I know I should go to bed but I know that when I do, tomorrow will hasten its coming. So fast it will fly and then we will have arrived on the threshold of that day we must enter the hospital. I strain to slow my steps as though I can with force of will prevent the series of events which will come, which must come to bring us to Wednesday morning. The halls are bright with light and the colors, blue, orange, green are meant to be cheery, modern. But to a prison cell it feels we are being sent. And the dread is not because of the annoyance of people perpetually coming and going or the fact that we are closed into a tiny space where no normal advances of life can take place, where we are stunted in 4 hour cycles of vitals. No, that is endurable, that is bearable. The dread, though weighty, sinks slow and silent, settling firmly in my heart, in my gut. Will she ever leave again? Will the sweet small child who walks through those doors ever, ever return? I KNOW what happens in that place. I know what terrors lurk. I feel as though I’m walking my child to the gallows. I’m doing this, in her innocence, I lead her into that place. But I have no other choice. I must hand her over. It’s breaking my heart to know what will soon be done to her, again. How can she endure? She is so small. And she must do it all over again for a second time. My heart tears with screams – how can I be forced to choose between these poisons and destroyers of chemotherapy and radiation, and her death? Neither are good! I despise being crammed in this wretched crack of murderous choices.
But I yield. I take her by her small, warm hand and I will lead her in. It does not take long in the fight against cancer to know so clearly how each step forward is gift, pure, free, underserved, gift. For you see those falling away around you and you know how very fortunate you are. The sun has shone upon you, you are the blessed and you have absolutely no room to grumble or complain – for you still stand. I don’t know what the days ahead may hold. I don’t know how long we will be locked in that place or if ever, ever my beloved Allistaire will come out, marred, but alive and radiant.
This morning we went to clinic and Allistaire had labs drawn, then we saw the nurse practitioner. At the end of the appointment we had the joy of having Dr. Gardner come by as well. She was able to relay the discussion regarding Allistaire that the Hem/Onc and transplant doctors had this past Thursday. They agreed to prioritize a clinical trial transplant whose aim is to reduce Graft Versus Host Disease (GVHD). Based on Allistaire’s HLA (Human Leukocyte Antigen) typing, they are optimistic that they will be able to find a 10 out of 10 matched, unrelated donor that will fulfill the protocol’s requirements. The trial is testing the efficacy of removing “naive T cells” from the donor cells and returning the remaining cells to the patient, leaving the memory T cells. For those new to bone marrow transplants, the idea is not only that you myeloblate (utterly destroy) the patient’s marrow in the hope that you also destroy the cancerous cells, but that the real beauty of transplant is mythical GVL (Graft Versus Leukemia). When you receive the infusion of the new donor cells, these cells enter the patient’s body and sees their body as foreign. The immune system is created to search out and destroy what is foreign and unwelcome. This means that both healthy and cancerous cells may be attacked. The attach of healthy cells is known as GVHD and the attack against cancerous cells in the case of leukemia is known as GVL. So this transplant is designed to remove the T cells that indiscriminately destroy and leave the rest. While I love the thought of less GVHD, I asked Dr. Gardner with concern, whether or not such a transplant would produce diminished GVL. With a smile, she said, no, they don’t think so, they have had very promising results.
Another upside of this transplant, is that with diminished risk of GVHD, there is a greater likelihood that Allistaire would be in a better position to receive the infusion of the modified TCRs (T cell Receptor). When you have GVHD, one may need to go on immune suppressants, often steroids, to reduce the immune response of the T cells. The most common places under attack are the skin, liver and gut. It would make no sense for Allistaire to receive fancy, modified T cells only to suppress them with steroids, rendering them ineffective.
Perhaps the greatest ray of hope, came with the words, “transplant without remission.” It sounds like the transplant doctors are still willing to go ahead with this transplant, even if Allistaire is not in remission. To qualify for the trial, Allistaire would have to have 10,000 or less circulating peripheral blasts, a 10 out of 10 matched, unrelated donor, and generally be in good condition (organs functioning well, no out of control infection, etc.). Dr. Bleakley, the principal investigator for the trial at Fred Hutch, does not view Allistaire’s chloromas (solid leukemia outside of marrow), as disqualifiers. Of course it would still be optimal for these spots to be gone or substantially so, but their presence would not close the door for her. It may mean, however, that she would need focalized radiation to these locations in addition to TBI (Total Body Irradiation).
Suddenly, the yellow walls of the room felt fitting for the hope swelling in my chest. There may be a way through. There is a ray of hope. That is what I needed to face an indefinite inpatient stay. Knowing there is hope, spurs one onto fight. Before this conversation with Dr. Gardner, it just seemed like this was all doomed to fail which made it all the harder to willingly walk into that lock-down prison. Good fortune continued with Allistaire drawing her first person and getting bumped up in the schedule for her “back poke,” where they test her spinal fluid for leukemia and inject a chemo, cytarabine.
Allistaire had just been wheeled into the recovery room where they practically kick you out 5 minutes after a procedure, when our nurse practitioner walked in with the lab results. In the appointment we’d had everything back with the exception of the ANC (Absolute Neutrophil Count) which always takes longer. All her labs had looked great, despite her falling blood counts which are naturally to be expected because of the advance of her leukemia and the chemotherapy. The ANC was fine, 1022.
The absolute smack in the face was the presence of an Absolute Blast Count – 68. Blasts are immature cells and they can be completely normal depending on their location and number. Blasts in the peripheral blood, and of more than just a few, are most likely leukemic. There was that wretched number declaring the very real increase of her cancer, such that it has pushed out cancer cells into the bloodstream, and this, even in the face of seven days of chemo. Now, Decitabine is not a hard-core chemo, is known to take a while to be effective and is not what we are relying on to get her cancer into remission. Yet, it makes you want to throw up on the spot. Blasts are the harbinger of things grossly out of control in the marrow. Their presence stings and burns the mind. Blasts were the evidence that every round of chemo prior to her first transplant had failed. It is not an overstatement to say that they strike terror.
All the hope I had known in that yellow room thirty minutes before, seemed to have been violently suctioned away. I felt panic and desperate need to talk to Dr. Gardner about this most wretched development. She appeared shortly and said in short, “I don’t want to blow it off, but it does not add to my level of concern. It does not surprise me and it doesn’t change our plan.” She affirmed all of my assertions regarding Decitabine that I had quickly thrown together in my mind. Well, I would have felt a lot more free-spirited joy had those blasts never shown their ugly faces, but all hope is not lost.
For now it is late, but I have one last morning to sleep in and snuggle with my girl, just the two of us. No lights, no pumps or beeping sounds, no interruptions for vitals. One more morning and day of seeming normalcy.
For more information on the transplant trial, click the link below. The trial for the modified TCRs is below that.
Selective Depletion of CD45RA+T Cells From Allogeneic Peripheral Blood Stem Cell Grafts for the Prevention of GVHD
Laboratory-Treated T Cells in Treating Patients With High-Risk Relapsed Acute Myeloid Leukemia, Myelodysplastic Syndrome, or Chronic Myelogenous Leukemia Previously Treated With Donor Stem Cell Transplant
Explanation of TCRs from the Juno Therapeutics Website
Jai, I was up late working when your blog post came through. I had just been praying for you and your sweet family as I worked. Thanks for continuing to give updates. I will continue to pray that God will give you strength and that He continues to provide hope. I don’t comment often…but know I read each blog and faithfully pray for you.
Tami (Titus) Fauth
Jai,thank you for your updates. Words fail me, I am so saddened by Allistaire’s illness and wish so much for her to be healed! Prayers for healing and strength will continue……I haven’t commented before….just kept in touch with your mom….but I do read and appreciate your blogs..Sue (Curlee)Neal
I’ve been following sweet, beautiful Allistaire’s story for a while since my neighbor posted about it on Facebook. It’s so hard to find the wordsto say how much her (and your) story has affected me. It breaks my heart that she has to go through this all over again and the only thing I can really do is pray. For her, for you, for your lovely Solveig and your husband, for strength, for courage, for comfort, for hope. Soldier on, Allistaire!
Praying. Praying. Praying.
Jai and Allistaire,
I have never met you and I do not even remember how I started following your blog sometime last year but ever since I did, I have prayed for Allistaire and you are so often on my mind. She is a beautiful, precious little girl and your faith astounds me. Please know that I am fervently praying for all 4 of you.
Hope brings life. I am grateful to hear that there are options and possibilities. Christ is our hope and I will continue to pray that he brightens the dark moments with His light.
Sending you and yours love and hope.
Praying for you and yours this am
Sending this with ((((((HUGS))))) from GOD & me as you journey into this day. I had just 🙏ed for you and your family then read this ….kinda how I had prayed for you😍 GOD’S LO❤️E & mine
Sent from my iPad
Love to you! Keep sharing the light that Christ shines even in the darkness… We are hoping and praying with you.
Jai praying for you and Allistaire has you begin yet another stay in the hospital. With God’s help you will get through this and with the doctors help they will be able to help your daughter come through this with flying colors.
I don’t know you or your family (we have mutual friends as I went to the Master’s College) but my heart and prayers go out to you so much. I’m in tears seeing your adorable little girl with the same well-loved puppy that my son sleeps with every night. As a mother to a mother, I am praying that God will be merciful and gracious to your family in every way but especially by healing your beautiful, sweet little girl. May the peace of God, which surpasses all understanding, guard your hearts and your minds as you trust in Christ Jesus.
I’m so sorry, Jai. It doesn’t seem fair. Maybe it’s wrong or silly, but I sometimes wonder why some fair better than others. Those pics bring back a flood of emotions, I can still smell the smells, hear the sounds, and remember the fears of the unknown future. My prayers go out for you and your precious family.