One week ago, I was putting Solveig Kailen, my sweet little love, to sleep – for the last time, in a long time.  I lay in the dark next to her, telling her I loved her and wishing I’d had more time to be a good mom to her, wishing for more time to listen to her read and watch her expressions as she enthusiastically describes the events of the day.  I lay there wondering if the sound of two sweet sisters, giggling and running would bless our house again.  The thought of her alone, without her sister, is one of the heaviest weights on my heart.

This afternoon, I lay beside Allistaire in her big girl bed in the hospital room.  I lay in the partial light; the sound of voices and machines outside the window facing the hallway.  The cardboard birds hung still from the ceiling.  The bright fish swim suspended in the blue stream on the wall behind the bed.  How many days and how many nights have I dwelt in this room?  Seventy-five days and seventy-five nights?  Allistaire lived in this room for three out of her four rounds of chemo.  I knew exactly how to arrange her clothes in the drawers and what switches turned on what lights.  I know most of the nurses.  I know how to navigate this world.  It is all so surreal, so familiar, so known.  Internal conflict shifts and moves and shoves.  My impulse is to push back and resist this familiarity.  To give into it, to be lulled into its rhythms, somehow feels like acceptance, feels like approval, feels like betrayal.  Part of me rages that I know the things I know, that I am without shock, that I can so easily and simply slip back into this world.  Part of me doesn’t stop thanking God for all the faces that have expressed sorrow for our reason for being back, and joy for my girl.  Part of me knows embrace and kindness from mouths that can say, “she’s gotten so big, listen to her talk.”  It hurts and soothes simultaneously to be surrounded by people who love your child because they know your child because they have spent countless hours caring for them.

For the last three days Sten has stayed with Allistaire in the hospital while I have been hurriedly trying to set up our world here.  Two trips to Target have enabled me to get situated in my new room at the Ronald McDonald House – a name I hate and hence forth will always refer to as, “The Ron Don,” as everyone here calls it.  There is a bit of food in the mini-fridge and in the little locked cabinet, sheets on the bed and clothes unpacked.  I purchased glass containers for Allistaire’s hospital room in which to heat up food and oatmeal and dish soap and extension cords – all the little things that make life lived in a hospital function a bit better.  I talked with the folks from “Side-by-Side,” a volunteer ministry of University Presbyterian Church, to get Allistaire a great volunteer who can be consistently paired with her.  I’ve talked with the social worker and the child-life specialist and the transition nurse about what home-care services we want to use this time around.  I called up Carrie, our financial counselor to figure out how all this luxury will be paid for.  I thank the Lord for all who have given to this amazing institution that is directly making it possible for Allistaire to recieve the care she will have.  We qualify for the hospital’s compensated care program which from our side acts like a secondary insurance.  The hospital is able to write-off whatever the difference is between what the insurance pays and what the actual bill is.  What an inconceivable burden, and impossible burden this would be if there was no such program made possible by incredible generosity.

In addition to all these logistical issues, Allistaire has had test after test to get base-line data prior to beginning her treatment.  Yesterday we received the results of her bone marrow biopsy and lumbar puncture.  She has 1.1% leukemic blasts in her marrow as compared to 21% at diagnosis last time.  I wanted to take comfort in this wee little number, but Dr. Pollard says that the percentage at this point is not  very significant, rather, it is most important how well the cancer cells respond to chemo.  The one good thing about this low number, however, is that her “tumor load,” is not very high which means that when the chemo takes effect the, “tumor lysis,” which is essentially the cancer cells spewing their nasty guts into Allistaire’s blood stream, is not likely to be very great.  Tumor lysis itself, if in too large an amount or not planned for with massive fluid intake, can cause severe organ damage and even death.  Also, while her blood counts have begun to drop, her ANC is still in the normal range so far which means she has protection against infection until the chemo hits and makes all of her counts drop drastically.  Today her hematocrit was 32.3, platelets 191, white blood cells 4 and her ANC 1420.  We can also rejoice that there is no cancer in her spinal fluid and her cancer cells did not mutate into FLT3 which can happen on rare occasions.  Some of you may remember that FLT3 is an awful mutation that makes the cancer cells divide at staggering speed.  There are still a few more cytogenetic tests that will take another week to come back, but so far it seems no mutations have occurred that worsen her prognosis further.  Unlike before, however, it is clear from Allistaire’s CT scan that she has lymphadenopathy which is just swollen lymph nodes but the cause of this is that the leukemia cells are in her lymphatic system and is evidence that her body is trying to fight it off.  The CT scan also shows a sort of spreading around the area of Allistaire’s biopsy on her back.  Dr. Pollard says that this could be infection, though it does not look like it to her, or it could be that the tissue is agitated and attempting to heal from where the biopsy was done, or it could be her leukemia cells spreading out into the skin.  Initially, hearing affirmation of the cancer being in other parts of Allistaire’s body is frightening, but Dr. Pollard emphasized that usually leukemia in these locations responds really well to chemo.  Once she has completed this round of chemo and her blood counts begin to sufficiently recover, she will have another bone marrow test, lumbar puncture and possibly biopsies of her back and lymph nodes to see if the cancer cells are dead there.  All of these tests together will tell us if Allistaire is in remission and ready to go to transplant.

Tonight Allistaire began her treatment for cancer, again.  It has begun with a shot and tomorrow will start the chemo.  I hope to give more details about her actual treatment in the next few days.  Her little body is wounded and so scarred.  Her back is still scabby red and healing from her biopsy.  There are two puncture wounds above her hips from the bone marrow biopsy and lumbar puncture.  There is a tiny cut into her neck where they insert one end of her Hickman Catheter to connect it to her artery and another larger hole in her chest where the lines, or “tubies,” as we call them, hang down.  There are two old scars from her first Hickman.  Do you think all this has gotten her down?  No way!  That sister is a wild cat.  She is sassy and sometimes down right rude but full of vigor and gusto.  She rides and rides the bikes and sweats like crazy under her helmet.  She goes down to Piper’s room and stands in the doorway to ask if Piper wants to ride bikes with her.  She tells the nurses she wants crackers and juice.  As before, she loves to help clean her tubies with the alcohol wipes.  It seems that even for her, this is familiar, this is known.

Here are two pictures of Allistaire on the bikes – one from the first time and the other from yesterday:

Wow you guys, I have been completely inundated with so many of you wanting to know how you can be tested to see if you are a match for Allistaire.  Thank you for your beautiful desire to help!

The place to go to get all of your questions answered is:  www.marrow.org

However, I am going to attempt to answer a few of the major questions here:

• The only way for you to be tested specifically for Allistaire is to have the HLA (human leukocyte antigen) done on your own with your own health care provider, at your own expense and then have those test results sent to Dr. Jessica Pollard at Seattle Children’s Hospital.  You are not able to be tested on behalf of a specific person through the bone marrow registry, as it is a means for you to be matched with anyone who might be in need of a donor.
• As I understand it, because neither Sten or I, nor Solveig are a match, closer family members are as unlikely to be a match for Allistaire as someone off the street (of course this is a generalization, but tends to be the case)
• Ideally, we want the bone marrow of someone between the ages of 18 – 44 years old.  Not that we don’t appreciate all the love and willingness from the over 44-year-old set, but apparently, this age range is the doctor’s ideal populace because of the health of their bone marrow and of course we want the very best for Allistaire
• Getting tested is super easy – simply go to http://www.marrow.org and click on “Join the Registry Online.”  You will be directed through a number of questions in order to initially sort out those who cannot donate.  I myself am unable to do so because of an auto-immune disorder I’ve had in the past.  If you are a viable candidate to donate, you will be sent a little kit in the mail to swab your cheek to begin the tissue typing process.
• If you are serious about joining the registry, please know that the speed with which you take every step and respond to all requests by the registry is literally helping a real person.  There really is someone in a hospital bed, with cancer gnawing at their flesh, waiting for your cells to rescue them.  If they call you, call right back.  If you have to go get a blood test done, do it that very day if you can.  Yes, inconvenience your life – because you have these choices and you may be able to help someone who is out of choices.
• While I cannot tell you how much love I feel from you all who have said you can get tested, please, please, do this regardless of whether or not it will help Allistaire herself.  When this reality first hits you it is easy to say, “Why me?  Why my child?”  It did not take long at all for me to see the other side of that.  The truth is, Allistaire is no more wondrous and cherished and valuable than any other child.  Yes, we know her.  We know her blue eyes that smile and her pudgy dimple in her right cheek and her silly dance moves.  But, I don’t have any more right to have a living child than any other mother or father.  Register regardless.  And again, if you’re not white – yeah!  All the better!  You clearly won’t be a match for Allistaire but your cells are oh so desperately needed!
• Will it hurt you wonder?  Yeah – a little, and I’m not exaggerating.  You’re thinking, oh gosh, gigantic needle stabbing my bones, I couldn’t do that.  Yes you can.  You’re a big kid now.  Listen, Allistaire had a gigantic needle put in her back 8 times on Friday.  She left with a band-aid and has had not one dose of pain meds and has literally been jumping around on her hands and knees, jumping off stairs, running everywhere, spinning, spinning.
• So, take all that enthusiasm and desire to help and follow through.  Go online, register, do your little cheek swab thingy when it comes in the mail and then be ready to act with speed should the call ever come.

And just a little clarification for what Allistaire herself needs.  She needs a donor ready to go by the end of this first round of chemo because we are so hoping and praying that she will indeed be in remission by then.  I am realizing that saying, “round of chemo,” has been a bit confusing.  This “round of chemo,” involves 7 days of shots and 5 days of chemo itself but the actual “round of chemo” is 28-35 days long because it includes the full time for the chemo to wipe out her blood counts and then for them to rise again.  In this world, the ANC or Absolute Neutrophil Count (one of the specific types of white blood cells), is the key number we watch.  On Friday, Allistaire’s ANC was about 1400.  About 7-10 days after chemo it should drop to zero and then it stays there – how long totally varies.  Allistaire’s very first round of chemo ever in December 2011, her ANC stayed at zero for 18 days, which is a very long time.  It could end up at zero for only a few days.  Regardless, the “round of chemo,” is not considered complete until her ANC again rises to 200.  This is the golden number that allows you to leave the double doors of the Unit.  This is when you know it is time for another bone marrow biopsy and aspirate to determine if she is in remission.  This is why I say we need new donor cells in about 5 weeks.

It’s confirmed.  The pathologist here at Seattle Children’s reviewed the slides and tissues samples from the biopsy of Allistaire’s lump that we transported ourselves from Bozeman.  They call it a Leukemic Infiltrate and what it basically is, is bone marrow stem cells in the skin of Allistaire’s back – not really the place that bone marrow cells are supposed to be.  “Relapse,” such an ugly word.  “Refractory disease,” is another term.  Whatever you want to call it, it is an utter sinking of the heart.  It is grieving for a thousand things – for beautiful hair that is finally long enough for Allistaire to unconsciously twist around her fingers, for ovaries that will never be the bearers of new life, for the scars upon scars on our beloved’s flesh, for a heart and kidneys and lungs and liver potentially damaged by poison, for a brain that is simply bursting forth with growth and development which will be attacked by the same chemo meant to kill the fast-growing cells that threaten to extinguish her life, for no hope of preschool or swim lessons or camping this year, for a distance of 700 miles between two giggling sisters and husband and wife…

There is grieving and sorrow and loss and ache and pain that no words can pin down.  But…that is not all that there is.  As I walked down the path to our hotel room this evening, it was truly evening – a Washington evening, in the spring.  For it is spring here – crocuses are out and little green buds on the trees and birds – oh birds singing their sweet evening songs and light that your very flesh detects as new and fresh.  I spoke with a friend this morning and she, in her very encouraging way, reminded me of something.  She spoke to me of how Solveig and Allistaire would be different people as a result of all this.  As she spoke, her words raised images in my mind of two beautiful, strong, deeply compassionate, amazing women.  It is hard not to only see the potential negative effects of separation and necessary focus on one sibling over the other.  I wonder how I will be able to discipline and teach Allistaire when I must sort through bad attitudes and physical pain and effects of steroids and other drugs.  It is hard not to only see loss and brokenness and threat of death.  But I recall in vivid detail a Sunday morning in December 2011.  It was the first morning of waking up in our house without Allistaire there.  The green light of her baby monitor glowed in the night but she was gone – locked away in the hospital, and who knew, I did not know if she would ever return.  But that morning, the Lord God lifted my eyes and He spoke so clearly to me.  “Be expectant,” He told me.  “Do not fix your eyes behind you on all that you fear is lost, but look up, look out, be on the alert.  I AM at work.  I AM on the move.  I will accomplish my glorious, beautiful will that you cannot even being to conceive of.”  From that day, the living God of the Universe, so clearly spoke to me and told me – this is not an alternate path.  This is not a mistake.  You are not on a detour from the good life you should have.  This, this path, this life IS the life, the path that I have for you.  God wastes no pain.  Whatever the costs of these days, will be far exceeded by the glory and beauty and wonder of what God is at work creating – this creator God who never ceases to bring life out of death, good and of evil and light out of darkness.

So I am on the look out – eyes roaming and heart seeking to behold what God is up to.  At the same time I must crouch low and be on the alert for all that seeks to devour my beloved.  God has given me too, this role to advocate for the life of my child, to know her utterly and speak on her behalf.  This has always been my responsiblity as her mother, but in these days there is much more on my plate.  I must have ears to hear what is being said, to know what questions to ask of the doctors and nurses, to be attentive to Allistaire, to scan her flesh for signs of anything awry and watch her demeanor for indications of issues that her words will never tell me.  I am the one that must sign the consent forms to stick needles in her back, to take flesh from her, to allow experimental drugs to drip into her veins, to help nurses wrestle her when she defies getting her blood pressure taken, I am the one to walk the halls with her – IV pole in tow and to make sure she doesn’t rip out her lines in her zeal to ride the little bikes on the Unit.

So here’s the plan in brief – I’ll get to the details on another day.  Basically the plan is this: get the sister into remission, napalm her own bone marrow and then give her someone else’s that will set up shop in her body and have just the right balance of attacking any remaining cancer cells but not fighting her own flesh too much.  Okay, so maybe just a wee bit more detail.  Dr. Pollard has recommended a particular chemo regiment that they have had good results with for kids who have relapsed with AML.  We will also be enrolling her in a clinical study that will help her body recover her blood counts faster and thus help give her better protection against infection from evil doing bacteria and viruses.  So the goal is to get her into remission with this one 5-day round of chemo.  Like before, she will have to remain in the hospital while her blood counts drop and then rise again.  They will then do another bone marrow test sometime after her ANC (Absolute Neutrophil Count) gets to 200.  This typically ends up being between day 28 through day 35 (day one being the first day 0f chemo).  In order to be considered in remission, Allistaire will need to have a cancer cell level of less than .1%.  Back in the day, remission was considered 5% cancer cells or less and now, with the amazing aid of Flow Cytometry, the level has gotten down to .1%.  Leukemic cancer cells are bone marrow stem cells that never become healthy, functioning blood cells but begin replicating at greater frequency and will have proteins on their surface that also can create all sorts of yucky junk – in Allistaire’s case, her cancer cells created fibrosis which looks like a dark web-like structure in her marrow.  If this is all new to you, consider checking out the, “Getting acquainted with AML” post that you can click on, on the upper left box of the page.  Also, I think there are some details I have forgotten myself and need clarification on, so don’t be surprised to find changes to this post once I talk to Dr. Pollard again.

So, assuming Allistaire can get into remission with just one round of chemo, we still have an enormous hurdle – finding a bone marrow donor who can be ready to donate in time for Allistaire to begin the transplant process after this one round.  When we first began this process, the doctors said to us, “Oh, she’s white on white, we shouldn’t have any problem finding a donor for her.”  I assume this to mean, that because her ethnicity is so utterly northern european and Scandinavian, there is an ample donor pool available to her.  In contrast, those whose ethnicity is from a part of the world with fewer donors, will have potentially fewer match options.  What this should tell you is, hey, if you’re not white, you have an extra responsibility and opportunity to sign up to be a bone marrow donor, to be a match for people like Allistaire’s little friend, Jenna, who is from Guatemala and had a transplant last spring, or the little girl in the room just down the hall from us who was Indian and needed a transplant because of an auto-immune disease.  More about bone marrow donation in another post sometime very soon.  The point is, please pray that God would provide a perfect matched donor in time for her to begin the transplant process right after the end of her first round of chemo.  If a donor is not yet ready, Allistaire would be forced to go through another round of chemo, even if she is already in remission.  This would simply mean more damage to her organs and more time to be open and vulnerable to infection.  Fortunately, Allistaire has already had the HLA blood typing required to determine everything we need to know about her to matched with someone else’s stem cells.  All four of us in our family were tested the first time around and neither Sten or I, nor Solveig were matches.  Time is of essence.  Dr. Pollard called Fred Hutchinson to alert them of our need for a donor even before we met with her.  They told her it would be extremely tight, and maybe impossible, to make it happen in the time frame she is hoping for.  My estimate is that we have 5-6 weeks before Allistaire could potentially and optimally being ready to move forward with a transplant.  I personally have already been contacted by SCCA (Seattle Cancer Care Alliance) and given the names and contact info of our Search Coordinator.  It is game on and we are scoping the world, literally, for a match for our sweet little love.

So far I’ve really only relayed to you what one, one-hour meeting with Dr. Pollard entailed, and that even leaving out tremendous detail.  The rest of Friday included lab draws at 10 am in which Allistaire of course fought getting her blood drawn.  Then she fought having an EKG and fought having an echocardiogram.  She then intensely fought being weighed by throwing a complete fit on the scale and absolutely refusing to put her feet flat on the ground to have her height measured.  She screamed like a mad woman while getting her blood pressure taken which yielded a most inaccurate reading.  She refused to let Dr. Pollard look at her back where the biopsy was taken or feel her stomach to see if her spleen and/or liver were enlarged.  Dr. Pollard had to go in while Allistaire was under anesthesia for her bone marrow biopsy to complete her exam.  Allistaire fought and cried and screamed when the put the mask up to her face to put her out before inserting the IV for her procedure.  Once Allistaire is inpatient, she will have vitals done at least every four hours.  There are countless occasions where she will have to do what she doesn’t want to do and what likely scares her.  I pray that she will quickly grow accustomed to the routine and that she can direct that angst and fight against that which is harming her and not those who are trying to care for her.

Karen, the nurse practitioner, who did the bone marrow biopsy, said that she removed from Allistaire, more sample than any other child in a year.  A 2-inch cylinder of bone the diameter of pencil lead was removed for the biopsy.  Then, the bone marrow aspirate removed 14 ml of fluid and spicules from Allistaire’s bone marrow.  The aspirate will be sent to several different places for a wide number of tests to be done including flow cytometry, morphology, multiple cytogenetic tests and to the folks conducting the clinical trials in which she is enrolled.  In the past, it was very difficult to get good samples from Allistaire’s bone marrow due to the fibrosis created by the cancer cells.  While the nurse practitioner could detect fibrosis by the feel of things, she felt confident she was able to get good samples.  If this is the case, Allistaire will not have to be subjected to this pain again for at least four weeks.  Even so the gigantic needle went into her back seven separate times and an eighth time into her spinal column in order to determine if the cancer is in her spinal fluid.

Because Allistaire’s blood counts were still actually pretty decent (hematocrit 37.5, Platelets 244 and ANC of about 1400), we were able to wait until this Monday to have her admitted.  At 8:30am on Monday, she will go into surgery to have her double-lumen Hickman catheter put back into her chest.  The Hickman catheter is placed into a main artery so that when chemo is put into her line, it is quickly dispersed through her body.  The other line is used for daily blood draws to determine her CBC (complete blood count).  Monday afternoon she will be officially admitted to the SCCA Unit.  The SCCA or Seattle Cancer Care Alliance is a collaboration between Seattle Children’s Hospital, The University of Washington and Fred Hutchinson Cancer Research.  We are privileged to receive care in such an incredible place.  Never-the-less, it is a small space with a pair of double-doors beyond which Allistaire will not be able to leave for at least a month.  She will be confined to this unit on the hospital in order to best protect her from illness.  That afternoon, the researchers in charge of the clinical study we are likely to enroll Allistaire in, will meet with us to discuss the risks and benefits.  She will also need to be sedated for a cat scan to determine if there is solid cancer anywhere else in her body.  She will be sedated separately for an MRI of her back so that we can have a base line for where the cancer has been in her skin.  Lastly, she will be sedated for yet another lumbar puncture in order to insert chemo directly into her spinal column regardless if they detect cancer there or not – they do this as a precaution.  We are looking at beginning chemo on Tuesday or Wednesday.

Wow, I’m tired just from writing this all down.  There is a lot to take in all at once but I have to tell you, that I am thankful to have a much better idea of what is happening than the first time when just the sight of a bald head and an IV pole with pumps terrified me.  It is strange how ordinary so much of this feels to me.  It is an odd comfort.  And yet, this very process of familiarity has also provided awareness of what is coming, both the expected and the possible – both scary, both hard to know is about to happen to your little girl.

Sten and I have been given 48 hours of “normal” life with Allistaire before she will be admitted.  It is hard on both of us, but particularly Sten who will have to fly home in several days.  For Sten, his heart is heavy knowing that these could literally be the last days he may ever spend with Allistaire doing normal things outside of a hospital.  Yes, we feel melodramatic thinking and articulating such thoughts, but you know what, that’s how I felt thinking about last weekend possibly being my last weekend at home in many, many months, and it has come to pass.  This is the world we live in.  This is the world where a healthy 14-year-old boy named Alistair from Canada can be diagnosed with Acute Lymphoid Leukemia, do great with his chemo and in less than three weeks in the hospital, die of a flesh-eating disease after several radical surgeries trying to stop it.  We have absolutely no clue what our immune systems are doing for us all the time.  We have no idea how vulnerable we are when we are defenseless.  Allistaire could die of a diaper rash, and that is not a joke.  She may simply fly through everything with impressive ease as she did last time – that is what we hope for, but we cannot disregard the might of the enemy inside Allistaire.

As for me, I will not try to minimize these harsh realities, but I choose to hold them alongside the God who created stem cells and bacteria and DNA and all the complexities we come to know as we travel this road.  I have to tell you, I get wild with joy as Dr. Pollard tells me about stem cells and I have learned about flow cytometry and I read about how “The underlying molecular basis responsible for the migration of leukemic cells to the skin is not defined. Homing to specific tissues is controlled by the combined expression of different chemokine receptors and specific adhesion molecule receptors. For example, homing to the skin of memory T cells is regulated by coexpression of cuta- neous lymphocyte antigen (CLA) with specific chemokine receptors.70 CLA on the T cells interacts with E-selectin on the dermal postcapillary venules and initiates rolling and teth- ering of T cells on the endothelial cells. Chemokine binding to T-cell receptors activates lymphocyte function–associated antigen-1 (LFA-1), which will then interact with the intercel- lular adhesion molecule (ICAM)-1 on endothelial cells. The interaction with integrins and endothelial-bound chemokines could then lead to the arrest of the T cells and transmigration into the dermis. One study showed that most CLA-express- ing T cells are CC chemokine receptor 4 (CCR4)+.71 The CCR4 ligand TARC (thymus and activation regulated chemokine, or CCL17) is capable of inducing integrin- dependent adhesion of CLA+ T cells to ICAM-1 in vitro.72 Therefore, homing of T cells into skin is thought to be medi- ated via the sequential interactions of CLA with E-selectin, CCR4 with TARC/CCL17, and LFA-1 with ICAM-1.7.”

Did you catch the last part?  Neither did I!  It’s craziness – it’s amazing – it’s wild how it all works together.  And part of me literally quakes with fear when I realize the insane complexity of what we’re up against.  Then I remember, oh yeah, that’s right, my God made all that.  He not only understands it, He is in control of it.  I mean, He’s the one that literally holds electrons spinning around the nucleus of an atom together.  I know God can heal Allistaire.  It is not hard for Him.  I am asking relentlessly that He would but even more so, I am asking that His good and perfect Will, will be done and that He would be shown magnificent and radiant and mind-blowingly beautiful through all of this.

Yesterday around 3:30pm I listened to a message from Dr. Gardner from Seattle Children’s Hospital.  She wanted me to call her back.  And I knew.  I knew that what seemed impossible, had suddenly burst into our reality.  The biopsy results were, “consistent with leukemic infiltrate.”  Dr. Gardner asked if we could be in Seattle Friday, knowing that Thursday was unrealistic.  So, game on.  Make the phone calls.  Start packing.  By midnight so many tears had been shed, my face looked like I had been beaten up.  Six restless hours of sleep and it was time to finish wrapping things up and get on the road.

Sten, Allistaire and I are in a hotel near the hospital.  Tomorrow at 10am Allistaire has her labs to get her current CBC (Complete Blood Count).  Then it’s off to get an EKG and an Echocardiogram.  At noon we meet with Dr. Jessica Pollard, her primary doctor here and AML guru.  At 1:30pm Allistaire will be put under, have a bone marrow biopsy and aspirate to determine if the cancer is in her marrow.  At the same time they will do an LP (lumbar puncture) which will tell us if the cancer is in her spinal fluid.  I’m guessing she’ll have a cat scan as well sometime soon.  All of these tests will help give us a clearer picture of the extent of the cancer in her body.  The EKG and Echocardiogram will give us base lines for her heart.  At this point we are tentatively scheduled to have Allistaire admitted to the hospital tomorrow but that will be part of our discussion with Dr. Pollard as a plan for her treatment is determined.

There is so much to process.  Allistaire is sitting next to me right now, thumb in her mouth and Doggie up against her nose, rubbing back and forth so slow as she intently watches Toy Story on the TV.  I am so acutely aware that this is her last night outside of the closed doors of the SCCA (Seattle Cancer Care Alliance) Unit.  I know those double doors, the one’s that lock her away inside.  As the sun set tonight and sky was all pinks and blues and purples, my heart thudded as I knew that it would be a very long time before Allistaire would be able to be outside again.  As I closed the door behind me at home today, I wondered if Allistaire would ever enter that house again.  Would she ever sleep in her big girl bed again, the one we just set up for her less than a week ago?  Would I ever again hear the belly laughter of two sisters racing around the couches?  Too many painful questions to even utter.

Tonight there is a looming reality before us.  This time will be much harder.  This time will be much longer.  This time I won’t have Sten here, I will be alone.

Tonight I borrow these words, “Through many dangers, toils and snares, I have already come; ‘Tis grace hath brought me safe thus far, And grace will leave me home.”

I’ve never lived in a war-torn country  – where chaos and constant violence are the norm. When we lived in Seattle, I would occasionally be driving on I-5 and see tanks and other army vehicles from Fort Lewis, slowly making their way in the far right lane.  I was always surprised to discover that the sight of implements of war did not frighten me.  No, the truth is, I have lived predominately in times of peace and security.

The last 15 months have changed that.  I am on constant alert, aware that at any moment the course of the day might change radically – not because of violence outside, but violence inside.

Up ahead I can see the gate.  I slowly apply the brakes and I feel my heartbeat quicken.  Heat slinks up my neck.  I look at the paperwork in my sweaty hand and hope I have the right forms.  The car silently comes to a halt and I look up into the face of the person who will review the limp papers and I pray they will get me through.  It feels like an eternity.  You are inches from being on the other side of that gate.  But for now you are here and you know that if you don’t pass through, your pursuers are close behind.  You don’t know if you can out run them.  It feels like an eternity, this waiting.

Allistaire’s surgery went great.  She had no problems and even woke up from being under with no problems.  She watched cartoons, ate a muffin and drank her apple juice.  Her little wound has only some special super glue tape.  She’s laying on the couch now enjoying Mary Poppins.

The surgeon took a bit of skin with the lump to include in the biopsy.  He said it didn’t really look like anything alarming to him.  He thought it might be “fat necrosis,” where fat cells scar up after an injury which could occur from falling against something.  It did not look like a lipoma or subcutaneous cyst to him.  I want to take comfort in his words.  I want to hope there is nothing harmful there.  But as I read about Leukemia Cutis, it doesn’t necessarily seem like you would really see something unless it was under the microscope.  The scary part is that Leukemia Cutis can show up in your skin even when your bone marrow, spinal fluid and peripheral blood is clean.  I’m not sure if I’m understanding this correctly or not, but it seems that if this is the case, it shows the aggressiveness of the disease – as in, if you’ve already treated the bone marrow and succeeded in destroying the cells there but not in the rest of the body, the big remaining option of a bone marrow transplant may be insufficient.

Father in heaven, you know the plans you have for our lives.  With pain and sorrow I submit my life to you.  I hold Allistaire’s life with open hands.  We are yours, we are not our own.  I cling to the hope Christ had as He endured the cross for the joy set before Him.  The possible pain and agony before me is beyond my comprehension and at the same time, so is the weight of joy awaiting us.  Give us your peace that passes understanding.  Hold us aloft.

 

Ten Great Things About Having Cancer:

1.  People bring you tasty food (not only lasagna, thank goodness)

2.  People give you kind gifts life like coffee shop gift cards and gas cards, and more stuffed animals than any human should own

3.  People offer to clean your house, mow your lawn, take care of your dog

4.  You may qualify for Medicaid and get all this crazy expensive help for free (Allistaire’s treatment cost $1, 549,000.000 and we paid $3)

5.  You have a whole group of professionals who have committed a ridiculous amount of time and energy to studying and practicing their craft to come to your aid and tell you exactly what you have to do

6.  They actually give you a “roadmap,” which lays out each step of the road ahead

7.  You are given an approximate time frame of how long this horror should last

8.  Your boss understands when you need to leave early or take time off

9.  Most of the other responsibilities of your life take a major back seat and you are able to and supported in focusing on this one thing

10.  There is most often, no blame or shame for why this is happening

Most of the suffering in life does not come with these perks.  Battling cancer is full of unique horrors and woes and most forms of suffering do not actually peak in the real possibility of death, but cancer is suffering we can speak of openly.  It is a suffering people will do fundraisers to help bring to an end.  It is a suffering that people – individuals, families and communities, can rally around.  You can wear a shirt that declares you are, “kicking cancer in the junk,” – you can walk around a store with that.  People think you are brave and will randomly give you hugs in the grocery store.  You can walk with your little, or big, bald head held high.

I once, not so very long ago, said to a friend that having a dying child seemed somehow noble – like some sort of exalted suffering.  That was a mere month before Allistaire got sick.  I was hurting and aching inside because I knew a suffering in my life that I could not speak of openly.  It ripped and it tore and stung and I had no choice but to keep going.  I had to keep it together.  I still had to go grocery shopping and prepare meals, keep the house clean and be kind and patient with the kids.  I had to endure headache after headache from nights of hard crying.  I had to try to apply the eye makeup and hope it hid the pain.  There was no one to tell me how to walk forward – no roadmap and no end in sight.  I had to force my pain to stay stuffed behind the door and keep up a strong face.  Yet I wondered how to answer the question of, “How are you?”  Do I pretend which is a form of lying or  do I reveal that which is private?  No one prayed for me in front of the church like they did for the family whose daughter was in kidney failure.  There was no one to bring me a meal when hours of the afternoon passed into evening and all I could do was sit or long for sleep; so full of sorrow I was.  There was no explanation for my short temper with the kids.

These days I have a child with hair, eyebrows and eyelashes.  She runs and spins and sings and throws tantrums.  No tubes sway from her chest.  She sucks her almost 3-year old thumb and rubs her doggie’s ragged, crusty fur against her nose for comfort.  Most don’t know how far Doggie has seen her through.  Her shirt hides the pink scar on her chest.  It’s been nine months since we left the hospital. Most people want to be done with cancer.  Of course no one says that, but I feel it, I feel that everyone would feel much more comfortable if I would stop talking about it.  Ever the rushed question bound with declaration, “She’s fine, right?”  That’s behind you.  Move on.  But it’s not over.  Every single day, many, many times a day, I ask myself a hundred questions to try and determine if she is fine.  My once public suffering has moved behind closed doors.  I have to go grocery shopping and prepare meals and be patient with the girls.  There is a lump on Allistaire’s back.  It has grown over the last few months.  We’ve been watching it.  On Tuesday morning, February 19th, Allistaire will go into surgery to have it removed and the pathologist will examine it.  It may be a benign fatty tumor called a Lipoma or it may be a Leukemic Infiltrate, Leukemia Cutis.  One poses no threat.  The other is her cancer come back, showing up in her skin before her blood or bone marrow, as it occasionally does.  I may be in Seattle with Allistaire this weekend or I may be going on a nice weekend trip with my husband as we planned a month ago.

The knife, angled, lies against the rope.  Back and forth it moves, patiently, slowly, the fibers give way.  One by one they release –their tension ended.  And there it is, nearly the end and the knife cuts on.  In that strangely uneventful moment, the last fiber is severed and the weight of the rope hangs limp where once it stretched taut, constraining, binding.  I release breath I didn’t know I was holding and I feel where the pressure of the rope laid heavy on my chest for so long, so familiar was it’s restriction that freedom felt foreign, odd, strange.  Light.  I felt lighter as though some small bit of the surface of my flesh no longer laid pressed against the solidity of the earth.  There was rise; lift.  Slowly, my tongue detected it – this less-weightiness, this gap between my flesh and the land, this small space of separation.  Transcendence.  God’s hand remains firm on the knife’s handle; still wielding it’s sharp cutting.   Patiently, slowly, He cuts on.

I could not bear to look.  I could not bring myself to look over.  Out of the corner of my eye I saw it and I could not deny it.  It’s presence loomed, threatening to take over my whole view of the land before me.  Plentiful, lush, bursting, sweet, bright land.  But there, just an inch from the outside of my right foot, I see it.  It stretches out behind me and as far in front of me as I can see – all the way to the horizon.  Cavernous, black, deep, threatening, that violent rend in the earth, opening up beside me.  At any moment I could be swept in.  I only see it out of the corner of my eye but it’s presence looms, seeking to swallow me whole.  It is my black fear, deep, cavernous, threatening.  It is the place of the return of cancer.  It is the place of a love gone.  In a flash, this firm earth may give way and crumble underfoot, casting me down into that blackness so thick.  The clammy sweat, cold and hot at the same time, I want to get away from that crevasse and flee into the wild sweet beauty, forgetting utterly it’s massive reality; yet so weighty I cannot escape it’s pull.

Every instinct of my flesh commands that I flee, that I pull away.  My skin tingles on high alert that danger there abounds.  But as my eyes waver and look down, I hear His voice, sweet, clear, sounds stretched, notes pulled out transparent.  I AM down there, in the blackness, I AM there.  Fear not.  If even the worst you can imagine comes to pass, I AM there in the thick, dark, so seemingly solid and permanent.  Should you fall, should you be swept down, you will find me there.  You will not be alone.   Dare I look?  Can I will my neck to turn and my eyes to face that black?  What if I did?  What if in the place of my greatest fear I turned toward it.  What if I looked it full in the face and knew the sweet, mysterious peace of His presence.  What if there in the blackness that threatens to squeeze and constrict and suffocate, what if there was light of such colors as our mind could never conceive?

“I AM there beloved,” He speaks slow to me, cutting, knife moving back and forth across the fibers that have constrained so long they seem part of my very self.  I turn and I look there at my weighty, black fears.  I see them in detail; all of their features clear.  Another fiber releases and that space between the ground and myself grows.  I see you, my terrors; I see your ravaging, your searing, your knives seeking to gouge the flesh of my stomach.  I see your ugliness and your stench.  But there, I see something more, something like light rising on the curvature of the earth.  I see my Lord, He stands beside you.  You terrors are not all that there is.  You are not imagined.  You are not a child’s nightmare, but an adult’s reality.  But, you are not all there is; you are not alone.  Look, I can see Him.  I need not fear.  I turn toward the terrors that I might see the Lord my God, there in that very place.

My anguished fury lies silent now in my throat.  My fists, once clenched white in gripping fervor, lie spent by my side.  Where once was rage there is growing something new.  I used to shake in anger at my finiteness.  I wanted to tear my weakness to shreds and I would bellow absolute fury at God for making me this way.  How weary I was of being needy, of being at fault, of being weak.  How the cutting has stung, both great and small.  I scream out at God for the car that drives too slow when I am late, for my child that will not do what I want, for sickness and sin in my own flesh and sickness that could bring about the death of my child.  I watch as the expanse of the mountains disappear into clouds of white shrouds of falling snow, only their blue, black feet extending into the valley.  I rest, waiting for the train, whose end I cannot see as it bends back around the corner of sight. I cannot choose for the snow to fall or not to fall.  I cannot determine the speed or timing of the train. I rest and watch.  I am expectant.  I look round, looking for my Lord who does control such things.  The rope lies limp against my arm and I rest knowing I can control so little and what once made me furious I am beginning to see as gift, as grace, as love.

These weaknesses, these displays of finiteness, in concentrated form they are my terrors, what are they truly?  Are they not over and over, as Ann Voskamp describes, “the seeing-through-to-God places”?  What if rather than seeking to flee or to pile on the insulation, what if I stood firm, stood at rest, but facing them, looking them in the eye – and most mysteriously, seeing an infinite God in these finite places, a perfect and beautiful God in these marred and ugly places?  What if I were to embrace the way God made me – embrace my finiteness, hug it round because He is giving me eyes to see that through this weak flesh, through this passage, I will come to see Him.  What if I turned into the vast ocean that more acutely declares my smallness, my weakness, my inefficiencies of my self and the world I inhabit?  What if rather than fleeing that which so loudly proclaims my lack, I turned into that which, in clarifying my weakness, I see with new eyes that great and utter glorious beauty and power of a God who sees me like Hagar and hears my voice crying and proclaims His great love for me.  What if I stopped running away and ran toward my Father?  What if I harkened to that resonate, strong voice that says I AM here Jai.  Right here.  Right now, no matter where I lead your life, I will never leave you or forsake you!  What if I actually took God at His word when He makes such grandiose declarations?  Fear would dissolve.  The bonds would slip off and I would rise up.  A thousand verses of my Father’s Word surround me – a chorus of voices: Do not tremble or be dismayed for the Lord God is with you wherever you go!  If God is for you, who can stand against you?  Nothing can separate us from the love of God.  For now there is no condemnation for those who are in Christ.  For the joy set before Him – He – Christ – endured the cross.  And surely, I am with you, to the very end of the age.

Can my hands let go of that which I could never hold anyway?  I cannot get my child to walk up the stairs at the speed I want and yet my Father calls out each of the stars by name.  I am learning, because of this brutal teaching, instruction that cuts and severs and stings, I am being released from the bonds of this earthly life.  I am slowly being lifted up.  In Christ, I have begun to transcend because He was first transfigured and transcended.  He is my God and He is calling me.  Do not fear for I have news of great joy!  This child that was born is my salvation, is the way into being a child, the raising of the dead to life, the way into being welcomed into the promises.

Here is a reality I am seeing much more clearly – we all have our sufferings – sorrows public and sorrows private.  It is not just the starving in a third world country or that bald-headed child with the tubes.  It is that husband and wife, fighting for their marriage.  It is that girl fighting to make choices with her food and see her body with care.  It is that single-mom who is at an utter loss to know how to parent her raging out of control child.  It is that man who is battling to maintain his integrity at work.  It is the illness that is unlovely and whose name is unfamiliar.  It is that man who wants to believe but doesn’t know how.  It is the family who sees no way out of their financial black hole.  It may be the choice I made decades ago, echoing it’s consequential refrain over all these years of my life.  It is that woman who can only stare at the other woman with her children bouncing around her, and she, womb empty.  There is no noble suffering.  It is all pain.  It is all death, in its many varied forms and faces.

The battle of cancer is a battle to keep death from swallowing the life of the flesh, but more so, ever much more so, it is a battle of what does it all mean?  Why are we even fighting to keep this flesh alive?  Because we know it is sacred.  Not one of us doubts that fighting for life is the fight you fight with all your strength, with all your resources brought to bear.  You wipe your child’s naked flesh with the Chlorhexidine wipes to destroy the bacteria that threatens to take her sweet vulnerable body down.  You allow the poison, red, blue and yellow, to drip through the tubing into his veins because you must.  You must fight.  And that battle that is there to fight above and around and through it all is the greatest of battles.  It is the ultimate war.  We are weary. We are lost and confused.  We are angry and hurt.  We are to blame.  The way seems unclear.  We don’t know how long we must fight.  But fight we must.  We fight to save the flesh because the flesh is the dwelling place for the spirit.  It is the fight of the spirit we fight – all of us – with our many varied lives and faces.

So this I day I beg of you.  Let us be gracious to one another.  We are all walking with our weighty sorrows and struggles.  We all have our tender places, our wounds too raw, aches so deep.  And let us stand alongside one another.  Ask the question of, “How are you,” and actually be willing to wait, to stand long, to hear the response that requires courage to bring it out into the light.  Let us pray for one another when we don’t even know what to pray for, when we don’t know the name of the battle they now face.  Pray for eyes that not only see these earthly realities but for eyes that would be lifted up to take in the view of the fuller, expansive reality.  Enter the fray.  Step foot into that raging torrent.  Ask God to give you courage to walk where He leads you, whether into a land of lush beauty or into a thick, black.  Refuse to allow your eyes to only see the temporary and the tactile but let these be the means to see the eternal and the life of the spirit.

Fifteen months ago I stood at a road divided, wondering which direction the Lord would take us.  I feared the dark road – I could not image what horrors lay down that path.  That is the road we have traveled.  Sickness and death have pursued and at least for a time, have been evaded.  We stand now at yet another divide.  When the surgeon’s knife cuts through her beautiful skin and the nature of the lump, this tumor, is determined, we will know the road we travel.  As before, I plead and ask that God be merciful and allow us to turn aside from that darkness.  I am ever so much more familiar now with the dark path and its gritty details, it’s possible dead-ends.  But today I choose to face that darkness head on.  I choose and cry out for eyes that see Him in the darkness, He who turns darkness to light.  He who overcame sin and death.  He who has triumphed.  He who has already won, because He did die, He did allow His body to be cut down and His Spirit broken.  He who was raised up.  He who was transfigured.  He who now sits because He has won the ultimate battle.  I see you, you beautiful one!  I see you in the caramel yellow of the willow tree’s new growth reaching up into that perfectly blue sky.  I see you in the blue shadows of the snow drifts curling like waves along the road.  I see you in the white clouds of snow shrouding the mountains.  I see you in the gleeful gleam in Allistaire’s blue eyes.  I see you in my sister’s kindness to me.  I see you in the faces of my brothers and sisters who wage on.  I see you.  I am looking for you.

Jeremiah 29:13 & 14  “then you will call on me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  I WILL BE FOUND BY YOU, declares the Lord”