Tag Archives: Seattle Children’s Hospital

Feb3

Numbers

Posted on February 3, 2015 by Conglomeration of Joy

This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead. I am daunted by the incredible number of details that all have to fall in place. It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails. They may open. They probably will. Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us. The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut. A few comments in recent days have opened my eyes to just how serious her typhlitis was. On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice. When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery. I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in. When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen. She sure did a good job of not letting on about how precarious her condition was. Apparently, had her bowel perforated, a likely uncontrollable infection would ensue. This is in fact how my grandmother, Lillian, died. She died fast. I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died. I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine. Thank you Father that you preserved her life. Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes. Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart. Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for. Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid. They are doing everything in their ability to ease the burden on her heart. As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.” She has continued on Milrinone. Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning. A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it. Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect. “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing. We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach. It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN. It is very possible she will get a feeding tube given how small her stomach will have shrunk. The feeding tube would allow constant low level food. This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed. Oh well, something else new to learn. Her blood counts remain in decline. Today she is getting platelets (which she seems to need every 2-3 days) and red blood. Her white blood count remains zero. Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again. I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed. Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th. I will have an Arrival Conference, the next day on the 18th. The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant. She will likely have a bone marrow test February 19th or 20th. Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th. Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th. This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away. She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa. There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away. This whole process is taking a month longer than I had ideally hoped. Yet this may be for the best as it gives Allistaire lots of time to recover. Her heart, marrow and gut have been severely injured. This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad. The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week. This time will also allow for finalizing details of payment for transplant. Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them. It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials. This boggles my mind. Her last transplant cost $1.1 million. Sometimes I shudder at what Allistaire’s care has cost. I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries. It is not fair that so much is given to her. The Super Bowl helped add a little perspective. Thirty seconds of Super Bowl advertisement time costs four million dollars. That’s about what it has cost to keep Allistaire alive the last 3 years. She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time. What a world.

Another steel gate is in the hands of the donor herself. She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant. She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents. There is not one single thing in the universe I can do to impact her decision. In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing. So many gates barring the road before us. Most of this post was written yesterday morning long before results from Allistaire’s echo came in. The day ebbed by at a painfully slow pace. I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart. Yesterday the weight of sadness lay heavy. Day became evening and then night with still no word. The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results. Corrine, the resident, came in just before 9pm beaming once again. She made the cardiologist repeat himself several times to be sure she heard the number right. “The ejection fraction is 45,” she said with nearly uncontainable smile. FORTY-FIVE??!!!!! “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy. God, who are you? Really who are? I know your face is just beaming, beaming with joy, with delight to bring us delight. So what you’re saying, Lord, is that you have her in your hands? What you’re saying is that this is not hard for you? We need 45, well here’s 45. Thank you Lord, Thank you. I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here. This is not how I envisioned this round of chemo going. The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us? This seems too easy. We never have it this easy. Three weeks just to hang out and wait for her counts to come up? Well, show me what you want this time to look like.” Two days later she was in the ICU. Today was a delightful day of progress. The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents. Then through immense protest and fear, the IV in her foot was removed. These days she is literally terrified if you come near her with anything. She knows she gets a shot every night and has had many painful experiences in the last two weeks. Even her bath elicited cries of, “I’m scared, I’m scared.” It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny. Lastly, we changed her dressing. I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I. This is Solveig’s view on Allistaire’s world. It sobers me. I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit. My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

Jan9

All together different

Posted on January 9, 2015 by Conglomeration of Joy

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Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath. Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand. The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence. And so it is, we reenter the world so strange, yet so familiar it has become beloved. There a whole cast of friends surround us and an altogether different language is spoken. Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.

We all know what we’re doing here. We’ve come to slay, to annihilate, to wield weapons of mass destruction. We have come to destroy a destroyer. Ushered down the hall to the very end, we enter our new room, Forrest 7A:308. This is the MIBG radiation room. The room is lined with lead. Two doors, one lead, protect those on the outside from what typically takes place in these few square feet. It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide. So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease. First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.

I slept well last night and was simply ready to get this show on the road. This round, this entrance into the constraints of the hospital this time feels all together different. I walked through that door with hope. There was none of the dread of the last round of chemo. It worked and there is the hope and expectation that this combination of chemo will continue to do the same. Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come. Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s. Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.

So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us. Let us make the most of these days! Let them fill and swell with all the Lord sees fit. Let us seek diligently to love each face that enters this room. Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us. God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness. We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose. Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will! But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow! That is my joyous hope. This is what invigorates my spirit. Let me not deprive myself and others of the bounty that He intends!

For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire! You know what I want to see God? I want to see you raise the dead! I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness. That is the miracle I’m asking for! Do you hear me God?! I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ. Father, who am I that I should lay down my life, what is my life, but Lord I do, I do! I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence. Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are. And Father, show me more of yourself, more, more! I want to see new facets of your face, new angles of light, even shadow. Lord, you are all together beautiful. May I greet each day with this deep, swelling joy.

It has been nearly three weeks since Allistaire and I left the hospital. I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break. It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty. Sten and Solveig came out for a week over Christmas and we had such a great visit. The girls played and played and played and giggled ceaselessly. They have such a better time interacting outside of the hospital, without all the constraints. Uncle Jens and Aunt Jo also came out for a visit from Bozeman. We made the most of good weather and went to various play grounds as often as possible. Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents. All in all it was all we could possibly ask for with our time out of the hospital. It wasn’t home and that’s a bummer, but boy did we love the freedom.

This is our second 39 day round of chemo, identical to the last one. She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering. Twenty-eight days is the standard estimate of how long this drop and rise process takes. Day 28 will be February 5th. There’s nothing magical about February 5th, it’s just an estimate. Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG. I will include below some pictures of her last PET/CT. I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan. The computer overlays/combines the CT and the PET scan giving more complete info. And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view. The brighter the image on the PET scan, the more metabolically active is that location. There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected. They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas. I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan. I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT. They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan. I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.

Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy. I am not sure if there is additional testing that needs to be completed. Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs. Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely. There may also be some period of time where they want her blood counts to recover more. I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule. I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing. She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books. It is exciting to step nearer to that mighty goal of transplant!

Dec18

Pounding Anticipation

Posted on December 18, 2014 by Conglomeration of Joy

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Growing up, as the days grew near to Christmas, my brother, Patrick, and I would be wild with excitement. In the last few days preceding Christmas, I would abandon my room and take up post on his top bunk bed, going to sleep at night dreamily gazing at fuzzy orbs of red, green, yellow and blue reflecting against the ceiling from the Christmas lights lining the roof outside. On Christmas Eve we were so giddy we could hardly fall asleep and seemed to wake up repeatedly only to slump back to bed once we realized it was still the middle of the night. In the final hours, before the time we had negotiated with our parents, we would lay on the floor, chins in hand, staring at the clock with the red digital numbers and faux wood grain siding. Our joy and anticipation of what lay under the Christmas tree downstairs was uncontainable. We took great care to contemplate all the joyous possibilities.

The last several mornings I wake with a shocking pounding of my heart. I check my phone, it’s 4:36am, it’s 3:56am. I lay there with eyes wide and the disturbing sensation of a thump in my chest that seems too palpable. I tell myself to go back to sleep, it’s a long time before 6am when I will rise and that will be the time to get her labs. Even as I lay down at night, I know the morning is coming. There is some clicking sound that keeps waking me. I am convinced the nurse is in the room with the familiar click followed by the sound of the blood pressure cuff expanding telling me 6am vitals are underway. It’s the time of reckoning. I lay utterly still, ears alert, straining but hear no more sounds. It’s just the refrigerator. It’s not even close to 6am. I force myself to go back to sleep. My bladder demands I wake and as I round the corner into the bathroom I scan for a white sheet of paper – maybe the nurse printed labs early and it’s lying there waiting for me.

Allistaire’s room is decked out in Christmas joy – tinsel, ornaments, pink tree and battery operated Christmas lights – some cheerily blinking their bright colors, others transforming slowly from one array of colors to another. But just underneath that holiday cheer, underneath the sparkle of snowman tummies and reindeer hanging from the IV pole, the anticipation courses in an altogether different direction. While it seems all the world around us scurries about in final preparations for the biggest holiday of the year, our life ebbs one single day at a time, one lab draw to another. One 6am to the next 6am. Christmas is a blank day on the calendar. It lies in an altogether different realm. Christmas feels more significantly like next Thursday and Thursday dwells on the other side of Monday.

Every day in rounds the resident doctor repeats the same line, “awaiting count recovery.” That is our plan of action. We wait. Here we are on the 30th day of this round and Allistaire’s ANC (Absolute Neutrophil Count) has been on the rise. Her marrow is recovering. Yesterday it was 157 and today it was 171. It needs to be 200 in order to have a bone marrow test and in anticipation of this, she is scheduled for her bone marrow tomorrow morning at 11:15. This time they will take samples from both hips in order to ensure a sufficient sample. In the past her marrow has been so fibrotic, it has been difficult to even get enough aspirate to test. They will also be giving her intrathecal chemo which is chemo placed directly into the spinal fluid.

There are essentially four tests by which her cancer could reveal itself – in her peripheral blood in the form of blasts which would be seen in her labs, in her bone marrow as seen under the microscope by a pathologist and/or through Flow Cytometry, and/or in the PET/CT scan which is scheduled for 8am on Monday. Each day presents another opportunity for the unseen to become seen. Each day I scan down the long list of items quantified, hastily pursuing the one number that matters above all else – Absolute Blast Count. Our whole life feels balanced on these tiny pinpricks of numbers, these infinitesimal objects that determine the course of her life.

It’s finally 5:45 am and I reach over to turn off my alarm. I do not spring from bed. I do not slowly rise. I lay there, still, looking for the face of Christ, calling out to Him. I survey what I know to be true about Him. I consider His Word. I reflect on how He has cared for me before. I fix my heart on His promises. It is becoming less hard to yield. But the thought of losing Allistaire has lost none of its sting, its slice, its atom crushing force. My heart pounds and I gather on my armor, knowing I may be run through with the blade, but miraculously, I am incapable of utter defeat. I carry the quiet power within me, conscious of the ripping pain that can still penetrate. My feet hit the cold linoleum floor and the day has begun, but the battle started while I lay still.

So much bounty. “You’re on the VIP mailing list Jai,” Marie, the Unit Coordinator, tells me. “What does that mean?” “Oh, you get so much mail, more than anyone else.” The packages pile up on the floor. The envelopes keep coming filled with words of compassion, love, delight, faithful prayers and tangible helps. Every need we’ve had has been met, not just sufficiently, but abundantly.

Allistaire herself, is also doing remarkably well! As of today, she has finished her 14 day course of the antibiotic, Cefepime and ethanol locks on her lines have been discontinued. This alone means a far quieter night that now only requires vitals and labs. Because she is such a rock star at taking all her meds by mouth and drinking her required 44 ounces a day, she has also been taken off IV fluids and is completely detached from her IV pole. What glorious freedom this is! Allistaire’s appetite continues to improve and she gained .3kg over her intake weight. Perhaps most phenomenal are the results of her Echocardiogram and EKG. All her cardiac function is doing excellent, which is especially amazing in light of the chemo she had, mitoxantrone/blue thunder, which is well-known to be hard on the heart. Her ejection fraction prior to this round of chemo was 65, now it is 63. Her shortening fraction started at 33 and is now 32. I am in awe of how well her heart has held up thus far! God has not stopped pouring, and I mean literally, pouring out His blessings on us! Allistaire goes throughout her day with silliness and joy, ever in hopes of playing tricks on the staff. She rides her bike around the Unit unfettered, pink, yellow and blue butterfly wings aloft behind her, vampire teeth firmly clamped in her mouth and my constant exhortations, “Slow down Allistaire!”

I think it is this radical contrast of such a thriving, vibrant being and the real possibility of the life being drained from her by cancer that causes such dissonance in my heart. How can the two possibly coexist? But this is what I face each morning with labs, as I wait for each test result – the beauty of her bright smiling eyes with the knowledge that Beth has gone home without her son after just shy of a year in the hospital and three bone marrow transplants. The living can die. We are not exempt. God does not promise to open the doors before us.

Allistaire and I watched a Disney movie about a grizzly bear and her two cubs today. We just decided we liked it so much, we might watch it together again tomorrow and this time it won’t be so scary because we know the outcome of the story, the big mean male grizzly does not find the sweet little cub and tear him to pieces. The story has a happy ending. I dwell within my story and I don’t know all the twists and turns of the plot, but my Father in Heaven has told me the ultimate outcome. It has a happy ending, at least, in the very end it does. Sometimes the anticipation caused by ever balancing on a nimble edge over a cliff is exhausting and all-consuming. I may fall, I may not. It is time to get to bed and face another set of labs in a few short hours. I may fall, but I won’t be dashed to pieces. My anchor is in the Lord.

Dec14

Black Waves

Posted on December 14, 2014 by Conglomeration of Joy

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“To swim in the ocean, you dive through the waves as they come at you,” my friend Matt tells me as he points to the horizon and the relentless pounding of ancient force.

I do my best to dive through the first wave, but I don’t quite make it and the curling power forces me down. My body is tumbling in the cold water. I try to get my footing on the sand that gives way. Breath. Breath. I see the next one coming and before I can recover, it slams me down again. The waves kept coming, utterly oblivious to my plight. This must be what it feels like to be drowning, but that won’t happen. It can’t happen, right? After three or four waves I finally scrambled out of the pull of the waves, tired and shaken on the sand.

Matt is dead. The incomprehensible happened. And it’s happened so many times since.

My friend and her daughter are back on the Unit. She tells me how little there is left to try, how she must hang on for a clinical trial she hopes to get on, but it may not be until January. She walks slow in the hall, bearing up under the pain that seems to be everywhere. It has not mattered that her disease gave her an over 80% chance at survival. Her she is.

I saw a dad I know the other day. He and his daughter had driven hours to come visit one of her friends whose cancer keeps returning in the lungs, a bone cancer. This is how it goes and when it does, it almost always spells the end, eventually. He tells me of some of her other friends, this one at home on hospice to the north and the other to the south.

Hospice. “They went home on hospice.” Has a word ever cut so brutally. It is like a dirty, ragged knife, cutting slow but deep. It is tearing through your gut and it is so horridly slow but you can do nothing to stop its course.

I look at my friend and her daughter and think, here we are, we have at last become, “those people.” Those, that even within this small harsh world, have become “other.” We are the lepers. We are the stories to steer clear of. We are the living, breathing, shuffling statistics we have all sought to disregard.

I debated when my alarm went off this morning whether or not to give into the desire for sleep, but rather determined to get up and climb up and down the overly warm stairwell as some attempt at excercise. The nurse came in as expected for 6 am vitals and I asked her to see Allistaire’s labs.

“They’re all normal,” she said, “but the ANC isn’t back yet.”

The sickle came swift and sliced through my legs and left me collapsed.

“That means there are blasts,” I stammer and my eyes scan as she gets to the right page on her computer and there it is, everything is back now.

Absolute Blast Count: 10; Absolute Neutrophil Count: 0

Her ANC had been at zero for sixteen days and then on Friday it peeked up at 8. I was so relieved to see no blasts. Yesterday it was 20 with no blasts. Every day in rounds the resident repeats the same refrain, “awaiting count recovery.” That is what we’re here for. Get the chemo and then wait and wait and wait to see if it worked.

It hasn’t worked. The chemo has failed to control her disease, much less to suppress it to get into a position for transplant. It only takes the sighting of those few horrific blasts to know there will be no transplant next and what’s next requires a move to Denver. I imagine we will still have to wait until her ANC gets up to 200 to do the bone marrow test. You have to have enough recovery of the marrow to get a clearer idea of the amount of disease. What is clear is that her cancer is recovering along with some healthy cells.

I should also update the news that there is no match for a donor in the United States. Not one. She needed a U.S. donor to be able to get the Naive T-Cell depleted transplant that Dr. Bleakley is overseeing. It is just baffling and hard to imagine that in the whole of the United States there is not one person who can offer Allistaire the cells she would need for another chance at life. Please, if you are not on the registry, ask yourself why not? How often are you given a chance to save someone’s life? This is not abstract. This is as tangible as it gets! You haven’t had the time yet to go online to check it out? You’re afraid of the pain? Please, are these reasons to deprive someone the chance at life? So many have said they love Allistaire, they are praying for Allistaire. Is any child less worthy of life? I asked Dr. Bleakley if they could do another search for a U.S. donor if we ended up having more time before transplant and she said it was a matter of very diminishing returns. But you know what? It only takes one person to be a match, ONE. You could be that one person. Click HERE to sign up to be on the bone marrow registry. And please pass on this appeal to as many as you can.

The last two days have been pretty wonderful with Allistaire. I wish you could see her bright face and mischievous twinkle in her eyes. “You distract him,” she hoarsely whispers. “Connor, I think there may be dragons outside Allistaire’s room. Can you go keep a look out?” Connor, the CNA, joyfully plays along, and Allistaire speeds with IV pole in hand from bathroom to bed and throws the pale blue covers over her head. I cry out, “Oh Connor, where is Allistaire? I fear she has been eaten by the dragons.” The blankets wiggle and giggle with her uncontrolled delight. She wants to play this game over and over. Her appetite has been better and eating has become much less of a struggle. It still takes about two hours per meal but at least now she is getting in a reasonable amount at most meals. Her weight only dropped point two kilograms over the week that she didn’t eat much. She has loved having Betsy, the music therapist come by and sing songs together and play instruments. Two sweet young ladies from the ministry of University Presbyterian Church, Side-By-Side, came and played with her Friday afternoon. She absolutely loved having them and was desperate to have them stay longer. They promised to be back in seven days.

We’ve gotten into a little routine she loves. When I leave either in the morning or at her nap time, she whispers with glee, “you go over there by the curtain and I will tell you things.” So I obey and go stand at attention by the curtain. “I love you and I hope you have a good time exercising (insert whatever activity I’m off to do), and I’ll see you after my nap.” Then she blows me kisses and I respond in turn, “Allistaire, I love you, I hope you sleep well, and I’ll see you when you wake up.” I obnoxiously blow millions of kisses. Her eyes, so bright with happiness and her sweet, little voice tilting up and down with her words.

No matter how my times I have bent my knee before the Lord, submitting to whatever His will might be in her life, in my life, in our lives, I don’t know any better how to let her go. I have made no progress in my ability to know how to let her go. My whole being soars and stretches with love for her. This little girl becomes only more and more precious to me. And I just can’t comprehend someone so wondrously alive being dead. She is no different from millions of other children who have been lost. She is no more valuable than any other human, any other mom, sister, dad, grandparent that has died. But these millions upon millions of deaths do nothing to diminish the loss of her. If she dies, it will take all of her. She will be gone from this life. I see all that we’ve been given, these years with her, even these three whole years since she first became sick. I see how fortunate we’ve been to live in this time and in this place, we have been given so, so much. I see the overwhelming kindness of so many people, both that I know and those we’ve never met. I look at the Lord and I know I will see her again. I believe in the good that will come. But here and now, her loss would be loss. Her gone would leave a gaping hole. This life will no longer contain that voice, those bright eyes, that laugh.

I know I must go on, putting one foot in front of the other, going through each step that must be taken. I am asking God to hold me up. I am asking God to give me moments of joy in this midst of these crashing black waves. I will keep my face to Him, but it is a face streaming with tears, agony of heart, gasping of breath. Lead me by your hand down this road Oh Lord. I cling to you. I may even need you to carry me, I don’t know that I can will my feet to move forward into that darkness.

I cling to your promise. “I am in that dark place, Jai. You will be found my me. I am the God that turns darkness into light. I am the redeemer God.”

Nov21

I Choose to Worship

Posted on November 21, 2014 by Conglomeration of Joy

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Perhaps what is the most strange is how very normal this all is. It is like the song on the piano you have played for years – your fingers know what to do without the necessity of thought. Your body moves in a constant sway from years of rocking babies. Circles round and round. Meal time has its own routines. Take a bite. Take a sip. How many millilitres is this? Take a bite. Take a sip. Threats to turn off the movie. Hang the chemo wearing the blue garb. A second nurse checks. End of Infusion. Flush. End of Infusion. Alarming pump demanding attention. Next chemo. Every day a bath with the protection of parafilm, press-and-seal, blue tape and finish up with the warmed Chlorhexidine wipes. Another lap around the Unit on the bike, peering into windowed doors trying to guess at the lives within. Blood counts fall. Transfusions anticipated. Round and round the circles go, small and wide. And the faces come, one after the other, familiar, loved, with eyes slanted down in sorrow and smile on lips at the sight of a friend. Out the window I see my old dorm from college. The six cypress trees stand as they always have, clustered like tall girls, ever silhouetted against sunset. Like a strange attractor in chaos theory, my life keeps circling back to this place.

We’ve settled into a most lovely room, one of the best I’m told, 218. The view stretches wide out to the south beyond a sea of trees clinging to fall, to the lake and off in the clouds, that mysterious looming form of Mt. Rainier, cloaked behind clouds. I already know the drawers and what fits where. I ask for more of the barf buckets to organize socks, underwear, snacks and miscellaneous utensils, straws and cups. The little green pot of fake orange flowers sits on the table, reminding us of a world outside that bears such dangers as fungus and bacteria and the passing beauty of plant life, ever dying and being reborn.

The hand of the Lord is evident over and over in His very sweet and tender provision. Here, Jai, here is an activity plan for Allistaire. She may never get out of contact isolation because of VRE, but you may escort her through the halls of the Unit as you don the pale yellow gown and blue gloves. Just don’t lick the walls. Check. Christy, the Unit manager, joins me on one of our walks and asks if there is anything they can do to help me in our stay. She jots down a few notes of instructions for nurses so I don’t have to repeat the same thing every morning and nap time. We prioritize clustering care primarily at night. I sleep well, getting a few three plus hour spans. At 2am, the nurse and CNA coordinate their actions in the fastest bed change the world has known. It really was Youtube worthy. The massive hydration that comes with chemo got the best of her. She thinks she was just sweaty and won’t be convinced she wet the bed. They pound out vitals, eye drops, meds, check the dressing, measure the urine and labs.

“Life doesn’t have to be perfect to be wonderful,” so says my toiletries bag. It preaches to me every morning.

I have been cut off from the life we had, the life we tentatively, tenderly hoped would last. I am cut off from common and desirable achievements. I am forced into a position of need. I must ask for my food to be heated. I ask for milk, for cups, for wipes, for towels. I ask for clarification on the difference between the MLL (Multi Lineage Leukemia) gene rearrangement and Mixed Lineage Leukemia. I am ever asking, holding out my hands in need. I can only ask for daily blood counts and watch as something outside myself fights the beast that threatens to tear away my child’s life. I can only watch the strange dark blue of ocean drip down and flow through the tubing into her veins.

My heart is not proud, Lord,
my eyes are not haughty;

I do not concern myself with great matters
or things too wonderful for me.

But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.

Israel, put your hope in the Lord
both now and forevermore. (Psalm 131)

It is not within my grip to decide her course. That is the Lord’s burden to carry. As for me, I am entrusted with kisses on the forehead, light sleep that attends to small moans and cries, to encouraging another bite, the tracking of fluid intake, attending to the course of the Chlorhexidine wipe as it circles her flesh to fight invaders, holding lines as we drive the IV pole to the bathroom, making sure Doggie doesn’t fall on the floor, clean clothes, brushed hair and teeth, encouragement to submit to the nurse with the eye drops, saying no to another movie and suggesting an activity, reading books, ears attentive to her words, stories and songs, standing in the circle of doctors, being alert to all her steps forward in this tedious process of conquering this ravaging disease that is clamping out the life of little Howie down the hall. So very little is mine, but I am determined to carry this responsibility with great care and honor that I should be asked to walk these days with her.

And above it all, on every side and saturating every act, I choose to worship. The Lord set the Israelites free from enslavement so that they might worship Him. That is the whole point of freedom. That is life abundant. To know the Lord is to worship Him, to blush and bow the head at His unspeakable beauty, to stretch back the throat and raise hands to the sky, to feel your whole self, every cell pressed forward in adoration of a God who defies our finite logic. He has enslaved me to this place and this disease that I might worship Him. He has constrained me and cut me off so that I can stand from a different vantage point, so I can witness Him from another angle.

Down the road from our house there is a sign that comes into view as you round the corner. It is a historical marker that tells of Lewis and Clark coming through this very place on their journey to explore the west, to report back about this land so unknown to those far off in the East. They told of mountains of such scale that they defied comprehension. Likewise, Thomas Moran provided the first glimpses of the colors and landscapes of Yellowstone which seemed only possible in fiction. I am certainly not the first to enter this land in which I now dwell, but I feel compelled to report back, to describe the colors of this place. To be “a witness,” to “testify,” conjures up highly undesirable connotations in my Christian experience. They are words from which I have always fled as they raise images of door to door salesmen. But I can’t help myself. I cannot keep my mouth shut, I am compelled to testify. I am compelled to lend my voice as a witness. The colors of dark, of black, red and grey cut and burn. The smells sear into my memory. But so too are there flashes of translucent purple, liquid honey yellow, tender bright new green and deep, deep blues of refreshing. This is my frontier. This is my land for exploring, of gasping terrors and vistas that dazzle so utterly as to render silence and gaping mouth.

There is so very little to put my hand to. But I can do this – I can keep my eyes wide, my ears alert, my heart open, throat vulnerable, palms outstretched. I can go on asking and asking. I can be in need and delight as filling comes. I can open my mouth and speak. I can cry out – “Father, Father come back, oh don’t tarry, oh don’t hold back, do you see what horrors happen here? When will you return and bring healing. When at long last will this suffering cease? Don’t tarry, don’t delay. Mercy, mercy Lord. I call for your mercy. I boldly enter the throne room of grace and in the name of my savior Christ Jesus I call you Oh Living God of the Universe, oh You beginning and end, You alpha and omega, I am calling for You to be faithful to Your name! And with smile that my flesh can’t contain, I can with faltering voice and lacking eloquence, declare the beauty of a good God whose good explodes that word in infinite dimensions and proportions because He simply will not be constrained by me and my little ideas and understanding. I will walk through every day and every circle small and circle wide and ask that He show me His face, that He hold me up that I might see Him from valleys low and rock faces high and sweeping. I want to see you Father in storm, in quiet clear dawn, in approaching evening, in forest glade and in desolate wilderness. I have witnessed the Living God, the mysterious God who lacerates and binds up. I choose to worship. And this is worship: I choose each day to apply my heart, hand and mind to the work you have given me – to love Allistaire and to love every nurse, doctor, CNA, Unit Coordinator, Environmental Services worker, Starbucks employee and person that I pass in these halls with a love I ask The Lord to continue to grow. Make my face radiant Father as I lift my eyes to You!

A couple little details: The pictures showing Allistaire’s lines with blue is the Blue Thunder chemo (officially Mitoxantrone). She’s completed 3 out of 5 days of chemo and is doing well – no throwing up, slightly decreased appetite. Her fatigue has increased which means we’re back on the old schedule of a nice long afternoon nap. All her labs look good. The blasts have not reappeared which is to be expected as her blood counts drop. Today both her platelet count and hematocrit were at about 25. She will get red blood when her hematocrit reaches 20 and platelets when they reach 10. At home she had just finished all of her meds with the exception of Enalapril for her heart, vitamin D and Multi-Vitamins. She continues on these but now also has Fluconazole (anti fungal), Bactrim (antibiotic) and Allopurinol (helps clean out all the cancer cell gunk that spills into the blood during tumor lysis/death of cancer cells). Every four hours she gets eye drops to prevent complications from high-dose Cytarabine. The picture of Allistaire with the other girl is our friend Piper who is now 10. She was diagnosed with AML two weeks after Allistaire back in December 2011. She relapsed in November 2012 and got a bone marrow transplant in February 2013 and is doing well. Lastly, I have included a few old pics just to lend perspective. Note the same pink helmet from first diagnosis and a couple picks with Piper from diagnosis and first relapse. Only four more days until Sten flies in and five before Solveig, JoMarie and Lowell get here. We are excited!!!

Nov18

Dread, Hope, Dread

Posted on November 18, 2014 by Conglomeration of Joy

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I 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

Nov12

How to Help – Round 3

Posted on November 12, 2014 by Conglomeration of Joy

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Sten and I sincerely appreciate all of the many inquiries and offers to help us in this challenging time. Many of you have already helped us so much and continue to offer more.

One thing I feel compelled to note, is that every single time you reach out to us, to cheer us on, to cheer us up, to say that you’re thinking about us, that you’re praying for us – all of it is so appreciated and spurs us on. Please do not get discouraged if we do not respond back to you as quickly or frequently as you might like. Please extend us grace. I know a lot of people imagine we sit around in the hospital all day, but it is surprisingly busy and because our lives are literally consumed by the tedious, unrelenting fight against cancer, sometimes all I want is 30 minutes to veg out on a movie.

The other more important point is that you should never stay silent because you feel your words are lacking. You are right that your words are insufficient if you expect that your words can make this all better and fixed, but we know that is an absurd goal for mere words. But wrestling and groping to put words to your heart is an action that in itself demonstrates great love toward us. When we put in the effort to try to pin down these immense feelings and aches and joys, we possess them more, we take ground, we gain ownership, we are more full and that is a blessing not only to us, but to yourself and it increases your ability to love others as well. So, don’t think your words have to look all pretty, just try and that will be a bounty to us that far surpasses words that feel so small.

Lastly, life here at the hospital feels like a tsunami has carried us away from our home, our life. While we appreciate all of your well wishes toward us, please don’t cut us off more by depriving us of the joy of knowing what’s going on in your life. If you and I have a relationship, and you are not simply an onlooker, know that relationships are two-way and I still really care what’s going on in your life. Don’t hold back the details because you think you’re trials don’t compare to ours. Yes, our reality lends perspective, but we all have joys and challenges, extraordinary and ordinary, and I want to hear about it. I want to know about the weather back home and what you did last weekend. Send me a text every now and then of that great big sky or snow sticking in your hair.

Here are a few things that would be super helpful:

Pray for us
Text or call us up on the phone and even if we don’t pick up or call you back, know that we have felt the love
Send us a card and better yet – a picture of you to remind us of all those caring for and supporting us
Gas cards (Costco, Exxon)

For Sten and Solveig specifically:

Bring Solveig and Sten a meal. We have set up an online meal schedule which will give you all the details. Go to “Take Them A Meal”
You can then sign up to bring them a meal on a Monday or Wednesday. Please look over what other folks are bringing so they don’t end up eating the same thing for a week or two straight. Please note that Solveig is allergic to ALL NUTS so please be careful to avoid including nuts, even things like peanut oil.
If you’re not much of a cook or in a hurry but still want to help out, a gift card would be great (Co-Op, Papa Murphy’s, Town & Country, Ale Works, Pizza Campania)
If you have other ideas of how you may want to help, please contact our beloved sister-in-law, Jess at (406) 850-3996
Sten & Solveig’s mailing address in Bozeman: 14176 Kelly Canyon Rd, Bozeman, MT 59715

For Allistaire and Jai specifically:

Please don’t send stuffed animals, blankets, crayons, makers, coloring books or sticker books = we already have SO many 🙂
You can sign up to bring Jai a meal on the “Take Them a Meal” website. Allistaire will have her food provided through the hospital.
Gift cards to local grocery store and restaurants (University Village, QFC, Pagliacci Pizza, Metropolitan Market, Starbucks)
If you want to send something to cheer up Allistaire, here are a few ideas: mixed CDs with happy music, small toys, lip gloss, small art crafts, happy decor for her hospital room
One thing I’d love is a few great DVDs that help her learn her ABCs (FYI: I think we have all the Leap Frog options at this point. Thanks!)
Address for Allistaire & Jai: Ronald McDonald House, Attn: Allistaire Anderson, 5130 40th Ave NE, Seattle, WA 98105 or starting 11/19 we can also receive mail at the hospital: Seattle Children’s Hospital, Attn: Allistaire Anderson, 4800 Sand Point Way NE, Seattle, WA 98105

If you want yet more ways to help, have I mentioned that you can donate blood and sign up to be a bone marrow donor? This is a gift that not only blesses Allistaire but many others as well! If you do donate blood or sign up for the registry in Allistaire’s honor – please make a little sign saying so and send me a picture of yourself in the act so to speak!

To donate blood in Montana: United Blood Services

To donate blood in western Washington: Puget Sound Blood Center

To join the bone marrow registry: Be The Match

Do you just have more money than you know what to do with? Here are three phenomenal places you can give to that directly support Allistaire and both children and adults with cancer:

Seattle Children’s Hospital (of the $3,800,000 dollars spent on Allistaire’s treatment so far, the $600,000 that insurance did not cover has been covered by the hospital’s foundation)

The Ben Towne Foundation (aims to create targeted therapies to cure pediatric cancer without the use of chemotherapy and radiation)

Fred Hutchinson Cancer Research Center (to whom we are indebted for Allistaire’s last transplant, Dr. Greenberg’s lab which we are holding out hope may offer amazing modified T-cells to target Allistaire’s cancer after a 2nd transplant, and just lots of amazing science that benefits a wide range of cancer patients)

Thank you immensely for all of your kindness, generosity and love toward us. You certainly diminish the weight of our heavy load and add joy to our lives!

Nov10

Roadmap

Posted on November 10, 2014 by Conglomeration of Joy

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I’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

Nov4

Press On

Posted on November 4, 2014 by Conglomeration of Joy

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This is my 200th post on this blog. The 200th time I’ve sat down before these black keys, trying to look back over the days and hours, to look into myself and ask what I feel, what have been the colors of this day, what was the angle of light and shadow. What were the moments that seemed to sum up the experience, this strange realm in which I dwell. I look up and out, expecting like a Montana sky to see far, to feel the refreshing of expanse, to relish in the way it dwarfs me. Somehow to feel so small seems to satisfy, perhaps because down deep I am so keenly aware of my smallness, my finiteness. But the sky, oh sky, whether by day with extravagant drape of blue or stormy steel of cloud underbellies, or that singing silence of stars – sky at dark – the sky gives my tiny self context. I am swept up within and so it is when I lift my eyes to The Lord.

Allistaire was still asleep in the recovery room after anesthesia for her PET/CT scan and so I slipped out to use the bathroom. Through the window of another room, I caught a glimpse of a woman, head turned far to the side and eyes closed with an expression of pain. Then came the cry, that distinctive cry of a newborn, clutched in her arms as the two nurses surrounded, attempting a blood draw or an IV. I remember holding Solveig when that first needle came and then another and another, to vaccinate her against diseases that cripple and kill if not protected against. My tears ran hot as I pressed her body against my chest, as she flexed in pain. Brokenness, we are born broken, vulnerable.

We were to meet Dr. Gardner along with Ashlei our social worker and a member of the PAC team (Pediatric Advanced Care Team) up on Forrest 7. Forrest 7 is the Cancer and Blood Disorder Unit for children under 13. The older kids are one floor up. As I walked down that long white corridor to the Unit, memory upon memory threatened to swamp me, like dark waves pressing up the sides of a little dingy. I looked out the window as we passed, the leaves turning, but the same scene regardless of the season. The smell hit me next and I dreaded walking through that door. When my eyes first opened this morning as weak light entered the room at Ron Don, I wished to somehow prevent the coming of this day, as though eyelids open would welcome in a torrent of sorrow. To walk through that door was to submit to what was coming, to acknowledge the reality of all this. For I have already walked this road, I know it intimately, all its contours and paths. Today felt like a sentencing, knowing we would sit across the table from Allistaire’s doctor and be handed the options set up against the realities of her disease. It must be the exaggerated difference of what I see with my eyes when I look at her and what all these tests declare, that makes swallowing what’s to come so very difficult. It is like putting one foot in front of the other, willing yourself to hand yourself over to be thrown in the lion’s den. You have been there before and only narrowly escaped, but with your flesh tattered and raw. The wounds have really only begun to heal and you are thrust back into that place.

I know the trees will soon lose all of their leaves and we have months ahead of us of dark grey and cold wet, this Washington winter. Immediately sun on snow and the crisp, invigorating freshness of winter in Montana rushes into my view and I grieve knowing this little girl who talked about skiing all summer will most assuredly not ski this season, if ever again. There are a thousand wounds of what will not be that slash and slash. I circle and circle these sorrows, perhaps because they are easier to bear than that center of deep black, that greatest loss. My world has constricted once again. So narrow is the focus, yet so looming. Again the mission of getting her into remission in order to do another transplant. While her bone marrow only shows 0.9% leukemia, the biopsy of her lymph node and bone both confirmed leukemic involvement outside of her marrow. They were unable to do Flow Cytometry on the bone marrow aspirate of her arm because the marrow was too fibrotic, but the old school method of using stains confirmed the presence of leukemia cells. The PET/CT scan also revealed a broiling terror no eye could have guessed. Outside of her marrow, the PET scan revealed leukemia in her right proximal humerus, right axillary lymph node, left distal femur, anterior compartment of bilateral thighs and in her left hand. There is also a lymph node in her left groin that may be leukemic, it is not clear.

It’s her little sweet left hand that hurts the worst. Somehow looking at that small hand, knowing what is eating away at it inside, oh, it feels like it’s stealing away my child, this girl who is so full of life. And when the sobs come it seems my cranium cannot contain the agony of losing her, the pressure unrelenting behind my eyes. And there are the words I know would come, must come. “We will give her chemotherapy and while there is a trial for transplant without remission she may be eligible for, we will have to discuss the worth of that.” All the doctors agree that if she “progresses,” if her leukemia becomes worse with chemo than it will progress with transplant. So we forge ahead with chemo, praying this time it works. Those three rounds of failed attempts last time she relapsed are seared into my mind. I fear nothing will be able to stop this thing. I fear watching the life vanish from her eyes.

We decided with the directing of the doctors to proceed with a chemo regimen called DMEC which is a wild combination of Decitabine, Mitoxantrone (also known as Blue Thunder), Etoposide and Cytarabine. She has actually had all of these chemos before but at different times and in different combinations. On Thursday or Friday she will have her third Hickman catheter installed and then she will be given 7 days of Decitabine, which can be done at the outpatient Hem/Onc clinic. She will be then admitted to the inpatient unit and be given infusions of the other three chemos. These are power house chemos which also are known to have the high potential to weaken the heart. Allistaire has had weakening and dilation of her heart before resulting from chemo and has been on Enalapril for about a year and half to help it recover. Thankfully, it is currently in really good condition, but this is the organ we most pray will be spared. A weak or damaged heart or other organs may close the door to transplant. This combination of chemos is currently under study but has shown such promising results that the doctors here are willing to try it on Allistaire despite it not being a standard protocol. Somehow the Decitabine changes the leukemia cells in a way that “primes” them to be more vulnerable to the destructive powers of the other chemos. Once she is admitted for the remaining three chemos, it will be a standard 28 day cycle where her blood counts drop, with her ANC (Absolute Neutrophil Count) falling to zero, and then waiting for them to recover. Once her ANC reaches 200 again, another Bone Marrow Aspirate and probably PET/CT will be conducted to determine the effectiveness of treatment.

Because Allistaire has extramedullary disease (leukemia outside of the marrow), it is necessary to give her systemic chemo prior to a transplant, even though the percentage within her marrow is currently so low. If the DMEC round fails, there are still a few other options. The trial in Denver for the DOT1L would still be an option, assuming her marrow is over 10%. They are also conducting a study with the drug Panobinastat her at Children’s that they could try. The other advantage of giving Allistaire chemo before transplant is that it takes a bit of time to find a matched bone marrow donor and arrange the actual donation. This is not a quick turn around like using cord blood would be. However, they will also be looking for a cord blood match and reserving that if it became needed. I don’t have a lot of details on the actual transplant options because we are simply not there yet, though it sounds like we will be meeting with the transplant docs at SCCA relatively soon to review what may be available to her. One of the greatest advantages Allistaire has is that in her clinical trial transplant last June 2013, she did not have TBI (Total Body Irradiation). This is radiation of the entire body and can only be given once in a lifetime given its very detrimental cognitive and growth side effects. Because she hasn’t had it before actually gives her more options. It is possible that if she were able to move forward with a transplant that she could participate in a trial using modified T-cells in a way that differs from the T-cell therapy that children with ALL (Acute Lymphoblastic Leukemia) receive. She is eligible based on her HLA typing but she is under the weight requirement of 30kg. She is only 17.3kg but they are willing to consider whether or not they can modify the trial for her. The weight requirement is due to the amount of blood they need to take for all of the tests. If you want to be inspired by the wonders of current cancer research, check out the Juno Therapeutics website that explains the TCR therapy that may benefit Allistaire. Be sure to check out the mad scientist, Dr. Phil Greenburg, who is leading this research and watch the video that shows the modified T-cells obliterating cancer cells. It’ll make you want to stand up and cheer and maybe weep for the beauty of creation and science, being the study of what our Lord made.

The chimerism test on Allistaire’s marrow, which looks at what percentage of her marrow is her donor (stem cells from transplant) and what percentage is herself (the cancer cells), showed that she is approximately 96% donor and 4% host/her own cancer cells. It’s hard to see this first glimpse of her donor cells losing their ground. But to you, most honored and cherished of women, to you, her donor out there across the globe somewhere in Europe, know this, though your cells may not prevail in my daughter’s flesh, it is because of your incredibly generosity in giving of your own flesh that my child has had life for the past sixteen months. And you have given all who know and love Allistaire precious time with her that would certainly not have been. You have allowed countless memories and joys to pile up. You have given my sweet girl, Solveig, memories of her sister that her younger mind might never have held on to. Thank you. We are forever and ever indebted to you and I pray God may bless you for your sacrificial giving. And if there are any of you out there who have yet to join the Bone Marrow Registry, I implore you to consider offering up yourself to be the source of life for another person desperate for a way through, hopeful for life. It is so easy to register. Just go to Be The Match.org and answer a few questions and they will send a little kit in the mail for you to swab your cheek and get a few cells that will give them preliminary information about your HLA type. While Be The Match is the primary registry in the United States, all of the registries around the world are linked, which means your cells could be a gift to someone on the far reaches of the globe, someone you cannot even imagine but is ever so real.

My life has dwindled down to this constricted place, this place of fight, this place where all energy is funneled into the battle to save a body, because it is the dwelling place of a spirit so dearly loved. As has been true before, there are dark walls looming, surrounding, overwhelming and threatening. The view on our lives as we knew it has been slammed shut. In only a few days Allistaire and I will go back into that physical prison of the hospital where she cannot even leave her room and I must leave the Unit altogether if I do leave her room. Every time I need to have food heated up, I will have to ask the nurse for help. Countless strangers will come and go in our small space. A message on the phone in our Ron Don room asks us to fill out paperwork for Adopt-A-Family if we are going to be here over Christmas. I know we will be and it is like so many pains that you cannot stop before they have torn into your heart, severing. The wounds come but I know I will not be destroyed. I recall to mind the treasures the Lord a long time ago buried in my heart. In the days of those first surrounding walls, I beat my fists in fury against them and cried out to God to help me find a way through or over or under them. I used all of my finite might to war against them. And then my sweet, patient God told me to turn around and fix my eyes on Him, on Christ, the author and perfecter of my faith. He helped me to have eyes to see that He is my dwelling place, He is my Sabbath rest, He is my very way, my very life. He enabled me to see that my boundary lines had indeed fallen in pleasant places and then with slightest of breath He caused those walls to simply tumble down. He blew and the waters of the Red Sea parted and He brought the insurmountable walls in my life crashing down. The Lord has been good to me.

So I choose to stand with those incredible three men of faith. I stand with Shadrach, Meshach and Abednego who knew the Lord could save them from the fire but stood with resolute declaration, that even if He did not, they would not bow down to any other God, because they knew that regardless of the outcome, their God was the one true God. I walk into the fire knowing God can preserve the life of my child, and even if He does not, He is my God and I will never stop worshipping Him. I love you Father. I love you and I am afraid. My heart threatens to fail within me. Hold me up. Take my life. I lay it down before you. I know I will see the goodness of the Lord in the land of the living.

Oct30

Fact Gathering

Posted on October 30, 2014 by Conglomeration of Joy

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Allistiare is entranced watching a Tinkerbell movie on her iPad as we await the time for her surgery. There are happy little woodland scenes painted on plywood – scenes of hills and trees with sweet birds, deer, little rabbits peeking out everywhere – a place to allow your mind to be transported to. Soon however, it will be time for her to go back to the OR and be sedated for the third time this week. Today the Interventional Radiologist will go in and biopsy her right humerus bone, the marrow and a lymph node in that arm pit. The MRI from yesterday revealed a slightly enlarged lymph node (about 1 1/2 cm) and the view of the bone was inconclusive. According to the radiologist, it looks like it could be a leukemic infiltrate where the bone marrow is pushing through the bone – they call it a lesion, or it could be osteomyelitis which is an infection in the bone.

The bone marrow aspirate taken from her arm will be tested by Flow Cytometry for a percentage of leukemia. If it were to be 10% or greater, this test would qualify her for the Denver trial. I am still unclear on what will happen if it is less than that. She is scheduled for a PET/CT scan next Tuesday morning to check for any other locations in her body that might show the leukemia. I suppose there could be more biopsies taken if something showed up with this scan but that hasn’t been discussed at this point. For now we will have to go through surgery and wait for bone marrow results which we would hopefully get by the end of Friday. One of my biggest questions at this point is what we will do if there are no biopsies yielding a percentage high enough to qualify her for the trial. A part of the confusion lies in the fact that the remission required for transplant is defined as having 5% or less disease. At this point, Allistaire has less than 5%. Of course, who knows how fast her leukemia is moving but for now she is known to have 0.9%. I asked for clarification from Dr. Gardner about my understanding that the necessity of being in remission prior to transplant is to remove “bulk” disease. She affirmed this to be true. Transplant is not good at clearing out large quantities of disease, thus the need for the low percentage identified in remission. So, this leads to the question of why we can’t just condition her now and take her to transplant. These are the strange terms of this world: “condition,” which sounds so gentle and nice is actually the brutal chemo and radiation that obliterates the present marrow. They “take” her to transplant where she is “rescued,” by the infusion of the donor bone marrow or stem cells. I do know that Dr. Gardner has reopened the search for a bone marrow donor – whether this ends of being cord blood or a match with an actual person’s marrow, I don’t know. It will all depend on the details of the transplant they can give her. But the process has begun.

For now then, we wake up each day with the shocking realization that this is all really happening. We must simply walk forward through each step and make the most of it along the way. Today Allistaire has surgery and we lie low for the rest of the day while she recovers. Tomorrow she will have an echocardiogram to check her heart. All of Allistaire’s organs have to be functioning well to endure what is ahead. Thankfully, as of last check in June, her heart was doing excellent. Next Tuesday is the PET/CT scan. I’m sure intermixed in there will be a number of phone calls with docs and perhaps new tests scheduled.

It is sort of mind-blowing to think of life one week ago. I could not have anticipated this wild turn of events and yet, this is exactly how it goes in the world of pediatric cancer. This is actually not one bit surprising. When people have asked me countless times if Allistaire is okay, is she doing well, I have never been able to come up with an answer that seems suitable, or at least that is satisfying to both myself and the one asking. Understandably, we all have wanted to and have rejoiced in seeing a little girl who seems to be thriving, who is bursting with life. But for me there is always an underlying edge of “I just don’t know.” I think the term “NED,” or “No Evidence of Disease,” is best. It sort of sums up the reality – the victory and also the humility of knowing cancer can seem gone forever, when it is merely dormant, lying in wait to raise its ugly head again. I think back over the past year. This day, exactly one year ago, Allistaire and I got in the car and drove home after being exiled to Seattle for eight months. As of September 20, 2013, she was considered in remission. Three or four bone marrow tests since then have shown 0% leukemia. But it’s still there. This cancer has never truly left in these three years. So sometime between her spectacular test results in June to that first evidence of arm pain at the beginning of September, somewhere in that small space of three months, her cancer was on the move, rising up.

Tomorrow is Halloween, a day both Solveig and Allistaire were greatly looking forward to. They were both going to be mermaids. I won’t be there to help Solveig dress up and admire her aquatic beauty. I won’t get the joy of seeing two happy tailed girls skipping down the sidewalk of Main St. in anticipation of more delights. When asked, Allistaire says she will be a mermaid princess named Ariel. There are some activities at Ron Don tomorrow afternoon that she can participate in, but oh, oh, how I remember Halloween a year ago. A year ago was a time of tentative hope. As our nurse said in those days, “perhaps this is a fragile remission.” And really, we’ve had more than we might have had, more than we were told we would likely have. In August of 2013 we were told she has a 5% chance or less and probably won’t make it more than 6 months, her only chance for survival is another transplant. And here we are, fourteen months later, hoping now for a second transplant. We’ve had all this wondrous time with her and all the while her body has been healing and growing stronger. In light of this, we have been given so much, so much more than we might have had. And yet, oh how I want more of her. I want a lifetime with her.

In the farthest corner of my mind is tucked, hidden away, this one most frightening thought. It is a thought, that with stupid superstition, I hate to say out loud. I try never to look at it. I want to pretend it has never been shown to me. But there in my periphery it remains. If Allistaire dies, I will be at long last, standing on the other side of that terrible divide. I will have been cast into a thick darkness unlike any I have yet known. But I know that in this darkness are the faces and hearts of others whose lives have forever crossed into the realm where death has become real. They know, in a way that I can only imagine, the finality of death. I have seen it from still so relatively far away, because it seems, until it cuts into the deepest core of your life, it is still intangible in it’s most severe of qualities. Becca dwells there. She awakes each morning with the gut wrenching reminder that Marleigh is gone, gone, never to return to this life. And Nancy, sweet Nancy, she will never again hear her husband’s voice. April has lost her baby girl Ruby and Kate her teenage Ruby. Janet grieves that Sarah will never dance again. Mario, Jaxon, Pantpreet, Zach, Christian – all gone, but their parents remain. I have seen the Lord and known His comfort in the darkness, in splintering sorrow, but no matter how bad it’s been, I still have my girl. God needs some of His people to walk all the way down that road and to cross over that chasm that in that place they may know His comfort, they may cling to His promises, they may declare that they have seen the goodness of the Lord – in that place, the place where you can never again hold your child’s hand or look into their eyes or hear their laughter. With all that is in me I want to flee from such a place. But I know in my core, that submission to God for me, means yielding to His will, no matter the path, even if it leads there. And I pray this, Father, if you at last bring me into that wilderness of overwhelming sorrow, meet me there, allow me to see your face, to hear your voice, hold me up, bind up my gaping wounds, comfort me with your Holy Spirit and bring me peace that is beyond comprehension. Father enable me to be a comfort to those you put in my path across that traverse. By the power of your Spirit, put words in my mouth to build up and be salve, be refreshing and hope. Make my face radiant, may your light overflow to those around me. Lord I call upon your name – be faithful to your promises, uphold the glory of your name. “God is love,” this is what you claim about yourself. Let your love be so clearly and mysteriously known by those who turn their faces to you.

It’s just after 5pm now and we’ve just gotten home from the hospital. It was a very, long day. A forty minute procedure equated to 7 hours in the hospital. We are well acquainted with waiting. I had plenty of time to check emails and texts and Facebook. I am overwhelmed by the outpouring of love sent our way. Thank you to you countless folk who have called out to God on our behalf and have asked others to do the same. Thank you for your compassionate and generous hearts.

Many of you have asked how you can be of help, to let you know what we may need. Because we are still gathering data about where Allistaire’s cancer stands, we don’t know how long we’ll be here in Seattle so I hope to give more specifics on ways to help in the upcoming week. But I do know two things right now, in addition to praying, you can donate your blood. Have you done that? It is something so tangible and critical you can do to help Allistaire and other children and adults in her situation. Her hematocrit has finally started to drop. Today it was 35.2. It is never that low. The decent has begun. Dr. Gardner actually wanted to put in her Hickman line during today’s surgery. I said no way. I can’t handle seeing those things yet. I know she will need them, and probably soon, but oh they are just the most wretched sign of the reality of this all. “Access.” They call lines, “access.” Some how it is nauseating to me. They are wonderful inventions but I don’t want my child to need to be accessed! Dr. Gardner graciously agreed to wait. Anyway, back to the point. Blood. Let them stick a needle in your vein and draw out your life force. If the thought terrifies you, good, let the fear sink into you and walk forward into it. Face it. Allow yourself one tiny ounce of her pain to be your pain. If you live in Montana, you can connect to the United Blood Services website and set up an appointment in your local area. If you are in the greater Seattle area, connect with Puget Sound Blood Center.

There is something else you can do. If pediatric cancer is foreign to you, if it is a world you cannot imagine, watch the movie, “A Fault In Our Stars.” It will give you an easy taste of Allistaire’s world. If you are yet more courageous, watch the documentary, “A Lion in the House.” This documentary follows the lives of about four or five children with cancer and their families. This is a hard movie to watch, but it is an incredible opportunity to see into this uniquely beautiful and terrifying world. If you’re interested in knowing more about what life is like at Seattle Children’s Hospital for kids with cancer, watch the recently televised program, “Conquering Childhood Cancer.” I have chosen countless times to watch movies that many call hard and too sad. I willfully put myself in the position to feel pain, to get a minute taste of the pain in the characters lives, because stories reflect life and life is full of ache. It is so much more than sorrow, but being acquainted with the sorrow helps me to step one step closer to understanding and thus love. I want to love my fellow-man. Thank you for so abundantly loving us!