Tag Archives: etoposide

Jan9

All together different

Posted on January 9, 2015 by Conglomeration of Joy

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

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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.