Tag Archives: cytarabine

Feb24

Severely Diminished

Posted on February 24, 2015 by Conglomeration of Joy

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Pediatric Echocardiogram Report: Name: Allistaire Kieron Anderson

Summary:

1. Severely diminished left ventricular systolic function

2. The left ventricle is moderate to severely dilated

3. Ejection fraction (apical biplane) = 11%

4. The left ventricular fractional shorting is 8%

5. Mild to moderate mitral valve insufficiency

6. Markedly abnormal left ventricular diastolic function

7. Dampened systolic amplitude due to poor cardiac output

8. Moderately dilated right ventricle

9. Severely diminished right ventricular systolic function

10. Estimated pulmonary artery diastolic pressure is 16mmHg above the right atrial pressure, based on a pulmonary insufficiency jet velocity of 2.00 m/s

11. The peak tricuspid regurgitation velocity is 2.9 m/s=34mmHg

It goes on for three more pages giving the details that build the summary above. I didn’t cry immediately. My face stood still as I scanned and scanned the words, horrified at how many aspects of her heart are “severely diminished,” or “markedly abnormal.” Somehow I made my way to the quiet room before I began gasping for air, eyes wide, eyes gripped closed and mouth wide with silent ragged terror. What do they call it? A flat spin, when a plane begins this awful downward spin from which there is no return? It seems we are caught in this strong silent force, pulling her downward, down at frightening speeds. I see the world whirling, whirling, images blurring, tears streaming and all the while mouth screaming in silence. I can’t hear it. I hear nothing. I watch from outside and am trapped with her inside this gravitational horror from which it seems no effort can overcome.

The cardiologist says she does not know, she cannot predict if Allistaire will be able to recover from this heart failure. If she does, it will take months. The primary question is whether or not we have the time for her heart to heal. A question no one can answer. A question that feels futile because I don’t see how it will impact what we’re doing here. We don’t really know the status of her disease because her heart is not in a condition to sustain sedation for the procedures necessary to get the answers. Fortunately, her ANC, which hangs around 200, is not so recovered that it is necessary right now, or even advantageous to pursue the answers. But she will of course need more chemo. It seems abundantly clear that if she can ever recover enough function, it will take a long time, longer than the leukemia will sit obediently back and wait for.

On Wednesday afternoon, we will have a Care Conference meeting with Dr. Gardner, her oncologist, one of the cardiologists, and one of the ICU attending doctors. Ashlei our social worker will be there hopefully and last night through tears and few words, I called Sten to come, come to Seattle. Sit with me Sten and bear the brunt of these words that pummel and burn. Dr. Gardner will lay out the chemo options. I know there are several that are not considered hard on her heart that have been effective in the past, whether or not she can endure them at this low functioning or not, I do not know. I do not know. Dr. Kemna, the cardiologist I met with yesterday, said we need to discuss now our plan, our desires, should some more extreme intervention become necessary. She made the point that should Allistaire require interventions like being on a ventilator or on ECMO (a crazy amazing terrifying machine that circulates the blood for the heart externally), we need to have a degree of confidence that she could come off of them. Yah, because otherwise, what would be the point? What’s the point of putting her on a machine to sustain her life if there is no hope for life on the other side of these? This is what the ICU doctor alluded to the other day when she said we needed to discuss codes. If Allistaire codes, if her heart stops, should they intervene, should the room become a mass of swarming bodies intent on reviving her flesh, pulling it back from that dark place?

I’ve been here so long, circling, pacing, hunting and being hunted. “Jackle on your heels,” is how my friend referred to it yesterday. The shock doesn’t let up. It seemed at last we had that beast pinned, we needed only to enact our last attack, the last twist of its wily neck to break it for good…but then I feel the unexpected pressure of noose cutting off my airway. Without sound, without anticipation, the breath is being extinguished. I stutter and am confused, “But don’t you see, don’t you see, we’ve almost killed this foe? What are you doing? Let me finish this act. Let me at long last put an end to this stalker, that I have danced with night after night, lacing through the trees in the dark of night forest.” No response, just greater and greater constriction.

The cardiologists have increased her Milrinone to .75 now and taken off the Carvedilol. Apparently the Carvedilol can not only help with heart failure, but can actually induce it when the heart is so, so sick. This morning they will have to hold her Digoxin because her potassium is a little low. It is ever a careful, delicate balance, intricately monitored. They can go up on the Milrinone, only to 1 or maybe 1.2 and then they would consider adding other meds, norepinephrine and/or epinephrine. I feel myself giving over a little, letting go a little of my desire to be so involved in the details of this med or that at this level or that. I am drawn to her neck, that warm incredibly soft place where I should like to stay. I am pulled to gaze at her cheeks, the perfect slope of her nose, to run my hand up and down the beautiful softness of her arm, to listen intently to her sweet voice. I wish to dwell forever pulling the curve of her little body into the curve of mine. My whole body grieves the thought of ever being separated from her, having her pulled gently, silently away, away…

Perhaps I can just take her and run. How I long to soar with her away from this place. I am just now realizing I had dreams of flying last night, of running soft through the grass and then just lifting off. But there was too a severe hill, so steep that you could never, ever climb down, rather it was a ledge, a cliff. But the girl in front of us said she thought she could make it despite having seen her brother fall straight to his death. I told Allistaire, who crawled behind me, No, we will not go this way, we will go around, we will find another way down. And then that girl jumped, she just leapt and indeed fell utterly to her death. I felt flattened as I slept last night, every single surface of my body pulled so heavy against the couch/bed. My face is flat. It is weary and aches dull from hard crying. A new beautiful day has come. I acclimate, I adjust to this new reality. Just I have done on countless turns in this spinning world. Get slammed. Slowly arise. Walk tentatively, knowing it is likely you would be slammed again to the ground, cranium ground into dirt.

The light is growing longer in the evenings and on these clear days I am transported back to late summer evenings with Allistaire, out on pass from the hospital, going to Magnuson park after all the other kids have gone home, and then we come to play. We would arrive as late as we could back to the hospital. There is a sweetness to those memories, a glow of mango light at the horizon blending into green and the vast stretch upward into perfect blue of night. Birds singing in the evening and trees all lush, green upon green. I remember clear still mornings walking high on the sky bridge of the 7th floor, Mt. Rainier looming blue to the south, awaiting that pink fire of first sunlight. The cold of new day, birds, ever singing, twittering, calling, glorying in their existence. I felt strangely serene, with the cold clear thought that perhaps I was there to help her die well, to stay by her side, loving, caring for her through each step toward that end that seemed ever closer. Those days two years ago loop around wide to now, linking, completing a circle. I think back to those days and raise up those truths, those clarities the Lord showed me then. The suffering and the joy sit side by side, neither undoing the other, both deep, both broad, both stretching to the horizons, swamping and flooding my heart.

The music slows, vast space between each note. My heart calms, slows, rests. As I came down the hall to the Unit at the end of nap time and saw that perfect white sparkle of first star, alone in the evening sky, I paused long, wondering, wondering, what do I pray? What do I come to You and ask oh Father, oh Father. I seek to abide in you, rest in you, just rest, still my sore arm from its work, let me lie here and rest in You. I have no idea what the days ahead hold. I have no strength to look out long, scanning the horizon, squinting to try to make out what is ahead of us. Rather, I shall curl here with my sweet girl and rest in the shadow of His wings, sheltered, beloved, held. Be still my soul.

Feb22

Wait and See

Posted on February 22, 2015 by Conglomeration of Joy

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Strange how you can have expectations, just ideas you’ve grabbed from where? Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat. Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week. Upon what basis did I come up with those numbers? Out of thin vacant air. Today marks her 37th day in the PICU. Today we begin our 6th week. I remember a friend telling me they were in the PICU for two months. “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight. Last Tuesday, 2/17, we were scheduled to be transferred to the BMT (Bone Marrow Transplant) team. We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin. It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come. In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal. The reality is sinking into me that she may never get to transplant, or at the best, it could be far off. A summer gone. The doctors tell me we must be patient, and wait and see, that it is often best to be patient. Patience, yes, I know something of patience. But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans. While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent. To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it. Her heart rate and respirations trended up slightly and there was the issue of nausea to consider. They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms. While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today. I feel disheartened. Yesterday they decided to put her on Digoxin, another heart med. Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal. The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone. They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels. Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.” Her Lasix draws off potassium which they replace in her TPN (IV nutrition). On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.” It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors. Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure. Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo. I don’t feel very optimistic. The BNP hasn’t gone down really. We’ll see. She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons. It was originally planned for Tuesday solely based on protocol. If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on. As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering. However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation. At this point, her severe heart failure makes anesthesia more risky. Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team. Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly. Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks. I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened. So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast. After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down. The nurse re-loaded her cup and she finally got in the minimally required amount. The results of the CT were mixed. “There is minimal residual wall thickening involving the sigmoid colon. The rectal wall thickening has nearly completely resolved. New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening. There is a slight interval increase in degree of surrounding fat stranding. The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.” So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete. But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now. Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema. These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting. I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation. My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near. I love that she too is so passionate about finding a way through for her. We are both assuming her marrow remains in remission. So she proposes we put her on Azacitadine given that it worked before. (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.) I wondered about possibly using Decitabine since it’s a little more hard-core than Aza. We do still have her chloromas (solid leukemia) to consider. She said she would consult the other AML docs. She also mentioned Clofarabine as an option. The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan. Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine. All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer. Wahoo!!! I love options! After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant. But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is. I couldn’t help myself, knowing all that has transpired over this last month. I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day. Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars. Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days. This puts her total bill since diagnosis well over 5 million dollars. Isn’t that staggering?! Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?! What if that money could be put toward cancer research? What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer? What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks? We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research. Such an exchange is not possible. But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help. You have felt powerless to do anything to help Allistaire. Giving to cancer research may not feel like directly helping Allistaire but it is! First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey. It is tangible. I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more! Will you stand beside me? Will you give? And you know what? We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research! Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission! This is not some ambiguous, indirect, vague blessing. Cancer research is precisely what provided her last transplant which has given her life the past two years. You say you want to help. Your heart is heavy with grief for us. You wring your hands wondering what you can possibly do. GIVE! Support cancer research at Fred Hutchinson Cancer Research Center! It’s not hard, it’s not complicated. Give. Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.

Dec21

Juicy

Posted on December 21, 2014 by Conglomeration of Joy

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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)

Nov4

Press On

Posted on November 4, 2014 by Conglomeration of Joy

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

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

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

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

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

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

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

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

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

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