Tag Archives: relapsed AML

Dec10

A Thousand Barricades

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IMG_1926Written yesterday:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_1918 IMG_1921 IMG_1923 IMG_1925 IMG_1928 IMG_1931 IMG_1933 IMG_1939 IMG_1941 IMG_1944 IMG_1946 IMG_1949 IMG_1953 IMG_1956 IMG_1959 IMG_1961
IMG_1966 IMG_1975 IMG_1979 IMG_1982 IMG_1985 IMG_19863 Years ago, December 9, 2011:

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Nov21

I Choose to Worship

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IMG_1677Perhaps 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!!!

 

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Nov18

Dread, Hope, Dread

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IMG_1612I know I should go to bed but I know that when I do, tomorrow will hasten its coming.  So fast it will fly and then we will have arrived on the threshold of that day we must enter the hospital.  I strain to slow my steps as though I can with force of will prevent the series of events which will come, which must come to bring us to Wednesday morning.  The halls are bright with light and the colors, blue, orange, green are meant to be cheery, modern.  But to a prison cell it feels we are being sent.  And the dread is not because of the annoyance of people perpetually coming and going or the fact that we are closed into a tiny space where no normal advances of life can take place, where we are stunted in 4 hour cycles of vitals.  No, that is endurable, that is bearable.  The dread, though weighty, sinks slow and silent, settling firmly in my heart, in my gut.  Will she ever leave again?  Will the sweet small child who walks through those doors ever, ever return?  I KNOW what happens in that place.  I know what terrors lurk.  I feel as though I’m walking my child to the gallows.  I’m doing this, in her innocence, I lead her into that place.  But I have no other choice.  I must hand her over.  It’s breaking my heart to know what will soon be done to her, again.  How can she endure?  She is so small.  And she must do it all over again for a second time.  My heart tears with screams – how can I be forced to choose between these poisons and destroyers of chemotherapy and radiation, and her death?  Neither are good!  I despise being crammed in this wretched crack of murderous choices.

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

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

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

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

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

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

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

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

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

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

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

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

Explanation of TCRs from the Juno Therapeutics Website

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Nov12

How to Help – Round 3

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IMG_1547Sten and I sincerely appreciate all of the many inquiries and offers to help us in this challenging time. Many of you have already helped us so much and continue to offer more.

One thing I feel compelled to note, is that every single time you reach out to us, to cheer us on, to cheer us up, to say that you’re thinking about us, that you’re praying for us – all of it is so appreciated and spurs us on.  Please do not get discouraged if we do not respond back to you as quickly or frequently as you might like.  Please extend us grace.  I know a lot of people imagine we sit around in the hospital all day, but it is surprisingly busy and because our lives are literally consumed by the tedious, unrelenting fight against cancer, sometimes all I want is 30 minutes to veg out on a movie.

The other more important point is that you should never stay silent because you feel your words are lacking.  You are right that your words are insufficient if you expect that your words can make this all better and fixed, but we know that is an absurd goal for mere words.  But wrestling and groping to put words to your heart is an action that in itself demonstrates great love toward us.  When we put in the effort to try to pin down these immense feelings and aches and joys, we possess them more, we take ground, we gain ownership, we are more full and that is a blessing not only to us, but to yourself and it increases your ability to love others as well.  So, don’t think your words have to look all pretty, just try and that will be a bounty to us that far surpasses words that feel so small.

Lastly, life here at the hospital feels like a tsunami has carried us away from our home, our life.  While we appreciate all of your well wishes toward us, please don’t cut us off more by depriving us of the joy of knowing what’s going on in your life.  If you and I have a relationship, and you are not simply an onlooker, know that relationships are two-way and I still really care what’s going on in your life.  Don’t hold back the details because you think you’re trials don’t compare to ours.  Yes, our reality lends perspective, but we all have joys and challenges, extraordinary and ordinary, and I want to hear about it.  I want to know about the weather back home and what you did last weekend.  Send me a text every now and then of that great big sky or snow sticking in your hair.

 

Here are a few things that would be super helpful:

  • Pray for us
  • Text or call us up on the phone and even if we don’t pick up or call you back, know that we have felt the love
  • Send us a card and better yet – a picture of you to remind us of all those caring for and supporting us
  • Gas cards (Costco, Exxon)

 

For Sten and Solveig specifically:

  • Bring Solveig and Sten a meal. We have set up an online meal schedule which will give you all the details. Go to “Take Them A Meal” 
  • You can then sign up to bring them a meal on a Monday or Wednesday. Please look over what other folks are bringing so they don’t end up eating the same thing for a week or two straight.  Please note that Solveig is allergic to ALL NUTS so please be careful to avoid including nuts, even things like peanut oil.
  • If you’re not much of a cook or in a hurry but still want to help out, a gift card would be great (Co-Op, Papa Murphy’s, Town & Country, Ale Works, Pizza Campania)
  • If you have other ideas of how you may want to help, please contact our beloved sister-in-law, Jess at (406) 850-3996
  • Sten & Solveig’s mailing address in Bozeman: 14176 Kelly Canyon Rd, Bozeman, MT 59715

 

For Allistaire and Jai specifically:

  • Please don’t send stuffed animals, blankets, crayons, makers, coloring books or sticker books = we already have SO many 🙂
  • You can sign up to bring Jai a meal on the “Take Them a Meal” website.  Allistaire will have her food provided through the hospital.
  • Gift cards to local grocery store and restaurants (University Village, QFC, Pagliacci Pizza, Metropolitan Market, Starbucks)
  • If you want to send something to cheer up Allistaire, here are a few ideas: mixed CDs with happy music, small toys, lip gloss, small art crafts, happy decor for her hospital room
  • One thing I’d love is a few great DVDs that help her learn her ABCs (FYI: I think we have all the Leap Frog options at this point.  Thanks!)
  • Address for Allistaire & Jai:  Ronald McDonald House, Attn: Allistaire Anderson, 5130 40th Ave NE, Seattle, WA 98105 or starting 11/19 we can also receive mail at the hospital: Seattle Children’s Hospital, Attn:  Allistaire Anderson, 4800 Sand Point Way NE, Seattle, WA 98105

 

If you want yet more ways to help, have I mentioned that you can donate blood and sign up to be a bone marrow donor?  This is a gift that not only blesses Allistaire but many others as well!  If you do donate blood or sign up for the registry in Allistaire’s honor – please make a little sign saying so and send me a picture of yourself in the act so to speak!

To donate blood in Montana: United Blood Services

To donate blood in western Washington:  Puget Sound Blood Center

To join the bone marrow registry:  Be The Match

 

Do you just have more money than you know what to do with?  Here are three phenomenal places you can give to that directly support Allistaire and both children and adults with cancer:

Seattle Children’s Hospital (of the $3,800,000 dollars spent on Allistaire’s treatment so far, the $600,000 that insurance did not cover has been covered by the hospital’s foundation)

The Ben Towne Foundation (aims to create targeted therapies to cure pediatric cancer without the use of chemotherapy and radiation)

Fred Hutchinson Cancer Research Center (to whom we are indebted for Allistaire’s last transplant, Dr. Greenberg’s lab which we are holding out hope may offer amazing modified T-cells to target Allistaire’s cancer after a 2nd transplant, and just lots of amazing science that benefits a wide range of cancer patients)

 

Thank you immensely for all of your kindness, generosity and love toward us. You certainly diminish the weight of our heavy load and add joy to our lives!

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Nov10

Roadmap

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IMG_1466I’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

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Oct28

Every Day Is A Gift

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IMG_1303Every Day is A Gift.  That’s what Sten’s dad says, a lot.  It can sound trite.  It can sound flippant.  But it is a truth we rarely look at in the face.  It is a gift so like the breath we breathe that we rarely even consider it.  It is a monumental truth that deserves constant thanks.  There is, however, a dark side to this truth.  Every day, life can be taken.  Every day, life can turn in a flash so that what seemed so predictable, so dependable, so unchangeable, is shown to be in actuality – well, flimsy, not as anchored down as we thought.  In a breath, the whole landscape of our lives can change. It did for my dear friend’s father on Tuesday when he was diagnosed with a rare gastrointestinal cancer.  It did for a little four-year old in Bozeman on Wednesday, as she and her family were uprooted and sent to Denver to fight her Acute Lymphoblastic Leukemia.  It did for us on Friday.

Allistaire’s very first day of preschool began in a way I could not have imagined.  On September 3rd, I woke Allistaire up early to get dressed in her little blue plaid jumper, the required dress for school.  She wore the button up white shirt with the Peter Pan collar and white knee-high socks.  She looked adorable, with the exception of her constant crying and moaning.  Her arm hurt she said.  Fear.  Fear like a long sliver pierces my mind.  It’ll go away I thought and good grief now the cute picture on your very first day of school is ruined.  It was already an enormous deal that Allistaire was going to school.  Going to school marked a victory of which few would even be aware.  She looked like a normal little girl.  Who could have guessed one year prior she was given a 5% chance to live.  Who could begin to imagine by looking at her in that sweet little jumper, that this girl’s life had been pressed up against the door of death multiple times.  Going to school meant victory, meant life.  And there was this unexplainable, out-of-the-blue pain.  Though she seemed to be in pain during that first school day, by the time I went to pick her up, she was chipper and said her arm felt fine.

Before cancer, I was a pretty laid back mom when it came to health concerns with my kids.  Most things seem to go away on their own and rarely it seemed, could a doctor help with most of their ailments.  “It just has to run its course, ” seemed to be the standard response.  In general, I have a “buck-up,” and don’t’ make a big deal out of it attitude.  In the weeks leading up to December 1, 2011, I explained away Allistaire’s fatigue, grumpiness, and lack of appetite with ear infection, teething and still trying to get over a cold that had required antibiotics.  It was not until she turned the color of a macaroni noodle did it occur to me that something might be off.  Who could have guessed their 21-month old had cancer?  So these days, every single blip must be rigorously analyzed and evaluated.  Every time she falls asleep in the car, I turn the situation over and over in my mind to see if some angle might reveal evidence of cancer.  So it was with her arm pain.  It came and it went and mostly it just wasn’t there.  She didn’t really want to raise her arm and I kept feeling diligently for evidence of enlarged lymph nodes in her arm pit.  When she relapsed in February 2013, a lymph node in her left arm pit grew to the size of a golf ball in a matter of a few days.  I tried to talk myself out of getting too concerned.  It’s probably nothing.  It’ll probably go away.

On Tuesday, October 14th, Allistaire went to her scheduled appointment to see her pediatrician, Dr. Angie Ostrowski.  Her labs looked great.  There were a few small lymph nodes in her groin but nothing alarming, just something to watch.  The trauma of the day was getting blood drawn and then five shots to continue to catch up on her immunizations since all of hers were wiped out with transplant.  After her appointment we went over to the Montana State University campus to help promote the Bone Marrow Registry Drive.  It was a joy to get to speak in front of a few classes and approach groups of students in the Student Union Building to encourage them to register.  I was delighted to see how responsive many people were.  I even had the joy of meeting an older man who overheard me talking with some students.  He approached me and said that he had received a bone marrow transplant  from Fred Hutchinson Cancer Research Center for AML back in 1978.  Wow!  That was at the very beginning of transplants.  Two hundred and sixty-three more people were added to the registry as a result of that day’s efforts.  I went home that afternoon with an exhausted little girl but a comfort in my heart that we had passed through one more hurdle with such great labs.  The next step was to head to Seattle in late November for routine appointments with Dr. Carpenter and the cardiologist.

This Thursday morning she woke up happy and full of joy, but at some point during her bath, started to cry about her arm hurting.  She cried for a while and then she cried again on Friday morning.  It was hard to tell if she was making a big deal out of things.  But clearly she was hurting.  I hoped somehow it was growing pains.  But she had a very hard morning at preschool and I was told she cried several times.  In gym, she ran with her right arm just hanging and didn’t seem to want to use it.  Her teacher asked her multiple times if she should call me.  Allistaire was empathic that I was not to be called.  But enough was enough.  I was taking her in.  I called and was able to bring her in right away to see Dr. Ostrowski.  By the time we arrived, Allistaire glibly declared that her arm didn’t hurt.  She expressed no pain during her exam except for one bizarre moment when she went from laughing to instantly crying and having a hard time catching her breath.  She denied crying however.  Perhaps she did not want to acknowledge the pain for fear of what that would mean.  She had labs drawn again and X-rays of her arm and chest.

We waited for quite a while in that little room.  Allistaire fell asleep in my arms.  I called out to God in bewilderment, aghast and astonished that it was possible some awful reality was about to be exposed.  I asked how many times I would have to wait in small rooms waiting for the swing of my life to be revealed.  It came to me to read Psalm 34.  To be honest, I read those words and wanted to cling with hope to their truth.  “I sought the Lord, and He answered me; He delivered me from all my fears..The righteous cry out, and the Lord hears them; He delivers them from all their troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit.  The righteous person may have many troubles, but the Lord delivers him from them all.”  But I wondered, what is the meaning of these words, for I have watched my own life forced to walk directly into my deepest fears.  I have known others who love the Lord who have not known the deliverance of their child’s life for which they pleaded so long.  Help me to understand these promises Father.  I know the Lord delivers, but I also know He often does not deliver in the way we imagine He will or should.  When the Israelites were enslaved in Egypt and God at last sent Moses to ask Pharaoh to let the people go, I’m guessing they would have preferred to have been released immediately without having to experience any of the plagues.

The door opens, Dr. Ostrowski lab-top in hand, and a look on her face that makes my heart sink.  “The X-ray looks very concerning,” she told me.  She proceeded to show me the hazy outline of the top of the humerus bone that indicates some sort of breakdown.  It should be a smooth clean edge, but it’s not.  Something’s going on there and an X-ray can’t tell us much.  An MRI would be much better at giving a detailed, accurate picture that could also show the soft tissues.  Her labs looked good but clearly something is not right.  The one lab result that was not normal was her CRP (C-Reactive Protein) level which is a marker of inflammation.  Her’s was 19.6 and should be 3 or less.  After talking with Dr. Gardner at Seattle Children’s, I’m told that we just need to get to Seattle.  We have to look in her marrow.  I ask Dr. Gardner if this could be akin to the time prior to transplant that Allistaire stopped walking because of pain in her knees that was the leukemia pushing out of her marrow into her bones.  The answer was yes and this sort of bone pain is a way some kids will present with leukemia in the first place.

In one heartbeat I saw the potential path of my life unfurling out in front of me.  To Seattle?  Relapse?  Again?  Last time she relapsed it resulted in eight months away from home and nearly losing the fight multiple times.  It’s been twenty months since she relapsed and we are literally just getting to the point where life was looking like it might have returned to some normalcy.  I didn’t even have to try to imagine the road before me, I knew it already.  I knew it all except that final point.  Death.  I have not had to cross over to the other side to the death of my child.  I was not even sure what treatment they could offer her.  I knew a second transplant would be a likely option, and wow, how utterly overwhelming.  Every single thing about it felt overwhelming.  Dr. Ostrowski and I sat there bewildered with tears in our eyes, neither of us able to take in this insane reality.  We left the office shaken and with the task of packing up in one day before we left to Seattle on Sunday.  Allistaire was scheduled for 8am labs on Monday, 9am visit with Dr. Gardner and a 9:40am bone marrow biopsy.  Not one bit of life was either known or predictable beyond that point.  The texts and phone calls began in a flurry.

Allistaire kept crying out in pain so I stopped at Town & Country (our local grocery store), for some pain meds.  I couldn’t stop crying.  I couldn’t look the checker in the eye.  I handed him my credit card and he asked what was wrong.  I told him my daughter’s cancer may be back.  He said he’d pay for the Tylenol and waved me on in compassion.  Within minutes I had a call from Ashlei, our social worker from Children’s.  She’d already put in a call to Ronald McDonald house but knew that it was packed out.  She was working on an application to Alex’s Lemonade Stand to ask for money for a hotel when we arrived.  Fifteen minutes later she called back to say that she been told that we should have a room at Ron Don Sunday night, and if not Sunday, for sure on Monday night.  In the midst of my tears, I had to smile at our good fortune.  A free place to stay and appointments scheduled just as rapidly as could possibly happen.  It was stunning.

We made our way home and decided to continue on with our Friday night pizza and movie tradition.  What else should we do? Sit around and cry?  Plus, I was raging hungry.  All I’d had to eat the whole day was one cookie.  When Sten walked in with Solveig, I told her to come sit down beside me on the couch.  With eyes wide, she said, “I know it’s something bad.”  We told her Sissy’s sickness might be back and that we had to go to Seattle and we didn’t know for how long.  She cried, tenderly hugged Allistaire and then the two of them spent the rest of the evening frolicking and laughing and enjoying their movie.  Sten and I were just in shock and already ever so tired.  We made all the phone calls and told all the necessary people and we sat in silence at the counter knowing what could be before us.  We went to sleep knowing we might have one more day all together at home.  As we lay in the dark, in tears Sten said that he was afraid.  “This feels like the beginning of the end.”  Yes.  We both know this is a real possibility.  In the night I wake up to go to the bathroom and feel the carpet underfoot.  From hence forth I may walk on cold linoleum to the bathroom.  I may go to sleep at night again with people moving all around and lights and beeping and sound that disrupt.  I shudder at the thought as I look out into the silent darkness of my house.

The next morning I arose early and went out into the cold morning dawning.  I saw the last few stars and heard the calming rush of wind in the dark evergreens on the hill.  To the southwest, the new snow on the Spanish Peaks, broke white into the blue of sky.  Every joy, every pleasure feels like a cutting, a gouging out.  Each highlights what is at stake of being lost.  I headed into town to meet with any who wished to pray together.  I felt a bit foolish.  Perhaps I was being overly dramatic.  When my dear friend, Hope, asked if there was anything she could do, I thought yes, yes, how I have longed to gather together some of those faces that have so faithfully and generously prayed for us these last several years.  If she had indeed relapsed, I knew there would not be such an opportunity again for a long time.  As I looked around the room at the faces gathered there and as prayer after prayer went up, beseeching the Lord, I felt so overwhelmedly blessed.  Look again Jai at the bounty He has bestowed upon you.  That so many hearts would yearn, alongside mine, to both see Allistaire healed and the Lord glorified – I felt my heart and faith swell.  The Lord had reminded me of the story of Shadrach, Meshach and Abednego who were thrown in to the furnace by King Nebuchadnezzar.  There in the furnace with these three men, King Nebuchadnezzar saw a fourth man “walking around in the fire, [who] looks like a son of the gods.” I may be thrown into the fire.  The Lord may allow it, but behold, there walks with me Christ, the Son of God.  Our time of prayer was worship and praise for a God who is able to deliver and is faithful to His promises.

I could only bring myself to pack for the short-term.  If we would indeed be forced to be away from home for months, I would deal with that later.  So we packed on Saturday and headed out Sunday morning.  This is my eighth drive to Seattle in the last twelve months.  It’s beautiful and every single time I wonder if I’ll make it home.  When I walked out of the door that morning, I wondered, once again, would Allistaire ever return home?  Would she return home to live or to come to die?  I push against the thoughts and force myself to walk down the stairs and get into the car.  We’d had word that there was a room for us on the third floor of Ron Don and when we arrived, every smell hit me as familiar, and sorrow and home.  Each face that greeted us showed grief and compassion and mixed joy with seeing us again and comments on how tall and mature Allistaire seems.  What an incredible gift it is to have a small bit of space to call your own and drawers in which to store your things – a little island in a stormy sea.

This morning was, well, hard and hilarious.  The hard was Allistaire’s absolute terror about getting an IV placed.  Sten held her down, pressing his legs against hers to prevent her from kicking any more, his arms encircled her to keep her still but with red face and wild eyes she screamed, “NO,” over and over, “I don’t want a poky.”  They blew the first vein on her hand and eventually got someone else to try again further up her arm.  We three were hot with sweat from the stress and horror of this required confrontation.  At last it was finished and the vial was full of blood.  I moved to get Allistaire a tissue and hit the inside of my ankle hard.  The pain was quite shocking and far worse than seemed reasonable.  I went to sit back down and told Sten I felt like I might pass out.  And then I did.  Sten says I was out for 30-45 seconds and I awoke only after the nurse began vigorously rubbing the top of my breastbone.  I quickly declared that I was fine because even in my disoriented state, I understood that I felt pretty dumb for causing such a ruckus when it was Allistaire that should have been being cared for.  While Allistaire was later in the procedure room getting her bone marrow biopsy, I visited with Ashlei, our social worker.  “Were you the Code Blue?” she asked after I relayed the story of passing out.  Oh dear.

So, Allistaire’s labs looked great again and Dr. Gardner could not feel any lymph nodes either in her arm pit or groin which was a relief.  The plan is this: We will get bone marrow test results back tomorrow.  If the bone marrow is clear, we will go ahead with an MRI scheduled for 7am on Wednesday morning.  If the Flow Cytometry on the bone marrow is clear, this will give us hope that something else could be going on in her bone.  However, they still want the MRI because it could show the classic signs of a leukemic infiltrate that is isolated to this one part of her body.  If this were the case, they would then schedule a biopsy of the bone to confirm leukemia.  If the MRI results were not definitive, they would also do a biopsy.  If however, the bone marrow biopsy shows leukemia, they will do the MRI just as information gathering.  Dr. Gardner said that at least there’s a ray of sunlight if Allistaire has indeed relapsed.  I was incredulous that there could be a ray of sunlight with relapse.  Apparently a very promising new drug, DOT1L inhibitor which specifically targets the MLL (Multi Lineage Leukemia gene rearrangement that Allistaire has) is currently in trial.  Even through it is still only in phase 1, I am told there is a lot of hope that this drug will be very effective.  It is exciting as I remember it being talked about over the last year before it was available.  The bummer part is that the trial is in Denver and the other major bummer is that it would be used in an attempt to get her into remission for a second transplant.  Daunting.

I’m tired.  It’s nearly midnight.  We’re only a few days into this thing.  When I think about what may be before us, even in the best case scenario that she doesn’t die, it is overwhelming.  I was just starting to allow myself to look down the road of my life and start setting goals.  If Allistaire has relapsed, this fight once again moves to the forefront, forcing everything else to the back.  Yeah, I’d really like to keep running and developing my friendships and learn to do silversmithing, but the big ones are my marriage and my relationship with Solveig.  I am forced to leave everything in God’s hands.  In my Bible Study, we are studying the life of Moses and have just worked through the 10 plagues and the Exodus.  Each time God tells Pharaoh to let His people go, He says, “so that they may worship Me.”  Once they have been freed from Egypt, God gives them specific instructions on where to camp all so that the Egyptians will pursue the Israelites and God will have the opportunity to once again, show His deliverance in an amazing way that declares He is the Lord.  The directions regarding where to camp and by what road to travel seem odd, they put the Israelites into another hard place where they are trapped, this time up against the Red Sea.  Who am I to say what path my life should take?  The goal, the whole point of my life is that I might worship the Lord and in so doing, declare by this life God has given me, that He is Lord.  I have learned that to walk with the Lord is to know fullest of life.  So I choose to follow Him.  I see once agin, the two roads – one full of light and life and one dark and narrow.  My hand is gripped in His.  It is for He to decide and I know that regardless of where He leads, His Right Hand will hold me and sustain me.IMG_1244 IMG_0535 IMG_0542 IMG_0606 IMG_0908 IMG_0936 IMG_0968 IMG_0985 IMG_0994 IMG_1035 IMG_1045 IMG_1047 IMG_1080 IMG_1091IMG_0800 IMG_0830 IMG_0836 IMG_0856 IMG_0869 IMG_1145IMG_1211 IMG_1223 IMG_1225 IMG_1254 IMG_1255 IMG_1278 IMG_1290

Aug29

Another little girl, so alike Allistaire

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78664fa8-04b3-45d4-8744-03205fe8c0a2Friends, you dear people who have supported us so faithfully throughout this long and difficult journey…I don’t call you “dear,” lightly, you are precious and of great value to my heart.  You have been part of the great throng of people who God has used to hold us up through months and then years of struggle and sorrow, victories and defeats. You have been generous with your hearts, your time, your money and your prayers.

Today I implore you to pray on behalf of another little girl whose story so closely resembles Allistaire’s.  Now I am the one in your shoes, heart hurting from afar, prayers pleading up to heaven for God to show mercy, to make a way through and struggling to figure out how I can help.  Last December 2013, while we were in Seattle for Allistaire’s chemo and appointments, my friend Pam told me of a little girl named Stevie, who had just been diagnosed with AML.  She was just about 2 years old and was life flighted from her home town of Hamilton, Montana, two days before Christmas.  Her parents, Keshia and Michael, walked away from their life in Montana as students and joined Stevie at Seattle Children’s Hospital, to fight alongside her.  When I found out about this family, my heart and mind immediately was transported to our own horrifying December when our nearly 2-year-old beloved was diagnosed with AML.  I was able to contact Keshia and visit the three of them in the hospital.  I yearned, with a sort of desperation, to bring all that I had to bear to serve and care for and support these bewildered folk, whose story I so well understood.

Fortunately, Stevie went into remission after the first round of chemo, just as Allistaire did.  But the chemo weakened her heart and she was unable to receive the standard fourth round of chemo, the infamous big gun – Blue Thunder (officially Mitoxantrone which is combined with high dose Cytarabine).  Instead, she was given the FLAG regimen which is the standard first round of chemo for relapsed AML.  She continued to be in remission, finished treatment and moved home to Montana.  Sadly, this sweet girl only had two months of life at home until a routine blood test showed extremely low platelets and blasts.  Keshia and I were planning to meet up together in Missoula with our girls for lunch since I was headed that way to take Solveig to camp in June.  One day we were making lunch plans and excited to see each other and literally the next I was trying to take in the news that Stevie had relapsed.  I knew so clearly what relapse meant – transplant.  And I know what it means to have a transplant – first there is the hope that you can get into remission to even qualify for a transplant.  This process alone can take months.  Then you hope and pray for a match.  If you make it to transplant you hope the intensity of the chemo and radiation and all the possible side effects don’t take your child down.  Then there is the long, long trek out of that crevasse, trying to evade Graft Versus Host Disease while not endangering the body with defenses down because of immune suppressants.  The list of awful long-term consequences are something you can’t even begin to consider.  My whole heart went out to Stevie and her parents.

While  initially they were in Seattle for immediate care and confirmation of relapse, they quickly moved to Philadelphia for Stevie to be treated at CHOP (Children’s Hospital of Philadelphia), in order to be closer to family support.  Stevie’s heart had regained some strength thanks to Enalapril which is the same drug Allistaire has been on for her heart and will continue to be for up to five years.  So Stevie was now able to get Blue Thunder.  There was the long wait in the hospital for her blood counts to drop to zero and then for her ANC to rise again to at least 200.  Thirty-five days later, they were able to get a break and wait for results of the bone marrow test that would tell how effective the chemo had been at suppressing the leukemia.

Five days ago I got this text from Keshia, “Well we got the worst possible news today, the chemo didn’t do anything, and her percentage of leukemia is actually higher than when we got here.  And they said they will do another round (of chemo) but they don’t expect it to do anything and they don’t expect her to make it to transplant.”

This right here, this moment is when the dagger, hot, cuts right through your heart and you gasp and collapse and your eyes are wide because you cannot possibly begin to fathom what has just happened.  Every step before has been hard, excruciatingly difficult and wearisome, but this, this is an all together different reality.  You have now reached a precipice you wanted to block from your mind.  You have journeyed far and now you stand looking into a deep, black crevasse and you are absolutely terror-stricken.  You have not yet fallen and you hope desperately you won’t, but the possibility that you will be plunged into that suffocating, clammy darkness – it’s real, this is not a nightmare, this is your life and you feel yourself teetering and growing faint.

Not making it to transplant equals death.  There is no other treatment for relapsed AML.  If you are not in remission, you will not be offered the opportunity, the gift and horror, of transplant.  Why?  Because the odds are so low that you will survive, they won’t put you through it.

Every bit of Stevie’s journey comes at me in blazing, vivid detail of sight, sound, smell, touch.  I know rubbing your hand across the bald curve of your child’s head, of watching them sleep, of going to bed crying and waking with tears in your eyes.  I know the heaviness in your arms and legs that feels like you can hardly even stand.  My heart cries up to the heavens and pleads with the Lord, “Father, Father, please, make a way through for this little girl!  Have mercy oh God!  Hold up her parents.  Make your face shine before them.  Give them ears to hear your voice and pull their hearts to you.  Mercy, mercy, mercy oh God!”

This is the most recent update on Stevie’s Facebook page:

“Stevie’s leukemia did not respond to her re-induction phase of chemo. When we arrived at CHOP she had 26-36% blasts, and the results from her bone marrow biopsy tell us she now has 50-70% blasts. Whats next? We pray for a miracle. She is being admitted today for her next round of chemo, she has a 1 in 5 chance that her leukemia could respond. We pray for that to be the case, if not, we could potentially have to relocate to participate in a study, texas, Maryland, wherever we have to. Please pray for Stevie. For those of you who don’t know, Stevie has M7 AML which tends to be a little more unpredictable and harder to treat than other types of AML. Please pray for Stevie. You can help at youcaring.com/superstevie we are uncertain of the road ahead and need all of the prayers we can get.”

Please friends, I ask you, please pray for this little girl and for her mom and dad.  Please call out to the God of the Universe who is able to heal.  Pray for healing.  Pray that more than anything, Keshia and Michael would know the comfort that only He can give in all circumstances, even the darkest.  And please consider giving to them financially.  I know I have asked much of you, to give to further cancer research, and you have given so generously to our family.  I know there are many demands on your finances and so many worthy causes.  But here, here is another example of a child’s life, an otherwise healthy, happy, thriving girl, whose life is hanging on the hope that there is some medicine out there that will cure her, perhaps some clinical trial that will make a way through.

Allistaire was given a 5% chance of survival.  Her story is not yet complete, but she is alive, she thrives.  I hold out hope that Stevie can make it, no matter how small the odds.e93af59f-4cfd-4c15-86a1-07e4a354a7ed107284e6-a0a9-4bee-83c0-6da8d5162ca38e032fe0-c363-4dee-a20d-2f40e32d2fb36b9a4378-6273-4f53-bb7c-d344223dbbeb
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