I started this blog the night after our younger daughter, Allistaire (21 months at the time), was diagnosed with AML (Acute Myeloid Leukemia) on December 10th, 2011. She is little sister to our only other child, Solveig (pronounced Sole-vay) who turned 6 years old in August. At the time we were living in Kent, Washington – a suburb of Seattle. The night before I took Allistaire to the doctor and first heard the word, “Leukemia,” in connection to my wee beloved child, my husband had a long sought after job offer with a great company in Bozeman, Montana, his home town. He had to turn the job down but said that if they could hold the job for the next 6 months, he might be able to take it. On the night before getting results from Allistaire’s first bone marrow test since beginning her treatment, we received word that the company really wanted to find a way to make it work for us and they would hold the position for Sten assuming he could start by April 15, 2012. The next day we got the news that we had so hoped for – they found 0% cancer cells in Allistaire’s bone marrow using the awesome Flow Cytometry test. Allistaire was in full remission. Bone marrow test after bone marrow test concluded the same thing. On April 13th, Sten and Solveig moved to Bozeman, Montana while Allistaire and I stayed in Seattle for the remainder of her treatment. On May 15, 2012 Allistaire had her Hickman Catheter removed from her chest and she and I got in the car to head to Bozeman. On June 30th we officially moved our life and home from Washington to Montana – the answer to years and years of prayer.
How can I sum up here in this brief space what has transpired? And who really are we? This has been a path I never wanted to know anything about, but I have walked a road where God, creator of the universe, Savior of my soul, has met me over and over and over. I have known peace that utterly surpassed understanding.
Allistaire is sitting by my side this very moment – with her big blue eyes – her eye lashes, long and lush have returned and though her hair is no longer curly it seems, it is over two inches long at this point. The doctors told me that people find the transition out of the hospital at the end of treatment is always far harder than they could guess. This has been certainly true for me. I find that I now have details of sickness and death that were previously generic. I can now imagine in vivid detail what it could be like for Allistaire’s cancer to come back. The reality too is that every day with Allistaire has only resulted in me loving her more and more – the delight’s she brings to our family – they just continue to bind our hearts to her. When you are in the hospital day after day caring for the precious flesh and spirit of your child, you come to think that somehow someone so amazing and someone you love so deeply, cannot possibly die. It is not long before the names of those who passed away become so numerous that you have to try to remember their names. I am not saying all this to be depressing or morose – it is just the I have very recently come to realize that fear has had such a grip on me and I must daily fight the battle of submitting my heart and all the days of my life to God my Father.
These past four months since we have returned to “normal” life have been some of the hardest days ever. Everyone always says to me, “she’s okay, right?” And she seems like she’s doing well but every day could be the day that her cancer comes back. I have seen too much to think that we have any certainty that this is over. I pray that it is, but more than that, more than anything, I pray and my whole being swells with this prayer – that I would walk resting in Christ – the author and perfecter of my faith. Cancer is not just about flesh, it is even more so about spirit. I will fight to not allow my eyes to remain downcast on the gritty details of cancer cells and blood counts – there is ever so much more to this road that the Lord has us on. He is up to something. He has not taken away life – He has expanded and pushed out the limits of our life. I am expectant. I want to be more on the look out for what God is doing and where He is extending grace than for pink cheeks, and appetite and energy that give me comfort that Allistaire is well. God means this for our good and not just our’s but for so many more lives than just our own. He is able. He will accomplish it and I, I get to glimpse the edges, the faintest outlines of what He is creating through this. God is my light and my salvation – the stronghold of my life.
* I wrote the above sometime in the fall of 2012. I leave it there to give perspective. It is now June 2013. Allistaire’s cancer came back in February of this year, showing up in a small lump in her back. We returned immediately to Seattle Children’s Hospital where she first received treatment. On February 25th, Allistaire began treatment for relapsed Acute Myeloid Leukemia that was in her back, the lymph node in her left arm pit and 1.1% in her bone marrow. The first round of chemo failed only days after receiving chemotherapy and the blast count in her marrow had risen to over 25%. The next round of chemo failed as well and resulted in a blast count of 80-100% in her marrow. We were told we could choose to be done with chemo and bring our little love home to die. We chose to continue because, other than her cancer, she was in good shape. We attempted one more round of chemo only to have it fail as well. The blast count was 73% in her marrow and must be 5% or less to be considered in remission and to move forward with a bone marrow transplant that is the only real hope at a cure. Under normal circumstances, Allistaire’s chance at survival would be less than 10% with a bone marrow transplant and so they would not offer her one and we would be bringing her home to end her days. We are so unbelievably thankful that there is a clinical study for a bone marrow transplant that allows patients to not be in remission. So this is what we are working toward.
In the last two weeks, Allistaire went from running around and riding her bike to being bed-ridden. This sad transformation actually occurred in less than 7 hours. Cancer has shown up now in both of her femurs, both armpits, her chest wall and in the lymph nodes behind her knees. We are in a race to complete the testing necessary to determine if she qualifies for the clinical study. She is currently getting radiation to her back and to the lymph node in her left armpit. Her conditioning chemotherapy is scheduled to begin on June 12th and her transplant will be on June 18th with a 10 out of 10 matched donor.
Allistaire’s chances of surviving are quite low. Yet we walk forward, through each open door, hopeful and determined until the way is blocked and the door closes. Every single day I soak my little girl in and every single day I seek my God – fixing my eyes on Christ. I am constantly peering into the Garden where Christ submitted His will to the will of His Father, that I might do the same. “For the JOY set before Him, Christ ENDURED the cross!”
It’s now November 2014 and time for another update. Allistaire did indeed get that blessed transplant on June 18, 2013. It was a spectacular day of rejoicing and hope, hope, hope. We prayed that not only had the chemo killed the cancer but that the mysteries of GVL (Graft Versus Leukemia) would do the same. Her Day +28 marrow was clear of cancer, however, on Friday, August 9th 2013, a bone marrow test confirmed she still had disease – a mere .01%. It doesn’t matter how small the number – it was there and we were told that Allistaire had a 5%chance of survival and probably wouldn’t live more than 6 months. It was devastating. The next morning I got on my bike to ride in the very first Obliteride – a fundraiser to support cancer research at Fred Hutchinson Cancer Research Center. Allistaire began the chemo, Azacitadine, right away and went into remission with the very first round. After having lived in Seattle at the hospital and Ronald McDonald House for 8 months, we finally moved home in November 2013. For the following 5 months, we returned to Seattle monthly for a week of chemo. She remained in remission and had her lines pulled in March 2014, just days before her 4th birthday.
After a little over a month home, we again returned to Seattle because of a complication of transplant related to GVHD (Graft Versus Host Disease) that resulted in issues in her lungs. We were able to return home in time to go on her Make-A-Wish trip to Disney World in May. Back to Seatlle we went in June for her one-year post transplant follow-up. Her results were phenomenal – every last test result was good, even great. July labs were good, as were Augusts and another check-up in Seattle. We returned home to Montana after my second time riding in Obliteride and hoped to begin a normal life. Allistaire started pre-school, swimming lessons and dance classes. She was thriving and full of joy and life.
However, on her first day of preschool, on September 3, 2014, she was crying from pain in her arm. The pain only lasted half a day and was then gone for weeks. Occasionally it would reappear briefly. After a few more frequent and intense complaints of pain, I brought her into her local pediatrician’s office on October 24, 2014. A “very concerning” x-ray of her arm prompted another trip to Seattle with the real fear of relapse. A bone marrow test, biopsies of her bone and lymph node and a PET/CT scan all confirmed her relapse in the marrow at .6% and in 6 other places outside of her marrow. She began a chemo protocol called DMEC which begins with 7 days of out-patient Decitabine. On 11/19, we moved into the Cancer Unit at Seattle Children’s and for five days she gets Mitoxantrone, Etoposide and Cytarabine. We will remain in the hospital until her blood counts recover and she has a bone marrow test which should be around 12/17.
Once again, her only chance of survival is a second bone marrow transplant. The hope is to get her into remission and shrink the solid leukemia to get her eligible for the transplant which requires a 10 out of 10 bone marrow match.
On my first night back in the hospital, I cried out to the Lord, “Come back, Oh Father Come back, and put an end to all this sorrow and suffering.” Would we yearn for something beyond this life if it were devoid of pain and suffering? I can only say for myself, that the severe brokenness around me presses a sort of inertia inside of me toward the Lord. I yearn for Him. Yes, I am desperate for Him. For most of my life I despised weakness in myself and others; I despised my finiteness. I have come to see that my weakness and finiteness is the very way into relationship with the all-powerful, infinite God. The Lord uses death and brokenness to produce life and wholeness. Ooooo, mysteries. I love that the Lord is not like me. He is utterly other. He is ravishingly beautiful and exquisite. I long for a happy ending to this story. I long for it to come in the now and the here. And while that may not be in this life, I know it will be in the life to come, and I have seen The Lord. I will worship HIM!
It’s July 2017 and so much has transpired. In brief, Allistaire got into remission with the round of DMEC in the fall of 2014 and went on to repeat the same DMEC round a second time in order to “bridge” her to a second transplant which was tentatively scheduled for March 2015. However, in early January 2015, Allistaire got an extreme case of Typhus, an infection in her gut which put her into septic shock. She in turn suffered severe heart failure resulting in 80 days in the Pediatric ICU. It was a terrifying time in so many ways and the condition of her heart disqualified her from transplant. The cardiology team became as important as our oncology and under the guidance of the incredible, Dr. Law, Allistaire was put on over 5 cardiac medications and over the course of 12 months was able to regain enough cardiac function to once again qualify for transplant.
During these months it was difficult to keep her cancer at bay given that her heart could no longer endure intense chemo and because of the weakness of her heart, certain aspects of treatment which require large amounts of fluids to flush the kidneys were uniquely challenging. Allistaire continued to have low amounts of disease in her marrow and suffered from tumors in her sinus and behind her eyes that caused a great deal of pain and necessitated focal radiation. Allistaire had great success with the use of Mylotarg, a monoclonal anti-body drug conjugate drug created at Fred Hutch in the lab of Irv Bernstein. Also, she was the first pediatric AML patient to receive genetically modified T-cells, sadly however, they seemed to have no effect. At long last, she had a Cytoxin T-cell depleted Haplo transplant in January 2012 with her father, Sten, as the donor.
I was told that Allistaire would likely not survive the transplant due to her heart condition. I was later told by the same oncologist that in truth, she was virtually confident Allistaire would die. Never the less, Allistaire flew through her transplant with no complications and had a clear set of scans on her Day +28 bone marrow biopsy. She was thriving and full of life and joy and turned 6 on March 6, 2016. Only a month later it all came crashing down in a span of mere days. In 3 days time we learned that Allistaire had 6% disease in her marrow and cancer spread throughout her body and then at her request, we returned home to Bozeman for the final time, this time for her to die. It was a time that defies words. After one week at home, Allistaire had a stroke of some kind and could no longer talk. She died one week later on April 30th, 2016. Please see posts from that time as I cannot here begin to adequately convey the immensity of that time.
See the post, “Facets of Broken” for the most recent update.
Thanks for the updates – I’ll pass the link on to others. Love you,
LOVE the family pic!!! beautiful!
Hello beautiful Anderson family! We are keeping you in our prayers and thinking about you!
Lots of love!!!
Kate, Bill, Ella, Coco & James
Dear Jai, Thank you for the update and the wonderful sharing of your heart and wonderful news! Your post is so encouraging and real. Gods riches blessings to your family. GiGi Carters gramma
Oh it is SO good to hear from you! How is little man Carter? Thanks for your encouragement both in the hospital and now! I pray all is well.
Dear Jai and family, March 19, 2013
I have sent a few cards to Allistaire hoping that you could read them to her and know that I was thinking of/praying for you. Like you, I am amazed to read tonight how her personality is changing and how angry and frustrated she is in with her limitations…so angry, that the sweet girl you love is slipping away even while her lungs and heart are fine. I am glad you have such beautiful family pictures (above) hadn’t seen those before. They will be important reminders of kinder times.
I texted you the other day and got a nice answer from your dad. Must have mistyped your #. I was offering to come visit but it seems like family is best now.. and that you need to rest when you are not taking care Allistaire.
Searching for what to pray for. I think more quality time for your family together. I glad you will be united this weekend. We will, of course continue to pray for miraculous healing…or that she be able to receive a bone marrow transplant and miracles that offers. We are all thinking of you all. And our hearts are very heavy. Please let me know, what is your heart’s desire…for the short run and we will pray specifically for that. I am going to guess at better quality time with Allistaire.
Lots of love from Robin and the BSF ladies
Jai and Sten,
What a beautiful family! I grew up Bozeman & attended Grace Bible as Melanie Guthrie…found your site through Christy Decker Millard. I cannot imagine what you ate going through! I have 21month old daughter; this age is SO precious, the thought of going through leukemia treatments at such a young age is terrifying. We will keep you in our daily prayers, for the strength of your marriage, your older daughter’s well-being, and of course for Allistaire’s healing.
Melanie, David, and Heather Podley
Dear Jai and Sten and family,
I went to the Master’s College and I am not sure if I ever met either of you but I grew up with Cindi Gunderson and went to church with Gunner( and Cindi too) and Peder and I started Master’s the same year and were in the same group of friends our first year at Master’s. Through Cindi’s facecbook updates, today I became aware of the struggles your family has been facing. My heart cries out for your family as I look at my 4 kids and think of how I would cope if the same thing happened to one of my kids. We will be praying earnestly for your family and for God’s gracious hand to be on your family.
Just discovered your story through a friend’s post on facebook. My heart swells for your family and all you have been through and are going through.
I don’t believe in consequences but that the Lord puts things in our paths and on our hearts and so am compelled to share with you the possibility of using essential oils to help your daughters body heal. (specifically doTERRA essential oils because of their level of purity and potency)
I would be honored to help you in this area if you are at all interested. I will keep your family in my prayers. Blessing to you. (from a fellow Bozemanite) Feel free to contact me. -Keri
Oh Jai & Sten,
I am crying as I write this. Your words are so moving & capture so much emotion, I just weep as I think of your amazing strength & faith. We wish so much to be there in person, but please know that we are praying for you all and we are there in spirit. I hope you feel our love…and we so wish we could do more.
With our prayers and thoughts,
Hello precious Jai. This is Kai from camp (Haleakala)- I live in Turkey with my family, and yesterday ran into someone who knows your family. He mentioned your baby girl and I have read and I am so grateful to be able to pray for you, so burdened to help carry with you what you carry. I love you so much and I love your precious family. I am praying, sweet Friend. Jesus is with you. firstname.lastname@example.org
A friend posted a link to your story on her FB page, immediately I clicked the link and read with tears in my eyes. I had to find your whole story as I found in you a voice very similar to my own. My daughter was diagnosed with Acute Promylocytic Leukemia at the age of 21 months. As I read your story my heart aches for you…may you continue to cry out to Jesus for your precious girl. My daughter had one transplant, relapsed, a second transplant, and is now 5 years post transplant. I will be praying for you, your family, and your sweet daughter. May God give you strength for each moment…and lavish His love on your family.
Allistaire–sweet little warrior that she is–and your entire family have been in our family’s prayers for months now. Our youngest, too, is an AML patient (currently in remission). I sit here crying tears of joy at your latest post! And looking back at older ones, remembering all too well the dread, the fear, and feeling absolutely distraught if I let my mind wander for even a moment to “what if…” I’m praying for her heart, for strength, for the transplant, and in His own perfect, precious timing, that you’ll hear “she is cured!” Praying with expectation for those things, feeling completely united with you by love as a mama to my own little fighter! God bless you all!
Thanks for the update. I am praying for Allistaire here in India. By His stripes we were healed. May our God Jehovah Rapha heal Allistaire completely.
Thinking of you.
Your little girl is beautiful. Im so sorry you have had to fight this beast so long and that it wont stay away!! Our daughter had neuroblastoma and we fought for 15 months. She has been off treatment for 2 years and still has clean scans. I know well what you were saying about holding and fighting and loving a child so much you cant comprehend them dying. And also the fear of return but not letting it rule you. We have been fortunate that Taylors has not returned and I pray God gives you special grace as you continue to fight for your little beauty. I will be following.
I found your story through my friend Nicole McClung’s Facebook post….
God bless your precious family!!! I will be praying for Allistaire, for Solveig (that is my cousin’s name, I’ve always loved it).
I am a 17-year breast cancer survivor and was misdiagnosed with non Hodgkin’s lymphoma in 2004, I spent a lot of time at SCCA.
It’s one thing to go through cancer yourself, I can’t imagine watching one of my children go through it. I will be praying for you all and lifting you up as parents!!! I know Jesus is with you and he is carrying your family through this. When I had my cancer, I always wondered, how do people walk through this without Jesus? He was my rock and my strength and continues everyday to be. I know that he is yours, too.
It would be such a privilege to pray for your family and to pray for your sweet little girl!
Your sister in Christ,
It was so good to see you at the airport! You looked amazing!
Celebrating today with you and your family.
Angelique, Rachael, Aureliana, and Craig
My heart weeps with you. Your daughter knew pain, but she knew immense love and caring, and parents who never gave up trying. I love her, and will think of her, and the joy she is bringing to our Lord. And my eyes are with tears for you all. I wish sharing your loss and your hurt could make it easier. My husband lost his daughter in a terrorist attack. She was an adult. He keeps it somewhere inside him. I don’t try to go there. He lets me know. The pain spills out and we don’t try to stop it. It is like the tide. Ebb and flow. Ebb and flow. Thank you for telling your story.
I’m so sorry for your loss my son Andres goes to school with your daughter and Haawken. Please let us know if we can help in any way. My heart goes out to you and your family.
With prayers for your family as I know that your sweet daughter is now in heaven. You are a remarkable writer and I find myself so encouraged by your faith.
I’m so so sorry for your painful journey and your loss of your beautiful child. No words can ever express…. I know you know that but, I want you to know that your faith, expressed so deeply here, in these beautifully written words; these heartfelt expressions of pain, sadness, love, hope, anger, confusion, abandonment and loss – had me repent of my desire to be someone important in this world and to look around at the collection of worthless, priceless objects I’ve coveted and then pack them away for trash and to rethink my relationship with Him, the one, TRUE, Savior of souls, hope and peace. I know you know that God makes all things work for the good of those who love him, who have been called according to his purpose. Isn’t this the Great Commission? I prayed for you, for peace, for comfort from His great hands and love. I will see you in Glory and thank you for turning me away from unimportant things to those matters that really matter. Blessings to you and your lovely family….