Tag Archives: modified T-cells

May31

Jail Break

Posted on May 31, 2015 by Conglomeration of Joy

I used to think I was safe, that wild animals, the beasts, the possibility of having my flesh torn off of bones, lay up there, out there, far off in dark mountainous woods. I thought it would be easy to simply steer clear of such terrors. As though somehow my own willing of my footsteps could keep me from entering their realm, that by hope, optimism, some silly assumption of impenetrability, it would not be so hard to keep those ravages at bay. I walked in a sunlit land, blithely believing, perhaps not even believing but never even thinking that they might tear down the hillside at terrifying speeds, absolutely bent on destruction. They do not see a heart full of hopes, of dreams, of ideas, of lists of yearnings, eyes bright. Their horrible feet carry them, saliva flinging back behind as their daggers flash, crazed eyes.

Flood waters tearing homes in half, separating husband and wife with children. Father of Solveig’s classmate, life cut short from heart attack. Jens on a mountainside. Nine year old girls sold into slavery by Isis. Kassidae home from yet another T-cell trial that utterly failed to stop her cancer.

What is it like to have no more options? How can I fathom a journey where suddenly the road simply ends. No destination reached, just a faint trail blending into nothing, melding into the landscape. And then what? And then what? Where does one go from there?

I see a small child standing alone in an open space. Nothing in their hands. No clothes. No defense. Utterly vulnerable. I stand and watch, unable to move, unable to raise my hand to stop what I know will come, what is coming.

The child shivers, confusion in their eyes. And then you sense it, before even sound reaches your ears. Some sort of terrible rushing, some silent invisible foe rushing through the forest. At last it breaks through the trees, snarling, feet hardly touching the ground as it bolts for your child, savage mouth wide. And do you turn away? Can you stand to watch the beast tear into your child’s flesh? Dare you know the moment their life is extinguished? How much will be ripped and torn before their eyes go limp and lifeless?

I heard these words in a beautiful song, a song meant to comfort, a lullaby.

“Quiet your heart
It’s just a dream
Go back to sleep

I’ll be right here
I’ll stay awake as long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe

You’ll have your own battles to fight
When you are older
You’ll find yourself frozen inside
But always remember

If you feel alone
Facing the giants
And you don’t know
What to do

My love is a light
Driving away all of your fear
So don’t be afraid
Remember I made a promise to keep you safe”

My heart was breaking as I listened to these words. Hot silent tears slid down as I drove, facing forward, intent on the task of getting there. “You’ll have your own battles to fight when you’re older.” But no, no, Allistaire did not get to be older before she had her own battles to fight. She was just 21 months old when her battle against this ravaging beast first came, intent on taking her life.

“Mommy, I like that part, ‘you feel alone, facing the giants, and you don’t know what to do.” Her soft sweet voice came to me from the back seat. Of all the words in all the songs, these are the one’s she speaks out loud, repeats back to me, the words that most resonated with her little girl heart.

You think, unconsciously believe, that as a parent you can protect your child, that somehow, by force of will you can magically keep them from harm. Surely there is nothing more core to being a parent, to being a mother, than protecting the life of your child.

But my love, oh my love, so fierce, stuffed full with all my might and zeal, my hope…it is powerless to protect against some enemies. I never made that promise to keep her safe, I just assumed it would be true. Of course she will be safe. Of course I can wrap her up in a hug and overcome any giant.

No. There may come a time where there are no options left and I will hear the rushing of wind through branches as that beast comes tearing through the forest, breaks out into the opening and sinks its wretched brutal teeth into the one I love, this time sparing nothing. I may be left with my heart bleeding out in the open space, tattered, wounded, ravaged child in my lap, never again to see her bright eyes, never again to hear the most beloved sound on the whole earth, her laugh, her voice full of wonder.

But I know this. She will not stand alone. If such a time comes, I will stand with her, hand gripped in mine and I will face that beast with her. I will not turn away and I will not leave her, and that may be all that I can do. My eyes will weep until my own flesh is laid to rest.

To Shannon, to Kate, to Susan, to Becca, to Rachel, to Julie, to Beth, to Devon, to you many more mothers who have walked this road, who stood with your hand gripping your child’s as that beast came to devour, my heart weeps with yours and oh how I desperately long for a better day.

For those of you who know that Allistaire was discharged from the hospital almost two weeks ago, these words must come as a surprise. What you see on the surface is so far from the full story. People constantly comment, “She looks great!” They ask, “How is she doing?” How do I answer that question? On Monday at the playground, after having climbed up the slide twice in a row, Allistaire suddenly said she didn’t feel well, she was panicked and in pain but couldn’t explain what was really happening. There was terror in her eyes. I cradled her and hoped she would calm down. Maybe she just overexerted herself a little. She cried out in anguish, “Mommy,” over and over, yet I could not understand the source of her pain or her fear. I asked my five-year old daughter, “Do I need to take you to the hospital?” as though she could answer this question. Was she overreacting? What was she feeling? She threw up in the bathroom. Well, she was on day 6 of chemo and this was the first time she threw up, so really not concerning in itself. Of course nausea can be a sign of heart failure too. I scan through all I know in my head, assessing her energy, her sleep patterns, her appetite, food consumption. Could it be her heart? She continued to freak out after throwing up and we left the bathroom. “Mommy, can I feel the sand?” I took off her sandals and gently sat her feet down in the sand at Golden Gardens. Immediately she calmed. Immediately she was fine. What was real? What is true? How much of that was based on something of significance? How much is her just working herself up? I dreaded having to relay this incident to the cardiologists. It’s a lovely day at the park, but just below the surface are constant swirling realities that threaten to steal it all away.

In the first days of being out of the hospital, Allistaire and I gorged on our sudden freedom, on sunlight and bird song and starlight and bright moon, on playgrounds and sleeping without interruption, on hours of daytime without nurses and doctors and hospital food trays. Solveig and JoMarie arrived last Wednesday evening and my heart swelled with the joy of their laughter and heads clustered together in play. Everyday playgrounds, picnics and beaches, throwing rocks into water and sun glinting off lapping waves. Caterpillars on fingers and squealing. My faced beamed with delight, with wonder at simple ordinary life. How much more wondrous it is than people realize!

You think that leaving the hospital is some signal of victory, of progress, of normalcy. And so it may be, often is, though not always. We left on May 18th, not having accomplished what we came to do. In some ways the girl who left the hospital was worse off then the girl who came to Seattle back in October. The great victory was that she successfully weaned off Milrinone. A huge accomplishment which has made way for a few options, far more than none. But her heart is far too weak to endure a standard transplant for AML which includes TBI (Total Body Irradiation). So we left the confines of this hospital after 130 straight days, her only moments outside were the 30 seconds here and there strapped onto an ambulance stretcher as she was transported to and from The University of Washington for radiation. We went straight to the playground.

For 11 of the past 12 days since she was discharged, Allistaire has been to the hospital for a variety of appointments. On Tuesday the 19th she finished focal radiation to her left leg where one new chloroma (solid leukemia) showed up on her last PET/CT scan. On Wednesday she saw Dr. Todd Cooper, her new primary oncologist. Dr. Gardner is pregnant with twin girls and so we are making the transition to having Dr. Cooper, who is the newly hired head of the leukemia department and an AML expert. He is the doctor that Dr. Pollard had hoped would come to Seattle Children’s. He has been tasked with developing a High-Risk Leukemia program for Seattle Children’s. So when Dr. Gardner asked who I’d like to have as Allistaire’s new primary oncologist, it was a no-brainer to ask for Dr. Cooper, a kind man from Atlanta who is a super smarty pants AML doc. In our first outpatient visit with him, he relayed that Dr. Pollard had called him about Allistaire to make sure he was up to speed with all the details of her medical history. I cannot tell you how amazingly cared for I feel here at Seattle Children’s. We are blessed beyond words by the team that journey’s with us. After seeing Dr. Cooper, Allistaire began seven days of Azacitadine, the same chemo she got last time.

Prior to leaving the hospital, I met with Dr. Gardner and Dr. Marie Bleakley, the transplant doctor we’ve worked with at several significant points. It was really great to have them both present for the conversation. Dr. Gardner began with explaining her reasoning for waiting so long for Allistaire to begin chemo again. I had grown frightened with the incredible amount of time since her last round of chemo, knowing the immense need to keep her in remission and being aware that she was a month beyond the traditional time of starting a new round. Dr. Gardner stressed that because Allistaire’s marrow has been so incredibly slow to recover, her greatest immediate risk is that of an infection that one: she wouldn’t have the white blood cell defenses to fight and two: that could overwhelm her heart. So finally, nine weeks after the beginning of the previous round of Azacitidine, Allistaire would begin another round. She also stated again that given Allistaire’s heart, TBI, known to have long-term consequences to the heart, was not in her best interest at this time. Dr. Bleakley went on to describe a “midi-transplant” which has much lower levels of radiation (4 centigray as opposed to 12 in TBI) and heavy-duty myeloablative chemotherapy, and a “mini-transplant” with even lower levels of radiation (2 centigray) and non-myeloablative chemotherapy but high-dose steroids. I’ll forego going into the details of how each of these work and the pros and cons, but suffice it to say, the mini-transplant is not a good option as it is intended to extend life in the old who cannot endure hard-core conditioning. It is unlikely to provide a cure and has a lot of potential for GVHD (Graft Versus Host Disease). So while the “midi-transplant” is an option for Allistaire, with a gleam in her eye, Dr. Bleakley had a different proposal.

I left the room with hope. With fear yes, always there is fear, we walk ever into black, into unknown. But with hope, with a bit of upturned grin. Dr. Bleakley has proposed that Allistaire’s best option is to participate in the WT1 trial. This is a trial through Fred Hutchinson Cancer Research and uses genetically modified T-cells which have a specially designed receptor to bind to the WT1 protein found on 90% of leukemia patients cancer cells. Normally a bone marrow test would be done to confirm expression of the WT1 protein in the cancer cells, because if it is not present, the receptor is useless. However, because Allistaire has not had any detectable disease in her marrow since she relapsed in October, they decided to proceed without this info for now. At the end of this round of chemo, she will have another bone marrow test performed and if there is disease, they can then test for the WT1 protein.

So far 17 people have participated in this trial. Of the people who were in remission going into a bone marrow transplant and remained in remission leading up to getting the modified T-cells, 100% have remained in remission for over a year that they have been followed so far, this in light of a normally high relapse rate post-transplant. There are two people who relapsed after transplant and then got back into remission and then received the modified T-cells. This is the arm of the protocol that Allistaire would fall into. I believe I was told these people are also remaining in remission. The remaining group relapsed after transplant and did not get back into remission and despite having the T-cells are not doing well or have already died. It seems the T-cells work best when there is little to no detectable disease. We will know the state of Allistaire’s disease after we get results from her next set of tests around June 16th. How I pray she remains in remission, but she has been receiving very mild chemo and has gone great lengths of time with little to no defense.

What makes Allistaire unique in this trial, is that, should she be able to get these TCR T-cells, she will be the very first child to do so. I will have to ask again if this is being done anywhere else, but she is certainly the first child ever to have this sort of therapy here (Seattle Children’s/Fred Hutch). There are many kids with ALL (Acute Lymphoblastic Leukemia) who have by now received modified T-cell therapy. But the targets are quite different. In Lymphoblastic leukemia, the cancer is in the B-cell line and CAR (Chimeric Antigen Receptor) therapy is used to destroy the cancer and in doing so, it forever destroys the patients’ B-cell line, requiring life-long transfusions of Immunoglobulin. The first child ever to receive this therapy was a little girl named Emma in April 2012 at CHOP (Children’s Hospital of Philadelphia). She has remained in complete remission since then. Seattle Children’s Research along with the Ben Towne Foundation has provided this therapy to a growing number of children with great success. People are coming from around the world for this treatment. A month ago I met a woman named Solveig from Germany who was here with her son, Nicolas, who was getting CAR-19 T-cell therapy. Allistaire’s cancer (Acute Myeloid Leukemia) is found on the myeloid line – cells that you cannot forever destroy and rely on transfusions for, cells like red blood cells, platelets and granulocytes. Thus the scientists have needed to find another way to attack these cells.

The folks at Fred Hutch have been incredible. I am amazed, honored and humbled by their passionate desire to make a way for Allistaire to participate in this trial. Through conversations with Dr. Bleakley, Dr. Dan Egan (the principal investigator on the trial) and Dr. Phil Greenberg (the head of the lab who has designed this therapy), it is so abundantly evident that they see Allistaire as an individual and they see her as the child that represents the children who are also in desperate need of this therapy, children who have run out of options, children “destined to die of their disease.” They have re-written the protocol to accommodate her, to make way for future children. The original weight requirement was 30kg because of the numerous blood draws required for testing. They worked it out to reduce the limit to 15kg, Allistaire was 17kg at the time they made this change. Additionally, because this weight change equals treating much younger patients, they went through a lengthy, involved process to set up approval to give this therapy at Seattle Children’s. Up to this point, the youngest patients have been in their teens and were treated at The University of Washington where adults are treated. They have worked hard to make a way through for my girl.

On Sunday evening, May 17th, I was delightfully honored to be invited by Julie Guillot to the Premier Chef’s Dinner, a fundraiser for Fred Hutch. As I have mentioned before, Julie and her husband, Jeff, lost their son Zach to a complication of his third transplant for AML. At that time they were helping fund the research that would create T-cells that would give Zach another measure of defense against AML. When Zach died in February 2014, Julie’s zeal and wild fiery passion to bring an end to AML and better treatment options, only intensified. When Allistaire relapsed in October 2014, she invited Allistaire and I to a little party for Dr. Greenberg’s lab to celebrate the $1.7 million dollars Julie and Jeff had helped raise for his research thus far. It was at that time I first met Dr. Greenberg in person and introduced he and his lab staff to Allistaire. Jeff and Julie were the challenge fundraisers for the fundraiser on May 17, 2015, having pledged to match up to $400,000 of money raised that evening. In making this commitment, they were given the privilege to direct where the funds would go. Their whole motivation was to see the immunotherapy through Dr. Greenberg’s lab flourish and accelerate. By the end of the amazing evening, $1,280,000 was raised to accelerate targeted cellular immunotherapy research at Fred Hutch. I had the joy of standing up and representing the hopeful first child to benefit from his research. Dr. Greenberg spoke to me on two different occasions during the evening, each time with multiple hugs initiated by him. You could see the eager joy and hope in his eyes. It was a wondrous thing to stand alongside a man who has dedicated several decades of his life to this research, generous donors, a fellow cancer mom who lost her son – for whom this therapy is coming too late, and I, the mom of a child who is desperate now and who needs this treatment immediately. The full circle was there – scientist, patients, donors.

Doors are opening but still the tension remains high-pitched. There is the illusion of normalcy, there is light-hearted laughter on the surface, but there is a mighty undercurrent, ever threatening to pull Allistaire down, deep into the suffocating dark. First financial approval for the trial was required which was confirmed by Blue Cross Blue Shield of Montana this Wednesday. This allowed the Unrelated Donor Search Committee to initiate their part which is to request Allistaire’s original donor to be contacted and for a request for consent to use remaining donated cells for this trial. At this point, unlike the CAR t-cell trials, the WT1 trial must use bone marrow transplant donor cells. While Allistaire is not in a position to get a transplant at this time, she thankfully does have cells stored at Fred Hutch from her original donor from her transplant in June 2013. Extra cells are stored for two years at no charge and then you have the option to pay to have them stored. This June 18th, will mark two years. I pray this woman can be found quickly, quickly and that her heart will be moved again to give, this time solely of her consent. It feels sort of terrifying to know that Allistaire’s one shot is dependent on a woman on the other side of the world, but then again, she gave once in a much greater way, we so hope she will help make a way through for Allistaire again. If we can gain her consent, processing of the cells will begin and takes approximately a month and a half. Speed is of essence. The T-cell therapy much be coordinated with Allistaire’s chemo schedule. It is my great hope that there may be a way for Allistaire to get these cells prior to needing to begin another round of chemo.

This therapy could be Allistaire’s cure. That would be BEYOND AMAZING!!!! And if not a cure, we pray the T-cells will buy her more time, time for her heart to heal, time for her heart to gain strength to enter the next battle of a second transplant. What’s so wild to me is that Allistaire would be inpatient for ONE day for this therapy. ONE DAY!!!! And this T-cell therapy does not result in the intense cytokine storm response as it does in the CAR T-cell therapy which puts most kids in the ICU for some period of time. No one in the WT1 trial has had to go to the ICU. In fact, Dr. Gardner told me that Allistaire would not be able be eligible for the CAR t-cell therapy because of the extreme dangers it can pose. For the WT1 trial, they would ask her to stick around for a few weeks for some blood draws and observation and then remaining blood tests could be done at home and simply mailed over to Fred Hutch. It all seems too good to be true. What a wondrous world it will be when this is the way cancer treatment is conducted. Can you even imagine?! I must highly, highly recommend the documentary, “The Emperor of All Maladies,” by Ken Burns! It is based on the book of the same name which is also extremely fascinating and worth reading. It is simply thrilling to see how far cancer research and treatment has come and the heightened hope that immunotherapy will change the course of how cancer impacts our lives – for one in every two men and one in every three women who will get cancer at least once in their lives.

I am weary, so utterly weary. But what choice do we have but to walk on? And we do. We walk forward, giving thanks for so much blessing. Sometimes it feels like there being a way through for her is an utter impossibility, but then I am reminded of how many “impossibilities” have come to pass, how the insurmountable has been overcome. My yearning for her life is like a burning fever that never lets up. Every moment is on high-alert, racing through the myriad of questions to try to determine how she is doing, to assess what is going on for her. There are now so many interwoven layers of medical complexity and reality. There is cancer, there is heart failure, there are medications (13 different ones every day – 26 doses), there is being deconditioned by months lived in the cramped confines of the hospital. I see her on the play ground and I watch kids younger than her charge a hill or climb with confidence. She tires quickly, she is fearful. Her legs hurt. Is it cancer on the move? Is it lack of blood getting to muscles? Is it simple fatigue brought on my muscles that have not been asked to do much in so, so long? Is she nauseous? Is it from chemo? Is it from the magnesium she must take because her Lasix makes her waste it, magnesium that causes tumultuous abdominal cramping? All her pain signals are mixed up so that she just finds herself in a frenzy of discomfort, in a frightful maze desperate to get out but with no clear direction.

Leaving the hospital balloons the craving for normal, it makes you think you should be normal, all the standards shift and you see your child not as one among the many other sick kids but among the normal. At the same moment that I am delighting in the warm day and Allistaire playing in the sand, going back to the lake shore to fill her bucket again, I am aware of the dangers in that sand, in that water. I’ve put parafilm on the end of her tubies and tucked them tight into her swim suit. She wears her sun hat and is lathered in sunscreen. Her medications make her more sensitive to the sun, more likely to burn. I’d like to avoid skin cancer. She doesn’t know what to do when the other little girl approaches silently to play with her and share her toys. She is fearful and defensive. My heart sighs knowing how little interaction she’s had with other children, how to navigate such situations. In her cardiology appointment the great nurse, Jason, calls her precocious. Yes, yes, she seems to be quite articulate for a five-year old. There are ways that her deficits are glaring and there are odd ways that she has walked so much further in life than the vast majority of five-year olds. What I know is that I love her dearly, I long to keep her safe, to see her have long life.

I pray to God, I seek to be reminded, imbedded in the truth of His infiniteness. I ask Him to remember that I am finite. I ask Christ to pray for me as He prayed for Peter, that my faith would not fail (Luke 22:31-32). I ask Him to help me to lift my eyes, to take in the long view, to help me in this brutal moment, these series of endless days, in this tedious fight against cancer, in this relentless tumult to see His face throughout all these circumstances. We go to the playground. We look for the first stars at night, our necks craning back. Alllistaire points eagerly at the moon, not framed in the hospital window, but in the vast expanse of the evening sky. We listen for birds and bend our noses to flowers. Our feet follow little paths through marsh land and cat tails, spider webs bright in the afternoon sun. We live, we delight. We go to the hospital again and again into little rooms with blood pressure cuffs and vials of blood that tell of the world within which eyes cannot see. We walk forward through this intertwined life, messy, unclear, wondrous, of such enormous precious value. We give thanks to the Lord and ask for more.

Lyrics above are from J.J. Heller’s song, “Keep You Safe.”

Feb27

Bewilder

Posted on February 27, 2015 by Conglomeration of Joy

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Bewilder. Is that the right word? I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching? I am out here, cast in the land between lands, this already and not yet, ever tension. But she is so alive?! “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?” All heads nod.

I didn’t want to cry. I didn’t want to have my heart tearing out of me be seen as with audience by these eight. I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting. I studied the tree tops beyond those panes of glass, never seeing them. “Her heart could suddenly stop. She could have an arrhythmia.” Gutteral cry, “Oh God.” It was not hard for the images of doctors swarming her to come vivid. Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location. “Code Blue Ocean 8 in front of the lab.” “Code Blue River 5 room 307.” I have seen the flood of doctors and nurses responding like blood gushing a wound. Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl. I know if it came to this it would be the end. While they might be able to bring her temporarily back, there would ultimately be no return, no recovery. But yes, yes, yes try to bring her back because I want to gather those who have so cherished her. I want that time to surround her with faces who hold her dear. I want that chance to say good-bye one last time. I want to blow her kisses. I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all. At some point in the future, they will try to wean her off the Milrinone. Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function. So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience. If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her. It would foretell the end. If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time. It will take time. The question is whether or not her cancer will allow such time. As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow. The extremely poor condition of her heart continues to make sedation unnecessarily risky. The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image. She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that. Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image. The advantage of the PET scan is that it shows the active metabolic cancer. Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough. For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry. While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission. I can’t imagine doing nothing further. So once her ANC reaches 1,000 she will begin getting Azacitidine. Today her ANC is 348. Neither Clofarabine or Decitabine are options because they suppress blood counts too much. At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge. She has no reserve. The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant. Another upside is that it can be given outpatient. If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective. However, radiation is given under sedation for someone as young as Allistaire. You must lay completely still in the exact position they place you in. Radiation is incredibly precisely targeted. A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation. Allistaire would be left totally alone in that room with the foot thick lead door. I really don’t know if she could do it. If Allistaire is not in remission, every single thing changes. If she is not in remission, she is done, done. There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial) This trial requires that Allistaire’s ejection fraction be 35 or higher. Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial. The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell. Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs. The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices. My face lit up with possibility and terror at such a possibility, such an extreme measure. It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover. I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire. Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon. The short of it is that a VAD is not an option for Allistaire. You cannot go through a bone marrow transplant with a VAD. The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy. The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD. In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured. It has been compensating a very long time and likely cannot bounce back. A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for. The thought of a heart transplant is insane to me, insane. But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ. The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years. That sounds like a long time. But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart. Yesterday the cardiologists wanted an X-ray of her lungs to look for edema. They put the little lead heart on her groin again and it was like a knife twisting in me. In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!” I’ve already yielded her ovaries. I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities. I know her growth and bones have already been harmed. She has already lost so many days as a child, and now her heart too will be gouged out? It is like cutting off someone’s leg and saying, be happy, you still have one leg. And then, oh wait, we must cut off that other leg and an arm. Limbless, you are thankful to be alive. But you have been harmed you see? You have been ravaged. The exchange for your life has cost so very much. But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road. “I don’t know how to do this,” my voice bleak. “No one knows how to do this,” he told me. It is not natural that a child should die before their parent. While it happens often enough, it is not the natural order. He was very gracious toward us. I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options. Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day. That is all I could possibly ask for. I just need to know that she is being fought for, that she is not being given up. And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on. It is not yet time to lay down and rest. We press on, we endure. We put our face to the wind and cry out in anguish and fierce determination. There may be a way through, there may. There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers. I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours. Thank you. Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ. Thank you for sharing our burden. Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice! For we are calling out to you Oh GOD! We do not understand your ways. What you are doing is here is so unclear, it seems so dreadfully wrong. How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god. I will stand in worship, though the fire consume me. Am I fool? Many will nod, yes. But you see, I have seen the Lord. I have heard His voice. I choose to turn my face to Him. I will again fix my eyes on Him. I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me. For the joy that will come, but the joy too that is, that is in this present time. I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days. I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence. It is not about manners, it is about love, love. I seek to love. I seek to love Allistaire. I seek to love Sten and Solveig. I seek to love each nurse, doctor and person that I encounter. For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research. Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way. If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire. The details can be found HERE on Facebook. The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday. Please do not send any birthday gifts. The truth is, she has enough in the way of toys and such. If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl. Prayer is not some magic equation where enough prayers by enough people yields the desired result. Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

Feb3

Numbers

Posted on February 3, 2015 by Conglomeration of Joy

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This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead. I am daunted by the incredible number of details that all have to fall in place. It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails. They may open. They probably will. Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us. The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut. A few comments in recent days have opened my eyes to just how serious her typhlitis was. On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice. When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery. I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in. When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen. She sure did a good job of not letting on about how precarious her condition was. Apparently, had her bowel perforated, a likely uncontrollable infection would ensue. This is in fact how my grandmother, Lillian, died. She died fast. I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died. I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine. Thank you Father that you preserved her life. Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes. Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart. Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for. Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid. They are doing everything in their ability to ease the burden on her heart. As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.” She has continued on Milrinone. Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning. A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it. Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect. “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing. We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach. It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN. It is very possible she will get a feeding tube given how small her stomach will have shrunk. The feeding tube would allow constant low level food. This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed. Oh well, something else new to learn. Her blood counts remain in decline. Today she is getting platelets (which she seems to need every 2-3 days) and red blood. Her white blood count remains zero. Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again. I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed. Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th. I will have an Arrival Conference, the next day on the 18th. The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant. She will likely have a bone marrow test February 19th or 20th. Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th. Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th. This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away. She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa. There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away. This whole process is taking a month longer than I had ideally hoped. Yet this may be for the best as it gives Allistaire lots of time to recover. Her heart, marrow and gut have been severely injured. This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad. The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week. This time will also allow for finalizing details of payment for transplant. Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them. It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials. This boggles my mind. Her last transplant cost $1.1 million. Sometimes I shudder at what Allistaire’s care has cost. I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries. It is not fair that so much is given to her. The Super Bowl helped add a little perspective. Thirty seconds of Super Bowl advertisement time costs four million dollars. That’s about what it has cost to keep Allistaire alive the last 3 years. She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time. What a world.

Another steel gate is in the hands of the donor herself. She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant. She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents. There is not one single thing in the universe I can do to impact her decision. In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing. So many gates barring the road before us. Most of this post was written yesterday morning long before results from Allistaire’s echo came in. The day ebbed by at a painfully slow pace. I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart. Yesterday the weight of sadness lay heavy. Day became evening and then night with still no word. The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results. Corrine, the resident, came in just before 9pm beaming once again. She made the cardiologist repeat himself several times to be sure she heard the number right. “The ejection fraction is 45,” she said with nearly uncontainable smile. FORTY-FIVE??!!!!! “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy. God, who are you? Really who are? I know your face is just beaming, beaming with joy, with delight to bring us delight. So what you’re saying, Lord, is that you have her in your hands? What you’re saying is that this is not hard for you? We need 45, well here’s 45. Thank you Lord, Thank you. I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here. This is not how I envisioned this round of chemo going. The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us? This seems too easy. We never have it this easy. Three weeks just to hang out and wait for her counts to come up? Well, show me what you want this time to look like.” Two days later she was in the ICU. Today was a delightful day of progress. The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents. Then through immense protest and fear, the IV in her foot was removed. These days she is literally terrified if you come near her with anything. She knows she gets a shot every night and has had many painful experiences in the last two weeks. Even her bath elicited cries of, “I’m scared, I’m scared.” It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny. Lastly, we changed her dressing. I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I. This is Solveig’s view on Allistaire’s world. It sobers me. I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit. My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

Nov12

How to Help – Round 3

Posted on November 12, 2014 by Conglomeration of Joy

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Sten and I sincerely appreciate all of the many inquiries and offers to help us in this challenging time. Many of you have already helped us so much and continue to offer more.

One thing I feel compelled to note, is that every single time you reach out to us, to cheer us on, to cheer us up, to say that you’re thinking about us, that you’re praying for us – all of it is so appreciated and spurs us on. Please do not get discouraged if we do not respond back to you as quickly or frequently as you might like. Please extend us grace. I know a lot of people imagine we sit around in the hospital all day, but it is surprisingly busy and because our lives are literally consumed by the tedious, unrelenting fight against cancer, sometimes all I want is 30 minutes to veg out on a movie.

The other more important point is that you should never stay silent because you feel your words are lacking. You are right that your words are insufficient if you expect that your words can make this all better and fixed, but we know that is an absurd goal for mere words. But wrestling and groping to put words to your heart is an action that in itself demonstrates great love toward us. When we put in the effort to try to pin down these immense feelings and aches and joys, we possess them more, we take ground, we gain ownership, we are more full and that is a blessing not only to us, but to yourself and it increases your ability to love others as well. So, don’t think your words have to look all pretty, just try and that will be a bounty to us that far surpasses words that feel so small.

Lastly, life here at the hospital feels like a tsunami has carried us away from our home, our life. While we appreciate all of your well wishes toward us, please don’t cut us off more by depriving us of the joy of knowing what’s going on in your life. If you and I have a relationship, and you are not simply an onlooker, know that relationships are two-way and I still really care what’s going on in your life. Don’t hold back the details because you think you’re trials don’t compare to ours. Yes, our reality lends perspective, but we all have joys and challenges, extraordinary and ordinary, and I want to hear about it. I want to know about the weather back home and what you did last weekend. Send me a text every now and then of that great big sky or snow sticking in your hair.

Here are a few things that would be super helpful:

Pray for us
Text or call us up on the phone and even if we don’t pick up or call you back, know that we have felt the love
Send us a card and better yet – a picture of you to remind us of all those caring for and supporting us
Gas cards (Costco, Exxon)

For Sten and Solveig specifically:

Bring Solveig and Sten a meal. We have set up an online meal schedule which will give you all the details. Go to “Take Them A Meal”
You can then sign up to bring them a meal on a Monday or Wednesday. Please look over what other folks are bringing so they don’t end up eating the same thing for a week or two straight. Please note that Solveig is allergic to ALL NUTS so please be careful to avoid including nuts, even things like peanut oil.
If you’re not much of a cook or in a hurry but still want to help out, a gift card would be great (Co-Op, Papa Murphy’s, Town & Country, Ale Works, Pizza Campania)
If you have other ideas of how you may want to help, please contact our beloved sister-in-law, Jess at (406) 850-3996
Sten & Solveig’s mailing address in Bozeman: 14176 Kelly Canyon Rd, Bozeman, MT 59715

For Allistaire and Jai specifically:

Please don’t send stuffed animals, blankets, crayons, makers, coloring books or sticker books = we already have SO many 🙂
You can sign up to bring Jai a meal on the “Take Them a Meal” website. Allistaire will have her food provided through the hospital.
Gift cards to local grocery store and restaurants (University Village, QFC, Pagliacci Pizza, Metropolitan Market, Starbucks)
If you want to send something to cheer up Allistaire, here are a few ideas: mixed CDs with happy music, small toys, lip gloss, small art crafts, happy decor for her hospital room
One thing I’d love is a few great DVDs that help her learn her ABCs (FYI: I think we have all the Leap Frog options at this point. Thanks!)
Address for Allistaire & Jai: Ronald McDonald House, Attn: Allistaire Anderson, 5130 40th Ave NE, Seattle, WA 98105 or starting 11/19 we can also receive mail at the hospital: Seattle Children’s Hospital, Attn: Allistaire Anderson, 4800 Sand Point Way NE, Seattle, WA 98105

If you want yet more ways to help, have I mentioned that you can donate blood and sign up to be a bone marrow donor? This is a gift that not only blesses Allistaire but many others as well! If you do donate blood or sign up for the registry in Allistaire’s honor – please make a little sign saying so and send me a picture of yourself in the act so to speak!

To donate blood in Montana: United Blood Services

To donate blood in western Washington: Puget Sound Blood Center

To join the bone marrow registry: Be The Match

Do you just have more money than you know what to do with? Here are three phenomenal places you can give to that directly support Allistaire and both children and adults with cancer:

Seattle Children’s Hospital (of the $3,800,000 dollars spent on Allistaire’s treatment so far, the $600,000 that insurance did not cover has been covered by the hospital’s foundation)

The Ben Towne Foundation (aims to create targeted therapies to cure pediatric cancer without the use of chemotherapy and radiation)

Fred Hutchinson Cancer Research Center (to whom we are indebted for Allistaire’s last transplant, Dr. Greenberg’s lab which we are holding out hope may offer amazing modified T-cells to target Allistaire’s cancer after a 2nd transplant, and just lots of amazing science that benefits a wide range of cancer patients)

Thank you immensely for all of your kindness, generosity and love toward us. You certainly diminish the weight of our heavy load and add joy to our lives!