It’s confirmed. The pathologist here at Seattle Children’s reviewed the slides and tissues samples from the biopsy of Allistaire’s lump that we transported ourselves from Bozeman. They call it a Leukemic Infiltrate and what it basically is, is bone marrow stem cells in the skin of Allistaire’s back – not really the place that bone marrow cells are supposed to be. “Relapse,” such an ugly word. “Refractory disease,” is another term. Whatever you want to call it, it is an utter sinking of the heart. It is grieving for a thousand things – for beautiful hair that is finally long enough for Allistaire to unconsciously twist around her fingers, for ovaries that will never be the bearers of new life, for the scars upon scars on our beloved’s flesh, for a heart and kidneys and lungs and liver potentially damaged by poison, for a brain that is simply bursting forth with growth and development which will be attacked by the same chemo meant to kill the fast-growing cells that threaten to extinguish her life, for no hope of preschool or swim lessons or camping this year, for a distance of 700 miles between two giggling sisters and husband and wife…
There is grieving and sorrow and loss and ache and pain that no words can pin down. But…that is not all that there is. As I walked down the path to our hotel room this evening, it was truly evening – a Washington evening, in the spring. For it is spring here – crocuses are out and little green buds on the trees and birds – oh birds singing their sweet evening songs and light that your very flesh detects as new and fresh. I spoke with a friend this morning and she, in her very encouraging way, reminded me of something. She spoke to me of how Solveig and Allistaire would be different people as a result of all this. As she spoke, her words raised images in my mind of two beautiful, strong, deeply compassionate, amazing women. It is hard not to only see the potential negative effects of separation and necessary focus on one sibling over the other. I wonder how I will be able to discipline and teach Allistaire when I must sort through bad attitudes and physical pain and effects of steroids and other drugs. It is hard not to only see loss and brokenness and threat of death. But I recall in vivid detail a Sunday morning in December 2011. It was the first morning of waking up in our house without Allistaire there. The green light of her baby monitor glowed in the night but she was gone – locked away in the hospital, and who knew, I did not know if she would ever return. But that morning, the Lord God lifted my eyes and He spoke so clearly to me. “Be expectant,” He told me. “Do not fix your eyes behind you on all that you fear is lost, but look up, look out, be on the alert. I AM at work. I AM on the move. I will accomplish my glorious, beautiful will that you cannot even being to conceive of.” From that day, the living God of the Universe, so clearly spoke to me and told me – this is not an alternate path. This is not a mistake. You are not on a detour from the good life you should have. This, this path, this life IS the life, the path that I have for you. God wastes no pain. Whatever the costs of these days, will be far exceeded by the glory and beauty and wonder of what God is at work creating – this creator God who never ceases to bring life out of death, good and of evil and light out of darkness.
So I am on the look out – eyes roaming and heart seeking to behold what God is up to. At the same time I must crouch low and be on the alert for all that seeks to devour my beloved. God has given me too, this role to advocate for the life of my child, to know her utterly and speak on her behalf. This has always been my responsiblity as her mother, but in these days there is much more on my plate. I must have ears to hear what is being said, to know what questions to ask of the doctors and nurses, to be attentive to Allistaire, to scan her flesh for signs of anything awry and watch her demeanor for indications of issues that her words will never tell me. I am the one that must sign the consent forms to stick needles in her back, to take flesh from her, to allow experimental drugs to drip into her veins, to help nurses wrestle her when she defies getting her blood pressure taken, I am the one to walk the halls with her – IV pole in tow and to make sure she doesn’t rip out her lines in her zeal to ride the little bikes on the Unit.
So here’s the plan in brief – I’ll get to the details on another day. Basically the plan is this: get the sister into remission, napalm her own bone marrow and then give her someone else’s that will set up shop in her body and have just the right balance of attacking any remaining cancer cells but not fighting her own flesh too much. Okay, so maybe just a wee bit more detail. Dr. Pollard has recommended a particular chemo regiment that they have had good results with for kids who have relapsed with AML. We will also be enrolling her in a clinical study that will help her body recover her blood counts faster and thus help give her better protection against infection from evil doing bacteria and viruses. So the goal is to get her into remission with this one 5-day round of chemo. Like before, she will have to remain in the hospital while her blood counts drop and then rise again. They will then do another bone marrow test sometime after her ANC (Absolute Neutrophil Count) gets to 200. This typically ends up being between day 28 through day 35 (day one being the first day 0f chemo). In order to be considered in remission, Allistaire will need to have a cancer cell level of less than .1%. Back in the day, remission was considered 5% cancer cells or less and now, with the amazing aid of Flow Cytometry, the level has gotten down to .1%. Leukemic cancer cells are bone marrow stem cells that never become healthy, functioning blood cells but begin replicating at greater frequency and will have proteins on their surface that also can create all sorts of yucky junk – in Allistaire’s case, her cancer cells created fibrosis which looks like a dark web-like structure in her marrow. If this is all new to you, consider checking out the, “Getting acquainted with AML” post that you can click on, on the upper left box of the page. Also, I think there are some details I have forgotten myself and need clarification on, so don’t be surprised to find changes to this post once I talk to Dr. Pollard again.
So, assuming Allistaire can get into remission with just one round of chemo, we still have an enormous hurdle – finding a bone marrow donor who can be ready to donate in time for Allistaire to begin the transplant process after this one round. When we first began this process, the doctors said to us, “Oh, she’s white on white, we shouldn’t have any problem finding a donor for her.” I assume this to mean, that because her ethnicity is so utterly northern european and Scandinavian, there is an ample donor pool available to her. In contrast, those whose ethnicity is from a part of the world with fewer donors, will have potentially fewer match options. What this should tell you is, hey, if you’re not white, you have an extra responsibility and opportunity to sign up to be a bone marrow donor, to be a match for people like Allistaire’s little friend, Jenna, who is from Guatemala and had a transplant last spring, or the little girl in the room just down the hall from us who was Indian and needed a transplant because of an auto-immune disease. More about bone marrow donation in another post sometime very soon. The point is, please pray that God would provide a perfect matched donor in time for her to begin the transplant process right after the end of her first round of chemo. If a donor is not yet ready, Allistaire would be forced to go through another round of chemo, even if she is already in remission. This would simply mean more damage to her organs and more time to be open and vulnerable to infection. Fortunately, Allistaire has already had the HLA blood typing required to determine everything we need to know about her to matched with someone else’s stem cells. All four of us in our family were tested the first time around and neither Sten or I, nor Solveig were matches. Time is of essence. Dr. Pollard called Fred Hutchinson to alert them of our need for a donor even before we met with her. They told her it would be extremely tight, and maybe impossible, to make it happen in the time frame she is hoping for. My estimate is that we have 5-6 weeks before Allistaire could potentially and optimally being ready to move forward with a transplant. I personally have already been contacted by SCCA (Seattle Cancer Care Alliance) and given the names and contact info of our Search Coordinator. It is game on and we are scoping the world, literally, for a match for our sweet little love.
So far I’ve really only relayed to you what one, one-hour meeting with Dr. Pollard entailed, and that even leaving out tremendous detail. The rest of Friday included lab draws at 10 am in which Allistaire of course fought getting her blood drawn. Then she fought having an EKG and fought having an echocardiogram. She then intensely fought being weighed by throwing a complete fit on the scale and absolutely refusing to put her feet flat on the ground to have her height measured. She screamed like a mad woman while getting her blood pressure taken which yielded a most inaccurate reading. She refused to let Dr. Pollard look at her back where the biopsy was taken or feel her stomach to see if her spleen and/or liver were enlarged. Dr. Pollard had to go in while Allistaire was under anesthesia for her bone marrow biopsy to complete her exam. Allistaire fought and cried and screamed when the put the mask up to her face to put her out before inserting the IV for her procedure. Once Allistaire is inpatient, she will have vitals done at least every four hours. There are countless occasions where she will have to do what she doesn’t want to do and what likely scares her. I pray that she will quickly grow accustomed to the routine and that she can direct that angst and fight against that which is harming her and not those who are trying to care for her.
Karen, the nurse practitioner, who did the bone marrow biopsy, said that she removed from Allistaire, more sample than any other child in a year. A 2-inch cylinder of bone the diameter of pencil lead was removed for the biopsy. Then, the bone marrow aspirate removed 14 ml of fluid and spicules from Allistaire’s bone marrow. The aspirate will be sent to several different places for a wide number of tests to be done including flow cytometry, morphology, multiple cytogenetic tests and to the folks conducting the clinical trials in which she is enrolled. In the past, it was very difficult to get good samples from Allistaire’s bone marrow due to the fibrosis created by the cancer cells. While the nurse practitioner could detect fibrosis by the feel of things, she felt confident she was able to get good samples. If this is the case, Allistaire will not have to be subjected to this pain again for at least four weeks. Even so the gigantic needle went into her back seven separate times and an eighth time into her spinal column in order to determine if the cancer is in her spinal fluid.
Because Allistaire’s blood counts were still actually pretty decent (hematocrit 37.5, Platelets 244 and ANC of about 1400), we were able to wait until this Monday to have her admitted. At 8:30am on Monday, she will go into surgery to have her double-lumen Hickman catheter put back into her chest. The Hickman catheter is placed into a main artery so that when chemo is put into her line, it is quickly dispersed through her body. The other line is used for daily blood draws to determine her CBC (complete blood count). Monday afternoon she will be officially admitted to the SCCA Unit. The SCCA or Seattle Cancer Care Alliance is a collaboration between Seattle Children’s Hospital, The University of Washington and Fred Hutchinson Cancer Research. We are privileged to receive care in such an incredible place. Never-the-less, it is a small space with a pair of double-doors beyond which Allistaire will not be able to leave for at least a month. She will be confined to this unit on the hospital in order to best protect her from illness. That afternoon, the researchers in charge of the clinical study we are likely to enroll Allistaire in, will meet with us to discuss the risks and benefits. She will also need to be sedated for a cat scan to determine if there is solid cancer anywhere else in her body. She will be sedated separately for an MRI of her back so that we can have a base line for where the cancer has been in her skin. Lastly, she will be sedated for yet another lumbar puncture in order to insert chemo directly into her spinal column regardless if they detect cancer there or not – they do this as a precaution. We are looking at beginning chemo on Tuesday or Wednesday.
Wow, I’m tired just from writing this all down. There is a lot to take in all at once but I have to tell you, that I am thankful to have a much better idea of what is happening than the first time when just the sight of a bald head and an IV pole with pumps terrified me. It is strange how ordinary so much of this feels to me. It is an odd comfort. And yet, this very process of familiarity has also provided awareness of what is coming, both the expected and the possible – both scary, both hard to know is about to happen to your little girl.
Sten and I have been given 48 hours of “normal” life with Allistaire before she will be admitted. It is hard on both of us, but particularly Sten who will have to fly home in several days. For Sten, his heart is heavy knowing that these could literally be the last days he may ever spend with Allistaire doing normal things outside of a hospital. Yes, we feel melodramatic thinking and articulating such thoughts, but you know what, that’s how I felt thinking about last weekend possibly being my last weekend at home in many, many months, and it has come to pass. This is the world we live in. This is the world where a healthy 14-year-old boy named Alistair from Canada can be diagnosed with Acute Lymphoid Leukemia, do great with his chemo and in less than three weeks in the hospital, die of a flesh-eating disease after several radical surgeries trying to stop it. We have absolutely no clue what our immune systems are doing for us all the time. We have no idea how vulnerable we are when we are defenseless. Allistaire could die of a diaper rash, and that is not a joke. She may simply fly through everything with impressive ease as she did last time – that is what we hope for, but we cannot disregard the might of the enemy inside Allistaire.
As for me, I will not try to minimize these harsh realities, but I choose to hold them alongside the God who created stem cells and bacteria and DNA and all the complexities we come to know as we travel this road. I have to tell you, I get wild with joy as Dr. Pollard tells me about stem cells and I have learned about flow cytometry and I read about how “The underlying molecular basis responsible for the migration of leukemic cells to the skin is not defined. Homing to specific tissues is controlled by the combined expression of different chemokine receptors and specific adhesion molecule receptors. For example, homing to the skin of memory T cells is regulated by coexpression of cuta- neous lymphocyte antigen (CLA) with specific chemokine receptors.70 CLA on the T cells interacts with E-selectin on the dermal postcapillary venules and initiates rolling and teth- ering of T cells on the endothelial cells. Chemokine binding to T-cell receptors activates lymphocyte function–associated antigen-1 (LFA-1), which will then interact with the intercel- lular adhesion molecule (ICAM)-1 on endothelial cells. The interaction with integrins and endothelial-bound chemokines could then lead to the arrest of the T cells and transmigration into the dermis. One study showed that most CLA-express- ing T cells are CC chemokine receptor 4 (CCR4)+.71 The CCR4 ligand TARC (thymus and activation regulated chemokine, or CCL17) is capable of inducing integrin- dependent adhesion of CLA+ T cells to ICAM-1 in vitro.72 Therefore, homing of T cells into skin is thought to be medi- ated via the sequential interactions of CLA with E-selectin, CCR4 with TARC/CCL17, and LFA-1 with ICAM-1.7.”
Did you catch the last part? Neither did I! It’s craziness – it’s amazing – it’s wild how it all works together. And part of me literally quakes with fear when I realize the insane complexity of what we’re up against. Then I remember, oh yeah, that’s right, my God made all that. He not only understands it, He is in control of it. I mean, He’s the one that literally holds electrons spinning around the nucleus of an atom together. I know God can heal Allistaire. It is not hard for Him. I am asking relentlessly that He would but even more so, I am asking that His good and perfect Will, will be done and that He would be shown magnificent and radiant and mind-blowingly beautiful through all of this.
Jai, I am holding you all close right now. My heart broke at the news. As always though, your faith is inspiring, and your words even in the midst of your own tremendous grief are somehow comforting.
“Faith looks up”
We have walked a similar path so please do not hesitate to contact me: call, text (do you still have my #?) or email – firstname.lastname@example.org – whatever, whenever. I am here.
I pray for all that you do and hope that all decisions made lead towards Allistaire’s cure. May the search for a donor be quick.
Olivia had a pair of Peach’s Neet Feet (https://peachsneetfeet.com/) made for her while she was in the hospital recovering from transplant. I’d like to sponsor a pair for Allistaire if that would be okay with you. Some magic shoes to cruise the halls in as she gets to the business of kicking cancer to the curb for good. Let me know.
Sending love and blessings from across the miles.
Praying, praying, praying. God is shining through you, and I’m thanking Him for the mighty work He is working in your entire family.
As I read this, all I can think is what an incredible mother you are. We may forever wonder why we have been chosen for such roles, but Allistaire has THE best mom looking out for her. I feel love and joy when I think of all of you, despite knowing the harsh road ahead. We have to take it all in God’s timing, but I will pray that the best match for Allistaire’s cancer-free future is found. Enjoy today, friend. May some sun shines on your sweet faces.
Oh Jai, we are completely heart broken for you all. I sit in silence after reading your posts and try and comprehend your depth of faith. As a mother, I stand behind you, praying, aching and trusting in His plan for all of us. Please post how we can find out if we are donors. We will do it as soon as we can. I am not sure if we can just get tested and they will find you if we match. I’ll do some research. Love to you all.
Praying for your family. People dont truly realize what the simplest of germs can do to an immune comprised child. We are at the end of our AML journey (hopefully)
Jai, I am praying for all of you! I am praying that God will heal Allistaire completely and give you strength and comfort during this time. Thank you for all the updates.
There are no words, really. Just prayers, and thoughts, and hugs, and love to you all. Thank you for walking through this with such courage, faith, and authenticity. We stand with you in prayer, sweet Jai.
I am shaken by the gravity of your words Jai…not only by the depths of your pain and grief but also by the tight grip you have on the Lord’s hand as you walk this unfathomable path. I so don’t understand why you are enduring but I agree with you – our God will be with you every step of the way.
Oops…I meant to write, “I so don’t understand why you have to endure this kind of pain but I agree with you – our God will be with you…”
Dear Jai and Sten,
Big hugs from the ladies of BSF room 306. Not only was Allistaire taken away but you were swept away from us also, Jai. I have passed the word of Allistaire’s relapse all around BSF in Bozeman as I am sure your mom is doing in Bellingham. No we do not know why we have to go through things but only that we live in a fallen world and we and those we love are all vulnerable. But God is with you in all those dark places, will not waste your pain and will bring good from it.
I ache for you and your baby girl’s ordeal, however, and concur that if there is any chance you need more bone marrow registered I would be happy to set up a drive in white white Bozeman. I am already in the national registry, I think, or at least I was ten years ago. Your write beautifully. Keep us posted. xxooRobin
Jai- Jason and I are in Mexico right now having a babymoon before our next little girl arrives. I am broken for you. Hurting for you but trusting in our amazing father. I will be there for you. I will come down when I can before the baby is born even though its a few hour drive for you. I want to give you a giant hug and pray and just be with you. Know we are praying our guts out here friend-Rhonda and Jason Holtrop
I love your heart, and I tremble at the goodness of our God, even as I weep with the reality you are facing. You’re right: God never wastes our pain. May He surround and protect you and your girls and your husband as you move heaven and earth to heal sweet A. Reese and I spoke of you to our other sister, as we watched 8 of our 9 kids play in the pool (the 9th was just home with Dad). We’re all three praying for you. Praying for healing. Praying for strength. I love you, Jai. You have what it takes.
Hello dear Jai, I haven’t had the pleasure of meeting you yet, however after reading your descriptive writing regarding Allistaire’s challenges, I know you and I know your heart. Bethel Halladay, God’s messenger and friend from CBS in Bozeman has shared this bridge with me, because my family is entering a similar walk. We have no idea why God chooses us to wrestle and cope with illness. Only that HE rules and knows what HE’s doing. It says in our our Bible, our GPS that he doesn’t waste our pain. My heart breaks to see your precious darling go through this, when in my mind, I can see her running in the grass chasing a butterfly. That day will come again with God’s Grace and right now, you are our strong link to His work. I find comfort and peace in my knitting. Studies out there show how handwork relieves tension as you continue to be productive and creative during long hours of waiting and wondering. When your mind refuses to focus on reading…knit. Sending love from Bozeman….Kristina Urband
Just wanted you to know that the ladies of the Bozeman, Mt Community Bible Study are praying for all of you. We are sending our prayers and our love.
I had the pleasure of meeting you and Allistaire at the Nutcracker in Bozeman back in December. I have thought of and prayed for your family since then and want you to know that your strength and faith were obvious to me, even before I learned of your terribly difficult road. You are such a beautiful, sweet and intelligent mom who is doing an amazing work in the life of your precious little girl. Love and prayers for you and your family- I hope we meet again.