Tag Archives: Dr. Marie Bleakley

Oct20

Traction

Posted on October 20, 2015 by Conglomeration of Joy

(Top pic: Allistaire 14 days after the first of three doses of Mylotarg; Bottom Pic: The day before the first dose of Mylotarg)

In late August of this year, eleven native Christian missionaries near the town of Aleppo, Syria were killed for their refusal to deny Christ and return to Islam. Three were crucified and eight were beheaded after the women were publicly raped. According to villagers who witnessed this, one woman reportedly “looked up and seemed to be almost smiling as she said, ‘Jesus!”

Perhaps you don’t believe this report. I immediately thought of Stephen who stood up for what he believed, that Jesus Christ was the prophet God had promised to His people Israel and to Moses. In the face of his life being threatened, he refused to back down.

Acts 7:54-59: “When the members of the Sanhedrin heard this, they were furious and gnashed their teeth at him. But Stephen, full of the Holy Spirit, looked up to heaven and saw the glory of God, and Jesus standing at the right hand of God. “Look,” he said, “I see heaven open and the Son of Man standing at the right hand of God.” At this they covered their ears and, yelling at the top of their voices, they all rushed at him, dragged him out of the city and began to stone him. Meanwhile, the witnesses laid their coats at the feet of a young man named Saul. While they were stoning him, Stephen prayed, “Lord Jesus, receive my spirit.” Then he fell on his knees and cried out, “Lord, do not hold this sin against them.” When he had said this, he fell asleep.”

When I went to wake her, a stream of blackish blood had dried across her cheek as she slept. Sometimes I would hold up my hand to block the right side of her face from my view, so that I could only see her left, so I could see the girl I recognized, my sweet Allistaire. She would just cry and cry holding her little hand up to her right cheek. She couldn’t close her jaw on that side, her teeth wouldn’t fit together, making eating difficult and painful. Her eye was so bulged out and full of trapped fluid that I could barely see her iris. I gave her as much oxycodone as the doctor allowed and let her sleep except for brief periods of eating. I sat on the bed in the dark, only the glow of the computer screen visible.

Outside the world was bursting with life on beautiful fall days. We were trapped in ever-deepening darkness.

At some point in the span of these brutal days, it suddenly occurred to me, the thought seemingly out of the blue…I am not afraid. I am not afraid of Allistaire dying. I am not afraid of the many awful ways situations in my life may turn out. The realization shocked me but as the words formed in my mind, my deeper self affirmed, fear no longer has me caught by the throat. I am released. I have been freed from its strangling grip.

When I read about the woman, already raped, about to be beheaded, the woman who seemed to smile as she said, “Jesus!”…I nodded my head, yes, yes I can see how such a thing could be true.

People say to me all the time – ALL the time – I don’t know how you do this. Behind such an astonished statement is the desperate hope that we will never be forced to endure such realities. We look at our weak small selves and proclaim – I could NEVER do that! Because we don’t want to, because we have created some sort of system in our mind, some law of the universe we desperately hope is true, that if I can’t endure something, I won’t have to right? But the truth is – the world IS full of suffering and human beings have had to endure terrors far beyond their little girl having cancer and having to watch a tumor gnaw away her face. We are resilient beings. You do what you have to do. We are overcomers and we crave such stories, it is core to our humanity.

With tenacity, with grit, with determination, with perseverance, perhaps with sheer rage, I can make it through this. I can make it through, if even the worst comes to Allistaire. But. This is human effort. This is what my flesh can muster up.

The paradox, the absolute resplendent beauty and otherness of God says, “No. No Jai. I will use these circumstances with Allistaire to tear you limb from limb. I will allow you to be decimated. I will crush you so that you gasp for breath. I will gouge at your heart. You will know anguish and darkness. Panic and terror. And at long last when I have laid you to waste your faint heart will groan and I will incline My ear to you. And beyond all comprehension you will come to know a strength you could not have imagined. You will know a peace that surpasses understanding. You will drink of Me and not grow faint. You will soar on wings like eagles.” These used to be just pretty words. Words I believed, but pretty little words you pat on the head and paint in some scrolly font and frame on the bathroom wall.

How many times have I in desperation, with tears said to Allistaire’s various doctors, “but I don’t know how to let her go. I don’t know how to take her home to die.” As I sat in the darkened room on the very grimmest of any days in this long fight, I felt rest. I am not afraid. Oh, I am radically sad, to my very core, but fear no longer saturates, suffocates. It comes to this, at long last I believe the Lord will actually provide all that I need in the moment – not only to endure but to experience Him turning darkness into light, not because He changes my circumstances, not because He ends my sorrow, but because finally I have tasted of Emmanuel – the truth of “God with me” has sunk yet deeper into my very marrow. I once read a book as a teenager, Abide In Christ, by Andrew Murray. I abide in Christ as Christ abides in me. Sounds so simple yet mystery. I have come to believe – believe – how small a word, how utterly insufficient – nevertheless, I have come to believe that whatever my need, the Lord will meet me in that moment, in that circumstance, and supply in abundance.

Could I endure being publicly raped? Could I say yes to Christ knowing if I denied Him they would stop torturing my child? Could I bow to the blade that would soon decapitate and find joy in that very moment? Can I know peace and even joy in the midst of incomprehensible sorrow should Allistaire draw her last breath? I do not claim to know how the grace will come but I trust that God will be faithful to meet me fully in each moment and supply all I need to keep seeking His face – that even in the very darkest days He can make my face radiant.

It was odd to sense such peace in face of the thought of Allistaire’s death on the very threshold of the coming chemo we hoped would turn things around. In the very span of days that the Lord seemed to remove the last stranglehold of fearing her death, there was hope that there might still be some way through. The peace was unrelated to the hope of chemo working. The peace lay coupled with death, yet, like burrowing through dark soil and rock, while you hope one day to come out into the light , you count as victory any forward motion.

It has been 22 days since Allistaire began chemo for this round and 16 days since her first dose of Mylotarg. Night and day. You can now hardly tell there is anything off with her eye. You have to be looking for it to see it. The bleeding has stopped, her sinuses no longer run, her cheek and eye seem normal in size, her double vision is gone, the pain is completely gone. All that remains is numbness on the side of her nose and upper lip and an occasional expression with her eye that is not completely normal. She is happy and full of joy and giddiness. You would not know she had cancer unless you knew she had cancer.

Today I stood in front of two large computer screens with the radiologist, who took considerable time to explain the images and measurements from yesterday’s brain MRI. The actual dimensions of both “granulocytic sarcomas,” or chloromas or tumors, have diminished only somewhat. The larger tumor on the right is at its widest still just over 4cm. The most impressive impact of the chemo is not best understood by measurements in centimeters but the images – wow – the vast majority of the inside of the tumor shows up black on the image – dead cells. There is really only a “thin residual enhancing rim of the cellular tumor.” This is most dramatically seen on the tumor on her right side in the “maxillary sinus,” where it no longer pushes up on the orbit/eye and no longer pushes in on her sinuses. The radiologist informally said it looks like about 80% of the bulk is gone. I won’t lie, it was pretty disturbing seeing the images from the September 29th MRI. Every last bit of space was full of leukemia and it clearly had nowhere to go except into her bones. Thank you God. Thank you Mylotarg.

Speaking of Mylotarg, Allistaire and I, along with Solveig who we joyfully had with us over her fall break, had the honor and joy of meeting Dr. Irwin Bernstein. He is both a lead researcher at Fred Hutchinson Cancer Research Center and Chief of the Division of Hematology/Oncology and Bone Marrow Transplant at Seattle Children’s Hospital. This is THE guy who invented Mylotarg – okay, it was his lab that created this monoclonal antibody drug conjugate that targets CD33 and then unleashes the cytotoxic power of calicheamicin on leukemia cells! It was just so incredible getting to sit down with him – this man who for decades has worked on cancer research and whose perseverance, brilliance and team work intersected our lives to literally save Allistaire! I attempted to fully overwhelm him with my gratitude that he and the other folks in his lab would be spurred on! Hopefully seeing Allistaire’s sweet face and a gruesome picture of her face pre-Mylotarg gave him encouragement that what he does has real, tangible impact! Ever wonder why I am such a promoter of Fred Hutch? This is just one example of why. So much of what benefits Allistaire as she is treated at Seattle Children’s comes from the incredible science being done at Fred Hutch!

The other thrilling development is that last week I met with Dr. Cooper, Allistaire’s primary oncologist, Dr. Law, her cardiologist and head of the heart failure and transplant team and Dr. Bleakley, our primary bone marrow transplant doctor. Also present in support were Jeff and Karen on the PAC (Pediatric Advanced Care) team and our social worker, Megan. While I will hold off in explaining the details, in short, the outcome of the meeting was an agreement to aim toward getting Allistaire to transplant as fast as possible. With Allistaire’s ejection fraction on her last echo being 45, she has finally reached the threshold for transplant. There is a lot more to say on this subject but for now, the point is, we are now in a position with Allistaire’s cardiac function to consider transplant! I can hardly believe she has made it this far. Dr. Bleakley proposed a very interesting transplant option that I initially wanted to spit right out of my mouth in rejection – however, after more information and consideration, it seems it may be an incredible option for Allistaire. A number of tests are underway to determine our options moving forward. The most immediate question is what chemo(s) to give Allistaire in the coming, and hopefully last, round of chemo before transplant. While Mylotarg has been extremely successful for Allistaire (at least based on the brain MRI – we still have to see what’s in her marrow in the upcoming biopsy) it has in the past, when given in one large dose, been associated with VOD (Veno Occlusive Disease) during transplant. Dr. Cooper is exploring chemo options available for Allistaire.

A month ago, two months ago, I just felt flat tired, worn down utterly. Allistaire’s great response to Mylotarg along with the possibility of a bone marrow transplant in the relatively near future has created traction and, man, just gives you something to aim for instead of feeling like you’re stuck in an never-ending circle. This week marks one full year since this most recent relapse. We have lived in this wee hotel-like room at Ron Don for one year. Had you told me on October 24th 2014, that I would still be living away from home a whole year later, without having even gotten to transplant yet – well, I could never have imagined how I would get through all that has transpired. The Lord knows what is to come. Hem me in Lord, behind and before.

We just have so much to be thankful for. Thank you to the mom and daughter who gave Allistaire the obnoxiously large Frozen balloon and the purple hippo – just because – because you cared though you never met her. Thank you to Dr. Nixon, the radiologist, who took the time to answer my myriad of questions, thank you to the person who gave me that Trader Joe’s card so I could buy lunch and dinner and dried strawberries that Allistaire likes after her yucky medicines. Thank you to the unknown person who sent me that Kari Jobe CD – I hit “4” over and over and sing out loud in my car, “I lift my eyes, I lift my eyes. Maker of the heavens. Keeper of my heart!!!!” Thank you to my parents who just keep helping to take care of Allistaire and showing me so much love. Thank you dear friends who have provided us with airline credit and tickets so Allistaire and I can go home and Solveig can be here with us and Sten can fly out to see us and miss less work than if he drove. Thank you to my in-laws who help us so much with Solveig. Thank you to my sweet husband who works hard at his job and keeps things up so well at home – including my ridiculous plant collection, far too populated with ferns. Thank you to so many of you who have given financially to cancer research. Thank you, thank you for so many of you who have fallen on your knees before our Lord, who have wept on our behalf.

“Do not look at what you do not have, at what will be loss, rather, be expectant, be on the look out for what I will do, for the bounty I will bring,” the Lord softly declared to me on that gray December morning in 2011. Oh Father. You have been faithful, so faithful. You have become more dear to me than I could have imagined. You have ravaged me and shocked me at your ways. Your words have taken on flesh and color where once they were just dry bones. You, Oh Lord, have been good to me. How I love you. I prayed to you on so many first stars in the night sky, “Father, should one day something happen in my life that threatens to cause me to deny you, to leave you, hold me close, do not let me go.” You have heard my cry.

Aug8

Miserable Mess

Posted on August 8, 2015 by Conglomeration of Joy

Standard

“Today is the worst day of my life,” Allistaire said to my mom yesterday.

She hardly smiles. I try and try and maybe occasionally there is a flicker. Mostly she just lays in bed, curled on her side, flat expression or grimaces of pain. The hurt intensifies, the moans quicken. I glance at the heart monitor and watch her heart rate climb, climb. 150, 160, up and up. Sleeping these days it’s in the 140s. Sometimes it’ll dip down to 115. A normal resting rate used to be in the 80’s or 90’s at night, about 105 in the day. Her heart is working so hard. A flurry of intensity.

“I’m gonna throw up!!!” she screams and I tell her, “NO, NO, you mustn’t! You HAVE to keep those meds down. Your heart is hurting and needs these meds!” She struggles to hold on, she pushes through and manages a few more minutes until her whole body is taken over by the anguished effort to empty her stomach. Face contorted with neck thrown back, back arched and bottom jaw stretched as far down as it can go, mouth wide as the constriction of her stomach demands to eject its contents. Retching is really the word for it. Great green gushes of dark bile arch into the air and down into the basin. Over and over her body is racked with contractions. When at last she is spent and there seems to be nothing left, I ask her if she feels better. “No, no, I feel worse,” she says with sad haggard voice.

I make her get up and walk. “Even if you cry the entire time,” I tell her, “you will walk this lap around the Unit.” She shuffles slowly along, one hand gripping Doggie and the other in mine. Small warm. Oh how I love her. There are greetings as we move through the halls. Cheers. “You can do it Allistaire!” Looks of love and compassion. So many nurses and CNA’s that have loved us for so long, have watched Allistaire over the years, struggle and victory, defeat and perseverance. “My tummy hurts,” she cries. She whimpers and occasionally yells out on our loop, at last she collapses back in bed.

Her heart rate, oh man. We’ve got to get this thing under control. Her little heart is working so hard. Her BNP (measure of heart distress) was 1,700 on Sunday. I haven’t seen numbers like that in months and months. Her BNP a week ago was 360 (normal is 0-90). She had an echocardiogram and her ejection fraction has dropped from 36 two weeks ago to 22. We are all hoping desperately that this is a temporary hit and not a long term regression.

Late on Thursday evening Allistaire and I arrived at my parents house with the plan to stay the night and get up early the next morning to pick Solveig up from camp. I so wanted to see her little eager face, to have her tell me all about her week. I wanted to see the transformation from the scared, nervous girl I dropped off on Sunday to the one that would be beaming with joy. We had been in the house no more than 5 minutes when I felt Allistaire’s face as she nuzzled up against my leg, having returned from the other room ready to change her attitude. Oh my gosh she is so warm. The internal debate, the desperate desire to ignore what I sensed flooded me with heat but my mind sternly declared, “Take her temperature, just do it, you must. It doesn’t matter that you just drove all the way here and may have to turn right back around. Focus. Take her temperature.” Solveig’s sweet face lingered in my mind. I turned to Allistaire. 102.4 A fever. Oh crap. We’ve got to go, we’ve got to go. Allistaire has no ANC, she has no defense. Something is brewing in her and things can move fast. 103.5 We were out the door and back on the road, speeding through the night. I talked to the Hem/Onc Fellow on call. I want blood cultures and antibiotics ready for when we get there. I talked to the ER. I don’t want to have to wait. I drove 70 mph the whole way, rehearsing in my mind what I’d say to the officer if I was pulled over. Allistaire cried and cried, so sad to not see Sissy. My jaw was clamped closed, hands gripped on the steering wheel, intent, scanning the night. My whole heart screamed out into that darkness, “But I have TWO daughters!”

By 3:30am on Friday morning, we were at last settled into our room on the Cancer Unit. Blood cultures had long ago been drawn and antibiotics were nearly ready to go in for the second time. All day Friday she fought fevers. At 13.5 hours something started to grow in the blood cultures – bacteria described as gram positive cocci and chains. Another big gun antibiotic was added to cover more bad bugs – she was now on Flagyl, Cefepime, and Linezolid. She has VRE (Vancomycin Resistant Enterococci) which means that if this bacterial infection was Enterococci, Vancomycin would not be enough to stop it, we need something bigger, broader. With another day’s growth the villain would be revealed as Streptococcus Viridans.

As Saturday began her fevers waned but a new woe broke into the peace of the morning with sharp painful screams. She was inconsolable. What could be going on? An X-ray was ordered to look for overt blockage in her gut. Nothing could be seen. A CT with contrast was ordered. For three hours I tried to get Allistaire to drink the contrast, but over and over she would throw it up. I was desperate. We MUST get the contrast in or the doctors can’t see what’s going on inside. Finally, we just decided to go for it and hope for the best, a sufficient image. Thank the Lord there was no typhlitus but there in the loops of her intestines were great black spaces, gas trapped and a gut that would not move, that had altogether stopped. When we got back from the CT she threw up a huge amount of contrast. I couldn’t figure out how she could throw up so much, how so much could still be in her stomach when she had been drinking it over the course of hours. Well now we knew, for some unknown reason, Allistaire has an ileus. There is no physical blockage but there is a mechanical one, her gut won’t move and so that gas is just stuck in there and whatever she puts into her stomach just sits there until it is forced upward. She was immediately made NPO (Nothing Per Oral – meaning she can’t eat or drink). After much conversation and a consult with the GI docs, it was determined that she would be allowed a few occasional sips of water and to take her oral cardiac meds that cannot be converted to IV.

This ileus is a mystery. We don’t know what has caused it. Regardless, it is incredibly painful for Allistaire and she is now on frequent pain meds and anti-nausea meds. Despite being NPO, her stomach continues to make acid and therefore regularly fills and requires her to retch it all up. The GI doctors recommend her regularly curl up with her knees tucked under her stomach, her little bottom in the air, in hopes that the gas will slowly move up and out. We now have an activity plan and walk around the unit hoping the movement will help her gut to get moving. The next step will be to add a medication that can help wake up the gut by blocking certain receptors. A third step would be to have a NG (Nasogastric) tube placed to suction out the contents of her stomach and giver her relief. As you can imagine, Allistaire is terrified of this prospect. The reality is that this will simply take time to resolve, there’s really much we can do directly to solve this.

Not only does the ileus create immense pain for Allistaire which raises her heart rate but it also necessitates that she be on TPN (Total Parenteral Nutrition) which is essentially getting all of your food by IV since her gut is not functioning. Being on TPN is viewed as a “Grade 3 Toxicity,” which in turn bars Allistaire from being eligible for the T-cell trial. While we assume the ileus will resolve and she will have no problem eventually returning to eating normally, while on TPN she is disqualified from participating in the T-cell trial. Because this means that the possibility of getting the T-cells is firmly put on hold until her gut starts to function again, the cardiac anesthesiologist did not feel it worth the risk for her to be sedated today (Tuesday) for the planned PET/CT, brain MRI and bone marrow aspirate used to determine the state of her disease. The fact that Allistaire is throwing up would necessitate he put in a breathing tube during the sedation so that she won’t aspirate. A breathing tube increases the risks of the procedures and he was considering arranging an ICU backup plan. All her procedures have been cancelled for now and will hopefully happen the beginning of next week in hopes that with more time her heart function can improve and perhaps so will the ileus, thus reducing her vomiting and that all in all sedation would be less risky at that time.

All of this is incredibly disappointing and scary. Since Allistaire’s gut is not functioning, everything must be converted into IV form which means a ton of fluids are being pumped into Allistaire’s veins which in turn creates much more work for Allistaire’s heart. Normally all her food and liquid and medicines would go into her gut, not at all adding work to her heart. This is a vicious cycle. She’s in crazy pain so we give her pain meds. The pain meds, even the non-narcotic ones, act to keep her gut suppressed, but her pain causes higher heart rates. Until the ileus resolves, she is taking in a ton of fluids (even though this is being tightly monitored, restricted and managed by Lasix) which is also hard on her heart. You can’t use Lasix too much to get her to pee off fluid because her kidney’s don’t like it. Already today her BUN is 42. I want to throw up my hands. Today her BNP was 2,600. I know it is nearly doubled simply because she had a transfusion of red blood yesterday. Man, we need her ANC to come up. We need her marrow to recover so she doesn’t keep needing transfusion. Everywhere I turn there are things we desperately need to look different if she’s going to have a shot at making it.

Dr. Cooper reminds me that this is exactly the sort of scenario the doctors have described to me that can happen with chemo that suppresses her counts to zero. The only chemo that really has a shot at taking down her disease also wipes out her white blood cells which defend her against all sorts of bacteria and viruses. To get an infection almost always means the necessity to respond with an increase in IV fluids of various types. Her heart just limits everything that can be done. But here’s how I see it: we know the outcome if Allistaire is not given chemo of any significant strength – her disease will progress and we won’t be able to stop it. She will die. The alternative is we give her chemo that may stop her disease while opening her up to awful infection possibilities but that she may be able to make it through. One choice leads to only one end – death. The other has the chance to work and just maybe infections won’t be the death of her. Maybe just maybe there’ll be a way through for her.

Statistics. Oh what deafening power they seem to possess. Allistaire probably won’t make it. The likelihood is that she will die. Even from the time she was diagnosed she only had about a 60% chance. Relapse wipes that percentage down to nearly nothing. Almost exactly two years ago, when disease was found after transplant, the doctor told me Allistaire had a 5% chance of survival and probably wouldn’t live 6 months. Okay. So a 95% chance she’ll die. But she didn’t die in those 6 months and two years later she is still here fighting. Somebody has to be the 5% is what I declare to myself over and over. Allistaire just may be in that 5%, who knows? And you know what? Statistics say Allistaire should never have begun this crazy path. Her type of AML, M5, only constitutes 2.5% of all children diagnosed with leukemia. Only .8 to 1.1 in a million children are diagnosed with M5 AML each year. She is literally one in a million. So while she may only have the slightest chance of survival, well chance, chance really has nothing to do with it. Chance has no power. Chance is simply an observation of what most often occurs.

I call out to the Lord over and over because I believe it is He that holds her life. He is the one to determine her path. It is not chance or probability or statistics that determine the outcome of this brutal road, but the Living God, my Father. And it is a peculiar sort of wretchedness to know that the one I love, the One who declares to love me, the One who is able to sustain her life…He may not. He may allow death to come and swallow my sweet child as He has so many other children. On the surface this seems to be an ultimate hypocrisy, and ultimate deceit – not love but horrific cruelty, betrayal. But He calls me to His Word – to fix my eyes on Him and to be reminded down into the core of me, that He is God, GOD!! It is His to give life and bring it to an end. It is His to determine the course of my life, the course of Allistaire’s. He reminds me to separate an audacious 21st Century American view that I have some sort of right to a healthy 80 years on this planet from what He declares this life to be about. Because it is not about marking off the bullet points of beautiful childhood, rigorous college education, fulfilling meaningful successful career that gets me enough money to have a nice house and vacations for myself and my perfectly attractive, wonderful spouse and children followed by a leisurely retirement and at long last a pain-free dignified death surrounded by everyone who has loved me and honors my amazing life. No, really God makes a much simpler claim to what this life is about. He says this life is about coming to see that HE is the source of life, true, eternal, abundant life through the death and life of His son Jesus Christ. And if you have come to see Jesus as the only source of life, then go, go, live your life in such a way as to draw the attention of others to see His resplendent beauty – Christ – not a path to life but Christ who IS life itself. Christ is not my guide. He is not my sherpa hauling water and nourishment for me as I walk through this life. Christ Himself is the very way, He Himself is the water, the food, the healing.

So who am I to say what my life should look like? Who am I to say how many days I ought to be allotted or what circumstances should fill them? Over these long years the Lord has worn me down, cut here and there, gouged out, cauterised. It has hurt. At times it has been agonizing. There is still much work to be done on this proud, self-sufficient, trembling heart. But I can say, that somehow, mysteriously, I am coming more and more, millimeter by millimeter to trust Him more, to rest, truly rest in Him. Honestly, I really don’t think Allistaire will make it out of this alive. I am utterly confident that God can make a way through for her. He has made a way through many times when it felt like all the walls were crashing down on us. He can do it again. He may and that would be glorious and oh how I would rejoice and rejoice and thank Him for all the days that He has carried her so far.

But there is a way in which I feel like I am just living out days that must come. We cannot say we are done because she is far to alive. As long as there is an open door before us and Allistaire still seems to have vitality, we will walk forward. But somehow it feels that we are coming down to the end of things. I guess the oddly beautiful thing though, is I’ve stopped caring so much about what will be. I sipped warm foamy latte yesterday and realized that I have been going to that coffee shop and drinking that coffee all through fall into winter into spring and now summer. Fall is coming. I cannot begin to imagine Fall. There is no end in sight and what I mean is, I am no longer fixing my gaze on the end. At long last, I am coming more and more to dwell in this present. To feel the incomprehensible soft wonder of peach fuzz along the curve of her forehead down across her little nose. I am soaking up the sensation of her little bottom tucked up against my stomach as we lay in the bed together, my fingers running through her flaxen hair. I rest my cheek on her cheek. I listen intently to her voice. With gentleness I change her diaper. With sternness I demand she take her meds. I live out each task and detail. I want to fully inhabit not just these days but all the moments and actions that accumulate to eventually be gathered up into the satchel marked “day.” I look over labs, all those little numbers painting a picture of her flesh, telling a story of the tug of war of life and death, sickness and health. The numbers, how they have for so long knocked me off my feet, casting dark shadows over so many days. Their power is slowly draining away. I can control so little. The doctors have so very little power. We are all just doing our best, but really, it’s out of our hands. I have not relaxed my guard over her, I will not let up in my fervor to examine every last angle, but no longer do I grip her with white knuckles desperate and crazed. She is my sweet little love and I will do my best to care for her every moment and every day given to me.

Yesterday evening I stood looking out across Lake Union toward the beautiful Seattle skyline, the sun having already set, leaving mellow pinks blending with the last of the day’s blue. Behind me cheerful, high energy music played and hundreds of people gathered. Doug, the camera guy, said it best – “beauty and affliction.” There’s just so much of that. How strange that the thread weaving all these people together, people dancing, drinking beer and chatting – we are all bound together by sorrow, by loss. Last night was the big Obliteride kick-off party at Gasworks Park. I had the opportunity to stand up for a few minutes and relay a bit of Allistaire’s story and the incredible need to advance cancer research. I dwell within just one story among thousands and thousands, millions really, of stories about how cancer has stolen away those beloved, cherished, bright. Today I have the joy of having some fun team time with the Baldy Tops. Tomorrow we will put into action all that we have prepared for. We will swing our legs up and over that frame, hoist ourselves onto the seat, clip into pedals and at long last flex…will our legs muscles to contract, propelling us forward, down the route.

Thank you ever so much to each of you who have given sacrificially of your own money, money you could have spent a thousand other ways, but chose to give to directly enable the furthering of cancer research. I’ve said it before, but I’ll say it again. It all seems so abstract, science, experiments – weird stuff. But it’s a real man like Stan Riddell who is an immunology expert at Fred Hutch. I saw him standing on the outskirts of the party at Obliteride last night. I introduced myself. I looked into his eyes and told him thank you, thank you. He went on to tell me that he is the doctor that trained Dr. Bleakley, Dr. Gardner, Dr. Jensen. Dr. Bleakley is our amazing transplant doctor who designed the naive T-cell reducing transplant that is attempting to minimize the awful impact of GVHD as a complication of transplant; this was the transplant we had so hoped Allistaire would be able to have. Well, you know Dr. Gardner as one of our beloved smarty pants doctors who has cared for Allistaire so long. What you may not know is that along, with Dr. Jensen who is the lead researcher at Seattle Children’s Cancer Research specializing in pediatric cancer research, she heads up the amazing T-cell trials at Children’s for the more common type of childhood leukemia, ALL. I met Stan’s family – his wife and two daughters. I told them thank you for the sacrifices that they have had to make to have a father who would spend so much time at work, in the lab. Your money goes to real people, doing real amazing work. When we fund cancer research we are putting more tools and time into the hands of these brilliant minds who work feverishly to understand the staggering complexity of cancer. You free them up from having to spend so much time scrambling to cobble together enough money for the next trial. You help them design and pay for that crazy cool piece of machinery that doesn’t test 10 samples of DNA but a thousand. You help pay for the lab assistant who will run the experiment and enter the data. All of this enables research to happen at a greater pace, speeding up the discoveries that lead to cures. This is where your money goes. Perhaps it still seems abstract, like just writing a check because you love Allistaire, your heart hurts for our family and you just want to do something, anything to help. Well, for that I sincerely thank you, but just know…know that not only do we feel loved and supported by your act of giving, but it is making a real and tangible impact, not just for Allistaire but for many children, many adults. Perhaps one day you will be the one to benefit from advances in cancer research.

Since I began this post many days ago, Allistaire’s ANC has popped up to nearly 300. While Friday’s echo still showed an ejection fraction of 22, her heart rates are drastically lower and nearly normal. The cardiologists have added two more medications to try to improve her heart function – Isosorbide dinitrate and Hydralazine. There is no resolution of the ileus yet and she remains in pain but her cheeriness has improved and she’s actually joked around a bit. Her legs have gotten stronger again and we’ve doubled the distance of each walk. A PET/CT, brain MRI and bone marrow are all tentatively scheduled for Monday.

For Obliteride pictures and updates check out the Obliteride Facebook page and/or the main Obliteride website.

May31

Jail Break

Posted on May 31, 2015 by Conglomeration of Joy

Standard

I used to think I was safe, that wild animals, the beasts, the possibility of having my flesh torn off of bones, lay up there, out there, far off in dark mountainous woods. I thought it would be easy to simply steer clear of such terrors. As though somehow my own willing of my footsteps could keep me from entering their realm, that by hope, optimism, some silly assumption of impenetrability, it would not be so hard to keep those ravages at bay. I walked in a sunlit land, blithely believing, perhaps not even believing but never even thinking that they might tear down the hillside at terrifying speeds, absolutely bent on destruction. They do not see a heart full of hopes, of dreams, of ideas, of lists of yearnings, eyes bright. Their horrible feet carry them, saliva flinging back behind as their daggers flash, crazed eyes.

Flood waters tearing homes in half, separating husband and wife with children. Father of Solveig’s classmate, life cut short from heart attack. Jens on a mountainside. Nine year old girls sold into slavery by Isis. Kassidae home from yet another T-cell trial that utterly failed to stop her cancer.

What is it like to have no more options? How can I fathom a journey where suddenly the road simply ends. No destination reached, just a faint trail blending into nothing, melding into the landscape. And then what? And then what? Where does one go from there?

I see a small child standing alone in an open space. Nothing in their hands. No clothes. No defense. Utterly vulnerable. I stand and watch, unable to move, unable to raise my hand to stop what I know will come, what is coming.

The child shivers, confusion in their eyes. And then you sense it, before even sound reaches your ears. Some sort of terrible rushing, some silent invisible foe rushing through the forest. At last it breaks through the trees, snarling, feet hardly touching the ground as it bolts for your child, savage mouth wide. And do you turn away? Can you stand to watch the beast tear into your child’s flesh? Dare you know the moment their life is extinguished? How much will be ripped and torn before their eyes go limp and lifeless?

I heard these words in a beautiful song, a song meant to comfort, a lullaby.

“Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake as long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember

If you feel alone
Facing the giants
And you don’t know
What to do

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe”

My heart was breaking as I listened to these words. Hot silent tears slid down as I drove, facing forward, intent on the task of getting there. “You’ll have your own battles to fight when you’re older.” But no, no, Allistaire did not get to be older before she had her own battles to fight. She was just 21 months old when her battle against this ravaging beast first came, intent on taking her life.

“Mommy, I like that part, ‘you feel alone, facing the giants, and you don’t know what to do.” Her soft sweet voice came to me from the back seat. Of all the words in all the songs, these are the one’s she speaks out loud, repeats back to me, the words that most resonated with her little girl heart.

You think, unconsciously believe, that as a parent you can protect your child, that somehow, by force of will you can magically keep them from harm. Surely there is nothing more core to being a parent, to being a mother, than protecting the life of your child.

But my love, oh my love, so fierce, stuffed full with all my might and zeal, my hope…it is powerless to protect against some enemies. I never made that promise to keep her safe, I just assumed it would be true. Of course she will be safe. Of course I can wrap her up in a hug and overcome any giant.

No. There may come a time where there are no options left and I will hear the rushing of wind through branches as that beast comes tearing through the forest, breaks out into the opening and sinks its wretched brutal teeth into the one I love, this time sparing nothing. I may be left with my heart bleeding out in the open space, tattered, wounded, ravaged child in my lap, never again to see her bright eyes, never again to hear the most beloved sound on the whole earth, her laugh, her voice full of wonder.

But I know this. She will not stand alone. If such a time comes, I will stand with her, hand gripped in mine and I will face that beast with her. I will not turn away and I will not leave her, and that may be all that I can do. My eyes will weep until my own flesh is laid to rest.

To Shannon, to Kate, to Susan, to Becca, to Rachel, to Julie, to Beth, to Devon, to you many more mothers who have walked this road, who stood with your hand gripping your child’s as that beast came to devour, my heart weeps with yours and oh how I desperately long for a better day.

For those of you who know that Allistaire was discharged from the hospital almost two weeks ago, these words must come as a surprise. What you see on the surface is so far from the full story. People constantly comment, “She looks great!” They ask, “How is she doing?” How do I answer that question? On Monday at the playground, after having climbed up the slide twice in a row, Allistaire suddenly said she didn’t feel well, she was panicked and in pain but couldn’t explain what was really happening. There was terror in her eyes. I cradled her and hoped she would calm down. Maybe she just overexerted herself a little. She cried out in anguish, “Mommy,” over and over, yet I could not understand the source of her pain or her fear. I asked my five-year old daughter, “Do I need to take you to the hospital?” as though she could answer this question. Was she overreacting? What was she feeling? She threw up in the bathroom. Well, she was on day 6 of chemo and this was the first time she threw up, so really not concerning in itself. Of course nausea can be a sign of heart failure too. I scan through all I know in my head, assessing her energy, her sleep patterns, her appetite, food consumption. Could it be her heart? She continued to freak out after throwing up and we left the bathroom. “Mommy, can I feel the sand?” I took off her sandals and gently sat her feet down in the sand at Golden Gardens. Immediately she calmed. Immediately she was fine. What was real? What is true? How much of that was based on something of significance? How much is her just working herself up? I dreaded having to relay this incident to the cardiologists. It’s a lovely day at the park, but just below the surface are constant swirling realities that threaten to steal it all away.

In the first days of being out of the hospital, Allistaire and I gorged on our sudden freedom, on sunlight and bird song and starlight and bright moon, on playgrounds and sleeping without interruption, on hours of daytime without nurses and doctors and hospital food trays. Solveig and JoMarie arrived last Wednesday evening and my heart swelled with the joy of their laughter and heads clustered together in play. Everyday playgrounds, picnics and beaches, throwing rocks into water and sun glinting off lapping waves. Caterpillars on fingers and squealing. My faced beamed with delight, with wonder at simple ordinary life. How much more wondrous it is than people realize!

You think that leaving the hospital is some signal of victory, of progress, of normalcy. And so it may be, often is, though not always. We left on May 18th, not having accomplished what we came to do. In some ways the girl who left the hospital was worse off then the girl who came to Seattle back in October. The great victory was that she successfully weaned off Milrinone. A huge accomplishment which has made way for a few options, far more than none. But her heart is far too weak to endure a standard transplant for AML which includes TBI (Total Body Irradiation). So we left the confines of this hospital after 130 straight days, her only moments outside were the 30 seconds here and there strapped onto an ambulance stretcher as she was transported to and from The University of Washington for radiation. We went straight to the playground.

For 11 of the past 12 days since she was discharged, Allistaire has been to the hospital for a variety of appointments. On Tuesday the 19th she finished focal radiation to her left leg where one new chloroma (solid leukemia) showed up on her last PET/CT scan. On Wednesday she saw Dr. Todd Cooper, her new primary oncologist. Dr. Gardner is pregnant with twin girls and so we are making the transition to having Dr. Cooper, who is the newly hired head of the leukemia department and an AML expert. He is the doctor that Dr. Pollard had hoped would come to Seattle Children’s. He has been tasked with developing a High-Risk Leukemia program for Seattle Children’s. So when Dr. Gardner asked who I’d like to have as Allistaire’s new primary oncologist, it was a no-brainer to ask for Dr. Cooper, a kind man from Atlanta who is a super smarty pants AML doc. In our first outpatient visit with him, he relayed that Dr. Pollard had called him about Allistaire to make sure he was up to speed with all the details of her medical history. I cannot tell you how amazingly cared for I feel here at Seattle Children’s. We are blessed beyond words by the team that journey’s with us. After seeing Dr. Cooper, Allistaire began seven days of Azacitadine, the same chemo she got last time.

Prior to leaving the hospital, I met with Dr. Gardner and Dr. Marie Bleakley, the transplant doctor we’ve worked with at several significant points. It was really great to have them both present for the conversation. Dr. Gardner began with explaining her reasoning for waiting so long for Allistaire to begin chemo again. I had grown frightened with the incredible amount of time since her last round of chemo, knowing the immense need to keep her in remission and being aware that she was a month beyond the traditional time of starting a new round. Dr. Gardner stressed that because Allistaire’s marrow has been so incredibly slow to recover, her greatest immediate risk is that of an infection that one: she wouldn’t have the white blood cell defenses to fight and two: that could overwhelm her heart. So finally, nine weeks after the beginning of the previous round of Azacitidine, Allistaire would begin another round. She also stated again that given Allistaire’s heart, TBI, known to have long-term consequences to the heart, was not in her best interest at this time. Dr. Bleakley went on to describe a “midi-transplant” which has much lower levels of radiation (4 centigray as opposed to 12 in TBI) and heavy-duty myeloablative chemotherapy, and a “mini-transplant” with even lower levels of radiation (2 centigray) and non-myeloablative chemotherapy but high-dose steroids. I’ll forego going into the details of how each of these work and the pros and cons, but suffice it to say, the mini-transplant is not a good option as it is intended to extend life in the old who cannot endure hard-core conditioning. It is unlikely to provide a cure and has a lot of potential for GVHD (Graft Versus Host Disease). So while the “midi-transplant” is an option for Allistaire, with a gleam in her eye, Dr. Bleakley had a different proposal.

I left the room with hope. With fear yes, always there is fear, we walk ever into black, into unknown. But with hope, with a bit of upturned grin. Dr. Bleakley has proposed that Allistaire’s best option is to participate in the WT1 trial. This is a trial through Fred Hutchinson Cancer Research and uses genetically modified T-cells which have a specially designed receptor to bind to the WT1 protein found on 90% of leukemia patients cancer cells. Normally a bone marrow test would be done to confirm expression of the WT1 protein in the cancer cells, because if it is not present, the receptor is useless. However, because Allistaire has not had any detectable disease in her marrow since she relapsed in October, they decided to proceed without this info for now. At the end of this round of chemo, she will have another bone marrow test performed and if there is disease, they can then test for the WT1 protein.

So far 17 people have participated in this trial. Of the people who were in remission going into a bone marrow transplant and remained in remission leading up to getting the modified T-cells, 100% have remained in remission for over a year that they have been followed so far, this in light of a normally high relapse rate post-transplant. There are two people who relapsed after transplant and then got back into remission and then received the modified T-cells. This is the arm of the protocol that Allistaire would fall into. I believe I was told these people are also remaining in remission. The remaining group relapsed after transplant and did not get back into remission and despite having the T-cells are not doing well or have already died. It seems the T-cells work best when there is little to no detectable disease. We will know the state of Allistaire’s disease after we get results from her next set of tests around June 16th. How I pray she remains in remission, but she has been receiving very mild chemo and has gone great lengths of time with little to no defense.

What makes Allistaire unique in this trial, is that, should she be able to get these TCR T-cells, she will be the very first child to do so. I will have to ask again if this is being done anywhere else, but she is certainly the first child ever to have this sort of therapy here (Seattle Children’s/Fred Hutch). There are many kids with ALL (Acute Lymphoblastic Leukemia) who have by now received modified T-cell therapy. But the targets are quite different. In Lymphoblastic leukemia, the cancer is in the B-cell line and CAR (Chimeric Antigen Receptor) therapy is used to destroy the cancer and in doing so, it forever destroys the patients’ B-cell line, requiring life-long transfusions of Immunoglobulin. The first child ever to receive this therapy was a little girl named Emma in April 2012 at CHOP (Children’s Hospital of Philadelphia). She has remained in complete remission since then. Seattle Children’s Research along with the Ben Towne Foundation has provided this therapy to a growing number of children with great success. People are coming from around the world for this treatment. A month ago I met a woman named Solveig from Germany who was here with her son, Nicolas, who was getting CAR-19 T-cell therapy. Allistaire’s cancer (Acute Myeloid Leukemia) is found on the myeloid line – cells that you cannot forever destroy and rely on transfusions for, cells like red blood cells, platelets and granulocytes. Thus the scientists have needed to find another way to attack these cells.

The folks at Fred Hutch have been incredible. I am amazed, honored and humbled by their passionate desire to make a way for Allistaire to participate in this trial. Through conversations with Dr. Bleakley, Dr. Dan Egan (the principal investigator on the trial) and Dr. Phil Greenberg (the head of the lab who has designed this therapy), it is so abundantly evident that they see Allistaire as an individual and they see her as the child that represents the children who are also in desperate need of this therapy, children who have run out of options, children “destined to die of their disease.” They have re-written the protocol to accommodate her, to make way for future children. The original weight requirement was 30kg because of the numerous blood draws required for testing. They worked it out to reduce the limit to 15kg, Allistaire was 17kg at the time they made this change. Additionally, because this weight change equals treating much younger patients, they went through a lengthy, involved process to set up approval to give this therapy at Seattle Children’s. Up to this point, the youngest patients have been in their teens and were treated at The University of Washington where adults are treated. They have worked hard to make a way through for my girl.

On Sunday evening, May 17th, I was delightfully honored to be invited by Julie Guillot to the Premier Chef’s Dinner, a fundraiser for Fred Hutch. As I have mentioned before, Julie and her husband, Jeff, lost their son Zach to a complication of his third transplant for AML. At that time they were helping fund the research that would create T-cells that would give Zach another measure of defense against AML. When Zach died in February 2014, Julie’s zeal and wild fiery passion to bring an end to AML and better treatment options, only intensified. When Allistaire relapsed in October 2014, she invited Allistaire and I to a little party for Dr. Greenberg’s lab to celebrate the $1.7 million dollars Julie and Jeff had helped raise for his research thus far. It was at that time I first met Dr. Greenberg in person and introduced he and his lab staff to Allistaire. Jeff and Julie were the challenge fundraisers for the fundraiser on May 17, 2015, having pledged to match up to $400,000 of money raised that evening. In making this commitment, they were given the privilege to direct where the funds would go. Their whole motivation was to see the immunotherapy through Dr. Greenberg’s lab flourish and accelerate. By the end of the amazing evening, $1,280,000 was raised to accelerate targeted cellular immunotherapy research at Fred Hutch. I had the joy of standing up and representing the hopeful first child to benefit from his research. Dr. Greenberg spoke to me on two different occasions during the evening, each time with multiple hugs initiated by him. You could see the eager joy and hope in his eyes. It was a wondrous thing to stand alongside a man who has dedicated several decades of his life to this research, generous donors, a fellow cancer mom who lost her son – for whom this therapy is coming too late, and I, the mom of a child who is desperate now and who needs this treatment immediately. The full circle was there – scientist, patients, donors.

Doors are opening but still the tension remains high-pitched. There is the illusion of normalcy, there is light-hearted laughter on the surface, but there is a mighty undercurrent, ever threatening to pull Allistaire down, deep into the suffocating dark. First financial approval for the trial was required which was confirmed by Blue Cross Blue Shield of Montana this Wednesday. This allowed the Unrelated Donor Search Committee to initiate their part which is to request Allistaire’s original donor to be contacted and for a request for consent to use remaining donated cells for this trial. At this point, unlike the CAR t-cell trials, the WT1 trial must use bone marrow transplant donor cells. While Allistaire is not in a position to get a transplant at this time, she thankfully does have cells stored at Fred Hutch from her original donor from her transplant in June 2013. Extra cells are stored for two years at no charge and then you have the option to pay to have them stored. This June 18th, will mark two years. I pray this woman can be found quickly, quickly and that her heart will be moved again to give, this time solely of her consent. It feels sort of terrifying to know that Allistaire’s one shot is dependent on a woman on the other side of the world, but then again, she gave once in a much greater way, we so hope she will help make a way through for Allistaire again. If we can gain her consent, processing of the cells will begin and takes approximately a month and a half. Speed is of essence. The T-cell therapy much be coordinated with Allistaire’s chemo schedule. It is my great hope that there may be a way for Allistaire to get these cells prior to needing to begin another round of chemo.

This therapy could be Allistaire’s cure. That would be BEYOND AMAZING!!!! And if not a cure, we pray the T-cells will buy her more time, time for her heart to heal, time for her heart to gain strength to enter the next battle of a second transplant. What’s so wild to me is that Allistaire would be inpatient for ONE day for this therapy. ONE DAY!!!! And this T-cell therapy does not result in the intense cytokine storm response as it does in the CAR T-cell therapy which puts most kids in the ICU for some period of time. No one in the WT1 trial has had to go to the ICU. In fact, Dr. Gardner told me that Allistaire would not be able be eligible for the CAR t-cell therapy because of the extreme dangers it can pose. For the WT1 trial, they would ask her to stick around for a few weeks for some blood draws and observation and then remaining blood tests could be done at home and simply mailed over to Fred Hutch. It all seems too good to be true. What a wondrous world it will be when this is the way cancer treatment is conducted. Can you even imagine?! I must highly, highly recommend the documentary, “The Emperor of All Maladies,” by Ken Burns! It is based on the book of the same name which is also extremely fascinating and worth reading. It is simply thrilling to see how far cancer research and treatment has come and the heightened hope that immunotherapy will change the course of how cancer impacts our lives – for one in every two men and one in every three women who will get cancer at least once in their lives.

I am weary, so utterly weary. But what choice do we have but to walk on? And we do. We walk forward, giving thanks for so much blessing. Sometimes it feels like there being a way through for her is an utter impossibility, but then I am reminded of how many “impossibilities” have come to pass, how the insurmountable has been overcome. My yearning for her life is like a burning fever that never lets up. Every moment is on high-alert, racing through the myriad of questions to try to determine how she is doing, to assess what is going on for her. There are now so many interwoven layers of medical complexity and reality. There is cancer, there is heart failure, there are medications (13 different ones every day – 26 doses), there is being deconditioned by months lived in the cramped confines of the hospital. I see her on the play ground and I watch kids younger than her charge a hill or climb with confidence. She tires quickly, she is fearful. Her legs hurt. Is it cancer on the move? Is it lack of blood getting to muscles? Is it simple fatigue brought on my muscles that have not been asked to do much in so, so long? Is she nauseous? Is it from chemo? Is it from the magnesium she must take because her Lasix makes her waste it, magnesium that causes tumultuous abdominal cramping? All her pain signals are mixed up so that she just finds herself in a frenzy of discomfort, in a frightful maze desperate to get out but with no clear direction.

Leaving the hospital balloons the craving for normal, it makes you think you should be normal, all the standards shift and you see your child not as one among the many other sick kids but among the normal. At the same moment that I am delighting in the warm day and Allistaire playing in the sand, going back to the lake shore to fill her bucket again, I am aware of the dangers in that sand, in that water. I’ve put parafilm on the end of her tubies and tucked them tight into her swim suit. She wears her sun hat and is lathered in sunscreen. Her medications make her more sensitive to the sun, more likely to burn. I’d like to avoid skin cancer. She doesn’t know what to do when the other little girl approaches silently to play with her and share her toys. She is fearful and defensive. My heart sighs knowing how little interaction she’s had with other children, how to navigate such situations. In her cardiology appointment the great nurse, Jason, calls her precocious. Yes, yes, she seems to be quite articulate for a five-year old. There are ways that her deficits are glaring and there are odd ways that she has walked so much further in life than the vast majority of five-year olds. What I know is that I love her dearly, I long to keep her safe, to see her have long life.

I pray to God, I seek to be reminded, imbedded in the truth of His infiniteness. I ask Him to remember that I am finite. I ask Christ to pray for me as He prayed for Peter, that my faith would not fail (Luke 22:31-32). I ask Him to help me to lift my eyes, to take in the long view, to help me in this brutal moment, these series of endless days, in this tedious fight against cancer, in this relentless tumult to see His face throughout all these circumstances. We go to the playground. We look for the first stars at night, our necks craning back. Alllistaire points eagerly at the moon, not framed in the hospital window, but in the vast expanse of the evening sky. We listen for birds and bend our noses to flowers. Our feet follow little paths through marsh land and cat tails, spider webs bright in the afternoon sun. We live, we delight. We go to the hospital again and again into little rooms with blood pressure cuffs and vials of blood that tell of the world within which eyes cannot see. We walk forward through this intertwined life, messy, unclear, wondrous, of such enormous precious value. We give thanks to the Lord and ask for more.

Lyrics above are from J.J. Heller’s song, “Keep You Safe.”

Feb3

Numbers

Posted on February 3, 2015 by Conglomeration of Joy

Standard

This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead. I am daunted by the incredible number of details that all have to fall in place. It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails. They may open. They probably will. Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us. The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut. A few comments in recent days have opened my eyes to just how serious her typhlitis was. On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice. When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery. I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in. When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen. She sure did a good job of not letting on about how precarious her condition was. Apparently, had her bowel perforated, a likely uncontrollable infection would ensue. This is in fact how my grandmother, Lillian, died. She died fast. I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died. I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine. Thank you Father that you preserved her life. Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes. Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart. Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for. Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid. They are doing everything in their ability to ease the burden on her heart. As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.” She has continued on Milrinone. Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning. A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it. Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect. “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing. We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach. It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN. It is very possible she will get a feeding tube given how small her stomach will have shrunk. The feeding tube would allow constant low level food. This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed. Oh well, something else new to learn. Her blood counts remain in decline. Today she is getting platelets (which she seems to need every 2-3 days) and red blood. Her white blood count remains zero. Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again. I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed. Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th. I will have an Arrival Conference, the next day on the 18th. The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant. She will likely have a bone marrow test February 19th or 20th. Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th. Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th. This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away. She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa. There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away. This whole process is taking a month longer than I had ideally hoped. Yet this may be for the best as it gives Allistaire lots of time to recover. Her heart, marrow and gut have been severely injured. This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad. The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week. This time will also allow for finalizing details of payment for transplant. Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them. It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials. This boggles my mind. Her last transplant cost $1.1 million. Sometimes I shudder at what Allistaire’s care has cost. I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries. It is not fair that so much is given to her. The Super Bowl helped add a little perspective. Thirty seconds of Super Bowl advertisement time costs four million dollars. That’s about what it has cost to keep Allistaire alive the last 3 years. She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time. What a world.

Another steel gate is in the hands of the donor herself. She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant. She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents. There is not one single thing in the universe I can do to impact her decision. In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing. So many gates barring the road before us. Most of this post was written yesterday morning long before results from Allistaire’s echo came in. The day ebbed by at a painfully slow pace. I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart. Yesterday the weight of sadness lay heavy. Day became evening and then night with still no word. The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results. Corrine, the resident, came in just before 9pm beaming once again. She made the cardiologist repeat himself several times to be sure she heard the number right. “The ejection fraction is 45,” she said with nearly uncontainable smile. FORTY-FIVE??!!!!! “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy. God, who are you? Really who are? I know your face is just beaming, beaming with joy, with delight to bring us delight. So what you’re saying, Lord, is that you have her in your hands? What you’re saying is that this is not hard for you? We need 45, well here’s 45. Thank you Lord, Thank you. I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here. This is not how I envisioned this round of chemo going. The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us? This seems too easy. We never have it this easy. Three weeks just to hang out and wait for her counts to come up? Well, show me what you want this time to look like.” Two days later she was in the ICU. Today was a delightful day of progress. The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents. Then through immense protest and fear, the IV in her foot was removed. These days she is literally terrified if you come near her with anything. She knows she gets a shot every night and has had many painful experiences in the last two weeks. Even her bath elicited cries of, “I’m scared, I’m scared.” It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny. Lastly, we changed her dressing. I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I. This is Solveig’s view on Allistaire’s world. It sobers me. I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit. My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

Jan26

ICU Delirium

Posted on January 26, 2015 by Conglomeration of Joy

Standard

Four out of four walls are windows. Three sliding glass doors. Sounds barrage within and without. The teenager next door is coughing and playing video games. It’s 3:30am. The tiny baby on the other side alarms again and again. Nurses at their computers just outside, chat and laugh. Who decided the little key code lock for the med cabinet needed to produce a sound with each button pressed? The Purell dispenser…is that an abbreviated sound of a chain saw or weed whacker? Pumps alarm. Releasing the blood pressure cuff from the arm scratches the air; ragged. Paper and plastic crackle the night. Swish of the isolation gown with every movement. New med, program the pump. The beeping of buttons baffles. Why? Why must every thing beep?!!! Auditory assault. Breathes come sixty, seventy times a minute and with each the rhythmic moan or is it a whine, perhaps a grunt?

Her arms swing out wide, straight up into the air and eyes flash unseeing. “I thought a glass bowl was falling,” she exclaims and her eyes shut again almost immediately. Back to the grunt whine moan. I push off the blanket and then pull it this way. I roll to face the wall, seeking refuge from the incessant sounds. But I know, I know if I sleep on this shoulder I will wake with a headache. Too hot I think. Turn down the thermostat and reinstall the earplugs and eye mask. There’s something unnatural about sleeping in the presence of someone bustling about, mere feet from their activity while you strive to enter that state of finally letting go of the details of the present. I lay there and my mind goes straight like little magnets to those endless numbers. What is her CRP (measure of inflammation)? Her BNP (measure of heart distress) went down from 2350 to 1200 something to 950 ish. When are labs? What time is it? A normal BNP would be 0-90. Labs are back and her’s has bumped up to 1700. Alarms blare and I whip on my glasses and study the monitor. Oxygen saturation is 88 now 87, 86. Is the pulsox on correctly? Try a different toe, a finger maybe? And I look up at the top green number flashing in the 170s. How is her heart ever going to heal if it will never slow, never ease? What will the Heart Failure team say about that BNP that’s dropped? I despise that name, Heart Failure. Can’t they think of a more positive name for their team? Stuff the earplugs down tight and slowly, eventually enter that place where consciousness drops away and maybe the numbers can’t sneak in through the cracks.

Her breathing picks up and she calls out panicked, “I’m gonna throw up!” With speed and attempted gentleness I thrust her back upright, hand pressed against her back hot and soft. I pull her into the crook of my arm, holding the throw-up basin with one hand and the other wraps around to the left stroking her arm. My face rests atop the heat of her cranium spiky and soft from one lone hair left here and there. All my cells cry out for sleep and I tell them to hush as she gags and strains. Over and over I rise to comfort her and cycle back round seeking reprieve in sleep for myself. Three broken hours of sleep and my alarm declares morn at 6:30 which happens to coincide with the unexpected swoosh of three gown clad surgeons here to assess their wee patient.

I am flustered at how flustered I was with the night. But it’s like the movie “Groundhogs Day,” where you simply relive the same day over and over, some endless cycle you cannot seem to escape. I feel a bit crazed. In rounds all her “systems” are discussed and once again the suggestion of doing another CT comes up and I resist. My mind has had hours and hours to review her episodes of pain, look for the details, clustering and dissecting. I hover over these now 10 days in the ICU, contemplating, considering each angle. Here’s what I got – Days 1 – 3 her pain fairly steadily decreased. However, with the first dose of granulocytes, her pain once again ramped up with episodes of intense pain that required boluses of pain meds to even bring moderate relief. The fevers began, sometimes a whole day at a time with unbroken fever despite Tylenol. Other days the fevers were intermittent. In the past few days, while the fevers have continued, the boughts of intense pain have reduced in frequency. More often now, if she has an episode of intense pain it yields gas, throw up or most often, stool. From my vantage point, she is no longer having generalized episodes of intense pain but rather a simmering incessant discomfort and agitation. She never seems to really sleep. She startles and whimpers constantly in her sleep and breathes rapid, shallow breaths. The idea of needing a CT is once again tabled, at least for today. For the first time I hear the term ICU delirium, but the conversation rushes on before I get a hold of this word and whether it was meant in jest or truth.

“I’m scared. I’m scared,” she cries frantic with heaving sharp breathes and trembling head. “I’m afraid my face is going to fall off the ceiling. I’m afraid to look up. I’m afraid my face is going to fall off the ceiling.”

Uh, what? What in the world does that mean? She gets herself SO worked up. She hears the resident say she’s going to order a chest X-ray and she begins amping up her terror. The sight of the portable X-ray outside the door only intensifies her fears and agitation. When the X-ray plate is slid behind her back she screams, literally screams with mouth wide, Owie, Owie, Owie!!! She is becoming more and more irrational. Before the nurse even flushes her IV she assumes it will hurt and pulls back.

So I don’t really understand the first thing about it, oh wait, no I do. I do understand the first thing about ICU Delirium. I’ve started to experience it myself and I’m not even the one in pain and sick. Allistaire has hardly had a solid hour of good peaceful sleep in the last 10 days. The number of intrusions on her body is literally incalculable. Apparently this phenomenon is legitimate where the brain, so deprived of sleep and so disoriented by medications and interruptions literally loses its hold on reality. I have seriously no idea what she means that her face might fall of the ceiling. But the poor girl is coming undone.

We are all trying to assess what is real and true for Allistaire and how to meet her needs most effectively. And by “we,” I mean her nurse, the ICU attending, the fellow, the resident, the Infectious Disease Team, the Heart Failure Team, the Hematology/Oncology Team, the surgeons, the pharmacist, the nutritionist and of course myself. Throw in the mix the sweet music therapist, Betsy, the art therapist, Rosalee, and the occupational and physical therapist – all of whom, literally all of whom, have seen her today and do most days. Every single day her meds are assessed as are her fluids in and out and her pain. Every single day her blood counts, electrolytes, cardiac function, liver function and kidney function are examined. Her blood pressure, temperature, respiration and saturation are tested, endlessly it feels, over the course of each day and night. A fever brings need for temperature checks every 15 minutes. Conversation after conversation re-addresses each topic with fine tooth comb, looking for clues, for missed signs, for hope and for doom.

I am exhausted and maybe more so, just weary of it. More so is she. So what are we to do? We’ve requested we be moved to the 6th Floor PICU in Forest where the rooms are identical to our room one floor up on the cancer unit. These rooms offer such amenities as 2 solid walls, one window to the outside and a sliding glass door that actually closes all the way. There is a curtain that more effectively blocks out the saturating light of the hallway and a second curtain that provides a small bit of privacy for the parent. Another handy joy is a bathroom you can use in your own room, rather than the current scenario of having to put on your shoes walk through two sets of doors and then around the hall and a request to be let back in. So not only would a room on the Forest PICU offer more quiet and dark, but it would be familiar, it would look just like home. And maybe these little details would help my little love return to reality and herself a bit.

In an effort to ease the burden on her heart, her fluid balance is reassessed numerous times a day in an attempt to determine if she needs more Lasix to pull off fluid. So while Allistaire is a bit crazed, in some pain and breathing a little inefficiently, the major issue that’s risen to the top is the condition of her heart. While it is still not ultimately clear if the fevers and pain can be decisively linked to the actions of the granulocytes, it seems likely that her typhlitis is on the mend and will really have the best chance to do so once her marrow starts to produce its own white blood cells. Today is day eleven since her ANC hit zero. In the last round of chemo, it took fourteen days at zero before her marrow started to rebound and begin producing cells. It may take longer this time since her marrow had already been knocked down hard so recently. On the other hand, the GCSF shots which she gets each evening, may speed up her blood count recovery. Regardless, while the granulocyte transfusions are likely helping her heal, the real progress will be seen once her marrow recovers.

As far as I understand, the condition of her heart is being assessed clinically, and by the echocardiogram and her BNP (Brain Natriuretic Peptide). To assess her heart clinically, the team listens to her heart with the stethoscope, feels pulses and assesses profusion by feeling if her hands and feet are warm and if they have good capillary refill. Her echocardiogram provides the cardiologists with a lot of information like whether or not the heart is dilated and what the ejection and shortening fractions are. After her last round of chemo, her heart looked awesome with an ejection fraction of 65 and a shortening fraction of 32. Her last two echocardiograms which she’s had during this ICU stay, have both showed a substantial drop in heart function with her ejection fraction down to 28 and her shortening fraction at 18. Not only was she put back on the Milrinone, but the dose was doubled. Apparently, Milrinone is an excellent heart med but one that can only be given in the setting of the ICU. It is likely that the cardiologists will want another echocardiogram sometime in the next several days which would help them to decide what to do with the dosing of the Milrinone. The timing of this will probably be informed by how her BNP is trending. Normal is 0-90 and at first testing four days ago, hers was 2350. It then dropped quite nicely for three days but is now back up. We will see what the next few days bring. Of course our great hope is that this is an acute process that just needs more time to resolve, but resolve it will.

I had intended to give this update on transplant after a great phone call on Friday the 16th, but this whole ICU business sort of took the spotlight. Back when all my attention was focused on those doors preceding transplant, a few conversations here and there brought wonderful news. Dr. Bleakley, the transplant doctor at Fred Hutch who is heading up the clinical trial we so hope for Allistaire to be on, has gained the consent approval of the German version of the FDA along with the go ahead from the FDA itself. Apparently, if you don’t hear anything from the FDA in the 30 days from your request, you are free to proceed. Two great doors have swung open.

The other issue with the transplant was the question of whether or not the cells would be viable once they arrived in Seattle to undergo the naive T-cell depletion which is what makes this transplant unique from the standard protocol. Knowing that it was possible the cells would not last long enough to undergo this manipulation, it was possible that the cells might simply be transfused as is done in a standard transplant. The standard transplant and clinical trial transplant have different conditioning chemos. The standard transplant uses Cytoxin and the trial uses Fludarabine. Fludarabine is the first chemo that Allistaire had with her first relapse. The Fludarabine didn’t even touch her leukemia. So my fear was that if we chose to go forward with the clinical trial transplant and the cells were unable to undergo the manipulating, we would have essence chosen a transplant with Fludarabine over Cytoxin, knowing Fludarabine hasn’t destroyed her leukemia in the past. I was relieved to hear that the purpose of the conditioning chemo is not for its anti-leukemic effect, but to suppress the host (Allistaire) immune system enough to make way for the donor cells. Turns out Cytoxin isn’t especially anti-leukemic for AML either and is again simply being used to suppress her immune system so that it doesn’t attack and destroy the donor cells before they can get established in her body. This means that while the chemos differ for conditioning, their purpose and effectiveness are on parr. Additionally, Dr. Bleakley is now taking a more positive stance on the idea that the cells will be in good enough condition to undergo the naive T-cell depletion. Her optimism is likely impacted by now knowing who exactly her donor is and thus where exactly they are coming from. A donor from a “major center,” like Frankfurt would allow for a quicker turn around time than a donor from some small town or country outside of a major transportation hub.

So who is Allistaire’s donor? Oh how my heart leapt with joy when I heard that there is a 28-year-old woman who is O positive and CMV positive that has committed to the requested time frame for transplant. She’s real! It’s so hard to fathom, to really get a hold of, but she’s out there and she’s Allistaire’s hope for a source of blood cells devoid of disease and replete with life. Day +28 of this round of chemo is February 5th and she is currently scheduled to be transferred to the BMT (Bone Marrow Transplant) service on February 17th. Assuming the standard 2 week testing period, conditioning would start on about March 3rd with about four days of radiation followed by 2-3 days of chemo. The actual transplant would therefore occur about March 10th. Of course this is all dependent on her ability to recover from this acute assault on her heart and gut and be in a position to move forward with transplant. My eye is ever on every last detail of the present and simultaneously it is fixed on that ultimate goal of transplant. Perhaps this adds to why I feel slightly crazed myself, the stakes are high, as high as they can get really.

The last update on transplant is that apparently the awesome law passed in Montana almost exactly two years ago which was supposed to bar insurance companies from denying cancer patients clinical trials, is according to the financial counselor, “swiss cheese.” The insurance companies have found the loop holes and do what they can to avoid having to incur costs. Kira, the SCCA (Seattle Cancer Care Alliance) insurance coordinator tells me that while the insurance companies have their way to get around things, so do the SCCA lawyers. Nevertheless, Kira, our financial counselor Carrie and our social worker Ashlei are all working any angle they can to ensure that Allistaire’s transplant gets paid for. Currently we are applying for some sort of spend down Montana Medicaid program and Montana Social Security for Allistaire. I will spare the details but the final word from Carrie is that if all else fails, Seattle Children’s Hospital will pay for Allistaire’s transplant through their foundation. I could not help but cry when she told me that. How utterly incredible that ultimately we need not stress over how this transplant will be paid for. Of course it is my hope that insurance or Medicaid will cover the cost but it is such a relief to know that one way or another, cost will not be a blockade.

So, so many details. So many facets of an ever-changing picture to constantly be reassessing. Right now so much of what is before us is simply endurance, simply being patient with the need for time to accumulate. We live ever in a state of delayed gratification, ever pressing on because at the core, we believe it will be worth it. On the other side of this is something worth enduring for, really, worth suffering for. This seems to be one of the major themes God continues to impress upon my heart – endure for the joy set before you. Endure. Joy is coming. JOY IS COMING! Endure.

And there is my sweet Christ, my compassionate, merciful high priest, yielding before the God of the universe, taking Him at His word. Christ endured the cross for the joy set before Him. I seek to endure these days because I am looking ahead. I fix my eyes on Christ, the author and perfecter of my faith. And all the while, I know that He sees me and He is carrying me, even through ICU Delirium.

Jan9

All together different

Posted on January 9, 2015 by Conglomeration of Joy

Standard

Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath. Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand. The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence. And so it is, we reenter the world so strange, yet so familiar it has become beloved. There a whole cast of friends surround us and an altogether different language is spoken. Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.

We all know what we’re doing here. We’ve come to slay, to annihilate, to wield weapons of mass destruction. We have come to destroy a destroyer. Ushered down the hall to the very end, we enter our new room, Forrest 7A:308. This is the MIBG radiation room. The room is lined with lead. Two doors, one lead, protect those on the outside from what typically takes place in these few square feet. It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide. So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease. First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.

I slept well last night and was simply ready to get this show on the road. This round, this entrance into the constraints of the hospital this time feels all together different. I walked through that door with hope. There was none of the dread of the last round of chemo. It worked and there is the hope and expectation that this combination of chemo will continue to do the same. Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come. Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s. Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.

So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us. Let us make the most of these days! Let them fill and swell with all the Lord sees fit. Let us seek diligently to love each face that enters this room. Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us. God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness. We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose. Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will! But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow! That is my joyous hope. This is what invigorates my spirit. Let me not deprive myself and others of the bounty that He intends!

For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire! You know what I want to see God? I want to see you raise the dead! I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness. That is the miracle I’m asking for! Do you hear me God?! I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ. Father, who am I that I should lay down my life, what is my life, but Lord I do, I do! I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence. Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are. And Father, show me more of yourself, more, more! I want to see new facets of your face, new angles of light, even shadow. Lord, you are all together beautiful. May I greet each day with this deep, swelling joy.

It has been nearly three weeks since Allistaire and I left the hospital. I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break. It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty. Sten and Solveig came out for a week over Christmas and we had such a great visit. The girls played and played and played and giggled ceaselessly. They have such a better time interacting outside of the hospital, without all the constraints. Uncle Jens and Aunt Jo also came out for a visit from Bozeman. We made the most of good weather and went to various play grounds as often as possible. Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents. All in all it was all we could possibly ask for with our time out of the hospital. It wasn’t home and that’s a bummer, but boy did we love the freedom.

This is our second 39 day round of chemo, identical to the last one. She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering. Twenty-eight days is the standard estimate of how long this drop and rise process takes. Day 28 will be February 5th. There’s nothing magical about February 5th, it’s just an estimate. Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG. I will include below some pictures of her last PET/CT. I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan. The computer overlays/combines the CT and the PET scan giving more complete info. And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view. The brighter the image on the PET scan, the more metabolically active is that location. There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected. They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas. I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan. I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT. They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan. I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.

Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy. I am not sure if there is additional testing that needs to be completed. Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs. Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely. There may also be some period of time where they want her blood counts to recover more. I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule. I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing. She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books. It is exciting to step nearer to that mighty goal of transplant!

Dec21

Juicy

Posted on December 21, 2014 by Conglomeration of Joy

Standard

Ours is a sanitized fight. I have only ever seen two insects on the Unit. One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass. The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines. How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth. The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering. The light is bright with cheery images on the walls and flashes of exuberant color. Countless groups come to the hospital and to Ron Don to make the season joyous. Gifts flow in and in and in. Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire. Everywhere love and support. Ours is a fight with so many allies.

In anticipation of the movie, “Unbroken,” coming out, I am determined to read the book first. Much to my chagrin, I have not read much of history and this account of World War II in the Pacific gives me a much enhanced admiration and appreciation for our veterans. How they faced the horrors common to war is awe-inspiring. Their fight was poorly financed, poorly equipped and fraught with terrors I cannot begin to grasp – exploding flesh from countless weapons, disease, lack of medical care, sharks, exposure, starvation, torture. In the same way that we press forward, unwilling to loosen our grip on life, they endured, they strove to hold onto life. When Allistaire was first diagnosed, I kept thinking, if I was a Haitian mother, I would simply have a dead child. There would be no fight. There would simply be a swift succumbing to wretched disease. So it has been throughout history and so it is in countless stories across this earth at this very moment – fights for life – lives cherished and infinitely valuable.

I went to bed Thursday night with the thought that we have been given SO much. It is privilege to even have the opportunity to fight alongside Allistaire for her life. Few have been given so much with which to battle, to persevere. Who are we to have been so blessed? The thought of what people must endure on this earth is utterly heartbreaking. This fight tears constantly at my heart and yet, it is gift. It could be so very different. I went to bed more at rest in my spirit. I woke less and still woke with heightened anticipation, but not terror. I know the Lord is good and He sees the whole expanse while my sight is limited to a ridiculous degree. Who am I to say what is best and thus what tomorrow should bring? I keep handing her over to Him, entrusting her to Him, entrusting my heart and my life to Him. Do as you please Lord. You are my whole heart and it swells with longing for you Lord. I live a dual anticipation – what will come to pass with Allistaire and looking for what the Lord will do. The question of “why,” has never dominated my thoughts. The earth and all that is in it is broken and it longs with eager anticipation for the coming of Christ to fulfill all His promises and restore and redeem. The question of why rests far more on, “Oh Lord, why have you brought this wild, wringing sorrow into my life? You are not an arbitrary God. You are a sovereign, beautiful God, so what is your good intention for this road you are having me walk? Why us, why now, why here? Who will you put in our path? How can I walk these halls and these days with face radiant because I HAVE seen you?!” I don’t believe in accident. I ask, “why,” because I am on the lookout for the beauty of what the Lord will raise up out of these days.

I actually experienced rest Thursday night and woke Friday once again in prayer, once again asking the Lord to orient my heart to Him – that He would fill my vision. He has provided so abundantly, will I curse Him now if things do not go as I desire? He is not a fickle God. Is He not still the same good God when blasts appear on the lab sheet, when Flow Cytometry reveals an ugly diseased marrow? I rose from my surprisingly comfortable couch bed to go and find our nurse, Nate, to discover what the Lord gave this day. Allistaire’s ANC was 230 and there were zero blasts. This meant a green light for her bone marrow test and ecstatic joy. My joy was compounded when the doctor who did Allistaire’s bone marrow brought out a bright red, juicy sample of bone marrow to show me and tell me how good things felt in there, how simply good the sample looked. On Friday they did a bi-lateral biopsy and aspirate, meaning they took sample from both hips in order to ensure sufficient sample given how hard it was to achieve last time due to the fibrosis. Friday’s sample showed a changed marrow. So, no blasts, rising ANC, platelets and hematocrit, a juicy fabulous sample of her marrow, lots of energy and no pain – as Dr. Gardner said, we have “guarded optimism.”

After I put Allistaire down Friday for her nap, I went to Ron Don and laid down, intending to read, “Unbroken.” With lights of the room blazing around me I allowed myself to succumb to sleep. Three naps in one week – what in the world? A year could go by and I would not have typically had a nap. Naps don’t work for me. But an incredible exhaustion settled me flat on the bed and I dozed. Perhaps I should be packing clothes for the next few days, but who could know which way the next few days would twist and turn. I met with Dr. Gardner on Thursday afternoon to discuss three things: what was necessary to move forward with transplant, Denver and discharge.

As Allistaire’s ANC rose over the past week, the team started talking about discharge. One might think that I should be excited about getting booted from the hospital but in fact “out there,” is a terrifying world I’m not excited to take Allistaire into – especially not now. The docs pointed out that she has an ANC now which means she has a few lymphocytes (white blood cells) to fight illness. Yeah, but perfectly healthy people with astronomical ANCs are getting taken down left and right with the flu and various other horrid colds and such, not to mention the Hand, food and mouth disease and Whooping cough going around Montana that could carry itself in the backs of our family. Now more than ever, it is utterly essential to protect Allistaire from getting sick. If the chemo has miraculously succeeded in getting her disease knocked down enough to move forward with transplant, then a very precise timing begins where two very separate lives must intersect at exactly the right moment. The “conditioning,” (chemo and radiation), for transplant is timed in alignment with the donor prepping for the removal of their stem cells. Cells are living organisms and can only survive so long outside the body and as conditioning begins for Allistaire, the process of permanently destroying her bone marrow has begun. So, it is imperative that nothing stands in Allistaire’s way of walking each carefully planned step forward to transplant if we are given that option. Something like RSV (a respiratory virus) is actually fatal in transplant. She won’t have time to “get over being sick.” The thought of leaving the hospital means she and I will be trapped alone in our room at Ron Don. She can’t be in the communal areas and in order to get food I would have to take her with me to the grocery store which is a hot-house of hacking, sick people and kids. Our best option is to go very early in the morning or late at night when we have a chance at steering clear of the sickos.

Then there was the issue of Denver. So the bummer news is that the initial findings of the study, in the adult patients anyways, is not too impressive. Only about 25% had a good response. As Dr. Tarlock later told me, these aren’t such poor statistics for a single agent and likely this drug will be combined with other therapies in the future to have a far greater effect. The truth is too, that this trial is Phase One, meaning they are only testing for safety, not efficacy. The point being, it doesn’t seem worth it to send Allistaire to another state, another hospital, another group of doctors for a drug that isn’t a likely hit for her – unless there are no other options of course. Dr. Gardner was going to see if she could contact the principal investigator and get a sense of how the pediatric patients were responding, as it could be quite different from in the adults.

By the way, here is yet another plug for pediatric cancer research – did you know that the NCI (National Cancer Institute) only gives 3-4% of its annual budget to funding pediatric cancer research specifically? Here’s the problem, far fewer children get cancer than adults so it is not in the pharmaceutical companies financial interest to fund research to treat pediatric cancer. So really, kids only get what eventually might trickle down to them from cancer research in adults which means much more time passes before there are any breakthroughs for kids with cancer. Additionally, there are a number of cancers that only children get, like neuroblastoma. Even AML, which is the most common form of adult leukemia, most likely has different origins and characteristics for children than in adults. When a child is treated for cancer, their body is rapidly growing and every organ from the heart to the liver and brain are being poisoned from the chemotherapy and radiation. Chemo targets the fast growing cancer cells. In kids, all the cells are growing far more rapidly than in adults which means their healthy cells are much more vulnerable to the onslaught of chemo and radiation. When an adult is cured from cancer, their life has been extended by and average of 15 years. When a child is cured from cancer, their life has been extended by an average of 71 years. So if the NCI won’t fund pediatric cancer research and the pharmaceutical companies have no incentive to do so, it means the real hope for children with cancer rests with the private donor. Allistaire has benefited directly and significantly from research at Fred Hutch which treats adults as well and I will continue to root for them and seek to raise money for what they are doing, but there is also a place for giving directly to childhood cancer research.

Okay, back to the most significant issue at hand – what reality will enable Allistaire to move forward with transplant? What must be true from the results of the bone marrow aspirate and PET/CT? Dr. Gardner said the most important piece is that the disease in her marrow must be quite low. The less there is in her marrow, the more likely the transplant is to succeed. So while the transplant allows the patient to not be in remission, it is still far better that they are. She said that if the pathologist looks at Allistaire’s sample under the microscope and she is morphological remission which is defined as 5% or less disease (this is the lowest detectable amount with the microscope), then she will be in good shape to move forward with transplant. Of course there is also the issue of her chloromas (locations of solid leukemia). One would presume that if the chemo worked in her marrow, it would do the same in the chloromas but apparently tumors have their own micro environments that can allow and promote cancer cell growth that doesn’t take place outside of them. Only the PET/CT will tell the truth about what’s going on inside, but so far she has not had any pain which is a good sign. Neither Dr. Gardner nor Dr. Bleakley are super concerned with the chloromas simply because they can be treated with focal radiation if necessary. Of course this is not optimal as every part of the body that is exposed to radiation is more prone to develop cancer in the future and can be damaged or deformed. I am sure that an increase in the number or size of the chloromas would require quite a discussion, even if her marrow was in good shape.

I left my time with Dr. Gardner with the plan that she would see what she could find out from Denver, and that if her marrow looked good, we would be discharged from the hospital and if not, we would stay in. So what’s the point of packing I thought. I lay in a flattened, utterly still state. The phone rang with that attention grabbing number ever emblazoned into my brain: (206) 987-2000. My heart jumps every single time that number shows up on my phone. Even when all has been well that number gets my heart thumping and dampness of the palm. It was Dr. Shoeback, the attending doctor at Children’s. “The pathologist can see no cancer cells in Allistaire’s sample.” WHAT? Utter ELATION!!!!!!!! I could not believe my ears! Allistaire is in morphological remission and only the possibility of a horrible PET/CT stands in her way of moving forward with transplant. After the exhausting torture of her last relapse, I could not have imaged this being possible. But it worked!!!!!! On Monday we should have results back from Flow Cytometry, but that will only give us a number below 5% and while it would be awesome if it was zero, it doesn’t need to be any less than 5% to be given the open door to transplant.

On Monday at 1:15pm, Allistaire will have her PET/CT scan and by the end of the day, I should hear from Dr. Gardner with the results. Of course a plan can’t really be formulated until all the data is in, but the AML docs and Dr. Gardner are discussing with Dr. Bleakley what would be the best plan for “bridge chemo.” It is necessary to have some form of treatment between the end of this round of chemo and conditioning chemo because you ethically can’t get the donor moving forward with their steps until you know you really can have a transplant. By the way, while Allistaire has no U.S. donor, Dr. Bleakley is trying her best to exhaust all possible options for Allistaire. She is in contact with the German version of the FDA to get approval on their end to get a consent process with the overseas donor to manipulate the T-cells. I think the idea is that this is an additional step taken with the donor’s cells and because the donor’s cells are technically part of the donor or owned by the donor, they have to give consent. If you want a super interesting read on this topic, check out, “The Immortal Life of Henrietta Lacks.” If approval is given through the German system, Dr. Bleakley can then seek out approval from the FDA. Even if all this approval goes through, there is still the issue of the timing and age of the cells given the additional time that would be required to process the cells in Seattle. If the donor is from a “major center,” in the German system, this increases the likelihood that the quality and timing of the cells could work. Dr. Bleakley says that ultimately it will be up for Sten and I to decide what we want to do. It’s a gamble really. The conditioning chemo for the trial transplant and the standard transplant are different. The donor cells could arrive from overseas and it be determined that they are not in good enough condition to be processed and take out the naive T-cells. In this case only the minimal processing that always occurs with donor cells would take place and Allistaire would get the transfusion of donor cells as is. There is a lot to consider, if even we end up having that choice to make. In the mean time, Allistaire will need some chemo to keep the bad guys down. This could either be another round of the DMEC (Decitabine, Mitoxantrone, Etoposide, Cytarabine) which she just had – in the clinical trial it has been given in one to three courses. Because her heart remains in good shape, this would be an option. Additionally, Decitabine can become even more effective over multiple courses in the same way that Azacitadine does, which she had post-transplant last time. Another option would be Decitabine alone. Lots of brainstorming amongst the docs is necessary.

I can hardly believe it. I can hardly take it in. I cannot stop smiling!!!!! My girl has been given one more open door. Every day of this journey feels like walking around a blind corner. There is absolutely no way to predict what the next day will bring. Often the entire trajectory of your world can shift from morning to night. The wind blows, the seas rage and toss and yet the north star is unmoving. I keep my eyes fixed on Christ, my one sure hold. Tomorrow morning we rise to a new day. I have no idea what will be known when I lay down to sleep Monday night. What if this whole thing, this crazy journey is just so that I would meet Debbie today in the rug aisle in Target? What if all these years of highs and dark lows are so that I could tell her, Debbie, my hope is in God! My hope is in God! Not that He will save Allistaire, though I have joyous confidence that He can overcome the most hideous of cancer cells, but that this whole crazy life and world are His and He will accomplish the beauty of His will which is more magnificent and glorious than we could ever, ever imagine. His promises are sure footings. Debbie, your hope can be in God, in Christ the Savior who was born to bring peace and goodwill to all men! Oh let the whole earth, the whole wondrous earth sing His praises, may every cell of my flesh rise up and strain to declare His love, His beauty, His overcoming power to redeem and raise the dead, the dead heart, the dead flesh. He is coming, He is coming and I am on the lookout!

(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy. I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)

Dec14

Black Waves

Posted on December 14, 2014 by Conglomeration of Joy

Standard

“To swim in the ocean, you dive through the waves as they come at you,” my friend Matt tells me as he points to the horizon and the relentless pounding of ancient force.

I do my best to dive through the first wave, but I don’t quite make it and the curling power forces me down. My body is tumbling in the cold water. I try to get my footing on the sand that gives way. Breath. Breath. I see the next one coming and before I can recover, it slams me down again. The waves kept coming, utterly oblivious to my plight. This must be what it feels like to be drowning, but that won’t happen. It can’t happen, right? After three or four waves I finally scrambled out of the pull of the waves, tired and shaken on the sand.

Matt is dead. The incomprehensible happened. And it’s happened so many times since.

My friend and her daughter are back on the Unit. She tells me how little there is left to try, how she must hang on for a clinical trial she hopes to get on, but it may not be until January. She walks slow in the hall, bearing up under the pain that seems to be everywhere. It has not mattered that her disease gave her an over 80% chance at survival. Her she is.

I saw a dad I know the other day. He and his daughter had driven hours to come visit one of her friends whose cancer keeps returning in the lungs, a bone cancer. This is how it goes and when it does, it almost always spells the end, eventually. He tells me of some of her other friends, this one at home on hospice to the north and the other to the south.

Hospice. “They went home on hospice.” Has a word ever cut so brutally. It is like a dirty, ragged knife, cutting slow but deep. It is tearing through your gut and it is so horridly slow but you can do nothing to stop its course.

I look at my friend and her daughter and think, here we are, we have at last become, “those people.” Those, that even within this small harsh world, have become “other.” We are the lepers. We are the stories to steer clear of. We are the living, breathing, shuffling statistics we have all sought to disregard.

I debated when my alarm went off this morning whether or not to give into the desire for sleep, but rather determined to get up and climb up and down the overly warm stairwell as some attempt at excercise. The nurse came in as expected for 6 am vitals and I asked her to see Allistaire’s labs.

“They’re all normal,” she said, “but the ANC isn’t back yet.”

The sickle came swift and sliced through my legs and left me collapsed.

“That means there are blasts,” I stammer and my eyes scan as she gets to the right page on her computer and there it is, everything is back now.

Absolute Blast Count: 10; Absolute Neutrophil Count: 0

Her ANC had been at zero for sixteen days and then on Friday it peeked up at 8. I was so relieved to see no blasts. Yesterday it was 20 with no blasts. Every day in rounds the resident repeats the same refrain, “awaiting count recovery.” That is what we’re here for. Get the chemo and then wait and wait and wait to see if it worked.

It hasn’t worked. The chemo has failed to control her disease, much less to suppress it to get into a position for transplant. It only takes the sighting of those few horrific blasts to know there will be no transplant next and what’s next requires a move to Denver. I imagine we will still have to wait until her ANC gets up to 200 to do the bone marrow test. You have to have enough recovery of the marrow to get a clearer idea of the amount of disease. What is clear is that her cancer is recovering along with some healthy cells.

I should also update the news that there is no match for a donor in the United States. Not one. She needed a U.S. donor to be able to get the Naive T-Cell depleted transplant that Dr. Bleakley is overseeing. It is just baffling and hard to imagine that in the whole of the United States there is not one person who can offer Allistaire the cells she would need for another chance at life. Please, if you are not on the registry, ask yourself why not? How often are you given a chance to save someone’s life? This is not abstract. This is as tangible as it gets! You haven’t had the time yet to go online to check it out? You’re afraid of the pain? Please, are these reasons to deprive someone the chance at life? So many have said they love Allistaire, they are praying for Allistaire. Is any child less worthy of life? I asked Dr. Bleakley if they could do another search for a U.S. donor if we ended up having more time before transplant and she said it was a matter of very diminishing returns. But you know what? It only takes one person to be a match, ONE. You could be that one person. Click HERE to sign up to be on the bone marrow registry. And please pass on this appeal to as many as you can.

The last two days have been pretty wonderful with Allistaire. I wish you could see her bright face and mischievous twinkle in her eyes. “You distract him,” she hoarsely whispers. “Connor, I think there may be dragons outside Allistaire’s room. Can you go keep a look out?” Connor, the CNA, joyfully plays along, and Allistaire speeds with IV pole in hand from bathroom to bed and throws the pale blue covers over her head. I cry out, “Oh Connor, where is Allistaire? I fear she has been eaten by the dragons.” The blankets wiggle and giggle with her uncontrolled delight. She wants to play this game over and over. Her appetite has been better and eating has become much less of a struggle. It still takes about two hours per meal but at least now she is getting in a reasonable amount at most meals. Her weight only dropped point two kilograms over the week that she didn’t eat much. She has loved having Betsy, the music therapist come by and sing songs together and play instruments. Two sweet young ladies from the ministry of University Presbyterian Church, Side-By-Side, came and played with her Friday afternoon. She absolutely loved having them and was desperate to have them stay longer. They promised to be back in seven days.

We’ve gotten into a little routine she loves. When I leave either in the morning or at her nap time, she whispers with glee, “you go over there by the curtain and I will tell you things.” So I obey and go stand at attention by the curtain. “I love you and I hope you have a good time exercising (insert whatever activity I’m off to do), and I’ll see you after my nap.” Then she blows me kisses and I respond in turn, “Allistaire, I love you, I hope you sleep well, and I’ll see you when you wake up.” I obnoxiously blow millions of kisses. Her eyes, so bright with happiness and her sweet, little voice tilting up and down with her words.

No matter how my times I have bent my knee before the Lord, submitting to whatever His will might be in her life, in my life, in our lives, I don’t know any better how to let her go. I have made no progress in my ability to know how to let her go. My whole being soars and stretches with love for her. This little girl becomes only more and more precious to me. And I just can’t comprehend someone so wondrously alive being dead. She is no different from millions of other children who have been lost. She is no more valuable than any other human, any other mom, sister, dad, grandparent that has died. But these millions upon millions of deaths do nothing to diminish the loss of her. If she dies, it will take all of her. She will be gone from this life. I see all that we’ve been given, these years with her, even these three whole years since she first became sick. I see how fortunate we’ve been to live in this time and in this place, we have been given so, so much. I see the overwhelming kindness of so many people, both that I know and those we’ve never met. I look at the Lord and I know I will see her again. I believe in the good that will come. But here and now, her loss would be loss. Her gone would leave a gaping hole. This life will no longer contain that voice, those bright eyes, that laugh.

I know I must go on, putting one foot in front of the other, going through each step that must be taken. I am asking God to hold me up. I am asking God to give me moments of joy in this midst of these crashing black waves. I will keep my face to Him, but it is a face streaming with tears, agony of heart, gasping of breath. Lead me by your hand down this road Oh Lord. I cling to you. I may even need you to carry me, I don’t know that I can will my feet to move forward into that darkness.

I cling to your promise. “I am in that dark place, Jai. You will be found my me. I am the God that turns darkness into light. I am the redeemer God.”

Dec10

A Thousand Barricades

Posted on December 10, 2014 by Conglomeration of Joy

Standard

Written yesterday:

Your body rebels and declares no one should need rise before 4 am, and yet out there in the dark crisp cold of night, yet early morn, you relish the clarity of stars and moon and blue light on snow as though you have snuck in and been witness to that which is the earth’s own private beauty, beauty sown in the hours that only animals inhabit. My lungs stretched and with wide-spread arms, pulled in freshest air and with glee, took in the tiny twinkle of stars, each one called out by name, by my God, by my Father. And with deep breath, I asked again that the Lord would hear my cry, that He would hold me up in the day and days to come. I thought back to the unexpected conversation with Nate about sorrow, about loss, about fainting hearts and my words that yearned to encourage that it is good to be broken, to be at loss, to know neediness because it is the way into knowing God and mysteriously we find ourselves stronger than expected because our need and our brokenness has led us to God, to be bound to an almighty, all-knowing good God. And under that purest clear of night sky, I asked myself again, if I actually believe it all. My answer came, not with the request for this outcome or that, but simply, show me your face God and help me to yield myself and my life once more, again and again to you.

I left Bozeman this morning and arrived in Seattle in clouds and gray, unseasonably warm with no need for a coat. As I crept through traffic along I-5, I thought back to that December day exactly three years ago. Dr. Tarlock called on that Friday afternoon to say simply that they had found tumor cells in Allistaire’s bone marrow and we needed to come to the hospital. Results weren’t supposed to come until the following Tuesday, but there was the word “cancer” and “tumor” scrawled on a pink sticky note and then the warm pink glow of winter afternoon light on the faces of two little girls in car seats as I drove north on I-5. An overly peppy song played in the car with words that defied the upbeat tone: “Blessed be your name in the land that is plentiful, where your streams of abundance flow. Blessed be your name. Blessed be your name when I’m found in the desert place, though I walk through the wilderness, blessed be your name. Every blessing you pour out, I turn back to praise. When the darkness closes in, Lord, still I will say, blessed be the name of the Lord…blessed be your glorious name. Blessed be your name, when the sun’s shining down on me, when the world’s all as it should be, blessed be your name. Blessed be your name on the road marked with suffering, though there’s pain in the offering, blessed be your name. Every blessing you pour out, I turn back to praise. When the darkness closes in Lord, still I will say, blessed be the name of the Lord, blessed be your name.” Allistaire, never able to pass up a good beat, rocked out in the back seat and bright smiles lit up their faces.

Lulled by traffic and familiarity with the song, I startled at the words, “You give and take away. You give and take away. My heart will choose to say, Lord blessed be your name.” I looked in the rearview mirror at those two happy faces of my daughters, oblivious to what ill fortune had befallen us, and wondered whether or not there was a future that would still hold those two sets of laughing eyes, laughter playing off laughter. And so, from the very beginning I have looked this threat, this terror, this sorrow in the eye. I refuse to turn away or diminish, but I look it dead on and I call out to the Lord. Help me, oh God above, you who call out each of the stars by name, give me eyes to see what good you will bring out of this brokenness and more than anything, help me to fix my eyes on you and call you blessed because you have upheld my heart and strengthened my faith that I might endure for the joy set before me, if even the joy does not come until I “cross over the river and rest in the shade of the trees.”

I wanted to go home. Last time Allistaire relapsed, a span of five whole months passed before I returned home. That was far too long to be away, but in those days, and even in these, home feels like another world, a world which might only exist in my imagination and it has seemed easier not to taunt myself, but to stay fixed on the reality at hand, to keep my hand and heart on the endeavor to fight for Allistaire’s life. But my sweet mother-in-law took me at my word that I wanted to be home more often, and gleefully declared, “let’s be radical. Let’s just make it happen.” So while only 41 days had transpired, I got on a plane late Thursday night. The Bridger’s were still there, glowing with snow covered ridge in light of fullest moon. I walked through the door and the same strange smell of our home, greeted me. I stood, unmoving, staring at the kitchen counters and could hardly believe that not long ago, I lugged in bags of groceries and stood with cutting board and knife preparing dinners, trying to push myself to try new recipes on occasion. How often had I stood on one side of the island, preparing breakfast, cleaning up breakfast, emptying and filling the dishwasher while Allistaire sat on the opposite side, breakfast and lunch day after day after day. Had that really ever happened or has she always been sick, always been bald and in bed, always been vulnerable with no white blood cells, always, always fighting her “sickness.” Had there ever really been ordinary days, most beautiful, most cherished, ordinary days of incalculable value and beautiful ordinary delight?

In the morning I opened my eyes to that same beautiful wood paneled ceiling, to the blue of sky up the hill and stateliness of evergreens framed by my bedroom windows. With trepidation, I entered her room. There hung her school uniforms, white and pale blue shirts with peter pan collars and navy and plaid jumpers, worn sometimes with white knee socks and sometimes with navy tights. I found a bag with her school pictures, gym shoes and the cloud, puffy with cotton balls and raining bright silver streamers of rain. And my breath caught in my throat as I realized how close this all was to walking into the abandoned room of a dead child. I looked up the wall at her artwork, and the number one outlined in pinto beans and bins of toys on the floor. And the question stabbed through me over and over, what if she never returns?

Wednesday had been a particularly hard day. Sten left the day before, great welling of tears in his eyes as he held her goodbye, not knowing if he would ever again see her with hair. Who would she be when he came back? Her hair had started to fall out and began to coat everything, including Doggie. Hair all over her clothes, in her mouth and food. I told her I would cut it before I left, but I wasn’t prepared for her request Wednesday morning that I cut it because it was bothering her. In my unconscious mind, I still had one full day left with her before more of her would be stolen away. But I knew she was right, and I forced my hand to function and grasp the scissors and not gasp at every cut through the blonde hair that has never had the chance to grow more than five inches long. And there she sat, part of her gone and in her place a prison inmate, a child being sent to the gas chambers. We walked a slow drudge to the bathtub room to wash away the debris of life, of a hoped for life, a life that had appeared to be thriving. I asked the CNA to change the bed while we were gone, to take away the scant pile of blonde clippings.

Two hours of eating lunch only yielded five bites and not even a cup of milk completed. I had to entrust the nurse to put her down for her nap so that I could drive downtown for the transplant consult meeting with Dr. Marie Bleakley. I sat across from her just as I had a year and a half ago, to go over the transplant for Allistaire, to hear the heavy realities and hopefully be shown the ray of light in all the pressing darkness. The one year survival rate for patients getting a second transplant is 25%. Of those, only half live more than five years. So 12.5%, that’s the odds, if she can even get to transplant. In her favor is that fact that she is a child with a healthy body, besides cancer, that because she has not had TBI (total body irradiation) they can give her the most powerful transplant in existence. Lastly, she was in remission for nearly a year which says something about the aggressiveness of her disease. However, in order to get to transplant, the doctors will make a subjective decision about whether or not she has “responsive disease.” They must see a significant improvement in her chloromas (the six places of solid leukemia). If her disease can march ahead undaunted in the face of these four powerful chemotherapies she has just received, a second transplant is highly unlikely to stop it. So while, thankfully, there is a transplant that does not require remission, nevertheless, they need to see a disease that gives evidence that it can be shut down. If this round of chemo does not work, must likely we will go to Denver to do the DOT1L inhibitor trial.

The most optimal transplant for her is the clinical trial, for which Dr. Bleakley is the principal investigator. What is unique about this transplant, is not the conditioning regimen (chemo and radiation) but what is done to the donor cells. Dr. Bleakley’s team, in her words, “attaches little magnets to the naive T-cells and removes them, returning the remaining cells to the patient.” The goal of doing this is to reduce the incidence and severity of GVHD (graft versus host disease) in which the donor cells see the host/patient as foreign and attack the body of the host. GVHD can be debilitating and even cause death. So while it is really desirable to reduce GVHD, there is the concern that in doing so, there may be a reduced GVL (graft versus leukemia) effect. The great hope of transplant goes beyond the decimation of the conditioning regimen, and is more firmly rooted in the science of the donor cells seeing the host’s cancer cells as foreign and killing them. Forty-six patients have undergone this manipulated T-cell transplant and there are quite promising results in terms of reduced GVHD. I was also delighted to learn that there has been a reduced incidence of relapse amongst the AML patients on the study. Dr. Bleakley says that perhaps they are removing some GVL effect when they remove the naive T-cells, but it seems they are also enhancing/enabling the GVL effect more greatly specifically with the AML patients. An otherwise very soft-spoken woman, Dr. Bleakley becomes much more animated when she discusses the power and hope of immune therapy. She explains that she and a number of her colleagues were trained under Dr. Stan Riddell at Fred Hutch who was in turn trained by Dr. Phil Greenberg. The primary purpose of developing this transplant is to provide a platform for the immune therapy that doctors like Dr. Greenberg and Dr. Jensen are developing. The idea is this – you can’t have raging GVHD which requires immunsuppressants and make use of the wonders of modified T-cells – the fighters of the immune system. There is no point in being given amazing, super powered T-cells if you just to have suppress them.

Needless to say, listening to her describe this new transplant that would provide the best shot at being able to receive the modified T-cells that Dr. Greenburg is developing, was the ray of light I was desperate to cling to. Of course, simply getting Allistaire in a position with her disease to be able to even have a transplant feels nearly impossible given how many treatments failed the first time she relapsed. Then Dr. Bleakley revealed another major barrier to Allistaire being able to have this transplant. She must have a U.S. donor. The donor search team has identified a 10 out of 10 donor for her in the German system, but this transplant necessitates a donor from the States. The reason for this is that as soon as the cells are harvested, they begin to die and degrade. The manipulation of the T-cells for the trial requires an entire day of work once the cells arrive. By adding on the time it would take the cells to get from Europe to the U.S., the cells would probably not be in good enough condition for the transplant. Because the cells are being manipulated, consent from the donor is required. This process and approval has been set up for the trial in the U.S. with the FDA. Not only would the cells be too old if they came from overseas, there is no regulatory process in place to allow a foreign donor. It is possible that there is someone on the registry in the U.S. that could be a match for Allistaire, but that is currently unknown. The protocol for the donor search process halts the search for a donor once an acceptable donor is located. The probable reason why it has been easier to find Allistaire a donor in the German system is because the folks on that registry actually pay to be on the registry and renew their commitment annually. Additionally, I think these potential donors start out with giving a blood sample unlike U.S. donors who only give a swab of cheek cells. This means that the German system can offer much higher level testing/matching than the U.S. system straight out the gate. The German registry also pays for the remainder of the testing necessary to determine a match. In the U.S., it costs three to five thousand dollars to test each potential donor. This is why the search protocol is to stop the search once a donor is located. There is no reason to continue spending money to test additional potential donors, if you’ve found one that will work. Dr. Bleakley has instructed the search team to pursue U.S. donors, so we will have to wait and see. Kind of a wake up to realize that though there may be 22.5 million people on the U.S. registry, there still may not be a person that will match Allistaire and allow her to have the opportunity for this amazing transplant option. Are you on the bone marrow registry? Click HERE to join.

If Allistaire were unable to get a matched 10 out of 10 U.S. donor, and she was in a position to receive a transplant, she could have a the standard transplant and use the donor from the German system. Like the naive T-cell depleted transplant, a standard transplant does not require remission but requires the collaborative agreement amongst the doctors that Allistaire’s disease has responded enough to therapy to give the transplant a higher likelihood of success. The third option is to have a cord blood transplant. There is debate about whether or not cord blood transplants result in greater GVHD. The two clear down sides to a cord blood transplant for Allistaire is that it absolutely requires strict remission and it would prevent her from being eligible for the modified T-cells developed in Dr. Greenburg’s lab, as that study requires a matched 10 out of 10 donor.

Yesterday I spent some time on the phone with Kira, the transplant insurance coordinator at SCCA (Seattle Cancer Care Alliance). At the end of my meeting with Dr. Bleakley, she asked, “So your insurance is going to pay for this?” Oh dear, I had not even thought of that. I just assumed we were in the clear because of that awesome bill that was signed into law in 2013 prohibiting insurance companies in Montana from denying clinical trials to cancer patients. Dr. Bleakley said that sometimes insurance companies with deny all clinical trials and sometimes they will allow Phase 2 trials but not Phase 1. So a conversation with Kira was in order. I was baffled and enraged when she told me that the insurance companies have found away to get around that law and can still deny any clinical trial they like. “They would rather her be dead!” I cried out. Healthy is better than sick, but dead is all the better still. Dead people don’t cost anything. I asked her if they just deny clinical trials outright and she said that they used to but that it’s not quite that bad anymore. She encouraged me that she and her team are here to fight on Allistaire’s behalf and that like the insurance companies, they too have ways to get around the barricades the insurance companies throw up. She described several different tacts they can take, one of which involved a 30 day appeal process. “We don’t have 30 days!” I yelled. Fortunately, Kira said a number of the appeal processes can take just a matter of a few days. So there is hope that we can get approval through insurance but the process cannot even begin until the doctors can say that Allistaire is actually in a position to have a transplant.

Bone marrow tests occur between day 28 and day 35 of a round of chemo and necessitates an ANC of 200 or higher. There need to be enough cells present, indicating sufficient rebound of the marrow, to really determine how effective the chemo was. Day 28 will be December 17th. Bone marrow test results take about 48 hours but because she also needs PET/CT scan, we will likely get some telling results on the day of testing.

Every where I turn there are barricades to the road ahead. At so many points, the door could be slammed shut on Allistaire’s life. I know that no matter the number of road blocks or the seeming difficulty, nothing is hard with the Lord. With His word He spoke the world into existence. These seemingly insurmountable walls are like wee blades of grass to God. I know He is able. I don’t know however, what His plan is. It is hard not to lose hope. I spoke with a staff person at the hospital a while ago and I know I sounded like the downer because I continued to point out that her death is entirely possible. The person responded that she and her coworkers could not do their jobs if they did not hope for life for her and so many like her. Yes I hope for her life, but I cannot have the endpoint of my hope be in whether or not she lives. My hope must, it must go beyond the grave. The trajectory of my hope ends in God, it ends in the fulfillment of all He claims is true. My hope rests in His promises that proclaim that all life is eternal, and life for those that love Him, are with Him for eternity and that He will redeem all things. He promises that these sufferings will one day be shown to be “light and momentary,” and that they are “achieving for us an eternal glory that far outweighs them all.” My hope enfolds the hope for her temporal life, and my temporal life, but it far exceeds these and strives on, yearning forward to eternal life, pure, abundant, eternal life with God where sickness and death are forever done away with and life incompressible rises up.

Sunday night, after we finished decorating the Christmas tree and put Solveig to bed, Sten and I sat in the light of the beautiful tree. How many Christmases have we sat before the tree, the light reflected in purples, blue, pink and yellow? Last year when I packed up the Christmas decorations, I wondered what this Christmas would hold. I wonder now what next Christmas will be. Sten and I sat and cried, heaves and silent sobs. Every joy I have known with Allistaire, now sits tied and counter-balanced with cutting pain and sorrow. We ate pancakes Saturday morning and Allistaire was not there. She was not in the snow seeking just the right tree. Solveig hung the ornaments that were Allistaire’s, carefully selected each year with the intent that one day she would have her own home, her own Christmas tree. When the three deer crossed the snowy meadow, I could not call to Allistaire, to quick, get the binoculars. She was not there. Will the brightness of her eyes ever again cheer eagerly at the sight of animals in the field?

Being home was hard. My imagination so honed. But being with Solveig was wonderful. When Solveig came out over Thanksgiving, the priority was for she and Sten to spend time with Allistaire. At home, we had the joy of spending time together in ordinary ways. It really was a full, wonderful four days. On Friday, I took Solveig out of school early to get her flu shot and head over to The Coffee Pot, Solveig’s favorite lunch spot. Then on to my favorite antique store and a few errands before we met up with Sten to go see Big Hero 6 all together. The night finished up with burgers at Ale Works, another favorite of ours. Yes, we settled down into the booth in the train car where we four have often sat. There was an empty place at the table that threatened to steal the joy of the present, and clamp down sorrow. But on we went. Saturday we slept in and then had chocolate chip and apple pancakes. We drove up past Bridger Bowl and used our $5 Forrest Service pass to get a happy little bright green pine tree. I put away the Halloween decorations that have just sat unattended. Later in the afternoon we went into to town where Main Street is closed off for the Christmas stroll. This year it was nearly 60 degrees warmer than last year. We enjoyed the artisans at SLAM fest and then a great dinner and show at our favorite venue, Peach Street Studios. It was a splendid day all around. On Sunday I had the joy of hiking the M with my friend Hope and talking over breakfast. Lunch was with dear April and the unexpected conversation with Nate. Sunday night we finished up the Christmas decorating. The garland and trees, the light-up snowman for Allistaire’s room sit still in the dark boxes, hoping for use another year. On my last day, I spent hours at breakfast with Pam, my dear, dear friend who knows best this hard road. I could never have imagined the gift of her friendship. We have committed to be there for one another. We dream of our children being adults together, but come what may, we look forward to the hope of being gray haired old ladies together. Jess and I, spent time and rejoiced at already having nearly 15 years of friendship. Jess blessed me with tear filled green eyes and tales of missing me. The afternoon wrapped up with an appointment with the social worker at the Bozeman Deaconness Cancer Center to explore options for counseling and then an all family get together at our house over pizza, salad and cherry crisp.

Solveig could be heard crying in her room after I put her to sleep. Another leaving. Unknown days. A black wall of unknown past December 17th. With trepidation I walked the hall to Allistaire’s room at the hospital, fearful of blood counts and possible blasts. Rather, I was greeted with the sound of Allistaire’s laughter with Papa in the room while I talked with Kathy the nutritionist who says she has one and a half kilograms wiggle room with her weight before a feeding tube would need to be seriously considered. Then Dr. Leary appeared for rounds with news that both her ANC and ABC (Absolute Blast Count) remain at zero. Oh how I love, love, love that little girl. I laughed out loud when I saw her very silly head, now far more bald with the exception of the fringe of wispy blonde hairs framing her face and neck. What is hilarious is the spiky brown hairs in the back that stand with resolute determination to stake their claim to her cranium. They look like the have no intention of going anywhere but maker her look so very silly. She was full of joy and glee, drawing and coloring at her table. On Wednesday night she had spiked a fever, which necessitated blood cultures and broad-spectrum antibiotics until they could determine the source of the infection. When I left on Thursday, she was a feeble little child who wouldn’t eat and only wanted to lay in bed with warm packs on her tummy. She has had constant diarrhea for the past few weeks and seems to have pain from cramping. It was hard to leave her when all I wanted was to curl around her and bring comfort. So it was exceptionally lovely to find her in much better spirits.

We are twenty-two days into this round and 14 days of zero ANC. We wait. I try to get as many calories in her as possible. Oreo shakes have seemed to help that task a bit. I don’t take it a day at a time. There are windows of hours and moments that require the aid of the Lord. I told Nate about manna. Such a crazy tale, but really so beautiful. The Lord provided manna for the Israelites in the desert for food. But only for a day. They could not save or horde the manna. They had to trust the Lord that He would again provide for them the next day. They had to put their hope in His faithfulness, His sincere love for them and His actual capacity to provide. I eat the manna. His mercies are new every morning. Great is His faithfulness.

3 Years ago, December 9, 2011:

Nov18

Dread, Hope, Dread

Posted on November 18, 2014 by Conglomeration of Joy

Standard

I know I should go to bed but I know that when I do, tomorrow will hasten its coming. So fast it will fly and then we will have arrived on the threshold of that day we must enter the hospital. I strain to slow my steps as though I can with force of will prevent the series of events which will come, which must come to bring us to Wednesday morning. The halls are bright with light and the colors, blue, orange, green are meant to be cheery, modern. But to a prison cell it feels we are being sent. And the dread is not because of the annoyance of people perpetually coming and going or the fact that we are closed into a tiny space where no normal advances of life can take place, where we are stunted in 4 hour cycles of vitals. No, that is endurable, that is bearable. The dread, though weighty, sinks slow and silent, settling firmly in my heart, in my gut. Will she ever leave again? Will the sweet small child who walks through those doors ever, ever return? I KNOW what happens in that place. I know what terrors lurk. I feel as though I’m walking my child to the gallows. I’m doing this, in her innocence, I lead her into that place. But I have no other choice. I must hand her over. It’s breaking my heart to know what will soon be done to her, again. How can she endure? She is so small. And she must do it all over again for a second time. My heart tears with screams – how can I be forced to choose between these poisons and destroyers of chemotherapy and radiation, and her death? Neither are good! I despise being crammed in this wretched crack of murderous choices.

But I yield. I take her by her small, warm hand and I will lead her in. It does not take long in the fight against cancer to know so clearly how each step forward is gift, pure, free, underserved, gift. For you see those falling away around you and you know how very fortunate you are. The sun has shone upon you, you are the blessed and you have absolutely no room to grumble or complain – for you still stand. I don’t know what the days ahead may hold. I don’t know how long we will be locked in that place or if ever, ever my beloved Allistaire will come out, marred, but alive and radiant.

This morning we went to clinic and Allistaire had labs drawn, then we saw the nurse practitioner. At the end of the appointment we had the joy of having Dr. Gardner come by as well. She was able to relay the discussion regarding Allistaire that the Hem/Onc and transplant doctors had this past Thursday. They agreed to prioritize a clinical trial transplant whose aim is to reduce Graft Versus Host Disease (GVHD). Based on Allistaire’s HLA (Human Leukocyte Antigen) typing, they are optimistic that they will be able to find a 10 out of 10 matched, unrelated donor that will fulfill the protocol’s requirements. The trial is testing the efficacy of removing “naive T cells” from the donor cells and returning the remaining cells to the patient, leaving the memory T cells. For those new to bone marrow transplants, the idea is not only that you myeloblate (utterly destroy) the patient’s marrow in the hope that you also destroy the cancerous cells, but that the real beauty of transplant is mythical GVL (Graft Versus Leukemia). When you receive the infusion of the new donor cells, these cells enter the patient’s body and sees their body as foreign. The immune system is created to search out and destroy what is foreign and unwelcome. This means that both healthy and cancerous cells may be attacked. The attach of healthy cells is known as GVHD and the attack against cancerous cells in the case of leukemia is known as GVL. So this transplant is designed to remove the T cells that indiscriminately destroy and leave the rest. While I love the thought of less GVHD, I asked Dr. Gardner with concern, whether or not such a transplant would produce diminished GVL. With a smile, she said, no, they don’t think so, they have had very promising results.

Another upside of this transplant, is that with diminished risk of GVHD, there is a greater likelihood that Allistaire would be in a better position to receive the infusion of the modified TCRs (T cell Receptor). When you have GVHD, one may need to go on immune suppressants, often steroids, to reduce the immune response of the T cells. The most common places under attack are the skin, liver and gut. It would make no sense for Allistaire to receive fancy, modified T cells only to suppress them with steroids, rendering them ineffective.

Perhaps the greatest ray of hope, came with the words, “transplant without remission.” It sounds like the transplant doctors are still willing to go ahead with this transplant, even if Allistaire is not in remission. To qualify for the trial, Allistaire would have to have 10,000 or less circulating peripheral blasts, a 10 out of 10 matched, unrelated donor, and generally be in good condition (organs functioning well, no out of control infection, etc.). Dr. Bleakley, the principal investigator for the trial at Fred Hutch, does not view Allistaire’s chloromas (solid leukemia outside of marrow), as disqualifiers. Of course it would still be optimal for these spots to be gone or substantially so, but their presence would not close the door for her. It may mean, however, that she would need focalized radiation to these locations in addition to TBI (Total Body Irradiation).

Suddenly, the yellow walls of the room felt fitting for the hope swelling in my chest. There may be a way through. There is a ray of hope. That is what I needed to face an indefinite inpatient stay. Knowing there is hope, spurs one onto fight. Before this conversation with Dr. Gardner, it just seemed like this was all doomed to fail which made it all the harder to willingly walk into that lock-down prison. Good fortune continued with Allistaire drawing her first person and getting bumped up in the schedule for her “back poke,” where they test her spinal fluid for leukemia and inject a chemo, cytarabine.

Allistaire had just been wheeled into the recovery room where they practically kick you out 5 minutes after a procedure, when our nurse practitioner walked in with the lab results. In the appointment we’d had everything back with the exception of the ANC (Absolute Neutrophil Count) which always takes longer. All her labs had looked great, despite her falling blood counts which are naturally to be expected because of the advance of her leukemia and the chemotherapy. The ANC was fine, 1022.

The absolute smack in the face was the presence of an Absolute Blast Count – 68. Blasts are immature cells and they can be completely normal depending on their location and number. Blasts in the peripheral blood, and of more than just a few, are most likely leukemic. There was that wretched number declaring the very real increase of her cancer, such that it has pushed out cancer cells into the bloodstream, and this, even in the face of seven days of chemo. Now, Decitabine is not a hard-core chemo, is known to take a while to be effective and is not what we are relying on to get her cancer into remission. Yet, it makes you want to throw up on the spot. Blasts are the harbinger of things grossly out of control in the marrow. Their presence stings and burns the mind. Blasts were the evidence that every round of chemo prior to her first transplant had failed. It is not an overstatement to say that they strike terror.

All the hope I had known in that yellow room thirty minutes before, seemed to have been violently suctioned away. I felt panic and desperate need to talk to Dr. Gardner about this most wretched development. She appeared shortly and said in short, “I don’t want to blow it off, but it does not add to my level of concern. It does not surprise me and it doesn’t change our plan.” She affirmed all of my assertions regarding Decitabine that I had quickly thrown together in my mind. Well, I would have felt a lot more free-spirited joy had those blasts never shown their ugly faces, but all hope is not lost.

For now it is late, but I have one last morning to sleep in and snuggle with my girl, just the two of us. No lights, no pumps or beeping sounds, no interruptions for vitals. One more morning and day of seeming normalcy.

For more information on the transplant trial, click the link below. The trial for the modified TCRs is below that.

Selective Depletion of CD45RA+T Cells From Allogeneic Peripheral Blood Stem Cell Grafts for the Prevention of GVHD

Laboratory-Treated T Cells in Treating Patients With High-Risk Relapsed Acute Myeloid Leukemia, Myelodysplastic Syndrome, or Chronic Myelogenous Leukemia Previously Treated With Donor Stem Cell Transplant

Explanation of TCRs from the Juno Therapeutics Website