Tag Archives: GVHD

Cacophony

Standard

IMG_2600Cacophony

Disparate.  Discordant.  Dissonance.

Turning this way and that, buffeted, battered.  Every angle met with contradictory force.  Joy, relief, yellow, bright splintered through with black, tears.  Flashes of bodies warm gone cold.  Flashes of giggles and bright eyes and stiff bodies born down hallways blocked from the eyes of the living.  Friends gone.  Gone.  Turning east, car seats empty.  We should NEVER go east without those faces in the rearview!

And I sit in sunny room, a palatial expanse, hum of the dryer and a sudden home, a grocery list and kitchen utensils and a recipe.  Sixteen months and the first meal cooked.  Not microwaved.  Not to-go styrofoam from a restaurant.  Ceramic plates.  Glasses.  Imagine: a refrigerator, a stove, a sink, a table, a child, all in the same room.  No flights of stairs to run up and down to heat up yet another hotdog.  For the first time in sixteen months, I sat in a cushy chair in the early morn, coffee and book in hand.  Wonderment.  Grandeur.

I walk out into that cool of night, crystalline stars blue and white, sparkling, not trite but truly, they sparkle.  How long since I looked at stars?  There, Orion’s belt.  Stars countable in a city sky.  I walk the 30 feet from the Ron Don Apartments solely for those patients discharged from bone marrow transplants, into Ron Don’s House A.  A familiar face and a story.  Kidney failure from a culprit whose name I know so well, drawing its milky substance into the syringe, three times every day, waking her every night at 2am.  “Allistaire, Allistaire.  Wake up sweets.  It’s time to take your med.”  Up she rises in the dark, half-asleep, trusting, mouth open.  And little John, little John.  “But I thought they went home?!” my voice a near quiet wail.  He bled out.  Just blood everywhere.  But, but…his platelets?  No, they were high enough.  His clotting factors then?  No.  No.  His cells just broke open.  He bled out.  Another family swept away east, empty-handed.

I stumble back through the night air, to my spacious abode, to my bald-headed girl.  Bright.  Cheery and spinning.  And I draw up the meds, again and again and she opens her mouth.  Trembling at the huge chunk of magnesium.  Shaking at the sight of that fish oil capsule.  But you must.  You must!  Press forward, rush at that pill before it gets the better of you.  Defy it.  Don’t look at it.  Don’t think about it.  Just do it.  Put it on your tongue and swallow!  Can you not hear the pounding of some monstrous hooves?  The breath hot and rancid on your neck?  The flying of rabid saliva.  Run Allistaire!  Run child, run!  We must keep running, I silently wail.  And the ashes of children, children whose voices I have known, ashes of eyes that once were bright, falling, falling all around us.  Ashes on our cheeks, ashes in our hair.

And upon the wall I’ve hung the art, the endless rainbows of color.  The cheery felt flags and the string of butterflies.  I’ve purchased bins, bright taffy pink bins with lids, little woven bins of lemonade yellow.  The lip glosses go here and the legos there.  Spread out the new Ikea rug across the cold faux-wood linoleum.  Set the picture frames upon the tables and cozy up to lamp light.

We escaped.  Maybe.  But who are we that we should be any different?  Who am I that I should be allowed to keep my child?  I watch the eyes of my friends.  I reach out and know they are impossibly far away.  They dwell on the other side of that gulf.  People say, “So, one-hundred days huh?  And then you get to go home, right?”  You see, I never imagined we would even make it to this day, this twenty-eighth day post transplant.  Allistaire’s done so well, she discharged from the hospital last Wednesday, February 3rd, in near record time.  A mere twenty-two days post transplant and after a short 46-day inpatient stay, Allistaire walked out of that hospital into the light and air of the outside world.  And I felt relief and awed shock.  How?  How did it go so well?  How was it so incredibly easy?

The very next day our out-patient life began with a full day of clinic appointments at SCCA (Seattle Cancer Care Alliance).  I hadn’t prepared my heart, just read the times dictated to me.  Go here, go there, at this time she’ll get her blood drawn, meet with the nutritionist, the social worker, the pharmacist, the nurse, the attending physician.  Yes sir, yes ma’am.  We do as we’re told, we open our mouth and move our feet to their instruction.  I’d forgotten the stares.  The stares of adults with cancer taking in the image of a small girl, bald like themselves.  A sort of horror and wonder in their eyes as they take in the smooth curve of her cranium, little blond hairs sporadic at her crown and nape, tubies peeking out from under her shirt.  I’d forgotten the sight of great swelling cheeks, cheeks that no obesity could fashion, cheeks like grapefruits, the effect of steroids unmistakable; steroids the primary defense against GVHD.  She seems to have made it out alive from transplant, but there it is, staring us in the face, the next beast threatening to devour and the perverse desire for it to come.  Yes, GVHD (Graft Versus Host Disease), you are welcome here, we invite you, come, come devour, come eat alive the ever-present threat of those mutated cells.  And I gag at the thought.  GVHD can kill.  Kill outright or kill by slowly stealing away quality of life.  And yet, not even radiation on par with a nuclear blast, not round after round of ravaging chemo is enough to trust those bastards are gone.

Walking in the doors of that building, going to the 6th floor for the transplant clinic…it all comes sweeping back, a flood of memory, the terror that rose, water to the neck.  Abrasive, the memories admonish, don’t let down your guard, don’t feel at rest, muscles stay tense, eyes alert, edgy.  When is it coming for her?  When will it strike again?  Only 50 days after her first transplant in June 2013, her cancer showed itself again.  Will we ever, ever be rid of it?  Will this crazy life ever end?  And you tell yourself to shut your mouth.  Your friend, whose hand and the cold hand of her daughter you held, tells you she would given anything to be in the fight again, just to have her little girl with her.  So don’t you dare weep for the ravages of your life, for she is with you!  She is here!  But will it ever end?  Oh God, must it end that way to end?  She had her Day +28 bone marrow test yesterday and her chimerism test to determine what percentage of her marrow is her own and what is donor.  How long might we enjoy this reprieve?

Dr. Cooper saw her in the hallway yesterday, and said, “She just looks SO good!”  Words echoed by many, many that have walked long on this journey with her.  Yes.  Her eyes sparkle with glee.  You should have seen the enamored wonder in her eyes as she spun in her new room, her own room in our Ron Don apartment.  “I was squealing getting into the car,” she tells me, “all my dreams are coming true!” she grins.  I cried when I walked in the door of our apartment for the first time, less than an hour after hugging Stevie’s parents, Keshia and Michael, and grandmother, Linda, goodbye, knowing they had one last stop before traveling east on I-90.  They were headed to pick up Stevie’s ashes.  And I was headed into a new apartment and post-transplant life.  Tears that they had a U-Haul trailer full of Stevie’s toys, toys to pack away in a storage unit, and I, toys to pull out of boxes to set up in anticipation of Allistaire’s joy.  Tears that we have this gift we’ve done nothing to deserve.  Tears that this present lull in no way guarantees we have escaped the same outcome.  Tears for a home that is not home.   So weak the prayers, “Oh God.”

Allistaire is doing wonderful so far.  She has clinic days at SCCA each Monday and Thursday, with frequent lab draws in-between due to the ongoing need for transfusions, especially platelets which are the last to recover.  She engrafted on Day +20 with an ANC of 2050.  Her ANC has since dropped due to no longer getting the GCSF (Granulocyte Colony Stimulating Factor) infusions, but today was 630.  Allistaire has not had an ANC that high for nearly a year and a half.  Her medications continue to be adjusted as drug levels are taken and electrolytes change.  She gets 35 doses of meds per day which include the immune suppressants tacrolimus, and mycophenolate mofetil (MMF), hydrocortisone to compensate for the insufficiency of her adrenal glands, acyclovir to protect against certain viruses, voriconazole to protect against fungus, dapsone to protect against pneuocystis, ursodial to protect her liver, fish-oil to reduce her high levels of triglycerides, vitamin D supplements and a multivitamin.  For her heart she takes hydralazine, isosorbide dinitrate, carvedilol, lasix, spirinolactone, magnesium supplements and Entresto.

Her higher ANC betrays the true weakness of her immune system.  Because her transplant wiped out her immune system, it also wiped out the immune effect of the vaccinations she has received, with the exception of chicken pox because that lives in the nerve cells.  It will take an entire year for her immune system to fully reconstitute.  Only then will she be able to get re-vaccinated, for the third time in her life.  For this reason, for one year post transplant she is not allowed to attend school nor any event or go to any location with a high density of folks.  We venture out with caution, at off times, mid-day, mid-week when we must go to the store.  She cannot dig in the dirt, cannot frolic in the grass, must avoid house plants and all sources of fungus.  Her food must be more carefully washed and cooked to avoid food born illnesses such as E. coli, Salmonella and Listeria.

We walk forward in hope, though it is not a bright and refreshing hope.  It is the hope of the hunted.  It is hope that there may still be a way through, though the dangers great.  It is a hope permanently stained with images of those who have fallen, images of tear-stained faces of friends, bodies lining the road behind.  It is a hope that feels a bit crazed and frantic, a panting from hard running.  It is a hope that yearns for a day when this fleeing may cease and a weapon will have been crafted that can be thrust deep into the heart of that beast, killing it forever.  For now, we strain forward, seeking to feel the warmth of sun on our faces, never taking one moment of life and bounty for granted.  My prayers are short.  “Thank you God.”  Thank you for this ice amazingly ever available in this freezer.  Thank you God that every time her platelets drop there are platelets ready to replace the empty space.  Thank you God for an oven to bake cookies in.  Thank you Father for that giddy joy she has as she places the chocolate chips in the pancakes.  Thank you God for the hope that we will see Solveig soon.  Thank you God that Allistaire is almost 6 years old.  Thank you that though we have been chased relentlessly for four years, her life has tripled from what it might have been.  Thank you God for every time I get to hear, “I love you Mommy.”

And I cry out to the Lord on behalf of those who have lost their little beloveds.  Oh, Lord.  Oh Lord.  Have compassion.  May your Spirit go out from you and dwell within those broken, bleeding hearts.  Comfort with the comfort that only You can yield.  And do not turn away from this ravaging, God!  Come quickly!  Bring an end to this brokenness.  Redeem the loss.  Raise the dead.  Bind up the wounds.  Put an end to the curse and bless.  Wipe away the tears.  We are expectant for You!

And Father, though we run as those chased, let us simultaneously find our rest in You, our only home, our very life.  May times of refreshing come to my heart, dependent on You, not on changed circumstances.

My friend lost her baby girl the day before she was to be induced.  She had to push out a child not breathing.  Only months later she learned she had cancer, at just about the same time she found out another child was on her way.  Now there is a bright, smiling baby girl in her life and tomorrow she finds out if her cancer has stayed at bay.  Her longing is that she might be singing when the evening comes, no matter the results.

Yes Lord.  May we sing out, even as tears stream down, let us bow low and worship and fix our eyes on You.

(Got a call yesterday evening with Allistaire’s bone marrow biopsy results…0% detectable leukemia by Flow Cytometry and 100% Donor Chimerisms in both the peripheral blood and marrow – this means only Sten’s/Donor’s cells are detectable and nothing of Allistaire’s old immune system, including her cancer, is detectable at this point.  What an incredible grace of God.  Thank you.  Thank You Lord!)

IMG_2578 IMG_2584 IMG_2585 IMG_2589 IMG_2594 IMG_2595 IMG_2598 IMG_2602 IMG_2604 IMG_2606 IMG_2609 IMG_2615 IMG_2617 IMG_2622 IMG_2626 IMG_2629 IMG_2646 IMG_2631 IMG_2633 IMG_2638 IMG_2653 IMG_2639

 

Transplant Day+8, well now +12

Standard

IMG_2524Were it not for the last 24 hours I would have chosen a different title for this blog post, but the past day has been such an odd contrast to the preceding seven days that I can state only that we are eight days into this thing.

The first seven days of this transplant have been marked with Dr. Bleakley being remarkably smiley and saying on several occasions that Allistaire is doing better than she thought she would.  This in turn has made me smile a lot as well!  When Dr. Cooper stopped by briefly yesterday to check in on us, he was taken aback that when asked how I was doing, I responded, “Ecstatic.”  Because, really, really, it is simply still a startling wonder that transplant has happened.  What happens going forward is simply a matter of having to accept and respond to.  No longer is there the great weight of, “will we make it to transplant, will this stop us?”  Even her heart, though of course we want to continue to vigilantly care for it, no longer is a barrier to moving forward with this radical intervention of therapy.  And as I said, the week has gone amazingly well.

Allistaire’s fever on the evening of her transplant was the first of about six.  Blood cultures are drawn every 24 hours within which there is a fever and all continued to be negative for any evidence of infection.  In addition, despite wrapping up her Flagyl therapy for C-Diff, she actually had increased diarrhea.  The fevers and diarrhea, Dr. Bleakley told me, is evidence of the cytokine response happening within as Sten’s cells entered a foreign environment.  Dr. Bleakley was quite pleased with this degree of cytokine storm as it was evidence of an immune effect happening but not one that raged out of control and seemed to impact her heart.  Though all of this did make for some rough nights for both Sten and Allistaire as there were countless poopy diapers to change.

On Friday morning, January 15th, Allistaire had an echocardiogram and EKG to serve as a baseline going into getting Cyclophosphamide/Cytoxan and the associated hydration used to counteract the common side effect of bladder bleeding.  Her function remained consistent with the previous echo done in mid-December, though her heart was very slightly dilated (2mm).  Dr. Law was pleased with how she had weathered the first storm of this transplant.  Her heart rate had also been quite elevated (150-160s) for several days which could not be accounted for by any measure of her heart function.  He assumed it was related to the oncological realities happening with the fevers and cytokine effect.  Indeed, once the cyclophosphamide wrapped up two days later and the fevers subsided, her heart rate down-trended nicely to 100-120.

Friday and Saturday she received one dose of cyclophosphamide each day in addition to hydration at 1.25 times her maintenance rate.  Additionally, she was required to urinate every two hours with the urine being tested for blood.  Thankfully, other than once when her platelets were very low, she either showed absolutely no blood or only the most trivial amount.  The possibility for an acute cardiac hit was also monitored by tracking her BNP (Brain Natriuretic Peptide), a measure of heart distress, and troponin levels, which are evidence of heart muscle cell death.  Thankfully, so far her troponin level has remained essentially undetectable which means there is no evidence of heart muscle cell death and her BNP has been low.  A repeat echo was conducted on Monday and showed a slight decrease in heart function with an ejection fraction down from 42 to 37 and a slight additional increase in dilation.  However, the cardiologist remained please with how well she had tolerated all of the hydration.  Allistaire showed absolutely no signs of burden from what she went through.  Her lungs have been clear and all clinical assessments have continued to be excellent.

The plan was to move Allistaire upstairs to the cancer unit after one final day in the ICU after the end of hydration.  So yesterday afternoon we moved back up to the cancer unit into the very room we left a week prior; a room with a great view, Forest 7 room 219.  Tuesday had been a day mostly spent waiting to move upstairs and by 4pm she was finally settled in for a nap in her old room.  I headed out of the hospital for a few errands and just before 6pm got a call from the nurse that Allistaire had a raging nose bleed.  I could hear Allistaire hysterical in the background.  She had a horrific nose bleed back in November which was increasing her terror with what she now faced.

While I was on the phone, driving back to the hospital as fast as rainy congested streets allowed, I made sure to ask that platelets had been ordered STAT!  Yes, yes the word came.  When I walked into the room there were countless bloody tissues and the sweet BMT PA, Agne, attempting to help Allistaire with holding her nose.  I took over nose clamping duties while we waited desperately for platelets to come.  An hour passed and I kept being told the platelets were on their way, almost here.  Allistaire was settled for a while with me clamping her nose with shocking grip.  I was actually in awe that my hand muscles could keep up with the demand on them.  For a while Allistaire had calmed and quieted but then with absolute terror in her eyes she shot up and screamed that she needed to throw up.  What came out can only be described as what it might look like to hurl out of your mouth a gutted-animal, so thick and plentiful was the curdled and clotted blood (see very last picture at end of post).  It was horrifying to watch that projecting out of her mouth.  She cried and screamed and I’m sure must have felt like she couldn’t breath with her nose clamped and huge wads of blood filling her throat.

The platelets were still supposedly coming but were never arriving.  I found myself getting madder and madder, sadder and sadder.  To quote the movie, “Home,” I was “sad-mad.”  I hated that my little girl had to endure such horrors; not just the repulsiveness and scariness of this, but the reality that her own body is under constant attack from a disease that destroys the part of her that is supposed to protect and sustain life.  Yet, I was so very thankful that help was on its way despite taking a ridiculously long time.  As I sat there clamping Allistaire’s nose, trying to calm her, trying to press down my own angst, I harkened back to reading about the realities of leukemia prior to the 1950’s, in a time before platelet transfusions.  This is well described by Dr. Emil J. Freireich, who “still can’t forget his first exposure to childhood leukemia, the heart-rending and terrifying fatal cancer his boss instructed him to cure.  Freireich, then a hotshot young researcher whose only knowledge of pediatrics came from medical school, took over the care of kids with the disease, kids with all manner of lumps, bruises, headaches, infections, fevers and, most of all, bleeding that Freireich says made the hospital unit ‘look like a butcher shop.’ Ninety percent of them were dead in a week.  ‘You cannot imagine how horrible it was,’ says Freireich, 88, nearing his 50th anniversary at M.D. Anderson Cancer Center. ‘These were 3-, 4-, 5-year-old kids bleeding to death, bleeding out of their ears, eyes, nose, skin and bowels, bleeding internally, vomiting blood. It was a parent’s greatest horror.” (Legendary Oncologist Returns to The Limelight)

Finally, two hours later the platelets came; a simple little bag containing a minimum of 150,000,000,000 platelets.  Sometime ago I learned that platelets are not actually true cells but are produced within a large cell called a Megakaryocyte, each of which can produce two to five thousand platelets.  And until Dr. Freireich discovered that lack of platelets were what caused the horrific hemorrhaging and then developed a method to transfuse platelets, children with leukemia never even had a chance to really have their cancer treated, they just bled out and died rapidly.  In reading up more on Freireich, I learned that he was also the first to have the idea to transfuse granulocytes and to develop a means for accomplishing this.  He co-invented the continuous-flow blood-cell separator, was part of the research group that first began to use antibiotics empirically to control infection and determined that you start to bleed when your platelets reach 10,000 – this is the same threshold used today over fifty years later.  Perhaps most significantly, Dr. Freireich and his closest collaborator, Dr. Frei (both had the first name Emil if you can imagine that?!), were the first to use aggressive doses and combination doses of chemotherapy to attempt to cure Acute Lymphoblastic Leukemia.  They were met with extreme opposition but persevered and succeeded!

If I had my dream come true, I would sit down before Dr. Emil J. Freireich and attempt with all my heart to say thank you.  Over and over my child’s life has been sustained because of his direct efforts and accomplishments!  Thank you Dr. Freireich, before Allistaire was born, even before I was born, you labored endlessly in the face of incredibly opposition, belittling, and in terrible conditions because you were determined to find a way through for these kids.  You don’t know her, but my little girl, Allistaire Kieron Anderson is alive today because of you!  You!  Her life is part of the fruit of your labor and once again I find myself deeply and joyfully indebted to total strangers.  There is a yearning in me to thank this man, to look into his eyes, or perhaps to even attempt a great hug to say thank you a hundred-million times over.  Allistaire might as well have been pulled from a burning house by a stranger, but not just once, over and over and over.  I often find myself dumbfounded, gaping in the mouth of all we have to be thankful for, the magnitude of our abundance staggers!

And it continues!  We had a few bumpy days but made it through.  After the raging bloody nose on Tuesday night, Allistaire finally got all settled in bed for the night.  I stood at the foot of the bed while the nurse drew some labs and I happened to have the monitor in sight when all of a sudden, Allistaire’s heart rate jumped from about 100-110 to 208 with a ragged tight swath of crazed up and down peaks of her heart rate.  In a second it was over and I asked out loud, “what was that?  I have never seen that!”  I asked that Allistaire’s electrolytes be checked, thinking that with all that blood loss, they might be wacky and this can throw off the rhythm of your heart.  The hospitalist ordered a STAT EKG and electrolytes were checked.  Everything seemed normal with the exception of a lower potassium, but nothing crazy.  So we went to bed finally around midnight.  After waking repeatedly every hour for diapers and the nurse coming in, the doctor woke me about 4:45am to say there were going to call a RRT (Rapid Response Team).  This is where a risk nurse comes and evaluates your child and determines whether or not more intense intervention is necessary and the child is often transferred to the ICU.  What prompted this was another episode of what the monitor called, “VTac,” which refers to Ventricular Tachycardia.  Because VTac can be very dangerous, Allistaire was transferred to the ICU where they could better monitor, and actually record for later review, her heart rhythm.  So only about twelve hours after moving to the cancer unit, down to the ICU she went, into the same exact room, Forest 6 room 321.  Good grief.

The next morning she had an echocardiogram to determine if there was any decrease in her heart function.  A more dilated heart is more likely to have arrhythmias.  Because she had thrown up a total of 450 ml of blood and the cardiologists want to keep her hematocrit above 27, red blood was ordered and got underway.  And despite getting a transfusion of platelets the night before, because it was decided to raise her transfusion threshold from 10 to 50 to really stop the bleeding that might not only be in her nose, platelets were also ordered.  So the red blood was paused while the platelets went in but the red blood expired (it only last 4 hours once the bag is spiked) before there was a chance to get in anymore than 60ml.  Her hematocrit was checked again and it was down to 19 (standard transfusion threshold is 20 so this was exceptionally low for her).  Blood was ordered once again.  Throughout the day Allistaire was extremely tired and not at all interactive.  She was incredibly worn out from the nose bleed trauma, a hectic night with countless interruptions, and a very low hematocrit.  Our nurse had expressed several times how she just didn’t seem like her normal self.

We were hoping to get her blood started and down for a nap when the nurse discovered a tiny pin-prick of a hole in her red lumen.  IV team was immediately called to repair the line and to also place an IV so she could get blood and meds that obviously couldn’t wait the 24 hours the line is out of commission while the glue in the repair sets up.  Despite much screaming on Allistaire’s part, another nurse was able to place an IV in her hand and off she went to sleep, the blood flowing in.  About two hours later, our nurse called me to tell me, “your girl is back and wants to talk to you.”  Allistaire jumped on the phone and immediately you could hear the difference.  Blood.  Blood!  She was alive!  The little worn out girl who’d lost her spunk needed blood!  Hey, have you donated blood recently?  Ever?  Perhaps this will sound pushy and rude, but really, if you say you love Allistaire, if you say you want to know what you can do to help, anything, well then, give blood!  Allistaire would never, ever have a bit of chance to fight this cancer if it were not for the countless blood transfusions she’s received because real people were willing go give of their time and endure a wee bit of discomfort to give something from within themselves that can literally save people’s lives.  Isn’t that wild?  Can you cure cancer?  Can I?  Probably not, but she has no chance to try to see if this treatment works if she doesn’t have blood!  Enough already?  Maybe.  And please, those of you that honestly can’t give blood…you lived in the U.K. for some period of time or were in a malaria laden country or whatever disqualifies you from giving, fine.  No worries.  I’m talking to all of you out there who can give blood and either are afraid or haven’t managed to find the time.  Please.  Please, for Allistaire, for so many whose lives could not be sustained otherwise, make a point to do it now!

Late in the afternoon the cardiologist finally came by to report that Allistaire’s heart function was totally stable, identical to the last echo.  He talked with me at length about why he believed that Allistaire was probably just fine and suspected that what had actually occurred could have been SVTac, or Supraventricular Tachycardia, which is also an irregular heart rhythm that begins much higher up in the heart and is far more benign than VTac.  She had no more episodes of irregular heart rhythms and he felt that by the next morning she should be able to safely go back to the Cancer Unit.  I was so incredibly relieved.  Just to ensure one more measure of caution, it was decided Allistaire would wear a Holter Monitor for 48 hours that can, in a much more detailed way, record her heart rhythm.

Once again we made the transition from the ICU to the Cancer Unit, back into our fabulous room 219 which they had held for us.  With the concern for Allistaire’s heart fading a bit, the issue of her line came to the forefront.  Allistaire was complaining a lot about her hand hurting where her IV was placed and when she kept screaming when the nurse tried to flush the line, it was determined that it had to be removed and another placed.  In the mean time, the nurse attempted to flush the newly repaired red lumen on her Hickman Catheter, but to no avail.  She could hardly get anything to flush through and she certainly could not get blood to draw back.  So she put a dose of tPA (Tissue Plasminogen Activator) in the line and planned to wait an hour before trying again.  The IV team came and after two failed attempts to get in an IV, they left for a while.  The nurse then tried to flush and draw back blood again from the line but it still wasn’t working.  At this point Allistaire is really worked up because she knows that if her line doesn’t work then she’ll have to get more IVs.  And indeed, IV team came back, this time successfully placing an IV in the hand which is the same hand she sucks her thumb.  She was horribly sad.

Then out of the blue I am told the ultrasound tech is coming to look at her line.  At this point I’m totally confused because just the day before they did an X-ray to look at the positioning of her line with the concern that if the tip of the Hickman catheter is too far down into the ventricle of the heart, it can cause agitation and in turn stimulate an arrhythmia.  Turns out the purpose of the ultrasound was to look at her vasculature in her neck and chest to determine where a new line could be placed.  Before I knew it I was talking to the surgeons, signing consent and talking with the anesthesiologist about surgery for a new line to be placed the next day on Friday.  All the while I was thinking, “HOLD UP!!  Let’s just slow this thing down a bit and see if we can’t get this line working.”  The BMT PA was concerned that because the line was so old, that the repair wouldn’t work and we needed to get moving on planning for a new line placement.  Understanding her point but being none too pleased about the idea of Allistaire having surgery with no white blood cells to fight infection or about more cuts into her already scarred up body, I asked that we please try more tPA.  This time it was left for two hours and it worked beautifully!  Allistaire was beside herself with excitement that the IV was coming out.  And her line has continued to work great and surgery was scratched off the week’s T0-Do’s.

Despite some rocky, odd days, Allistaire is doing phenomenally well!  She is closer and closer to a true baldy top as most of her hair has fallen away, leaving only her signature blonde fringe at the hairline around her face and a scattering of hairs on the rest of her head that sort of makes her have a bit of a glow.  She’s happy and hilarious.  Her mouth sores have mostly healed and she’s able to take all of her meds by mouth with the exception of those that can only be given IV.  She’s drinking her required fluids each day and eating enough calories to not need TPN (IV nutrition).  Her labs and vitals have been great, lungs are clear and her heart seems to be doing well.  Her really only struggles are keeping her platelets high enough to avoid nose bleeds and the mucositis in her bottom.  Because radiation and chemotherapy are most effective at killing rapidly dividing cells, you lose your hair and the cells that line your digestive tract all the way from your mouth and out the other end, are damaged and die.  So for Allistaire, it hurts really bad to urinate and poop.  A urine sample tested negative for a UTI and for BK virus (Bladder Kidney Virus) which is what leads the doctors to believe this is just mucositis that will take time to improve.  All in all she is just doing amazing!  She tested negative for C-Diff today which means she is now only in Contact Isolation, not Contact-Enteric Isolation, which allows her at long last to leave her room and go for a walk around the Unit.  So for the first time in three weeks, Allistaire had the freedom to walk the halls of the Unit.  When the front desk Unit Coordinator greeted her by name, Allistaire raised her hand in questioning and said, “How did I get to be so famous?”  Oh my.

We have twelve days of transplant behind us.  Dr. Bleakley estimated that Allistaire would “engraft,” around Day+21.  Engraftment is when the stem cells, infused into the peripheral blood, have migrated to the bone marrow and begun to reproduce.  An ANC (Absolute Neutrophil Count) of 500 two days in a row is considered official engraftment.  This is a bit longer of a time frame than you would typically expect in a Peripheral Stem Cell Transplant, but because she received Cyclophosphamide on Days+3 & 4, the timing gets elongated.  But once her cells start to come in, she will finally have white blood cells that begin to repair the damage done by the chemo and radiation.  Of course this is also when you can begin to see signs of GVHD (Graft Versus Host Disease).  Her first bone marrow test will be on Day+28.

I am pretty much in awe of how things have gone thus far.  I am so very thankful for each day we are able to walk forward.  But my heart remains heavy, not just for Allistaire, but for other moms dear to me.  At this time I think of my friend Julie Guillot, whose son Zach, was undergoing his third transplant for AML at this time of the year two years ago.  His liver ended up suffering from VOD/SOS and he died in the ICU of internal bleeding on February 7, 2014.  She and Zach walk these halls in my heart with me.  I think of sweet Stevie up in a darkened room on the 8th floor.  Fighting a raging bacterial infection and her marrow and blood full of leukemia with her newborn baby sister in the bassinet next to her, while her mom Keisha attends to her every need and her dad is back in Montana working to provide for his family.  Keisha and Stevie might as well be Allistaire and I.  What happens for them feels deeply personal to us.  We hold them tight.  I think of bright Ava who lives in Chicago, and who like Lilly did, fights bi-phenotypic leukemia which means her leukemia has characteristics of both ALL and AML.  A year after her transplant, trace amounts of her disease has returned in her skin and marrow.  Her parents strive to know what the Lord would have them do walking forward.  I think of dear Heather, who everyday must live without hearing Lilly’s voice.

Yes, Dr. Emil J. Freireich contributed enormously to the fight against leukemia and is credited with a lot of why you’ll hear leukemia has a 90% cure rate.  But not all leukemias are the same, and AML is a beast far, far different than ALL.  Around half of children with AML will die.  There is still a long, long way to go to get to such an amazing prognosis for children with AML.  Won’t it be amazing one day when we reflect on these early years of the 21st century and talk about how it all changed, a world where most kids with AML died and then tenacious cancer researchers refused to give up, they pressed on despite all the obstacles.  Won’t it be absolutely beautiful when treatment for AML doesn’t break hearts, literal and figurative?!

“For their parents, it was agony.  In order to have a chance at life – they were told – their child had to be brought savagely and repeatedly to the brink of death.”  Malcolm Gladwell, “David & Goliath”

So true.  We walk forward into dark terrors because we have no choice, no alternative.  I hope desperately that in the next fifty years, cancer treatment will look nothing like it does today and it won’t have such holistic ravaging effects.  Lord hear our prayer!IMG_2402IMG_2405IMG_2416IMG_2431IMG_2432IMG_2442IMG_2444IMG_2445IMG_2447IMG_2455IMG_2459IMG_2477IMG_2486IMG_2497IMG_2500IMG_2505IMG_2510IMG_2512IMG_2525IMG_2527IMG_2528IMG_2507IMG_2508IMG_2509

Transplant, Haplo-Style

Standard

FullSizeRender-18FullSizeRender-34FullSizeRender-35FullSizeRender-9FullSizeRender-16FullSizeRender-15FullSizeRender-10FullSizeRender-11FullSizeRender-12FullSizeRender-11FullSizeRender-7You look out upon a field studded with rocks, rocks small that huddle together in the hand like eggs in a nest, fist-sized rocks, rocks you think if you gave them all your strength you could heave up out of that earth, hold to your chest, hugging them round with your arms.  And here and there, a few scattered boulders.  Boulders, monoliths, enormities that stand silhouetted against the sky.

How can I ever gather them all?  The task overwhelms.  Scattered all about they don’t look like much.  Yet to convey the enormity of the day, one massive boulder would never suffice.  No, all those rocks would be necessary.  And not just a great pile, no, no, an intricately designed wall.  Or better yet, something yet more complex: a dome formed with each rock set carefully in place.  Rock against rock.  Force pressing up against force.  Rocks tucked tight so that the tension could somehow hold up the curvature.

To come to this day, this day seemingly like hundreds of others, has required a hundred thousand minute steps.  How many times has a nurse “entered” her line?  Fifteen seconds of scrub time.  Fifteen seconds of dry time.  How many sets of vitals?  How many CBCs (Complete Blood Count)?  How many echos and bone marrow biopsies?  How many times have her cells gone hurtling past a laser, striking that electron off to release a burst of energy at a precise wavelength to reveal its identity?  How many transfusions of red blood and platelets?  How many emails flying back and forth between doctors, careful to consider all facets of her case, what will be best? What meds?  What protocols?  How many great hurdles overcome?  How many slim possibilities made real?

When at last the time came, when at last word came that, “the cells are here,” and the room began to flood with folk, tears came quick.  Tears of being just plain overwhelmedly grateful.  The weight of the bounty, the absolute wonder of all that has taken place to bring us to this day.  This day.  This day of transplant.  This day of hope, of an open door, of another gift, another opportunity to pull a weapon from the scabbard and thrust it into the heart of those cancer cells.  And the faces…faces dear to us, faces with whom the most difficult possible conversations have taken place.  Faces beaming with joy for having walked long segments of this road with us.  And though the faces of many were not present, I saw them still.  In my mind there I saw Dr. Pollard, Dr. Gardner, Dr. Tarlock, Dr. Cooper, Dr. Berstein, Dr. Law, Dr. Kemna, Dr. Hong, Dr. Albers, the faces of countless nurses, of pathologists, and lab techs, Mohammed and Bonnie.  The list could go on and on.  If this was a Golden Globe I’d be kicked off the stage.

And there was something so poignant about the setting.  The plan had been all along to put Allistaire in the ICU for the most crucial, dangerous portions of transplant.  The ICU has many more means of monitoring her heart and an array of cardiac meds that cannot be given on the Cancer Unit.  Allistaire cannot be handled by standard protocols alone.  Everything that happens with intense immune responses result in the potential for great fluid shifts which in turn can radically impact the heart.  The first event of concern was simply receiving her cells.  As with all blood products, there is always the risk of an allergic type reaction, but even more significant is the possibility of a “cytokine storm,” due to the large mis-match between Sten’s stem cells and her own body.  It is like two great waves crashing into one another.  This clash of contrasts can result in a cascade of immune system signally and response that can be severe enough to be fatal.

When I asked the nurse what room we would be in the ICU, my mouth dropped at her response.  Forest PICU 6 room 321.  The very room we spent 70 of the 80 days Allistaire was in the PICU last January through April.  So as the morning turned to afternoon and the cells finally began to flow into her line, and the “Happy Transplant Day,” song was ended, and someone yelled, “Speech!” – I simply could not resist.  I could not resist proclaiming the wonder that we had come full circle, that in the span of one entire year, we had returned to this very room to at long last enter this gauntlet of transplant.  As I stood there before that little throng of medical staff and family, the bare white unadorned walls of this agonizingly familiar ICU room constraining, my heart was bursting, my few words fumbling to offer up a naming of gift and thanks.  Thanks for each person present and not present who has so faithfully, and graciously and compassionately done their part.  We have each put our head into the wind and pressed forward though relentlessly buffeted, somehow forward motion has been attained and as we look back, wow, wow, who can believe we have covered such a great distance?!

In the center of the room, a bright flash of spirit.  Allistaire Kieron Anderson, a spirit whose light is like sparkling pink lemonade, giddy, curls upon curls, curls of blonde hair tinged in pink and curves of cheek and chin with light glinting out of her blue eyes.  Lord, you make a crazy claim, one hard to fathom, sometimes hard to swallow, yet simultaneously gorgeous and wondrous:  You know all of our days before one of them comes to be (Psalm 139:16).  I have sought your face, I have yearned to walk this life held in You and one year ago, you said, “Come, follow Me, take my hand and let us walk this way, down this road leading into darkness,” as alarms blared on pumps and CT scans and echocardiograms declared disaster. I don’t know the road ahead, but as I turn, craning my neck back to look down that dark road behind me, hand gripped in Yours, I am simply in awe, in awe of the dangers and sorrows, of tears that threatened to drown and always Your hand, never letting go, and always Your Word, Your quiet voice entreating me to fix my eyes on You, on You and rest child, rest, rest in Me though all around you, you feel the ground giving way and the night presses in thick and you can’t seem to catch your breath, and the teeth flash and your whole being groans.

And startlingly, here we are, we have circled back around.  The obvious question is, “Why?  Why Lord?  What was the point of all that?  I mean really, really, did we really have to take what feels like a year-long detour through treacherous territory only to come back to where we started yet more bloodied and bruised, wounds deep?”  So much lost.  So much time.  So much separation.  So much damage.  So very many tears.  The lacerations and scars are easy to see yet don’t begin to reveal the depth of ravaging.  What is harder still to see is the other-worldly beauty, the treasure often imperceptible.  Seeds in dirt don’t look like much.  Seeds sailing on winds…The Lord’s aim has never been transplant.  He aims for my heart, for all hearts and sometimes in great peril and pressing darkness we are more able to see aright, to incline our ear to His voice, to have His Word made full and pulsing with life, our stiff necks bend low and we come to worship the God of creation as never before.  Getting to transplant has never been hard for the Lord.  To say that it has been trivial in His sight sounds callous only when I fail to set it against the enormity of His heart for me, for me a child of Adam, a child of God.  But I have no doubt God smiled broad and His face beamed as we gathered in that small room and were witness to the marvel of the human body, to the tenacious brokenness of creation, to the wonders of medicine and human endeavor, and to hope, hope for a way through.

I don’t know the road ahead and there is the quiver of trepidation, knowing there are still many dangers.  But on this gray January day with rain intent on saturating, my heart feels heavy and full, full with the satiation of joy and full of yearning to keep leaning in, inclining my face to the face of my God.  I look at this little girl and marvel that I should be so blessed to call her daughter and to walk this road with her, to hold her sweet little hand along the way, and to incline my ear to the pleasure of her small sweet voice, a voice proclaiming dreams of a future and joy for the present, delight in simply putting color down on paper, color alongside color alongside color.

Allistaire has made it through five fractions of focal radiation to the chloromas in her sinuses, eight fractions of TBI (Total Body Irradiation), three doses of the chemotherapy Fludarabine, all in preparation, a “conditioning,” for transplant.  The only direct immediate result has been fatigue and a C-Diff (Clostridium Difficule) infection due to the effects of radiation on her gut for which she is now on Flagel.  On Monday, on her day of rest, Sten’s birthday, Sten received his fifth and final shot of GCSF (Granulocyte Colony Stimulating Factor).  Then, in the early afternoon over the course of several hours, his blood was pulled out, and through the action of centrifugal force, the lighter weight white blood cells including CD34 stem cells, were separated out and the remaining blood returned, a process known as apherisis.  In total, the goal of 5-6 million CD34 cells/kg was achieved in a mere 187ml of Sten’s blood.  Sten’s blood was then processed, having both the red blood cells and platelets removed because of the antibodies Allistaire has formed against them.  When that bag of orangish red blood arrived in Allistaire’s room on Transplant Day, it contained nearly 120 million CD34 stem cells within 148 ml.

Due to extreme weariness at countless plans dashed, I felt no need to explain this transplant of Allistaire’s until it actually came to fruition.  So at last it is clearly time to explain what we’re doing here because truly there are so many different types of bone marrow transplants, each specially designed and chosen to fit with the uniqueness of the patient and their disease.  In order to make any sense of what is happening in Allistaire’s transplant, a brief overview of bone marrow transplants seems necessary.  When transplants were first developed by Dr. Donnall Thomas of Fred Hutchinson Cancer Research Center in the 1960’s and 70’s, the goal was to have the ability to use extreme doses of chemotherapy and radiation to destroy a leukemia patient’s bone marrow, the source of their cancer, and then “rescue” them by giving an infusion of another person’s bone marrow.  Without this “rescue,” the obliterated marrow could never recover and the patient would die.  Only later was it discovered that a key component of a bone marrow transplant’s potential to cure comes from the immunotherapy effect of Graft Versus Leukemia (GVL).  More about that in a bit.

All bone marrow transplants  begin with “conditioning,” which primarily attempts to eradicate any remaining cancer cells and to make way for the incoming stem cells.  Patients have the highest chance of a “successful” transplant when they go into transplant in remission which is generally defined as little to no detectable disease.  In Leukemia this means 5% or less disease in the marrow and ideally no extramedullary disease (cancer cells which form tumors outside of the marrow).  Each transplant protocol has specific requirements regarding disease status which determines whether or not a patient will be approved to move forward with a transplant.  Additionally, there are numerous conditions of health, especially regarding the major organs (heart, liver, kidneys, etc).  Determining which specific transplant regimen is best for the patient requires a great deal of data gathering and consideration.  All have variable elements of benefit and risk.

The two key defining components of a bone marrow transplant are the type of conditioning and the stem cell source.  There are a number of different types and doses of chemotherapy which may be used in conditioning.  Additionally, a patient may or may not also receive radiation as part of conditioning.  Sometimes the radiation is focused only on certain areas of the body where there have been or are tumors, or only the lymph nodes may be targeted.  In Allistaire’s case, she had both focal radiation and TBI (Total Body Irradiation) which sends radiation throughout the entire body.  Depending on the patient’s health, they may or may not be able to endure full intensity conditioning.  For older transplant patients who may not be in optimal health, “mini transplants,” were developed by Dr. Rainer Storb, also of Fred Hutch Cancer Research.  In patients like Allistaire who have one or more major organ systems that have been compromised, intensity of conditioning is an enormous consideration.  While Dr. Bleakley was very hesitant to give Allistaire a full-intensity conditioning transplant given the status of her heart, the extreme aggressiveness of her disease necessitated this in order to give her any chance of a cure.

The second component that distinguishes a transplant, is the stem cell source used for “rescue” after the marrow has been decimated. This might be may very favorite part of transplant.  Rescue.  A word conjuring up vivid, dramatic images, harrowing situations, bravery, sacrifice, love.  To read specifically about about the beauty of “rescue,” as I wrote about in Allistaire’s first transplant click HERE.  Originally, all transplants used whole marrow as the stem cell source which meant all donors had bone marrow removed directly from their bones.  In time, a method was developed for harvesting stem cells from the peripheral blood with the aid of GCSF (Granulocyte Colony Stimulating Factor).  GCSF promotes the production of stem cells in the marrow and their mobilization into the peripheral blood where they are collected by apherisis.  This is the means by which Sten donated his stem cells.  Lastly, the most recently developed stem cell source is that of cord blood.  Cord blood is blood that is extracted from the umbilical cord of a newborn baby.  Mothers can opt to donate their child’s cord blood which is then registered with the National Marrow Registry and banked, awaiting a person in need of a transplant.  It should be noted that some cancer patients have their own stem cells harvested and then reinfused after conditioning.  This type of transplant is known as an Autologous transplant.  However, whenever a particular blood cell line itself is the source of a patient’s cancer, as in the case of leukemia, they cannot be “rescued,” with their own stem cells as these are the source of their cancer.  In an Allogeneic transplant, the patient receives another person’s stem cells.

Many clinical trials have been conducted exploring the risks and benefits of diverse combinations of conditioning regimens and stem cell sources.  However, a major consideration in determining what type of stem cell source to use in a patient’s transplant is simply availability.  To receive someone else’s bone marrow fundamentally means you are receiving another person’s immune system.  Our immune system is able to accomplish the extraordinary defense of our bodies in large part because of its ability to identify “self” and “other.”  This is actually why cancer is so hard to eradicate.  In essence, the immune system of a person with cancer has failed to identify their cancer cells as “other.”  This is because cancer cells develop from normal healthy cells.  The goal of virtually all cancer treatment is to discern and target the subtle differences between healthy cells and cancer cells.  Typically a prospective transplant patient is “matched” to the greatest degree possible with the incoming stem cells so that the incoming cells look as close to “self” as possible.  This is done through HLA typing.  On human’s chromosome 6, there is a grouping of genes that encode for Human Leukocyte Antigens (HLA) which are then presented on the cell surface of all cells in a person’s body.  It is like a bar code (in the form of cell surface proteins) used as a unique identifier for that person.  These HLA proteins are what distinguish one individual person from another and are what allow a person’s immune system to identify “self” from “other.”  The immune system aims to identify and destroy anything “other.”  For this reason, it is essential that there be a significant degree of HLA matching between the patient and the incoming stem cells.  Otherwise, the patient’s own immune system would heartily attack and destroy the incoming stem cells.  When this happens it is known as “graft failure.”

Another potentially severe complication of a HLA mismatch between patient and donor is known as GVHD (Graft Versus Host Disease).  In this situation, the incoming donor cells may identify the patient’s body as “other” and set about attacking the patient’s tissues, most commonly the skin, gut and liver.  GVHD can even be fatal.  The ways to prevent or reduce GVHD have typically been to select the highest degree of HLA matching and/or give the patient immune suppressants which suppress the immune fighting T-cells within the graft/donor cells.  A major down side of immune suppressants is that they also suppress the incoming immune system’s ability to fight infection which can often lead to life-threatening infections.  As research into GVHD progresses, scientists are learning more about what subsets of T-cells are responsible for the majority of GVHD.  Dr. Bleakley has been conducting a clinical trial in which the “naive T-cells” are depleted or removed from the donor cells prior to infusion into the transplant patient. This has succeeded in substantially reducing the incidence of chronic GVHD.  Click HERE to read more about this fascinating research yielding substantially better results.

The highest degree of HLA matching is a 10 out of 10 match, which means the patient’s cells share the same genetic code as the donor cells at the ten major points on Chromosome 6.  In order to accomplish this matching, patient and donor most often share very similar ethnicity.  It is more difficult to find a good match for those patients who are ethnically diverse, whose ethnicity is rarer or derives from parts of the world in which there is very low Bone Marrow Registry participation.  For example, one of our friend’s was from the indigenous tribes of Guatemala.  Her specific ethnicity is simply rare in the world.  Another friend with sickle-cell was Ugandan, a part of the world with very little registry participation.  Almost amusingly, in Allistaire’s case she may be “too white,” in that she has never had a single match within the United States.  Her matched donors have always been found through the German registry.  She was unable to participate in Dr. Bleakley’s naive t-cell depleted protocol because it requires a U.S. donor.  For this reason, patients will have better transplant options when more people join the Bone Marrow Registry, thus increasing the likelihood that the patient can find a match.  For patients who have no sufficient bone marrow matches, cord blood can be a good option because it must be matched at fewer points (max of 6 out of 6).  Again, this is why donating your newborn’s cord can literally save a life!

As noted, the two major distinguishing components of a stem cell transplant are the type of conditioning and the type of stem cell source.  There is no one right transplant as each patient comes into needing transplant in varying degrees of health, disease status and access to stem cell source.  Allistaire went into her first stem cell transplant in June 2013 with nearly 70% disease in her marrow and 9 chloromas/tumors.  Otherwise her body was “healthy.”  Nevertheless, because of the enormity of her disease, she was only able to receive a transplant because of a specific transplant clinical trial through Fred Hutch that did not require remission.  She would have been dead long ago had it not been for that clinical trial.  When Allistaire relapsed again in October 2014 and needed a second transplant, we were aiming to use the “naive T-cell depleted transplant,” which did require remission.  Fortunately remission was attained but Allistaire had no U.S. matches and Dr. Bleakley set about trying to gain permission from the FDA and the German registry to allow Allistaire to use the available matched German donor from outside the U.S.

However, last January the cumulative effect of her years of chemotherapy and the severe typhlitus infection put her into heart failure.  She no longer qualified for transplant because of the extremely poor function of her heart which nearly resulted in her death.  Even once she regained some function, for a very long time she would have only qualified for low-conditioning transplants.  However, no low-conditioning transplant could sufficiently wipe out her extremely aggressive disease.  So for the past 10-11 months the goal has been to keep her cancer under control while giving her heart the time to possibly regain enough strength to qualify for a full-intensity conditioning transplant.  This has been extremely difficult as the oncologists have had limited treatment options.  Many types of chemotherapy themselves can be hard on the heart and/or greatly assault the marrow, effectively suppressing the immune system which then allows for the possibility of life-threatening infections.  Not only can the infection itself kill you, but the body’s attempt to fight the infection often causes major fluid shifts, changes in heart rates and blood pressures, all of which can put major strain on the heart.  Even seemingly minor situations like the two instances of an ileus resulted in all her medications, fluids and sustenance being given IV which puts a great burden on the heart.  It is a tough situation all around.  This was the reason for trying the WT1 modified T-cells and the decision to try Mylotarg (available only on a compassionate-use basis through Fred Hutch).  And while the Mylotarg was impressively effective against Allistaire’s cancer, one problem has been the incidence of cancer cells mutating in resistance to it and the risk of causing SOS (severe liver complication) in the context of transplant (which is why it was pulled by the FDA in 2010).

Once Allistaire’s heart began gaining strength as evidenced by ejection fractions (as determined by echocardiogram) in the high 30s and low 40s, the discussion began in earnest as to whether or not it might finally be time to give one more great thrust toward transplant.  Countless conversations between the Oncology, Bone Marrow Transplant and Cardiology doctors debated risks and benefits which were strongly tied to both keeping her disease under control long enough to get to transplant and what transplant regimen could give Allistaire the best chance at a cure and not kill her in the process.  When Dr. Bleakley first suggested the real possibility of a Haplo transplant, my gut response was to spit that idea right back out.  A Haplo-identical transplant is one in which the patient is half matched (5 out of 10) with a parent or sibling.

Because of this extreme mismatch, Haplo transplants have historically been associated with many poor outcomes including graft failure, high incidence of severe GVHD, high rates of infection and relapse.  Each awful complication results from attempts to respond and mitigate one of these other complications.  For example, because the HLA is only half matched between patient and donor, the patient’s immune system can attack and wipe out the graft/donor immune system.  Graft failure can be mitigated by increasing the intensity of conditioning to suppress the patient’s own immune system.  However, there is still the likelihood of severe and/or chronic GVHD where the donor immune system attacks the patient.  In order to combat this, the patient is given immune suppressants to tamp down the immune response in the donor cells.  This in turn results in severely lessened ability to fight infection and may reduce the Graft Versus Leukemia effect which is the advantageous and desirable element of the mismatch between “self” and “other.”  Remember that because cancer cells derive from healthy cells, they carry the HLA typing of the patient so when donor cells come into the patient’s body, they are more able to recognize the cancer cells as “other” and destroy them. Dr. Bleakley provided me with this paper, (Modern Approaches to HLA-haploidentical blood or marrow transplantation), which gives a historical overview of Haplo transplants.

Dr. Bleakley went on to describe a more recent approach to Haplo transplants which has yielded results on par with that of standard unrelated-matched donor transplants.  The most unique aspect of this transplant is that the extreme mismatch between patient and donor (half-matched parent or sibling) which would naturally produce immense GVHD, is greatly mitigated by giving a strong dose of the chemotherapy, cyclophosphamide (also known as Cytoxan), on days 3 and 4 after the infusion of the donor cells (the actual day of transplant).  This also occurs in the absence of any immune suppressants which are traditionally started at Day-1 (the day before transplant which is known as Day 0).  What this means is that when the donor cells go into the patient’s body, there is an uproar of immune systems in which the donor immune system begins to respond to the presence of “other” by rapidly dividing its Tcells and beginning the process of fight or GVHD.  There is nothing to lessen this response of the incoming donor cells because there are no immune suppressants present.  This is where the possibility of a cytokine storm comes in and where severe GVHD could take off if there was no intervening.  The possible cytokine storm must simply be managed as best as possible but the revving up of the donor Tcells is stopped in its tracks by these two large doses of cyclophosphamide on Day+3 and +4.  The cyclophosphamide targets rapidly dividing cells including the Tcells, which left unchecked, would produce immense GVHD.  The way that the whole graft/donor cells are not altogether wiped out by this chemo is that, according to a recent discovery, stem cells have proteins on their cell surfaces which make them immune to this particular chemo.  Also left, are a subset of Tcells which were not highly activated and can still go on to fight infection and provide GVL (Graft Versus Leukemia).  There are various versions of this “post-transplant Cy.”  Allistaire’s includes TBI (Total Body Irradiation) in the conditioning portion of the transplant which is essential given the aggressiveness of her AML and the ongoing presence of extramedullary disease.  Other “post-transplant Cy,” transplants may have reduced intensity conditioning.  Dr. Bleakley followed a transplant regimen based on the research described in this article (Total Body Irradiation-Based Myeloblative Haploidentical Stem Cell Transplantation in Patients Without Matched Sibling Donors), published in July 2015.

So at long last we come to this week of transplant.  And for those of you with eyes glazed over or simply head asleep on the keyboard, part of my motivation in going to such lengths to explain this transplant is not only for my own documentation, but also for folks out there in situations like ours who may need detailed information.  Given the condition of Allistaire’s heart and the aggressiveness of her disease, we therefore, chose a transplant with full-intensity conditioning and most importantly, full dose TBI which you can only have once in a lifetime.  The reason for choosing Sten as Allistaire’s donor is for three main reasons.  First off, Allistaire’s chance of both surviving transplant and having it actually cure her is extremely low and so ethically, the doctors do not feel right about asking an unrelated donor to undergo risk and burden to be her donor.  Secondly, given the highly fluctuating nature of Allistaire’s health and disease, the projected date of transplant could easily change which might mean we lose our donor who has constrained availability and requires more pre-planning because they would be donating on the other side of the earth (remember no U.S. donor matches).  Sten, as Allistaire’s father, is more than willing to take on risk and burden and is a highly committed and extremely flexible donor.  By the way, both he and I were options but it was concluded he was the better choice.  Lastly, the statistics for acute and chronic GVHD, NRM (non-relapse mortality), relapse, DFS (2 year Disease Free Survival) and OS (2 year Overall Survival), were on parr with the statistics for standard unrelated-matched donor transplants.  This means that we have the opportunity to give Allistaire as good of a chance at survival and a cure with her dad as a half HLA matched (haplo) donor as she would with a fully matched 10 out of 10 HLA matched unrelated donor with the added benefit that comes with having your awesome dad who is willing to literally lay down his life for you.

Thus far, Allistaire has received her infusion of Sten’s stem cells, essentially getting her transplant on Tuesday, January 12th.  She had no allergic reaction to the cells.  However, later in the evening she had a fever with higher heart rates.  Whenever an immune suppressed patient (in her case because of conditioning, not immune suppressing medications), gets a fever, blood cultures are drawn and antibiotics are started in case the fever is evidence of an infection.  Thankfully, Allistaire’s fever seems only related to her response to the mismatch of the incoming donor cells.  Dr. Bleakley was quite pleased as the fever was evidence of an immune response without the danger of a full on cytokine storm.

In the last few days, Allistaire has started to get some mouth sores, an expected result of conditioning which especially impacts rapidly dividing cells.  This means all the cells lining the digestive tract from the mouth all the way out the other side are hit hard.  This can result in mucoscitis.  She is more gaggy and nauseous, has thrown up a few time and has begun to eat far less.  At this point we are prioritizing her drinking the necessary fluids and continuing to take her oral meds, (rather than giving her IV fluids and IV meds which would be harder on her heart).  We are attempting to have her drink a pint of milk at each meal time to provide some calories in the form of protein and fat.  She may soon require her nutrition to be converted to TPN and lipids which are essentially IV forms of sustenance.

The next storm on the horizon begins tomorrow with the two days worth of cyclophosphamide infusions.  A side effect of cyclophosphamide can be bladder bleeding which they try to counteract with hyper-hydrating and a medication called Mesna.  Because of Allistaire’s weaker heart, they are reducing the hydration from the standard 1.5 times maintenance to 1.25 and are hopeful that this will both be enough to prevent the bladder bleeding and not overwhelm her heart.  Another serious and potentially fatal, but rare, possible side effect of cyclophosphamide is acute cardiomyopathy due to hemorrhagic myocarditis.  Depending on how things go, Allistiare could be transferred from the ICU back to the Cancer Unit early next week.

Honestly, it is an absolute wonder that she ever made it to this transplant.  Whether or not she will survive the transplant or it will be successful at curing her of her cancer are totally separate questions.  I am just simply in awe that we are here.  The Lord will continue to be faithful, morning by morning, come what may.

To join the Bone Marrow Registry, go to Be The Match

Learn about how to donate your baby’s cord bloodFullSizeRender-25 FullSizeRender-23 FullSizeRender-38 IMG_2372 IMG_2365 IMG_2360 IMG_2356 FullSizeRender-40 FullSizeRender-39 IMG_7554 IMG_7543 IMG_2354 IMG_2352 FullSizeRender-41 IMG_2333 IMG_2325 IMG_2312 IMG_2303 IMG_2302 IMG_2300 IMG_2393 FullSizeRender-13 FullSizeRender-8 IMG_2391 FullSizeRender-7 FullSizeRender-12 FullSizeRender-14 FullSizeRender-13 FullSizeRender-21 FullSizeRender-22 FullSizeRender-19 FullSizeRender-27 FullSizeRender-29 FullSizeRender-28 IMG_2384

 

Brewing Storm

Standard

IMG_2054How many times has my Father extended His arm out over the waters and invited me to walk – to step out on shifting waters, to look Him in the eye and trust Him, to put one foot in front of the other and put all my hope in Him? How many days have the winds buffeted and the sky seemed angry and black?

I wrote the words above on June 18, 2013.  They continue to ring so true.  I was prompted to look back at that day because Sten and I received an uncommon, hauntingly beautiful gift today.  A strange message in broken English came to us from across the world.  Allistaire’s bone marrow donor from her transplant in 2013 reached out to us, seeking to make yet another connection with us, this time in voice, in words, no longer disembodied.   Katja.  Katja.  A beautiful name.  I say it again and again, like savoring a morsel, I smile as I say it, gleeful, amazed, surprised, utterly delighted.  This is the woman who gave of her bone marrow to my child, who saved the life of Allistaire, whose very cells have divided over and over and over and over for two and a half years to sustain my girl’s life.  SHE’s REAL!!!  I mean I knew that, of course she was real, is real, but somehow, to know her name, it is gift.  And it is gift to have even the smallest means of bowing low before her, to show her honor, to convey my thanks, to cry big silent tears of joy and gratitude for her compassion, her generosity, her selflessness to give, to give to a stranger.

Thank you Katja.

The timing of her contacting us is interesting.  I’ve actually been thinking about her, about Katja, this woman who was born in the same small span of time as myself.  She and I, two women who have the great mysterious privilege of giving life to Allistaire.  You see, if Allistaire is able to move forward to this second transplant, not only will all of Allistaire’s cancer cells hopefully be annihilated, so will Katja’s cells.  It grieves my heart.  I will mourn the death of those life-giving cells, those cells, those bits of Katja that have done so much for Allistaire – those cells that have protected her from bleeding out by making platelets and the white blood cells to fight infection and those most precious red blood cells who carry oxygen throughout her flesh.  I will be cheering on the radiation and the chemotherapy and praying for their utter conquest of her marrow and yet, just as with her first transplant, there will also be loss, also be grieving.

The way forward is still unknown, but millimeter by millimeter we take ground.  The week seemed to begin on Tuesday with her brain MRI.  Later in the afternoon we were in clinic so she could get platelets and I was eager to hear from Dr. Cooper, hoping to hear that the chloromas were vastly reduced yet again and she was considered in a good position to move forward with transplant.  Allistaire was busy with the Childlife Specialists, Callie and Jen, pressing her inked hands against great glass orbs.  Having watched Lilly’s hands being placed against those same glass ornaments, I asked Callie to help us with this now, to preserve a bit of Allistaire, for the possible times ahead when it may seem hard to believe she ever existed, when memories of her could blur and fade.  It was a uniquely painful and bittersweet moment, watching her joy at doing crafts and yet knowing in my heart why this was happening, knowing what very well may come true.  It was in the midst of her cheerful chatter with Callie and Jen that Dr. Cooper came to the door.  “Is it good?  Just tell me…”  He raises his shoulders and lets them slump back down.

The two chloromas in her sinus maxillary on the right and left have decreased both in dimension and bulk but there is a small new 1 X .8 cm chloroma on the right side.  All of a sudden, when I least expected it, I yet again had the wind knocked out of me.  I shake my head in bafflement, only sort of hearing as Dr. Cooper voices the possibility that this could take the option of transplant off the table.  “This could be considered progressive disease…”  But, but, but this is the nature of chloromas.  This is exactly the sort of disease she’s had for the past three years.  But, but, but…I called Sten trying to explain this news, gasping at the thought of there being nothing left.  I mean, there are other trials, but we can’t just keep doing this forever.  An internal conflict insures, the question of how far do you push, just how far do you go?  Is stopping giving up?  Lord have mercy.  And what does it look like to have mercy?  Is mercy finding a way forward, a tiny crack in the granite for the water to seep through?  Is mercy a closed-door, a ceasing from struggle?  But how?  Ever how?  How do I take this girl home to die and what would death look like?  Because I know I don’t want it to look like those chloromas taking over her face, stealing her away right in front of me, agonizing pain.  Oh God, Oh God, I’m going down and all the world blurs with tears and the scaffolding of my flesh feels like it’s giving way.  Just don’t give her red blood I think, my breath quick, she’ll just get tired, she’ll just sleep.  Yes, that seems the best way, I think, and I walk back to the room, to the room where my fluffy-haired, bright blue-eyed girl smiles her cooky little grin.

My alarm goes off.  It’s Thursday morning and I lie eyes wide in the dark, a heaviness on my chest.  Oh God.  Oh God, what will this day hold?  I think of those nights when I would go to bed crying, wake up crying, having to find a way to just will my legs out of the bed, to force my feet upon the floor, to rise and begin and face whatever might come my way.  A luxury car commercial playing recently, quotes what is often credited to Abraham Lincoln, “The best way to predict the future, is to create it.”  Hah!  I laugh a sad weak laugh.  Wouldn’t that be nice?  It has become abundantly clear how little I can do to create the future I long for.  The Christmas songs, taunt and ask, “All I Want for Christmas…”  I cry in the store as the song cheerfully plays on.  All I want for Christmas?  All I want is for my little girl to live, to not die, to not be ravaged and stolen away.

In the dark, I walk through the room to the shower, careful to be quiet and not wake Allistaire who is ever no less than 10 feet from me.  I pray, ineloquent, little fits of words, bits and bursts as I rinse out the shampoo, seeking the Lord, turning toward Him, longing to align my heart with His.  In weakness and fatigue, falling before Him, not crawling and quaking in fear, but fear of the Lord, a fear that says, Yes, Yes, you are God and I am not.  You are God and you are my dwelling place, you invite me into the shelter of your wing.  I am weary, I am frail and broken and you draw me to Yourself, you entreat me to come, and I have no strength to walk and somehow my Jesus comes and carries me to the throne and I say, You, You are God and I am not.  That is the sum of my prayers.  You Oh God have created the future, all of it, the past, the present, the future.  You know what this day holds and it is all swept up into the beauty of what you are creating.  In You, and You alone I trust most high God, who has come down low to me.  You have demonstrated Your grace, Your compassion, Your tenderness and I rest.  You are the place, the person in whom I choose to trust.  You know this day, Lord, I do not.  It is your day Lord.  She is your child God.  Oh Lord, do not let me go.

My heart slowed as I saw that Dr. Bleakley would be joining our meeting, The Arrival Conference, with Dr. Laurie Burroughs leading our time.  Did her presence mean it was all over?  Was she here to help convey the hard words that they had decided not to allow Allistaire this transplant because of the new chloroma?  It soon became clear that we were marching forward, that this chloroma had in fact caused them to push forward the process to begin the conditioning a week earlier.  Dr. Bleakley was there to provide continuity.  Dr. Bleakley said that prior to getting these most recent MRI results, she was still considering whether or not a reduced intensity conditioning transplant might be better for Allistaire, given her heart.  She said that this chloroma had made it clear that nothing less than the full force of all they could throw at her had even a chance of ridding her of this disease.

“You know Jai, most transplant centers would not do this transplant.  There are doctors on our service that do not think we should do it.  There are parents who would choose not to.”  The night before I had read through the protocol for the transplant and all the details of what could go wrong, of side effects.  There were of course the usual side effects – nausea, vomiting, temporary hair loss, fatigue, weakness/loss of strength, fever, loss of appetite, diarrhea, increased risk of infection.  But then,words taking up no more space than the others, yet whose weight left me gasping – sterility, brain injury, kidney failure, liver failure, heart failure, multi-organ failure, death.  Death.

“[Your child] has been diagnosed as having a fatal malignant disease that does not respond to conventional therapy.  Although remission may be able to be obtained for some length of time in a few cases, relapse will most likely occur after a short while.”

Those two faces, faces of two women I have come to know over the years, women in whom I have placed my trust, women who are brilliant, women with compassionate hearts, they tell me “not only is there a chance Allistaire could die in transplant, but there is a very good chance that she will die in transplant…Are you sure you want to do this?”

It feels as if I have always known this, as though all my life I have known about bone marrow transplants and the reality that they are brutal on the body and can kill in an effort to cure.  My heart pauses, looking out over the distance, looking out to the horizon, heart heavy and I say, “Yes.”  Yes, because we know what will come for her if we don’t try this.  There is nothing left.  We have at long last come down to this last great undertaking.  I had an image in my mind the other day of Allistaire grown, crying and angry, demanding to know why I had not just let her die.  I was driving east, away from Seattle, to stand witness at Lilly’s memorial, to extend my hand and heart in solidarity with Heather.  Sometimes I look at Allistaire and it seems impossible to me that she has cancer.  Does she really have something inside her that will rapidly kill her were it not for the enormity of this intervening?  But she looks so alive.  But I love her too much.  But she is just unfurling all the more, day after day, new delights in coming to know who she is, who she will become.  But, but…but all my love and all my yearning for her, all my delight of looking into her eyes and hearing her voice, it is not enough, I can not stop what will be.

Yes.  Yes, I understand the risks.  Sten and I choose to walk forward, knowing it is entirely possible that we are entering into the last weeks with her.  I have to stop myself from thinking it every time I look at her, every time I delight in the sweet curve of her cheeks, the swoop of her nose, her hilarious mannerisms, her perpetual coloring of rainbows and inability not to dance at even the hint of music, of her constant tip-toe walking, her goofy laugh, her tender face that tells me, I love you mommy.  I just feel my whole heart shattering in sorrow, my esophagus tightening, threading to cut off my breath.  Every joy feels like a double-edged sword, every joy a cutting, the threat of severing.  Somehow God just help me to live out this day, to take joy in this day and not let the possibility of tomorrow’s sorrow steal away today.

We left SCCA (Seattle Cancer Care Alliance) Thursday afternoon with the plan to go to clinic at Seattle Children’s later that day in anticipation of her bone marrow test on Friday that would also include a LP (Lumbar Puncture) to test for leukemia in her spinal fluid and Intrathecal Chemo (chemo that goes directly into her spinal cord).  But upon entering our room at Ron Don she felt warm and with dread I took her temperature.  101.6 degrees, a clear-cut fever.  Along with the fever, there was a strange rash of red spots on her arms and legs.  And in a flash any remaining days at Ron Don were swept away.  We went to the ER where blood cultures were drawn and antibiotics started.  The next day a bloodstream bacterial infection was confirmed, eventually the bacteria being pinned down to a common bacteria on human skin, Staphylococcus Epidermidis.  Vancomycin was started and eventually, Vanco-locks as well, which means the nurse inserts vancomycin directly into each of the two lumens of her Hickman Catheter and allows it to sit for eight hours at a time with the goal of ridding the actual plastic tubing of the bacteria, given it’s propensity to grow on such material.

Fortunately, the mysterious red spots went away and she has had no further fevers.  She’s feeling great and doing well despite now being stuck in the hospital.  We have a sweet room, Forest A Level 7 room 219, a room that looks out over the western end of Lake Washington, that allows a view of the sunset and the Space Needle.  If all goes well, she will be in this room for the next few months, with the earliest departure being sometime in February.  If all goes well, she will begin focal radiation to the chloromas in her sinuses on Monday, December 28th and continue through the 31st.  TBI, which is considered the first segment of conditioning, would begin on Monday, January 4th and wrap up the two-a-day sessions on the 7th.  Next would come the chemotherapy, Fludarabine, for three days.  A “day of rest,” and then the actual transplant/infusion of donor cells on Tuesday, January 12th.

This all feels so far off and yet it is coming in fast, just as I want the days to slow that I might savor.  She has to remain in the hospital the next two weeks in order to complete this course of Vancomycin which ends up coinciding with beginning the actual transplant process.  The upside to being in the hospital is that we are able to start tackling the tests and tasks that remain to get her ready for transplant.  Three major tests have already been completed: the brain MRI, the bone marrow biopsy and aspirate and the chest CT.  The chest CT yesterday showed that the COP (Cryptogenic Organizing Pneumonia) in her lungs has improved, with one spot being completely gone and the others reducing in size.  This is a huge relief, as the requirement to move forward was stable or improved disease in her lungs.  We should get bone marrow results by the end of tomorrow or Tuesday at the latest.

Tomorrow is a very, very big day.  Tomorrow Allistaire will have an echocardiogram and EKG, which feels like her biggest hurdle.  The doctors again want to see stable cardiac function.  While her BNP (measure of heart distress) had gone down from about 800 to the low 400s, it jumped back up as seen on Saturday morning’s labs.  Dr. Kemna explained that a small change in the body and/or heart can produce a relatively big change in the value of the BNP.  Dr. Kemna thought Allistaire looked great when she examined her on Saturday and was delighted to report she felt very warm and well profused.  So we shall see soon enough.  Tomorrow Allistaire will also have a nasal swab, nasal flush and a rectal swab all to test for a variety of viruses.  Some of the tests would block her from moving forward and others would simply be for the sake of information gathering.  She will also see the dentist to get a baseline of her oral health.  Sarah, the physical therapist, will do an evaluation of her range of motion as this can be impacted by the transplant process of being in the hospital and by GVHD (Graft Versus Host Disease).

Thank you to so many of you who have continued to walk faithfully with us on this long road.  Thank you for you for prayers and encouragement and Starbucks cards and meals and just for caring, for remembering us.

Tonight our little family of four dwells under three separate roofs.  Solveig may never see her sister again.  Nobody wants me to say this out loud, nobody can bear to hear those words.  I have to live the realistic possibility of those words.  I don’t know how many days I have left with Allistaire.  But then again, I have never ever known that.  I cannot predict the future.  But I rest in the One who has created it.  Father, oh Father, have mercy, have mercy, mercy according to your perfect love and perfect wisdom.

If you would like to offer the amazing gift of life to someone as Katja did for Allistaire, sign up to be a bone marrow donor HERE

IMG_2052 IMG_2049 IMG_2045 IMG_2044 IMG_2038 IMG_2036 IMG_2031 IMG_2032 IMG_1998 IMG_2012 IMG_2025 IMG_2026 IMG_2029 IMG_1995 IMG_1990 IMG_1989

 

Mysteries…

Standard

FullSizeRender-2FullSizeRender-3The conclusion of Allistaire’s biopsy is well, sort of inconclusive.  What we can say definitively after a week of numerous tests on the sample from her lungs is that it is not leukemia, not fungus and not bacteria.  Obviously this is all good news, actually fantastic news!  However, there is something going on in there.  We seem to be down to two remaining possibilities not previously considered.  Either the spots are evidence of a recovering infection or are evidence of Cryptogenic Organizing Pneumonia (COP).  The cells are described as hemosiderin laden macrophages.  Actually, the description of the tissue is far more detailed than that – I will include it below just so you can be in awe of both our amazing bodies and of the task of the pathologist.  In a way it would be surprising if the spots are evidence of a recovering infection given that they were not present on the previous CT, nor has she had any symptoms.  On the other hand, the sort of COP that Allistaire could have is actually a complication of a bone marrow transplant typically seen in adults and is a process of GVHD (Graft Versus Host Disease).  Allistaire did have COP in the spring of 2014 and was successfully treated with steroids.  Again, Allistaire has absolutely no symptoms of anything happening in her lungs, just this sole indication derived from the CT.

The plan is to re-scan next Wednesday, 11/25.  If the spots are the same or worse, she will likely be seen by a pulmonologist at SCCA (Seattle Cancer Care Alliance).  Dr. Cooper is also consulting with Dr. Carpenter, who is a pediatric BMT (bone marrow transplant) doctor who specializes in GVHD.  He is the doctor that directed the treatment of her previous COP.  It is not an optimal time right now for Allistaire to be on steroids if this is the required treatment.  Steroids suppress the immune system which added to the suppressive effect of chemo is a double whammy in terms of vulnerability to infection.

As of today, Allistaire has started what we hope and pray is her last round of chemo before transplant.  Just like the previous two rounds, she will start with five days of Decitabine followed by Mylotarg.  The exact number of Mylotarg doses is still to be determined.  It sounds like given the hoped for timing of transplant, it may make more sense to do only two doses.  Dr. Cooper and Dr. Bleakley are working together to sort out all the details.  Oh, I should also mention that Allistaire’s cytogenetics from her bone marrow also show no evidence of the MLL rearrangement by FISH which means no evidence of AML in her marrow.  This is in keeping with the clear results from the Flow Cytometry test.

As for today, Allistaire and I are delighting in having Solveig with us for a week and a half.  She flew in yesterday and Sten’s parents will drive out on Tuesday.  Sten will fly in on Thanksgiving morning and Allistaire will get her first dose of Mylotarg.  The bummer thing is that it seems Solveig has just started showing symptoms of a cold.  I don’t know how Allistaire will avoid it but I so hope she can.  We are looking forward to Thanksgiving with the joy of so much family with us.

 

Lung Biopsy – Microscopic Description:

H&E stained sections demonstrate lung with large foci of atelectasis and collapse intersected by bands of septa with increased fibrosis and vessels with hypertrophic walls.  There are increased macrophages within alveolar spaces, many of which contain hemosiderin or foamy material.  Hemosiderin laden macrophages are particularly prominent around bronchioles.  Also conspicuous are scattered small and large droplets of exogenous lipoid material in airspaces.  Well-inflated lung parenchyma in well-expanded areas shows thing delicate alveolar spat without fibrosis or significant inflammation.  Inflammation is patchy, mild to moderate and airway-centric, consisting predominantly of lymphocytes and plasma cells admixed with few neutrophils.  Infiltration of inflammatory cells in the bronchial epithelium is seen, and there is associated plugs of fibroblastic tissue (organizing pneumonia) as well as mucostatsis in airways.  Bronchioles also demonstrate smooth muscle hyperplasia and sub-epithelial fibrosis.  Many airways have moderate to marked luminal occlusion by well-established collagen deposition (constrictive/obliterative bronchiolitis) as highlighted by Movat pentachrome stain.  There is mild medial thickening of pulmonary arteries and veins show intimal fibrosis as well as muscular hypertrophy.  No atypical cellular population is seen, confirmed by CD15 and lyzozyme stains.  Viral cytopathic changes are absent.  Fungal and bacterial stains are negative.

T-Cells Tomorrow/Tuesday!!!!

Standard

IMG_2954The last several days have been a whirlwind so this will be brief…

Tomorrow is the big day which really, won’t look like much at all on the surface.  Like countless days before, Allistaire will have labs, see the doctor and have an infusion.

The day begins at 8am at Seattle Cancer Care Alliance with a lab draw followed by being seen by Dr. Ann Wolfrey, the BMT (Bone Marrow Transplant) doctor who is assigned to this trial.  Per trial protocol, she will examine Allistaire and make sure she is fit to proceed with the T-cell infusion.  We will then head over to Seattle Children’s Hospital Hem/Onc (Hematology/Oncology) Infusion Clinic.  Around noon, the research nurse for the trial will arrive with the cells and the two-hour infusion will begin.  Allistaire will be closely monitored in clinic until 5pm at which time she’ll transfer just down the hall to the Clinical Research Center where she and I will spend the night.  Dr. Wolfrey will also be spending the night in order to respond to any issues that could come up and to examine Allistaire in the morning.  Assuming all is well, she’ll be done around 8 in the morning.

Severe reactions to the T-cell infusions have not been seen on this trial as is the case with the CAR (Chimeric Antigen Receptor) T-cells used to combat the more common type of childhood cancer, ALL.  This is both good and bad.  Because of the poor condition of Allistaire’s heart, she would not qualify for the CAR T-cell trial were she to have ALL.  However, the extreme immune response may also be indicative of the effectiveness and amazing success seen over the past two years with this new ALL treatment.  As I have said, Allistaire will actually be the first child to receive these genetically modified T-cells that target the WT1 protein on leukemia cells.  One thing that makes her different from other participants on this trial, besides being a child, is that she is on absolutely no immune suppressants. Most folks on the trial have much more recently had a bone marrow transplant and are likely to have at least some GVHD (Graft Versus Host Disease) which necessitates the use of some immune suppressants.  While Allistaire had mild acute GVHD after her bone marrow transplant, she has been off of steroids for well over a year so these T-cells will have nothing to suppress or hinder them.  Drops in blood pressure and fever are possible signs of an immune response.  Actually determing the effectiveness of these cells for Allistaire would take much longer and really can only be determined with the scans and bone marrow tests she always has to monitor her cancer, none of which have yet been scheduled for the future.

I am so thankful for this open door.  It would have been a very hard pill to swallow if Allistaire had never had the opportunity to have this genetically modified T-cell infusion, knowing these cells were crafted just for her.  At the same time, it has been a very long time since her last chemo and this process of gaining the IRB approval has added weeks to the time that her cancer has had the opportunity to grow.  Honestly, the doctors are not super optimistic about the effectiveness of these T-cells against chloromas which are Allistaire’s biggest challenge.  Boy would I just love it if these T-cells were her cure and we could at long last be done with this whole crazy thing.  On the other hand, if they could just buy her a chunk of time in which her heart could continue to repair and get stronger so that she could go onto have a second bone marrow transplant, well, that would be awesome.  I can’t think too much about it though honestly.  Even a good road ahead would necessitate many more months.  I’m flat worn out.

Another mom we met months and months ago stopped me in the parking garage at the hospital today.  Her little guy has neuroblastoma and despite doing all sorts of crazy intense treatment, he’s not in remission.  She asked me how I do this.  I didn’t tell her I rely on God.  I told her sometimes I think I’m going to lose my mind.  Sometimes I feel like I’m being crushed in a vice.  But what choice do we have?  I asked if she’ll be in clinic tomorrow and she said yes.  I want her to know I feel the searing pain, the deep, deep ache.  Jesus comes to us in our sorrow, in our broken heap of ourselves, our messy, screwed up lives.  He mourns with us.  I mourn with her.  I mourn with another mom who lost her sweet girl earlier this spring.  She amazingly, courageously, compassionately texts me regularly to convey her sweet heart toward us, cheering us on.  I so want Allistiare to live.  But sometimes I wonder, am I to cross over that line that I might sit and mourn with those who have lost their child?  Am I to know that loss that I might have a voice in that dark, brutal land?  With weeping heart and trembling hand, quavering voice, may I sing of a God who meets us in the dark, pointing to His beauty, resting in His wild audacious promises of redemption, or resurrection, of love that defies our small ideas of good.

I flew back to Seattle from Bozeman early this morning.  I went home for just over 48 hours so I could be there for Solveig’s birthday party, to witness the mysterious tribe of 4th graders unfurling, running laps around the house and through the yard, squirt guns and chocolate cake and massive balloons and Solveig giggling over the fact that Jake wrote, “Love Jake,” on her birthday card.  As our plane headed west the clouds slowly increased.  We flew at 25,000 feet.  I thought I could make out the great curving rend of land to the east of Whitehall and then the scarred earth of the mine nearby.  Little flits of clouds became strangely speedy fleeces blocking the land.  Here and there whole canyons and low places where entirely engulfed in white.  Having grown up in Washington, countless days passed with that blanket of gray, drab, draped over the curvature of our wee bit of sky.  A smile flooded by fatigued face as I remembered the first time I flew up out of the clouds of Seattle as a teenager into a brilliant azure sky.  It was disorienting in a laughable, delightful sort of way.  But, but…I thought the world was gray and drab and depressing?!  And all this time, just beyond the scope of my eyes there existed a beautiful reality far more vast in its expanse than my view of horizon to horizon?  So my view is not all there is?

The clouds, they come and go.  The blue of sky is always there, always, even when I cannot see it at all, even when it seems the whole world is made of drab grey.  Father above, thank you for your constancy, your vastness, your reality that transcends my transient life and circumstances.  Tomorrow is the day you have made, and I will be glad in it!

By the way, tomorrow Allistaire will wear a very special shirt.  It is the same shirt, just two sizes bigger, than the one she wore on a very special day just over two years ago.  On June 18, 2013, Allistaire was given another infusion, one that like that of tomorrow, looked deceptively simple and uneventful.  On that day, Allistaire was given the stem cells of a woman from the other side of the planet, in order to “rescue” her, in order to give her a chance at new life after the old marrow had been wiped away.  Tomorrow, that woman’s compassionate, generous heart has made a way, yet again, for Allistaire to have another chance at life.  It is her T-cells that have been genetically modified and will be sent rushing through Allistaire’s tubies into her flesh.  Thank you to this unnamed woman, thank you.  We long to meet you in person one day.  We are so indebted to you.  If YOU would like the opportunity to save someone’s life, you can sign up at Be The Match.Org to be on the bone marrow registry.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2 Corinthians 4:16-18

Jail Break

Standard

IMG_3589I used to think I was safe, that wild animals, the beasts, the possibility of having my flesh torn off of bones, lay up there, out there, far off in dark mountainous woods.  I thought it would be easy to simply steer clear of such terrors.  As though somehow my own willing of my footsteps could keep me from entering their realm, that by hope, optimism, some silly assumption of impenetrability, it would not be so hard to keep those ravages at bay.  I walked in a sunlit land, blithely believing, perhaps not even believing but never even thinking that they might tear down the hillside at terrifying speeds, absolutely bent on destruction.  They do not see a heart full of hopes, of dreams, of ideas, of lists of yearnings, eyes bright.  Their horrible feet carry them, saliva flinging back behind as their daggers flash, crazed eyes.

Flood waters tearing homes in half, separating husband and wife with children.  Father of Solveig’s classmate, life cut short from heart attack.  Jens on a mountainside.  Nine year old girls sold into slavery by Isis.  Kassidae home from yet another T-cell trial that utterly failed to stop her cancer.

What is it like to have no more options?  How can I fathom a journey where suddenly the road simply ends.  No destination reached, just a faint trail blending into nothing, melding into the landscape.  And then what?  And then what?  Where does one go from there?

I see a small child standing alone in an open space.  Nothing in their hands.  No clothes.  No defense.  Utterly vulnerable.  I stand and watch, unable to move, unable to raise my hand to stop what I know will come, what is coming.

The child shivers, confusion in their eyes.  And then you sense it, before even sound reaches your ears.  Some sort of terrible rushing, some silent invisible foe rushing through the forest.  At last it breaks through the trees, snarling, feet hardly touching the ground as it bolts for your child, savage mouth wide.  And do you turn away?  Can you stand to watch the beast tear into your child’s flesh?  Dare you know the moment their life is extinguished?  How much will be ripped and torn before their eyes go limp and lifeless?

I heard these words in a beautiful song, a song meant to comfort, a lullaby.

“Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake as long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember

If you feel alone
Facing the giants
And you don’t know
What to do

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe”

My heart was breaking as I listened to these words.  Hot silent tears slid down as I drove, facing forward, intent on the task of getting there.  “You’ll have your own battles to fight when you’re older.”  But no, no, Allistaire did not get to be older before she had her own battles to fight.  She was just 21 months old when her battle against this ravaging beast first came, intent on taking her life.

“Mommy, I like that part, ‘you feel alone, facing the giants, and you don’t know what to do.”  Her soft sweet voice came to me from the back seat.  Of all the words in all the songs, these are the one’s she speaks out loud, repeats back to me, the words that most resonated with her little girl heart.

You think, unconsciously believe, that as a parent you can protect your child, that somehow, by force of will you can magically keep them from harm.  Surely there is nothing more core to being a parent, to being a mother, than protecting the life of your child.

But my love, oh my love, so fierce, stuffed full with all my might and zeal, my hope…it is powerless to protect against some enemies.  I never made that promise to keep her safe, I just assumed it would be true.  Of course she will be safe.  Of course I can wrap her up in a hug and overcome any giant.

No.  There may come a time where there are no options left and I will hear the rushing of wind through branches as that beast comes tearing through the forest, breaks out into the opening and sinks its wretched brutal teeth into the one I love, this time sparing nothing.  I may be left with my heart bleeding out in the open space, tattered, wounded, ravaged child in my lap, never again to see her bright eyes, never again to hear the most beloved sound on the whole earth, her laugh, her voice full of wonder.

But I know this.  She will not stand alone.  If such a time comes, I will stand with her, hand gripped in mine and I will face that beast with her.  I will not turn away and I will not leave her, and that may be all that I can do.  My eyes will weep until my own flesh is laid to rest.

To Shannon, to Kate, to Susan, to Becca, to Rachel, to Julie, to Beth, to Devon, to you many more mothers who have walked this road, who stood with your hand gripping your child’s as that beast came to devour, my heart weeps with yours and oh how I desperately long for a better day.

For those of you who know that Allistaire was discharged from the hospital almost two weeks ago, these words must come as a surprise.  What you see on the surface is so far from the full story. People constantly comment, “She looks great!”  They ask, “How is she doing?”  How do I answer that question?  On Monday at the playground, after having climbed up the slide twice in a row, Allistaire suddenly said she didn’t feel well, she was panicked and in pain but couldn’t explain what was really happening.  There was terror in her eyes.  I cradled her and hoped she would calm down. Maybe she just overexerted herself a little.  She cried out in anguish, “Mommy,” over and over, yet I could not understand the source of her pain or her fear.  I asked my five-year old daughter, “Do I need to take you to the hospital?” as though she could answer this question.  Was she overreacting?  What was she feeling?  She threw up in the bathroom.  Well, she was on day 6 of chemo and this was the first time she threw up, so really not concerning in itself.  Of course nausea can be a sign of heart failure too. I scan through all I know in my head, assessing her energy, her sleep patterns, her appetite, food consumption.  Could it be her heart?  She continued to freak out after throwing up and we left the bathroom.  “Mommy, can I feel the sand?”  I took off her sandals and gently sat her feet down in the sand at Golden Gardens.  Immediately she calmed.  Immediately she was fine.  What was real?  What is true?  How much of that was based on something of significance?  How much is her just working herself up?  I dreaded having to relay this incident to the cardiologists.  It’s a lovely day at the park, but just below the surface are constant swirling realities that threaten to steal it all away.

In the first days of being out of the hospital, Allistaire and I gorged on our sudden freedom, on sunlight and bird song and starlight and bright moon, on playgrounds and sleeping without interruption, on hours of daytime without nurses and doctors and hospital food trays.  Solveig and JoMarie arrived last Wednesday evening and my heart swelled with the joy of their laughter and heads clustered together in play.  Everyday playgrounds, picnics and beaches, throwing rocks into water and sun glinting off lapping waves.  Caterpillars on fingers and squealing.  My faced beamed with delight, with wonder at simple ordinary life.  How much more wondrous it is than people realize!

You think that leaving the hospital is some signal of victory, of progress, of normalcy.  And so it may be, often is, though not always.  We left on May 18th, not having accomplished what we came to do.  In some ways the girl who left the hospital was worse off then the girl who came to Seattle back in October.  The great victory was that she successfully weaned off Milrinone.  A huge accomplishment which has made way for a few options, far more than none.  But her heart is far too weak to endure a standard transplant for AML which includes TBI (Total Body Irradiation).  So we left the confines of this hospital after 130 straight days, her only moments outside were the 30 seconds here and there strapped onto an ambulance stretcher as she was transported to and from The University of Washington for radiation.  We went straight to the playground.

For 11 of the past 12 days since she was discharged, Allistaire has been to the hospital for a variety of appointments.  On Tuesday the 19th she finished focal radiation to her left leg where one new chloroma (solid leukemia) showed up on her last PET/CT scan.  On Wednesday she saw Dr. Todd Cooper, her new primary oncologist.  Dr. Gardner is pregnant with twin girls and so we are making the transition to having Dr. Cooper, who is the newly hired head of the leukemia department and an AML expert.  He is the doctor that Dr. Pollard had hoped would come to Seattle Children’s.  He has been tasked with developing a High-Risk Leukemia program for Seattle Children’s.  So when Dr. Gardner asked who I’d like to have as Allistaire’s new primary oncologist, it was a no-brainer to ask for Dr. Cooper, a kind man from Atlanta who is a super smarty pants AML doc.  In our first outpatient visit with him, he relayed that Dr. Pollard had called him about Allistaire to make sure he was up to speed with all the details of her medical history.  I cannot tell you how amazingly cared for I feel here at Seattle Children’s.  We are blessed beyond words by the team that journey’s with us.  After seeing Dr. Cooper, Allistaire began seven days of Azacitadine, the same chemo she got last time.

Prior to leaving the hospital, I met with Dr. Gardner and Dr. Marie Bleakley, the transplant doctor we’ve worked with at several significant points.  It was really great to have them both present for the conversation.  Dr. Gardner began with explaining her reasoning for waiting so long for Allistaire to begin chemo again.  I had grown frightened with the incredible amount of time since her last round of chemo, knowing the immense need to keep her in remission and being aware that she was a month beyond the traditional time of starting a new round.  Dr. Gardner stressed that because Allistaire’s marrow has been so incredibly slow to recover, her greatest immediate risk is that of an infection that one: she wouldn’t have the white blood cell defenses to fight and two: that could overwhelm her heart.  So finally, nine weeks after the beginning of the previous round of Azacitidine, Allistaire would begin another round.  She also stated again that given Allistaire’s heart, TBI, known to have long-term consequences to the heart, was not in her best interest at this time.  Dr. Bleakley went on to describe a “midi-transplant” which has much lower levels of radiation (4 centigray as opposed to 12 in TBI) and heavy-duty myeloablative chemotherapy, and a “mini-transplant” with even lower levels of radiation (2 centigray) and non-myeloablative chemotherapy but high-dose steroids.  I’ll forego going into the details of how each of these work and the pros and cons, but suffice it to say, the mini-transplant is not a good option as it is intended to extend life in the old who cannot endure hard-core conditioning.  It is unlikely to provide a cure and has a lot of potential for GVHD (Graft Versus Host Disease).  So while the “midi-transplant” is an option for Allistaire, with a gleam in her eye, Dr. Bleakley had a different proposal.

I left the room with hope.  With fear yes, always there is fear, we walk ever into black, into unknown.  But with hope, with a bit of upturned grin.  Dr. Bleakley has proposed that Allistaire’s best option is to participate in the WT1 trial.  This is a trial through Fred Hutchinson Cancer Research and uses genetically modified T-cells which have a specially designed receptor to bind to the WT1 protein found on 90% of leukemia patients cancer cells.  Normally a bone marrow test would be done to confirm expression of the WT1 protein in the cancer cells, because if it is not present, the receptor is useless.  However, because Allistaire has not had any detectable disease in her marrow since she relapsed in October, they decided to proceed without this info for now.  At the end of this round of chemo, she will have another bone marrow test performed and if there is disease, they can then test for the WT1 protein.

So far 17 people have participated in this trial.  Of the people who were in remission going into a bone marrow transplant and remained in remission leading up to getting the modified T-cells, 100% have remained in remission for over a year that they have been followed so far, this in light of a normally high relapse rate post-transplant.  There are two people who relapsed after transplant and then got back into remission and then received the modified T-cells.  This is the arm of the protocol that Allistaire would fall into.  I believe I was told these people are also remaining in remission. The remaining group relapsed after transplant and did not get back into remission and despite having the T-cells are not doing well or have already died.  It seems the T-cells work best when there is little to no detectable disease.  We will know the state of Allistaire’s disease after we get results from her next set of tests around June 16th.  How I pray she remains in remission, but she has been receiving very mild chemo and has gone great lengths of time with little to no defense.

What makes Allistaire unique in this trial, is that, should she be able to get these TCR T-cells, she will be the very first child to do so.  I will have to ask again if this is being done anywhere else, but she is certainly the first child ever to have this sort of therapy here (Seattle Children’s/Fred Hutch).  There are many kids with ALL (Acute Lymphoblastic Leukemia) who have by now received modified T-cell therapy.  But the targets are quite different.  In Lymphoblastic leukemia, the cancer is in the B-cell line and CAR (Chimeric Antigen Receptor) therapy is used to destroy the cancer and in doing so, it forever destroys the patients’ B-cell line, requiring life-long transfusions of Immunoglobulin.  The first child ever to receive this therapy was a little girl named Emma in April 2012 at CHOP (Children’s Hospital of Philadelphia).  She has remained in complete remission since then.  Seattle Children’s Research along with the Ben Towne Foundation has provided this therapy to a growing number of children with great success.  People are coming from around the world for this treatment.  A month ago I met a woman named Solveig from Germany who was here with her son, Nicolas, who was getting CAR-19 T-cell therapy.  Allistaire’s cancer (Acute Myeloid Leukemia) is found on the myeloid line – cells that you cannot forever destroy and rely on transfusions for, cells like red blood cells, platelets and granulocytes.  Thus the scientists have needed to find another way to attack these cells.

The folks at Fred Hutch have been incredible.  I am amazed, honored and humbled by their passionate desire to make a way for Allistaire to participate in this trial.  Through conversations with Dr. Bleakley, Dr. Dan Egan (the principal investigator on the trial) and Dr. Phil Greenberg (the head of the lab who has designed this therapy), it is so abundantly evident that they see Allistaire as an individual and they see her as the child that represents the children who are also in desperate need of this therapy, children who have run out of options, children “destined to die of their disease.”  They have re-written the protocol to accommodate her, to make way for future children.  The original weight requirement was 30kg because of the numerous blood draws required for testing.  They worked it out to reduce the limit to 15kg, Allistaire was 17kg at the time they made this change.  Additionally, because this weight change equals treating much younger patients, they went through a lengthy, involved process to set up approval to give this therapy at Seattle Children’s.  Up to this point, the youngest patients have been in their teens and were treated at The University of Washington where adults are treated.  They have worked hard to make a way through for my girl.

On Sunday evening, May 17th, I was delightfully honored to be invited by Julie Guillot to the Premier Chef’s Dinner, a fundraiser for Fred Hutch.  As I have mentioned before, Julie and her husband, Jeff, lost their son Zach to a complication of his third transplant for AML.  At that time they were helping fund the research that would create T-cells that would give Zach another measure of defense against AML.  When Zach died in February 2014, Julie’s zeal and wild fiery passion to bring an end to AML and better treatment options, only intensified.  When Allistaire relapsed in October 2014, she invited Allistaire and I to a little party for Dr. Greenberg’s lab to celebrate the $1.7 million dollars Julie and Jeff had helped raise for his research thus far.  It was at that time I first met Dr. Greenberg in person and introduced he and his lab staff to Allistaire.  Jeff and Julie were the challenge fundraisers for the fundraiser on May 17, 2015, having pledged to match up to $400,000 of money raised that evening.  In making this commitment, they were given the privilege to direct where the funds would go.  Their whole motivation was to see the immunotherapy through Dr. Greenberg’s lab flourish and accelerate.  By the end of the amazing evening, $1,280,000 was raised to accelerate targeted cellular immunotherapy research at Fred Hutch.   I had the joy of standing up and representing the hopeful first child to benefit from his research.  Dr. Greenberg spoke to me on two different occasions during the evening, each time with multiple hugs initiated by him.  You could see the eager joy and hope in his eyes.  It was a wondrous thing to stand alongside a man who has dedicated several decades of his life to this research, generous donors, a fellow cancer mom who lost her son – for whom this therapy is coming too late, and I, the mom of a child who is desperate now and who needs this treatment immediately.  The full circle was there – scientist, patients, donors.

Doors are opening but still the tension remains high-pitched.  There is the illusion of normalcy, there is light-hearted laughter on the surface, but there is a mighty undercurrent, ever threatening to pull Allistaire down, deep into the suffocating dark.  First financial approval for the trial was required which was confirmed by Blue Cross Blue Shield of Montana this Wednesday.  This allowed the Unrelated Donor Search Committee to initiate their part which is to request Allistaire’s original donor to be contacted and for a request for consent to use remaining donated cells for this trial.  At this point, unlike the CAR t-cell trials, the WT1 trial must use bone marrow transplant donor cells.  While Allistaire is not in a position to get a transplant at this time, she thankfully does have cells stored at Fred Hutch from her original donor from her transplant in June 2013.  Extra cells are stored for two years at no charge and then you have the option to pay to have them stored.  This June 18th, will mark two years.  I pray this woman can be found quickly, quickly and that her heart will be moved again to give, this time solely of her consent.  It feels sort of terrifying to know that Allistaire’s one shot is dependent on a woman on the other side of the world, but then again, she gave once in a much greater way, we so hope she will help make a way through for Allistaire again.  If we can gain her consent, processing of the cells will begin and takes approximately a month and a half.  Speed is of essence.  The T-cell therapy much be coordinated with Allistaire’s chemo schedule.  It is my great hope that there may be a way for Allistaire to get these cells prior to needing to begin another round of chemo.

This therapy could be Allistaire’s cure.  That would be BEYOND AMAZING!!!!  And if not a cure, we pray the T-cells will buy her more time, time for her heart to heal, time for her heart to gain strength to enter the next battle of a second transplant.  What’s so wild to me is that Allistaire would be inpatient for ONE day for this therapy.  ONE DAY!!!!  And this T-cell therapy does not result in the intense cytokine storm response as it does in the CAR T-cell therapy which puts most kids in the ICU for some period of time.  No one in the WT1 trial has had to go to the ICU.  In fact, Dr. Gardner told me that Allistaire would not be able be eligible for the CAR t-cell therapy because of the extreme dangers it can pose.  For the WT1 trial, they would ask her to stick around for a few weeks for some blood draws and observation and then remaining blood tests could be done at home and simply mailed over to Fred Hutch.  It all seems too good to be true.  What a wondrous world it will be when this is the way cancer treatment is conducted.  Can you even imagine?!  I must highly, highly recommend the documentary, “The Emperor of All Maladies,” by Ken Burns!  It is based on the book of the same name which is also extremely fascinating and worth reading.  It is simply thrilling to see how far cancer research and treatment has come and the heightened hope that immunotherapy will change the course of how cancer impacts our lives – for one in every two men and one in every three women who will get cancer at least once in their lives.

I am weary, so utterly weary.  But what choice do we have but to walk on?  And we do.  We walk forward, giving thanks for so much blessing.  Sometimes it feels like there being a way through for her is an utter impossibility, but then I am reminded of how many “impossibilities” have come to pass, how the insurmountable has been overcome.  My yearning for her life is like a burning fever that never lets up.  Every moment is on high-alert, racing through the myriad of questions to try to determine how she is doing, to assess what is going on for her.  There are now so many interwoven layers of medical complexity and reality.  There is cancer, there is heart failure, there are medications (13 different ones every day – 26 doses), there is being deconditioned by months lived in the cramped confines of the hospital.  I see her on the play ground and I watch kids younger than her charge a hill or climb with confidence.  She tires quickly, she is fearful.  Her legs hurt.  Is it cancer on the move?  Is it lack of blood getting to muscles?  Is it simple fatigue brought on my muscles that have not been asked to do much in so, so long?  Is she nauseous?  Is it from chemo?  Is it from the magnesium she must take because her Lasix makes her waste it, magnesium that causes tumultuous abdominal cramping?  All her pain signals are mixed up so that she just finds herself in a frenzy of discomfort, in a frightful maze desperate to get out but with no clear direction.

Leaving the hospital balloons the craving for normal, it makes you think you should be normal, all the standards shift and you see your child not as one among the many other sick kids but among the normal.  At the same moment that I am delighting in the warm day and Allistaire playing in the sand, going back to the lake shore to fill her bucket again, I am aware of the dangers in that sand, in that water.  I’ve put parafilm on the end of her tubies and tucked them tight into her swim suit.  She wears her sun hat and is lathered in sunscreen.  Her medications make her more sensitive to the sun, more likely to burn.  I’d like to avoid skin cancer.  She doesn’t know what to do when the other little girl approaches silently to play with her and share her toys.  She is fearful and defensive.  My heart sighs knowing how little interaction she’s had with other children, how to navigate such situations.  In her cardiology appointment the great nurse, Jason, calls her precocious.  Yes, yes, she seems to be quite articulate for a five-year old.  There are ways that her deficits are glaring and there are odd ways that she has walked so much further in life than the vast majority of five-year olds.  What I know is that I love her dearly, I long to keep her safe, to see her have long life.

I pray to God, I seek to be reminded, imbedded in the truth of His infiniteness.  I ask Him to remember that I am finite.  I ask Christ to pray for me as He prayed for Peter, that my faith would not fail (Luke 22:31-32).  I ask Him to help me to lift my eyes, to take in the long view, to help me in this brutal moment, these series of endless days, in this tedious fight against cancer, in this relentless tumult to see His face throughout all these circumstances.  We go to the playground.  We look for the first stars at night, our necks craning back.  Alllistaire points eagerly at the moon, not framed in the hospital window, but in the vast expanse of the evening sky.  We listen for birds and bend our noses to flowers.  Our feet follow little paths through marsh land and cat tails, spider webs bright in the afternoon sun.  We live, we delight.  We go to the hospital again and again into little rooms with blood pressure cuffs and vials of blood that tell of the world within which eyes cannot see.  We walk forward through this intertwined life, messy, unclear, wondrous, of such enormous precious value.  We give thanks to the Lord and ask for more.IMG_3470 IMG_3483 IMG_3588 IMG_3591 IMG_3597 FullSizeRender-6
IMG_3626 IMG_3636 FullSizeRender-2 FullSizeRender-3 FullSizeRender-4 FullSizeRender-5 FullSizeRender IMG_0003 IMG_0013 IMG_0018 IMG_0021 IMG_0022 IMG_0023 IMG_0024 F7E5F4EF-4C94-4A4F-858B-10F1CE61C502 C7860EE9-0E66-45B9-954A-93ABD4DF8346

Help The Hutch 2015-355-(ZF-8131-68186-1-002) Help The Hutch 2015-486-(ZF-8131-68186-1-001)

Lyrics above are from J.J. Heller’s song, “Keep You Safe.”

Juicy

Standard

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

Standard

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

IMG_1561 IMG_1562 IMG_1570 IMG_1572 IMG_1577 IMG_1580 IMG_1590 IMG_1597 IMG_1604 IMG_1608 IMG_1611
IMG_1613 IMG_1620 IMG_1622 IMG_1623

One Year Post-Transplant Long Term Follow Up

Standard

IMG_9471“The peace is partly in being free of the suspicion that pursued me most of my life, no matter where I was, that there was perhaps another place I should be, or would be happier or better in.”         ~Wendell Berry

I went to see, “A Fault in Our Stars,” the other day. I wanted to see how Hollywood would portray pediatric cancer, this time in a group of three teenagers. One line stood out to me. Hazel Grace, one of the main characters that has battled cancer since she was 13, said something along the lines of, “I just don’t want this particular life.” I get that. How many times have I looked out over the landscape of my life and these gut wrenching circumstances and thought, “Can I just trade this life in for another?” This is definitely not the life I envisioned for myself.

Why subject myself to two hours of woe? Why do I need to watch cancer ravage more lives, even if they’re fictional? I knew my heart would be battered again but I find myself at times willfully choosing to thrust myself into the midst of a sad story, not for some masochistic desire for sorrow, but really, for love. I have a hypothesis. If we cultivate our imagination, we increase our ability to empathize and demonstrate compassion, and thus, to ultimately love better. One reason I delight so in stories is that they put me in the place of a person I can never be. I will only ever live one life. But stories craft a world for me that allows me to enter in and see histories and places and lives that are out of my reach, that are foreign to me. In stories I am offered a view through someone else’s eyes and I can begin to grasp the joys and wounds of another time and another place. We moved to Montana in part for our girls to have more opportunity to cultivate their imagination. How wondrous that rock and stick and hill can supply such grand stories. How even more fantastic that imagination can make our hearts swell with compassion as we imagine ourselves in the place of friends and family whose beloveds have been shot down in yet another school shooting.   Empathy drives compassion which in turn produces acts of love.

Perhaps I am in greater need than the average person to cultivate this need for imagination driven love, for I am actually quite poor at loving well. I lit into Sten the other morning, going on and on about how I couldn’t stand the smell of his after-shave. When I saw the wounded look on his face, compassion did not rise up, defensiveness did. When I berate Solveig for some failing, what I have so often failed to do is put myself in her shoes, imagine life from her sweet 7-year-old eyes. I rage and bellow because I see only from my finite perspective.

I wonder too if imagination might aid me in faith. There have been quite a number of points over the last 3-4 years that I have surveyed my life and wondered, “Hey God, I’m not really sure how this is/was a good idea.” “Hey God, really? This is your grand plan? You think this is a good way to go?” “If you’re in control, why would you let this or that happen?” God calls me to trust His word, His promises. He calls me to walk by faith. In the book of Hebrews it says, “Now faith is confidence in what we hope for and assurance about what we do not see…By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.” God is up to something. The creator God is creating something out of this little life of mine. What will one day be visible is not visible now. What will be seen is not made of what is now visible! God gives glimpses in His Word of what will one day be visible, of the bounty He promises when His plans are complete. God has given me glimpses of how He has and is using these tedious and brutal days. My imagination for what may be, fuels my faith to rest in His promises.  I am banking on the hope that there is more to all this than I can see.

One year ago, I could not have imagined Thursday, June 5, 2014. It was my birthday. I turned 39 and I got the most phenomenal, glorious gift I could ever ask for in this temporal life. One year ago, Allistaire was undergoing daily radiation and then eradicating chemotherapy in preparation for her bone marrow transplant. A year ago, I sat across from Dr. Dahlberg who started our meeting by saying that what we should be talking about is how there is nothing left for Allistaire, how a bone marrow transplant would give her a less than 10% chance of survival and therefore, it wouldn’t be offered to her. A year ago, her cancer had spread to eight places outside of her bone marrow and suddenly halted. No organ was touched by leukemia. A year ago, we were wading into deeper and deeper unknown and desperate, desperate hope that somehow, some way this clinical trial for transplant without remission provided through Fred Hutchinson Cancer Research Center, would save her life. A year ago, I had wondered countless times what the Lord was up to.

As I sat across the conference room table from Dr. Carpenter, in a small room looking out over Lake Union, I could not have imagined this day would ever come.

“It doesn’t get better than this,” he said. Oh how I cherish and savor those words and run them over my mouth and mind over and over, in shocked, joyous exaltation. “It doesn’t get better than this.” On Monday, June 2nd, Allistaire had 11 vials of blood drawn for a phenomenally long list of tests. In the following three days she had an echocardiogram, an EKG, a bone marrow aspirate, a skin biopsy, a CT and saw the cardiologist, the physical therapist, dentist, ophthalmologist, nutritionist and the oncologist. Every single test, everyone, was good. The flow cytometry test showed zero percent detectable leukemia, or as the pathology report reads:

Interpretation

Bone marrow, aspirate: No abnormal myeloid blast or monocytic population identified (see comment).

Comment

There is no immunophenotypic evidence of residual acute myeloid leukemia by flow cytometry.

Clinical

4 year-old female with history of AML.

Immunophenotyping by flow cytometry after lysis of the erythroid cells reveals that the white blood cells consists of .34% blasts (CD34+), 77.4% maturing neutrophilic forms, 5.4% monocytes and 13.1% lymphocytes.

This is how the Lord shouts His good gift to me, in these strange, wondrous words that delve the marrow of my child.

The cytogenetics/FISH report says this:

Result Summary: Normal female karyotype; No evidence of MLL rearrangement by FISH

Interpretation: These results are consistent with post-transplant disease remission.

The chimerism test showed 100% donor cells!

Her heart is functioning normally and is not dilated. Her kidney function is normal. Her liver function is normal. Her strength and flexibility are normal. There is no evidence of Graft Versus Host Disease (GVHD) in her skin, mouth, eyes or anywhere!

Her lungs show marked, significant improvement since being on steroids for the last 3 weeks for her Cryptogenic Organizing Pneumonia.

Even her immune system, her “immune reconstitution,” as they call it, is doing amazingly well! Dr. Carpenter said that he was impressed at how well her various cell types are doing. A number of her white blood cell types are at totally normal levels. Others are better than the average person one year post transplant – even despite 7 months of chemo after transplant. I cannot tell you the phenomenal number of details they looked at in assessing Allistaire but the sum statement is:

“It doesn’t get better than this.”

Yes, there are down sides.  Most specifically, the targeted Busulfan, one of the chemotherapies that was part of the conditioning for transplant (as in the napalm of chemo), has most likely had a very toxic effect on her ovaries.  This means that we should expect that she is infertile and additionally, because her ovaries may not be able to produce hormones as they would were they healthy, she may have delayed puberty and need hormone replacement.  On the other hand, this particular clinical trial transplant did not include TBI (Total Body Irradiation) as the originally planned/standard transplant would have.  What this means is that her body was essentially saved from a nuclear blast and that her pituitary gland and thyroid have been left largely untouched.  TBI would have opened the door to a whole host of awful “Late Effects” as they are called.

Dr. Carpenter is such a professional that the meeting was fairly low-key, but inside my mouth was gaping and my heart was racing around doing little giddy twirls.  Thank You Father God!  I could never have imagined such a day.  Oh I hoped for it desperately, but in a way, for a long time, I didn’t even allow myself to look this far down the road. But here we are.

A few days ago I took Allistaire in for her first set of vaccinations.  All those many rounds of shots from infancy were wiped clean gone along with her marrow during transplant.  At this point she can begin getting all of her vaccinations with the exception of those that include live viruses, such as Measles, Mumps and Rubella.  For these, she must wait for one year once she is off all immune suppressants (steroids).  And as a little side note for those who have not or are considering not vaccinating your kids.  There’s a lot to say on the subject, but one point to consider is that there are those like Allistaire who simply cannot be vaccinated.  They are left exposed, without defense, to horrifying diseases that can cripple and kill if contracted.  When every child that can be vaccinated is, it tremendously reduces the likelihood that a sweet girl like Allistaire who cannot be, will ever be exposed to these awful diseases.

As we drove into town to go get those dreaded shots and Allistaire’s eyes welled with terror and tears, I found myself attempting to explain to her why these shots were worth it and why she needed them.  I told her about the strong medicine that killed the blood in her bones so that it would also kill the cancer that lives there.  And then I began telling the tale of how a woman, my own age, on the other side of the planet loved her, even though she has never known Allistaire.  How this woman was willing to endure the pain of shots so that her bone marrow would release those magical stem cells into her peripheral blood and how yet another needle pierced her skin, this time to collect those cells.  An airplane crossed over the North Pole where Santa lives and landed in Seattle.  Then a truck picked up the little white cooler that held the cells and eventually they arrived at Seattle Children’s and I found myself walking down the hallway behind that swift, purposed woman who carried the cooler, all the way to Allistaire’s room.  I was crying as I told Allistaire these details and of the color of cells in that little bag and how they hooked the line to her tubies and the stem cells flowed in.  I am still so humbled that this woman who doesn’t know us, would love us so tangibly.  Perhaps she was able to imagine that there might be someone on the earth that would one day desperately need what she was able to give, and so she determined to join the bone marrow registry in her country.  Thank God for imagination.

It is Friday the 13th.  Quite a good day really.  In five days it will have been one year since that joyous and simultaneously anti-climatic day that someone else’s blood began to flow into Allistaire.  For one year, that European woman’s stem cells have made their home in Allistaire’s bones and have been doing one amazing job at producing red blood and platelets and white blood cells.  Now those white blood cells will get a glimpse of diseases they have never seen (polio, hepatitis, pneumococcal and many others).  And in all the miraculous wonders of our flesh, those white blood cells will fight and win and store the knowledge of their weaponry and victory, to stave off any future attacks of even greater force.  I am ever in awe of all of it – all of it – the intricacies of our body and how it can actually keep us alive despite so much working against it, the generosity of those who have given bag after bag of red blood and platelets and the thousands it takes to make one bag of Immunoglobins, the woman who gave her stem cells, the myriad of doctors and professionals who tirelessly give of their time and brilliance, the phenomenal generosity of those who give to Seattle Children’s and Fred Hutch to make all this medicine and testing and care possible, the blue sky and wind and a sun that rises every day and flowers that somehow come back every spring, for millions of prayers uttered into the expanse – trusting that God will hear and care and answer as He chooses, for a God that looks down from on high and considers each of our hearts, all of our ways, who knows the number of hairs on our heads, and who interjects Himself in the most surprising of ways into our world.

I have SO much to be grateful for – SO much to give thanks for.  So, we’re planting a tree.  I bought a tree for $49 the other day at Cashman’s nursery – a Radiant Crabapple with gorgeous pink blossoms.  We will sink its roots into the Montana earth and water it and protect it from predators (deer and moose) and delight in its beauty and its reminder of all that God has made possible in the past year.  And we’re going camping.  It’s supposed to rain, but we’re going.  God has made way for my hair to smell like campfire and for us all to wake in a small space together, dampened by the moist night air and waking too early from sunlight and bird song.  Gifts incalculable.

Thank You Father.  It doesn’t get any better than this.  I still could never have willingly chosen this path.  I could not have imagined being able to walk through such dark valleys or the joy of rising to such peaks, but God has been faithful to His word – to provide abundantly, to meet me in the darkness, to turn darkness into light and to redeem brokenness.  Yet I ask for more, more God.  I will keep hoping for what I do not yet see.  Father, help me to walk in faith by your side.  You have been SO good to me, and I am expectant.

To read all about Allistaire’s transplant last year on June 18, 2013 and see far more pictures of a year ago than I’ve added below, click HERE.

Thank you to all who have already generously donated to Fred Hutchinson Cancer Research Center by supporting me in Obliteride for the 50-mile ride this August 2014.  You have made it possible for me to reach the minimum fundraising goal!  If you have not yet donated and it brings you delight to imagine how your money, spurred on by your compassionate love, might be used to bring about the end of cancer and the furtherance of wondrous life for people like Allistaire, please consider donating today!  One-hundred percent of all money donated goes directly to Cancer Research at Fred Hutch!  Amazing!

My dear friends Emily, Lysen, and Jo are also riding, so please consider donating in their name – it all goes to the same place but helps them meet their fundraising goals as well.  Just click on their name and it will take you directly to their Obliteride page where you can donate.

IMG_9357 IMG_9367 IMG_9398 IMG_9399 IMG_9401 IMG_9403 IMG_9413 IMG_9432 IMG_9437 IMG_9453 IMG_9455 IMG_9457 IMG_9459 IMG_9466 IMG_9472 IMG_9476 IMG_9477IMG_9486 IMG_9495 IMG_9497 IMG_9503 IMG_9507 IMG_9516 IMG_9519
IMG_2557IMG_2813IMG_2932IMG_2951IMG_2974IMG_3117IMG_3131IMG_3197IMG_3295IMG_3405