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.
Thank you for the post. I am Joe and Jen’s neighbor in Valley West. Our kiddos also attend Petra and I met you once at Clod Smoke. I will be praying! Let me know if you would like me to set up the Take Them A Meal website again. I would love to help anyway possible and I will start with prayer.
Continuing to hold you all up in prayer. Thank you for your 200th post, Jai. You encourage all of us as we read your blog and watch you navigate this very, very difficult path. I am asking the Lord to provide all that you need, moment by moment. Sending love from Bozeman, Nancy MacPherson
Allistaire – we will pray endlessly for you! Lord God please work through these doctors to spare this child whose already endured far more than most are asked to.
Jai/Sten – we both know there’s nothing I can say to make you feel any better. Simply know we’re here for you in prayer and think of you all continually. You continue to be an absolute inspiration and pillar of selfless strength to others!
Sending you all the love and strength in my heart.
Dawna Lynn Wells
(Caden Shrauger’s cousin).
We all love you Jai! We’re praying like crazy here.
All these verses that comfort me still, yet they hurt in the context of your sweet daughter’s life and suffering. The promises hold true, yet you still walk through the valley. I love you, Jai. Continuing to cry out on your behalves before our Father.
i pray for a tsunami of grace over your family right now.
I have been praying for you guys ever since I first saw your blog on a friend’s Facebook page. My heart breaks with you but I’m praying for God to give you strength and peace as you walk down this road. Thankfully He walks right beside you! I just signed up to be a marrow donor..thank you for making me aware of a way I can contribute! Xoxo
Dear Jai & Sten,
I don’t communicate much via computer(it’s a generational thing!), but I want you to know that Neal and I have read all 200 blogs, and I’ve talked with JoMarie. We want you to know that we hold you and yours up to the Father daily, and our hearts break for you. We are praying for a miracle! Also for God’s wonderful grace to help you through this. Our families have been friends for many years, and we love you! Niki & Neal Reavely
Missing Allistaire’s sweet presence in class! Praying for healing.
Jai, you all are on my heart and in my thoughts so often throughout the day. I wish I could just give you a big hug. I am relieved to hear that there are several treatment options available. I will be praying for a quick remission and a perfect match. Hugs and love and prayers from Texas.
love you, dear Jai and Sten and your precious family too. I, like so many others, am holding you up before our blessed God! Praying for just the right path for the doctors to follow with you. I remember so clearly rejoicing with Betty that Allistaire was in that 5% who hit remission, and we are trusting, Him for yet another miracle, another perfect match! The statement of faith from the 3 Hebrew young men rings in my heart too…with God nothing is impossible and I rejoice in that and still cling to Him for the “whatever” future. love you guys.
Thank you for the update Jai! Praying for you precious family.
Jai and Sten, beautiful girls Solveig and Allistaire,
The pain of your journey is overwhelming. My eyes sting from the tears that flow from dire medical facts juxtaposed with all the life and beauty in the photographs you post. It’s just so incongruous. It is like reading the Psalms, the ones like Psalm 13. Underneath all of the fear, the agony, the crying out is the steady, constant love of our Father. He has faithfully held you close. My heart’s cry and my prayer for you is first of all for the miracle. He can do anything. Lord, would you delight to show your mercy and favor on this precious little girl by giving her many happy, healthy years with her loved ones, here? Oh Lord, we ask for it in utter confidence, knowing that if it is your perfect will, it will be done! And Abba, with the same confidence we know that you have not allowed this beastly cancer and the dashed hopes and all the suffering in vain. We know your purposes are good and perfect and if you do not choose to extend your hand in miraculous physical healing, Father it’s because you have something better in mind. We cannot possibly understand it, because death is ugly and it is not your design,and you hate it so much your bore it on the cross to ultimately put an end to it. Surround Allistaire and her family with your peace, knowing that we are not our own, but belong, body and soul, to our faithful Saviour, Jesus Christ. Remind them again that you are the Grand Weaver, that you are orchestrating all the events of their lives, the good that you have ordained and the bad that you have allowed, for your glory and for the good of all your people, especially sweet Allistaire. Wrap your arms around them today, whisper to them as Jai posted last year, “it will be okay because You will be there with me.” Thank you Father.
With love and tears from a fellow Gallatin-valley girl and mommy and struggler against the cancer beast,
P.s. Thank you for posting the link for Be the Match. I’m signing up after signing off here.
Dear Jai and Sten, It has been so nice to see Allistaire’s sweet smile and bouncy mop of hair in your pictures. And oh how our hearts ache to read about this latest development. We are sending our prayers that your great medical team will hold hands with God to beat this terrible disease. Sending all our love and strength from the Netherlands. You are constantly in our thoughts.
Oh, Jai, I just love you and Allistaire! Since I came to work that Monday after you’d been in with the arm pain on Friday, I have been holding you up in prayer. Much as Allistaire hates my “pokeys,” I want to be the one poking her because it means she’s still in remission; still here in Bozeman. Solveig is so sweet at Bible Study with grandma. I love your family and will be asking the Lord to do a miracle; to heal your precious little one. Praying for you all daily.