Category Archives: Obliteride – Support me in funding cancer research



IMG_2802 IMG_2798 IMG_2794 IMG_2791IMG_2811I grew up in a land of unfoldings.  A land where one must bend low, look now, another unfurling.  A land of delicate magic, intricate.  Stepping over branches slick, footsteps quiet on the soft underfloor of forest.  Ferns unwinding, their beings all folded up tight in complex arrangement, arching their backs, rising toward the light filtering down to them from high in the silhouettes of tree tops.  Little ferns with leaves paper-thin, bright green in direct light, countless shapes repeating.  Fuzzy juicy stalks and delicate sleek black ones.  Mosses creeping, covering like downy shawl a glorious, vigorous green.  Everywhere lush.  I recall making a fern fort once.  Ripping up scores of Lady Ferns, weaving them into walls and overhanging.  I lay down upon the mossy floor and looked up through that scattered light, the greens bright like stained glass.  Ferns and moss, resplendent greens of life unrelenting, delicate yet most resilient.  Two gifts of this earth instantly inciting glee in my heart.  Like Thoreau, I repeat, “I think my own soul must be a bright invisible green.”

And birds.  Oh the birds.  Fat breasted robins calling in the early morning when light has only begun to seep.  Chatterings, bushes alive with tiny throbbing birds.  Evening calls as day calms toward night.  The days are lengthening.  Crocuses and daffodils thrust up from the dirt.  Cherry blossoms pink, forsythia and azalea.  Tiny white clusters like thick stars on the limbs of apple trees.  This is something Washington has that our home in Montana never will.  Spring.  Winter turns almost suddenly to summer in Montana and doesn’t come until June.  But here, in this land, the drear of February, a time when the weariness of winter starts to become intolerable, it catches you off guard…there, did you see it?  Stirrings.  Hints that winter will not forever stake its claim.  In the cold of ground and the rigidness of trees and branches, life still courses.  Somehow what looked vacant, dead, unmovable, is everything to the contrary.  Nay, there is an overcoming, some inner working unseen to my eyes, yet with such vigor as to burst through rock and soil and press out of wood and limb.  A draw from distant lands, a call for the birds to return.

Spring is as sure as anything in this life.  We know it deep in our flesh, our own veins course with anticipation.  An inclining.  An unconscious arching toward light, a yearning to feel warmth of light and freshness of breeze.  Some mineral tang on the tongue that declares life never ceases, though all appears to disagree.  That’s what we’re banking on, that is what moves us through our days.  A hope.  Hope.  Such an overused word.  But no, no.  It is not merely some ancient knowledge that the earth will continue spinning on its axis, marking countless days and nights and a relentless orbit that will always swing back toward sun.  No.  Hope is unique to our humanity.  Hope looks about and not only says, but proclaims, what I see now is not all that there is, there may indeed be more and different.  Hope looks forward.  Hope is the very essence of endurance.

There are stirrings in the woods, stirrings of song and light and delicate unfurlings that press against the dark and the cold.  It makes me giddy.  Giddy that death will never ultimately overcome.  Giddy that the world is arcing in its orbit toward the sun.  Giddy that one day the land will be bursting with life and the sun will rule the day and their will be an unstoppable flourishing.  Abundance will mark life.  No longer scarcity.  No longer mere grasps at survival.  No longer decay and death.  The greens are unfurling.  The birds have begun to call out to the morning.  Spring is that tangible bright expression of the hope that courses through me.

And I have much to be giddy about.  Hope abounds.

The land is wakening and it lightens the step and everywhere there is more to smile about.  And Allistaire is doing just so surprisingly well.  Dr. Sohel Meshinchi, our current BMT (Bone Marrow Transplant) clinic attending doctor, has ended our last several clinic visits with the statement, “I have no concerns.”  This is like balm to the feverish forehead of a cancer parent.  Her labs continue to look great and even improve.  Her red blood and platelets are recovering, with platelet transfusions being spread out to one or two a week, whereas they had been every day to every-other day.  Robin, our clinic nurse the other day said with glee, “Look Jai, look here at her ANC (Absolute Neutrophil Count), it’s normal.”  She looked at me with shining eyes.  Normal.  2,612  What an amazing number.  What a wonder?!  Normal.  Imagine that!!!!  Her liver function numbers have improved substantially and are only slightly high, her kidneys continue to do well and her BNP (measure of heart distress) was down to 119 the other day, a gorgeously low lab value.  She continues to be CMV negative (Cytomegalovirus which can reactivate).  Her weight is good as her appetite improves and taste buds return to normal.  She has begun to eat salad, and even declares its tasty with the exception of the one half of one grape tomato I force upon her which causes her to dramatically grimace and gag every single time.  She skips and paints and rides her bike and sings really loud with her headphones on.

Today marks Day+43 post transplant.  We are still very early in this very long process.  My brother asked me a while back, when we would know if the transplant was successful.  Success is multi-pronged in this situation.  The first mark of success is that she has survived the actual transplant process itself.  Her body and specifically, her heart was not overwhelmed by the cytokine storm of the infusion of the donor cells, nor the hyper-hydration necessary with the chemo.  The cyclophosphamide did not cause the slim but terrifyingly possible acute heart damage.  Her lungs did not bleed nor did she have the brain damage possible with MMF.  Her liver remained healthy despite the increased risk of VOD brought on by several rounds of Mylotarg.  Her graft did not fail, rather Sten’s cells have latched on forcefully resulting in 100% chimerisms.  Her marrow is clear of detectable cancer both by Flow Cytometry and cytogenetics.  Thus far, her transplant has been a success.  It is a beautiful surprise.  Allistaire’s golden birthday is coming up soon and honestly, as I look back, this is the fifth birthday that I never knew would come and had much reason to think it never would.  It is the fifth time we have had cause to celebrate life that might not have been, life that has been relentlessly hounded by cancer.  But hope has continued to mark our days, and now years.

This next phase of transplant continues to be about making sure the cancer is kept away and about being on guard for GVHD (Graft Versus Host Disease).  Every two weeks she gets a LP (Lumbar Puncture) in which Intrathecal Chemo is given and a sample is withdrawn to check for disease.  This means chemo is placed directly into her spinal fluid as it can be a “sanctuary for leukemia,” given the blood/brain barrier that does not otherwise allow chemotherapy to pass through.  While CNS (Central Nervous System) relapse is less common in AML (Acute Myeloid Leukemia) than in ALL (Acute Lymphoblastic Leukemia), the more common form of childhood leukemia, it is still a danger.  She will get 5 LPs in all post-transplant.  So far, her LPs have not detected any cancer in the spinal fluid.  She will also be getting a BMA (Bone Marrow Aspirate), and PET/CT on March 15th.  Typically BMAs are done post transplant only on Day+28 and Day+80.  But for high risk patients they include another intermediate BMA.  March 15th will be her first PET/CT since November and before her last round of chemo pre-transplant.  At that time, her body was clear of chloromas with the exception of those in her sinuses, which had reduced in bulk from the previous round of chemo but were still present along with one new small chloroma.  While her sinuses received 5 fractions of focal radiation and her body was barraged with TBI (Total Body Irradiation) and systemic chemo (fludarabine and cyclophosphamide), I am still nervous about this upcoming scan.  Her cancer has defied countless assaults, its tenacity awe-inspiring and terror invoking.

At this point, there is no evidence of her disease.  I rejoice at this and simultaneously remain on high alert, knowing “no evidence of disease,” in no way means we can confidently say there is no disease.  The other significant issue the doctors and I are ever watchful of is GVHD (Graft Versus Host Disease). GVHD is when the donor cells attack the host (Allistaire), most commonly in the skin, gut and liver.  GVHD is always a concern in bone marrow transplants but especially so in Allistaire’s case because of the much greater mismatch to Sten.  Common symptoms of GVHD include skin rashes, tummy pain which can cause the patient to stop eating, diarrhea, and elevated LFTs (Liver Function Tests).  There is a strange love-hate dance with GVHD.  GVHD can severely impact quality of life and even cause death.  What starts out small can suddenly turn into “rip-roaring GVHD,” so caution and response is necessary.  But the treatment for GVHD has its own consequences.  Immune suppressants such as prednisone and cyclosporine are given to tamp down the aggravated response of the T-cells.  However, not only can these drugs have devastating effects on bones and joints (it’s not uncommon for teenagers to get hip and knee replacements), but the rest of the patient’s immune system is suppressed along with the T-cells causing the GVHD.  This means the body’s ability to fight infection is radically diminished, again sometimes resulting in death from infection.  In addition to the complications to be avoided from responding with medication to GVHD, the doctors actually want some GVHD.  The thing is, when the donor cells are ramped up and attacking the host/patient, there is also the potential for the GVL effect (Graft Versus Leukemia) or GVT (Graft Versus Tumor in non-leukemic transplant patients).  This is the secret weapon of stem cell transplants, an army roving the body to wipe out anything foreign which includes any lingering cancer cells.  The hope of a transplant as a cure for cancer does not rely solely on the intensity of the conditioning, but rather, the more sophisticated element of the transplant is its micro soldiers that infiltrate the whole body and have the lasting ability to eradicate cancer.  This is the  “immunotherapy” element of a transplant.  This is where I swoon.  Don’t you just love it?  And it has taken decades of research to begin to tap these mysteries.

A virus has taken up residence in Allistaire.  Interestingly, it is a virus which even the most sensitive viral tests at SCCA cannot identify, never the less, she has had copious amounts of snot and some coughing.  It is her first cold in over a year at least.  With this virus we have seen what may be a small flare of GVHD, evidenced by a red spotted rash on her cheeks, spreading out from near her nose.  Additionally, there seems to be a bit of a bumpy, slightly patchy pink rash on parts of her arms, back and chest.  I was instructed to watch carefully for its advance both in terms of spread and speed.  When Allistaire received the infusion of Sten’s stem cells (say that 5 times fast), she was given some mature blood cells from his peripheral blood but primarily his stem cells.  Because the mature blood cells she received from her have mostly died out at this point, the immune fighting cells in Allistaire’s body are immature and have never been exposed to pathogens and are presently “uncoordinated” in their assault on this viral invader.  Hence, both the virus and places like her skin are under attack.  Apparently this pairing of having a virus and a flare of GVHD is very common.  In fact, when there is evidence of GVHD, the doctors then go looking for an infection.

The other possible cause of this potential GVHD flare is the removal of one of her immunsuppressants and the tapering of the other.  According to the protocol for her transplant, her MMF was to be stopped at Day+35.  Typically at SCCA they would rather taper the MMF rather than stop it abruptly.  However, Allistaire has clearly and repeatedly demonstrated that she has very aggressive disease putting her at extremely high risk for relapse even now.  Removing the immune suppressants releases the hold on the T-cells which we hope will identify and wipe out any remaining cancer cells. For this reason, the doctors are very motivated to remove all immune suppression as rapidly as is safe to do so.    So about a week ago her MMF was stopped all together.  Then this Monday, 2/22, we began to taper her tacrolimus on Day+41, whereas the protocol calls for the taper to begin on Day+180.  During this tapering process, she will be “watched like a hawk,” as the BMT staff seems to like to say, looking for any signs of GVHD and potentially backing off or slowing down on her taper if necessary.  I am told that in these Haplo transplants, it is more common to see GVHD later than in unrelated-matched donor transplants (probably because of the post-transplant cyclophosphamide).  More typically, acute GVHD is seen around Day+60 and later.

There is in the transplant world a magic number.  One-hundred.  One-hundred days is a song, like some mantra, some enchantment, a mystical goal out there in the fog.  The standard is that, baring any serious complications, a patient’s Hickman line is pulled on Day+100 and is allowed at long last, to return home.  I haven’t calculated the date exactly, but I know in Allistaire’s case, Day+100 is somewhere around mid-April.  It’s out there.  The date I avoid, I skirt around.  I only allow it to linger in my periphery.  I will not look it straight on.  I am too well acquainted with disappointment.  I keep my head down and we trudge on, willing ourselves not to be tired, not to be discouraged.

In August 2013, I was told in the most direct way, that Allistaire’s only chance for survival was a second bone marrow transplant.  At that time, she was only Day+50 post her first transplant.  You must wait an absolute minimum of six months between transplants to even have a chance of survival.  For us that meant December.  December was impossibly far off and the idea of going through it all over again was the most overwhelming moment of my life.  People say the day of diagnosis is the worst.  I most heartily disagree.  When you are diagnosed, most of the time you have a plan, a means of response, hope that you can make it through.  But what about when you’ve done the thing you came to do?  You tried the big gun.  And it just didn’t work.  It wasn’t enough.  And now your foe is even stronger than when you first began because it has mutated and become resistant at the very same moment that you are at your weakest, your most worn-down.  But then Allistaire went back into remission with one round of chemo and there continued to be no more evidence of her disease as she completed a total of seven rounds of chemo post transplant.  So when the day came for her one-year post-transplant follow-up and all looked well, I kept quiet.  I was so very tired you see.  I never asked about that second transplant.  I just smiled and let myself finally feel a bit at ease.

Looking back, I understand the depth of that woman’s fatigue, but part of me screams, “You fool!”  What if we had done that second transplant then?  Her body was in great shape.  No heart failure.  No evidence of disease.  A perfect time really for a second transplant.  But I didn’t ask.  I was tired.  I just wanted to run as fast as could out of that cancer world and have a shot at normal life.  Well, really I can’t remember if I asked or not.  But even if I did, I must have accepted that answer.  I’m not going to let that happen this time, no matter how weary I may be.  I keep pressing the question.  What are we doing to help prevent relapse?  Okay, okay, we’ll do that, but what else can we do?  What about this?  What about that?  As with so much in the world of cancer treatment, we are dealing in the world of utter unknowns.  Dr. Meshinchi told me today that Allistaire’s specific MLL (Multi-Lineage Leukemia) translocation where chromosome 11 just broke off and attached to another chromosome, is unique among the 3,000 pediatric AML samples he has in his database.  There is no data to say what someone is Allistaire’s very unique situation most benefits from.  And every form of treatment has the potential for side-effects and the question is always, are those potential risks worth the unknown, untried benefit?

For now the plan is this: we will rapidly taper off all immune suppressants as fast as possible while trying to avoid GVHD in any severity.  The hope is to allow the T-cells to have the brakes taken off of them and allow them free reign to roam wide and vigorously to eliminate any remaining cancer cells.  Ironically, if there is no evidence of GVHD, we are planning on a bold move, rarely attempted, to elicit a GVHD response.  The goal is to be off of all immune suppressants by Day+100 and if at that time there has been no evidence of GVHD, Allistaire will be given DLI (Donor Lymphocyte Infusion).  DLI is an infusion of just lymphocytes from Sten.  There are probably enough stored cells from his stem cell donation to get the necessary number of lymphocytes.  If not, he can do a simple blood donation which would not require GCSF shots because it would not include stem cells.  These donor lymphocytes would be infused into Allistaire in hopes that the white-blood cell hunters will recognize Allistaire as foreign and go on the war-path.  Soheil does not recall them ever trying this “prophylactic” DLI approach.  DLI has been given in the context of minimal residual disease in hopes to wipe out tiny bits of cancer, but never or very rarely when there is no actual evidence of disease.  If she were to get DLI and it was well tolerated, she would be given a larger second dose about a month later.  This also means that we have a good chance of having to be out in Seattle longer.  It is all a matter of waiting and seeing.

A few weeks ago I found myself feeling extremely down, baffled and frustrated with my deep sense of sadness.  We had just been discharged from the hospital and moved into our apartment at Ronald McDonald House.  Allistaire was doing amazingly well, yet I could not shake saturating sadness.  It was an act of will to hold back the tide of tears threatening to swamp my little boat.  Perhaps like a runner in an ultra-marathon, having finally made it through transplant, I found all my reserves of energy come crashing down.  I felt tired to my very core.  When I tried to force myself to look up, all I could see were the sad, tired faces of my friends who have lost their children.  I kept thinking of Stevie and Lilly reduced to ashes.  How many?  Sara, Ruby, Mario, Benton, Jaxon, Tristin, Christian, Pantpreet, Nolan, Jordan, Marleigh, Howie, Cyrus, Zach, Karlee, Bella, Lilly, Stevie.  These are the children who have died in the time Allistaire has been in treatment – children and/or their parents that I have known – not even close to the total number that have died.  These are the faces I have known.  Though I have much to rejoice in with Allistaire’s progress, it has sometimes felt like her death is inevitable, just a matter of time.  Sometimes my whole vision is consumed with the bright faces of children gone still.  Home and a life freed from the grips of cancer sometimes seems like an impossible dream.

But there are stirrings see?  Whisperings.  Eyes a blaze with zeal.  Minds whirling with ideas.  Happenings.  Little discoveries and victories that are starting to turn the tide.  As the earth has reached the furthest reaches of its orbit, it has begun its journey back toward the sun, the earth warming and throbbing with life, unfurling.  There are stirrings too in the world of cancer research.  Great wonders have begun to be revealed.  While it has literally taken decades and decades of research to get here, there is now starting to be a new world of promising cancer treatments which look in and down to the genetic level, down to the world of molecules.  Immunotherapy, in which the intricacies of a patient’s own immune system is harnessed to track down and obliterate cancer while sparing healthy cells, is making incredible advances.  Like a wild-fire that starts with a mere spark, so it seems is the world of immunotherapy.  There is hope that the world of cancer treatment is on the verge of a tremendous revolution.  There is hope that we are on the cusp of seeing a future for cancer patients that will look radically different from that dominated by the standard weaponry of chemotherapy and radiation.

Right at the center of this immunotherapy revolution in cancer treatment is our much beloved Fred Hutchinson Cancer Research Center.  Check out this article from The Huffington Post that tells about the successes of Dr. Stanley Riddell of Fred Hutch which has yielded amazing results: putting cancer patients who have failed all other forms of treatment into remission at staggering rates using T-cells.  Everywhere I turn at Fred Hutch there are new amazing trials and areas of research underway.  Allistaire’s clinic attending, Dr. Soheil Meshinchi, and our dear Dr. Marie Bleakley are working on designing TCR T-cells that target highly specific proteins found only on leukemic cells.  I sit and ask Soheil question after question and listen with mouth gaping, on the edge of my seat, eager to hear where the world is headed.

But there have also been moments as I’ve sat in wonder that I also find myself grieving.  All of these advances are far too late for the eighteen children whose names I listed above.  Much is even too late for Allistaire.  Just four years have passed since she was first diagnosed and already the treatment of AML has changed.  There are new tests done at the point of diagnosis to better determine what course of treatment works best with the individual’s unique disease.  There are new treatment options that simply did not previously exist. It was only in April 2012 that the very first child was treated with genetically modified T-cells.  I wonder what it would be like if Allistaire were diagnosed today, rather than four years ago.  How much better would her chance of survival be?  I also hear Soheil mention over and over again, “it’s a matter or resources…if we had the resources…”  Resources!!!!!  Sometimes I want to scream.  So you mean, if you had the resources you could do this and this and this and give my child the treatment she so desperately needs?  But you see, resources are scarce and government funding has been in short supply.  These very brilliant, intelligent brains that should be devoting their time and energy to research, to what their good at, have been having to run around trying to scrape up money to keep their labs going, to find a way to pay to design that test, that piece of equipment, get the research from the lab to treatment in the clinic.

You know what I want to see?  I want to see cancer research accelerated so that fewer kids and moms and brothers and friends have to have their lives cut short.  I want to see treatments that actually cure! I want to see treatments that cure without poisoning hearts and kidneys and brains!  I want to watch in wonder as scientists learn to use our very own beautiful, wild, amazing immune systems to obliterate cancer.  And science is science – all these advances in understanding the genetic base for not only cancer, but for so many diseases, and how to make genetic modifications and therapies promises to benefit lives touching each one of us!

I’m going to get on my bike again this summer of 2016 and ride to accelerate research, to save lives faster, to obliterate cancer.  I’m on Team Baldy Tops again this year in Obliteride and I’d love to have you join us!  Come on out the weekend of August 13-14th and ride with us.  There are routes for every skill level, from 10 miles to 150 miles.  If you’re not up for riding, you can still join our team as a virtual rider and raise funds for cancer research.  And easiest of all, you can donate!  One-hundred percent of all funds raised in Obliteride go to cancer research at Fred Hutch!

Hope is being able to imagine a world that looks different than it does now.  The cold and dark of winter is turning toward the bright zeal of spring.  One day kids diagnosed with cancer won’t have to die, but can be cured and go on to flourish in this life.  One day your mom, your wife, your sister, your daughter won’t have to fear breast and ovarian cancer and having to make the brutal choice of whether or not to cut out chunks of her womanhood.  One day you won’t have to watch your dad whither away or lose your best friend.  While my ultimate hope for life overcoming death rests in Jesus Christ and His promises of redemption, resurrection and a new heaven and a new earth, it is joy to see His grace in this lifetime as this vicious disease has begun to meet its match.

I will ride in Obliteride again this year because I will forever be indebted to Fred Hutchinson Cancer Research Center.  Allistaire would not be alive today were it not for the research, the clinical trials and the treatment she has received through Fred Hutch.  I ride in gratitude for my child’s life.  I ride in sorrow for the children I’ve known who have died.  I ride in hope for cures for cancer!

Check out this great video of Allistaire promoting Obliteride, now showing in movie theaters in the Seattle area.

Donate HERE to support me in Obliteride to end cancer!

Check out all the details at

See what Obliteride looked like last summer and catch glimpses of our awesome Team Baldy Tops

Learn more about Immunotherapy

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Numbers, Wild Numbers








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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IMG_2817Bewilder.  Is that the right word?  I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching?  I am out here, cast in the land between lands, this already and not yet, ever tension.  But she is so alive?!  “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?”  All heads nod.

I didn’t want to cry.  I didn’t want to have my heart tearing out of me be seen as with audience by these eight.  I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting.  I studied the tree tops beyond those panes of glass, never seeing them.  “Her heart could suddenly stop.  She could have an arrhythmia.”  Gutteral cry, “Oh God.”  It was not hard for the images of doctors swarming her to come vivid.  Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location.  “Code Blue Ocean 8 in front of the lab.”  “Code Blue River 5 room 307.”  I have seen the flood of doctors and nurses responding like blood gushing a wound.  Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl.  I know if it came to this it would be the end.  While they might be able to bring her temporarily back, there would ultimately be no return, no recovery.  But yes, yes, yes try to bring her back because I want to gather those who have so cherished her.  I want that time to surround her with faces who hold her dear.  I want that chance to say good-bye one last time.  I want to blow her kisses.  I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all.  At some point in the future, they will try to wean her off the Milrinone.  Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function.  So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience.  If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her.  It would foretell the end.  If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time.  It will take time.  The question is whether or not her cancer will allow such time.  As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow.  The extremely poor condition of her heart continues to make sedation unnecessarily risky.  The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image.  She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that.  Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image.  The advantage of the PET scan is that it shows the active metabolic cancer.  Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough.  For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry.  While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission.  I can’t imagine doing nothing further.  So once her ANC reaches 1,000 she will begin getting Azacitidine.  Today her ANC is 348.  Neither Clofarabine or Decitabine are options because they suppress blood counts too much.  At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge.  She has no reserve.  The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant.  Another upside is that it can be given outpatient.  If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective.  However, radiation is given under sedation for someone as young as Allistaire.  You must lay completely still in the exact position they place you in.  Radiation is incredibly precisely targeted.  A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation.  Allistaire would be left totally alone in that room with the foot thick lead door.  I really don’t know if she could do it.  If Allistaire is not in remission, every single thing changes.  If she is not in remission, she is done, done.  There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial)  This trial requires that Allistaire’s ejection fraction be 35 or higher.  Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial.  The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell.  Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs.  The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices.  My face lit up with possibility and terror at such a possibility, such an extreme measure.  It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover.  I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire.  Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon.  The short of it is that a VAD is not an option for Allistaire.  You cannot go through a bone marrow transplant with a VAD.  The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy.  The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD.  In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured.  It has been compensating a very long time and likely cannot bounce back.  A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for.  The thought of a heart transplant is insane to me, insane.  But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ.  The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years.  That sounds like a long time.  But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart.  Yesterday the cardiologists wanted an X-ray of her lungs to look for edema.  They put the little lead heart on her groin again and it was like a knife twisting in me.  In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!”  I’ve already yielded her ovaries.  I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities.  I know her growth and bones have already been harmed.  She has already lost so many days as a child, and now her heart too will be gouged out?  It is like cutting off someone’s leg and saying, be happy, you still have one leg.  And then, oh wait, we must cut off that other leg and an arm.  Limbless, you are thankful to be alive.  But you have been harmed you see?  You have been ravaged.  The exchange for your life has cost so very much.  But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road.  “I don’t know how to do this,” my voice bleak.  “No one knows how to do this,” he told me.  It is not natural that a child should die before their parent.  While it happens often enough, it is not the natural order.  He was very gracious toward us.  I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options.  Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day.  That is all I could possibly ask for.  I just need to know that she is being fought for, that she is not being given up.  And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on.  It is not yet time to lay down and rest.  We press on, we endure.  We put our face to the wind and cry out in anguish and fierce determination.  There may be a way through, there may.  There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers.  I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours.  Thank you.  Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ.  Thank you for sharing our burden.  Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice!  For we are calling out to you Oh GOD!  We do not understand your ways.  What you are doing is here is so unclear, it seems so dreadfully wrong.  How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god.  I will stand in worship, though the fire consume me.  Am I fool?  Many will nod, yes.  But you see, I have seen the Lord.  I have heard His voice.  I choose to turn my face to Him.  I will again fix my eyes on Him.  I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me.  For the joy that will come, but the joy too that is, that is in this present time.  I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days.  I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence.  It is not about manners, it is about love, love.  I seek to love.  I seek to love Allistaire.  I seek to love Sten and Solveig.  I seek to love each nurse, doctor and person that I encounter.  For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research.  Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way.  If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire.  The details can be found HERE on Facebook.  The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday.  Please do not send any birthday gifts.  The truth is, she has enough in the way of toys and such.  If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl.  Prayer is not some magic equation where enough prayers by enough people yields the desired result.  Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”IMG_2804 IMG_2809 IMG_2824 IMG_2822 IMG_2813 IMG_2802


Wait and See


IMG_2792Strange how you can have expectations, just ideas you’ve grabbed from where?  Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat.  Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week.  Upon what basis did I come up with those numbers?  Out of thin vacant air.  Today marks her 37th day in the PICU.  Today we begin our 6th week.  I remember a friend telling me they were in the PICU for two months.  “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight.  Last Tuesday, 2/17, we were scheduled to be transferred to the  BMT (Bone Marrow Transplant) team.  We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin.  It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come.  In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal.  The reality is sinking into me that she may never get to transplant, or at the best, it could be far off.  A summer gone.  The doctors tell me we must be patient, and wait and see, that it is often best to be patient.  Patience, yes, I know something of patience.  But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans.  While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent.  To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it.  Her heart rate and respirations trended up slightly and there was the issue of nausea to consider.  They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms.  While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today.  I feel disheartened.  Yesterday they decided to put her on Digoxin, another heart med.  Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal.  The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone.  They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels.  Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.”  Her Lasix draws off potassium which they replace in her TPN (IV nutrition).  On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.”  It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors.  Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure.  Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo.  I don’t feel very optimistic.  The BNP hasn’t gone down really.  We’ll see.  She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons.  It was originally planned for Tuesday solely based on protocol.  If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on.  As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering.  However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation.  At this point, her severe heart failure makes anesthesia more risky.  Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team.  Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly.  Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks.  I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened.  So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast.  After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down.  The nurse re-loaded her cup and she finally got in the minimally required amount.  The results of the CT were mixed.  “There is minimal residual wall thickening involving the sigmoid colon.  The rectal wall thickening has nearly completely resolved.  New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening.  There is a slight interval increase in degree of surrounding fat stranding.  The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.”  So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete.  But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now.  Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema.  These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting.  I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation.  My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near.  I love that she too is so passionate about finding a way through for her.  We are both assuming her marrow remains in remission.  So she proposes we put her on Azacitadine given that it worked before.  (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.)  I wondered about possibly using Decitabine since it’s a little more hard-core than Aza.  We do still have her chloromas (solid leukemia) to consider.  She said she would consult the other AML docs.  She also mentioned Clofarabine as an option.  The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan.  Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine.  All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer.  Wahoo!!!  I love options!  After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant.  But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is.  I couldn’t help myself, knowing all that has transpired over this last month.  I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day.  Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars.  Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days.  This puts her total bill since diagnosis well over 5 million dollars.  Isn’t that staggering?!  Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?!  What if that money could be put toward cancer research?  What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer?  What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks?  We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research.  Such an exchange is not possible.  But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help.  You have felt powerless to do anything to help Allistaire.  Giving to cancer research may not feel like directly helping Allistaire but it is!  First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey.  It is tangible.  I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more!  Will you stand beside me?  Will you give?  And you know what?  We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research!  Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission!  This is not some ambiguous, indirect, vague blessing.  Cancer research is precisely what provided her last transplant which has given her life the past two years.  You say you want to help.  Your heart is heavy with grief for us.  You wring your hands wondering what you can possibly do.  GIVE!  Support cancer research at Fred Hutchinson Cancer Research Center!  It’s not hard, it’s not complicated.  Give.  Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.IMG_2791 IMG_2790

Stagger, Tremble


IMG_2751We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  (2 Corinthians 4:8-9)

Hard pressed.  Perplexed.  Struck down.  The weight of sorrow presses so heavy on my brow.  Sensations so familiar, so brutally common.  How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through.  I have never had a stalker, never been abused.  But I taste the mineral tang of terror reinforced again and again, blood on the tongue.  The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare.  My heart exposed from tearing flesh.  Assault, violence, silent snuffing out with dark weighty force.  I weary circling round and round with this foe.  Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief.  Relentless.  I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue.  Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance.  That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it.  Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar.  Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land.  And I yearn for you.  My whole being angles forward in desire, attraction.  Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place.  Day by day I must walk.  Another day with numbers that do not change.  A BNP that rises here and bobs briefly down, never nearly low enough.  Every day the same, the same, the same, “no data,” the labs read.  “No data.”  There is nothing, not a single white blood cell in 28 days.  No sign of marrow stirring.  Silence. Absence.  Cavern empty.  And yet, she has changed.  That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising.  Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact.  Allistaire Kieron Anderson is emerging from this ragged fray, this assault.  I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs.  Peach fuzz.  Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin.  She plays and talks and wants me to see what she’s done, what she’s created.  I swoon and am drawn in, her irresistible pull of delight.  I adore her, my whole being arches forward, captured by the beauty of her sweet spirit.  I cherish her.

Heart failure.  Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage.  Heart failure.  I tell Dr. Hakens how I hate to hear those words.  “Well, you can’t sugarcoat failure.”  Another blow.  Monday’s echo was devastating.  The door to transplant slammed closed.  Her ejection fraction was 29 and shortening fraction 12.  The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination.  What must be do to stop this torrent of loss, I wail?  Are we doing all we can?  We push through, we push, we walk forward.  There must be a way, there must.  This cannot be it.  Oh don’t let this be it.  How can we accept defeat.  How can we just let this bright force slowly fizzle and die?  All we have known for three years is FIGHT!  How now can we surrender; raise the white flag and say enough?  Death as end point has always, ever been there – stark on the horizon.  A black silhouette impossible to disregard, impossible not to recognize.  But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won.  But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse.  This image wounds in a uniquely awful way.  I breaks my heart a fresh.

We have devised a two-part plan.  With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted.  She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis.  Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function.  It is more of a stabilizer and optimizes blood profusion.  This has been essential with the great fluid load of her infection and need for healing of her gut.  In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening.  Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.”  Thus Tuesday morning began with her first dose of Enalapril at half the max dose.  That night her Milrione was weaned down from .47 to .3.  Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25.  The goal is to also add on Carvedilol today and Spironolactone tomorrow.  Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.”  Spironolactone is a diuretic than helps reduce fluid retention.  Enalapril is an ACE inhibitor.  ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels.  As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile.  I am constantly, non-stop blown away by nature.  The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life.  But I cannot deny the wonder of it all.  The spectacular, pure extravagant beauty of God’s creation.  He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant.  At this point, her transplant is scheduled for March 19th.  This gives very little time for her heart to recover as these medications are not necessarily fast acting.  Before I even talked to Dr. Gardner, I knew this was likely the course we must take.  At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle.  It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month.  The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off.  More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her.  The measles virus can linger for 1-2 hours after someone infected leaves the area.  It hangs in the air, impossible to detect and thus avoid.  In a person with a normal immune system, measles can be awful.  In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer.  Time is a scarce resource in the life of a person battling cancer.  Time is a luxury.  If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks.  Being undetectable in no way means it is nonexistent.  Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken.  If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia.  Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic.  For the last 28 days her marrow has not produced one blood cell.  In her last round of chemo, her marrow began to recover after 14 days at zero.  This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced.  I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood.  Thankfully, there continues to be no evidence of blasts.  Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything.  As is simply ever the case, we wait.  We wait and see.  We wait.

Every single day feels like an impending death sentence.  Every single day a new number can indicate the tide has turned once again.  This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420.  Everyday begins with these numbers.  It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow.  Waiting is hard, really, really hard.  But I have discovered a secret, a mysterious way of God.  He loves to make us wait.  Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own.  We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope.  We have set our eye on our desire immediately before us.  But God…He is over all, under and around, above and below and on all sides.  His view engulfs our little view.  He waits.  He waits with us.  He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand.  He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face.  This is His aim.  This is His yearning, His craving, His unbridled passion, to draw us to Himself.  It is not that He is unmoved and cold toward my bleeding heart.  It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye.  It is that He has clarity of vision.  He declares that life comes solely, only, directly from being bound to Him.  Love is patient.  Translated in the King James, it says love is long-suffering.  This is the very first descriptor of love.  God is love.  God is long-suffering.  He suffers with us in our sufferings.  He endures with us.  When at last will we come to the end of ourselves and see that He offers us life.  Life abundant.  Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters.  For You have filled this space with your bounty, your halting beauty, with light unearthly.  I swoon as I fix my eyes on You.  You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me.  You satiate and I come running for more, more of you Lord!  I come weeping, weeping, calling out for mercy.  Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do.  When we join our resources together, we really CAN make a difference in the options available to children like Allistaire.   By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

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Worse before Better


IMG_2628_2“I just feel like I could cry,” the nurse said dejectedly with arms slumped at her sides.  I totally knew what she meant.  All day I felt the strain of tears pressing against the back of my eyes, hot and insistent.  With one hand I held the X-ray plate, the other pressed up against her leg, the lead apron demanding the depression of my body.  Allistaire shook with pain and the multitudes of lines and agitating chunks of plastic surrounded her.  “I can’t do it,” she cried over and over.  “But you must, you must.”  A great sigh escaped my lips as the X-ray tech went to check if the picture was sufficient.  I hadn’t even known I had mistakenly allowed my weariness to see light until he said, “Almost done mom, just one more.”

I push back, flattening the words of the podcast on how X-rays work.  Attend to the task at hand.  Disregard the weight of the lead.  Ignore the little lead heart-shaped shield they put over her ovaries for the chest X-ray and then remove for the 2 abdominal X-rays, every single day.  Forget that a CT is worth 250 X-rays.  You did not hear the suggestion to ask your dentist if that X-ray is really necessary.  Grip your child and ignore her protests, the beads of sweat on her brow and her labored breath because the pain won’t let up.  Now quick, onto the other tortures, lift her up this way and that, change the sheet and pull the measuring tape under her back to measure the distention.  Press her hands and toes looking for capillary refill.  She is exhausted.  So unremitting is the pain that she hardly sleeps and the turmoil in her gut breaks through multiple times an hour.  The pain meds are increased, boluses accumulating and new meds added.

It feels like we’re going backwards, like the past three days have never happened.  Her chest rises and falls rapidly, heaving.  Back on goes the Milrinone.  Up go the pain meds.  Increase the flow of the cannula.  Ease the burden on that left ventricle of her little heart, beating so hard with terror and with fight.  After two days of granulocytes, the neutrophils display their fury against the invader.  Their number has increased from zero to almost five thousand on Wednesday and after the second dose they are over seven thousand.  Who can understand their mysterious wisdom, how they know where to rush in haste to battle, to mend, but it shows in the incredible increase in pain and all night she has been feverish despite regular doses of Tylenol.  I guess this is the worse before the better.  It’s hard to watch and strange to be forced into the paradox of cheering and gratitude when everyone around wants to throw up their hands – what more can we do for her pain?  How high can we go with this dose?  What will calm her anxious fears?  We’re not even living it, just bystanders, constantly racking our brains to come up with what combination of meds in what doses and at what times will finally yield some peace for her.

Fourteen hours in my too-tight pants and socks that agitate the ever dry skin of my legs.  So irresistible is the scratching that streaks of blood line my ankles and calves.  I listen to the message on the phone in Ron Don about some package that has been there for days, waiting for me to pick it up, to respond to its little incessant presence.  But it is too late and in the morning I will rush again to the hospital to relieve Sten from his long night so that he can go nap for several hours.  I unbutton my pants that have pressed into my gut, unrelenting all day.  Another pair down?  Is that 3 or 4 pairs now that are too tight?  Another bit of myself goes skittering away.  No chance to exercise and some strange, frustrating need to eat.  How can I want to eat when all this is happening and all I do is sit in a room hour after hour for days?  I resist long but at last succumb to the warm comfort of the coffee cupped between my palms.  The hot liquid soothes as it goes down my throat, like a hand brushing slow across the forehead.  My hope is in this caffeine that perhaps somehow it can push back against that wall of fatigue that even recent good nights of sleep seem incapable of diminishing.

“I was wondering if it might be possible to make an exception and have James be allowed to show me how to pump up my bike tire?”  Before the ICU slammed out all other life, I had been attempting small steps to be more prepared for Obliteride.  Last years ride was fun enough to make me want to do it again, but so brutal that I knew I would be fool to not be better prepared.  My sweet mother-in-law generously has allowed me to borrow her bike, a fantastic bike made more so by its perfect orange frame.  What a strange color, orange. So bright, almost cheery, but with some sort of fiery force and determination.  It is a color to be reckoned with.  And out of the corner of my eye I would see it sitting there, locked safely in the corner of the bike racks.  I bought bike shoes I’ve been too afraid to use.  Little goals – take a picture of the pedals to buy the cleats that fit.  Check.  Get on the bike, oh but wait, I can see how to go one direction with the gears but not the other.  Thank goodness for google that yields the answer.  Tentatively, I ride, but not before I have walked my bike across the intersection.  I get to the Burke Gilman trail and feel slightly more at ease but anticipate the other cyclists speeding by yelling, “on your left!” And I try to make myself as slim as possible and hug the far right edge to give room.

Sitting on my bed later, I laugh at how tender my tail bone is. How in the world did I ever, ever get on a bike and ride 55 miles without having ridden in a whole year?  What a fool.  What an idiot.  But wow, who was that person, what carried her all those miles?  How did she say no, no to the aid car?  Was it not the pain of her own little girl?  The pain she has endured?  What is my pain, ever, ever, compared to hers?  I wrestle with my own heart, weeping and yet berating, what is my pain when I have been given so much?  She is here with me.  Who am I to let the tears come when I always see the grey eyes here and the blue eyes and the green brown eyes of moms whose hands now lay empty on their laps?  I have bounty upon bounty.  I have been given so much time that might not have been.  Such an array of armament has been brought to bear against the invader.  I have been offered unfathomable privilege to walk so far down this road of war.  How many mothers across this globe at this very moment weep and weep with limp child, eyes glazed?  But there they sit, the abundance and the ragged gaping loss.

I got on my bike last summer because I had so much to be thankful for.  I got on my bike last summer because my heart had been run through with the blade countless times.  There was ecstatic joy and severing sorrow.  I make little goals and devise little plans to get back on that bike, to acquaint my rear with the weight of my frame.  I stop the man from getting his own bike and ask, will you help me with these shoes?  I don’t understand how they clip in?  And he gives kindness to me a stranger, and he offers knowledge and extends encouragement.  Another man delays his ride home to help me figure out how to pump up the tire with the special pin, unlike the girthy simplicity of a mountain bike.  But then I flatten the tire utterly, inept at my attempt and sit feeling myself deflated despite my best efforts.  Her comes Seth again, I recognize his shoes and beard.  Again I entreat him to help me and he graciously pumps up my tire and instructs.  “What you need is the foot pump they have up in the bike cage, it would work so much better.” “Yes, but that is for employees only, ” I respond.

“Can you make an exception and allow James to help me learn how to pump up my tire?” I ask Jen in the Department of Transportation.  My hope is that they’ll allow James to teach me some basics that will help prepare me and give me a little more confidence out on the bike.  “Sorry, it’s just for staff.  It’s a liability issue.”  Before I know it, I’m gulping down barely audible sobs. The tears stream and I apologize, saying I have no idea why I’m having this response to something so small.  Before I know it I’m telling her there are some people who live, like actually live, in this building and are trapped here for long periods of time. It’s incredibly hard to find a way to exercise and all I want is some help to be able to ride my bike.  My spirit slumped and suddenly swamping waves of sorrow weigh heavy, an unconscious overlap of sorrow upon sorrow.  Perhaps it had something to do with the combination of hearing about the dangers of X-rays when I had only the day before been doing a bit of research on TBI (Total Body Irradiation), being prompted by seeing Dr. Ermoin, her radiology oncologist.  “Did you know that the Fred Hutch website says that TBI “is equivalent to being close to the epicenter of a nuclear bomb blast”?  “It does not,” he says alarmed.  “Oh yes it does.”  Only weeks before I finished reading the book, “Unbroken,” and vivid descriptions of the nuclear bomb dropped on Hiroshima.

Hiroshima.  My child.  Allistaire standing there in the gray devastation, the silent ripping of radiation particles colliding with her flesh, tearing at the fiber of her being, DNA sliced into ribbons.

I am powerless to stop it.

I wear the lead apron to protect my own flesh while her’s must simply accept again and again and again the devastation.

The waistline of my pants cut in and again I shift, trying to find comfort.  All I want is some help with my bike pump.  I am cut off from my home, my husband, my family.  I’m asking for help.  I’m ever in the position of being in need, but I’m willing to reveal my neediness.  I’m trying here people.  I grasp for help in folks passing by, going to their bikes.  Will you help me?  This person helps with figuring out how the bike shoes clip in.  That man helps with how to inflate my tires.  The first man helps again when I stand frustrated before the flattened tire despite attempt after attempt to get it pumped up.

Cancer makes you feel powerless.  Cancer isolates.  It’s just a tiny cell but somehow it seems to dominate everything.  All the forces of man are brought to bear against it, yet how it seems to ever overcome every effort.  You accept the destruction.  You say yes to the horror because you have no other choice.  You embrace, you praise, you rejoice in the weapons, pressing the collateral damage back, back to the periphery.  And the shrapnel of cancer slashes anyone in its proximity.  There is the slice of jobs lost.   There the bleeding hole of your relationship with your other child.  Time, seasons, swings of dark and light, leaves dead and leaves budding, friends living their lives and you just gone, gone.   Those too tight pants bring rage, bring silent tears you reprimand yourself for having.

All I want is to take my flesh in hand and have it yield to me.  All I want is to get my tire pumped up so I can get away from this building for an hour and breathe cold air and see something other than walls.  All I want is to fit in my clothes and not want to tear them off of me at the end of another day.  All I want is to fight back.  All I want is to ride my bike so this August, I can enjoy Obliteride.  All I want is to feel the power of my quad pressing down the pedal, speeding me away from this constricted, suffocating fight and closer to a cure.

I must give thanks to the little Hiroshima that will transpire in the basement of the University of Washington Hospital within those lead lined walls and door.  I must give thanks to the poison that decimates my child’s immune system and has left her vulnerable to these ravaging bacteria.  I give thanks because these are the forces that have taken years to understand and develop.  I fall on my knees in gratitude for the hundred of thousands of hours of research scientists endeavoring to unravel the power of cancer.  I give thanks for three years of life for Allistaire that could have never been were it not for cancer research.

I mourn and I wail because of that most wretched Hiroshima unleashed on my child, that killer not only of cancer cells, but brain and bone and ovary and pituitary.  I fall on my knees in grief for the poison that distorts the DNA of her cells and heart and skin.

I grieve years lost and rejoice in years gained.  For they are one in the same.

Obliteride is a grieving and Obliteride is a rejoicing.  It is one in the same.

This August, I will once again have the joy and privilege to participate in Obliteride which is a bike ride to raise funds for Fred Hutchinson Cancer Research Center.  One hundred percent of funds raised go directly to cancer research.

I now know how to pump up my tire.  Soon I will know how to use my bike shoes.  My bum is already getting acclimated.  As I trudge up and down, up and down the eight flights of stairs in the Forrest stairwell morning after morning, as I ride down the trail, as I feel the burn of muscles being pushed to do more, to go further, I smile.  I will one day fit into my pants again.  More importantly, one day there will be no need for Hiroshimas or poison.  One day cancer research will have found the way to fully harness the immune system and stop cancer in its tracks, without the collateral damage.  Maybe one day we won’t need a cure, because we will have found how to prevent cancer.

I’m going to keep getting on my bike.  I’m going to get on my bike in anticipation of this summer’s Obliteride.  I am going to get on that bike every single year the Lord gives me life and there are muscles that can move.  For I have much to be thankful for.  I have much to grieve.

How about you?  Where has the shrapnel of cancer lacerated your life?  Where has cancer stolen from you and caused your heart to grieve?  Where has cancer unexpectedly given you so much rejoicing and thanks that you never knew before?

One of my favorite quotes is this:

“It is the greatest of all mistakes to do nothing when you can only do little.  Do what you can.”

If you would like to support me in raising money to fund cancer research click HERE

Help me OBLITERATE cancer!!!!


If you want to join our team for this summer’s Obliteride, we’d love it!  Emily, Jo and Lysen have once again committed to another year.  Leave a comment on the blog if you’d like to join our team and I will get right back to you.IMG_0481

Weakness splintered through with joy


IMG_0478With trepidation I packed for yet another trip to Seattle.  This time it wasn’t so much fear of test results.  Allistaire seemed to be doing well and I was hoping labs, an exam and CT would confirm what appeared to be a girl full of life.  Honestly I was afraid to even get on the bike.  Not only had I not even sat on a bike since last year’s Obliteride, I had never sat on a road bike.  I wasn’t sure how I would balance on those nimble tires or have the presence of mind to both figure out how to shift those weird gears planted on the center of the frame below the handle bars and get my legs to push up a hill at the same time.  We had lots of company the end of June and into July and I just didn’t feel I had the time to train.  I mean what would happen if I only had time for a few rides – just enough to make by butt hurt real good but not enough time to get acclimated?  Surely I was stronger than a year ago, right?  I mean, I no longer live every day sustained by the steady stream of Starbucks food and I’ve been regularly hiking a big, lovely hill near our home.  I was swapping out my old mountain bike for my sister-in-law’s old road bike.  It’s all fixed up she told me.  Plus, it has these sweet bright blue pedals that match the bright blue water bottle holders.  Bright blue is well-known to increase speed and stamina.  One year prior, I got on my mountain bike with eye lids still swollen from hard crying the day before.  I didn’t know how I’d make it through those 25 miles, but I knew that the news that Allistaire only had a 5% chance at life and probably less than 6 months spurred me on all the more.  Never was I so determined, so motivated to the core to exert myself for the hope of better options for my beloved.  Cancer research was the only thing that would give Allistaire a shot at survival.  And my whole self tore open with anguished, wailing love for her.  No matter what, I would ride those 25 miles.

It has been one year since that brutal day; that day that lacerated my already tattered, bleeding heart.  I told myself two things.  Someone has to be the 5% – whose to say Allistaire won’t be in that small space of survival?  God, my God, the God who ordains every day of my life before one of them comes to be, this God is in charge of Allistaire’s life.  It is He who will determine how long or short this little girl lives.  Her life is in His hands and no cancer or other threat can overpower the beautiful sovereignty of God.  And so here we are, one year later with her life thriving.  Thus far she has been spared and while God has capacity to use mysterious means to accomplish His will, so too can He use the tangible, the measurable, the concrete.  He chose to use a clinical trial through Fred Hutchinson Cancer Research and the brilliant minds of the doctors there to offer healing from certain death for my daughter.  And I rejoice that even the tangible nature of chemotherapy is still mysterious as is the spectacular immune system.  Right there, within the concrete is incomprehensibleness, is throbbing beauty and glory!  So now I have even more reason to get on my bike and ride.  I have all the more reason to shout my thanks and endure whatever pain and challenge this bike ride might present.  It’s weight negligible like that of a shadow of the real thing.

At last the time came to depart for Seattle.  I got on the bike just long enough to lower the seat to the appropriate height.  I learned how to secure the bikes to our new bike rack and we set out.  It was supposed to be a quick stop to pick up bagels for the road trip ahead.  Somehow, however, a man in a very tiny teal car managed to not see the enormous shape of a Suburban and bike rack laden with 3 bikes, backing right into it.  I was so flabbergasted that I could not even manage to see the mangled front wheel of the bike I was to ride.  Thankfully he was an honest man and stayed to acknowledge his action and provide insurance info.  We sped westward, through smoky summer skies from countless forest fires in the Cascades.  In Olympia, Washington, at last we arrived and were able to get the bikes fixed thanks to the great guys at Joy Ride Bikes who made it happen despite their crammed maintenance schedule.

On Thursday, August 7th, Allistaire had another CT to check the status of the Cryptogenic Organizing Pneumonia (COP) in her lungs.  We then had to head over to SCCA (Seattle Cancer Care Alliance) for a blood draw and appointment with Dr. Carpenter.  I had dreaded this moment where I would have to park the beast of the Suburban, now extended by another nearly 4 feet due to the bike rack, in the cramped SCCA parking garage.  There is a fellow whose name I don’t know, but who almost always works the parking booth.  Over the many months of appointments at SCCA, we have a running joke about his juice he sets just outside his window to keep it cool.  Our connection is clearly not deep but nevertheless joy to have familiarity with this other human, he a lovely Eritrean man.  It only took eye contact for him to wave me into a reserved parking spot, vast in its proportions.  I didn’t even need to speak a word and with a wave of his hand he provided for one of my bright points of anxiety about this trip.  Thank you Lord I repeated.  Thank you for caring for even the smallest detail of my need.

We arrived early in order to get blood drawn in time to have results back by our appointment time.  Allistaire’s face turned red as she began to scream in fear of what was to come.  Solveig looked terrified and wanted to flee the room.  I forced her to stay, to allow the sound of those cries and the look of terror on her sister’s face to enter into her.  How little she knows of her sister’s suffering, how intangible it has been to her.  Here Solveig, expose your heart to the biting pain of your sister’s pain, know in very small part her reality and thus your understanding will expand and your compassion grow and one day when you look back upon these days, perhaps you will see them not only from the perspective of what it cost you, but what it cost your sister, what it cost me, what it has cost us as a family.  I pray then you will know that I would have never left you had I not been forced to.  When you see the closeness I have with Allistaire, I so hope you understand it is because I had to wrap my life around her’s with all the strength I possessed.  She was surrounded, death pursued her and it was all I could do to try to shield her.  Thousands upon thousands of times I looked at her face wondering how many more times I would be able to do so.  I greedily took in the curve of her cheeks and dimple, the color of her blue eyes and I craved yet more of her because I was desperate to not have her ripped from my arms.  I praise God I have never known that sort of threat on your life Solveig, but it has also had the effect that I have not cherished you as you deserve.  My dear love, my first-born, please forgive me and find in your heart release for my loving you differently.  I never intended to.  And I fight now to gain that closeness with you that comes so easily with Allistaire.  I seek to gaze into your beautiful gray hazel eyes and watch the adorable way your lips move over your toothless gap.  I force myself to slow and take in the wonder of who you are, how it is possible that such a creature, so vast and individual and beautifully creative could have actually come from my flesh.  My mind contorts to try to fathom that your eight year old limbs were ever wee enough to have grown inside of me.  I listen to your joy as you finish book after book, consuming stories with the gift of your amazing imagination.  While I have had to focus so long on your sister, you have grown taller and taller and more and more your own person in the world.  I love you dearly Solveig Kailen and I pray the Lord will help me to make that known to you sweet child, that you would go out into this world knowing how very wondrous you are and dear to me.  I have to trust the Lord with this brokenness as much as I must choose to entrust the brokenness of Allistaire’s flesh with Him.

Without even fully entering the exam room, Joan Suver, the amazing P.A. that works with Dr. Carpenter, swept in, pale yellow gown flowing and her voice trilling that the CT looks great.  If results were going to be announced in such form I figured I might as well blurt out my request to know how the labs were.  Great, great, she said.  The CT showed no evidence of COP.  Her white blood cell count 8.32, hematocrit 43, platelets 212, ANC 6,830, and liver functions tests 32 AST and 21 ALT.  “Well she has a few freckles on her face,” I said tentatively, knowing her skin would be scrutinized for GVHD and failure to protect her from the sun.  “Oh, she looks nice and white,” Joan responds.  I sighed relief at good results and the freckles being allowed to only be signs of cuteness, not lack of protectiveness on my part and danger for Allistaire.  Dr. Carpenter later entered with a question. uttered with laughing voice, “Did you have a transplant?”  Allistaire just giggled and rolled around on the crackly paper atop the exam bed.  She mostly obliged with the exam and went through the required maneuvers such as criss-cross-applesauce and my favorite, the namaste pose where both palms meet and elbows flare out perpendicular to the torso.  All these positions check for evidence of skin and joint tightening which can be signs of GVHD.  Once again, it was stated that having had a peripheral stem-cell transplant, Allistaire is at highest risk of chronic GVHD.  “For how long,” I plead.  Apparently she is at risk for up to 3 – 5 years post transplant to still develop GVHD, so no evidence now is no guarantee she is in the clear.  Nevertheless for the time being, she looks remarkable.  So pleased was Dr. Carpenter that the conversation about future appointments was extremely low-key.  He feels no need for her to have another CT to check her lungs unless symptoms show up.  We talked about her next appointment being either around Thanksgiving or New Years – it’s up to us to decide.  So amazed by this release from constant doctor appointments and trips to Seattle was I that I forgot to even ask about blood tests.  When it occurred to me, I tracked him down in the hall.  “Does she still need monthly blood tests?” I asked with eyes wide.  “Oh, no, I don’t think so,” came fast his words.  Then, with head cocked to the side, he tells me just to pick a date to have her labs checked halfway between now and the time he will see her again.

We left the 6th floor and I sort of just floated out, mouth inwardly gaping at our continued good fortune.  We had intended to explore the gift shop for a few minutes at Allistaire’s request; this a well entrenched tradition of ours.  And then there was squealing with glee and I jerked my head to look for the source.  There coming out of the bathroom, were our friends from Bozeman that we met through the Kid’s Support program provided through Cancer Support Community.  I knew they were in Seattle for Megan’s follow-up CT for lymphoma.  I knew that they had been given the incredible gift of clear scans.  What I didn’t know is that Megan was at that moment scheduled for her very last blood draw followed by having her line pulled.  What joy it is to see people from home, people who inhabit both worlds of Bozeman and Cancer.  I had to hold back my hand from rubbing the fine light brown fuzz on top of her gorgeous head.  My cheeks hurt with a smile that would not let down from joy that would not stop.

After a fun day hanging out with Emily, Jo and Lysen and the girls staying with my parents, it was at long last, time to get on with the business of Obliteride.  Emily was giddy with excitement and repeated how great the course was.  With joy she relayed that we would go down Lake Washington’s west side, around the bottom in Renton, out to Issaquah, up to the I-90 bridge, around Mercer Island, across the I-90 floating bridge and back up to Magnuson Park where we began.  Only then did the terror of the actuality of those 50 miles really start to sink in.  I was very, very familiar with these landmarks and knew how long it takes to drive that route, I could not imagine how I would make it all that way on a bike.  Oh, and the course was actually 55 miles rather than 50 I learned – that’s just what they had to do to make the course work.  Oh dear.  Oh dear.  This could be very bad.

On Sunday morning, August 10th, we set out from a friend’s house a few miles from Magnuson park.  This was my chance to get the feel of my bike and figure out how the gear shifters worked.  My dear friends knew my fear and continued to encourage me that they were here to do this with me.  I cannot overstate how indebted I am to Jo, Emily and Lysen for making this ride with me and being an incredible support.  They sacrificed time, money and the fun they could have had to ride by my side, supporting me, our family and  the furthering of cancer research at Fred Hutch.  Such amazing women I can count as dear and close.  We rode the first 14 miles to the first aid station rather uneventfully.  I realized quickly that if I was going to make it to the end, I had to maximize my momentum on the down hills.  At one point I somehow failed to notice the tide of bikers in front of me turning right.  Somehow I missed the police man too as he waved out our direction.  I blasted right through the line of cyclists, narrowly missing the back wheel of one and had to make a fat U-turn, losing all speed as I approached the hill I should have glided up.  I confess I did not delight, as I could have, in the spectacular views of Lake Washington as we rode along.  I was intent on making my legs turn.  At our first stop I did not choose to indulge in the gummy bears and chips and such.  Why would I need those?  After using the port-a-potty, and determining to try to enjoy myself more, we set out.

The path out of the aid station excited immediately up a steep hill.  As I struggled up the incline, I spy Emily crouched down at the top, intent on getting my photo.  “What are you doing that for?” I gasped.  “So you won’t forget this hill,” was the response.  As though I could.  We continued on south along the lake and as we rounded the bottom and headed back north on the east side, I began to feel cramping in my quads.  Lysen generously offered me her water bottle full of electrolytes.  It soon became clear that not only was I not physically prepared for this ride, I was ignorant of what one does to prepare to endure long distance.  I knew nothing of electrolytes and goo and salt and all that stuff that could help get me through.  Not long later I was mystified to feel my quads turning to concrete.  It was such a strange sensation of them absolutely losing their ability to function.  Can you tell I’ve never really had to fight long to get my body to do what I need it to do?  Around the point on the Lake where the enormous Seahawks training facility juts up out of the trees, I sat on the side of the trail while Jo and Lysen massaged my quads with the mysterious glory of BioFreeze and I chugged more electrolytes.  Finally my quads released their rage and we went on.  We agreed that at the next aid station I would tank up on all those essentials laid out for our consumption.  I was slow enough that Lysen and Jo had the time to stop for some much-anticipated blackberry picking.  Jo had rigged up a cup on her handle bars for just such an occasion.

The third aid station was situated just at the top of the first segment of the I-90 bridge on Mercer Island.  There I ate salty chips, gooey gummy bears and even succumbed to a banana, my least favorite food, all in the attempt to pack in all those mysterious elements my body needed to keep my muscles functioning.  I felt good as we departed but was again amazed at how even the slightest incline felt ridiculously more difficult than it seemed it should have.  At times my friends rode on ahead of me to give me more time to anticipate a turn or make use of my speed down a hill.  The view was beautiful as we circled Mercer Island but I soon became very, very ready to get off the island and closer to our finish line.  As we headed up the western side of the island toward the second segment of the bridge, there appeared in my view a long hill, not so very steep, but so very long.  I saw a few others walking their bikes and I determined I would not walk, rather I would take it in the easiest gear; surely that would work.  But as Emily lied, yelling out she saw the top of the hill, I felt that now familiar sensation of my legs cramping up into rock solid forms.  At one point I rode so slowly I was amazed the bike stayed upright.  I could not believe I was riding slower than it seemed I could have walked.  It came to me that I would have to walk the rest of the way up the hill, my quads were about to seize up.  And then as I set my right foot down, it locked up solid.  In an attempt not to fall over, I set my left foot down only to have that leg seize up as well.  I looked helplessly down at my legs unable to remain standing, but utterly incapable of getting myself off the bike to sit down because my legs would absolutely not bend.  I called for Jo and Emily who were close by and somehow I found myself sitting in the hot gravel alongside the road, my legs so tight that the heels of my feet could not even rest on the ground.  I cried out for the BioFreeze, which with blessed speed Emily and Jo began vigorously slathering on my thighs.  Cars and bikers alike stopped to see if we needed help.  I suppose it looked as though I had crashed, so hastily was my bike discarded.  At one point I asked Emily to bend my legs, but the pain was so intense I made her stop.  Eventually the BioFreeze started to take effect and I grabbed each ankle, forcing my legs to at last bend.  Throughout this agonizing few minutes I had the sense of having an out-of-body experience.  I really had never imagined this sort of thing happening.  I mean, I knew the ride would be hard, but I figured with a road bike and being a bit stronger, it would actually turn out better.  I was mortified at how horrifically weak I apparently was and couldn’t help but laugh at how outrageous the whole thing was.  I felt bad for my weakness so impacting the ride that my friends could be having, but I was also so thankful for their generous presence in the face of my absurd incapacity to do what I had determined to do.

We made it to the top of the hill walking.  Emily called ahead to the next aid station to ask them to set aside some BioFreeze for me, as we had used up all of our supply.  She hesitantly told me they also said they could send an aid car.  NO WAY!  No way!  There was absolutely no way I was going to get in an aid car.  Somehow, someway, I was going to finish this thing, even if I had to walk the last 17 miles.  Emily generously offered to let me ride her new amazing bike, thinking it would be easier on me than the old mint green Bianchi.  We didn’t have the tool necessary to lower her seat so we decided we’d switch at the next and last aid station.  As we descended down the hill and onto the floating bridge portion of I-90, I felt my quads ever on the verge of absolute cramping again.  I wanted to turn my face to the glorious wind sweeping off the winds of  Lake Washington to the north, but all I could think is that I needed to get across this bridge and make it to the aid station on other side, at the top of another long hill.  Once I sensed my quads, hamstrings and triceps all in cramping revolt, I got off and walked the rest of the way across the bridge.  Eventually the metal clicking of Jo and Lysen’s clippless shoes joined my slow progress forward.

Turns out there was no BioFreeze left at the aid station, but I forced down more chips and another wretched banana while Emily adjusted the bikes upon which we planned to trade places.  As my contact lenses conspired against me and dried out so I could not see clearly, I tried to both make the most of the speed gained on each hill and not crash Emily’s new bike on some unseen crack or hole in the pavement.  At long last we were back across the University Street bridge and now I knew the streets intimately having lived five years of my life at the University of Washington and then all those months at the hospital and at Ron Don.  It was sweet relief to see a dear and familiar part of the Burke Gilman Trail.  We crossed 41st street, just on the north side of Ron Don.  How strange it was to exist in this same physical spot exactly one year later.  It was from this crossing we set out to Obliteride a year ago.  How many times had I waited for bikers to pass before crossing over this line in the months we fought for Allistaire’s life.  It was surreal.  As we grew closer to Magnuson Park, my emotion, pressed down in order to focus on the physical challenge, now welled up.  As much as I yearned to be done with this ride and off this bike, I yearned more to see Allistaire’s sweet face and hold her tight.  What gift it was.

I had felt so very weak a year prior.  I felt beaten down, crushed.  I thought I was stronger now, but clearly, almost not strong enough to make it to the end.  Were it not for my sweet, patient friends and the grace of God, I would not have made it.  What takes an average of five hours, took me seven.  Part of this journey, a big part really, has been about learning to accept and come to peace with being weak.  Weakness was always something I reviled and fled from.  I would go to great lengths to avoid those things that put my weakness on display, like playing volleyball which might seem insignificant but is just one marker of my desperate need to feel in control, not stupid, not ugly, not weak, not a burden on others, not useless.  I’ve worked hard in my life to excel at what’s in front of me and I have unknowingly worked hard to protect myself from situations where my confidence would be challenged.  In many ways I have been a fool.  In many ways I have just been an average human, weak and made of dust, temporal and flawed.  I have sought to find a foothold here and there to steady my life, to keep my head up, to keep from sinking.  I have tried to pull in towards myself, to gather those identifiers that might buoy me up, that would color my life as worthwhile, as admirable.  In the last two and half years, these footholds have given way.  I have no job, no career, no assets, less beauty, less awareness and intelligence about the happenings in the world.  While some have offered words of what a great mom I am, I know my propensity toward anger and impatience.  I am well aware of my failings.  I look around, wildly at times, searching for those stones upon which to stand, upon which to build my self-worth, my identity.  My panic comes sometimes as anger, sometimes as tears that won’t stop.  As I stand in the circle of beautiful, intelligent, accomplished women at Solveig’s school at pick-up time, I feel grossly inadequate.  And I see Him out of the corner of my eye, and I know exactly what He is saying to me.  He is calling me yet again, to at long last, just rest in Him.  There is no panic in Him as my strongholds are torn down bit by bit.  He is not anxious as He sees me sink down.  He stretches out His hand and calls for me to grab hold, to stake my security in the one and only thing, being actually, that will never give way.  He sees me utterly as I am.  He is not fooled.  He is not enamored by my attempts to look good.  He loves me just because He has chosen to and because mysteriously, miraculously and gloriously, He has made me to bear His likeness.  My identity rests solidly in Him, on the claims He has made about me.

So as I sat on those hard, hot rocks on the side of the road, forced to accept the help of my friends, in a most unflattering way and later as I succumbed to a massage of my weary muscles, glutes included, I gave in to my weakness and received care and kindness.  I am finding strange delight at being at ease with my limits, my finiteness, me neediness, my weakness, my unloveliness.  It still absolutely cuts against the grain of my natural self, but I am discovering the power and weight blown out of my fear.  I am stripped and found weak, and yet I stand.  I stand.  I stand with head held high because He is my foundation.  My Father is my strength.  His power is truly made perfect in my weakness.  It is mystery.  It is beauty, as of another world.  I grasp words to put outline to the view the Lord is showing me.  While Allistaire thrives, I know at any moment the ground could crumble again.  I still struggle with the sin of my anger, at the many ways I tear down Solveig when I should be the first person in her world to build her up.  I have shame over that failing.  I still have no work besides that of a housewife.  I am still unclear on the way ahead.  My life is not all cleaned up and pretty.  It is in many ways ragged.  I often still hit that wall of panic, of the suffocating, drowning sense that this is not how I imagined my life, this is not what I want my life to look like, this is not who I ever wanted to be.  There is so much outside of my finite control and want to scream and cry all at once that I just can’t seem to fix it.  But He is ever there, calling my name, extending His hand, soothing my brow, calling me to rest in Him, to trust Him, to give way to His sovereignty over my children, my husband, my days and my heart.

I want to be the strong one, the one to forge ahead.  I want to be in control of my life.  I want to have the capacity to determine the course of my days.  I would far prefer to be the one to give than the one who must stretch out palms to receive.  This year’s Obliteride was and will be quite memorable, epic even perhaps.  Not in the way in which I would have wanted, but really, in a glorious way that highlighted what needed most to be highlighted.  That we are people frail, at risk for all sorts of brokenness.  My sister’s were the hands and feet of Christ to me, caring for me in my weakness.  And in my weakness, I gave all that I had to give, which was little, but all that was necessary, and even in that there was beauty.  Beauty and grace marked the day.  And thanks, thanks and praise for the bounty that I celebrated having the joy to receive.  It was sweetest, overwhelming joy to hold my little girl tight in my arms, to know it could have been different, so very different.  It is a foreign fragrance, as of another land, to be at rest with weakness as I rest in my God, to be in need and to receive so abundantly.

Thank you to all who gave so generously in my name to Fred Hutchinson Cancer Research Center.  I am indebted to you as I am to those scientists and doctors who tirelessly endeavor to find better ways to put an end to the ravages of cancer.  And if you can believe it, despite it all, the whole experience has made me excited about riding again next year and the next and the next.  I’ve actually started imagining the fun I could have if I had a road bike and got out regularly, barring the snow of course.  I might be able to actually enjoy the scenery next year.

If you’d like to give to further cancer research but fear you’ve missed the deadline, fear not!  The cutoff date to give to Obliteride isn’t until September 30th.  So far, $1.65 million dollars has been raised, but this is $600,000 short of the goal.  So feel free to click HERE to give to Obliteride in my name.  Remember, another way to give to Obliteride is to order a sweet Smack Down Shirt.  Your last chance to get a Smack Down shirt ends this coming Friday, August 29th.

There’s yet another amazing way to give.  My sweet and hard-core brother-in-law Bjorn, is running the Cascade Crest 100 – a 100 mile race today, August 23rd, in the Cascade mountains of Washington.  Yeah, you read that right – one hundred miles.  Part of his motivation to run is to raise financial support for the Ben Towne Foundation which specifically conducts pediatric cancer research in Seattle in collaboration with Seattle Children’s and Fred Hutch.  One hundred percent of all donations to the Ben Towne Foundation go to directly to fund pediatric cancer research.  You can click HERE to go to Bjorn’s fundraising page and give.  You can also watch a short video of Bjorn HERE as he articulates his motivation to run and you can track his progress in the race HERE.

Lastly, following are a whole bunch of fun pictures from our Obliteride weekend.  After that I have included some of the harder pictures from a year ago.  The last picture is of Allistaire just a few days ago, making impressive progress on her salad training.  She actually declared that she loves tomatoes and cucumbers and cheered when she was served up a plate of salad for dinner.  Shock and awe.  And thanks 🙂

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shirt_bigYes, there was once a wee lass who got cancer. Who’s ever seen a bald kid except on those billboards? But there she was, little but fierce, fighting a foe who nearly took her down. But in swooped some sweet research from that powerhouse, Fred Hutch, who gave her hope for a cure and a chance to fight with the most glorious of weaponry. The battle raged on and on but she emerged – she is alive and thrives.

Do you know a baldy-top? Is there a face you behold in your mind, or in the mirror, whose life has known this fight? Far too many of those dear faces are gone. Far too many are not just touched, but ravaged by this villain, cancer.

Wanna give cancer the SMACK DOWN? Wanna join the fight to put more effective, strategic, targeted weapons in action against cancer? Do you want to obliterate cancer?


Buy a SMACK DOWN T-Shirt today!

$20 of every shirt goes straight to Obliteride which is Fred Hutchinson Cancer Research Center’s fundraising bike ride

100% of all funds go straight to cancer research!!!


My dear friend Emily, who rode with me in Obliteride last year, along with her husband Dave, have a screen printing business (Media Fly Screen Shop) and are generously crafting these shirts for only the cost of materials and shipping!  That means 100% of the profits from T-Shirt sales go directly to further cancer research at Fred Hutch!  Awesome!!!

Order your shirts by next Tuesday, July 29th and they’ll be on their way to you by August 4th, just in time to rock your support of cancer research on our Obliteride day.  Orders for a second printing will be taken through August 29th for a shipment date of September 2nd. Oh, and by the way, there are kids sizes too and won’t they just look so cute puttin’ the SMACK DOWN on cancer?!!!


Get inspired – check out just one example of what Fred Hutch is up to:  “Could this little thing be the next big thing:  Hope for a world where tiny T cells and other immunotherapies eliminate cancer without side effects”


Do it for all the baldy-tops we love : past, present and future!IMG_3588

Let’s Obliteride – Again!


IMG_9626When I was a student at the University of Washington, I took Chemistry for three glorious quarters.  I remember sitting on the edge of the wooden lecture hall seat, entranced as my professor pointed out that there would be no life on our planet if the water molecule, H2O, was not bent, but instead linear.  By being bent, the water molecule was polar and thus acted like a little magnet, sticking together with a whole bunch of other water molecules, allowing vast amounts of H2O to remain in liquid form.  Ah, the wonders of water.  I sat with mouth obnoxiously open, in awe that such a simple thing was the difference between life or no life on our planet.  Another day I ventured up to the fourth floor where the entire building seemed to shake with the vibration of exhaust hoods.  I peeked into tiny lab windows to see glass vials and beakers and strange glass labyrinths.  I salivated trying to take in the fantastic complexity of the Molecular Pathways poster in the hallway.

Petri dishes and slime molds, bunsen burners and little pins thrust into wax to hold open the chest cavity of a frog.  All sorts of strange images enter my mind when I think of scientific research.  I can see odd folks milling around in white lab coats, hunched over microscopes and clicking the keyboard to record data.

Here is another image.  Big blue beautiful eyes, wispy blonde curls of hair, a line of little white teeth set in a grin – dimple on the right, hands still chubby and small.  Then listen, hear that sweet, wee voice with wonder mingled in and the declaration that those same blue eyes have just now spied a red-winged black bird.

Research is what has saved Allistaire’s life, not just once, but over and over again.  You scrub the end of the line coming out of her chest with an alcohol wipe for 15 seconds and you let it dry for 15 seconds before you enter the line, because research has shown this is the most effective way at killing any bacteria that could  lead to a line infection which could lead to serious illness or even death.  Cytarabine, fludarabine, mitoxantrone, daunorubacin, decitabine, busulfan, clofarabine, azacitadine – super weird words, absolutely yes, but also crazy amazing discoveries from plants and sea life and dirt that eventually were shown to be effective against that wretched killer, Acute Myeloid Leukemia.  But how much do you give and how long and in combination with what other drugs?  Is one round of chemo enough or should we risk burdening that little heart pumping blood again in hopes that the cancer is really, really gone this time?  And what of her liver and kidneys and the other parts of her flesh she needs to keep her alive, how do we protect those and kill the killer?

Research may seem abstract.  I mean really, even cancer seems abstract.  What is it anyway?  Most of the time you can’t see it, so how can you really die from it?  I’ve seen cancer.  Cancer is when your child sleeps 20 hours a day and turns ghost white because almost all of her red blood cells have vanished and been replaced by the insatiable multiplication of cancer cells.  Cancer is a boy’s face warped and deformed from the massive pressure of neuroblastoma tumors pressing against the skin.  Cancer is the girl in the wheelchair, unable to walk because both legs have been sawed off – a gruesome trade to try to save her life.  Cancer is that person you hear is a teenage girl but you can’t tell because she has wasted away and her features have become featureless, her skin covered in a barrage of sores and bruises.

Research takes that white, lethargic little girl, unwilling to walk, and turns her into a feisty force to be reckoned with as she whirls around the Oncology Unit on a bike and grows old enough to carry on a conversation with you and play school with her big sister.  Research discovers that you can kill those horrifying neuroblastoma cells with re-engineered T-cells from the child’s own body.  Research allows the loss of legs to be a worthy trade-off because the spirit of that girl shines bright in her eyes and her smile beams as she races down the sidewalk, gloved hands on wheels.  Research is what gives the mom who lost her daughter, hope that more girls will be able to go to their prom and graduate from high school.  I have seen research – giving life and breath to faces held dear, no longer abstract but vividly tangible.

Research is what I’m asking you to consider giving your money to, because really, I’m asking you to give countless people a better chance at living .  It may be your child.  It may be the shocking news on your anniversary that your beloved wife has cancer.  It may be your father gone far too soon.  It may be you – you who have joys and plans and hopes for a life long-lived.

It has almost been one year since I sat at the conference table across from Dr. Dahlberg, trying to hold back the tears as she explained that Allistaire had less than a 10% chance at survival and that in ordinary circumstances there would be nothing left to offer her.  It could have been as simple and unfathomably monumental as it being time to take her home to die.  But there it was, Clinical Trial 7617A – an open door, a chance at life, a gift that would cost $1,100,000 and ultimately, sustained Allistaire’s life.  The tears were hot from terror and streamed down a face full of joy and smile.

Fred Hutchinson Cancer Research Center decided to invest in a study that would look at the effectiveness of the anti-leukemic effects of combining the chemotherapies, Busulfan and Clofarabine.  The study had only opened about a month prior and would end up closing not very many months later.  Allistaire’s transplant succeeded in two major ways.  It cleared all of the detectable leukemia from her marrow and in so doing made way for the wondrous mysteries of someone else’s immune system to enter into her body and begin a gorgeously complex fight against her foreign cancer cells.  When tiny traces of cancer was found in August, it was the team of doctors at Fred Hutch who fight adult AML that were able to recommend a chemotherapy that had potential to fight back the cancer while Allistaire’s new donor cells could fully mature and mobilize against the few remaining cancer cells.

On August 9th, 2013, I was told that because there was still cancer after her transplant, Allistaire had a 5% chance or less to survive and more than likely, would live no more than 6 more months.  Of course, that was based on the most current data.  You see, giving someone a bone marrow transplant without being in remission, had almost never, ever been done.  This was new territory.  This was a landscape in which there weren’t statistics to color the details.  Anything was possible.  Why?  Because of research.  Because people like you, can give money to fund the most amazing and promising research you can imagine.

Actually, most of us can’t imagine it, because it is simply too complex and amazing.  But there are teams of doctors at Fred Hutchinson Cancer Research Center who spend all day long, every day, trying to imagine the possibilities and then put them into action.  And these are not just socially awkward folks who sit in a lab all day long.  There are probably those and thanks be to God for them, but they are also the doctors who have morning after morning bent down in Allistaire’s hospital room and joked with her and cared for her while also attending to the details of her flesh.  These are fellow moms and dads who cherish their own children and who allow that love to fuel their passion to keep pursuing cures for cancer.

On the morning of August 10th, 2013, the day after the very worst news of my life, I got on my old crusty, 1995 mountain bike and rode 25 miles in Obliteride.  Obliteride is a bike ride put on to raise funds for Fred Hutchinson Cancer Research Center, 100% of which goes directly to cancer research.  I road with my dear friend, Emily Vahey on one side and my sweet, sweet sister-in-law, Jo on the other.  It was quite an incredible experience to gather with hundreds of other people and ride for the people we love, known and unknown.  Together, the three of us raised about $13,000.  All in all the ride raised $1.9 million dollars for cancer research.  Though my eyes still bore the marks of hard crying the night before, it was a day also of joy and hope for what can be accomplished when people rally together for good – for the hope of a day when the monster, cancer, will be defanged.

Thank you SO much to each of you who so generously gave last year to Obliteride.  For some of you it was a tangible way to show Allistaire and our family love.  For others, it was a way to give thanks for your own lives spared because of the virtues of cancer research.  And for yet others, it was a memorial for someone dear to you already lost.  For one woman, it was her way of loving her grandchildren, a way to give them a better chance at life in the future.

Giving money to Obliteride to further the cancer research at Fred Hutch is a tangible way to love.  Yes, it is beakers and strange whirring machines, but it is also that sweet little goofy face in front of you, it is your mom’s face and your own.

This year I will be riding the 50-mile route which goes across beautiful Lake Washington and have made a commitment to raise at least $1,250.  My dear friends Emily Vahey, Lysen Storaasli and sister-in-law, Jonell Anderson are also riding with me and have made the same fundraising commitment.  So if you know me through one of these fantastic women folk, please donate directly to Obliteride under their name and help them reach their goal.  If you would like to support me in Obliteride and help OBLITERATE CANCER, click on the blue link below:

Help Jai Obliterate Cancer!


I finally did it! It’s time to Obliteride!


Poster-1Just down the street from the hospital there is a parking garage being constructed and on the elevator tower, there has been a gigantic orange sign that says, “Obliteride.”  What is that I wondered?  Well, ever since then, I have repeatedly encountered the orange flyers and posters for Obliteride.  Part of what drew me to it is the fantastic word, “Obliteride,” clearly meant to be akin to the word, “obliterate.”  Anyone who knows me, knows I am prone to hyperbole – I love words and the bigger, fatter, more shiny or weighty – well – I need really big powerful words to convey how I feel and still they are usually insufficient.  Anyway – obliterate – that is one hard core word!  And what is Obliteride?  It is a fundraising event put on Fred Hutchinson Cancer Research to raise funds, 100% of which, goes to cancer research!  It is a bike ride that gives participants – both riders and supporters – the chance to tangibly come together to further the amazing, wild research necessary to learn about the human body, learn about cancer and figure out how to stop the death and wreckage caused by cancer.

So after at least a month or two of it nagging the edges of my consciousness – because I knew from the beginning I had to do it – I finally signed up.  I took the plunge and registered myself to ride a bike 25 miles on Saturday, August 10th, 2013, to help do a small part to end cancer.  I know what many of your are thinking – not a big deal – 25 miles – not far.  I get that but this is not something I do.  My last name may be Anderson, but unlike the rest of the Anderson clan who thrive on physical exertion and who delight to compete in nearly any physical event – I do not just shy away from such things – I flee.  There are things I’m good at in life but athletics of really any kind has never been my thing.  But that’s not the point I tell myself – the point is that I have my mountain bike from 1995 when I was a college student and I’ve got two legs.  I don’t have much time to “train,” and my butt will probably need a transplant when I’m done because it won’t be accustomed to such activity – but I’m going to do it.

Here’s the other hard part – it is a fundraising event and oh how I just hate asking for money or trying to sell anything – again, not my giftedness.  But, this IS something I believe in!  One hundred percent of every dollar raised goes directly to cancer research at Fred Hutchinson – the very place that has pioneered the bone marrow transplant that MY child needs to live!  This is not some abstract good – this is Allistaire Kieron Anderson born March 6, 2010 to a mom who prayed and prayed for her life to come to be.  This is my bright blue-eyed girl with the furrowed fierce brow.  Her name is a derivative of the name Alexander, which means “defender of men,” and yet she has been the one who has needed defending and protecting.  This is MY child that came from my body!  And you know what, you never know when YOU will need to be the recipient of such good – of such research!  You don’t know when it may be your flesh or that of your dad or your child or your sister or your dearest friend, whose life hangs and hopes for a clinical trial that will give them hope for one more try.  This is not abstract good  – this is tangible.  I know, I know – what does this little bit I might raise really do?  Well I don’t know because dang is research and cancer care expensive stuff – but all the more reason for us to come TOGETHER to put a dent in it!  You never know when the next discovery will come that will make a sweeping difference.  I know the name and face of a girl from here at Children’s – I know her parent’s faces and voices – they are headed to Philadelphia to be apart of the crazy, wild, amazing clinical trial involving the genetic re-programming of a disabled HIV virus to re-program the T-cells of the patients immune system to identify and kill cancer cells.  The first child, Emma, just received this new, experimental therapy this past fall.  You have to check it out!  It is amazing!  You can click on this link to learn more about it.

Right now I’m thinking, “Jai, you’re supposed to keep this short and to the point.” But good grief, how lazy and prone to instant gratification are we?  This warrants more.  I used to want to be a doctor.  This idea was prompted by something so compelling I saw in scripture – Jesus Christ first loved the people in His life by caring for their tangible needs – before He spoke to them of their need for spiritual rebirth, for salvation – He gave them food, He took away their blindness and gave them sight, He gave the lame the ability to walk, He cured the sick of their disease!  We who know the Lord, know that the state of our spirit matters infinitely more than the state of our bodies and yet, the God of the Universe came in flesh and cares for our flesh and calls us to do the same – to love tangibly, not just in word, but in deed!  I cannot cure cancer!  I don’t even get what T-cells really are much less have a clue how to reprogram them to identify and kill cancer cells – but, there are people who spend all day long in a lab, for years, patiently seeking to understand the wonders of chemistry and biology, for the purpose of finding a way to undue brokenness!  We know that ultimately, we will continue to have sickness and death until Christ returns, but we endeavor now and here to expand His kingdom of life and to love, to love and cherish the flesh that holds the spirit – we bearers of the image of God – this is why we are precious and this is why we fight, fight, fight for physical life. These bodies matter because they do house spirits!

Alright, if you’re sufficiently pumped up to support me on this ride to obliterate, this Obliteride, please click on the blue link below to contribute to this endeavor.  My fundraising goal is $1,000 which only equates to 100 people giving $10 – that’s nothing – I bet we could do even better than that!. *** So in only 5 hours you beautiful folks out there have helped my exceed my original goal – so I kicked it up to $5,000.  Also, my dear sweet friend of nearly 20 years, Emily Vahey, has just signed up to also be a rider in honor of Allistaire – she too needs to meet her $1,000 fundraising goal, so please consider giving to her first to help her reach her goal!  We will ride together!!

Help Emily Reach her Goal of $1,000 TOO!!!

“I want to help Jai obliterate cancer!”