Every time Allistaire cries out in pain, I wince and I ask hurriedly, “where?” There are now nine places in Allistaire’s body that it seems there is cancer – in her marrow, back, lymph nodes in both arm pits, the inside of her chest wall, both femur bones and most recently, the lymph nodes on the back side of her lower femurs. It’s rapid spread and breadth terrifies. I lay in her bed with her and wonder if and when it will start showing up in her organs and start to strangle her life all the more. The blasts in her blood rose to 786 on Wednesday. We had a nasal swab done and awaited results, hoping for no RSV. For days, no, for hours and minutes stretched and strained, I was on edge, ever fearful that a doctor was about to walk in with a test result that would say we are done. Everything is moving so fast, which is welcomed in one sense after three long, slow months of chemo, but frightening as we see that we may be near the end. Where once we urged the passing of time, now the thudding of my heart pleads for it to slow.
Wednesday marked our official transition to the BMT (Bone Marrow Transplant) team. I actually had to sign papers to, “admit,” Allistaire which felt laughable after having been here so long. But so it began, and with no surprise, I am now met with a whole new group of incredible, intelligent, strong, caring women folk who round each day. God has blessed me with an attending BMT doctor that I actually know. Ann Dahlberg, was the doctor who conducted the expanded cord blood study that Allistaire participated in during her first round of chemo upon relapse. From the very first time I met Ann, I found her very easy to talk with and at the same time, one in whom you can place great confidence. We have had a number of great interactions since and so it was with joy that we began our time with the BMT team, having her lead the way. Wednesday also marked our first day of radiation. Due to the many, many spots of cancer in Allistaire’s body, rather than a small finite number, Dr. Ermoian, finalized our radiation plan with only doing her back and left armpit. (TBI is not permitted in the clinical study.) If he were to irradiate her femurs, she would be left with both legs not growing properly. To do her chest would put her lungs at increased risk and the conditioning chemo, Busulfan, already poses a great risk to them. All in all, the truth is we must entrust hard-core chemo and GVL (graft versus leukemia) to ultimately be her cure. The blunt truth is that she is either going to make it and why deform her or she won’t. He is choosing to do her back because leukemia in the skin is associated with a high rate of relapse. While they do not think she actually has leukemia cutis, because there is only one spot on her skin and it is actually below the dermis, the skin still gets less blood profusion and thus is less accessible to chemo. We debated the worth of doing her arm pit, but because the risks are not too high in that location and because it could reduce the pain she is experiencing, we are starting with 5 doses and then will re-evaluate. I only have one pic so far of our radiation experience. I will try to get one of the actual machine which is quite impressive, but the one you will see is of the door to the room. The door is in the foreground on the right of the picture and as you can see, is just over a foot thick. That first day I felt quite nauseous walking her past that door. But, as with so much of this, every terror is met with the awareness that she is still with us and as long as she is, we have a chance and with out these terrors, we have no chance.
Thursday afternoon I sat in an overly warm room with the four kind faces of Dr. Dahlberg, Deb, the transition nurse, Ashlie, our fantastic social worker and Michelle, my strong and sweet support from the Pediatric Advanced Care Team. Sten joined us via Facetime on the iPad. The purpose of this “Arrival Conference,” is to communicate what is known about Allistaire and her disease, the purpose of transplant and the specifics of her transplant, including what testing must be done in advance. The meeting began with my offering of a few unbelievably delicious Bequet Caramels made in Bozeman and the frank fact that with the tremendous amount of disease in Allistaire’s body, without this clinical trial, we would be having the conversation about this being the end and how to arrange to take her home to die. You know this is true and you know it must be said, but I tell you to sit there in the actual room with the conference table and the papers spread out and to hear that Allistaire has less than 10% chance of surviving with a standard transplant and that normally she would not be offered a transplant at all because her odds are so poor, well – everything in you repels this reality and at the same time, hugs close that you are being offered a chance where normally there would be none.
At this point in our journey, I now know enough stories of other kids to have an idea of what can happen in transplant. The list of horrors is too long and too exhausting to convey at the moment. I will attempt to relay the basic phases of transplant. Once you have had all the necessary testing to determine your body is strong enough to proceed, and the stem cell source is arranged, conditioning begins. In Allistaire’s case, conditioning will consist of five days of chemo including Clofarabine and Busulfan. These chemos are extremely toxic and are given at incredibly high doses, all in the hopes of utter annihilation of her bone marrow. The goal is to destroy every last cancer cell. When Allistaire first relapsed, only a small percentage of her cancer cells had the MLL (Multi-lineage leukemia) mutation. Now nearly 100% are MLL. These are some crazy resistant cancer cells who have survived seven incredibly hard rounds of chemo. We have to hope and pray that they cannot stand up to these two powerful chemotherapies that they have never seen before. At this point conditioning is set to start on Wednesday, June 12th.
Because the conditioning chemo not only wipes out cancer cells, but also destroys all blood stem cells, a new source of stem cells is required. Assuming everything remains on track with the donor, Allistaire will receive an infusion of donor PBSC (Peripheral Blood Stem Cells) on Tuesday, June 18th. Transplant day is considered “Day Zero.” During this time Allistaire will be feeling the effects of her conditioning chemo which include nausea, vomiting, intense fatigue, and very likely mucositis which is “painful inflammation and ulceration of the mucus membranes lining the digestive tract.” Additionally, there are all sorts of complications that can arise with any or all of her organ systems. Because of her extreme neutropenia (depleted immune system), blood stream, viral and fungal infections are also very possible and dangerous. The number of meds in anticipation of all this has already increased to include Acyclovir to help prevent viral infections, Ursodiol to help the liver and Enalapril to strengthen her heart.
Around day 14, Allistaire’s new cells should start to engraft which means they will have traveled to her bone marrow and begun to make blood cells. On Day 28 a bone marrow test will be done to determine the percentage of donor marrow. Around Day 30, the effects of Acute GVHD (Graft Versus Host Disease) will begin to show up. GVHD occurs as the T-cells of the new immune system attack Allistaire’s body as foreign. The purpose of a really good stem cell match up front is to reduce the intensity of GVHD, but a PBSC transplant has more T-cells than a transplant where the stems cells are taken directly from the marrow. In some cases, they will remove a portion of the T-cells from the cells to be donated but not in this protocol. The most common locations in the body of GVHD are the skin, gut and liver. During this time, the doctors try to play a balancing act of giving immunosuppressants that allow the new stem cells to engraft but not allow them to rage against the host body. The long-term effects of the transplant due to the chemo includes sterility, hormonal problems, growth problems, secondary cancers, organ issues. Chronic GVHD is also a real possibility. For a more complete, description of bone marrow transplants, see this link to the National Cancer Institute.
What I’ve described above is always the reality for someone going into a bone marrow transplant. The risks are high and are only worth it if you have a good chance of it working. In Allistaire’s case, she has a relatively low chance of it working – exactly how low, we do not know. The studies that have been done with this combination of Clofarabine and Busulfan have been done on such a varied group of ages, disease burdens and even disease types, that it is hard to really know where Allistaire would fall in the statistics. The survival rate in this study was 30-40% after two years. All of the patients had some sort of relapsed myeloid cancer. Dr. Dahlberg emphasized that Allistaire is at extremely high risk of this transplant failing, of relapse, because of how resistant her disease has shown itself to be. It is hard to think of putting Allistaire through all of this with the thought that it is very likely it will not work. It is honestly also hard to think of having to live this wretchedness for longer – either in the relatively short time of a few months or up to a year or two. It is awful to imagine making it through only to have a new cancer from your chemo or having your body disabled. Yet, Sten and I continue to feel determined to walk forward until the door is closed for us. We do it all with the hope that this short-term physical pain will result in longer life for Allistaire. There is also the awareness that this transplant could bide her life for a year or two and in that time, another option might become available. I absolutely don’t want to have to live clinical study to clinical study, but this may be our path.
The encouraging part of the meeting came when we began to talk about eligibility. Allistaire must meet all eligibility requirements at the time that she is registered for the study, which may only occur within four days of conditioning. Four days ahead of the 12th lands on a weekend which may mean that she would be officially registered on Monday, June 10th. What this means is that we have 10 days in which to get Allistaire in a position to be eligible. A number of tests that I thought could bar her from eligibility look like they will not. She does not need another CT scan or echocardiogram. Her most recent CT does not show any respiratory infection and her echocardiogram actually showed an improvement in the ejection fraction of her heart, up from 47 to 50 and it only needed to be at 40. She will need another bone marrow test, which will take place next Tuesday, but the only purpose is to provide a sample for the study. Clinically her lung functioning looks excellent. Amazingly, while a nasal wash was conducted last night, even being positive for RSV will not prevent her from moving forward. A number of additional viral tests are being conducted but ultimately it looks like there are two main standards of eligibility which will pose the greatest challenge. The study does not allow a peripheral blast count of over 10,000. We are so excited to see that once the chemo, Decitabine, was added, her blast count has started to drop. The last three days it has gone from 784 to 615 and was 408 this morning. I am praying these blasts will go to zero and stay there, though we only really need them below 10,000. Lastly, her LFTs (Liver Function Tests) cannot be over two and a half times the norm. Dr. Dahlberg realized today that one of Allistaire’s liver enzymes is indeed over two and a half times the norm and at this point would disqualify her. The level is at 114 when the norm is 40 and so we need it to be 100 or less. This number was not even noticed previously because it is completely normal within the realm of what Allistaire has gone through and there is no additional indication that her liver function has decreased. Dr. Dahlberg thinks that these elevated levels are most likely due to one or more mediations Allistaire has or is receiving. The methotrexate chemo that she had up until two weeks ago can raise these levels and the effects may not have yet passed based on how recently she had this chemo. They have ordered her anti-fungal med, voriconazole, switched to Micafungin starting tomorrow. This med can also raise this liver enzyme. Additionally, the Ursodial, which helps clean out the liver, has been increased. Hopefully these changes will be enough to lower the levels that are too high. As a last resort, the Hydroxyurea chemo could be discontinued as it can also have an effect on the liver. Of course we need all the chemo to keep the blasts down – so again, it is a balancing act.
While I was so amazed and relieved at how likely it now seems that Allistaire will be able to proceed with the transplant, the realities of what is before us and the great potential for failure, weighed so very heavy after the meeting. I sat in the quiet room at the end of the hall looking out over the sea of green trees and sky wondering how in the world I am supposed to keep going. I wondered how I could possibly endure Allistaire actually dying and being gone from our lives, an ever-present hole. I confess I often want God to answer me far quicker and more dramatically than He does. I am realizing that I want my hope in God to stand in place of the pain. The difficult truth is that God’s promises stand alongside the pain because ultimately they are promises – some of which are yet to be fulfilled and others are fulfilled but outside of our sight. At the same time though, there are present promises, but even these do not necessarily come at the rate of speed that I often want. God promises me peace that passes understanding. I do not sit there facing Dr. Dahlberg telling me of the great likelihood that Allistaire will die and smile and have no pain or fear. That would be absurd and yet, not so very long after in that bright room, the tide of pain was slowed and met with the greater force of God speaking. “You walk with me.” “You eat the manna.”
Sometimes the great sweeping promises of God leave you wondering how they will actually take place – how tangibly they will come about. It is great to have the hope of a resurrected life and heaven and no more tears or pain, but I still have to live somehow in the now. But how? Just the thought of enduring is tiring. But then He met me and reminded me that all immense journeys are taken one small step at a time. I must not only live one day at a time, it is one small action after another after another. Endurance is tedious. When the alarm goes off, you actually get out of bed. You will eventually make it down that ever so long hallway to the showers. You go through each step and then it is time to eat. You look the barista in the eye and try to offer up words to the question of, “how are you?” Whatever the day holds, you step forward and little by little you have lived through a day you thought might crush you. Eventually the days amass and you have lived a week or a month you thought previously impossible. But here is the savory truth, it is the manna which enables you not to just survive, but to grow and live and rise up and swell and overcome with beauty and grace and more life, not less of it. Humans are capable of amazing feats of endurance and yet it seems that it is the unique provision of God that can transform endurance of sorrow into beauty and life. Even as I say this though I am aware at how differently life is defined by the Christian. Ultimately the Christian’s greatest joy is to dwell in the presence of God and know Him more. This, He is faithful to abundantly provide.
The first picture is of Allistaire in pain from the lymph nodes on the back of her legs. Such a sadsy face 😦
Tonight I have the joy of including some pics of Solveig flying her new kite down our driveway back home. Everything about these pictures bring me joy and are taunting at the same time. How I wish Allistaire and I were home with Sten and Solveig, flying a kite in the wind and picking flowers on a stormy spring day.
Your posts make me yearn for a deeper connection with the God we both serve. While I know you would never want it to have been this way, you communicate a closeness to Jesus through your writing that is beautiful in it’s tragic nature. Thank you for continually sharing this saga with all of us so that we can pray with you, cry with you, and rejoice with you…in any and all parts of it. Your family is absolutely lovely – which you of course already knew! – and I am blessed to get to walk with you [from afar relationally and physically]. Again, thank you for sharing both the science updates and the intimate details of your faith journey as well.
I so appreciate your sharing your faith through this journey! God’s presence in your life has given you courage to face the unknown step by step, day by day. God blessed you and your husband with two wonderful daughters. And He must be so pleased with the care and love you meet both their needs however distant you are from each other. I’m praying that your continuing journey in Allistaire’s care be sheltered in the gentle arms of the Lord. You all face the such an unbelievable challenge and you have dealt with everything so far with dignity and grace. I pray that Jesus, our Lord and Savior, guide you and uphold you in the days ahead!
Dear Jai & Allistaire… Good morning! I woke up early today thinking about you. It is June 1, & 34* in Bozeman, I think my petunias are glad they are still in their 6 pack tucked up on the porch where they can’t freeze. I am a childrens leader at BSF in the wee tots area. God has tucked you in my heart & I am sending you prayers, hugs, kisses, some extra Mommie & Nanny…(grammie) love. I wish I could just wrap my arms around you & sit with you. I am thinking of the pillar of cloud by day & the pillar of fire by night… HE GOES BEFORE YOU… HE COMES BEHIND. I tried to play God of the Angel Armies by Chris Tomlin this morning… it always encourages me, lifts my head. Much love to both of you today… Jackie
Allistaire and family: We are holding you in our hearts.
Dawna Lynn Wells and family.
Oh, Father. Cover and protect and preserve Allistaire. Carry Jai and Sten and Solveig through these difficult days, each step of the way.
Oh dear Lord Jesus, Abba God, Holy Spirit, come be our Banner, our Shield, Our HighTower, our Redeemer, please please Abba Redeem this little life from the enemy of death. Send diese, and death far far, away from Allistaire hold, up, build up, all the loved ones. Thank you for everything and everyone youve sent to help, , I pray, let it not be in vein now. Let the suffering end soon but with a happy, miraculous ending. Please remove the pain from baby girl alli. So, many love her so Abba…. But, we see blindly, so we pray for discernment and faith and trust… You alone have all POWER, ALL KNOWLEDGE AND WISDOM, AND YOU ARE ETERNALLY LOVING AND KNOWS IN PERFECT LOVE, WHAT IS BEST. WE STAND ON THE WORD AND IN FAITH IN OUR GOD….. FATHER, SON, HOLY GHOST. AMEN THANK YOU, JESUS. GIVE WISDOM, PEACE, AND STRENGTH , AND ABUNDANT LOVE, TO STEN, AN JAI. HOLD THEM HIGH TO YOUR FACE. AMEN. WERE with u all… All the way. Joette. Wish i could do more.
Jai, praying every day for sweet Allistaire and for you, as well as for Sten and Solveig back home in MT. Praying for healing, praying for strength, praying for peace, praying for reuniting with your family…and for all those things that I have no clue what or how to pray but trust that Christ is at the right hand of God, interceding for you on your behalf and that the Holy Spirit intercedes with groans too deep for words. I was looking for an address to send a card (my 5 year old made a card a few weeks ago for Allistaire and has joined me in prayer for her) but I believe the last address you posted was before you moved to the new cancer unit. Counting down the days with you until transplant and holding on to the hope that Allistaire’s statistics will fall on the favorable side.
Sten, Jai, Solveig, and Allistaire…My heart goes out to all of you and I feel your pain. I have been praying often since I heard but have not commented till now. I held two grandchildren as they waited for Jesus to take them in his arms. I loved every moment of it through tears and whys. I miss them deeply but loved every cuddle, smile or just a glimmer of recognition. I wish I could be there to give you support but maybe just knowing that Dennis and I will be praying will give you the strength to make every minute count. We will continue to pray often.
Our family continues to cry out to Jesus on your behalf. Lord. Come. Comfort.
I began to read this post aloud to my husband today as we drove to Emily’s house. I couldn’t get past the first few sentences. We both wept. My brain cannot wrap itself around this, but my heart knows our Jesus is faithful. He is gracious.
Allistaire has been so heavy on my heart today as have you and sten and solveig. Jack and I just sat down and prayed for y’all. I pray you feel the peace only Jesus can provide.
Also, thank you, from the depths of my heart for sharing this journey with us. The way you so beautifully write this painful story is so glorifying to Jesus. It speaks volumes of who He is and His greatness despite the tragedy this world brings. So, thank you for your vulnerability and willingness to show your heart and your struggles, all the whole making much of him.
You are deeply love and prayed for by this family.
You have a beautiful way with words, Jai! Our family is still and always praying for you, Sten and girls! My brother-in-law went through a bone marrow transplant around 1980, so some of the things you write about remind me of the steps he went through. May the Lord give you His daily strength and keep His arms around you!