heard, but they won’t say No he said. Mid-morning the research study nurse called to say that the IRB would meet that afternoon and she would call me probably after hours with their decision. So nerve-wracking. I’ve come to trust nothing until it actually happens, so very many times we have been disappointed and forced to cancel plans. But still, it all sounded like a simple formality.

Everything was moving forward. I comforted myself with the reminders that Allistaire’s situation was vastly improved since Dr. Egan first proposed going to the IRB to ask for exceptions. Her ileus had fully resolved and as of Monday, she was completely off TPN (IV nutrition). Her echocardiogram on Friday produced an ejection fraction of 41, one point over the needed threshold. That meant the two big “Grade 3 Toxicities,” were gone, irrelevant. Really the only remaining issue is her lack of count recovery. The protocol dictates that if there is no leukemia present (specifically in the marrow) then the patient must have an ANC of 1,000 and platelet count of 50. If there is leukemia present, then the thresholds are an ANC of 500 and platelet count of 30. A marrow that has leukemia present is less able to produce the healthy blood cells. In Allistaire’s case, both the Flow Cytometry and FISH tests showed no evidence of leukemia in her marrow. She still has leukemia as evidenced by her remaining chloromas but nothing shows up in her marrow. Allistaire’s cancer cells show characteristics of both M5 and M7 AML. M5 is known to be associated with chloromas and M7 is “associated with marrow fibrosis due to megakaryoblast secretion of fibrogenic cytokines.” What this means is that the landscape of Allistaire’s marrow has been permanently changed due to secretions by cancer cells that have created a web like structure in her marrow which in turn makes it harder for the blood cells of her marrow to recover. Not only has her marrow been long battered by the effects of so much chemo (21 rounds of chemo each containing 2-4 different types of chemo), but her cancer cells themselves leave behind their wretched imprint. So…the point is, Allistaire’s marrow is very slow to recover and the time that it takes to reach these count thresholds required by the trial also means a whole lot of time for her cancer cells in the rest of her body to continue to divide and increase.

We are in a hard place. Giving Allistaire’s marrow time to recover counts so she can qualify for the trial allows the rest of her disease lots of opportunity to increase which makes this T-cell therapy far less effective. Any future chemo that is intense enough to keep her cancer at bay will also suppress her counts. Less intense chemo won’t suppress her counts as much but more than likely will not stop her cancer. We are in this wretched cycle that seems to repeat endlessly and to have no way out.

As the day turned toward evening, the waiting intensified like a very taut thread. I called out to God, reminding Him that I am made of but dust, I am a vapor, a mist, a spider web, a flower in the field soon to fade. I called out for mercy, mercy Lord.

A little after 6pm, Dr. Egan called. “I am so sorry Jai.” I tried to listen. I tried to hear what he was saying. Like garbled words I could not make sense of what I was being told. The IRB denied the request for exemptions. “What did you ask for?” I pleaded. The IRB just gave an answer of, “No,” for now and will provide a letter of explanation on Monday. Did Dr. Egan ask for too much? Were his requests too broad? It seemed from what I heard that he asked for exceptions that would apply to all patients going forward. Who are these folks who make up the IRB? I want them to see Allistaire’s face. I want them to see her dance, hear her laugh. Yes, yes I know that all these numbers about her matter, they too are truth, real, but they are not the whole story, the full picture. Look at MY CHILD!!! But you see, this is the hard part about cancer research. This is research, this is not a standard therapy. This is an experiment in its truest form. The first commitment of a doctor is to “do no harm.” Harm? Wow does this feel subjective! I mean I’m pretty sure death is harm. Chemo is harm. Surgery is harm. Radiation is harm. Harm. Harm. Everywhere harm. But wouldn’t I cry out for it again and again if I thought harm might make a way through for life?

But you know, I do understand. I do respect this mandate to do no harm. I respect that it causes a doctor, a researcher to pause, to carefully consider. The hard thing is we’re working in the world of unknowns – we don’t know if these T-cells will work, we don’t know what harm they may also cause. It is ever so important that this trial be carefully designed and carried out. The whole point of a Phase I trial is to determine if it is safe – if there aren’t toxicities that result from this therapy that negate its potential value. Once it is determined to be safe with relatively low risk, the next phase of research looks at efficacy. There was actually a T-cell trial that used a different type of virus to alter the DNA within the T-cell that ended up causing ALL (Acute Lymphoblastic Leukemia). That trial was shut down because folks trying to have their cancer cured actually got cancer directly from the experimental therapy. It is not reasonable to ask or expect the IRB to sweep aside all concern because we are desperate for Allistaire. While I hope they will consider her as an individual I also understand that the point of this trial is for the benefit of anyone with relapsed AML, child or adult. I do not want to stand in the way of carefully conducted science. If you read the fabulous book, The Emperor of All Maladies, you will learn how the “radical masectomy,” became the standard treatment for breast cancer between about 1895 and the mid 1970’s, ravaging and brutalizing women’s bodies it turns out without benefit. It took a serious clinical trial to show that theories about how cancer metastasized that had been taken for granted as truth, were in fact false, only after thousands of women endured horrific, disfiguring surgeries.

I should also mention, Dr. Cooper was fairly awed that Fred Hutch is even willing to open this trial to children. It is precisely because Allistaire is a child, the very first child in fact, to ever attempt this therapy that the IRB wants to tread with such great caution. “Because no one wants to see a kid die?” I ask Dr. Cooper. Basically that’s it. Everyone has a much harder time seeing a kid hurt, even die, harder than seeing a 75-year-old person with AML and has had the chance to live. The thing is, if kids die, a trial is more likely to be shut down. This is a problem – for everyone. Far fewer kids get cancer than adults so it is not financially lucrative for a pharmaceutical company to trial a drug that might work against a childhood cancer until it’s been proven to work in an adult cancer. Adult cancers are what bring in the money. Kids are a financial liability. The irony is that the bodies of children have a far better shot at enduring the toxicities of a drug that would kill an adult. Here is a statistic worth pondering: “The average age of a cancer diagnosis for an adult is 67 years old, equating to an average of 15 years of life lost to cancer in contrast to the average age of a cancer diagnosis for a child which is 6 years old, equating to an average 71 years of life lost to cancer.” The National Cancer Institute only allots 4% of its budget to pediatric cancer research and it is not a money-maker for pharmaceutical companies. Who’s going to pave a way forward for kids with cancer? I am so thankful to Fred Hutch for being working so hard to open this door for kids with AML. I am also thankful for organizations like The Ben Towne Foundation, St. Baldrick’s and Cure Search that raise funds specifically to accelerate cures for childhood cancers.

This denial has been a severe blow to my heart. Having everything set up with the expectation that we would move forward with the T-cell infusion, only to be told No at the last moment has been extremely emotionally shocking. I have felt quiet these last few days, not really interested in hearing what people have to say or saying much myself. While it would be nice to believe, as some do, that because God has brought Allistaire so far, He will continue to open the door for her, I don’t hold to that idea. I fully believe He is able, gosh I really believe that guy, God, if He really is God, it’s simply not hard for Him to make a way forward for Allistaire. I mean, I’m pretty sure if he designed atoms and stars and the DNA double-helix and orangutans and sunsets glinting off snowy peaks and oceans deep teeming with wild sea life – I know He is able. He is able!!! The thing is I equally believe with my whole heart, with every fiber of my being that He is other, He is infinite and my finite mind cannot begin to fathom what He is up to, because one thing I know, is that this whole crazy seeming mess is about more than Allistaire and her one little precious life. This is about more than me loving my daughter desperately and wanting to know her all the rest of my life. I’m telling you, it had better be about more, because there are times when death seems like grace, an end to this struggle.

What’s rocked me is seeing how God resolved her ileus just in time and increased her heart function to just enough to qualify for the trial. It seemed He was opening doors. And they are open doors still. But then wow, the door slammed right in our face, a very hard blow. A friend told me she wants to study God’s promises. This is a crucial question – what does God actually promise? What are the strongholds which God declares I can grab onto? It is imperative that I reach for what will really hold. I texted my Seattle pastor this morning saying I need help. I feel I am in a storm which threatens to tear me limb from limb. Later I saw that back home in Bozeman, my pastor Bryan will be teaching on the book of Job. He says, “The book of Job is a storm. At the beginning of the story, storms strike Job’s house. At the end of the story, God himself speaks out of the storm. In between, chaos and darkness reign.” Who am I to liken myself to the righteous man Job? What I want, truly, more than anything is that God would delight to use my life to illuminate His life-giving beauty. But oh man, do you know what happened to His Son? God the Father allowed His son to be crucified for the salvation of the world, that all might receive eternal life through Christ. And Jesus yielded to the Father, “for the joy set before Him.” I am far, far too frail and finite to endure. I am in desperate need of my Father to hold me up. Hold me up Lord.

From my youth, my brain has been a brain that never ceases roving, roving, searching. In 10th grade when I took computer science, I would go to sleep contemplating algorithms, sometimes waking with the solution. It’s not always handy. Often I wish I could shut it off. My mind has circled high and low, over and over this predicament, inquiring of every angle, searching for a crack, a path through, like water through rock. Thankfully Allistaire has one seriously awesome doctor and one that treats me with respect, who allows and invites me to be a part of this problem solving endeavor. Both Thursday morning and this morning, Dr. Cooper and I were able to discuss the situation, what is known and unknown, what sort of “strategerie,” might be best. As of this morning Dr. Cooper was able to hear from Dr. Egan who had in turn been able to talk to one of the members of the IRB. This person recommended Dr. Egan resubmit his request. It seems that the IRB’s perception of the requests were for quite wide sweeping exceptions that would pretty substantially change the protocol and might even require FDA approval. I know that he asked for exceptions regarding Grade 3 Toxicities in general. At this point, to our best knowledge, Allistaire does not have any issues that count as Grade 3 Toxicities which would negate the need to even bring up anything related to Grade 3 Toxicities. Really she just has low blood counts. Tomorrow she will get another set of labs and I am so hoping her ANC and platelets might be on the rise. Dr. Egan will resubmit today or Monday, though the IRB will not meet again until next Wednesday. This may be our last shot for Allistaire to get her T-cells.

I will not shake my fist at God. I don’t understand. His plans baffle me. Though I do not see, I will bank all my heart on Him. I will thank Him for all His bounty. I will put my hope in His redeeming ways, in the mystery of the ugly-beautiful. I lay flat at His feet and ask simply, Father, do not abandon me. Be faithful to your promises. May your mercies be new every morning.

“The wrinkled man in the wheelchair with the legs wrapped, the girl with her face punctured deep with the teeth marks of a dog, the mess of the world, and I see – this, all this, is what the French call d’un beau affreux, what the Germans call hubsch-hasslich – the ugly-beautiful. That which is perceived as ugly transfigures into beautiful. What the postimpressionist painter Paul Gauguin expressed as ‘Le laid peut etre beau’ – The ugly can be beautiful. The dark can give birth to life; suffering can deliver grace.” Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You Are

Aug14

Long Shot

Posted on August 14, 2015 by Conglomeration of Joy

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I slow the car heading down the hill on 65th, allowing a mom and her two children to cross the road. Blonde curls bounced and flounced as the little girl, about two, followed her mom casting glances back at me. Without intention my brain delivered up the thought, “maybe that’s what Allistaire would have looked like, alive, out thriving in the world, hair growing toward shoulders.” Immediately I slam the gate close and fix my attention on getting back to the hospital in time for the end of Allistaire’s nap.

It felt as if Monday was a day of dividing, a narrowing once again of the path, splitting the road down into two opposing directions. The morning began with the news that the cardiac anesthesiologist may have to use Milrinone during the sedation which would mean recovery in the ICU and a hoped for wean back off Milrinone. Both words “ICU” and “Milrinone” evoke heavy, deep terror. Ugh. Okay. Okay. Acclimate. Accept. New norm. The bigger issue though was what the results of the Brain MRI, PET/CT and bone marrow test would reveal. Again there was the impending sense of coming down to the end of things. Yet in the midst of this, strange rest to accept what would come.

For three long hours Sten and I sat out on the patio outside of Starbucks, waiting for the pager to alert us that the time had come to take the next step forward on this journey. The cardiac anesthesiologist was pleased with how the sedation had gone and had indeed used a combination of Dopamine and Milrinone to keep Allistaire’s blood pressure from spiraling down. She was recovering in the ICU with the plan to cut the Milrinone dose by half in 6 hours and off completely in another 6. Allistaire herself was still coming out of the effects of anesthesia and was in the angry phase, yelling bitterly “It’s not fair. I hate it here. I want to be in my regular room.” She beat her fists on the bed and slammed Doggie down over and over. Such strange words to hear from her, evidence that Allistaire is growing up, no longer a naive little child but starting to sense a yearning for justice and rightness in the world. It hurt my heart.

As soon as it was clear Allistaire was fine, my attention was powerfully pulled to the fact that it had been hours since the end of the PET/CT and surely by now someone somewhere must know something of what was happening inside Allistaire’s flesh. I asked the ICU nurse to page Dr. Leger, the attending oncologist, asking for results. She’d be right down. My heart began to pound, standing on that ledge overwhelmed by the vast sense of deep space in which I may be about to fall. The news was good. The news was bad. “Her cancer looks better,” she said. Relief but not nearly enough. The PET measures the metabolic activity of the areas of cancer with a unit of measurement called SUV (Standard Uptake Values). The body is deprived of sugar for about 12 hours before the scan and then an injection of glucose is allowed to circulate the body for an hour before the scan is taken. The more metabolically active, the brighter the area of the body on the scan. Results less than 3 and even more so less than 2 are considered to most likely be non-cancerous. All of the chloromas (leukemic tumors) in Allistaire’s body had reduced to less than a value of 2 with the exception of one spot which was 2.3. The mass in Allistaire’s sinus had reduced to about 6 which is till quite “avid” as they say. So while it is great that Allistaire had a good response to the chemo/antibody, would it be enough to move forward? What would forward mean?

The bad news was that there was also a patch of pneumonia on her lower right lobe of her lung. An active infection. While Allistaire has had absolutely no respiratory symptoms nor fevers, we all assumed an active infection was yet another slammed door to proceeding with the T-cells. In the past week it had come to light that Allistaire’s cardiac function was also too poor to qualify for the WT1 trial. Apparently deep in the details of the protocol was the requirement of an ejection fraction over 40, a currently impossible bar and one that could take months and months to achieve if ever it could. The problems just kept piling up, seeming to bar the way forward with the T-cells: poor cardiac function, active infection, Grade 3 toxicity due to ileus in addition to a lack of count (Neutrophil and platelet) recovery we had always known would be an issue. With the door to T-cells closed the only option would be more chemo but there’s no way to give her more chemo right now with an active infection brewing. Giving more chemo would just suppress her white blood cells all over again and allow the pneumonia to take over. She would need time for her body’s recovering immune system to fight the infection which also meant time for the cancer to grow back and spread. Everywhere my mind turned felt like slammed doors. Sten and I pressed our bodies together in long silent hugs, my legs weak underneath me, threatening to give way.

I went to sleep crying. I woke twice to dreams of being chased, hunted down. I woke for long hours in the early morning, hot tears and the slow realization that we might just really be done. We might need to take her home soon. Oh sure, it wouldn’t be right away. They wouldn’t kick us out while she has an ileus and an infection. They won’t just let her starve to death or intentionally let an infection overtake her. No, I knew they would continue to treat these issues. Home would only be an option once these were past. And for the first time, “quality of life,” was a term I was willing to hold in the forefront of my mind. Maybe “going down in flames,” wasn’t the only option. Maybe it would be better to let it happen slowly.

“Oh Lord, oh God, have mercy! Look down on these woes and make a way through, please Father.” I called out to the Lord intent on yielding to His Godhood – His ways being beyond my comprehension, but still calling out for mercy. The Israelites came to mind, pinned between the onslaught of the Egyptians and that vast body of the Red Sea. There was nowhere to turn, no seeming avenue of escape. And then the Lord did the incomprehensible. He parted the waters of the sea and they walked through on dry land. “Father, part the waters, make a way through,” I cried out.

JoMarie, Solveig and Jo drove away Tuesday morning. When it became clear that nothing big would be discussed that day or in the next few, Sten and I packed up the Suburban and I watched him drive away. Always the question hangs of what life will look like the next time we are together.

I returned to the hospital and found a very upset Allistaire in her room. She was so sad to have Daddy leave and her tummy was really hurting and the pain medicine didn’t seem to help. Nevertheless we would get up and make our loops around the Unit. Dr. Leger came toward us and slipped a paper in my hand – the Flow Cytometry results. No detectable cancer in her marrow. So great but still my heart slumped knowing the victory over cancer might still be defeated by these wretched side-effects of the very treatment that was actually succeeding at doing away with her cancer cells. Wouldn’t it be amazing if we found treatments for cancer that only killed the cancer cells? Wouldn’t it be phenomenal if we didn’t have to poison the kidneys and liver, kill muscle cells in the heart, destroy brain cells, crush hopes of future children by annihilating ovaries? What is just so blasted frustrating is that there really are treatments that might be able to cure Allistaire from cancer but the very treatment has been so ravaging that she is barred from the final blow to her cancer. The thought that there is a possible amazing treatment within hand’s reach but may never be attainable because chemo tore her heart, shocked the nerves of her gut to stop working, wiped out the white blood cells that could have defended her against pneumonia and battered her marrow so relentlessly that her life-giving blood cells can hardly rise back up – well it’s simply intolerable, maddening, staggeringly sad.

Dr. Leger told me she would be by shortly to talk with me. She told me that she’d finally had the chance to sit down with the radiologist and carefully go over all the images. The mass in her sinus, while still metabolically active as cancer, was actually substantially reduced in size! So wonderful. And then, I could not believe my ears, shook my head in wondrous disbelief. “If nothing gets worse, Dr. Egan plans to go to the IRB on Monday and ask for exceptions to be made for Allistaire. He’s hoping for a 48 hour turn around and plans to infuse the T-cells on Thursday.” WHAT???? Apparently Dr. Egan is optimistic that the IRB (Internal Review Board) will approve the exceptions he is asking for on Allistaire’s behalf and expects to have approval in time to give her the T-cells on Thursday. Wide eyes and jaw dropped in shock and smile. Apparently the protocol does not count an active infection as an exclusion so her pneumonia will not exclude her. Even so, she has no symptoms, is being treated with both powerful antibiotics and antifungal drugs and has a rising neutrophil count to rid her of the infection. But he will be asking for exclusions for her poor cardiac function, lack of sufficient count recovery and the Grade 3 Toxicity resulting from the ileus and thus need for TPN. I just can hardly take it in. Monday evening I was practically begging for those T-cells, those cells made just for Allistaire, those cells that may be her last hope, perhaps insufficient to cure, but maybe just to buy her some time for at least more life and maybe for the next step in treatment.

It’s a long shot. But then again, I look back not just over months but years and I see God’s hand toppling walls, making a way through when there seemed none, holding cancer at bay when it seemed unstoppable, orchestrating so very many circumstances to care for my child. So many seeming closed doors have been opened. Man, I have no clue what the future holds. This crazy life has shown me over and over that you don’t even know how life can change in a flash from morning to night. I am humbled by God’s gracious hand and I am humbled by the relentless hearts of these doctors who do not stop working to try to figure out how they can help Allistaire. They rewrote the protocol for this trial last fall to reduce the weight requirement in order to allow young children like Allistaire to have access to these cells. Dr. Egan went through an extensive process to make it possible for children to actually be given the infusion of cells at Seattle Children’s as before it was only set up for adults to get them at the University of Washington. Dr. Cooper and Dr. Egan have sent so many emails and had so many conversations trying to strategize on how to open the way for Allistaire. Even on his vacation, Dr. Cooper has continued to ponder how to care for my sweet girl. Dr. Leger, the attending doctor, is working in collaboration with Dr. Law and the rest of the heart failure team trying to get Allistaire’s heart in the best possible place. She connects with the GI team to consider how we might bring about an end of this ileus and converses with the Infectious Disease folks on what to do about her pneumonia. And then there is our sweet Dr. Tarlock, the very first oncologist we ever encountered, she’s always there in the backdrop, coordinating the details, asking questions, probing for answers. There are the scores and scores of nurses who draw labs, carefully entering Allistaire’s line many times every day, every time an opportunity for infection. They put up her meds on the pumps and listen to her little heart, listen for bowel tones, feels for pulses and warmth of extremities. The CNAs change linens, bring the scale to get her daily weight, weigh diapers and measure throw up all so we can track her fluid intake and output. They come every four hours to check her blood pressure, temperature and oxygen saturation. Mohammed and Bonnie are just two of the folks who clean our room and tediously clean the floors, all to rid the Unit of dangers like viruses and bacteria. Residents like Whitney comb the details of the plan of care, putting in orders, looking for and interpreting test results. Pharmacists problem solve medication interactions, proper dosing and work with the nutritionists to get just the right combination of electrolytes in her TPN. Amazing radiologists read scans and radiology techs like our dear Jamie make getting a CT fun and produce a good image. Dr. Geiduscheck, the cardiac anesthesiologist, carefully reviews Allistaire’s previous sedations and considers a plan and a backup plan to get her through these long scans and bone marrow test. The pathologist look down at her marrow through the microscope, arrange the Flow Cytometry test and her chromosomes to use FISH probes to look for her MLL mutation. Sweet Melissa arrives with a wheelchair to transport us from place to place on days with procedures and scans. There’s also Rosalie the Art Therpaist, Betsie the Music Therapist, Karen and Jeremey on the PAC (Pediatric Advanced Care) Team, Fred and Megan our social workers, and Carrie our Financial Counselor. This is a crazy long list and I know I am leaving out so many folks whose efforts God has used to sustain Allistaire’s life. I am gloriously indebted to so many wonderful people, people who don’t just do their job well, but whose hearts and voices cheer us on, wanting and hoping for the best, for a way through.

Today Allistaire was bright, full of joy, dancing in her bed. She had a little smear of poop in her diaper last night. I told her we would have a Poop Party when she finally started pooping again. She told me with the most gleeful voice, “Mommy, I had gas!” Yay! What wonderful things! Callie, the child life specialist came yesterday and played Model Magic with Allistaire much to Allistaire’s great joy. Today Sierra, the creative writing lady, came to listen to Allistaire tell stories and record them on paper. Somedays I just feel so overwhelmed with how good our life really is, because it really is just SO full! It is so radically different from my vision of what I would choose but the truth is it is simply bursting with wonderful people.

It’s a crazy long shot, these T-cells. Who knows? They may utterly fail and the end may soon come. But I choose to link fear to wonder, terror to hope, threat of death to a God who overcame death. There was an Obliteride team with cool blue jerseys, Adaptive Biotechnologies. I had to look them up. Turns out they do really cool stuff (I’ll include a video below) and started around a cafeteria table at Fred Hutch. In my search through their website I came upon a video which is the most helpful tool I have found yet to understanding these T-cells that are Allistaire’s hope. Watch the video. Don’t skip it. It is worth every second of your time. Let your mind be blown, your smile be broad, as you ponder the magnificent intricacies of your flesh, of actions being taken on your behalf a hundred thousand times a day without you even having to ask. My face could not contain the bursting smile of my heart as I witnessed just one wee bit of God’s gorgeous creation. The T-cells declare the wonder of my God, His wild beauty, His grace toward us. I choose to link my terror of Allistaire’s death with this God who makes the T-cell. I choose to yield to Him. I choose to worship the God of my immune system as the God who gets to choose the path of my life, who chooses Allistaire’s path. Not only do the sweep of stars above proclaim His glory, but so too here, deep within us, mysteries, wonders, lifetimes worth of exploration and they will continue to elude and excite with their complexity.

(Quick update: as of last night Allistaire had numerous toots and seven poopy diapers! She ate an entire bag of popcorn yesterday and has had no pain in her tummy for a day, no pain meds for almost 24 hours and hasn’t thrown up since Wednesday morning. It looks like this ileus may be over and just the need for a slow acclimation back to food and wean off TPN before us!!!!!)

Amazing video on How T-cells Work

Cool video on the Adaptive Immune System and technological advances to understand and harness it!

Jun24

Wednesday…come and gone

Posted on June 24, 2015 by Conglomeration of Joy

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Maple frosting flakes off my scone onto the table top. I pick up each little tidbit, placing its happy sweetness in my mouth, the sun reflecting in the warm gold of the table’s wood grain. Even as my fingers grasp the delicate skin of sugar my mind contorts asking if it’s really a good idea to just pick something up off of a table and put it in my mouth, I mean you do realize you’re putting whatever is on that table straight into your mouth. You don’t know what’s on that table. You’re flirting with danger. That’s not a good idea for Allistaire, you could get sick. In defiance or fatigue I eat the frosting, licking my fingers. Maybe I fixate on the warmth of my latte and this maple pecan scone because I am procrastinating setting my fingers to this keyboard. Maybe I eat sweet decadence and feel the satisfying warmth of coffee down my throat because it feels like caring for myself, feels like the tender bandaging of wounds, of soft humming over tears.

The sun flickers through the heart-shaped leaves of the Katsura tree outside the window. Why when I had a bit of time this afternoon after my meeting, did I head into the heart of the city and pay for parking, all to go into Anthropologie? Am I materialistic? Yes, yes I am and I wrestle it. But too, Anthropologie is a feast for the eyes, groupings of color and pattern, of plant life, wood and ceramic. There is a restfulness and cheeriness too to that beauty. It is the closest thing to walking into my house. Oh how I just long, long, with aching yearning to be home, to dwell in a place that is my own, that feels safe, that is familiar, that is of my own making, that is not intruded upon, that is not dictated by others. I long for ordinary common life of grocery shopping and making dinners in anticipation of seeing Sten driving down the driveway, coming home, calling in the girls from the adventures in the yard, of looking out my kitchen window at the Spanish Peaks, of cows grazing in the meadow below, of aspen leaves flickering in the sunlight of June afternoon. Rare is the occasion that I allow myself to even conjure these images, the tears just flow, the sorrow lancing out of me leaving me even more worn. So I go to Anthropologie walking in the midst of beauty of someone else’s expression of creativity, trying somehow to satisfy that craving to create, to put my hand to craft, that desire that has no outlet.

I circle my computer, giving it wide berth. It sits silent in my bag but demands that I attend to this blog, this accounting of Allistaire’s flesh, of my heart, of this ragged road I trudge, my feet tripping over stones, fatigue weighing down my legs, pressing my face flat. Sometimes I want to yell back, “What have I to say? What?!” For when I sit to write, really I am calling out again, not just at night as tears slip hot down my cheeks, not just during the day as I plead for patience, for wisdom, for grace with Allistaire as I battle her over food, over taking meds, I am calling out to the Lord. What do you have to say oh God? What answer do you give to my weeping, my raging, my flat silence, the groaning of my spirit, the trembling of self exhausted? I need more Lord! I need new! And sometimes it just seems like silence and I yell all the more and I cry out, do you hear me?!!! And I question if He’s really there. And I consider whether or not all my beliefs amount to nothing more that wild speech and desperate absurd hoping. This query ever turns to smile in the midst of my tears. Look at the beetle in all its wild extravagance of color, pattern and fanciful design. Does not the beetle reflect in Technicolor the glory of the Lord? The feather, the leaf, the shell, the flower, the seed…oh do they not all answer back with endless hallelujah that the Lord IS GOD?!!!!

So I yield, I bow, No, I fall flat before Him again. I tell Him, I worship You, I really do fall down in adoration of You, because Your beauty…it just stops me in my tracks, it stuns me, it shuts my mouth and I cry because You are too much, too gorgeous, too resplendent. But God, but God, do you see me? Do you see me here, with my face on the ground, my heart tearing from sorrow. Do you not see how broken I am, how spent, how undone, how torn and shattered, how desperately weary? What do You have to say to me? Be not only a majestic God, far off, above with eternal plans. Oh Lord, my sweet God, hear my cry, come down, come down low, come down to this dirty ground with me, meet me in my desolation. Can I ask such a thing of God? God of creation? God of eternity? The Ancient of Days? The first and the last, the beginning and end, the alpha and the omega? But I do, I do! Come Lord I plead, incline Your ear to me, bend low and look into my fearful eyes. Oh Lord I need to hear your voice, I need to see your face, I am faint and need to hear your voice. Don’t I love you as much for your condescension, for your coming down as for you greatness, you vastness and infinitude incomprehensible to me? Perhaps more, perhaps more. Perhaps it is that You, God of the Universe, creator of all things, sustainer of the universe, You who holds the elements together, don’t I love you most that such a God as You would see me, this vapor, this flower that fades, that you would love me, that you would care for me, isn’t this what makes my heart sing of your name, because of your tender love, your gentle hand. Oh Father how I need you.

But I tell You how You must show up. Don’t You see my sorrow? Don’t You see this expanse of eight long months fighting this relentless battle, separated from Sten, from Solveig, from home, from family and friends? This battle doesn’t let up and I need more, you see Lord! And I despise what feels like silence and I do not want to accept that what feels like a slow smile on Your face. My 21st Century Western-American self wants the next version. I want the upgrade. I need the upgrade. Yeah, that was good Lord but now I need more! Thanks for that old comfort, that admonishment of long gone days but I’m looking for a new word, to hear your voice provide me something that meets me now! Silence. Silence that feels like abandonment. Silence that feels cold and uncaring. Silence.

He speaks, speaks in His silence. His silence tells me, my child, I have already given you all that you need. I have already provided for you in abundance. “Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Well thanks a lot for that Lord. What good is that old trite, worn out saying? How is that going to help me here, now? “Eat the manna.” Hmmmm. Yeah, yeah, yeah. Same ole same ole.

But He’s right. I can pass over those old commands, those words as familiar as the curve of my nose. So common they’re hardly visible. I can disregard His truths because I’ve heard them before but I am fool to do so. The Lord is telling me, I have already given you instruction on how to live these brutal days. When I scoff and belittle His words, I lose. I’m left floundering. Panting and worn out. Brittle. Exhausted. I weary of who I am. Where is the water to satisfy, to cause flourishing? I want to be the tree planted by streams of water, bearing fruit in season, even in wilderness. Why deprive myself? Why leave the path of the Lord? Because it has become ordinary? Because I weary of perseverance? He draws me back. He woos. Entreating me, inviting me to once again rest, rest. Will I worry about tomorrow? Or will I worship Him as the God He is – will I entrust all my days to Him. Oh my flesh flails and rages, wild with the desire for control, to be the one who decides, because I only see my tiny finite view and I bellow with cries for what I want. A child in a tantrum. The Lord asks me to look up, to lift my eyes, to take His hand and rest, allow Him to lead. Will I consent to the simplicity of living this day, this hour, this very moment to its fullest? My weak flesh stomps its foot and declares, “But I’m just tired of having to do that. I want to be done with this hard stuff. I’m ready to satiate my desires. I want the good life now, here.” Do I really believe what I say I believe? Is this life what the Lord says is true or is it what my flesh proclaims is most important, significant, essential?

I shake my head, clamp my eyes and open again. Baffled, I think, shouldn’t I be fine with all this by now? Shouldn’t this be normal? Shouldn’t I have figured out how to live this life after so long a road? I circle back, wandering in weary heart from the Lord and then I circle back. Over and over again, I return to Him.

It was a spectacular sunny Saturday morning. Allistaire, with glee on her face, climbed the stairs and sped down the slide over and over. The air was alive, bright, crisp blue skies. We have to go Sweets, I tell her, we have to go now. Her shoulders slump and her smile turns downward, feet grazing the ground. I try to make the best of it but inside I grumble that we have to leave this lovely life, this world on the outside, and go sit in the hospital for hours to get a blood transfusion. I sit in the darkened little clinic room scanning Facebook when I come upon a post about a 14-year-old girl, Ahmie, whose mom is praying for her quick and quiet death as tumors fill her body. Awareness floods my body, heat, suffocating. This girl has cancer, she’s been being treated here at Seattle Children’s and she is dying. Likely today she will die and her mom will never hear her voice again nor see bright joy in her eyes. I turn away from Allistaire to hide the tears that overwhelm me. Hot, tight, hard to catch my breath. And I scramble, where is that verse, where is it? I must read it now. What does it say exactly? All I can think is “LORD GOD! Do you see this? Do you see what’s happening here?” My flesh fails, it groans, it groans. All I can think is, “The whole creation groans,” waiting for the Lord to return, waiting for the redemption of all things. And I have to be thankful that my girl is merely lying on a hospital bed on a beautiful Saturday getting blood. Things could be so different. What an agonizing prayer that mother is praying. What a horrid thing to have to ask the Lord for.

I find the verse. I read the verses just before and after, and then, well I have to read that whole chapter. Romans 8. Wow. I sit stunned. I’ve read it before, so many times before, but wow, wow. The little boat of our life had drifted and Romans 8 was like a great tether, binding us back into His truth, connecting all the maddening details of our days, lassoing, binding, weaving ourselves and our lives into the magnificent abundance of who HE is and what He proclaims this life to be about. I circle back. I’m invited to rest. He extends His arm, His hand and asks me to trust Him, that He is in control, in a glorious way that is beyond my imagining. His finger points, directing my gaze to the manna, the sustenance, the nutrients of this day, this hour, this moment. He reminds me that I am not alone, though I feel my whole world in a tenuous shatter, a terrifying vulnerability of completely unraveling. I am bound into Him, by Christ, by His Spirit. So do not mistake the simplicity, the familiarity of His instruction as something common place, as weakness, as insufficient, as elementary and unsophisticated. Romans 8. Wow. If I had one piece of paper to read the rest of my life it might be that chapter.

As I write, Allistaire’s eyelids flutter, and there is a distance in her gaze as she goes under, as her consciousness wanes. I laid her down on that narrow bed, the one that will slide into that great whirring circle of the mysterious machine, the one that will produce an image with brightness where there is increased metabolic activity, cancer. Then a CT image will be overlapped to reveal any masses present, a complete picture of her disease outside of her marrow. Still sedated, they’ll wheel her down the hall where Dahlia, the nurse practitioner, will plunge the great needle into her right hip once again, for the 21st time, to pull back a sample of her marrow. That wee vial will then make its way to the pathologist who will peer down at cells smeared on a slide, looking for evidence of flesh gone awry, of a creation broken, of cells groaning for redemption. The pathologist at Fred Hutch will then send more cells from the sample, joined to radioactive isotopes, speeding past a laser – each struck with light causing an electron to be disrupted, its fall documented by a wave-length of light. A scatter plot forms and zooms in the search for even the most remote evidence of leukemia. By the end of today I should know the results of the PET/CT, tomorrow will yield morphology results and either by the end of Thursday or Friday we will know results from Flow Cytometry.

I feel chased by two wild hounds, snarling, rabid. I grip Allistaire’s hand and we keep running, running, trying to outrun their ferocious intent to take her down. Cancer on one side and heart failure on the other. Her BNP was rising, all the way to 820 last Saturday and her ejection fraction was dropping, down to 26 a week and a half ago. I knew this bone marrow and PET/CT would soon reveal the state of her disease and decisions would need to be made. What would our options be? Was her heart starting to slip backwards? In April her ejection fraction was 38 and her BNP got as low as 231 (0-99 is the normal range). Her ANC last week was down to 54. What would her marrow do, how would it recover? Her cells for the WT1 trial will be ready as early as July 22nd. More chemo? If there’s anything more than 1% cancer in her marrow, the modified t-cells are unlikely to succeed at stopping the progression of her disease. What then? More chemo? Well, it would need to be more hard-core than Azacitidine if Aza hasn’t kept it at bay. But what, what chemo can her weak heart handle? Even if there is a chemo that is not directly hard on her heart, a more intense chemo will suppress her blood counts longer, more severely, leaving the door wide for infection, for a sweeping torrent that could once again overwhelm her heart, this time for good, no turning back. But what option have we? If there is much disease at all, we must do something! We must take the risk. Because if we don’t, we know the outcome. We know the outcome. We find ourselves stepping closer and closer to an edge. I think of Ahmie and her mom’s agonizing prayer. I shudder. I pray. I call out to the Lord. But you see, He has not promised to save her. He has not promised some number of years in this life that we think we have a right to – there is no allotment promised. I shudder. I pray. I pray.

Do not worry about tomorrow. Trust me for tomorrow. I will provide for all your needs. Eat the manna before you. Love her today. Live your today to the fullest. Live into what I proclaim this life to be about. Because it is not about granite countertops and painting the house a color you like. It is not about traveling to that amazing country. It is not about finally losing that awful belly fat that wiggles like a jellyfish. It is not about having a job and a pay check that makes me feel good about myself and gets me what I want. It is not about my comfort. It is not about the hundred thousand things my flesh says I need and the world clammers to echo back endlessly. Romans 8. Wow. The way of the Lord is so, so contrary to how I want to live my life. His words are hard words. I want to turn from them because they are hard, hard. Oh Lord, don’t you see I’m weary? Can’t you just let up for a while? Can’t you just let me live my own life for a little while? Can’t I just hunker down here and indulge? Lift your eyes. Lift your eyes!

So I lift my eyes. I look for the manna. I seek to love today. I ask the Lord to help me walk in His Spirit today. I yield tomorrow to Him. I call my friend, my older sister in Christ. I confess my sin. I ask for the Lord’s convicting. I ask Him to transform my heart, to love like He says love is. Forgive. Don’t keep a record of wrongs. Don’t let the sun go down on my anger. Believe the best. I seek times and ways to worship, to fellowship, to not make the mistake of trying to walk this hard road alone, without the surrounding of His people. I keep my eyes and heart alert. I’ve dreamt of Jens. Both times he gives me no answers. He is just alive. Alive. Jens is alive. He smiles at me in my dreams, his big sweet closed mouthed Jensie smile. And I smile. Jens is alive. Though my flesh, it be destroyed, yet with my eyes, I shall see God. I shall see God. Oh Father, Father, hold my fainting heart. My heart, my flesh it groans for You, for Your return, for Your redemption of all these woes.

It’s a few hours later. Allistaire was still recovering in the PACU from sedation from her bone marrow and PET/CT. It was minutes before 5pm. I eventually got through to Dr. Cooper. Ugh. So wretched. Six or seven spots of cancer bright on the PET scan – too small yet to show up on CT, but there, there and some in awful places you just can’t radiate – her spine, her sternum, her left humorous, her pelvis. I couldn’t keep track of them all, the words blurring in my ears, my heart growing faint, heat up my neck, my legs weak. “Can I see the scan? I need to see the image.” Sweet Olwen, the PACU nurse, wheeled us upstairs to the Hem/Onc clinic, Allistaire still too wobbly to walk and I clutching her in my arms, cheek against the extravagant softness of her fine beautiful hair, destined to be gorgeous and curly by the looks of how it’s coming back in. Oh God. Oh God. Have mercy. An out-of-body experience. Looking on from afar. So this is how this goes. This is how kids die from cancer. This is how the story dwindles and fades and wears thin until there’s nothing left. “But I don’t know how to be done,” I quietly wail to Dr. Cooper, the tears in his eyes because he too has a five-year old child. Dr. Gardner thinks it would be crazy to give her high-dose chemo with her heart so weak, so bound to fail if an infection comes. So this is how you die of cancer. I remember asking Lysen, our nurse, long ago, over three years ago, “explain to me, I don’t understand, how exactly does cancer kill you? What actually happens?” I watch our path from afar and I fear I know where it is headed and my whole flesh just simply falls, fails, quietly crashes. She is too alive. Too alive. How? How do you stop the fight? We’re not there yet, I know. We need the bone marrow results. We need to know how much is in there before we really no what options she has. Go down in flames? Go quietly? What a brutal wretched quandary. I despise, revile it all! Oh God! Oh God!

Incline your ear to me Oh Lord, hear the faint beating of my heart, my haggard breaths, the silent heaving of my chest. Be merciful. Of Father, Father, come down low, meet me here in this dark hole. Hold my hand, bind me to you. I put my hope in your holding of tomorrow. Show me the manna in this day, direct my vision to your sustaining. Hear my cry oh Lord. Be gracious. See our broken family, each of us ravaged in this trial. Come Lord, come down to us.

Romans 8 New International Version (NIV)

Life Through the Spirit
8 Therefore, there is now no condemnation for those who are in Christ Jesus, 2 because through Christ Jesus the law of the Spirit who gives life has set you[a] free from the law of sin and death. 3 For what the law was powerless to do because it was weakened by the flesh,[b] God did by sending his own Son in the likeness of sinful flesh to be a sin offering.[c] And so he condemned sin in the flesh, 4 in order that the righteous requirement of the law might be fully met in us, who do not live according to the flesh but according to the Spirit.

5 Those who live according to the flesh have their minds set on what the flesh desires; but those who live in accordance with the Spirit have their minds set on what the Spirit desires. 6 The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace. 7 The mind governed by the flesh is hostile to God; it does not submit to God’s law, nor can it do so. 8 Those who are in the realm of the flesh cannot please God.

9 You, however, are not in the realm of the flesh but are in the realm of the Spirit, if indeed the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, they do not belong to Christ. 10 But if Christ is in you, then even though your body is subject to death because of sin, the Spirit gives life[d] because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of[e] his Spirit who lives in you.

12 Therefore, brothers and sisters, we have an obligation—but it is not to the flesh, to live according to it. 13 For if you live according to the flesh, you will die; but if by the Spirit you put to death the misdeeds of the body, you will live.

14 For those who are led by the Spirit of God are the children of God. 15 The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship.[f] And by him we cry, “Abba,[g] Father.” 16 The Spirit himself testifies with our spirit that we are God’s children. 17 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.

Present Suffering and Future Glory
18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. 19 For the creation waits in eager expectation for the children of God to be revealed. 20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that[h] the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.

28 And we know that in all things God works for the good of those who love him, who[i] have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.

More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”[j]
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.