Tag Archives: DMEC

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!

Nov21

I Choose to Worship

Posted on November 21, 2014 by Conglomeration of Joy

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Perhaps what is the most strange is how very normal this all is. It is like the song on the piano you have played for years – your fingers know what to do without the necessity of thought. Your body moves in a constant sway from years of rocking babies. Circles round and round. Meal time has its own routines. Take a bite. Take a sip. How many millilitres is this? Take a bite. Take a sip. Threats to turn off the movie. Hang the chemo wearing the blue garb. A second nurse checks. End of Infusion. Flush. End of Infusion. Alarming pump demanding attention. Next chemo. Every day a bath with the protection of parafilm, press-and-seal, blue tape and finish up with the warmed Chlorhexidine wipes. Another lap around the Unit on the bike, peering into windowed doors trying to guess at the lives within. Blood counts fall. Transfusions anticipated. Round and round the circles go, small and wide. And the faces come, one after the other, familiar, loved, with eyes slanted down in sorrow and smile on lips at the sight of a friend. Out the window I see my old dorm from college. The six cypress trees stand as they always have, clustered like tall girls, ever silhouetted against sunset. Like a strange attractor in chaos theory, my life keeps circling back to this place.

We’ve settled into a most lovely room, one of the best I’m told, 218. The view stretches wide out to the south beyond a sea of trees clinging to fall, to the lake and off in the clouds, that mysterious looming form of Mt. Rainier, cloaked behind clouds. I already know the drawers and what fits where. I ask for more of the barf buckets to organize socks, underwear, snacks and miscellaneous utensils, straws and cups. The little green pot of fake orange flowers sits on the table, reminding us of a world outside that bears such dangers as fungus and bacteria and the passing beauty of plant life, ever dying and being reborn.

The hand of the Lord is evident over and over in His very sweet and tender provision. Here, Jai, here is an activity plan for Allistaire. She may never get out of contact isolation because of VRE, but you may escort her through the halls of the Unit as you don the pale yellow gown and blue gloves. Just don’t lick the walls. Check. Christy, the Unit manager, joins me on one of our walks and asks if there is anything they can do to help me in our stay. She jots down a few notes of instructions for nurses so I don’t have to repeat the same thing every morning and nap time. We prioritize clustering care primarily at night. I sleep well, getting a few three plus hour spans. At 2am, the nurse and CNA coordinate their actions in the fastest bed change the world has known. It really was Youtube worthy. The massive hydration that comes with chemo got the best of her. She thinks she was just sweaty and won’t be convinced she wet the bed. They pound out vitals, eye drops, meds, check the dressing, measure the urine and labs.

“Life doesn’t have to be perfect to be wonderful,” so says my toiletries bag. It preaches to me every morning.

I have been cut off from the life we had, the life we tentatively, tenderly hoped would last. I am cut off from common and desirable achievements. I am forced into a position of need. I must ask for my food to be heated. I ask for milk, for cups, for wipes, for towels. I ask for clarification on the difference between the MLL (Multi Lineage Leukemia) gene rearrangement and Mixed Lineage Leukemia. I am ever asking, holding out my hands in need. I can only ask for daily blood counts and watch as something outside myself fights the beast that threatens to tear away my child’s life. I can only watch the strange dark blue of ocean drip down and flow through the tubing into her veins.

My heart is not proud, Lord,
my eyes are not haughty;

I do not concern myself with great matters
or things too wonderful for me.

But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.

Israel, put your hope in the Lord
both now and forevermore. (Psalm 131)

It is not within my grip to decide her course. That is the Lord’s burden to carry. As for me, I am entrusted with kisses on the forehead, light sleep that attends to small moans and cries, to encouraging another bite, the tracking of fluid intake, attending to the course of the Chlorhexidine wipe as it circles her flesh to fight invaders, holding lines as we drive the IV pole to the bathroom, making sure Doggie doesn’t fall on the floor, clean clothes, brushed hair and teeth, encouragement to submit to the nurse with the eye drops, saying no to another movie and suggesting an activity, reading books, ears attentive to her words, stories and songs, standing in the circle of doctors, being alert to all her steps forward in this tedious process of conquering this ravaging disease that is clamping out the life of little Howie down the hall. So very little is mine, but I am determined to carry this responsibility with great care and honor that I should be asked to walk these days with her.

And above it all, on every side and saturating every act, I choose to worship. The Lord set the Israelites free from enslavement so that they might worship Him. That is the whole point of freedom. That is life abundant. To know the Lord is to worship Him, to blush and bow the head at His unspeakable beauty, to stretch back the throat and raise hands to the sky, to feel your whole self, every cell pressed forward in adoration of a God who defies our finite logic. He has enslaved me to this place and this disease that I might worship Him. He has constrained me and cut me off so that I can stand from a different vantage point, so I can witness Him from another angle.

Down the road from our house there is a sign that comes into view as you round the corner. It is a historical marker that tells of Lewis and Clark coming through this very place on their journey to explore the west, to report back about this land so unknown to those far off in the East. They told of mountains of such scale that they defied comprehension. Likewise, Thomas Moran provided the first glimpses of the colors and landscapes of Yellowstone which seemed only possible in fiction. I am certainly not the first to enter this land in which I now dwell, but I feel compelled to report back, to describe the colors of this place. To be “a witness,” to “testify,” conjures up highly undesirable connotations in my Christian experience. They are words from which I have always fled as they raise images of door to door salesmen. But I can’t help myself. I cannot keep my mouth shut, I am compelled to testify. I am compelled to lend my voice as a witness. The colors of dark, of black, red and grey cut and burn. The smells sear into my memory. But so too are there flashes of translucent purple, liquid honey yellow, tender bright new green and deep, deep blues of refreshing. This is my frontier. This is my land for exploring, of gasping terrors and vistas that dazzle so utterly as to render silence and gaping mouth.

There is so very little to put my hand to. But I can do this – I can keep my eyes wide, my ears alert, my heart open, throat vulnerable, palms outstretched. I can go on asking and asking. I can be in need and delight as filling comes. I can open my mouth and speak. I can cry out – “Father, Father come back, oh don’t tarry, oh don’t hold back, do you see what horrors happen here? When will you return and bring healing. When at long last will this suffering cease? Don’t tarry, don’t delay. Mercy, mercy Lord. I call for your mercy. I boldly enter the throne room of grace and in the name of my savior Christ Jesus I call you Oh Living God of the Universe, oh You beginning and end, You alpha and omega, I am calling for You to be faithful to Your name! And with smile that my flesh can’t contain, I can with faltering voice and lacking eloquence, declare the beauty of a good God whose good explodes that word in infinite dimensions and proportions because He simply will not be constrained by me and my little ideas and understanding. I will walk through every day and every circle small and circle wide and ask that He show me His face, that He hold me up that I might see Him from valleys low and rock faces high and sweeping. I want to see you Father in storm, in quiet clear dawn, in approaching evening, in forest glade and in desolate wilderness. I have witnessed the Living God, the mysterious God who lacerates and binds up. I choose to worship. And this is worship: I choose each day to apply my heart, hand and mind to the work you have given me – to love Allistaire and to love every nurse, doctor, CNA, Unit Coordinator, Environmental Services worker, Starbucks employee and person that I pass in these halls with a love I ask The Lord to continue to grow. Make my face radiant Father as I lift my eyes to You!

A couple little details: The pictures showing Allistaire’s lines with blue is the Blue Thunder chemo (officially Mitoxantrone). She’s completed 3 out of 5 days of chemo and is doing well – no throwing up, slightly decreased appetite. Her fatigue has increased which means we’re back on the old schedule of a nice long afternoon nap. All her labs look good. The blasts have not reappeared which is to be expected as her blood counts drop. Today both her platelet count and hematocrit were at about 25. She will get red blood when her hematocrit reaches 20 and platelets when they reach 10. At home she had just finished all of her meds with the exception of Enalapril for her heart, vitamin D and Multi-Vitamins. She continues on these but now also has Fluconazole (anti fungal), Bactrim (antibiotic) and Allopurinol (helps clean out all the cancer cell gunk that spills into the blood during tumor lysis/death of cancer cells). Every four hours she gets eye drops to prevent complications from high-dose Cytarabine. The picture of Allistaire with the other girl is our friend Piper who is now 10. She was diagnosed with AML two weeks after Allistaire back in December 2011. She relapsed in November 2012 and got a bone marrow transplant in February 2013 and is doing well. Lastly, I have included a few old pics just to lend perspective. Note the same pink helmet from first diagnosis and a couple picks with Piper from diagnosis and first relapse. Only four more days until Sten flies in and five before Solveig, JoMarie and Lowell get here. We are excited!!!

Nov10

Roadmap

Posted on November 10, 2014 by Conglomeration of Joy

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I’ve been to Target several times since leaving home. I keep thinking of things I’ll need in the hospital to streamline my life. Living in a hospital takes strategerie. Now, if you’re there for a few days, even a few weeks, you can just sort of role with the discomforts, annoyances, and inconveniences of hospital life. But that’s not what we’re up against. We are facing months and months of living in the hospital. When Allistaire relapsed the first time, she lived in the hospital for one hundred and forty-eight straight days. I was there for most of that. And living in a hospital is like living in a foreign country where things are just done a different way than at home and you can’t access the things you have come to expect and need. There are awesome upsides to hospital life, like – I never have to clean the toilet or buy paper towels or launder my sheets. I have free, crazy fast wi-fi and more cable channels than you can imagine. But on the flip side I have to accept that people will be coming in and out of our tiny little space all day and throughout the night. There is almost no privacy. One learns to sleep on strange pull-out-couch-beds with lights, clicking sounds, beeping, alarms, frequent calls for your attention, for assistance. In the morning, I gather my things in a Trader Joes’s bag and walk the 100 yards down the long white hall to the showers wherein I don my purple plastic flip-flops.

It’s weird how normal all of this feels. The last two mornings Allistaire and I have enjoyed the quiet of the Hem/Onc infusion clinic on the weekend. The normal bustle of the hospital is replaced by emptiness and calm on Saturdays and Sundays. We go check in with the nurse who must “lay eyes on her,” before she can order up the chemo from Pharmacy. We know our usual rooms we are assigned to because Allistaire is in contact isolation until the end of time, due to having VRE (Vancomycin Resistant Enterococcuss). We joke with the nurses, many of whom we know. The nurse practitioner drops by to say Hi and says how sorry she is, with tears in her eyes. It’s all the same, the same routine, round and round. We have been here countless times before. There is odd comfort in that. But it is a comfort that also leaves you agitated because it all still feels so fundamentally wrong.

Allistaire has been doing alright, often cheery but no longer her normal self. She’s getting more fatigued, cries more easily and can become overwrought by the smallest thing. She has intermittently been in pain which mysteriously comes and goes. On Thursday when Sten flew home, I had to give her four doses of oxycodone to address her strange back pain. Now it’s gone. At another point she suddenly bursts into tears that her foot is hurting and she struggles to walk. The last few nights she has woken me four or five times with crying in her sleep. I go to her and ask if she’s in pain; she is disoriented and says No. On Friday morning, she had surgery to place her Hickman Line. It hurt my heart. Her body has no massive scars but rather a myriad of small ones, four biopsies of leg, back, lung and arm, nineteen bone marrow tests has created a scarred dent on the lower right of her back, four scars on her chest and neck from the previous two Hickman’s and now this new one with its tender wounds. There hang those handy but wretched “tubies.” All these outward signs of the fight within. I’m finally getting over my denial. Her hematocrit had dropped to 32. I was finally ready for her to get chemo. I finally unpacked my bags last night.

Once again, our life seems to have been shattered and in a disarray. I knew this could happen. I knew that if I took Allistaire to the doctor, it could be like willfully walking off a cliff. So I stalled and I hoped it was all nothing and would simply go away. The last two weeks have been a whirlwind and simultaneously brutally slow in determining what lies ahead. Because, man I just want to know. I just want to know what we’re doing here and how it’s all going to work out. I walk through the grocery store and see Thanksgiving napkins and turkeys. In Target all the Christmas decor is emerging and it sounds so lovely to be planning for a big family meal and a pretty mantel and tree. They are all pinpricks, little relentless jabs that remind how different life is from how we thought it would be, how we long for it to be. Friends inquire when they can come visit and I look out into the night and see no landmarks, nothing to give perspective on distance and time. I scan the horizon and all I see is void.

I suppose they name it a “Roadmap,” to make you feel a little better, to inspire some confidence that we all know what we’re doing here. We have purpose. We have a plan. We have a roadmap. And we do have a plan and I really can’t complain. It creates some framework, some structure to the days ahead. It feels like we get to be intentional, well thought out and that gives the impression of control. And oh how we hope it is not an illusion but actual control, actual power over those wily cells, so resilient and persistent. The Roadmap says that Allistaire will receive 7 days of Decitabine, each for a one-hour infusion. She will then have four days off, her last days of freedom before being admitted to the hospital on Wednesday, November 19th. Starting on the 19th, she will receive an infusion of Mitoxantrone, Etoposide and Cytarabine each day for five days. The next twenty-four days will be a matter of waiting for the chemo to takes its effect, protect against infection, address pain and nutritional needs and provide platelet and red blood transfusions due to her decimated bone marrow. Once her marrow has sufficiently recovered, thus also giving any remaining cancer cells time to recover, another bone marrow test and PET/CT scan will be done around day 28.

Beyond December 17th, I have really no clue where we’ll be. If this round of chemo fails, it’s very possible we’ll head to Denver for the DOT1L trial. If, gloriously, she’s in remission sufficient for transplant, then conditioning (chemo & radiation) for transplant would begin in earnest. In order to have a transplant, however, she needs a matched donor. In March of 2013 when they searched the world for a donor for her, they only came up with 2-3 possible options, none of which were in the United States. I just received paperwork from SCCA (Seattle Cancer Care Alliance) about reinstating the donor search for her. I was blown away when I read that there are 22.5 million people world-wide that are registered donors, and yet – there were less than a handful of options for her last time! That’s wild! That tells you how critical it is that more people join the registry because our genetics are so diverse and are becoming more and more so as ethnic groups intermix and have children together. So we pray again for a donor.

I have to say that I’ve been feeling pretty down about Allistaire’s prospects. I think if she can get to transplant, then she has a shot, a very narrow, small shot, but a real chance nevertheless. But I look back to the last time we tried all sorts of chemos to get her in remission and absolutely none worked. I was encouraged though last Thursday when a mom that I met said that this DMEC round is what put her son into remission for his third transplant. I met her at a little party I was invited to. But really, it wasn’t little at all. There may have been less than 20 people in the room, what we were there to celebrate is phenomenal. You see, a nine-year old boy, Zach, died last January after complications from his third transplant for AML. In all the years that Zach fought cancer, his parents, Julie and Jeff, were determined to scour the earth for options to save their boy. They had the resources to execute a phenomenal search for Zach’s cure. Their journey led them here to Seattle to Seattle Children’s and Fred Hutchinson Cancer Research Center. They began to work with Dr. Phil Greenberg at Fred Hutch as he and his lab were advancing the potential to use TCRs (T-Cell Receptors) to destroy cancer cells. “Data from early phase clinical trials have demonstrated the capacity of high-affinity TCR Tcells to eradicate leukemia in individuals who have relapsed after a hematopoietic stem cell transplant.” (Quoted from the Juno Therapeutics website where Dr. Greenberg is one of the scientific founders). The death of their son, Zach, has only fueled his parents’ passion to work even harder to bring better options to kids like Allistaire who have very difficult to treat AML. In the course of the last twelve months, Julie and Jeff have spearheaded fundraising efforts to benefit Dr. Greenberg’s lab that has provided 1.7 million dollars to further his research.

Their efforts and the generosity of so many people combined with the countless years of tireless research by not only Dr. Greenberg and his lab, but many others at Fred Hutch and Seattle Children’s Research, have yet again intersected with our lives. Apparently Allistaire’s school pictures arrived after we left Bozeman. I realized yesterday that I never cleaned out her little cubby with her paint shirt, gym shoes and pencil box. When we drove into a parking garage the other day she yelled out, “B!” I had no idea what she was talking about until I realized we were on Level B and again the cut twisted in, the combined joy of realizing she was beginning to learn her letters that would eventually enable her to read and the pain of knowing she would never return to preschool. That experience is forever cut out of her life. There are countless ways our lives are not what we thought they were going to be or so desperately wanted. But when I look back to August 2013 and consider where the doctor said we would be, Allistaire in the ground, I am heartily reminded that I have ever so much to be thankful for. And one of those gifts that extended life has produced is the possibility that Allistaire might be the recipient of these marvelous genetically modified T-cells. I had the chance to speak at the party for a few minutes and tell Allistaire’s story. I told the story to the members of Dr. Greenburg’s lab, each amazing scientists in their own right and the majority of whom are women. There were many red faces with tears. Allistaire was there to be the tangible reminder of why they work so hard. We had the chance to talk with Dr. Greenburg briefly. What an unexpected gift all around.

I look out into the void and strain to see landmarks showing the way ahead. I just can’t. I just have to dwell in the present. That’s not so bad really, I mean it’s contrary to what my nature prefers, but the Lord has given me weapons to aid me in the fight to rest. Isn’t that ironic, I must actually fight, wrestle to rest. But that’s what this battle actually is at its core. So, I eat the manna, God’s provision for me this day. I rejoice knowing He has gone before me and laid down provision up ahead. He opens and closes doors to guide me along the path He has chosen for us. He holds Allistaire in the palm of His hand. I could really go on and on and on about The Lord’s all sufficient capacity to care for us. This is what I do when the dark waters rise and threaten – I focus my eyes not on trying to see the way ahead, but rather I fix my eyes on Christ, being reminded that He is THE way. My friend Betty, showed me this great profound and simple passage in 2 Chronicles 20. The Israelites are surrounded by invading armies, and they sum up their battle strategy with this as they cry out to God, “We don’t know what to do, but our eyes are on you.” Perfect.

On a side note, I will be putting out a post in the next couple days on specific ways to help. For now, I have updated the page, “How to Visit & Send Mail”

The first few pics below document Allistaire’s previous two Hickmans. The first was at diagnosis in December 2011 when she was 21 months. This one was removed in May 2012. She got her second Hickman upon relapse in February 2013 just before she turned 3. That one was removed in March of 2014 when she turned 4. And here we are at number 3 with her second relapse in November 2014 at 4 1/2 years old. Unfortunately the surgeon was unable to put it on her right side again, but everything went smoothly on the left.

A few links worth checking out:

Juno Therapeutics

Zach Attacks Leukemia

Fighting Fire with Fire

Be The Match

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.