Tag Archives: decitabine

Juicy

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IMG_2153Ours is a sanitized fight.  I have only ever seen two insects on the Unit.  One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass.  The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines.  How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth.  The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering.  The light is bright with cheery images on the walls and flashes of exuberant color.  Countless groups come to the hospital and to Ron Don to make the season joyous.  Gifts flow in and in and in.  Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire.  Everywhere love and support.  Ours is a fight with so many allies.

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

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

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

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

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

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

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

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

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

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

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

(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy.  I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)IMG_2149 IMG_2154 IMG_2155 IMG_2159 IMG_2160 IMG_2161 IMG_2164 IMG_2173 IMG_2181Allistaire with Papa sisters and cousins 1 Christmas Family Cancer Fears Me DSCN4804 DSCN4805 DSCN4806

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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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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Press On

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IMG_1435This 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.IMG_1379 IMG_1385 IMG_1401 IMG_1406 IMG_1408 IMG_1410 IMG_1415 IMG_1428 IMG_1429 IMG_1430 IMG_1431IMG_1399