Monthly Archives: March 2015

Mar29

Quiver

Posted on March 29, 2015 by Conglomeration of Joy

I can’t tell you what it’s like to lose your child. I simply don’t know. But I can tell you what it’s like to walk through this world with your child’s life ever, ever hanging by a thread, ever threatened, the wolves snarling, the glint of teeth. I see the girl in her soccer uniform with her mom and little sister as I descend the escalator in Target. My legs weak and muscles quiver, drowning in some sort of chemical sorrow, trying to catch their breath. Such beautiful normal life. People out living their extraordinary, ordinary lives and I feel perpetually trapped on the other side of a glass wall. The little blonde haired girl sucking her thumb in the coffee shop, wearing the same tights I once bought for Allistaire, tights not too small to wear, just irrelevant in the world of the hospital. I walk through the clothing section for little girls, barbs pierce my flesh. I buy her clothes because clothes mean you are alive, you have a life. But I don’t buy a size up with a future in mind, even clothes that acknowledge the change of season only serve to declare her plight, a life lived inside where temperatures never change, wind never blows nor rain falls. I see people out in their yards raking, mowing, digging, flowers bursting and I envy, I envy. I long to be on knees, hands in dirt, pulling weeds, clearing the dead debris of winter and sinking flowers into soil. My life is lived in strange parallel, at moments seeming to cross over but ever tied to a rope threatening to pull me down, pull me under.

I have routines that on the surface create the ruse that there is normalcy, but these days are only normal because they repeat without seeming end. Weekends are strangely hard. They are a gift because they are a chance to be out of the hospital while my parents stay with Allistaire and I get two nights of unbroken sleep. But they are spent alone. Alone I go to the movie. Alone I eat at a restaurant. And I have chosen this. There are many who would join me but I have preferred to be alone because I so weary of the constant barrage of human interaction every day, all day and night at the hospital. I am desperate to flee from it and yet, I don’t want to be alone. I want to be with my family. I want to be doing ordinary things like waking up together in the morning, making breakfast, doing laundry, going to the grocery store, sitting in my chair by the window, sweeping up the incessant needles from the fir tree, making dinner. But I am cut off from these ordinary pleasures and so I pass through spaces, silent, appearing to be apart of the world of the living, but like some agonizing spirit, dwelling in the space between.

My mind feels gripped in a vice, pressure now intensifying, now releasing but ever-present. The numbers are relentless, my brain analyzing them ceaselessly, turning them over this way and that, holding them next to sets of numbers from other days, trying, trying to make sense of it. What am I seeing? What do they tell me? I look at her and I see bright thriving jubilant life that could and would flourish all the more if we could just escape the grip of this place. We have officially passed the mark of 365 days lived within this hospital, one year of her life spent within the confines of these walls. Twenty percent of her life has been lived constrained to Seattle Children’s Hospital. Sixty-five percent of her life has been spent fighting for her very life. I weary. Oh how I weary and yearn with panting desperation at times to just get away, get out, flee. But there is no escaping, there is no breaking over the walls in the night and running and running until you can’t anymore. The only way out is to be released.

Last week the doctors had a planning meeting. On that day, Allistaire’s BNP was a beautiful wee little 500 or so and her kidney function numbers, her BUN and creatinine were gorgeous, proclaiming happy kidneys profuse with blood. Most of last week was an ongoing struggle with her being nauseous, throwing up consistently once or twice a day. Sometimes she would just be nauseous in the morning and throw up once, having no issues the rest of the day. Some days she would eat well, getting in all her needed calories and fluid, just to throw up ten minutes after going to bed. I felt under tremendous pressure, knowing that nausea and lack of appetite can be signs of heart failure. Helping her get in the necessary calories and fluids is totally my realm of responsibility and I was desperate for her to demonstrate that she could do it. Yet each time she cried out in terror of impending throw up, clutching the little gray basin in front of her chest and out would come hours of effort, I felt such overwhelming defeat. Each time she threw up it meant we were behind on calories, behind on fluids and with far less time to get them in before the end of the day. The moment she finished throwing up I had to put milk or juice and food in front of her again, pushing, pushing her to consume.

There are so many layers of reasons she would struggle to eat. Three years of chemotherapy has created plenty of negative associations with eating. Incredible gut pain from typhlitus has made her on much higher alert in terms of stomach pain. Her entire system of stomach and intestines were at complete rest for nearly two months during which time she was on three types of hard-core broad spectrum antibiotics. Everything is slow and any pain, whether from gas, need to burp or nausea all gets mixed up in her mind and triggers her to throw up. Her gag reflex has intensified dramatically. It has all led to an all day long effort to get in food and drink with repeated defeats. I don’t know if there is anything more core for a mother than the need to feed her child. I feel it throughout my flesh and far beyond the workings of my mind, this desperate need to provide her nourishment and all the while fear of how it will be interpreted by the doctors. Thankfully, both the PICU attending and our ICU Continuity Care doctor, affirmed that Allistaire has many reasons to struggle with eating and that they were not overly concerned about it being directly tied to her heart function, given how encouraging she looked clinically and with all her labs. I finally felt some relief, having been given permission by the doctors to let down my guard a little.

I was encouraged to, “look at the trajectory.” By all other measures she was doing great. Her BNP was bouncing around in the four to five hundreds and all her other labs were good, especially once they transitioned her from IV Lasix to PO (“Per Os” in latin which means “by mouth”). The thing is though, a slight bump of the numbers in the wrong direction sets you on high alert, the ringing fear rising. Yeah it’s a little blip but it could be the beginning of a frightful trend. And so it has been, her BNP slowly rising from that beautiful low, each day a little higher and today 861. Her BUN too slowly rising from a happy 21 to 31 today. But the mind bending thing is, she just looks so great. She looks great! She’s happy, she is playful and less nauseous, rarely throwing up now. Her average heart rate has gone up but at least some of this is due to the fact that she is far more active these days. Ashlei, our social worker, saw her Friday after a week and a half gone, and exclaimed that she just looks so good, far more her normal self. It’s true, her cheeks are pink and she has a delightfulness to her being. It is a hard contrast to these numbers trending in the wrong direction.

Are we about to be dragged down again under those dark suffocating waves? Was this just some fantastic lull, a beautiful blip? May it not be. Her echocardiogram is scheduled for tomorrow morning. I know to expect her BNP to be high tomorrow as it has been each time she gets a red blood transfusion, which she got this morning. We’ll see what her BUN and creatinine are. I feel terror, terror. What will I know tomorrow night? How will the world tilt and spin in these next 24 hours? I don’t know what to wear. It sounds absolutely absurd, but it’s supposed to be sunny and 66 degrees but some how in some stupid way I feel distressed to wear cheery clothes that may be paired with weary tear strewn face. I thought we might order Pagliacci’s for dinner tomorrow. It’s always fitting, whether in sorrow or rejoicing, but which will it be tomorrow?

For so long I have been tossed this way and that, flesh shuddering against stone walls, the force bruising already bruised body again and again. I am battered, tender and any new hit hurts deep and hurts sharp. Like Allistaire’s chemo weary heart, so deeply wounded from relentless assault, so is my heart, my being thrown against the rocks so many times. Am I overly dramatic? Perhaps. Am I asking for pity? No. But I find the tears so close to the surface on so many days. It feels easier to quarantine my life to that of the hospital world rather than having to confront the extravagance of other’s ordinary life, a life for which I am ravenous. I had allowed my mind to wander with hope for escape. I told Allistaire there were daffodils and tulips blooming outside. I have yearned with a keen intensity for her to be outside. I am desperate to see her out on a playground with shoes on, not slippers. The hoped for plan was that Allistaire would be off of Milrinone completely sometime this week. She has weaned down .1 every three days or so and is now, as of Friday afternoon, at .1. All she had to do was finish these last few steps, spend 24 hours in the PICU with no Milrinone and then transition upstairs to the cancer unit for a week for monitoring and getting her at the right dose on a few meds. Then, then we would be free. We would be released like birds too long in a small cage. I could taste the beautiful sweet hope and see its translucent yellow ethereal light.

Like some triggered trap snapped closed, these numbers have shut out such lovely hopes. Perhaps I should not have hoped. Perhaps I should have kept those black blinders on my eyes, a beast of burden commanded to look only at the path immediately before you, be not distracted, keep your view small. I have not figured out how to make this hurt less. The only solution seems to be to be less tied to her, to loosen my grip and gain some distance, watching as if a movie, a story of some other life. But I can not. I can not. I can not want less to see her live. And even as I feel such ripping soaring hope for her to live, I fear too what sort of life she might have before her. I want her to live that she might be ravaged all over again by transplant. Who might she be on the other side of that? I see the ravages other children have endured to keep their life, ravages that keep devouring more. But wouldn’t I want a broken Allistaire rather than no Allistaire? I would take her broken in a heart beat over having her no more. But is this just my selfish wish, for my own good? I look at her bright, cheerful face, her endless pleas to play hide-and-seek, her wiggly joy and I think, no, it is not just my wish. How could I walk away from this bright spark? How could I let up for one moment attempting to keep that flame fueled with life?

I am lulled by the cycle repeated over and over and yet shocked that it is once again Sunday afternoon and I am preparing for another week in the hospital. Today marks her 80th inpatient day of this stay. For seventy-two days, she has been confined to the PICU. And here we are, on the cusp of another week and another echo. The snow falls, flake by flake, finally amassing to something visible only when millions have fallen, though each flake so beautifully unique, intricate, designed. The season passes and returns again. The snow falls and is eventually blanketed by another layer, and another. On and on it goes, year after year, individual snowflakes bound one to another and pressed down, compressing under the weight above of snowflakes past and snowfall present. With imperceptible motion, gravity pulls at the enormity of the glacier, drawing it down, gouging sheer rock from its place of such seeming eternity. And one day you stand in that magnificent space, that airy immensity of openness where once there was rock and now there the indescribable joy and feeling of exhilaration, of peace silently emanating from an emptiness between ridges of mountain, bright blue lake before you and green sweeps of valley rising all around, blankets of wild flowers, tender and tenacious.

What is the Lord up to? I cannot tell you. I stand in the storm, snow falling all around, each individual flake unique and perfectly designed and joining the masses to become indistinguishable. I may never see with these earthly eyes, that breathtaking mountain valley, blue lake reflecting blue sky. The Lord’s ways are not my ways. His story, His creation spans eternity and I and this story of Allistaire are but a breath, but a passing vapor, not insignificant but designed, intricate, unique. I don’t know what to pray, my heart too weary to muster words, but I fall at His feet. I am so very weak Lord, so bruised and tender, tired, so tired. Why so downcast Oh my soul? Why so downcast? Put your hope in God, put your hope in God. He is my only hope. He is my anchor in this storm, this thrashing back and forth, this constant buffeting of wind, I am tied to Him, in Him.

Mar16

Buoyant

Posted on March 16, 2015 by Conglomeration of Joy

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It’s amazing how your whole world seems to shift when you suddenly see that crack in the door that seemed so thick and dark and impenetrable, but there it is, this crazy brilliant blaze of light, flooding, arching, enlivening the air around you! Your foot steps out with greater stride. You yearn for a jaw and muscles of cheek that would enable a bigger smile, a fuller beam from your face. You want to stop people and tell them, you want to lift your throat to the blue, blue sky and declare, “My kid might make it!” I’ve been stopping to smell the flowers, the ones that smell like jasmine and fragrant the air going up the stairs to the parking garage. The sound of birds in the morning, birds in the evening, they now sing a song you feel yourself singing – a song of declaration that life cannot be held down by death. I careen my neck backward and stare up at the blue of sky broken with criss-cross of pale pink blooms, thousands of petals on cherry trees. You rejoice that one can buy daffodils and tulips, even if you cannot because you inhabit a world where no plants are allowed – but they are there, exulting that spring has come, wild, exuberant, lush spring has come again to the world!

My rejoicing at the coming spring came at the very first signs of its presence, at the crocuses pushing through the soil, at the tender buds on seeming dead trees, at the sound of that first robin. Spring makes my hear soar, soar. In the midst of my darkest days over the past few months, spring has quickened my step, reminded my heart to hope, to be on the lookout for life, for rejuvenation, for overcoming the cold grip of seeming death.

But today I was amazed as I walked up to the front of Metropolitan Market – the absolute extravagance of life just exploded with glorious color around me. I wanted to tell the people to stop and stare and gape and be in awe of how rich and overflowing this life is! Look at this life! It is a wondrous, wondrous, mind-blowing sensation to realize your child, the one seemingly doomed to death, might just make it, might just have a way through. I tell myself to restrain, to not hope too much. The end is yet veiled. But I DON’T CARE! I am full of swirling, bubbling joy at the hope, the possibility made more tantalizingly real, that Allistaire Kieron might just do what was said probably couldn’t, wouldn’t.

My dad, who spent the weekend with Allistaire, texted me as he left the hospital yesterday, that Allistaire would have an echo today. Sudden heat of fear swamped over me. I thought it was going to be a chill Monday. I thought I wouldn’t have to worry about another echo until next Monday. I scanned and scanned, running over all the details I knew about Allistaire, looking for a glimpse into today’s echo results. What I knew is that Allistaire’s appetite had continued to improve and her energy level was nearly off the charts. The girl was so full of wiggling, giggling life! Signs of the wean off Milrinone failing would be fatigue, lack of energy, nausea, lack of appetite, increased BNP, increased heart rate, decreased profusion, weaker pulses, slower capillary refill, worsening kidney function numbers – none of this – there was not one indicator that the drop from .75 last Thursday to .6 had any negative effect. If anything the girl just seemed like she should explode out of the ICU out onto a playground.

This morning I awoke with a prayer that is prayed nearly everyday as my alarm goes of at 5:37am. “Lord, hold me up, come what may. Lord, oh God, well you already know what I so desperately want – you know I want Allistaire’s heart to regain its strength so she can go onto have her transplant and onto life without cancer. Help me to yield to you. Oh Lord, hold me up, hold me up, come what may.” The labs showed an ANC of 808, a BNP of 669 and great kidney function numbers. Did I dare hope that today’s echo could be, well, could it be, maybe, a wee bit better? Such a frightful thing to hope, to stick your neck out rather than roll into that protective ball like a potato bug.

The echo was wrapped up by 9:19am and I was comforted by a giant font of a heart rate on the monitor that came in about 115 beats per minute with a respiration of about 20. So, so much better than two months ago when her heart rate was in the high 180s and her respirations in the 60 plus breathes a minute. Then the hours wore on and on. Allistaire’s been popping up each morning about 8am and has been in rounds with myself and the doctors nearly every morning. She loves it. They love it. I love it. I don’t think a patient in the ICU has ever participated in rounds before. But the 8am wake-up makes the day seem two hours longer than in times past. I had lots of time to work on writing a pile of thank you cards that had been harassing me for weeks. I asked the nurse nearly every hour to check the computer to see if the echo results had been posted yet. By 1:30 I asked the nurse to page the cardiologist to let her know Allistaire naps at 3pm and I’d really like to hear from her by then. At about 10 to 3 she said she’d be there in 15 minutes.

Jenn, the Child Life Specialist, was in doing some medical play with Allistaire where Allistaire gets to do to a doll all the sorts of procedures done on her and she and Jenn talk nonchalantly about it while Jenn gathers intel about what Allistaire prefers when she gets a shot or has to have her lines flushed. Allistaire is joyfully oblivious and just likes putting bandaids on the doll, now named Jewel. I know the time is coming, it’s coming, at any moment Dr. Kemna is going to walk through that door. I suddenly realize it could be worse, oh what if it is worse? How utterly disappointing. I pray. I remind myself that God is in control of every detail of Allistaire’s flesh. No matter the results, they come from God’s hand. He will be the one handing me the results of this echo. Will I look beyond this moment, beyond this detail of what I so desperately want. Will I lift my eyes and look out, up, wide, high, deep, not just temporal, but eternal? Hold me up Lord. Hold me up.

When Allistaire spies Dr. Kemna, she immediately dives underneath her blanket, a quiver of barely constrained glee. She has clued me into the game we must play. Jenn and I begin to fear the soaring of dragons looking for some tasty girl to munch on. Oh dear! Where can Allistaire be? Oh it looks as though the dragons already got her, she is nowhere to be found. The blanket is a roiling flowered sea of five-year old delight with periodic poking out of legs and little fingertips gripping the edges. Dr. Kemna joins in and only amps up Allistaire’s joy. Finally she emerges and Dr. Kemna listens to her heart and I restrain myself a few more seconds from demanding the only number I care about today. Finally, finally she turns.

Dr. Kemna tells me she doesn’t think Allistaire’s heart has improved as much as the number indicates. She has an ejection fraction of 35 (up from 21 last week) and a shortening fraction of 15 (up from 11). My heart leaps and squeals with unfettered joy! In further conversation, Dr. Kemna tells me that Allistaire’s heart does look a little better, but she’s not so sure it looks as good as an EF of 35, maybe more of an EF of 29. Huge smiles! Massive elation! 29?! That’s awesome too! I mean, good grief, 35 is spectacular but even if 29 is the conservative number – that is so totally glorious! She says there is a clear improvement from the echo three weeks ago when her EF was 11 and the most clear improvement is that the mitral valve looks better. Apparently, once the mitral valve begins to go, as was so clear on that awful echo three weeks ago, the heart just begins to lose steam and try as it might, it just gets worse and worse. Once the heart is so dilated that the mitral valve begins to fail, the blood regurgitates back into the chamber and efficiency is lost. This makes the heart have to work harder which dilates the heart still further, only worsening the whole situation. But Allistaire’s mitral valve is on the mend and this, Dr. Kemna said, is the most encouraging sign for her heart. The other great thing is that Allistaire is still not even on the maximum number of meds that may be able to help her heart recover. As her dose of Milrinone goes down, the cardiologists are hoping to add Isosorbid dinitrate & Hydralazine. Once she is stably off Milrinone, they would add on Carvedilol as well. I’m all for as many option to help sweet girl’s heart as we have available!

As Dr. Kemna gazed at Allistaire, now frolicking to an even greater degree with Jenn and Ashlei, our social worker, she asked what is keeping Allistaire in the hospital. “Milrinone,” I said, “only Milrinone.” She’s off TPN and lipids and is successfully getting in enough fluids and calories each day, her neutrophil count is far over the needed threshold of a minimum of 200 and she is taking all meds by mouth with the exception of one dose of Lasix each day which can easily be converted to by mouth. Even her chemo, Azacitadine, which is set to start sometime this week, can be given out-patient. Dr. Kemna agreed that Allistaire is definitely ready to take the next step down in her wean off Milrinone and ordered the dose to drop to .5. When the heart failure team met last week, they all agreed that Dr. Hong’s proposed .1/week wean was far too slow. A typical wean is in drops of .25 every couple of days, “So,” Dr. Kemna told me, “a .1 drop every one to two days is still very cautious.” From what she explained, often you can go a bit quicker in the wean in the middle of the doses and then just slow down more when you get toward the very end. At this point, she will be checking in on Allistaire each day and will reassess whether or not she can drop to .4 either this Wednesday or Thursday. “If she continues to look this good, she’ll have no problem with the next drop,” Dr. Kemna told me.

Bright, crazy beautiful beam of intoxicatingly beautiful light! Oh, and Allistaire is no longer a baldy top. She’s more of a fuzz top now. So soft and so seriously adorable. Thank you God. Thank you!

And here’s a little gem for you to enjoy – Allistaire as a star in a short bit on PBS about music therapy 🙂 Click HERE

Mar11

Glimmer

Posted on March 11, 2015 by Conglomeration of Joy

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Delayed Gratification. Joy Set Before Me.

You can endure a lot…if, if you see a glimmer of light. If you can grasp onto that shred of hope. But if it’s all for not, if nothing will come of all your straining, all your loss and sacrifice, it’s ever so much harder to press forward.

But…you catch that glimpse…you sense before you that the light is coming and it invigorates you to lean into the endeavors before you.

I don’t know if Allistaire will make it out of this alive or not. There is so much good I can easily imagine if she lives. There is also good I can imagine if she dies. If she dies, I pass over that line. I enter a territory I have never yet had to tread. If she dies, I will dwell there, with them, with Beth, Merle, Rachel, Julie, Devon, Ryan, Darliss, Janett, Shannon, Susan, April…I will share in their company and that would be good and I would have an understanding that at this point is only imaginings. I cannot let go of my sweets but it hurts my heart to not be able to draw yet closer to them in their places of pain and hope.

For now, we are here, here in the dark but with a glimmer. For me the glimmer began with remembering the statement that, “I would be flabbergasted if your insurance approved this transplant.” This was voiced by a woman who has been integral to coordinating all the details of transplants for years. And you know what, Blue Cross Blue Shield of Montana has approved Allistaire’s transplant. Flabbergasted has happened and it was a sweet, tangible reminder that the “unlikely,” has happened so many times for Allistaire – good and bad. What shouldn’t have been, has. So if the doctors say she probably won’t recover the needed heart function, well, they could be right, but they might not. Flabbergasted can happen. It is a reminder that God will do what HE will. There is SO much to tell, so much in fact that I’m sure I will fail to get it all down.

When did the shift begin? On February 15th Allistaire finally showed evidence of her bone marrow recovering after 38 days at zero. Then there was a solid week of serious pain as her white blood cells flooded her gut and got to work on healing. Sometime in the few days preceding our especially difficult care conference, as her ANC continued upward, her pain began to subside to the point that she now needs only one dose of pain meds every several days, if at all. On the day of the care conference something wondrous happened. Her BNP (Brain Natriuretic Peptide), dropped below the terrifying lab value of greater than 5000. This has been its approximate path: Over 5000, 3800, 3200, 4000, 2600, 1400, 972, 1040, 1320, 1090, 2350, 552, 1100, 749, 1070. The big blip back up to 2350 was most likely due to getting blood the day before on her birthday. A transfusion of blood resulted in a big increase in fluids and blood is a very heavy fluid so while the heart loves blood, the big extra dose caused a bit of distress in that narrow window. I cannot convey to you how glorious it is to have that wretched number dropping! I have no idea if it’ll keep going or if it will settle at some point.

Another development is Allistaire’s overall activity and joy level. The girl is coming back to herself! I remember trying to get Allistaire out of her bed after a week in the PICU to have her walk to the door of her room – it was such a great and painful effort. In reflecting back to the days after Allistaire’s transplant and being in bed so much, I knew the sooner we could get her walking again the better. The scope of my abilities to directly help Allistaire through all of this are so limited, but I knew I could help her get moving. So what began as one walk a day from the bed to the door turned into a lap from bed to couch to door and back to bed, three times a day. We kept increasing the distance and the frequency. Thankfully, the Infectious Disease doctors approved the same activity plan she had up on the Cancer Unit which meant we could finally leave the room as it was getting absurd to try to make progress within the confines of her small room. We are now up to a lap around the PICU and Cardiac ICU five times a day. That is equivalent to a half mile a day. She giggles now. She jokes with the doctors and nurses. She plays around in her bed and kicks and seems to have no limitation on her movement.

Last week Dr. Yuk Law, head of the Heart Failure team, was our attending cardiologist. One of my greatest joys has been seeing him watch Allistaire with a look of disbelief on his face. My impression of him, which has been supported by that of others, is that he is a very even keel man. As he watched Allistaire frolic in her bed, he pointed out that she was moving a lot. “Well, yeah,” I thought,”that’s Allistaire you’re looking at.” I then went on to tell him about her progress in walking around the Unit. With a look of surprise, he asked me to clarify that she was, what, out of her room, walking around? Yes, yes, around the unit five times a day, I reiterated. You see, she is literally the only person in the whole ICU who is walking around. He wanted to know if she got out of breath. “Not even a hint of out of breath.” He said he was astonished. He watched to see her as she finished a lap to verify my report. With a dropping BNP and such incredible physical activity, he discussed the possibility of trying to wean her Milrinone, but he wanted to wait for Monday’s echocardiogram.

Flabbergasted. Astonished.

On Thursday, March 5th, two weeks after her last discouraging CT, Allistaire had another. This CT would look for fungus in the sinuses and chest with the hopes that if it were not there, we could stop the Micafungin, which is a very broad spectrum IV anti-fungal, and return the prophylactic, Fluconazole. They would also look at her gut to see the state of Typhlitus. If she was all healed up, they could finally end over 50 days of broad spectrum antibiotics. The CT showed that the sinuses were completely normal and clear. Moving down to her chest, it says the “lungs are clear. Previously noted predominantly sub pleural groundglass opacity and consolidation has resolved. The proximal airways are patent. No pneumothorax or pleural effusion.” Previously noted small right pleural effusion from 2/20/15 has resolved.” Did you get that? Things look normal. Issues have resolved!

It goes on: No enlarged lymph nodes (a common place for her cancer). The liver, spleen, gallbladder, biliary tree, pancreas, adrenals, kidneys and bladder are normal. No pathologic mass identified. Previously noted multifocal bowel wall thickening involving the colon and rectum has resolved. The bowel is now normal. The appendix is normal. What sweet relief! Her whole gut has totally healed, there is no fungus and you know what, even previous evidences of heart failure in her lungs and liver were not mentioned because they are not there! I was so elated! This also meant two more IV meds are done. Over the preceding week, we had begun to transfer IV meds to be given by mouth as she could handle it. As of today the only IV meds Allistaire is on is Milrinone and Lasix. Of course, she takes a total of 20 doses of meds by mouth each day, but a number of these are just preventative.

The other big development is that Allistaire has begun to eat. I joyously charged into Pagliacci Pizza last Monday evening to declare that my girl, who had not eaten in nearly 60 days, wanted cheese pizza and lemon San Pelligrino. She ate with a zeal of old. Then she threw it all up. Too much too fast. Over the last week she’s struggled with nausea but continued to have an appetite, even requesting a hotdog the other morning before 8am. Tonight’s request is chicken quesadilla, rice and chips from Chipoltle. The nutritionist was able to reduce the calories in her TPN (IV nutrition) and get rid of her lipids all together. Over the weekend, Dr. Law decided to have the team completely cut the TPN given that oral fluids have less of an effect on the heart than do IV fluids. I won’t deny that I was surprised and frustrated by this rapid adjustment. Getting Allistaire to eat is a time-consuming and often very challenging, stressful process, especially when it all ends up in being thrown up. Nothing is more defeating. A typical meal requires 2-3 hours of tedious intermittent bites and prompts to drink. By last Friday she was probably taking about 500 calories in a day with a total daily goal of 1,200 calories. So much of it is hoping Allistaire won’t be over nauseous (she is on anti-nausea meds she gets every 6 hours) and strategy – what will give her the most calories that she can also keep down. (By the way, this is not a request for input on this matter. Believe me, I’ve had countless conversations, and innumerable attempts at a variety of options. We are three plus years into this food battle and I admit, advice at this point is not welcomed.) Yesterday the girl got 1,300 calories in. I was amazed!

Today we’ve had to make a few food adjustments due to an “acute kidney injury.” As a result of all the Lasix, which pull off fluids and are thus quite hard on the kidneys long-term, and an electrolyte imbalance, her BUN (Blood Urea Nitrogen), Creatinine and potassium levels have crept up and were quite a bit too high today. Because they monitor all of these levels daily, the doctors are able to catch issues early and make adjustments. A number of meds were held this morning that impact potassium levels and fluid load. Also, I am not giving her milk or orange juice today, both of which are high in potassium. They retested labs this afternoon and thankfully her numbers have trended down now nicely. Most likely she can resume her regular meds tomorrow.

The issue with her kidney’s also prompted a hold on the planned wean of Milrinone, originally set to begin today. Allistaire had her echocardiogram on Monday. It was a bit deflating. Dr. Hong, the attending cardiologist this week, said that while the EF (Ejection Fraction) is up to 21% from 11%, she says her heart looks about the same. We had a lengthy conversation which included looking on the computer at her echo from back in December when her EF was 65%. Of course there was a marked difference. Dr. Hong seemed cautious to not be too optimistic and over-promise. This was where we had a bit of tension. I’m not looking for grand results in two weeks time. I’m looking for a shred of hope that shows she is going in the right direction. I’m looking to take stock of every victory no matter how small. I know it is no guarantee of what will come, but I have to live out these days and I need that fuel of hope to keep me going. Dr. Hong did say that her right ventricle, which had looked fine until the last echo two weeks ago, had improved, as had the function of the mitral valve. They haven’t recovered fully but they are better than they were before. Hopefully this recovery will in turn aid the recovery of the left ventricle. The cardiologists will meet today to discuss med changes including the possible addition of another med and the likely wean of Milrinone, set to begin tomorrow.

I have never felt so weary, so utterly tired. The planned wean of Milrinone will be incredibly slow this time. Last time they weaned from .5 to zero in a week. This time they plan to wean .1 per week, starting at .75 which means a seven and a half week wean to zero, five times slower than before. This is wise because we all want her body to have the very best shot at successfully coming off. Yet, as I calculate out the very, very best scenario it would be three more months until transplant, which assumes the ability to keep her cancer in remission, a successful wean and sufficiently improved cardiac function. This is a lot to assume. Nevertheless, if you add these three months to the 100 days post transplant one is required to stay in Seattle for, we’re looking at a minimum of six more months. I’m packing up my wool sweaters to send home with my mother-in-law, JoMarie. But I’m wondering if the seasons will turn again and again with us still here and I may need to wear them again in this place. Daunting. So very daunting.

Friday was Allistaire’s 5th birthday. It was a crazy, whirlwind of a day, fun and emotional. The point of celebrating a birthday is to remember back to that day your beloved came into this world and to express thanks for each year since. I could never have imagined when Allistaire was born that this fight against cancer would exist, much less so consume her days. Four out of five birthdays have either been in the hospital or under the shadow of treatment. We did nothing for her second birthday but be glad to be home after leaving the hospital the night before at 11:30pm when her last dose of chemo for that round had been given. Her third birthday was spent in the hospital soon after her first relapse, just the two of us. Her fourth birthday was a grand event at home, only two days after she had her Hickman line removed at Seattle Children’s marking the end of treatment but with the looming fear and wonder of what the coming year would hold. For me Friday was a day to be in both wonder and in sorrow. It is wondrous to me that her life has been extended over and over and she is here with us for another birthday. And my heart is heavy with grief that her little girl years have been so constrained. I think of the lives of other little girls and the contrast is so stark – like a sudden punch in the stomach. I am so keenly aware of the fact that this could be her last birthday, that her life ever hangs in the balance. Tears threatened throughout the day.

I also nearly cried as we walked into her room that afternoon. A sweet woman, Libby, from Soul Illuminations, had volunteered to come and take photos of us so we had headed down the hall to the Quiet Room where the visuals are better. When we came back to the room, the bed had been shoved to the far wall and the room was full of joyful faces eager to celebrate Allistaire and see her delight. Sarah from PT (Physical Therapy) came with her parachute and a group was bouncing a beach ball a top the parachute. There was music and clowns and cakes and too many presents and just a whole lot of love. Again I had to hold back the tears – that she would be so loved, so celebrated, that so much planning by the hospital staff would go into making this day special for her, well, it was overwhelming in such a beautiful way. And it was a special joy to have Solveig and JoMarie surprise her for her birthday. Ah, two sisters giggling. There is nothing better, nothing.

When Allistaire was two weeks old I took her to see Caroline, her great-grandmother who was in a nursing home. We arrived to find Caroline in her group time with fellow Alzheimer’s patients. Two of the women asked how old Allistaire was. I told them, “Two weeks.” “Wow, just two weeks,” they exclaimed with ooos and sweet faces of cherishing delight. A minute later they would ask the same question, which yielded the exact same level of surprise and delight. This went on and on. Same question. Same answer. Same response. It was comical in one sense, but I realized that this question yielded a wonderful answer. What about when these same women asked about their husbands who had likely passed away. They had to meet the news of their beloveds’ death over and over, with the same shock and sorrow. It’s not quite the same for me but there is a fair amount of similarity. There is no clear course. I look at a little girl so full of life and joy and exuberance and some neon sign next to her head flashes, “probably not going to make it, probably going to die, don’t get your hopes up.” I look at this test result and hope. I look at that test result and fear the worst. One doctor emphasizes, “kid’s are resilient, they surprise you all the time,” and another keeps a straight face and offers no hint of optimism. I feel flung to and fro, bashing up against this likelihood of death over and over as I swing back around. It is not just a day-to-day existence here but a reality that from morning rise to evening’s setting sun the whole nature of things can change.

No matter how normal this has all become, no matter how cheerily I decorate her room, I constantly meet with shock the dark presence in the room. But I’m looking for joy, joy in the day and joy to come. I am fixing my eyes on the God who counts the number of hairs on my head and who determines each day, hour, minute, molecule, ion. It is His to choose where these days lead. It is His tale to tell. And what is my life anyway? Is it so very essential that I check the boxes I’m told relentlessly make up a good life? My life doesn’t fit into those wee constrained boxes and neither does my God. His ways are not our ways and there is thrill, there is invigoration, there is anticipation, there is leaning into these days. I am on the look out for what He will do. I am on the look out for my God who gave me this small, loving, beautiful, hilarious, strong, feisty, wondrous girl. Thank you Father for the abundance you have given. Thank you for better days and for a glimmer of light.