My eyes blink and blink, looking around, trying to clear my vision. Chest compressed and struggling for breath, the wind knocked out, a severe blow. No words form on my tongue, just desperate to get air. When I walked up to the door I expected it to open and be welcomed in, feeling a bit giddy. The next moment the fist connects with my jaw, so hard and fast I hardly feel pain. I find myself crumbled on the floor, all the strength drained from my legs, hands shaky. It’s taking a while to even want to get up, to even test my ability to rise.
Everything was set, down to the small details, two beds in the room or a crib and a bed? We were to go to SCCA (Seattle Cancer Care Alliance) Thursday morning at 8am. Dr. Wolfrey, one of the BMT (Bone Marrow Transplant) docs would examine Allistaire and labs would be drawn as outlined by the trial protocol. We would then return to Seattle Children’s for Allistaire’s scheduled dose of IV anti fungal. Around noon, the research study nurse would arrive with Allistaire’s genetically modified T-cells that took six weeks to create. By 1pm the two-hour infusion would begin and she would be monitored very closely. Once the infusion was complete, we would transfer across the hall to the CRC (Clinical Research Center) where we would stay overnight until 8am when Dr. Wolfrey would again examine her and determine if she could be discharged.
Many times Wednesday morning, as we spent a few hours in clinic getting her anti fungal infusion, various staff popped by to share the excitement for the T-cells scheduled the next day. Congratulations all around. Nurses near and dear to us, each saying they wish they could be our nurse on Thursday to give the infusion. I saw Dr. Cooper in the hall, knowing he probably didn’t want me harassing him to find out if he’d heard the decision from the IRB (Internal Review Board), but I couldn’t help myself. N0 he hadn’t heard, but they won’t say No he said. Mid-morning the research study nurse called to say that the IRB would meet that afternoon and she would call me probably after hours with their decision. So nerve-wracking. I’ve come to trust nothing until it actually happens, so very many times we have been disappointed and forced to cancel plans. But still, it all sounded like a simple formality.
Everything was moving forward. I comforted myself with the reminders that Allistaire’s situation was vastly improved since Dr. Egan first proposed going to the IRB to ask for exceptions. Her ileus had fully resolved and as of Monday, she was completely off TPN (IV nutrition). Her echocardiogram on Friday produced an ejection fraction of 41, one point over the needed threshold. That meant the two big “Grade 3 Toxicities,” were gone, irrelevant. Really the only remaining issue is her lack of count recovery. The protocol dictates that if there is no leukemia present (specifically in the marrow) then the patient must have an ANC of 1,000 and platelet count of 50. If there is leukemia present, then the thresholds are an ANC of 500 and platelet count of 30. A marrow that has leukemia present is less able to produce the healthy blood cells. In Allistaire’s case, both the Flow Cytometry and FISH tests showed no evidence of leukemia in her marrow. She still has leukemia as evidenced by her remaining chloromas but nothing shows up in her marrow. Allistaire’s cancer cells show characteristics of both M5 and M7 AML. M5 is known to be associated with chloromas and M7 is “associated with marrow fibrosis due to megakaryoblast secretion of fibrogenic cytokines.” What this means is that the landscape of Allistaire’s marrow has been permanently changed due to secretions by cancer cells that have created a web like structure in her marrow which in turn makes it harder for the blood cells of her marrow to recover. Not only has her marrow been long battered by the effects of so much chemo (21 rounds of chemo each containing 2-4 different types of chemo), but her cancer cells themselves leave behind their wretched imprint. So…the point is, Allistaire’s marrow is very slow to recover and the time that it takes to reach these count thresholds required by the trial also means a whole lot of time for her cancer cells in the rest of her body to continue to divide and increase.
We are in a hard place. Giving Allistaire’s marrow time to recover counts so she can qualify for the trial allows the rest of her disease lots of opportunity to increase which makes this T-cell therapy far less effective. Any future chemo that is intense enough to keep her cancer at bay will also suppress her counts. Less intense chemo won’t suppress her counts as much but more than likely will not stop her cancer. We are in this wretched cycle that seems to repeat endlessly and to have no way out.
As the day turned toward evening, the waiting intensified like a very taut thread. I called out to God, reminding Him that I am made of but dust, I am a vapor, a mist, a spider web, a flower in the field soon to fade. I called out for mercy, mercy Lord.
A little after 6pm, Dr. Egan called. “I am so sorry Jai.” I tried to listen. I tried to hear what he was saying. Like garbled words I could not make sense of what I was being told. The IRB denied the request for exemptions. “What did you ask for?” I pleaded. The IRB just gave an answer of, “No,” for now and will provide a letter of explanation on Monday. Did Dr. Egan ask for too much? Were his requests too broad? It seemed from what I heard that he asked for exceptions that would apply to all patients going forward. Who are these folks who make up the IRB? I want them to see Allistaire’s face. I want them to see her dance, hear her laugh. Yes, yes I know that all these numbers about her matter, they too are truth, real, but they are not the whole story, the full picture. Look at MY CHILD!!! But you see, this is the hard part about cancer research. This is research, this is not a standard therapy. This is an experiment in its truest form. The first commitment of a doctor is to “do no harm.” Harm? Wow does this feel subjective! I mean I’m pretty sure death is harm. Chemo is harm. Surgery is harm. Radiation is harm. Harm. Harm. Everywhere harm. But wouldn’t I cry out for it again and again if I thought harm might make a way through for life?
But you know, I do understand. I do respect this mandate to do no harm. I respect that it causes a doctor, a researcher to pause, to carefully consider. The hard thing is we’re working in the world of unknowns – we don’t know if these T-cells will work, we don’t know what harm they may also cause. It is ever so important that this trial be carefully designed and carried out. The whole point of a Phase I trial is to determine if it is safe – if there aren’t toxicities that result from this therapy that negate its potential value. Once it is determined to be safe with relatively low risk, the next phase of research looks at efficacy. There was actually a T-cell trial that used a different type of virus to alter the DNA within the T-cell that ended up causing ALL (Acute Lymphoblastic Leukemia). That trial was shut down because folks trying to have their cancer cured actually got cancer directly from the experimental therapy. It is not reasonable to ask or expect the IRB to sweep aside all concern because we are desperate for Allistaire. While I hope they will consider her as an individual I also understand that the point of this trial is for the benefit of anyone with relapsed AML, child or adult. I do not want to stand in the way of carefully conducted science. If you read the fabulous book, The Emperor of All Maladies, you will learn how the “radical masectomy,” became the standard treatment for breast cancer between about 1895 and the mid 1970’s, ravaging and brutalizing women’s bodies it turns out without benefit. It took a serious clinical trial to show that theories about how cancer metastasized that had been taken for granted as truth, were in fact false, only after thousands of women endured horrific, disfiguring surgeries.
I should also mention, Dr. Cooper was fairly awed that Fred Hutch is even willing to open this trial to children. It is precisely because Allistaire is a child, the very first child in fact, to ever attempt this therapy that the IRB wants to tread with such great caution. “Because no one wants to see a kid die?” I ask Dr. Cooper. Basically that’s it. Everyone has a much harder time seeing a kid hurt, even die, harder than seeing a 75-year-old person with AML and has had the chance to live. The thing is, if kids die, a trial is more likely to be shut down. This is a problem – for everyone. Far fewer kids get cancer than adults so it is not financially lucrative for a pharmaceutical company to trial a drug that might work against a childhood cancer until it’s been proven to work in an adult cancer. Adult cancers are what bring in the money. Kids are a financial liability. The irony is that the bodies of children have a far better shot at enduring the toxicities of a drug that would kill an adult. Here is a statistic worth pondering: “The average age of a cancer diagnosis for an adult is 67 years old, equating to an average of 15 years of life lost to cancer in contrast to the average age of a cancer diagnosis for a child which is 6 years old, equating to an average 71 years of life lost to cancer.” The National Cancer Institute only allots 4% of its budget to pediatric cancer research and it is not a money-maker for pharmaceutical companies. Who’s going to pave a way forward for kids with cancer? I am so thankful to Fred Hutch for being working so hard to open this door for kids with AML. I am also thankful for organizations like The Ben Towne Foundation, St. Baldrick’s and Cure Search that raise funds specifically to accelerate cures for childhood cancers.
This denial has been a severe blow to my heart. Having everything set up with the expectation that we would move forward with the T-cell infusion, only to be told No at the last moment has been extremely emotionally shocking. I have felt quiet these last few days, not really interested in hearing what people have to say or saying much myself. While it would be nice to believe, as some do, that because God has brought Allistaire so far, He will continue to open the door for her, I don’t hold to that idea. I fully believe He is able, gosh I really believe that guy, God, if He really is God, it’s simply not hard for Him to make a way forward for Allistaire. I mean, I’m pretty sure if he designed atoms and stars and the DNA double-helix and orangutans and sunsets glinting off snowy peaks and oceans deep teeming with wild sea life – I know He is able. He is able!!! The thing is I equally believe with my whole heart, with every fiber of my being that He is other, He is infinite and my finite mind cannot begin to fathom what He is up to, because one thing I know, is that this whole crazy seeming mess is about more than Allistaire and her one little precious life. This is about more than me loving my daughter desperately and wanting to know her all the rest of my life. I’m telling you, it had better be about more, because there are times when death seems like grace, an end to this struggle.
What’s rocked me is seeing how God resolved her ileus just in time and increased her heart function to just enough to qualify for the trial. It seemed He was opening doors. And they are open doors still. But then wow, the door slammed right in our face, a very hard blow. A friend told me she wants to study God’s promises. This is a crucial question – what does God actually promise? What are the strongholds which God declares I can grab onto? It is imperative that I reach for what will really hold. I texted my Seattle pastor this morning saying I need help. I feel I am in a storm which threatens to tear me limb from limb. Later I saw that back home in Bozeman, my pastor Bryan will be teaching on the book of Job. He says, “The book of Job is a storm. At the beginning of the story, storms strike Job’s house. At the end of the story, God himself speaks out of the storm. In between, chaos and darkness reign.” Who am I to liken myself to the righteous man Job? What I want, truly, more than anything is that God would delight to use my life to illuminate His life-giving beauty. But oh man, do you know what happened to His Son? God the Father allowed His son to be crucified for the salvation of the world, that all might receive eternal life through Christ. And Jesus yielded to the Father, “for the joy set before Him.” I am far, far too frail and finite to endure. I am in desperate need of my Father to hold me up. Hold me up Lord.
From my youth, my brain has been a brain that never ceases roving, roving, searching. In 10th grade when I took computer science, I would go to sleep contemplating algorithms, sometimes waking with the solution. It’s not always handy. Often I wish I could shut it off. My mind has circled high and low, over and over this predicament, inquiring of every angle, searching for a crack, a path through, like water through rock. Thankfully Allistaire has one seriously awesome doctor and one that treats me with respect, who allows and invites me to be a part of this problem solving endeavor. Both Thursday morning and this morning, Dr. Cooper and I were able to discuss the situation, what is known and unknown, what sort of “strategerie,” might be best. As of this morning Dr. Cooper was able to hear from Dr. Egan who had in turn been able to talk to one of the members of the IRB. This person recommended Dr. Egan resubmit his request. It seems that the IRB’s perception of the requests were for quite wide sweeping exceptions that would pretty substantially change the protocol and might even require FDA approval. I know that he asked for exceptions regarding Grade 3 Toxicities in general. At this point, to our best knowledge, Allistaire does not have any issues that count as Grade 3 Toxicities which would negate the need to even bring up anything related to Grade 3 Toxicities. Really she just has low blood counts. Tomorrow she will get another set of labs and I am so hoping her ANC and platelets might be on the rise. Dr. Egan will resubmit today or Monday, though the IRB will not meet again until next Wednesday. This may be our last shot for Allistaire to get her T-cells.
I will not shake my fist at God. I don’t understand. His plans baffle me. Though I do not see, I will bank all my heart on Him. I will thank Him for all His bounty. I will put my hope in His redeeming ways, in the mystery of the ugly-beautiful. I lay flat at His feet and ask simply, Father, do not abandon me. Be faithful to your promises. May your mercies be new every morning.
“The wrinkled man in the wheelchair with the legs wrapped, the girl with her face punctured deep with the teeth marks of a dog, the mess of the world, and I see – this, all this, is what the French call d’un beau affreux, what the Germans call hubsch-hasslich – the ugly-beautiful. That which is perceived as ugly transfigures into beautiful. What the postimpressionist painter Paul Gauguin expressed as ‘Le laid peut etre beau’ – The ugly can be beautiful. The dark can give birth to life; suffering can deliver grace.” Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You Are
Oh Jai….my heart just breaks for you. What a shock for you to hear that the door was shut. I’m praying that her numbers rise and they reconsider. Lord Jesus come near with your comforting presense. Make yourself so real to this precious family. We love you guys!!
Jai, I’m praying for you all-God hears-
In my alarm I said, “I am cut off from your sight!” Yet you heard my cry for mercy when I called to you for help. Psalm 31:22
Signe and her family are thinking of all of you. XO
Praying for you guys, often! Thank you for sharing your heart and always lifting me eyes to the Lord with your words. I’ve never even met you, but reading your posts…..the Lord has used them tremendously in my life when trials come. Thank you.
Prayers, prayers, prayers…..
I was so hoping to read wonderful news. I have a hatred of the IRB. When working at a Research Clinic for IVF, we could never get anything approved unless we submitted it just so. They had a gate keeper for the board that pretty much kept our more extreme trials out (they just happened to not make it to the board that week, or we didn’t do something that didn’t even effect the integrity of the study.) She was awful and seemed to be on a power trip every time I went to submit. I hope beyond hope that your IRB, can see the human, the little girl beyond the paper.
What Amanda said. I hope they see the girl behind the data and that they find their humanity. I’ll be praying for an opened door next week. Love and hugs.
The Sovereign God Most High is clearly at work…and I am praying with lovinglovia that the IRB will SEE ALLISTAIRE the way JESUS sees her! YES! AS JESUS sees her! And that The Holy Spirit will “El GaBONG” them into reason and HOPE….HOPE!.. despite All crazy rational human reasoning….HE is BEYOND that! Whatever occurs, HE will be GLORIFIED!
Take Heart, Jai….Whatever, whatever HE is up to….HE draws us to HOPE! HE is HOPE!
And the Shunammite woman defies all rules and logistics when she CHARGES Elisha and declares,
“Didn’t I tell you…DON’T RAISE MY HOPES!!?!!
DON’T RAISE OUR HOPES LORD….please be Gentle.
Jai, your authenticity and vulnerability lead us all to JESUS…You gift us in this time of turmoil.
I rail with you…but I bow with you as well, my sister.
Come LORD JESUS!!! Thou art a SHEILD about us, our Glory and the LIFTER of our Heads!
We cry aloud to the Lord…and HE answers us from HIS HOLY HILL!!!!
Praise The KING!
Sweet girls – and I wrestle on your behalf, with that infinite Other, and I understand the mercy of death even as I know some of its horrors and want your children to live to see YOU pass into eternity, old and gray… and Solveig’s kissing the fish made me smile and say, “EW!” and Allistaire’s sweet pixie with the headbands (I need to steal that idea myself) melted my heart. And those days. All those days in treatment. I superimposed my children’s faces onto her sleeping one, tried to enter your world for a moment, ached. I love you, Jai. I love Sten (though we’ve not met), and Solveig and Allistaire and the fringe family that surround you all. And I’m wondering what God will do. As Job said, “Though He slay me, yet will I trust Him.”
Continuing to pray with and for you… What an exhausting roller coaster it’s been for you guys!!!! Much love to you, Allistaire, and your whole family.
There are no adequate words to share with you. I send my prayers to God for each of you during this exhausting, emotional time!