Monthly Archives: February 2015

Feb27

Bewilder

Posted on February 27, 2015 by Conglomeration of Joy

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.”

Feb24

Severely Diminished

Posted on February 24, 2015 by Conglomeration of Joy

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Pediatric Echocardiogram Report: Name: Allistaire Kieron Anderson

Summary:

1. Severely diminished left ventricular systolic function

2. The left ventricle is moderate to severely dilated

3. Ejection fraction (apical biplane) = 11%

4. The left ventricular fractional shorting is 8%

5. Mild to moderate mitral valve insufficiency

6. Markedly abnormal left ventricular diastolic function

7. Dampened systolic amplitude due to poor cardiac output

8. Moderately dilated right ventricle

9. Severely diminished right ventricular systolic function

10. Estimated pulmonary artery diastolic pressure is 16mmHg above the right atrial pressure, based on a pulmonary insufficiency jet velocity of 2.00 m/s

11. The peak tricuspid regurgitation velocity is 2.9 m/s=34mmHg

It goes on for three more pages giving the details that build the summary above. I didn’t cry immediately. My face stood still as I scanned and scanned the words, horrified at how many aspects of her heart are “severely diminished,” or “markedly abnormal.” Somehow I made my way to the quiet room before I began gasping for air, eyes wide, eyes gripped closed and mouth wide with silent ragged terror. What do they call it? A flat spin, when a plane begins this awful downward spin from which there is no return? It seems we are caught in this strong silent force, pulling her downward, down at frightening speeds. I see the world whirling, whirling, images blurring, tears streaming and all the while mouth screaming in silence. I can’t hear it. I hear nothing. I watch from outside and am trapped with her inside this gravitational horror from which it seems no effort can overcome.

The cardiologist says she does not know, she cannot predict if Allistaire will be able to recover from this heart failure. If she does, it will take months. The primary question is whether or not we have the time for her heart to heal. A question no one can answer. A question that feels futile because I don’t see how it will impact what we’re doing here. We don’t really know the status of her disease because her heart is not in a condition to sustain sedation for the procedures necessary to get the answers. Fortunately, her ANC, which hangs around 200, is not so recovered that it is necessary right now, or even advantageous to pursue the answers. But she will of course need more chemo. It seems abundantly clear that if she can ever recover enough function, it will take a long time, longer than the leukemia will sit obediently back and wait for.

On Wednesday afternoon, we will have a Care Conference meeting with Dr. Gardner, her oncologist, one of the cardiologists, and one of the ICU attending doctors. Ashlei our social worker will be there hopefully and last night through tears and few words, I called Sten to come, come to Seattle. Sit with me Sten and bear the brunt of these words that pummel and burn. Dr. Gardner will lay out the chemo options. I know there are several that are not considered hard on her heart that have been effective in the past, whether or not she can endure them at this low functioning or not, I do not know. I do not know. Dr. Kemna, the cardiologist I met with yesterday, said we need to discuss now our plan, our desires, should some more extreme intervention become necessary. She made the point that should Allistaire require interventions like being on a ventilator or on ECMO (a crazy amazing terrifying machine that circulates the blood for the heart externally), we need to have a degree of confidence that she could come off of them. Yah, because otherwise, what would be the point? What’s the point of putting her on a machine to sustain her life if there is no hope for life on the other side of these? This is what the ICU doctor alluded to the other day when she said we needed to discuss codes. If Allistaire codes, if her heart stops, should they intervene, should the room become a mass of swarming bodies intent on reviving her flesh, pulling it back from that dark place?

I’ve been here so long, circling, pacing, hunting and being hunted. “Jackle on your heels,” is how my friend referred to it yesterday. The shock doesn’t let up. It seemed at last we had that beast pinned, we needed only to enact our last attack, the last twist of its wily neck to break it for good…but then I feel the unexpected pressure of noose cutting off my airway. Without sound, without anticipation, the breath is being extinguished. I stutter and am confused, “But don’t you see, don’t you see, we’ve almost killed this foe? What are you doing? Let me finish this act. Let me at long last put an end to this stalker, that I have danced with night after night, lacing through the trees in the dark of night forest.” No response, just greater and greater constriction.

The cardiologists have increased her Milrinone to .75 now and taken off the Carvedilol. Apparently the Carvedilol can not only help with heart failure, but can actually induce it when the heart is so, so sick. This morning they will have to hold her Digoxin because her potassium is a little low. It is ever a careful, delicate balance, intricately monitored. They can go up on the Milrinone, only to 1 or maybe 1.2 and then they would consider adding other meds, norepinephrine and/or epinephrine. I feel myself giving over a little, letting go a little of my desire to be so involved in the details of this med or that at this level or that. I am drawn to her neck, that warm incredibly soft place where I should like to stay. I am pulled to gaze at her cheeks, the perfect slope of her nose, to run my hand up and down the beautiful softness of her arm, to listen intently to her sweet voice. I wish to dwell forever pulling the curve of her little body into the curve of mine. My whole body grieves the thought of ever being separated from her, having her pulled gently, silently away, away…

Perhaps I can just take her and run. How I long to soar with her away from this place. I am just now realizing I had dreams of flying last night, of running soft through the grass and then just lifting off. But there was too a severe hill, so steep that you could never, ever climb down, rather it was a ledge, a cliff. But the girl in front of us said she thought she could make it despite having seen her brother fall straight to his death. I told Allistaire, who crawled behind me, No, we will not go this way, we will go around, we will find another way down. And then that girl jumped, she just leapt and indeed fell utterly to her death. I felt flattened as I slept last night, every single surface of my body pulled so heavy against the couch/bed. My face is flat. It is weary and aches dull from hard crying. A new beautiful day has come. I acclimate, I adjust to this new reality. Just I have done on countless turns in this spinning world. Get slammed. Slowly arise. Walk tentatively, knowing it is likely you would be slammed again to the ground, cranium ground into dirt.

The light is growing longer in the evenings and on these clear days I am transported back to late summer evenings with Allistaire, out on pass from the hospital, going to Magnuson park after all the other kids have gone home, and then we come to play. We would arrive as late as we could back to the hospital. There is a sweetness to those memories, a glow of mango light at the horizon blending into green and the vast stretch upward into perfect blue of night. Birds singing in the evening and trees all lush, green upon green. I remember clear still mornings walking high on the sky bridge of the 7th floor, Mt. Rainier looming blue to the south, awaiting that pink fire of first sunlight. The cold of new day, birds, ever singing, twittering, calling, glorying in their existence. I felt strangely serene, with the cold clear thought that perhaps I was there to help her die well, to stay by her side, loving, caring for her through each step toward that end that seemed ever closer. Those days two years ago loop around wide to now, linking, completing a circle. I think back to those days and raise up those truths, those clarities the Lord showed me then. The suffering and the joy sit side by side, neither undoing the other, both deep, both broad, both stretching to the horizons, swamping and flooding my heart.

The music slows, vast space between each note. My heart calms, slows, rests. As I came down the hall to the Unit at the end of nap time and saw that perfect white sparkle of first star, alone in the evening sky, I paused long, wondering, wondering, what do I pray? What do I come to You and ask oh Father, oh Father. I seek to abide in you, rest in you, just rest, still my sore arm from its work, let me lie here and rest in You. I have no idea what the days ahead hold. I have no strength to look out long, scanning the horizon, squinting to try to make out what is ahead of us. Rather, I shall curl here with my sweet girl and rest in the shadow of His wings, sheltered, beloved, held. Be still my soul.

Feb22

Wait and See

Posted on February 22, 2015 by Conglomeration of Joy

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Strange how you can have expectations, just ideas you’ve grabbed from where? Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat. Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week. Upon what basis did I come up with those numbers? Out of thin vacant air. Today marks her 37th day in the PICU. Today we begin our 6th week. I remember a friend telling me they were in the PICU for two months. “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight. Last Tuesday, 2/17, we were scheduled to be transferred to the BMT (Bone Marrow Transplant) team. We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin. It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come. In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal. The reality is sinking into me that she may never get to transplant, or at the best, it could be far off. A summer gone. The doctors tell me we must be patient, and wait and see, that it is often best to be patient. Patience, yes, I know something of patience. But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans. While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent. To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it. Her heart rate and respirations trended up slightly and there was the issue of nausea to consider. They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms. While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today. I feel disheartened. Yesterday they decided to put her on Digoxin, another heart med. Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal. The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone. They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels. Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.” Her Lasix draws off potassium which they replace in her TPN (IV nutrition). On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.” It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors. Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure. Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo. I don’t feel very optimistic. The BNP hasn’t gone down really. We’ll see. She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons. It was originally planned for Tuesday solely based on protocol. If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on. As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering. However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation. At this point, her severe heart failure makes anesthesia more risky. Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team. Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly. Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks. I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened. So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast. After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down. The nurse re-loaded her cup and she finally got in the minimally required amount. The results of the CT were mixed. “There is minimal residual wall thickening involving the sigmoid colon. The rectal wall thickening has nearly completely resolved. New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening. There is a slight interval increase in degree of surrounding fat stranding. The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.” So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete. But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now. Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema. These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting. I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation. My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near. I love that she too is so passionate about finding a way through for her. We are both assuming her marrow remains in remission. So she proposes we put her on Azacitadine given that it worked before. (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.) I wondered about possibly using Decitabine since it’s a little more hard-core than Aza. We do still have her chloromas (solid leukemia) to consider. She said she would consult the other AML docs. She also mentioned Clofarabine as an option. The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan. Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine. All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer. Wahoo!!! I love options! After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant. But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is. I couldn’t help myself, knowing all that has transpired over this last month. I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day. Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars. Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days. This puts her total bill since diagnosis well over 5 million dollars. Isn’t that staggering?! Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?! What if that money could be put toward cancer research? What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer? What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks? We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research. Such an exchange is not possible. But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help. You have felt powerless to do anything to help Allistaire. Giving to cancer research may not feel like directly helping Allistaire but it is! First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey. It is tangible. I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more! Will you stand beside me? Will you give? And you know what? We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research! Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission! This is not some ambiguous, indirect, vague blessing. Cancer research is precisely what provided her last transplant which has given her life the past two years. You say you want to help. Your heart is heavy with grief for us. You wring your hands wondering what you can possibly do. GIVE! Support cancer research at Fred Hutchinson Cancer Research Center! It’s not hard, it’s not complicated. Give. Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.

Feb18

Weeping

Posted on February 18, 2015 by Conglomeration of Joy

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Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat. I feel I can’t breathe. I hold back tears more times than I can count. I’ve felt frantic, in shock. She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.

Her BNP today is 4300. I don’t know why. “Heart Failure,” is all I hear now. It supersedes everything else. Her echo was terribly bad on Monday. Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin. They tear and burn and with all my flesh I despise them! I hate them with violence and I want to tear them to shreds. I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO! You CANNOT be. You are not allowed here. You are forbid to bind yourselves to my child!

I’ve been trying to get her to eat. Ten bites of chicken noodle soup was the goal for the first half of the day. Three bites of apple sauce. So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.” I strain to find some other cause, some other plausible explanation. And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero. Sunday it was 30, then 93, 75 and today 172. Her belly pain has increased substantially with pretty consistent pain throughout the day. My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut. This causes the pain and “worse before better,” just like the infusions of granulocytes did. There is a lot of evidence too that she is having substantial pain related to anticipating pain. This ICU stay has terrified Allistaire like nothing I have ever seen. It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear. She has experienced so much physical pain and she feels she can trust no one not to hurt her. Oh it hurts my heart, it hurts, it hurts. So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.

I have long sought to yield Allistaire to the Lord, to lay her down at His feet. By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me. While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses. But oh, how it hurts so bad. Suffering and loss are not some abstract yielding. It hurts down to my fingertips, they ache with blood saturated with pain. My flesh throbs with the deep, deep sadness of loss present and anticipated. In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes. I walk, I walk, intimately aware of every detail.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide. I see our doctor walking down the hall before me, whistling. For him, he knows we are doing all we can and in that satisfaction he can rest. But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough. It is not satisfying to me. I want Allistaire to live! It is hard for anything less to ever feel like enough. I went home to Montana this past weekend and it was good. It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life. Oh how I long with desperation for ordinary life. A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves. It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort. I cannot get that blue bucket out of my vision. We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be. I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live. Those memories precious, feel like distant, far off lands you wonder if they are truly real.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. I rose early to exercise, shower and eat breakfast. As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad. They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant. They have been given a room there because this sweet girl is now on Hospice. Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant. I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her. Nothing left. They must give into that beast. And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath. I looked upon cancer and its devastation as I went to get breakfast. My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.

I’ve always known it could come to this. But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom. I weary of numbers that slice. The thing is, I know the Lord will be with me. I know that He will hold me up as He does today. It seems too awful to endure and if so, that means I won’t have to endure it will I? No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure. But why, why must this be? What is the point?

A friend of mine whose son died recently fears that her son’s death was punishment from God. How I long to offer her words of life that would take away this overwhelming burden. I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned. Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life. What sort of exchange is this? Why this wretched suffering so God can get glory? Does He really need more glory? My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole. But this is not the end point, His glory is not His aim. His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life. He seeks glory that we might know His love, for that is His ultimate glory, His great love. He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers. He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.

Why must Allistaire suffer? Why must I? In my finite view with my finite heart I can only guess and grab at a handful of small reasons. But what if it is for my friend? What if in my brokenness she can see the hand of God extended? What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life. It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible. Who am I to liken myself to Christ? What is my life? It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him. Shall I suffer? How shall I live out each of these days that seem to cut and gouge relentlessly? I walk, nay, I am carried by Him. I now rejoice in the dependence in Him I once reviled. I know not the days ahead, I even dread the hours that will bring by the cardiologists. I don’t know how to let go of this fight. I don’t think I shall until there is nothing left, nothing left.

Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me. Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you. Spirit of God, help me to be still and wait patiently for you.

Here is a link to sermon by John Piper about the blind man.

Feb12

Stagger, Tremble

Posted on February 12, 2015 by Conglomeration of Joy

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We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. (2 Corinthians 4:8-9)

Hard pressed. Perplexed. Struck down. The weight of sorrow presses so heavy on my brow. Sensations so familiar, so brutally common. How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through. I have never had a stalker, never been abused. But I taste the mineral tang of terror reinforced again and again, blood on the tongue. The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare. My heart exposed from tearing flesh. Assault, violence, silent snuffing out with dark weighty force. I weary circling round and round with this foe. Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief. Relentless. I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue. Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance. That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it. Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar. Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land. And I yearn for you. My whole being angles forward in desire, attraction. Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place. Day by day I must walk. Another day with numbers that do not change. A BNP that rises here and bobs briefly down, never nearly low enough. Every day the same, the same, the same, “no data,” the labs read. “No data.” There is nothing, not a single white blood cell in 28 days. No sign of marrow stirring. Silence. Absence. Cavern empty. And yet, she has changed. That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising. Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact. Allistaire Kieron Anderson is emerging from this ragged fray, this assault. I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs. Peach fuzz. Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin. She plays and talks and wants me to see what she’s done, what she’s created. I swoon and am drawn in, her irresistible pull of delight. I adore her, my whole being arches forward, captured by the beauty of her sweet spirit. I cherish her.

Heart failure. Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage. Heart failure. I tell Dr. Hakens how I hate to hear those words. “Well, you can’t sugarcoat failure.” Another blow. Monday’s echo was devastating. The door to transplant slammed closed. Her ejection fraction was 29 and shortening fraction 12. The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination. What must be do to stop this torrent of loss, I wail? Are we doing all we can? We push through, we push, we walk forward. There must be a way, there must. This cannot be it. Oh don’t let this be it. How can we accept defeat. How can we just let this bright force slowly fizzle and die? All we have known for three years is FIGHT! How now can we surrender; raise the white flag and say enough? Death as end point has always, ever been there – stark on the horizon. A black silhouette impossible to disregard, impossible not to recognize. But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won. But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse. This image wounds in a uniquely awful way. I breaks my heart a fresh.

We have devised a two-part plan. With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted. She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis. Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function. It is more of a stabilizer and optimizes blood profusion. This has been essential with the great fluid load of her infection and need for healing of her gut. In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening. Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.” Thus Tuesday morning began with her first dose of Enalapril at half the max dose. That night her Milrione was weaned down from .47 to .3. Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25. The goal is to also add on Carvedilol today and Spironolactone tomorrow. Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.” Spironolactone is a diuretic than helps reduce fluid retention. Enalapril is an ACE inhibitor. ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels. As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile. I am constantly, non-stop blown away by nature. The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life. But I cannot deny the wonder of it all. The spectacular, pure extravagant beauty of God’s creation. He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant. At this point, her transplant is scheduled for March 19th. This gives very little time for her heart to recover as these medications are not necessarily fast acting. Before I even talked to Dr. Gardner, I knew this was likely the course we must take. At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle. It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month. The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off. More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her. The measles virus can linger for 1-2 hours after someone infected leaves the area. It hangs in the air, impossible to detect and thus avoid. In a person with a normal immune system, measles can be awful. In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer. Time is a scarce resource in the life of a person battling cancer. Time is a luxury. If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks. Being undetectable in no way means it is nonexistent. Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken. If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia. Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic. For the last 28 days her marrow has not produced one blood cell. In her last round of chemo, her marrow began to recover after 14 days at zero. This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced. I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood. Thankfully, there continues to be no evidence of blasts. Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything. As is simply ever the case, we wait. We wait and see. We wait.

Every single day feels like an impending death sentence. Every single day a new number can indicate the tide has turned once again. This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420. Everyday begins with these numbers. It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow. Waiting is hard, really, really hard. But I have discovered a secret, a mysterious way of God. He loves to make us wait. Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own. We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope. We have set our eye on our desire immediately before us. But God…He is over all, under and around, above and below and on all sides. His view engulfs our little view. He waits. He waits with us. He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand. He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face. This is His aim. This is His yearning, His craving, His unbridled passion, to draw us to Himself. It is not that He is unmoved and cold toward my bleeding heart. It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye. It is that He has clarity of vision. He declares that life comes solely, only, directly from being bound to Him. Love is patient. Translated in the King James, it says love is long-suffering. This is the very first descriptor of love. God is love. God is long-suffering. He suffers with us in our sufferings. He endures with us. When at last will we come to the end of ourselves and see that He offers us life. Life abundant. Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters. For You have filled this space with your bounty, your halting beauty, with light unearthly. I swoon as I fix my eyes on You. You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me. You satiate and I come running for more, more of you Lord! I come weeping, weeping, calling out for mercy. Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do. When we join our resources together, we really CAN make a difference in the options available to children like Allistaire. By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

Feb4

Get STOKED!

Posted on February 4, 2015 by Conglomeration of Joy

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The above three pictures are of Allistaire on February 4th in 2012, 2013 and 2014. Each of the last 4 February 4ths she has either been in treatment or about to begin again due to relapse.

Today is World Cancer Day. Today is a day to take note, to lift up your chin and force yourself to look cancer in the eye. Because let’s be real, most of the time we want to look the other way and pretend we don’t see that dark shadow looming in our periphery. Look around at your life – how many of those you love have been touched by cancer? And I don’t mean “touch” in the desirable sense. Maybe impaled, scarred, lacerated, bruised, wounded, ravaged. Maybe these are better words to describe cancer’s impact. Yes, cancer has also brought a lot of good in my life, but I will not for a second pretend that I wish cancer on anyone. How can I not desperately want cancer to be stopped, forever?! And it’s not just Allistaire. It’s my sister-in-law who didn’t have her mom there when her sons were born. It’s my friend Megan who lost her baby because of her own cancer. It’s my aunt who had to make the hard choice to have a mastectomy because her mom died of breast cancer. It’s my cousin who has decide whether or not she must cut out parts of her body because she bares a gene known to show high risk for breast cancer. It’s my friends’ sad, weary eyes that long to have their child back.

Today I bring you videos to tell the story. The first was made by our friend Abi who was in treatment with Allistaire, also with AML. I love this video because it is a window into our world. I love this video because it’s full of faces dear to us. But what I can’t ignore is how many faces are now gone, dead. Cancer does not leave one unscathed. If you make it out alive, one almost always bears the scars and damage of treatment. The second is of a little 3 year old boy named Ben who died of neuroblastoma. Out of the deep well of their grief, his parents started the Ben Towne Foundation which is linked to Seattle Children’s Research. The goal is to find cures for cancer that do not rely on chemotherapy and radiation and to accelerate research to get to real patients who are desperate for options now. The next three videos provide a window into one of the most thrilling and promising areas of research today – the idea that researchers can genetically modify our most powerful fighting cells, T-cells, to identify and destroy our individual cancer cells. Lastly, to lift your spirits there is the “Stronger,” video filmed on the cancer unit at Seattle Children’s while Allistaire was in treatment the first go around. Life is worth fighting for. These kids are worth fighting for. Your mom and brother are worth fighting for.

If you’d like to tangibly support cancer research, I invite you to support me in Obliteride which is a fundraiser bike ride for Fred Hutchinson Cancer Research Center. Every dollar you give goes directly to cancer research. There are a number of very worthy places to give your money to support cancer research. I have chosen to focus my efforts to support research at Fred Hutch because Allistaire’s life has been directly sustained by their research through the clinical trials that have yielded her last transplant and holds the promise for her cure with this next transplant and subsequent T-cell trial.

Click HERE if you’d like to support me in OBLITERIDE – accelerate the cure and put an end to cancer for good!

Look At Me Now

The Story of Ben Towne

T-Cell Therapy Explained

Fighting Fire with Fire

The Mighty T

What Doesn’t Kill You Makes You Stronger

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.