Tag Archives: Seattle Cancer Care Alliance

Nov18

Dread, Hope, Dread

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

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

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

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

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

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

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

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

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

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

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

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

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

Explanation of TCRs from the Juno Therapeutics Website

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Nov10

Roadmap

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IMG_1466I’ve been to Target several times since leaving home.  I keep thinking of things I’ll need in the hospital to streamline my life.  Living in a hospital takes strategerie.  Now, if you’re there for a few days, even a few weeks, you can just sort of role with the discomforts, annoyances, and inconveniences of hospital life.  But that’s not what we’re up against.  We are facing months and months of living in the hospital.  When Allistaire relapsed the first time, she lived in the hospital for one hundred and forty-eight straight days.  I was there for most of that.  And living in a hospital is like living in a foreign country where things are just done a different way than at home and you can’t access the things you have come to expect and need.  There are awesome upsides to hospital life, like – I never have to clean the toilet or buy paper towels or launder my sheets.  I have free, crazy fast wi-fi and more cable channels than you can imagine.  But on the flip side I have to accept that people will be coming in and out of our tiny little space all day and throughout the night.  There is almost no privacy.  One learns to sleep on strange pull-out-couch-beds with lights, clicking sounds, beeping, alarms, frequent calls for your attention, for assistance.  In the morning, I gather my things in a Trader Joes’s bag and walk the 100 yards down the long white hall to the showers wherein I don my purple plastic flip-flops.

It’s weird how normal all of this feels.  The last two mornings Allistaire and I have enjoyed the quiet of the Hem/Onc infusion clinic on the weekend.  The normal bustle of the hospital is replaced by emptiness and calm on Saturdays and Sundays.  We go check in with the nurse who must “lay eyes on her,” before she can order up the chemo from Pharmacy.  We know our usual rooms we are assigned to because Allistaire is in contact isolation until the end of time, due to having VRE (Vancomycin Resistant Enterococcuss).  We joke with the nurses, many of whom we know.  The nurse practitioner drops by to say Hi and says how sorry she is, with tears in her eyes.  It’s all the same, the same routine, round and round.  We have been here countless times before.  There is odd comfort in that.  But it is a comfort that also leaves you agitated because it all still feels so fundamentally wrong.

Allistaire has been doing alright, often cheery but no longer her normal self.  She’s getting more fatigued, cries more easily and can become overwrought by the smallest thing.  She has intermittently been in pain which mysteriously comes and goes.  On Thursday when Sten flew home, I had to give her four doses of oxycodone to address her strange back pain.  Now it’s gone.  At another point she suddenly bursts into tears that her foot is hurting and she struggles to walk.  The last few nights she has woken me four or five times with crying in her sleep.  I go to her and ask if she’s in pain; she is disoriented and says No.  On Friday morning, she had surgery to place her Hickman Line.  It hurt my heart.  Her body has no massive scars but rather a myriad of small ones, four biopsies of leg, back, lung and arm, nineteen bone marrow tests has created a scarred dent on the lower right of her back, four scars on her chest and neck from the previous two Hickman’s and now this new one with its tender wounds.  There hang those handy but wretched “tubies.”  All these outward signs of the fight within.  I’m finally getting over my denial.  Her hematocrit had dropped to 32.  I was finally ready for her to get chemo.  I finally unpacked my bags last night.

Once again, our life seems to have been shattered and in a disarray.  I knew this could happen.  I knew that if I took Allistaire to the doctor, it could be like willfully walking off a cliff.  So I stalled and I hoped it was all nothing and would simply go away.  The last two weeks have been a whirlwind and simultaneously brutally slow in determining what lies ahead.  Because, man I just want to know.  I just want to know what we’re doing here and how it’s all going to work out.  I walk through the grocery store and see Thanksgiving napkins and turkeys.  In Target all the Christmas decor is emerging and it sounds so lovely to be planning for a big family meal and a pretty mantel and tree.  They are all pinpricks, little relentless jabs that remind how different life is from how we thought it would be, how we long for it to be.  Friends inquire when they can come visit and I look out into the night and see no landmarks, nothing to give perspective on distance and time.  I scan the horizon and all I see is void.

I suppose they name it a “Roadmap,” to make you feel a little better, to inspire some confidence that we all know what we’re doing here.  We have purpose.  We have a plan.  We have a roadmap.  And we do have a plan and I really can’t complain.  It creates some framework, some structure to the days ahead.  It feels like we get to be intentional, well thought out and that gives the impression of control.  And oh how we hope it is not an illusion but actual control, actual power over those wily cells, so resilient and persistent. The Roadmap says that Allistaire will receive 7 days of Decitabine, each for a one-hour infusion.  She will then have four days off, her last days of freedom before being admitted to the hospital on Wednesday, November 19th.  Starting on the 19th, she will receive an infusion of Mitoxantrone, Etoposide and Cytarabine each day for five days.  The next twenty-four days will be a matter of waiting for the chemo to takes its effect, protect against infection, address pain and nutritional needs and provide platelet and red blood transfusions due to her decimated bone marrow.  Once her marrow has sufficiently recovered, thus also giving any remaining cancer cells time to recover, another bone marrow test and PET/CT scan will be done around day 28.

Beyond December 17th, I have really no clue where we’ll be.  If this round of chemo fails, it’s very possible we’ll head to Denver for the DOT1L trial.  If, gloriously, she’s in remission sufficient for transplant, then conditioning (chemo & radiation) for transplant would begin in earnest. In order to have a transplant, however, she needs a matched donor.  In March of 2013 when they searched the world for a donor for her, they only came up with 2-3 possible options, none of which were in the United States.  I just received paperwork from SCCA (Seattle Cancer Care Alliance) about reinstating the donor search for her.  I was blown away when I read that there are 22.5 million people world-wide that are registered donors, and yet – there were less than a handful of options for her last time!  That’s wild!  That tells you how critical it is that more people join the registry because our genetics are so diverse and are becoming more and more so as ethnic groups intermix and have children together.  So we pray again for a donor.

I have to say that I’ve been feeling pretty down about Allistaire’s prospects.  I think if she can get to transplant, then she has a shot, a very narrow, small shot, but a real chance nevertheless.  But I look back to the last time we tried all sorts of chemos to get her in remission and absolutely none worked.  I was encouraged though last Thursday when a mom that I met said that this DMEC round is what put her son into remission for his third transplant.  I met her at a little party I was invited to.  But really, it wasn’t little at all.  There may have been less than 20 people in the room, what we were there to celebrate is phenomenal.  You see, a nine-year old boy, Zach, died last January after complications from his third transplant for AML.  In all the years that Zach fought cancer, his parents, Julie and Jeff, were determined to scour the earth for options to save their boy.  They had the resources to execute a phenomenal search for Zach’s cure.  Their journey led them here to Seattle to Seattle Children’s and Fred Hutchinson Cancer Research Center.  They began to work with Dr. Phil Greenberg at Fred Hutch as he and his lab were advancing the potential to use TCRs (T-Cell Receptors) to destroy cancer cells.  “Data from early phase clinical trials have demonstrated the capacity of high-affinity TCR Tcells to eradicate leukemia in individuals who have relapsed after a hematopoietic stem cell transplant.” (Quoted from the Juno Therapeutics website where Dr. Greenberg is one of the scientific founders).  The death of their son, Zach, has only fueled his parents’ passion to work even harder to bring better options to kids like Allistaire who have very difficult to treat AML.  In the course of the last twelve months, Julie and Jeff have spearheaded fundraising efforts to benefit Dr. Greenberg’s lab that has provided 1.7 million dollars to further his research.

Their efforts and the generosity of so many people combined with the countless years of tireless research by not only Dr. Greenberg and his lab, but many others at Fred Hutch and Seattle Children’s Research, have yet again intersected with our lives.  Apparently Allistaire’s school pictures arrived after we left Bozeman.  I realized yesterday that I never cleaned out her little cubby with her paint shirt, gym shoes and pencil box.  When we drove into a parking garage the other day she yelled out, “B!”  I had no idea what she was talking about until I realized we were on Level B and again the cut twisted in, the combined joy of realizing she was beginning to learn her letters that would eventually enable her to read and the pain of knowing she would never return to preschool.  That experience is forever cut out of her life.  There are countless ways our lives are not what we thought they were going to be or so desperately wanted.  But when I look back to August 2013 and consider where the doctor said we would be, Allistaire in the ground, I am heartily reminded that I have ever so much to be thankful for.  And one of those gifts that extended life has produced is the possibility that Allistaire might be the recipient of these marvelous genetically modified T-cells.  I had the chance to speak at the party for a few minutes and tell Allistaire’s story.  I told the story to the members of Dr. Greenburg’s lab, each amazing scientists in their own right and the majority of whom are women.  There were many red faces with tears.  Allistaire was there to be the tangible reminder of why they work so hard.  We had the chance to talk with Dr. Greenburg briefly.  What an unexpected gift all around.

I look out into the void and strain to see landmarks showing the way ahead.  I just can’t.  I just have to dwell in the present.  That’s not so bad really, I mean it’s contrary to what my nature prefers, but the Lord has given me weapons to aid me in the fight to rest.  Isn’t that ironic, I must actually fight, wrestle to rest.  But that’s what this battle actually is at its core.  So, I eat the manna, God’s provision for me this day.  I rejoice knowing He has gone before me and laid down provision up ahead.  He opens and closes doors to guide me along the path He has chosen for us.  He holds Allistaire in the palm of His hand.  I could really go on and on and on about The Lord’s all sufficient capacity to care for us.  This is what I do when the dark waters rise and threaten – I focus my eyes not on trying to see the way ahead, but rather I fix my eyes on Christ, being reminded that He is THE way.  My friend Betty, showed me this great profound and simple passage in 2 Chronicles 20.  The Israelites are surrounded by invading armies, and they sum up their battle strategy with this as they cry out to God, “We don’t know what to do, but our eyes are on you.”  Perfect.

On a side note, I will be putting out a post in the next couple days on specific ways to help.  For now, I have updated the page, “How to Visit & Send Mail”

The first few pics below document Allistaire’s previous two Hickmans.  The first was at diagnosis in December 2011 when she was 21 months.  This one was removed in May 2012.  She got her second Hickman upon relapse in February 2013 just before she turned 3.  That one was removed in March of 2014 when she turned 4.  And here we are at number 3 with her second relapse in November 2014 at 4 1/2 years old. Unfortunately the surgeon was unable to put it on her right side again, but everything went smoothly on the left.

A few links worth checking out:

Juno Therapeutics 

Zach Attacks Leukemia

Fighting Fire with Fire

Be The Match

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Aug22

Weakness splintered through with joy

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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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Jul22

SMACK DOWN!

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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?!!!

ORDER HERE NOW!!!

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

Jun13

One Year Post-Transplant Long Term Follow Up

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

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

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

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

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

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

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

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

Interpretation

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

Comment

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

Clinical

4 year-old female with history of AML.

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

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

The cytogenetics/FISH report says this:

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

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

The chimerism test showed 100% donor cells!

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

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

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

“It doesn’t get better than this.”

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

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

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

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

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

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

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

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

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

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

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May31

Magical

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We pale Montanans approach the line for the ride, tentative in the foreign heat of Florida in May and unsure what this little blue pass will provide.  The sign says there is a 60 minute wait.  My fingers grope in the zippered pocket of my purse for that thin piece of plastic with the picture of a genie on it.  I hold up the pass before the greeter at the front of the line and ask with stuttered speech, where should we go, what do we do with this pass?  “Oh, right this way, ” he says and before we know it we are ushered into a line that puts us right on the ride within only a few minutes.  To see the now famous princesses of the Disney movie, “Frozen,” Anna and Elsa, the wait was 180 minutes.  Upon presenting the blue pass, the one with the grinning genie, we were led alone to a hallway, crafted in all the impressive skill of Disney to look like a castle, the glory of air conditioning soothing our over-heated skin.  Again the magic worked and within only a handful of minutes, Allistaire and Solveig were twirling in their dresses along with Elsa and Anna, conversing about how they were both sets of sisters with two different hair colors.  The pictures were taken and on we went to the next princess.  It only now occurs to me that the genies grant wishes.

It did not take long for us to get the hang of using the genie pass, but every single time, as I held it up before the greeter, I felt that quavering sense that we were getting something we didn’t deserve.  I felt the looks of scores of people who had been waiting long in the tiring sun, boring into my back.  I could hear their questions in my mind…”Hey wait a second, why do they get to go ahead of everybody else?  Can’t you see how long we’ve been waiting?  Who are you to get in front of all of us?  How do we get that pass?”  A look passed between Sten and I.  No words were necessary to know we were feeling the very same thing.  That’s right, who are we to be so blessed, to be so favored, to receive so much?  I hoped some might catch a glimpse of that little white button pinned to my purse strap, with the blue words, “Make A Wish.”  Perhaps that glossy red scar on her chest or the too short hair might give clue.  Eventually we relaxed more into the role of receivers of grace, of bounty, of undeserved favor and kindness.  With open hands we accepted privilege and gift, all with the striking awareness of the paired contrast of undeserved favor and undeserved sorrow.  For so long we have sat in small rooms waiting, waiting for that next stab of metal into flesh, for test results, for medicine, for blood, for endless conversations with doctors.  For years now our lives have been lived with horrors few see, with sorrow so deep and pervasive, we weep when brushed against.  Rarely has the question been uttered out loud, but it is there never the less.  Why has this happened to us?  Who are we to have our lives so plundered and ravaged?  We have been the ones looking on with envy for the beauty and bounty of a simple life lived without the relentless, snarling teeth of cancer.

In short, we were astounded by the outlandish provision of this epic family vacation.  When we were getting our luggage into the rental car at the airport in Orlando, a woman in the car next to us asked how much we paid for our car seat rental, so aghast was she at the $130 she had just been charged.  I shrugged my shoulders and said I didn’t know, it had simply been given to us.  Handing the cashier at Disney World my Visa card for the ridiculously expensive lunch, though the prices were shocking, I knew they were covered by that check given to us by Make A Wish.   Money for meals everyday and payment for checking our bags on the airline were provided.  On Friday when we at last allowed the girls to go into one of the innumerable Disney gift shops to select a shirt and a toy, I knew that too had already been covered.

Have you ever been to Disney Land or Disney World?  One of my favorite things is that everywhere you look, the details have been attended to with exceptional care and thought.  There is beauty and magic at every turn.  Nothing is ordinary.  Everything is over the top and splendid.  So it was with our Make A Wish trip.  Every last detail had been attended to and not just with some base provision but with over the top care and abundance.  At Give Kids The World Village, where we stayed for the week, there was a carousel you could ride on any time of day along with ice cream in unlimited quantities from 7am to 9:30pm.  There was a train, put-put golf, horse rides, visits by Mickey Mouse and Mary Poppins and pizza delivery to our “villa.”  An amazing pool with a gradual slope inward, allowed even those wheelchair bound to enter the pool in specially designed plastic wheelchairs.  Every morning a gift appeared in our villa for the girls and Allistaire has a golden star that was placed on the high ceiling of the turret of the star tower by the star fairy.  One hundred and seventy thousand times a star has been placed on the ceiling of the Castle of Wishes, each with the name of a child who has stayed at Give Kids The World.  Every detail was considered and planned for with giddy abundance.  For this magical week, we simply received and received, hands and hearts full to overflowing.

Despite the exhaustion of long days walking and late nights, finally getting to bed most nights not long before midnight, the girls sprung out of bed, spazzing out with joy and delight.  Left up to her, Allistaire would have worn her blue peacock-butterfly-fairy dress every day.  The generous folks at Rocky Mountain Toy Company in Bozeman donated these matching dresses to the girls as part of a fund-raising endeavor for Make A Wish by Main Street Fitness also in Bozeman, and just downstairs from Sten’s office.  The girls received many a compliment with their matching flashes of blue jewel and toothy smiles.  Turns out both the girls also received the very important genetics from Sten and I that relishes roller coasters.  Though Allistaire was too short for some of the more spectacular rides Solveig begged to go on repeatedly like Space Mountain, Rickshaw Rapids and Harry Potter, she never the less became a connoisseur of Thunder Mountain Railroad and Splash Mountain.  I could go on and on about the delights of our trip but suffice it to say it was amazing.  Sten and I most relished being together as a family and seeing the girls so giddy together.

Our other joy was a four-day lay-over through Atlanta to see our Georgia side of the family and most especially my 90 year-old Poppa who we had planned to see last year over Memorial Day Weekend.  As with so many things, those plans didn’t work out a year ago.  And yet, here we were a year later sitting out in the grass in a circle of chairs under the shade of a massive pecan tree.  Both my parents are from Georgia, my mom from Atlanta and my dad from La Grange.  Even though I have had far too few opportunities in my life as a dweller of the West Coast to spend time in Georgia, its pale asphalt roads, rolling hills of green and trees, liquid pink sunsets and thunderstorms are dear to me.  This was my first visit back since my grandmother,  who I cherished, died 6 years ago.  As I walked out the door, I knew it could be the last time I see my Poppa alive.  Sometimes this stretch of life, with all its gorgeous riches punctuated by pain and sorrow is just too much for me.  Sometimes I fear if I started crying I would never stop, so beautiful are its gifts and so painful its losses.  Jerry Sittser, in his excellent book, A Grace Disguised, talks of how sorrow expands the soul enabling it to experience more intensely and expansively the joys and woes of this life.

The week at Disney World, Universal Studios and Sea World was a whirlwind and Allistaire did great with her energy level and appetite. With the restart of steroids we expected more of the ravenous appetite we saw when she first went on steroids last July, but thus far I can’t say I really see a big difference potentially because of a smaller dose. I have actually wondered if they even prepared the liquid solution of steroids right given her non-impressive appetite, no seeming weight gain, chubby face or mood swings. Her CT next week will tell how effective the steroids have been against this strange Cryptogenic Organizing Pneumonia in her lungs. Our first full day in Georgia brought one time of throwing up and diarrhea that quickly turned into impressive quantities of near pure fluid. Early Tuesday morning, the day before we were to fly home, I had the frightening thought that rather than being a simple virus that needed to just work through her system, this could be C-Diff given how similar it was to when she had C-Diff in February. With the amazing help of my Aunt Kelli who is a nurse, by 9:20 that morning we were seeing a local pediatrician who, in conjunction with the on-call HemOnc Fellow at Seattle Children’s, assessed her for dehydration, ordered stool samples and wrote a prescription for Flagyl to use in case she turned out positive for C-Diff. My concern was that if she continued at the rate of diarrhea she had been going, she could get dehydrated fast and we would be on a plane for much of the next day. We need her kidneys in good shape!  And C-Diff cannot be stopped without medication. It all turned out fine – all test results were negative and I am happy to report that yesterday’s stool was normal. I know you wanted to know that.

We arrived home Wednesday afternoon to a resplendent, green Montana fairytale land. Snow on mountains set against blue skies, green fields, trees finally leafed out, and wild flowers bursting everywhere. I went to sleep and woke up to a multitude of birds in song. I found myself smiling irresistibly at the sound of crickets and delighted at the sensation of cold feet on the kitchen floor, no longer donning Smart Wool socks and slippers. The green of the meadow in front of our house seemed almost outlandish, cloaked in a spray of yellow dandy lions. Calm and joyous peace spread silent and slow to the outer reaches of my extremities. Awww. I have not seen Montana green in two years. No matter how lovely Washington is this time of year, it is no longer my home. No, now I abide here and I have longed with insatiable desire to soak in the invigoration of this green.

It’s taunting really. Like, really, really taunting. Upon arriving home, I have had three days to unpack and repack for Seattle.  On Sunday, June 1st, Allistaire and I will again drive the 700 miles west to Seattle.  Once again I am told there is no room for us at Ron Don and I am left with yet another unknown.  On Monday Allistaire will start her day with Registration as an SCCA patient at 9:15 followed by a blood draw, an evaluation appointment with Joan Suver, our primary and amazing nurse with the Pediatric Continuing Care team, and a meeting with the nutritionist before we head over to Seattle Children’s for a Physical Therapy appointment and to round it all off, a CT at 4:15 to determine the progress in treating Allistaire’s lung condition.  Tuesday morning, June 3rd at 9:30am, Allistaire will have her 16th bone marrow aspirate.  Wednesday she will have an echocardiogram and then an appointment with our fantastic cardiologist, Dr. Sabrina Law.  That afternoon she will have a dental appointment and an ophthalmology appointment.  Thursday afternoon at 1:30 we are scheduled to meet with Dr. Carpenter to go over all test results and meet with the pharmacist, though I am quite determined and hopeful to get bone marrow results by Wednesday evening.

All of these appointments comprise the one-year post transplant LFTU (Long Term Follow Up) with the point of assessing the state of her leukemia, GVHD and the health of her organs.  Thankfully, her CT on May 5th did not show any evidence of disease outside of her marrow so this week’s CT will not involve oral or IV contrast and will be focused on looking at her lungs.  I am thankful this is one aspect her health that is already known.  Additionally, while a specialist will assess her heart, eyes, teeth/mouth and physical movement, there has been no evidence of GVHD in these locations based on the evaluation by Joan and Dr. Carpenter when we were in Seattle three weeks ago.  The big questions are how her lungs are doing and whether or not there is disease in her bone marrow. Of course the situation in her lungs is serious and must be addressed, but obviously it is that bone marrow test that has me shaking.  Allistaire has not had a bone marrow test since late January and since she has finished chemotherapy.

As has been the case so very many times, I don’t know how to pack.  I don’t know if I’m coming home next week.  I don’t know if this is the last Saturday afternoon at home in a long, long time.  With cancer, every step forward into more treatment, is a step into darker and deeper waters.  In the same moment that I am relishing the beauty of Allistaire’s gorgeous blue eyes and sweet, sweet little voice, I am scanning her cheeks for hints of pink.  Though I long for a higher hematocrit from her last blood test nearly three weeks ago, I resist the urge to pull down her lower eyelid to look for anemia.  Well, okay, I gave in once and told myself to knock it off.  When she walks around the house, doggy clutched up tight to cuddle as she sucks her thumb, and complains, yet again of being tired, I find myself raging at her.  I DON”T want to hear that you’re tired!  Fatigue is that canary in the mine, the harbinger of doom.  Go find something to do I yell.  She sulks off and I continue the yelling and feel explosive emotion swelling my cells, causing my muscles to flex and yearn for bursting as I scream at God, raging and pleading for a normal life.  Just a normal life God!  That’s all I’m asking for!  Dandy lions and crickets and grocery shopping for dinner and a picnic are enough for me.  And I yearn for that stately noble peace that allows me to walk back into war with courage and determination.  Instead I whine that I really just want to see the hay cut and to sit around a camp fire.

I just want a normal life Lord.  Because the truth is I’m looking here, at this plane of existence, at this slice of reality.  It still takes tremendous effort, exertion for me to Lift My Eyes, to look up, to look out, to consider lives beyond my own.  I have walked up that mountain with trudging steps, so many times, having been asked again to trust the Lord with the life of my child, to be willing to submit to even her death.  Dare I claim to walk alongside Abraham?  Abraham could have turned away in action from what God called him to and for me there is no action possible that can thwart or determine the outcome of this bone marrow test.  Though powerless I may be, my heart is a raging sea that seeks to yield to the voice of the Lord, telling it to be calm.  Dare I claim further, to sit with Christ in that garden?  Technically it is not my flesh that is in danger of being ravaged, but it is, it is.  In Allistaire’s childish innocence, her life may be taken and she would not even know what has been lost.  When I told her that if they found cancer in her bones, she might have to get tubies again and be back in the hospital, her little brow furrowed and then calmed as she exclaimed, “But I could bring my guys, right?”  Yes, yes, of course Doggie and Piggy can come with you,” I replied.  With this she seemed satisfied.  My own heart would be utterly torn, not with neatness of sharp knife but with the ragged brutality of predatory teeth.

Let it pass from me Father.  Take this burden away from me, I plead and ask over and over.  I am so very tired.  And perhaps it will, perhaps it will.  We have had a year we never imagined would really be.  Allistaire’s life has been sustained by more than double.  Countless times mercy has been granted.  But the past is no guarantee of future circumstances.  The only promise is that He will remain faithful to hold me, come what may, and in this way the past lays foundation for future days.  So I call out again and again asking for Him to be present, to hold me up, to show me His face.  I listen with ear tilted back to those promises and exhortations echoed off the dark evergreens – be expectant – look for the abundance I will bring.  My flesh twists and my fist clenches, but I want abundance for me, now.  And I look over at Christ beside me in the garden and I see His weeping, the torrent of tears and hear His voice speak, “Your will be done Father.”  Why?  Why submit?  Why yield?  “For the joy set before Him, Christ endured the cross.”  I can think of no words that more clearly articulate God’s answer for why He allows suffering and calls me to seek His face in the midst of it.

Yesterday I took the girls to the Dinosaur Park, their favorite.  I determined to just sit in the sun on the bench.  I had just finished reading a little story on Facebook about a brave little soul who willingly endured suffering for the love that would unfold as a result.  Marleigh’s mom, Becca, posted at link to it, she whose little beloved passed from this life 5 months ago from AML.  I was trying to hold back the tears when I looked up and saw my friend Kelly from BSF.  Kelly was God’s grace manifest in the flesh to me that day.  Through her tender words, I was reminded that there is already a bounty of life of which  I can only catch fleeting glimpses.  My Father, through His indwelling Spirit in Kelly’s life, helped strengthen my neck to lift my eyes.  God is at work.  It is simultaneously ordinary and mysterious.  All too easy, I look only at my own life and demand what I feel is my right, forgetting that Christ willingly laid down His own life that life might spring up in all who look to Him.  Life Eternal.  Live Abundant.  Is that not more glorious than the wee life I seek to clutch greedily to with my little finite fist?  God only asks that I love Him and love others.  Isn’t that ultimately what this is about?  Through this fire, I have indeed seen His face more clearly and heard His voice which has in turn fueled greater swelling love for Him.  And what if this blood spilled, these tears intermixed, are fodder and seed for life and love in other’s lives?  Is that not what it is to love in this broken world?  To lay down your life for the life of another is love.  Can God so transform my heart into the likeness of His Son’s that I more and more willingly yield to a life broken and spilled out for the blessing of others?  For the joy set before me – this is why I look up.

As I wrap up this post and at last go home to pack for the journey that resumes tomorrow, my ocean of angst is a bit more calm.  My heart is little lighter.  The creases in my face more relaxed.  Here we go.  Out again into that vast darkness where anything is possible.  I cling to His promise to me, that even there, even in the blackest of dark, He will be found by me.  He will give me ears to hear His voice.  And I believe, miraculously, even there, with quavering, unlovely voice, I will sing praises to His name.  He has been good to me.

This is the verse Kelly later texted me:

Psalm 27:13  “I would have lost heart, unless I had believed that I would see the goodness of The Lord in the land of the living.”

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