Tag Archives: Seattle Cancer Care Alliance

Transplant Day+8, well now +12

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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

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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

 

And So It Begins

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IMG_2272Each night Allistaire crawls to the head of her bead and turns off the flashing “sea urchin,” lights and tears a link from the paper chain.  The chain is still eight links long, but ten have been torn away, time stripping down.  Each morning my alarm goes off in the dark, despite all the mundaneness, the normalcy, I find myself a bit surprised we are still here, still doing this.  I stretch out on a bed that later in the morning will fold into a couch and always marvel at how it is the most comfortable, in this one room out of three in which my life is spread out.  Three bottles of contact cleaner.  Three tubes of toothpaste.  Bags.  I live out of bags.  Bags coming.  Bags going.  And each evening I wash the day’s dishes in the tiny white porcelain sink and am surprised to find another day ending, light gone and moon rising.

Each morning I settle into a quiet spot in Starbucks and drink my double tall, extra-hot, caramel latte and eat my bacon gouda sandwich, looking out the window, gazing but eyes not seeing, wondering, inquiring, inquisitive, curious.  Marveling.  What is this life?  There are so many constraints, bonds, limiting factors, losses, saddnesses, pains that seep out like wounds refusing to heal.  I am walled in, cut off, restrained.  I saw my cross-country skis when I went home, still wrapped new in plastic from a year and a half ago.  My hair shows countless wily grays, rising perpendicular from their counterparts, defiant, declaring their independence, shooting outward at odd angles, more wrinkles gathered around my eyes.  Life proceeds forward with regularity, and we?  We languish.  We circle over and over and over, tight tiny circles, moving between two rooms: Forest Level 7 Room 219 and Ronald McDonald House A Room 362.  Each afternoon we’ve left the hospital on a pass, Allistaire’s little gleeful eyes peeking out over the mask, protecting her from those who might spew viruses into the air.  We move from one room to another room, two small spaces, a figure eight.

For so long we have pushed, straining forward, inertia to get to this point, this first day of transplant, the beginning of conditioning.  “Transplant,” has been the metronome of our days, the ceaseless pound of that one word, the undergirding of all we do, every choice made in orientation to this one goal.  And as the links have fallen away, giddiness has welled, shock and joy that at long last we are coming to the day for which we first came over fourteen months ago.  We are finally about to do what we came to do.  Yet in these last several days, a hush of sadness wafts down like tiny snow flakes, gathering in the cracks.  An odd silence as I take in the lush curve of her cheery cheeks, made more chubby by steroids.  I watch her hands fiddle with a curl, thread back through her blonde hair and I realize how short is the time left with that hair, hair that took a year to grow.  I listen to her happy little voice and watch her eagerness to play, and my heart feels tender from deep bruises.  Oh.  Oh what are we about to do?  What is about to happen to this happy little girl?  As the days have slipped down to two and one, I know that she now, at long last, stands on the threshold of a momentous undertaking.  “TBI (Total Body Irradiation) is like being near the epicenter of a nuclear blast.”  Those words echo quiet, pinging back and forth inside my cranium.  I cannot help but imagine her little naked body, covered in gray ash, devastation and annihilation radiating out around her.  Always Hiroshima with my little one standing at ground zero, knowing I willingly put her there.  “There is a good chance she could die in transplant.”  Late effects.  A broken body, devastated from all the ravaging magnitude of what is to come.

We stand at an open door.

We stand at a door we never thought would open.  With this relapse there was the great fear that she would never get into remission, given that nothing even slowed her cancer before her first transplant.  But remission was achieved and transplant scheduled for March.  Then we watched her heart race at 187 beats a minute as her body agonized to respond to the might of her typhlitus infection.  For two weeks, every other day, she received granulocyte infusions to give her body a means of defense when her own marrow, decimated from chemo, had nothing to offer up.  Fevers and pain meds around the clock, tubes and wires and hoses and monitors.  And at last she came out of that storm and all was peeled away and she appeared herself again, yet now with a heart tattered and weary, heaving, expanding on itself, barely able to exert the force necessary to send oxygen hurtling through all her extremities.  A heart they told us, that would never recover its function.  Round after round of chemo to keep the leukemia at bay, but silently cells continued to infiltrate her flesh, gathering in the open curvatures of her skull, filling and pressing out, gnawing away at bone, forcing her eye up and out.  But what to give her, what will be powerful enough to fight the cancer cells and not also overwhelm her heart that so desperately needs to heal?  Mylotarg.  An anti-CD33 monoclonal antibody drug conjugate, withdrawn by the FDA but made available through Fred Hutch on a compassionate use protocol.  Progress against the cancer but also some sort of infection in the lungs making more chemo dangerous.  Another gift, an attempt at a new therapy, a meticulously designed T-cell sent on a mission to destroy all cells bearing the mark of WT1.  But to no avail, no effect, no ability to slow the onslaught of those cancer cells.  More Mylotarg, more gifts, more open doors.  And behind it all, the compassionate hearts and brilliant minds of doctors sorting through all the details and directing the strategy.  And above and below and hemmed in on all sides, the Lord is at work, closing and opening doors and carefully, meticulously, crafting all the days of these past fourteen months.

We stand at an open door, a door long prayed for, long yearned for, desperate panting, exertion on all levels to open.  And open it He has.  And this morning we walked through.  January 4th, 2016 has come and Allistaire innocently and willingly laid her body down on a little table with a great machine overhead, a machine that would cause a beam of radiation (12 Gy in total) to hurtle through her body, tearing DNA in its path, a mindless destroyer.  She will do this eight times, each time laying on her back and then flipping over onto her stomach.  The first four of eight “fractions,” includes the use of lung blocks, great wedges of a combination of lead and bismuth, to reduce the impact on her lungs; one set for the front and one for the back.  They are carefully set into place on a glass table that sits overtop of her and the doctor checks their placement by X-ray.

Monday through Thursday this week Allistaire will get TBI and then Friday through Sunday she will get the chemotherapy, Fludarabine.  This sums up her “conditioning,” with the intent of myeloablation, a complete destruction of her bone marrow which harbors the source of her cancer and any cancer cells throughout her body.  For Allistaire, Monday is a day of “rest.”  This simply means that there is no treatment that day.  It is a lull.

But really, Monday is a spectacularly significant day.  Monday, January 11th is Sten Karl Anderson’s birthday.  And what gift to give on such a day?  On that day, it will in fact be Sten who is giving the gift.  On January 11th, Sten will sit in a chair for two to three hours with large needles in his veins as his blood is being pulled out, blood replete with stem cells for Allistaire.  On January 7th, Sten will begin five days of GCSF (Granulocyte Colony Stimulating Factor) shots which will prompt his marrow to produce hematopoietic stem cells (HSC) and mobilize them into his bloodstream.  These HSCs are the stem cells that give rise to all the other blood cells in the body.  On the day we celebrate the birth of his dear youngest brother, Jens Hagen Anderson, Sten will begin the process of offering another chance at life to Allistaire.  There is no doubt, these days are a powerful, turbulent combination of joy and sorrow.  We rejoice in Sten’s life beginning and being sustained another year.  We rejoice that he has the uniquely beautiful gift of offering life to Allistaire from his own life, his own blood.  And while we rejoice in the 28 years of life given to Jens and all who have been blessed to know him, we mourn that we no longer have him with us.  Jens will never know 2016.  We mourn that in order to give Allistaire an opportunity to live, we must first bring against her the most powerful weapons medicine has in its arsenal.  We must brutally ravage her body, with the real potential for death, to give her one slim chance to live.

Sometimes, when I let myself go there, when I turn to take the brunt of the sorrows of sickness and death and sin, when I face them head on, when I look them full in the face…I feel such deep agony of pain, a tearing of the sinews, splintering of bones…it is simply too much, I must turn away.  Turn away or drown, turn away or?  How did Christ do it?  How ever did He take on the incomprehensible weight of such brokenness?  Like Moses who could not bear to look full into the holy face of God for fear of death, nor can we look fully into the black.  We cry out, “Why? Why God?  Why don’t you stop this agony?  Why don’t you put all this wretchedness to an end?”  I can tell you this, sickness and death have an incredible power of clarity to reveal how truly broken this world is.  They declare to us that despite all our great intellect and all of our earnest strivings, we are not in control.  This is a double-edged sword, brokenness and finiteness, but isn’t it too gift, gift that this brokenness may end, that it need not be eternal?  Death is a door to the end of brokenness and sin.  Death is a door that, if we kneel to Jesus Christ as God, is the means to eternal life with no more sickness, sin or death.  And you and I might like to scream, with tendons of neck flexed until we go hoarse, “You have done it WRONG!”  We hurl our rage and agony out into the silence, out into a night sky layered thick with stars.  And the stars sing back, not with explanation, not with answers that satisfy, but with a declaration that God is God and He loves us and He has made a way for redemption and for life, and will we bow?

I dwell here, in “the already,” and the “not yet,” a time between times, a time of tension.  I have begun to notice that some of my most favorite songs, songs meant for road trips, for travel, tend to have this interesting quality of two parallel elements of sound.  On the surface, in the forefront, are notes of faster pace, a sort of galloping, running, small, short quicker sounds, building and waning but rising, intensifying, swelling upward.  You feel the tension growing, rising higher and higher.  You long for release, for resolution, for a letting up of the momentum, but at the same time it is tedious, staccato, repetitious.  Below and in parallel, a tandem sound, notes drawn out long, low deep stretched wide, great sweeps of sound undergirding the frenzy above.  I live in the frenzy, in the tedious, in the repetitious, in a tension that builds and longs to be released.  I live in an unresolved state and I ever feel its angst, the thorn that will not be removed.  And yet I listen, I incline my ear to hear that which does not as immediately demand my attention, the sounds that have always been there, the declarations that this life is undergirded.  Sounds of peace, wide broad sweeps across the universe, across time, across this earth and history and ethnicity.  I feel my tension relax as I harken to the sounds that declare redemption has already been accomplished.  Sin and death have already been broken and done away with.  Christ is seated in heaven.  “It is finished,” He cried because ultimately in the cross all has been accomplished, justice and grace.  We finite beings live within the constraints of time, but God is above and beyond and within time.  All has been accomplished.  Only because of this is it well with my soul.DSCN5281IMG_1485 IMG_1491IMG_1354IMG_1346IMG_2559IMG_2560IMG_2817IMG_297111120_10100399384088319_5126860685083336367_nIMG_1066560153_10151311627174094_1955432901_nIMG_3636IMG_3591IMG_0453IMG_0791IMG_1125IMG_1239IMG_1282IMG_1286IMG_1318IMG_179212107786_10153431748189667_4156990417936886173_nIMG_1885IMG_1941IMG_2062IMG_2064IMG_2066IMG_2088IMG_2096IMG_2105
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All I Want for Christmas is a Bone Marrow Transplant

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FullSizeRender-4Winter Solstice is passed.  The darkest night of the year is behind us.  Ever so slowly, at a staggering speed, we make our way back toward the sun.

I can hardly believe the earth has made an almost complete orbit around the sun since that day last January when Allistaire’s immune defenses dropped to zero and typhlitus nearly took her life and ravaged her heart, a heart already made vulnerable by so very many rounds of chemo.  There have been so many very dark days, so many tears, so much uncertainty, so many occasions where all appeared bleak.  And yet…I cannot begin to count the number of barriers overcome, walls knocked down, doors that opened.  I stand back and I survey the road behind us, it both tires me and brings elation, joyous shock, mouth-gaping awe.  The world is just as quiet and just as loud and busy and frantically running around, and I stand, I stand and look around me, and really, I cannot believe we are here.

It  is a grey day.  There is no snow to beautify the land, no hush of quiet, no blue light of early morning snow reflecting the sun’s advance over the horizon.  The earth shows no sign that it knows what has happened, what has transpired in this place.  I look back, back, back over forty-eight months, to a day when I sat in this very seat on a snowy day, back to the day I received Allistaire’s bone marrow results after her first round of chemo.  A zero percent, no identifiable Acute Myeloid Leukemia.  I felt such utter relief.  I could never have imagined how long the road would be before me, of the nearly five hundred days in the hospital that would transpire between then and now and just how sly those cancer cells would be, ever-present, ever ominous, ever intent on dividing endlessly until they foolishly commit suicide by taking the life of their very own body.

I look back, my heart and mind touching back over those points in which I was told, she probably won’t make it, her chances are so very small, in the single digits.  The weightiness of looming dark walls, the snarl of danger ever lurking, threatening to strangle.  We still stand in the dark, there are still looming walls and teeth flashing in the night.  And as I stand in this darkness, where there is so little light to make out the landscape before me, where the way forward is cloaked and unknown…I am smiling.  I want to go up to each person I pass and say, do you know?  Have you heard?  Let me tell you a story, a story of a little girl, little but fierce.  Let me tell you a story of terror, of heartbreak, of hope, of glee, of overcoming, of victory.  For no matter what lies ahead, today is a day of victory.  This day is a day of incalculable gift.

Sten and I sat with Dr. Summers as she went through paper after paper, our Data Review as it’s called.  We looked at the highlighted numbers that tell of the wonders within, of kidney’s and liver, of heart and marrow, of lungs and bones, of cells and antibodies.  Her marrow, so beat down by twenty-three month-long rounds of chemo, no longer produces almost any cells and yet, there is also no sign of her leukemia cells.  Her sinuses still harboring tenacious leukemia cells, many wiped out, but there is a clear remaining presence of this disease.  Her heart is not a normal heart, it gimps along but has made a marvelous recovery from the days ten months ago when it seemed right on the cusp of utter collapse.  In short, it is clear that there is no chance to cure her of her cancer without the most intense myeloblative assault possible, and while her body has incredible vulnerabilities due to all the ways it has been injured and weakened from her treatment, it has a chance to maybe, just maybe weather this storm.

Dr. Summers went through all the steps of the harrowing process before her, and of a plan, a collaboration of the Bone Marrow doctors, the Heart Failure cardiologists and the ICU staff.  This plan might look simple on paper but represents incredible teamwork on the part of these different specialties.   Today is not just a victory for our family, it is something for many people to be proud of, for it has taken the tenacity and compassion, and skill and brilliance of many folk to bring us to this point.  I thank in particular Dr. Marie Bleakley who has for so long been working behind the scenes to make this transplant an option for Allistaire, for Dr. Yuk Law and his wonderful team of cardiologists for constantly reconsidering Allistaire’s heart and how best to support it and build its strength, and for Dr. Todd Cooper along with Dr. Rebecca Gardner and Dr. Jessica Pollard, three incredible oncologists whose ability to straddle the research and clinical care of patients is impressive and have been directly responsible for helping to keep Allistaire’s cancer at bay for so long, enabling time for her heart to heal.  It is simply a gray and rainy day here in Seattle, Washington, the silhouette of evergreens, firs and hemlocks, and the delicate outlines of maples and madronnas, dark against the sky.  It is a quiet afternoon in the hospital, one day before Christmas, nothing to draw attention to how remarkable this day really is.

It has not been hard to call out to the Lord for help.  The words come easy and swiftly, “Help!  Hold onto me!  Hear my cry!  Mercy, mercy!”  But today I feel oddly mute, sitting in this quiet corner of a hallway looking out at a day turning to night.  What words?  What words Lord can I bring before you to say thank you?  I come before you empty-handed.  I sit down at your feet and just shake my head, in wonder, in awe, in delight. Thank you Lord.  Thank you Father, maker of the heavens and the earth and all that they contain.  I can say only, You are beautiful, I stand in awe of you, and I love you Lord, you are dear to me.

There have always been two fights, parallel, interwoven, side by side.  The fight of the flesh and the fight of the spirit.  Today is a moment of victory.  Today the door has been opened to transplant, of one more chance to eradicate the sickness within Allistaire that threatens her life.  Today marks the entrance to many more walls and doors and dangers, but it also marks the only possible way forward, the only hope for Allistaire’s life.  The fight of the spirit has always been that of Abraham, will I yield?  Will I lay all my treasure, all my hopes for life at the feet of the Lord and say, “This life of mine, this life of my child, so bound together, they are Yours.  You are God and all my days are for You to determine.  I yield.”  I enter the throne room of grace only because Christ has gone before me…He has gone before me that I am invited into the presence of the God of the Universe who actually loves me.  I am able to yield because He has so demonstrated His love for me in this, that He sent His only begotten Son, so that whoever believes in Him will not perish but have eternal life!  Perfect love drives out fear.  I can walk forward into the dark without fear, because no matter the days ahead, I know there is light on the horizon.  No matter the dangers, I cannot perish.  And should this transplant take Allistaire’s life instead of restore it, while we will miss her desperately, she will have been made whole and free.  She will live.

It is now Christmas Eve, a Christmas Eve like none I have ever known.  For the first time in my life I did not select a Christmas tree and delight in decorating it with Christmas music playing in the background.  I cannot think of a Christmas Eve that I have ever spent alone.  But for the first time in a very long time, I did not wake up sad.  We have a glimmer of hope.  The door to transplant has been opened.  Allistaire must make it 10 more days without getting sick or having some major issue come up in order to start the transplant process.  Next Monday she will begin the first of five “fractions” of focal radiation to the tumors/chloromas in her sinuses.  She will then have New Year’s Day and the weekend off before officially starting the transplant process on Monday, January 4th with TBI (Total Body Irradiation).  Once you begin the actual transplant process, there is no turning back.

Ten days.  In the scope of things, a short bit of time, but an enormous amount of time in which something could go wrong and this open door can go swinging shut again.  But tonight I go to bed with joy curled up in my heart, joy to have been allowed to walk this far forward and hope for more open doors.  Tomorrow is Christmas.  Tomorrow is the day we celebrate the birth of Jesus Christ.  Tomorrow is the day that changed everything.  The birth of Jesus Christ, Immanuel, God with us, is the basis for our hope that no matter the road before us, there will be beauty and redemption and life.

Brewing Storm

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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

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Batten Down the Hatches

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DSCN4622 DSCN4627 DSCN4629IMG_1920Batten Down the Hatches
:  Nautical Term – To secure a ship’s hatch-tarpaulins, especially when rough weather is expected

From hence forth, Allistaire is in lock-down mode.  I will not allow her to go anywhere other than the hospital and our room at Ron Don.  When she’s in the hospital she’ll be wearing a mask.  The countdown has begun.

Last Friday I received THE call.  The transplant coordinator called me with dates, actual “written on the books” dates for Allistaire’s transplant.  Earlier that morning, Dr. Bleakley relayed to me that the pulmonologist at SCCA who cares for adult patients had reviewed all of Allistaire’s lung CTs and the testing results from her biopsy.  He concluded that she does indeed have Cryptogenic Organizing Pneumonia (COP).  Dr. Madtes felt confident that the testing had conclusively ruled out the possibility of leukemia, fungus and bacteria.  He said that while it is not common to ever have COP and especially rare to have it more than a year post-transplant, he has seen it this far out.  Also, the location of the nodules in her lungs he said are classic for COP.  The treatment for COP is steroids which Allistaire began last Wednesday, December 2nd.  He expects the steroids to be successful in clearing the infection and does not think it should require any delay going into transplant.

Thus we are able to move forward with her transplant.  Next Wednesday, December 16th, she will be officially transferred into the care of Seattle Cancer Care Alliance and will begin a slew of testing that will take place over the course of the following two weeks.  We do not have all the details of her schedule, yet the various tests will include a lot of blood tests, lung CT, PET/CT of her whole body, brain MRI, likely another echocardiogram and EKG, bone marrow aspirate and biopsy, and of course physical exams.  The majority of these tests would be conducted anyway given that she is coming to the end of this round of chemo at the end of the month, but everything will be especially scrutinized in light of her ability to endure a transplant and the state of her disease which impacts the success of the transplant.  All the testing will be wrapped up and conveyed to us in a “Data Review Conference,” on Thursday, December 31st.

While she is cleared to begin this process, this is really a process of final determination if she can have a transplant, it is not at all a guarantee of transplant.  We all think she’s in a good place to move forward, but all this testing will verify that.  This will be a very busy time full of appointments and sedations.  Honestly, there are still a hundred thousand things that could stop us in our tracks.  Last week Allistaire’s creatine level jumped to .9 which indicates the high possibility of kidney damage if you can’t turn it around.  Because of the limitations of her heart, she was admitted to run fluids at a lower rate to help flush out the rising phosphorus, potassium and uric acid that were building up and putting stress on her kidneys.  A day in the hospital helped her labs return to normal but this is just one example of how serious issues can arise out of the blue.  The most immediate concern is her heart as her BNP (measurement of heart distress) was quite high last week at 824 (normal is 0-90).  This lab was drawn the same morning that she had an echocardiogram that showed stable cardiac function and an ejection fraction of 43 and a shortening fraction of 21.  The heart failure team think the high BNP was most likely due to getting fluids the day before, but this was a red flag for the BMT (Bone Marrow Transplant) team.  Unfortunately today, it was still just as high at 830.  I don’t know what’s going on but it sure is concerning.  If it were to continue to trend up, again we could be stopped from moving forward.

Really and truly, there is no guarantee of transplant until the day conditioning starts.  For those unfamiliar with bone marrow transplant, in general the process begins with annihilating the marrow and trying to eradicate the body of cancer cells.  This first part of the process is known as “conditioning.”  Sounds nice huh?  It’s anything but nice.  I’ll give more details another time, but suffice it to say, there is almost nothing more brutal you can do to a body than this full intensity “conditioning.”  Conditioning is scheduled to begin on January 4th, with four days of “boost radiation,” to Allistaire’s sinuses where these awful chloromas/tumors have been in her face.  She will then get the weekend off and have TBI (Total Body Irradiation) twice a day January 11-14th.  Then comes the chemo, Fludarabine, January 15 – 17th.  On the 18th she will have a “day of rest,” and the 19th will be the actual day of transplant when she receives the infusion of donor cells.

The transplant coordinator continued on with giving me dates, dates of approximately how long she’d be in the hospital and how long she’d have to stay in Seattle before she goes home.  I mentally clamped my hands over my ears at this point.  It’s just too much to consider.  I can’t even look at the possibility of going home.  I can only focus on the hope of getting her to transplant.  After so many, many disappointments and cancelled plans and hopes, I rarely look more than a few weeks into the future.  The cardiology scheduler called the other day to set up appointments for January and February and I laughed out loud, a sad, cynical laugh – I cannot even anticipate what this Friday holds, much less a month of two from now.  Allistaire has been talking more and more lately about how excited she is about transplant because it means she can go home after that.  I am totally honest with her and tell her we don’t even know if she’ll be able to get her transplant, whether or not she’ll survive the transplant and even more so whether or not it will work.

The truth is I feel beat down these days.  These holidays are driving me sort of crazy.  I love the delight they bring Allistaire as we decorated her little pink Christmas tree with lights and ornaments and listening to Christmas music.  But everywhere I turn the holidays are just screaming in my face how far from normal our lives are, how far from the life I long for.  Today has been a hard day.  Yesterday evening I talked with my friend whose daughter is here for her one year post-transplant follow-up and her bone marrow test confirmed relapse as they feared.  They are scrambling for options.  I also found out last night that our sweet little AML friend, Ron Don neighbor and fellow Montanan has blasts in her blood and numerous chloromas.  Stevie is only four and has the cutest voice you can imagine.  This is confirmation that this round of chemo did not work.  Like Allistaire, she is trying to get to a second transplant.  I keep imagining how hard this week is for Heather as she and John prepare for Lilly’s memorial service on Saturday.  Allistaire’s high BNP just makes no sense to me and terrifies me that issues with her heart could show up and this whole transplant attempt could come crashing down.  She cannot just keep getting Mylotarg.  This feels like her one last shot.  Everywhere I turn, disaster, desperation, deepest wells of sorrow.

I was listening to a song today that had as its core the verse John 15:13 which says that, “Greater love has no one than this: to lay down one’s life for one’s friends.”  Then Romans 8:16-17 came to mind where it says, “The Spirit himself testifies with our spirit that we are God’s children.  Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”  Why did Christ suffer?  Why did God ever take on the form of a frail, temporal human in the first place?  Was it not all because He loves us?  Because His heart is moved by compassion and He longs to be in relationship with us?  He came in the form of man as Jesus Christ in order that through His suffering, His death, we have a way into eternal life with Him.  His whole life and His death were for the express purpose of being light to the world, to display and demonstrate in action the love and holiness of God, all so that we would see, that our hearts would turn to Him and receive life!

Christ suffered while He was alive and He suffered ultimately on the cross.  He demonstrated ultimate love by laying down His life for those He longed to call friends.  I am not being persecuted for my faith in Christ and yet everywhere I turn, I cry out, “Lord God!  It is all a mess!  It is all ragged and torn and in disarray.  This is NOT THE LIFE I WANTED!!!”  I want to rage at Him.  And then I bend my knee, my face to the ground.  “You are God and I am not.  Your ways are higher than my ways.  You are other!”  Who am I to say what my life should look like?  Is not all my life, all my life to be a reflection of the wildly compassionate heart of God?  Who am I to say how He is best displayed? Nothing in my life resembles the sort of life I thought I would have, the life I envisioned for myself.  There is nothing here to display on Pinterest.  When I survey my life, it hits none of the bullet points I wanted.

But then, then I must get down low, I must crane my neck up scanning the night sky and ask, what really, really do I want out of this life.  Hasn’t it always been about the two commands, to love the Lord my God with all my heart, soul and spirit – with all my strength.  And to love my neighbor as myself.  If this is what I claim my life is about then guess what?  This is exactly a perfect place for my life to be.  Every single day, from the moment I wake up until I finally fall asleep is a constant seeking after the Lord, constant calling out to Him, constant praising Him, constant wrestling with Him.  This is what a broken life for a child of God accomplishes: an abiding, I in Him and He in me.  And He has allowed me to walk into terrifying dark and made Himself known to me there, here, that I in turn might share His comfort with others in this black place.  Because it is so black, so utterly dark, it challenges one’s very core and all that is connected.  I am able to love those in the dark in a way I never could have before entering the darkness myself.  Sometimes the pain of this place is blinding and consumes the view.  Sometimes the pain seems to ring through every last nerve, the tips of your fingers searing with hot sorrow.  I seek to mourn with those who mourn and rejoice with those who rejoice.

Sometimes I scream, scream, scream in the car. Scream so hard my throat is raw.  There are no words for the depth of this tearing.  Father, you have brought me into this land I never sought, a land I have despised, a land that made me cringe and hoped I would never have to know anything about.  It is a barren land, ugly and dangerous.  And yet, in this land I have seen your face, heard your voice; I have begun to taste of what it is to walk with you.  In this land I have been able to offer my hand to those who also travel this bleak road.  The treasures of my life will get me no where with a retirement plan, they will not draw people to me because of my accomplishments, my travels, my career, my beautiful house, my knowledge of politics, world events…My bounty is only in the Lord and to the eyes of this world it looks empty, flimsy, small.  But what if this mess of a life enables me to enter into places to love?  What if this is the way I share in the suffering of Christ who laid down His life for His friends?  How can I say no to that?

As I sit here, ever trapped in Ron Don, a few short weeks before we will know if Allistaire’s life opens forward toward transplant or gets shut down to a remaining few more months, I reflect on the past four years.  Yesterday marked four years exactly from the day Sten and I sat down in a hospital room with Dr. Gardner and Dr. Tarlock to be told that Allistaire had Acute Myeloid Leukemia.  In the midst of incredible sorrow, of feeling utterly overwhelmed, the Lord spoke to me in the quiet – “Be expectant, be on the look out for what I will do.”  Had I known that day what the coming years ahead would hold, I could never have imagined how I would endure.  But He told me that He promises bounty.  I have never taken that to mean a guarantee of Allistaire’s life.  I fix my eyes on Christ – on God who is other, who is eternal.  He may grant us Allistaire’s life and He may not but I put my hope in the fulfillment of His promises to redeem and make new.

The intensity mounts, the ringing tension builds up and up and up.  I long for resolution.  I long for a day that I get to tell Allistaire we can go home, not to die, but to live.  How glorious such a thing would be!  But today we must dwell in this day, this gray flat Friday afternoon with trees bare.  Father see us, have compassion and help us to endure, and not just endure, but to know your bounty, bounty here and now and hope for eternal bounty.

*I now have word that Allistaire is scheduled for her brain MRI next Tuesday, 12/15, and her bone marrow aspirate and biopsy next Friday, 12/18.IMG_1974 IMG_1966 IMG_1965 IMG_1955 IMG_1947 IMG_1941 IMG_1936 IMG_1928 IMG_1924 IMG_1916 IMG_1910 IMG_1909 IMG_1908 IMG_1906 IMG_1903 IMG_1891 IMG_1889 IMG_1885 IMG_1882 IMG_1878 IMG_1877 IMG_1876 IMG_1875 IMG_1874

Mysteries…

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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.

Numbers, Wild Numbers

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1975

2013

2,650,000

6,800,000

8,000,000

So something cool happened.  Forty years ago, in the year 1975, I was born.  I know, sweet, huh?  Just joking.  I mean I’m pretty stoked I was born but what my parents could not have imagined as they gazed down at their newborn baby girl’s little face was that something else significant had just been created.  Little did they know that blue-eyed baby girl cradled in their arms would one day desperately need what also had its beginning in 1975.  In many respects I think it is grace that we do not know the future, that we don’t have to carry burdens in the present of situations yet to come.  At that moment of my birth there was only joy, well my mom would probably say a little pain too.  And yet isn’t it amazing that long before we have a specific need, the provision is often already on its way to being available and ready for us? And so it was that in 1975, Fred Hutchinson Cancer Research Center came to be and would one day dramatically intersect the life of that little baby girl and her baby girl.  Beautiful.  Makes me smile BIG!

In the spring of 2013, there was a blue-eyed feisty three-year old girl named Allistaire.  Turns out she had an aggressive type of leukemia that just wouldn’t back down in the face of every type of chemo thrown at it.  It had come back after lying dormant after standard treatment and this time it was winning, filling her marrow and infiltrating the rest of her body with numerous tumors.  The doors just kept slamming closed.  But then, but then…a door opened.  Allistaire had the amazing opportunity to have her disease filled marrow obliterated and then rescued with an infusion of donor bone marrow stem cells from a woman in Germany.  This was only possible because of a wondrous clinical trial through Fred Hutch.  Had it not been for that trial, for that single open door, there is no doubt Allistaire would be dead in the ground right now.

Time after time Allistaire has been the blessed recipient of the expertise and amazing research through Fred Hutchinson Cancer Research Center.  I will always be indebted to that institution and its many phenomenal doctors and support staff!  It is my joy to commend them to you and to keep seeking to add to their ability to propel research forward and provide more open doors for children and adults alike who find themselves facing that wretched beast Cancer.

And WOW!  WOW!  Look at what we’ve been able to do!!!!!  This year, in August 2015, thanks to your incredible generosity, compassion and support, our Obliteride Team Baldy Tops raised $38,000!  In total over the past three years riding in Obliteride, our team has raised nearly $60,000 for cancer research at Fred Hutch.  This year’s ride raised $2,650,000, totaling $6,800,000 since the inaugural ride in 2013.  One hundred percent of that $6,800,000 goes directly to cancer research at Fred Hutch!  It makes me giddy.  Sometimes one’s efforts feel small.  It’s hard to put yourself out there and ask people to give of resources they could spend on themselves, and instead give it away for the betterment of others.  Then again, you never know when you might find yourself in the desperate position of needing another open door in your own battle against cancer.  When we put our efforts together they can have a BIG impact!!

Would you like to join us?  Our team this year was super fun and included Sarah from Utah – an amazing woman I had never actually met until the morning of Obliteride.  You should have seen her face when she finished her 50 miles – a beaming exuberant smile!  Also on our team were two fantastic nurses, Lysen and Adrienne, from the Cancer Unit at Seattle Children’s where Allistaire receives treatment.  Adrienne and her awesome dad rode on an old tandem bike (and I do mean old).  Carrie, our amazing financial counselor at the hospital joined us as well along with her friend Eric, a local business man who wants to give back.  And of course I had my dear sweet sister-in-law Jo by my side along with my oldest friend, Emily.  Jo’s sister, Annie, also joined us.  Her little baby boy, Marzio and husband, Franky cheered us on.  It is such an amazing experience to be in a swarm of people gathered together for one purpose, each brought to that day by their unique stories.  Obliteride has put together a short little video of this year’s ride to give you a taste of the experience.  You’ll get to see several shots of our team (I have on a blue helmet you see a few times.) Click HERE.

The beauty is you don’t have to be a cyclist to participate in Obliteride.  There are rides from 10 miles to 150 miles, from quick and easy, to covering two days and lots of hard-core hills.  Wherever you are on the cycling spectrum, there’s a place for you to have fun and give directly to cancer research.  Even your kids can get involved with the special kid’s ride.  The 2016 ride is over the weekend of August 12-14th, so mark your calendars to ride with us or be a volunteer.  Registration will open early 2016 and of course I’ll keep you updated!  If you’re interested in being on our team Baldy Tops, please simply leave a comment on this post and I’ll include you in my Obliteride emails.  Wouldn’t it be awesome for our team to reach the $100,000 mark with the 2016 ride?!  I can’t wait!  Here’s another fun video to give your more info on how to get involved in Obliteride.

This year is drawing to a close and you may be considering where to give your remaining 2015 donations.  While it isn’t yet time to fundraise again for Obliteride, you can still give to amazing cancer research at Fred Hutch.  One specific way is to support Dr. Marie Bleakley’s work.  She has been one of Allistaire’s primary bone marrow transplant (BMT) doctors at Fred Hutch for the past several years.  She is the BMT doc who is directing Allistaire’s upcoming (hoped for) transplant.  Like most of Allistaire’s doctors, not only does she do an incredible job clinically caring for patients, but she does amazing research.  One focus of her research is TCRs (T-cell Receptor T-cells).  You will remember that this is the sort of immunotherapy Allistaire received with her WT1 T-cells.  In the HA-1 T-cell immunotherapy that Dr. Bleakley is designing there are specific matching and mismatching requirements of the donor and patient which on one hand limit their applicability to a wide range of patients, on the other hand, they are not limited solely to patients with AML but could benefit patients with a variety of types of ALL (Acute Lymphoid Leukemia) and Lymphoma as well, thus expanding their impact.  Dr. Bleakley says that, “There are actually numerous targets like HA-1 and different targets will work for different patient-donor pairs. We are trying to build a toolbox of TCRs so that we can ‘type’ the patient and donor and figure out which TCR will work for them.”  This is personalized, targeted, sophisticated beautiful cancer treatment.

Dr. Bleakley has already been awarded a Bio Therapeutic Impact Grant of $682,000 from Alex’s Lemonade Stand (ALS) whose vast majority of funding goes directly to pediatric cancer research. I am told that 85 cents of every dollar donated goes to program and research grants with the vast majority of that going to the research end. Their program grants go to family’s to provide one lifetime grant of about $1,400 which we ourselves received two years ago in the form of plane tickets home for Allistaire and I.  Dr. Bleakley is able through Alex’s Lemonade Stand to raise up to an additional $25,000 in donations through the end of 2015. For every dollar up to $25,000, ALS will match one to one. So in total she could raise $50,000 additional to go toward her research.

This is an incredible opportunity to fast-track her research in the lab to actual patients.  The next step for her research is to take what they have been doing in the lab and bring it to a GMP (Good Manufacturing Process) lab. This independent lab would, with the aid of her research assistants, recreate their work in order to determine the safety and quality of the product they say they are producing. She said it’s like a dress rehearsal for the real process in which they would prepare the cell product for the patient. The information is taken and included in an IND (Investigational New Drug) Application for the FDA to approve. Once approved, they can then move forward to offering an actual clinical trial to patients. Basically they are at the point of taking their research in the laboratory and offering it as treatment to patients – that means an open door for patients with leukemia and lymphoma!  An open door!  You could help open that door.  To learn more about her research click HERE.  To donate and have your dollars matched one to one up to the goal of $25,000, click HERE.

You know what…At last count, Allistaire’s cancer treatment has cost just shy of 8 million dollars.  That’s more money than all riders have raised in total over the three years of Obliteride.  That is a crazy, mind-blowing number!  My jaw drops every time I think of that number.  Wouldn’t it be WAY COOLER if we could invest in research upfront that would reduce the cost of treatment, reduce the suffering, reduce the incredible investment of time of Allistaire’s life and our family’s lives fighting this fight?  When we put money upfront to accelerate research, we open more doors!  What if we didn’t have to rely on chemotherapy that isn’t targeted and takes down hearts and lungs and kidneys and livers and ovaries with the cancer cells.  What if there was a way to deliver radiation so that it only killed tumors and not brains.  What if surgeons could “see” exactly where tumor cells stopped and healthy cells started, getting all the cancer and sparing the rest? Wouldn’t it just be mind blowiningly awesome to use the incredibly complex, beautiful immune system you already have in your body to effectively and totally wipe out every last cancer cell so that “relapse,” is word never again uttered!  When we put our money and effort into research, it isn’t just one patient that is benefited.  Who can know how many people will be blessed by each step forward in cancer research.  And this is a world-wide endeavor!  Do you know that amazing minds are at work all over this earth trying to untangle the mysteries of cancer?!  Israel, Germany, China, Italy…What is learned here carries value across the world and their efforts likewise bless us!  Do you know that Fred Hutch has a cancer treatment clinic in Uganda?

As I have said many times, there are many worthy places to give of your time and money, many struggles on this earth that deserve and need our attention.  It just so happens that cancer came barreling into my life and so it does for many, many of us.  Cancer will touch us all, if not directly in our flesh, then most certainly in that of someone dear to us.  One in three women will get cancer in their lifetimes as will one in two men.  Thank you for the great swelling of your compassionate hearts that listened and responded in generosity and love.  May you find many open doors!!!

As for our little bright love, Allistaire Kieron Anderson, well, she thrives, she runs, she hops, she laughs silly little giddy laughs and she told me today that the numbness in her face is finally gone.  She looks incredibly good.  Only every now and then can I detect that her right eye is slightly off.  Yesterday she had a bone marrow test and today she had her PET/CT.  We should know results soon.  Hopefully the general trajectory going forward is one more round of chemo which will include Decitabine and Mylotarg again, though likely only one or two doses of Mylotarg this time instead of three.  Then, God willing, she will have her transplant.

We’ve been at this point before.  I am no fool to believe the road ahead is necessarily clear of barricades.  It as though she walks through a field replete with land mines. To get across to the other side will take a miracle, so fraught with danger is the road ahead.  Even yesterday, she had an echocardiogram which reported out an Ejection Fraction of 34 versus 45 last time.  I don’t know how the BMT doctors will interpret this.  The cardiologists say her heart function looks the same as it has on the last two echos despite variance in the numbers.  Thankfully her cardiac MRI showed no scarring and affirmed great improvement in her heart.  Going forward with chemo always opens the door to infections.  Two and a half weeks ago she went inpatient due to an infection and the next day she had a separate issue with an extreme rise in her liver function numbers we finally concluded was due to her anti-fungal, posaconazole.  Her ALT and AST were 1,156 and 1,450 respectively, the normal high being 40.  It has been imperative to get these numbers down and get her liver happy again as Mylotarg’s one direct toxicity can be to the liver both in the setting of when it’s given and in transplant.  Just getting to transplant is an incredible undertaking, then there’s the transplant process itself which holds many extreme dangers.  If you get past all of that, you still have to contend with the possibility of GVHD and relapse.  Thank you Lord that you have used these past four years to help me learn more and more how to walk day by day.

To learn more about the fascinating history and endeavors of Fred Hutchinson Cancer Research Center, click HERE

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Traction

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IMG_1475IMG_1286(Top pic: Allistaire 14 days after the first of three doses of Mylotarg; Bottom Pic: The day before the first dose of Mylotarg)

In late August of this year, eleven native Christian missionaries near the town of Aleppo, Syria were killed for their refusal to deny Christ and return to Islam.  Three were crucified and eight were beheaded after the women were publicly raped.  According to villagers who witnessed this, one woman reportedly “looked up and seemed to be almost smiling as she said, ‘Jesus!”

Perhaps you don’t believe this report.  I immediately thought of Stephen who stood up for what he believed, that Jesus Christ was the prophet God had promised to His people Israel and to Moses.  In the face of his life being threatened, he refused to back down.

Acts 7:54-59:  “When the members of the Sanhedrin heard this, they were furious and gnashed their teeth at him. But Stephen, full of the Holy Spirit, looked up to heaven and saw the glory of God, and Jesus standing at the right hand of God. “Look,” he said, “I see heaven open and the Son of Man standing at the right hand of God.” At this they covered their ears and, yelling at the top of their voices, they all rushed at him, dragged him out of the city and began to stone him. Meanwhile, the witnesses laid their coats at the feet of a young man named Saul.  While they were stoning him, Stephen prayed, “Lord Jesus, receive my spirit.”  Then he fell on his knees and cried out, “Lord, do not hold this sin against them.” When he had said this, he fell asleep.”

When I went to wake her, a stream of blackish blood had dried across her cheek as she slept.  Sometimes I would hold up my hand to block the right side of her face from my view, so that I could only see her left, so I could see the girl I recognized, my sweet Allistaire.  She would just cry and cry holding her little hand up to her right cheek.  She couldn’t close her jaw on that side, her teeth wouldn’t fit together, making eating difficult and painful.  Her eye was so bulged out and full of trapped fluid that I could barely see her iris.  I gave her as much oxycodone as the doctor allowed and let her sleep except for brief periods of eating.  I sat on the bed in the dark, only the glow of the computer screen visible.

Outside the world was bursting with life on beautiful fall days.  We were trapped in ever-deepening darkness.

At some point in the span of these brutal days, it suddenly occurred to me, the thought seemingly out of the blue…I am not afraid.  I am not afraid of Allistaire dying.  I am not afraid of the many awful ways situations in my life may turn out.  The realization shocked me but as the words formed in my mind, my deeper self affirmed, fear no longer has me caught by the throat.  I am released.  I have been freed from its strangling grip.

When I read about the woman, already raped, about to be beheaded, the woman who seemed to smile as she said, “Jesus!”…I nodded my head, yes, yes I can see how such a thing could be true.

People say to me all the time – ALL the time – I don’t know how you do this.  Behind such an astonished statement is the desperate hope that we will never be forced to endure such realities.  We look at our weak small selves and proclaim – I could NEVER do that!  Because we don’t want to, because we have created some sort of system in our mind, some law of the universe we desperately hope is true, that if I can’t endure something, I won’t have to right?  But the truth is – the world IS full of suffering and human beings have had to endure terrors far beyond their little girl having cancer and having to watch a tumor gnaw away her face.  We are resilient beings.  You do what you have to do.  We are overcomers and we crave such stories, it is core to our humanity.

With tenacity, with grit, with determination, with perseverance, perhaps with sheer rage, I can make it through this.  I can make it through, if even the worst comes to Allistaire.  But.  This is human effort.  This is what my flesh can muster up.

The paradox, the absolute resplendent beauty and otherness of God says, “No.  No Jai.  I will use these circumstances with Allistaire to tear you limb from limb.  I will allow you to be decimated.  I will crush you so that you gasp for breath.  I will gouge at your heart.  You will know anguish and darkness.  Panic and terror.  And at long last when I have laid you to waste your faint heart will groan and I will incline My ear to you.  And beyond all comprehension you will come to know a strength you could not have imagined.  You will know a peace that surpasses understanding.  You will drink of Me and not grow faint.  You will soar on wings like eagles.”  These used to be just pretty words.  Words I believed, but pretty little words you pat on the head and paint in some scrolly font and frame on the bathroom wall.

How many times have I in desperation, with tears said to Allistaire’s various doctors, “but I don’t know how to let her go.  I don’t know how to take her home to die.”  As I sat in the darkened room on the very grimmest of any days in this long fight, I felt rest.  I am not afraid.  Oh, I am radically sad, to my very core, but fear no longer saturates, suffocates.  It comes to this, at long last I believe the Lord will actually provide all that I need in the moment – not only to endure but to experience Him turning darkness into light, not because He changes my circumstances, not because He ends my sorrow, but because finally I have tasted of Emmanuel – the truth of “God with me” has sunk yet deeper into my very marrow.  I once read a book as a teenager, Abide In Christ, by Andrew Murray.  I abide in Christ as Christ abides in me.  Sounds so simple yet mystery.  I have come to believe – believe – how small a word, how utterly insufficient – nevertheless, I have come to believe that whatever my need, the Lord will meet me in that moment, in that circumstance, and supply in abundance.

Could I endure being publicly raped?  Could I say yes to Christ knowing if I denied Him they would stop torturing my child?  Could I bow to the blade that would soon decapitate and find joy in that very moment?  Can I know peace and even joy in the midst of incomprehensible sorrow should Allistaire draw her last breath?  I do not claim to know how the grace will come but I trust that God will be faithful to meet me fully in each moment and supply all I need to keep seeking His face – that even in the very darkest days He can make my face radiant.

It was odd to sense such peace in face of the thought of Allistaire’s death on the very threshold of the coming chemo we hoped would turn things around.  In the very span of days that the Lord seemed to remove the last stranglehold of fearing her death, there was hope that there might still be some way through.  The peace was unrelated to the hope of chemo working.  The peace lay coupled with death, yet, like burrowing through dark soil and rock, while you hope one day to come out into the light , you count as victory any forward motion.

It has been 22 days since Allistaire began chemo for this round and 16 days since her first dose of Mylotarg.  Night and day.  You can now hardly tell there is anything off with her eye.  You have to be looking for it to see it.  The bleeding has stopped, her sinuses no longer run, her cheek and eye seem normal in size, her double vision is gone, the pain is completely gone.  All that remains is numbness on the side of her nose and upper lip and an occasional expression with her eye that is not completely normal.  She is happy and full of joy and giddiness.  You would not know she had cancer unless you knew she had cancer.

Today I stood in front of two large computer screens with the radiologist, who took considerable time to explain the images and measurements from yesterday’s brain MRI.  The actual dimensions of both “granulocytic sarcomas,” or chloromas or tumors, have diminished only somewhat.  The larger tumor on the right is at its widest still just over 4cm.  The most impressive impact of the chemo is not best understood by measurements in centimeters but the images – wow – the vast majority of the inside of the tumor shows up black on the image – dead cells.  There is really only a “thin residual enhancing rim of the cellular tumor.”  This is most dramatically seen on the tumor on her right side in the “maxillary sinus,” where it no longer pushes up on the orbit/eye and no longer pushes in on her sinuses.  The radiologist informally said it looks like about 80% of the bulk is gone.  I won’t lie, it was pretty disturbing seeing the images from the September 29th MRI.  Every last bit of space was full of leukemia and it clearly had nowhere to go except into her bones.  Thank you God.  Thank you Mylotarg.

Speaking of Mylotarg, Allistaire and I, along with Solveig who we joyfully had with us over her fall break, had the honor and joy of meeting Dr. Irwin Bernstein.  He is both a lead researcher at Fred Hutchinson Cancer Research Center and Chief of the Division of Hematology/Oncology and Bone Marrow Transplant at Seattle Children’s Hospital.  This is THE guy who invented Mylotarg – okay, it was his lab that created this monoclonal antibody drug conjugate that targets CD33 and then unleashes the cytotoxic power of calicheamicin on leukemia cells!  It was just so incredible getting to sit down with him – this man who for decades has worked on cancer research and whose perseverance, brilliance and team work intersected our lives to literally save Allistaire!  I attempted to fully overwhelm him with my gratitude that he and the other folks in his lab would be spurred on!  Hopefully seeing Allistaire’s sweet face and a gruesome picture of her face pre-Mylotarg gave him encouragement that what he does has real, tangible impact!  Ever wonder why I am such a promoter of Fred Hutch?  This is just one example of why.  So much of what benefits Allistaire as she is treated at Seattle Children’s comes from the incredible science being done at Fred Hutch!

The other thrilling development is that last week I met with Dr. Cooper, Allistaire’s primary oncologist, Dr. Law, her cardiologist and head of the heart failure and transplant team and Dr. Bleakley, our primary bone marrow transplant doctor.  Also present in support were Jeff and Karen on the PAC (Pediatric Advanced Care) team and our social worker, Megan.  While I will hold off in explaining the details, in short, the outcome of the meeting was an agreement to aim toward getting Allistaire to transplant as fast as possible.  With Allistaire’s ejection fraction on her last echo being 45, she has finally reached the threshold for transplant.  There is a lot more to say on this subject but for now, the point is, we are now in a position with Allistaire’s cardiac function to consider transplant!  I can hardly believe she has made it this far.  Dr. Bleakley proposed a very interesting transplant option that I initially wanted to spit right out of my mouth in rejection – however, after more information and consideration, it seems it may be an incredible option for Allistaire.  A number of tests are underway to  determine our options moving forward.  The most immediate question is what chemo(s) to give Allistaire in the coming, and hopefully last, round of chemo before transplant.  While Mylotarg has been extremely successful for Allistaire (at least based on the brain MRI – we still have to see what’s in her marrow in the upcoming biopsy) it has in the past, when given in one large dose, been associated with VOD (Veno Occlusive Disease) during transplant.  Dr. Cooper is exploring chemo options available for Allistaire.

A month ago, two months ago, I just felt flat tired, worn down utterly.  Allistaire’s great response to Mylotarg along with the possibility of a bone marrow transplant in the relatively near future has created traction and, man, just gives you something to aim for instead of feeling like you’re stuck in an never-ending circle.  This week marks one full year since this most recent relapse.  We have lived in this wee hotel-like room at Ron Don for one year.  Had you told me on October 24th 2014, that I would still be living away from home a whole year later, without having even gotten to transplant yet – well, I could never have imagined how I would get through all that has transpired.  The Lord knows what is to come.  Hem me in Lord, behind and before.

We just have so much to be thankful for.  Thank you to the mom and daughter who gave Allistaire the obnoxiously large Frozen balloon and the purple hippo – just because – because you cared though you never met her.  Thank you to Dr. Nixon, the radiologist, who took the time to answer my myriad of questions, thank you to the person who gave me that Trader Joe’s card so I could buy lunch and dinner and dried strawberries that Allistaire likes after her yucky medicines.  Thank you to the unknown person who sent me that Kari Jobe CD – I hit “4” over and over and sing out loud in my car, “I lift my eyes, I lift my eyes.  Maker of the heavens.  Keeper of my heart!!!!”  Thank you to my parents who just keep helping to take care of Allistaire and showing me so much love.  Thank you dear friends who have provided us with airline credit and tickets so Allistaire and I can go home and Solveig can be here with us and Sten can fly out to see us and miss less work than if he drove.  Thank you to my in-laws who help us so much with Solveig.  Thank you to my sweet husband who works hard at his job and keeps things up so well at home – including my ridiculous plant collection, far too populated with ferns.  Thank you to so many of you who have given financially to cancer research.  Thank you, thank you for so many of you who have fallen on your knees before our Lord, who have wept on our behalf.

“Do not look at what you do not have, at what will be loss, rather, be expectant, be on the look out for what I will do, for the bounty I will bring,” the Lord softly declared to me on that gray December morning in 2011.  Oh Father.  You have been faithful, so faithful.  You have become more dear to me than I could have imagined.  You have ravaged me and shocked me at your ways.  Your words have taken on flesh and color where once they were just dry bones.  You, Oh Lord, have been good to me.  How I love you.  I prayed to you on so many first stars in the night sky, “Father, should one day something happen in my life that threatens to cause me to deny you, to leave you, hold me close, do not let me go.”  You have heard my cry.  IMG_1289 IMG_1292 IMG_1294 IMG_1296 IMG_1300 IMG_1312 IMG_1318 IMG_1319 IMG_1322 IMG_1324 IMG_1330 IMG_1356 IMG_1366 IMG_1371 IMG_1377 IMG_1392 IMG_1411 IMG_1432 IMG_1434 IMG_1436 IMG_1442 IMG_1450IMG_1477IMG_1488IMG_1493IMG_1505

Post T-cells

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IMG_1107I wonder how many times a day I see a bald head, a sweet face with that pale yellow tube leaving the nose, taped across a cheek.

September is Childhood Cancer Awareness Month.  My Facebook feed is literally packed full with pictures of kids with cancer.  Some with bald heads and sporadic hairs, tiny emaciated bodies, dark circles under their eyes.  So many dead kids.  Accounts of brutal treatments, how many rounds of chemo, of radiation, of antibodies, surgeries.  This is when we pull out all the stops.  This is when you drag out those dark pictures, the ones without the smiles, the ones you can hardly bear to look at.  These are the silent screams that declare, “DON’T LOOK AWAY.” Many of these faces I know.  Others are friends of friends, scattered across the country.  Of course there are also the pictures of happy, bright faces, eyes that shine.  These are the pictures that hope you realize these are just ordinary kids, they could be your own.  These are the lives that we are fighting for.

The last week and a half has been incredibly busy and at times brutally stressful and hard.  Even now I feel the tension that lately never seems to leave my neck and shoulders, clamped down like a vice, a viper with its fangs gripping the back of my neck.  I know, I know.  I must seem mellow dramatic.  But do you know what it’s like to see your friend’s kid with the leukemia literally pushing its way into their mouth, sweet lips that can’t even close over the intrusion.  This is the same sweet child that only months ago joyfully walked the hallways of the cancer unit with little shoes that squeak with each step.  These two girls fight the same beast, Acute Myeloid Leukemia. Allistaire’s eye is looking off again.  Something doesn’t seem right.  I fear these T-cells haven’t stopped the onslaught.  She rubbed her jaw today, saying it hurt.  She didn’t cry.  Within 15 minutes she hadn’t complained about it again.  But pain in her jaw, so close to her eye where we know there’s cancer…I am surrounded by cancer, drowning in it.

I wrote the above on September 11th, eleven days ago.  I could taste cancer on my tongue, some sort of acrid saliva.  The very cytoplasm of my cells seemed to swell with the dominating presence of cancer.  I wanted to scream and run, with fury, with rage, with terror, with ragged exhaustion, with desperation to flee, to at long last burst through that glass wall that isolates and corals us off from the life for which we so long.

For nearly two weeks Allistaire seemed to be growing literally more and more crazy.  Without exaggeration, I thought she was headed for some sort of psychic break, dragging me along right behind her.  Some sort of terror, fear was building in her, mounting to some peak or perhaps plunging to dark depths.  She would repeat to herself, “I’m afraid, I’m afraid, I’m afraid.”  Afraid of what?  “Afraid of throwing up, afraid of I don’t know.”  Meds, which she must take three times everyday, 24 doses in all, became an epic battle sometimes taking an hour, sometimes resulting in her throwing up and having to do it all over again.  She was completely irrational and nothing I could say seemed to get through her crazed state.  The intensity mounted.  Everything depends on her getting those meds in.  Her tummy pain was increasing.  She ate less and began to lose weight.  A feeding tube loomed. “It either goes in your mouth or up your nose,” I tell her.  I felt like I was failing on the two tasks most directly entrusted to me: getting her to eat and to take her meds. Our days felt frenzied. When my eyes opened to meet the day I would feel dread smothering, knowing it was only a short while before it would be time for her to eat and take meds again.

I was frantic for help. Karen, our PAC (Pediatric Advanced Care) Team person provided a referral for Allistaire to see the child psychologist. For the first time in my life and certainly in Allistaire’s treatment, I realized her little mind might really benefit from meds to help her calm down. I only hoped I could make it through the week until we saw her. We also had a GI (gastrointestinal) consult to try to sort out the tummy pain she’s been experiencing. It’s hard to know how much of the pain is anticipatory and in her mind and how much is real. After her incredibly severe typhlitus infection and the more recent ileus, it would be really great to know what’s going on inside and if there’s anything that can be done to help. But prior to these appointments, she would see cardiology for yet another echocardiogram and EKG.

On Tuesday morning, 9/8, I brought my bright green sticky note to Allistaire’s lab draw. “Digoxin,” was scrawled across in black ink. When Allistaire was inpatient for her ileus, a Digoxin level had been drawn with labs one day and showed that since she wasn’t taking her meds with food, it wasn’t being as well metabolized and so her dose was increased along with several other meds. Once her ileus resolved most meds returned to their pre-ileus dosages. Soon after she was discharged from the hospital, I called to ask the cardiologists about her Digoxin dose and to see if we needed to test her level again as they hadn’t adjusted it. I was told then that it was fine for now and would be retested in 2-3 weeks. I asked the nurse drawing labs Tuesday morning and was told it hadn’t been included on that day’s lab orders but could be added up to 8 hours later. Next I whipped out my green sticky note for the cardiology nurse and she said that Dr. Hong had mentioned wanting to get a level.

So it turns out Allistaire’s Digoxin level was 5. The goal range is .5 to .8 with 1 being fine and anything over 2 being bad news. Digoxin originates from Foxglove and in high doses can be very toxic. Her Digoxin was immediately held in order to get the level down.  It wasn’t until about a week later that I thought to look up side-effects of Digoxin toxicity.  Though these are listed as “less common”, I’m guessing having a level that is 5 to 10 times higher than desired might amp up these effects.  “Agitation or combativeness, anxiety, confusion, depression, diarrhea, expressed fear of impending death, vomiting, loss of appetite, weight loss, low platelet count.”  These are just the ones listed that seem to directly relate to what Allistaire was experiencing.  In addition, her Pozaconazole level, an anti-fungal, was about 4,000 when the goal level is 700.  Some “more common” side effects of pozaconazole are, “abdominal or stomach pain, body aches or pain, confusion, diarrhea, nausea or vomiting.”  Other less common effects include “anxiety, change in mental status, mental depression.”  Again, I have only listed those side effects which I specifically saw Allistaire exhibit.  I only thought to look up side effects later because of the dramatic improvement she made once her Digoxin was stopped to get the level down and the pozaconazole was nearly cut in half.  There was a night and day difference.  The girl who fought me for an hour on meds can now take them in 3 minutes.  She is not afraid anymore.  I did switch to lactose free milk at the same time her pozaconazole dose was decreased, but either way, her stomach pain has reduced to nearly nothing.  She has been doing a much better job eating and has actually gained back  some of the weight she lost.

Her other big cardiac med change was the exciting switch from Enalapril to Entresto. Entresto is a drug newly fast-track approved by the FDA this July for heart failure. In a massive, well-conducted trial, Entresto was compared to Enalapril, the leading heart-failure med, and shown to have significantly greater impact. The heart-failure team first told me about it way back in February or March. I asked Dr. Law about it in August and he said that it had just been approved but it has never been studied in children and he wasn’t sure the hospital would approve him prescribing it, if even it was available. The man, who is typically quite mild-mannered, was visibly excited about it. So Allistaire began her first low doses of Entresto a week and a half ago. Assuming her blood pressure doesn’t bottom out, they can continue to increase her dose until it reaches the optimal level. This is exciting given our utter dependence on her heart improving for any hope of curative cancer treatment.

While the calculation of her ejection fraction on this latest echocardiogram was less (previously 41 and now 37), Dr. Hong said the function of the left ventricle squeeze looks the same and there was actually significant improvement in the dilation of her heart. Her left ventricle went from 4.7 cm to 4.2. A year ago before all of this, it was 3.9cm. A dilated heart indicates a heart working too hard and quite ineffectively. When I think back over the last 9 months, I am overwhelmed at how rough the road has been, but the truth is, it has been vastly better than it could have been. I will never forget the sensation of my legs falling away beneath me as I read that horrifying echo report in March where her ejection fraction was 11. I will never forget the solemn nods of affirmation in our subsequent care conference when I said, “So in summary, none of you think she’s going to make it.” The cardiologist said there was pretty much no way she could recover her heart function. A weak heart cannot begin to endure all that is necessary to beat AML between hard-core chemo, intense infections and simply unbearable pain in transplant that necessitates everything going into the body be given by IV. And yet here we are, here we are. With tears immediate, I smiled a great heaving smile with cheeks pressing up against my eyes when the cardiology nurse, Jen, told me Allistaire’s BNP was 51. FIFTY-ONE!!!!!!!!! This was the very first time Allistaire’s BNP, a measurement of heart distress, had ever been in the normal range of 0-90. On the day of that wretched, heart stopping care conference in March, her BNP dropped from the astronomical height of “greater than 5,000,” for the very first time in weeks. Gosh this has been a crazy-making, exhausting, brutal road but I laugh out loud with joy for the number of times we have been told that Allistaire just won’t make it and then she just keeps going. Maybe she won’t. But she has overcome what has been described as insurmountable obstacles.

How many times have I called out to You for mercy Lord? Mercy. Mercy. And He has, over and over and over. Thank You Father for all the days you have sustained us!

Wednesday the 9th arrived and we got to meet Joanne, the psychologist. I left feeling encouraged that there might really be some tangible ways to help Allistaire learn coping skills and overcome her fears. That day we also met with Taryn, her new hospital school teacher, who schedule allowing, will meet one-on-one with Allistaire for an hour on Wednesday and Friday afternoons. I won’t lie, I find myself zooming past the endless Facebook posts with “first day of school,” pictures. All those smiling faces with cute outfits by the front door with chalkboard signs declaring the next grade, sobs choke my throat and I try to turn away. This is Solveig’s fourth year of school in a row of which I will miss significant chunks. I missed her first day of 2nd and 4th grade. And Allistaire, her first day of preschool last year was nothing like I had hoped or imagined. She cried with no way to be comforted for hours. It was her arm. Her right arm up near her shoulder where a month and a half later we would see evidence of leukemia eroding the bone. Of course she was crying. Her cancer was literally eating away at her flesh. This is not what I thought my daughters’ elementary years would look like. It grieves my heart. I turn away from my visions of what I think “should have been,” and focus on what is our reality. This is the land the Lord has given me.

Wednesday morning also brought a significant turn of events. In my heart, back in the corner, in a place unwilling to stand out in full exposure of light was a secret hope stowed safely away. I wanted to bring Allistaire home. What I really desperately wanted was two weeks at home with all four of us. The problem was that Allistaire had a clinic appointment at SCCA on Tuesday, 9/15 with a lab draw for the T-cell research study. So the night of the 15th would be the earliest we could head home. Bordering the other end of a trip was the necessity to re-stage Allistaire’s disease. Dr. Cooper had recommended doing another bone marrow, brain MRI and PET/CT three to four weeks after the T-cell infusion. Given the changes I had been seeing in Allistaire’s right eye, Sten and I did not feel in good conscience we could delay even a week which would on one hand give us an additional week at home and on the other given that blasted cancer one more unfettered week. This meant we’d have to be back in Seattle by the 21st. But that morning I received a wonderful call back from the research study nurse who said there was no reason that Allistaire couldn’t be seen in Bozeman and have the research lab drawn there and simply Fed-Exed back to Seattle. There was a moment of elation and then it was game on. To get Allistaire out of Seattle required an extraordinary amount of coordination and details especially now that her care was being coordinated between Seattle Cancer Care Alliance, Seattle Children’s Oncology, cardiology and our beloved pediatrician, Dr. Angie Ostrowski, in Bozeman. This meant making sure I had sufficient quantities of all her meds, dressing and line care supplies, and clear orders on how to deal with fevers, infections, fluids, blood pressures, labs, transfusions and clinic visits. Thursday she got tanked up on platelets and on Friday we spent the first half of the day at the hospital while she got red blood before we headed off to the airport. Allistaire was literally beside herself with joy. She could not stop squealing. She would shake her head in awe and stutter to get out the words, “ I can’t, I, I, I can’t believe it! We’re, we’re going home!”

On Friday night, September 11th, fourteen years after the Twin Towers fell and changed America forever and five months after my sweet brother-in-law, Jens, died and changed our family forever, Allistaire and I boarded a plane bound for Bozeman.  She skipped.  She hopped.  She laughed.  She squealed.  Her eyes were bright bright bright.  She was excited about everything!!!  At long last the time came when we walked through the security doors in Bozeman and into the arms of Sten and Solveig.  I cried with joy, with sorrow weakening my legs.

We didn’t do really much of anything exciting.  We just spent the next eleven days together.  Chocolate chip pancakes at the kitchen counter and the girls running around the house, laughing and coming up with strange horsey games.  Emptying the dishwasher and waking to the sight of tall evergreens and swaying grasses outside of my bedroom window, knowing Sten lay next to me in the night, wind chimes in the breeze and a shocking array of stars and thick gauze of Milky Way, morning stars and elk bugling, watching a massive rain storm heading east over the valley, engulfing hills in gray mist, waiting for the tell-tale stirring of leaves and fir needles as the wind approaches, light slipping away and at long last feeling cool rain drops on my face.  Extravagant.  Luxurious.  The girls playing on the driveway in the bright sun of a windy fall day, attempting to fly the dragon kite and eventually asking to walk up to Grandma and Grandpa’s.  I tugged at weeds and pruned raggedy bushes, defied the bur weeds and stood with all my body weight on the shovel to remove ugly shrubs.  My arms thrilled at the fatigue of pushing the wheelbarrow up the hill over and over again to the burn pile.  Hawks circled and screamed in the wondrous blue above.  Chipmunks with elegant little black stripes flitted about the yard.  Aspen leaves shuddered in the wind, flashing green and yellow.  Familiar faces, missed, loved, at Solveig’s school fun run where she proudly protected her little sister.  Solveig.  Oh Solveig, giggly girl with gorgeous gray-blue eyes, flecks of green and brown, ever rosy cheeks.  Tucking her in for bed each night with a blow-kiss to end the day.  In town, sweet friends at the school, at the soccer field, everywhere faces that love us, miss us, pray and cheer us on.  Cheering on Pam as she ran her first marathon to help fund childhood cancer research.  Running a short stretch with her toward the end – marveling at how the crossing of brutal paths has brought about this flourishing treasure of friendship – proud watching my friend persevere, propelled to push through the pain because of those 26 kids’ names neatly written out on the card pinned to her shirt.  Allistaire laughed and laughed as she stood in the lake at Hyalite, ripples shimmering out around her in endless rings.  “Is this better than Ron Don?” I asked.  Smiles too big for her face as the fire light wavered orange, reflecting in her eyes and instruction on how best to roast a marshmallow.  “Is this better than Ron Don?” I asked again.  “Everything’s better than Seattle,” she declared with satisfaction.

Everyday I flushed her lines, took her blood pressure and temperature and gave her meds, encouraged her eating.  But cancer, other than that wonky eye, sat in the back drop, it’s yell not so dominating over the hush of grass in the wind, of blue expanse of sky, of sleek brown horses flicking their tails, of rain storms and deer in the evening, of creeks tumbling over rocks and two sisters laughing, laughing, Sten and I smiling.  I see that eye, that right eyeball that bulges just a bit, too much white showing under the pupil.  I see it.  It demands my attention, fairly screaming its urgency.  But I tell it, “shush.”  Be still.  Be still.  What will be will be.  We’ve faced terrifying prospects many times before and yet she runs and laughs and bursts her bright being into the world.  She may yet be given open doors, she may yet thrive.  And if not…if not?  Well, love her all the more Jai.  Love her fiercely.  Let go the insignificant things.  Cherish.  Savor.  Focus in.  See the beauty and life bursting right before me.  Listen to the sweet lilt in her voice, watch her mind try to sort out how things work in the world, delight in her childish perspective.  Sit and watch.  Observe.  Take it in.  Swell with the incalculable delight of now.  We are guaranteed so little in this life.  We have insatiable desires, ever grasping for more, for better.  But pause.  Pause.  What here?  What bounty have I swept past, swept aside in pursuit for something more.  I am deprived because I refuse to slow, to stop, to dwell in this present space.  Somehow, imperceptible millimeter by millimeter the Lord is etching His ways into my heart.  My spirit turning to His.

It’s early evening, Tuesday the 22nd of September.  Fall is here.  Warm light skims the ivory blanket, reflecting back against the far wall of our Ron Don room.  Outside the city buses drive by, waning light seems to illuminate from within thousands and millions of green leaves, draped in layers and layers of organic veils like pieces of stained glass.  We arrived back in Seattle late last night and got to the hospital by 7:30 this morning.  It was supposed to be 45 minutes worth of procedures – a bone marrow aspirate and biopsy, intrathecal chemo, an endoscopy and a flexible sigmoidoscopy.  We finally left about 5:30pm.  After two hours of waiting in the pre-op area, labs drawn earlier revealed the need for yet another platelet transfusion, the previous only two days ago.  So upstairs we went to the Hem/Onc clinic to wait for STAT platelets and the hour to get them in.  Then back downstair to wait for the anesthesiologist finish his case because he had graciously insisted we were going to get this all done today.  All went well and he determined that Allistaire’s heart is now “robust” enough to no longer require cardiac anesthesia.  The GI doc was also pleased because all looked well with the exception of one overt and easily treatable problem.  Apparently Allistaire has a whole lot of hardened stool backed up in her colon that he said can actually cause pain on par with a burst appendix.  The fix is a big time dose of laxatives over the next several days to clear her out.  All was well in recovery initially but then for several additional hours she struggled with extreme nausea and threw up dark reddish brown flecks of blood from the multiple biopsies that were taken.  She sleeps now, Doggie tucked up under her head.

On Thursday Allistaire will have a brain MRI, a PET/CT and a CT with IV and oral contrast.  This will both provide additional information about her gut and, along with results from the bone marrow test, help give a clearer picture of where things stand with her leukemia.  A little over a month ago, pneumonia was discovered in her lungs from her previous CT.  Dr. Ostrowski heard weezing in her lungs last week, though the anesthesiologist did not today.  She’s been on antibiotics forever and was switched to an even broader spectrum anti-fungal once the pneumonia was discovered.  Her ANC has been relatively decent so everything is being done as far as I can tell, to combat the pneumonia.  The state of her lungs could impact her options going forward if more chemo is needed if the T-cells are not able to keep her cancer at bay.  Interestingly, her persistence research labs from Day+14 from the T-cell infusion show that the percent of the genetically modified WT1 T-cells has actually increased from the Day+4 persistence labs up to about 10% from 6%.  What this means as far as how effectively the T-cells might be working is unclear.  It does, however, direct the course going over.  Only once the percentage drops below 3% is the second and final infusion of T-cells given.  This means at this point there is no plan in place for the second infusion and Allistaire has been officially been dismissed from the care of Seattle Cancer Care Alliance back to Seattle Children’s.  She has tolerated the T-cells incredibly well with no known side-effects which is a great gift when dealing with experimental treatment.

As is ever the case, the days ahead are utterly unknown.  The nurse today asked Allistaire what she’s going to be for Halloween.  Halloween?  Are you kidding?  That’s a million years away.  Our life is lived in less than hour increments.  Last year we planned for the girls to trick-or-treat along Main Street at home in Bozeman with a party to head to afterward.  A week before Halloween Allistaire’s relapse was discovered and 24 hours later we were headed to Seattle.  I saw my friend Megan on the soccer field on Sunday.  Her husband told me what field to look for her at but as I scanned the folk before me I realized I had no idea how long her hair was.  We met at Cancer Support Community with her bald head and blue eyes as she battled lymphoma.  She told me of being shaken by the news of her friend’s son being diagnosed with a brain tumor just days after he and her daughter had played together.  He is one of two new cancer diagnoses of children in our town in the past few weeks.  “I don’t take having my kids for granted,” she said.

“I feel like flesh rubbed raw,” I told my mother-in-law.  Every touch, no matter how light, brings stinging pain.  My reserve is wiped away.  I have no buffer.  The pain just penetrates immediately.  Sometimes I gasp, fighting to get air, wondering how to keep going, disoriented by circumstances ever outside of my control that change constantly without warning.  I read some simple yet profound words by Paul Tripp that met me right where I was, where I am.  A friend shared a song.  A song I’d like to wake to, to end my days with.  The Lord provides.  He hems me in behind and before. He goes behind me and breathes life into death, redeeming the brokenness, the loss, the ugliness, the sin and death.  He guards my right foot from slipping.  He is invites me to dwell in the shadow of His wings.  He goes before me, sovereignly orchestrating the days ahead.  He lays down provision, provision that I cannot yet imagine nor even know I will need.  He gives me manna, sustenance each day.  He destroys.  He annihilates.  He ravages.  He calls me to harken to His voice that says what this life is about, what it’s not about.  Damn the closet doors.  They don’t matter.  Forget that stretch mark strained bulge of fat on your belly.  Let go.  At long last release that white knuckled grip on what you “think” this life ought to be.  Rest.  Rest.  Dwell now, here, in this fleeting moment, in the ragged land punctured through with un-doing beauty, with sights too glorious and too painful for words.

But sometimes I just flat out tell Him, “NO!!!!”  I don’t want what you have for me God!!!  I want this to be done.  I don’t want this pain.  I don’t want this chaos.  We’re in the ER now (Wednesday morning).  Allistaire continued to throw up and I had to call the Hem/Onc Fellow on-call last night.  She took some of her meds but then threw up.  She essentially hadn’t had almost anything to drink since the night before.  I was worried about her getting dehydrated.  She moaned in pain all night long but didn’t actually throw up until 5:45am.  This time it was that dark green bile I had only ever seen during her ileus in July.  Dread swept in.  But right before she threw up she pooped which meant her gut had moved.  A few hours later she threw up the green bile again.  Immediately afterward I made her take all of her meds which she was able to keep in for over an hour which meant that hopefully they were absorbed.  I called the GI clinic who instructed us to go to the ER to get her assessed.  She has continued to throw up but is on fluids now and the CT w/contrast that was scheduled tomorrow will happen today as soon as we can get the oral contrast in.  The thought of another ileus and the adjoining hospital stay is daunting.

I tell God, No, this is too far, too much.  This has to stop.  But who am I?  What is the purpose of my life, of Allistaire’s?  Is it not ultimately to know God and make Him known?  Isn’t it really about yielding to His will because the source of His will is His love for us, His goodwill to all men, His desire that all might come to see Him as He is – the only source of true life?  Am I really going to say No to that?  Because that is not love.  Love yields and sacrifices for the good of another.  That is what God is calling me to – Jai, will you lay down your life for another?  Will you lay down your expectations and declarations of what you think you deserve and trust Me to walk you through this life in a way that allows My beauty and truth to be seen?  I used to think I wanted to be a missionary.  I had visions of jungles and Africa.  But isn’t being a missionary really just saying Yes to God that where you are is where He wants you?  Who am I to define the boundaries of the mission field?  What if there’s one conversation with one nurse or one fellow parent that this is all for?  What if there is one day that all these days will have brought me to that is the day the Lord moves in the heart of another through our brutal road?  Will I love?  Because loving others means yielding to the Lord right now, here.  Man it is so very hard to do because everything in me rages that this is all fucked up!  And it is!  It is!  Christ came into the world precisely because it is a mess and fundamentally broken.  God could have fixed everything that very moment it broke, but He didn’t.  Christ could have brought everything into redemption when He walked on earth but He didn’t.  God has been at work from before the beginning.  He is an epic God.  His scale is far vaster and more complex than I can begin to imagine.

One night at home this past week, Sten and I sat on the deck in the dark, looking up at the staggering beauty of the star filled sky.  I asked him about one particular cluster of stars.  He pulled out his iPhone with the snazzy app that’s supposed to allow you to point your phone in the direction of the stars of inquiry and it will show you their names and the surrounding constellations.  As he fiddled with the settings we discovered the app also allows you to see not just the visible light spectrum part of the sky, but also you can see it based on the gamma rays and x-rays present.  Each selection on the app allows you to “see” a different portion of the electromagnetic spectrum the our eyes cannot detect.  Eleven years ago I taught Physical Science to 9th graders.  I found myself swooning whenever we discussed the electromagnetic spectrum – so much reality always right there but utterly invisible to me.  My eyes, my body, my senses had no way to detect infrared light or radio waves and yet, they really were there – if only I had a way to “see” them.  I believe the way the Lord knows and sees the universe and time is a bit like the electromagnetic spectrum.  He can see ALL that is there, that is real, at once, in full clarity and detail.  I, well, I can only see the smallest segment of the vast reality that is.

Paul Tripp’s words that helped me last week

“It is Well” song that encouraged me

 

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