I don’t know what year it was, only that I was a teenager. My family was on our annual summer camping trip, this time to Jasper National Park in Canada. The views that my eyes took in on that trip are some of my greatest treasures. One night we were camping near the Columbia Icefields. Probably in an attempt to get out of cleaning up after dinner, my brother and I headed out to explore. It did not take long for us to realize that we were on a trail that we could not turn away from, but which did require the accompaniment of our dad. So the three of us set out into the evening air on a steep trail that climbed the back wall of a canyon. When at last we rose up out of the wall of that mountain, we came out onto a vast plateau. I will never forget the spectacular sensation of being utterly dwarfed by the expanse of space surrounding us, the absurd mass of the mountains spreading out around us and the unspeakable beauty. As the sun was going down, the light turned warm pink and yellow and seemed to literally fill and splash out of the rock bowl of the mountain face to our left. Before us, one hundred and eighty degrees of mountain peaks repeated endlessly to the horizon. It seemed almost ridiculous to call what we were looking at, a mountain range, for there was literally nothing but mountains. Mountains consumed the entirety of the view.
I am nearly to the end of the fantastic book, “The Emperor of All Maladies,” and last night read these words: “Gene by gene, and now pathway by pathway, we have an extraordinary glimpse into the biology of cancer. The complete maps of mutations in many tumor types (with their hills, valleys and mountains) will soon be complete, and the core pathways that are mutated fully defined. But as the old proverb runs, there are mountains beyond mountains. Once the mutations have been identified, the mutant genes will need to be assigned functions in cellular physiology. We will need to move through a renewed cycle of knowledge that recapitulates a past cycle – from anatomy to physiology to therapeutics…We will soon know what the mutant genes are. The real challenge is to understand what the mutant genes do.” My view of those endless Canadian Rockies came immediately to mind. Every single mountain I beheld, individually, would require great strength, skill and endurance to scale. But what would it be like to come upon such a landscape and to at last rise to the top of the mountain you had so mightily worked at overcoming, to simply see infinitely more such daunting pillars crowding your view? There is a way in which learning more about cancer has been quite depressing, exhausting and overwhelming. I also read last night about the hypothesis of their being cancer stem cells. “These ‘cancer stem cells’ act as the persistent reservoir of cancer – generating and regenerating cancer infinitely. When chemotherapy kills the bulk of cancer cells, a small remnant population of these stem cells, thought to be intrinsically more resistant to death, regenerate and renew the cancer, thus precipitating the common relapses of cancer after chemotherapy.” What a nauseating thought. How utterly terrifying. How daunting because, man, what are you going to do if the chemo just leaves the most hard-core bad guys behind to reproduce infinitely – then what are you up against? Sometimes as I look out at those endless, cancerous mountain peaks, I feel terror because finding a way to keep Allistaire alive feels impossible, considering how many there may still be to scale. I don’t just want the doctors to know what mutations her cancer cells have. I need them to know that the mutated genes do NOW and to figure out a way to stop or undo those deadly pathways NOW. But then there is also something else at work. Something that makes me smile and laugh out loud. Like a dork, I literally cheer in Starbucks as I read on.
These days, I am constantly learning new words. What usually happens is that something is said in our clinic appointment by the doctor or I am handed a pathology report and there will inevitably be at least one word, if not numerous words, that I have never heard of and cannot even begin to crack. I am forced to turn to my good friend, the google search. I start with one word but often only moments later find it necessary to table the understanding of the original word, that I might explore one of the words used to define or explain it. On and on and on it goes. I might start with one word and end up looking up twenty words just so I have a shot at understanding the first one. The other day Dr. Pollard explained to me in an email that, “The TSLPR staining was done to see if Allistaire would be eligible for a study of a JAK inhibitor- you have to have TSLPR staining (thymic stromal lymphopoietin receptor TSLPR; encoded by gene CRLF2) to even be eligible- she wouldn’t qualify with the small amount of disease she has presently (need >20% to be eligible) but wanted to see if it might be an option for the future.” Uh what? Didn’t quite catch that. So what’s a girl to do? A google search of course. So, what is a JAK inhibitor? Just try it. See what happens. Look it up and try not to read one sentence before you can understand all of the words in that sentence and then you can proceed. It doesn’t take long before your eyes start to glaze over and you realize all you have done is walked up to the face of a mountain and picked up one big rock. People sometimes say to me that I seem to have a good handle on the science regarding Allistaire’s disease. The is the most laughable thing I can imagine. To say I have a good handle on it is like saying that I have a good hold on Allistaire as I grip one hair on her head and she runs full force away from me. So how does facing this infinite expanse of looming mountains do anything but bring me to my knees in quivering fear? Well, it does! I fall down on my knees, in fear of…God. At first it really is just straight-up in my face, black fear that sort of rises and builds and swells around me until I see nothing but choking fear that demands to rip the air right out of my lungs. But you’re on the hunt. You’re on the trail of this crazy terrifying thing that you can’t tear your eyes away from and the further you go, the more overwhelming the details become. Then there is this moment, this turning point, when you have gone so far, suddenly the blackness is outdone by blinding light. Suddenly you smack into the throw your head back and laugh reality, that there IS A GOD! The complexity gets so complex and the detail so unbelievably detailed that you just stop and you know, look at this crazy molecule that has a grip on my child’s throat – but look at it, I mean really, really look at it – it’s magnificent! It is elegant and beautiful and startling and just wild with splendor. Yes, it seems like these chemical bonds and pathways hold power over my beloved’s life, but it is the absolute incredible glory of the molecule that is simply bursting and screaming the glory of God! The molecule is not in control, it is a created thing by God! God controls the molecule. God is the one who formed all the elements and caused them to strive and seek and be on a rampage to get to that perfect state of rest promised by the Octet Rule. Look at them go, how they agonize to obtain those last few desperately needed electrons or they push and shove to be rid of that last pesky electron. Then there are the inert gases who just sit and do nothing because they need nothing – they are at rest, they are complete while all the rest of the world goes round and round searching to gain or be rid of to at last find rest. And I know I have only begun to taste of their beauty and how I long for a lifetime or forty just to devote to understanding chemistry and what moves the whole universe and the guts of my child. This is the part that makes me smile. This is when I find myself laughing out loud. Wow. Look at you Lord! Who are you? I mean, really, who ARE YOU?
I keep bumping up against the same truths. What I need is eyes to see. I need to see! Another night camping on the Oregon Coast, I of course had to go to the bathroom in the middle of the night. So I walked down the dark path to the restroom and then rather than returning to my tent, I was lured down another trail. I took the sandy path that led up the dune and out to the ocean. You see, the campground was somewhat shielded by the ocean by a great berm of evergreens. As I crested the top of that dune, I nearly fell over from a dizzying sensation. I was met suddenly by three immensities that bore down on my tiny finiteness. There was the black expanse of ocean as far to my left and as far to my right as could be and all the way out to the edge of the horizon. The vast body of water was paired with the thundering sound of the waves – seeming power incarnate. And above, oh above was the greatest expanse of all. The night sky consumed all that there was and the absolute infinite number of stars that were so thick you could sense in your core that there was no end to them. I look around me and see adjectives. I see enormous, innumerable, powerful. I look up and out and I look too, down and in and see the computer rendered 3D image of a protein. My eyes follow the minute trail of the kinase. Everywhere I look, I see WHO He really is! I quiver and shake and laugh and dance and shout out, how great, Oh how beyond my comprehension is my GOD!
What is this all about? I wonder at this question all the time. Surely it must primarily be about seeing – seeing what is true – seeing the Lord for who He is. But you know, it’s hard. Sometimes, with my face pressed up against the terrifyingly complex MLL gene rearrangement where Allistaire’s 17th chromosome broke off and fused with her 11th, I want to scream and rage and rampage in fury. Often I want to sit hunched down and weeping. Because often, I can’t see what this is all about. What I can see are pale beautiful blue eyes and plump pink cheeks that I can not bear to live without. Cancer even fills my dreams at times. Sometimes cancer is all that I can see and it is like blood pooling in my eyes. When these times come what gets me back up is the reminder, the admonishment, to see. For my face has been slammed up against the mosaic wall and the black tiles fill my view. But stepping back, I can now see more tiles, more colors. Every now and then I sense that I can see the edge of an outline. Something in my gut tells me I am on to something. There is something more, that if I could just stand back far enough, I might be able to make out a bit of a design. This is chaos theory. Zoomed in everything just roars with static and confusion. But give it enough iterations, give it enough time, give it enough space and behold – patterns, images, designs, intention, beauty. The hard-line evolutionist is willing to allow infinite time for a human, in all its glorious complexity, to come into being, but refuses for time to allow the full revealing of an infinite God. Have you ever walked right up to an impressionist painting? All you see is little incoherent dots of color. Yes, it may be lovely and even worth your time to stand within inches of the canvas, but surely you would be a fool to deprive yourself of the joy of stepping back and taking in the full view – of seeing how all those “random” strokes really were applied with intention, intention to paint a starry night.
From that very first morning when cancer first swallowed Allistaire, I have been consumed by a relentless battle to see. My days are filled with attending to the med sheet and filling syringes, washing syringes, driving to and from doctors appointments, putting food in and being alert to what comes out, to the color of cheeks and texture of skin and how long was her sleep and what is her energy level and don’t kick up the dirt because it has a fungus that could kill you….Four million dollars and 21 months and dozens of doctors and scores of nurses have all been in an all out race to preserve the life of my child. The battle that presses on my face is the battle for her flesh and almost every act of my day is joined in that endeavor – my hand does not relax its grip on the sword. But parallel and simultaneous, is this battle to see not only flesh, but spirit, the invisible. When the road opens up into that fantastic straightaway and you dare to press the accelerator to the floor and you hear the high-pitched whine of the RPMs, you wonder how far can you push it, how long can you keep speeding wild on this trajectory. You hear the instruments gather and swell and the violins are rising and rising in crescendo and you agonize with them as it seems they could not possibly strain to reaching any higher peak. Imagine the accelerator is stuck, the violins don’t cease. The ringing tension won’t let up. This is how life has felt, two absolute furious, wild, grasping, unyielding battles fought side-by-side. There is no moment that you can ease up on either; there is no taking a break, both demand constant attention.
And the truth is I am so desperately weary. No matter how many hours I sleep, I feel exhausted. This past month has been the hardest of all. I had my eyes set on October. I can make it to October. But the flash flood of reality has swept that away and I am left gaping at the desolate land stretching out before me. I have no landmark to aim toward. There is no destination, no choice but to journey on. It matters not how frantic I am to be done with this. I have two faces set before me – that of Allistaire’s and that of my Lord’s, two faces that entreat me to continue on in the fray. I have felt battered, left splintered and rough like wood exposed to the sea winds and storms so long. I asked to speak with Dr. Delaney alone at the end of clinic on Tuesday. I know I am not her patient but she needed to understand that I am too linked to that little girl to be disregarded. I am about to break down in rage or sobs, I told her. I am worn so thin. I feel like a wounded, broken animal about to bite and snarl but who really needs gentleness and binding up. I’m not asking to be deluded with false hope, I just need a little compassion and to hear that she, as our doctor, is still in this fight. Honestly, I got neither from our last doctor. Anyone who is with Allistaire for five minutes knows that girl is not done and I needed to hear some determination, some tenacity that this battle is not over. We walk forward, grim from the battle replete with defeat, but steely eyed and pressing onward. Thankfully, Dr. Delaney is a spirited, cheery, smarty-pants doctor who conveyed great support to me and seems a trusty worthy ally. What a gift, what refreshing in this parched land.
What lies ahead, I do not know. This road has felt so daunting and long, but I am dismayed to see cancer still entrenched. I am dismayed to see my own heart still so entrenched in its sinful, earthly ways. Lord, surely you have ravaged me enough, surely you have ripped and dug out enough of my flesh. But no. You know what, as much as I have yielded, and as much as I yearn to yield fully, my independent sinful self is reluctant to be done away with. I rage and scream because I still want to be the one who decides this outcome. I still see with such finite eyes. I still savor the sweet taste of the life I imagine for myself and so often I want to spit out this life the Lord has handed me. This battle to see is unceasing. Every thought I truly must take captive to the Lord. I am terrified of what must still be to purge me of this earthly, temporal view. And with weakness of voice, I say, Father, oh Father, remember that I am but flesh, I am but dust. Forgive me and deal gently with me. And there His words meet me, a bruised reed He will not break, a smoldering wick, He will not snuff out.
Allistaire and I are two broken girls. On the surface, it may be hard to see the death dwelling within, but it is there and it constantly threatens to swallow up life. We battle on. Our weapons are chemo and the words of the Lord. Our hope is for life abundant. The quiet peace that enters is the truth that God presides over both wars and in the end He will win. In the end, life will be the final reality. As I rubbed Allistaire’s back the other night, I whispered to her, “Allistaire, do you know that in heaven there is a river that flows from the temple where Christ dwells, and beside this river are trees with leaves that heal sickness? Do you know sweet girl, that one day there will be no more sickness and we won’t die again and there will be no more sadness?” And that little girl was so abruptly alert and strained to form words to confirm what she had just heard. “No more sickness in my blood? No more sadness? We can’t die anymore?” No love, no more death. No more sickness. No more sadness. We both lay then in silence and hot tears ran down my face as I yearn for that day. Oh how I long to be done with this battle, how I long to lay down the sword, for the sickness of my sin and my beloved’s cancer, to be forever, ever and ever done away with. But here we dwell in this already and not yet, this time between times.
As for Allistaire’s adorable body, she is also between times. The first round of chemo is finishing up and next Friday, September 20th, she will have a bone marrow test to determine the impact of the chemo. Her ANC did drop a fair amount but seems to have steadied, hitting 1,800 at the end of this past week. Her platelets dropped some but have actually risen again and her hematocrit has been a rock solid 38. We are thankful she has not needed any transfusions. Her GVHD continues to be controlled and only shows up as a roving rash on her skin that has never gotten very bad. Her liver function tests rose a bit over the norm but this was to be expected as her body processed the chemo and they have trended back in the right direction this last week. My one concern is that she has complained quite a few times about pain in her legs, though this hasn’t seemed to really slow her down. She has been full of joy and energy and enjoying lots of folks stopping by who she can convince to play hide and seek with her. All in all, she is doing great. This past week has been crazy busy with additional responsibilities. Tuesday we had clinic and later in the afternoon had the joy of being present at a ceremony in which one of our beloved doctors, Dr. Ann Dahlberg, was awarded a $250,000 grant by the Hyundai Hope on Wheels Foundation which awarded a total of 10 million dollars to 41 different institutions this month of September, as it is Childhood Cancer Awareness Month. Since the foundation’s inception, it has awarded over 65 million dollars toward the furthering of pediatric cancer research. So amazing! Allistaire also had her eyes and teeth checked out to determine any current indicators of damage from all the chemo and GVHD. Thankfully, both looked great. She had a chest x-ray and will also be getting a CT scan with contrast, both of which are to see how things look with her cancer and the nodes on her lungs. All of this testing is done around Day 80 post transplant. Typically, all this assessment would determine the overall state of things and result in the child either going home or potentially transitioning back to care through Seattle Children’s. Clearly, this is not the reality with Allistaire, but they still do all the testing to provide benchmarks of how she is doing. On Saturday, September 21st, she will start her second round of chemo.
As the battle rages on, I choose and delight to sing Psalm 103:
1 Praise the Lord, my soul;
all my inmost being, praise his holy name.
2 Praise the Lord, my soul,
and forget not all his benefits—
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.
6 The Lord works righteousness
and justice for all the oppressed.
7 He made known his ways to Moses,
his deeds to the people of Israel:
8 The Lord is compassionate and gracious,
slow to anger, abounding in love.
9 He will not always accuse,
nor will he harbor his anger forever;
10 he does not treat us as our sins deserve
or repay us according to our iniquities.
11 For as high as the heavens are above the earth,
so great is his love for those who fear him;
12 as far as the east is from the west,
so far has he removed our transgressions from us.
13 As a father has compassion on his children,
so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
he remembers that we are dust.
15 The life of mortals is like grass,
they flourish like a flower of the field;
16 the wind blows over it and it is gone,
and its place remembers it no more.
17 But from everlasting to everlasting
the Lord’s love is with those who fear him,
and his righteousness with their children’s children—
18 with those who keep his covenant
and remember to obey his precepts.
19 The Lord has established his throne in heaven,
and his kingdom rules over all.
20 Praise the Lord, you his angels,
you mighty ones who do his bidding,
who obey his word.
21 Praise the Lord, all his heavenly hosts,
you his servants who do his will.
22 Praise the Lord, all his works
everywhere in his dominion.
Jai, I realize words are never enough and it is impossible for me to understand this path you are on with sweet Allistaire, but I am ever so encouraged by your real words faith and the humanness with which we live. My prayers continue to be with you dear sister. And, you are right, the pictures show it…Allistaire is not done! You continue to fight this fight with sheer determination, as you are surely leaving the precious footprints of the most amazing fight with you and your princess. Much love to you. Terry
Thank you for sharing your terrible, wonderful journey! You are a mighty warrior despite feeling worn & weary. Know that we continue to pray for you, Allistaire, your whole family & medical team. May God give you strength for each step you must take.
What an amazing Psalm to accompany your heart-wrenching, beautiful prose. Your journey connects the imperceptible mysteries of science to the infinite mercies of our Heavenly Lord and brings earthly reality to its knees in the face of the awesome everlasting loving power of our Lord. I am astonished at the depth of your perception and your ability to draw such visual comparisons between what you have experienced in this life and what your convictions tell you of the glorious life to come. It’s daunting to comprehend the journey you’ve been on – no one can understand unless they have lived through experiences like you. Although you are road-weary, the Lord will always hold you up and sustain you through another day. God bless you! My prayers go with you always!
I’ve been thinking of you often, every single day. Praying that the chemo is working and that the next steps will become clear, that the path towards remission and relief and togetherness remains open. You all are being lifted up. Love to you.
The battle is not over! We are praying for you!
Dear friend and sister thank you so much for taking the time to write down not just the journey but the real feelings and emotions. You are being such a wonderful encouragement to many you may never even hear from. Your love for Him in the midst of the difficulty of the journey has been such a magnetic example for me. Betty and I join in prayer on the phone every night for you and sweet Allistaire and your family and now we will add the medical staff too. Oh, I thought I saw Allistaire on T.V. a couple of times in a commercial for cancer research for children. Do you know if it was her? Love you, Jai, and send you big hugs, gayle