The last several days have been a whirlwind so this will be brief…
Tomorrow is the big day which really, won’t look like much at all on the surface. Like countless days before, Allistaire will have labs, see the doctor and have an infusion.
The day begins at 8am at Seattle Cancer Care Alliance with a lab draw followed by being seen by Dr. Ann Wolfrey, the BMT (Bone Marrow Transplant) doctor who is assigned to this trial. Per trial protocol, she will examine Allistaire and make sure she is fit to proceed with the T-cell infusion. We will then head over to Seattle Children’s Hospital Hem/Onc (Hematology/Oncology) Infusion Clinic. Around noon, the research nurse for the trial will arrive with the cells and the two-hour infusion will begin. Allistaire will be closely monitored in clinic until 5pm at which time she’ll transfer just down the hall to the Clinical Research Center where she and I will spend the night. Dr. Wolfrey will also be spending the night in order to respond to any issues that could come up and to examine Allistaire in the morning. Assuming all is well, she’ll be done around 8 in the morning.
Severe reactions to the T-cell infusions have not been seen on this trial as is the case with the CAR (Chimeric Antigen Receptor) T-cells used to combat the more common type of childhood cancer, ALL. This is both good and bad. Because of the poor condition of Allistaire’s heart, she would not qualify for the CAR T-cell trial were she to have ALL. However, the extreme immune response may also be indicative of the effectiveness and amazing success seen over the past two years with this new ALL treatment. As I have said, Allistaire will actually be the first child to receive these genetically modified T-cells that target the WT1 protein on leukemia cells. One thing that makes her different from other participants on this trial, besides being a child, is that she is on absolutely no immune suppressants. Most folks on the trial have much more recently had a bone marrow transplant and are likely to have at least some GVHD (Graft Versus Host Disease) which necessitates the use of some immune suppressants. While Allistaire had mild acute GVHD after her bone marrow transplant, she has been off of steroids for well over a year so these T-cells will have nothing to suppress or hinder them. Drops in blood pressure and fever are possible signs of an immune response. Actually determing the effectiveness of these cells for Allistaire would take much longer and really can only be determined with the scans and bone marrow tests she always has to monitor her cancer, none of which have yet been scheduled for the future.
I am so thankful for this open door. It would have been a very hard pill to swallow if Allistaire had never had the opportunity to have this genetically modified T-cell infusion, knowing these cells were crafted just for her. At the same time, it has been a very long time since her last chemo and this process of gaining the IRB approval has added weeks to the time that her cancer has had the opportunity to grow. Honestly, the doctors are not super optimistic about the effectiveness of these T-cells against chloromas which are Allistaire’s biggest challenge. Boy would I just love it if these T-cells were her cure and we could at long last be done with this whole crazy thing. On the other hand, if they could just buy her a chunk of time in which her heart could continue to repair and get stronger so that she could go onto have a second bone marrow transplant, well, that would be awesome. I can’t think too much about it though honestly. Even a good road ahead would necessitate many more months. I’m flat worn out.
Another mom we met months and months ago stopped me in the parking garage at the hospital today. Her little guy has neuroblastoma and despite doing all sorts of crazy intense treatment, he’s not in remission. She asked me how I do this. I didn’t tell her I rely on God. I told her sometimes I think I’m going to lose my mind. Sometimes I feel like I’m being crushed in a vice. But what choice do we have? I asked if she’ll be in clinic tomorrow and she said yes. I want her to know I feel the searing pain, the deep, deep ache. Jesus comes to us in our sorrow, in our broken heap of ourselves, our messy, screwed up lives. He mourns with us. I mourn with her. I mourn with another mom who lost her sweet girl earlier this spring. She amazingly, courageously, compassionately texts me regularly to convey her sweet heart toward us, cheering us on. I so want Allistiare to live. But sometimes I wonder, am I to cross over that line that I might sit and mourn with those who have lost their child? Am I to know that loss that I might have a voice in that dark, brutal land? With weeping heart and trembling hand, quavering voice, may I sing of a God who meets us in the dark, pointing to His beauty, resting in His wild audacious promises of redemption, or resurrection, of love that defies our small ideas of good.
I flew back to Seattle from Bozeman early this morning. I went home for just over 48 hours so I could be there for Solveig’s birthday party, to witness the mysterious tribe of 4th graders unfurling, running laps around the house and through the yard, squirt guns and chocolate cake and massive balloons and Solveig giggling over the fact that Jake wrote, “Love Jake,” on her birthday card. As our plane headed west the clouds slowly increased. We flew at 25,000 feet. I thought I could make out the great curving rend of land to the east of Whitehall and then the scarred earth of the mine nearby. Little flits of clouds became strangely speedy fleeces blocking the land. Here and there whole canyons and low places where entirely engulfed in white. Having grown up in Washington, countless days passed with that blanket of gray, drab, draped over the curvature of our wee bit of sky. A smile flooded by fatigued face as I remembered the first time I flew up out of the clouds of Seattle as a teenager into a brilliant azure sky. It was disorienting in a laughable, delightful sort of way. But, but…I thought the world was gray and drab and depressing?! And all this time, just beyond the scope of my eyes there existed a beautiful reality far more vast in its expanse than my view of horizon to horizon? So my view is not all there is?
The clouds, they come and go. The blue of sky is always there, always, even when I cannot see it at all, even when it seems the whole world is made of drab grey. Father above, thank you for your constancy, your vastness, your reality that transcends my transient life and circumstances. Tomorrow is the day you have made, and I will be glad in it!
By the way, tomorrow Allistaire will wear a very special shirt. It is the same shirt, just two sizes bigger, than the one she wore on a very special day just over two years ago. On June 18, 2013, Allistaire was given another infusion, one that like that of tomorrow, looked deceptively simple and uneventful. On that day, Allistaire was given the stem cells of a woman from the other side of the planet, in order to “rescue” her, in order to give her a chance at new life after the old marrow had been wiped away. Tomorrow, that woman’s compassionate, generous heart has made a way, yet again, for Allistaire to have another chance at life. It is her T-cells that have been genetically modified and will be sent rushing through Allistaire’s tubies into her flesh. Thank you to this unnamed woman, thank you. We long to meet you in person one day. We are so indebted to you. If YOU would like the opportunity to save someone’s life, you can sign up at Be The Match.Org to be on the bone marrow registry.
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18
Thanks so much for this update, Jai. I am praising God for this opportunity for Allistaire and I am praying for God’s strength and comfort and peace for you and Sten.
Who among the gods is like you, LORD?
Who is like you–
—Majestic in Holiness, Awesome in Glory, working WONDERS?!!
Great Sovereign Lord, please breathe NEW life into this beautiful girl and her family…this side of heaven…They are trophies of YOUR GLORY! Flow through these stem cells and show us Jesus!
Loved seeing you over the weekend! We will be thinking of you guys with hope and lightness in our souls. Sending you all the best.
Thanks Jai for the update and praise our Lord for His mercies. What a way to start our trip!!!
Jai and family: You are always in my heart. I cannot fathom the fatigue with the roller coaster cancer has you on. As always, thank you for the update. It must be very hard to sit down and write after such exhausting days.
Dawna Lynn Wells
My 🙏ers have been going up for ALLLLLLL (doc, family, donor etcetc) re. This part of your Journey that GOD has you and your family on !!!!! Sending this w/(((((((HUGS)))))) from GOD & me…HIS LO❤️E & mine, Vanita (Scott V’s mom:-)
Hugs and Prayers.
Oh, Lord! Thank you for these genetically modified T-cells and the scientists who developed them. May You work a miracle in Allistaire’s body through the amazing workings of the T-cells that You designed when You put our bodies together!
Jai, I’m praying!
I prayed all day yesterday!! Can’t wait for the update, I will continue praying for miraculous healing and over your conversations with that sweet mom. Your praises of God stop me dead in my tracks every time. They cause me to ask,”what kind of God is this that she can praise Him so fully, so abundantly from such a dark and terrifying place!” Your ministry does not have to wait for the worst case scenario- you are ministering to all of us right now. Warring with y’all in prayer!!!
Praying unceasingly for you and your girl!
We’re praying for you all continually!
Sorry for my awkwardness today when we met you in the hallway. We’ve been worried and praying for you all, and I never expected to see you when we were there for our appointment.
I hope things are going well.
Just wanted you to know I’ve been praying for you guys ever since I “met” you all through this beautiful, painful blog. I’m praying for you especially now.Waiting anxiously to hear, and meanwhile clinging to what is True: Our Abba loves Allistaire, He loves you. He is in control. He’s got this. Psalm 131 is where I’m at, going through some very difficult things recently. It’s also my prayer for you, Sven, Solveig, and Allistaire. With deepest love in Christ and shared tears, Janelle P.