“Just give us a number,” Amy said.
Two minutes before this demand of Amy’s we’d joined to Dr. Wu on the grieving couch, while Brad and Joel stood silently on the other side of the partition in the lounge of the Ocean 8 HemOnc in-patient unit at Seattle Children’s Hospital, on April 16th 2019. At this critical moment, 3 days after walking into the emergency room for the first time, we knew Stella had cancer but we didn’t know the magnitude of the illness nor her chances of survival but Dr Wu was just about to give us the official diagnosis for the first time.
“Stage 4, alviolar rhabdomyosarcoma,” she said.
We nodded. Maybe we looked at each other.
‘Ok,’ I said.
I guess we knew already, they’d mentioned this was most likely the diagnosis though we hadn’t heard the staging. I know we didn’t know what it meant in the moment. We were calm, we listened. Dr Wu talked a bit more, told us stage 4 meant it had metastasized, she also said the bone marrow results were negative, that was the one piece of positive news so far. She informed us of the next steps and how the chemo regimen would be administered and for how long and we listened, pretending we understood, THINKING we understood, but knowing so little. She also told us how the cancer was in a place that wouldn’t allow surgery, but that Dr. so-and-so would double check.
“Ok, what does this mean? What are her chances?’ Amy asked.
“Well, I like to think of it this way: every patient is patient zero,” said doctor Wu.
‘Oh, I like that’, I thought. ‘Yeah, let’s look at that idea some more: Stella Blue, patient zero; no one has ever been Stella Blue with cancer! Have you met Stella?’ I was positive-spinning.
Hope. It’s an effective tactic for parents. ‘Our girl will be different’, you think. ‘Right, so much is unknown, so many things could happen, ANYthing can happen.’
“What does that mean?” Amy was staying on task.
“Sometimes a child with a low chance of survival, survives; sometimes a child with a high chance, does not.” Dr. Wu said this with an odd combination of confidence and lightness.
‘Exactly’, I thought.
Dr Wu continued: “It’s going to be a journey, it won’t be easy but—“.
“Just give us a number … we want the truth,” Amy interrupted.
Dr. Wu balked, “Well, that’s not…”
“Just give us a number.”
It’s what I wanted, I can tell you that now; but I was just being polite, letting the good Dr. spin her yarn. But in my heart I didn’t want this protecting speak either, the kind you know you’re being given as a way of training you. I wanted the truth too, now. Bizarrely, what followed for 10 months was a fascinating combo of hope and doubt and I cannot know if it would have been different had Dr. Wu never answered.
Dr Wu paused. Amy had nailed her down, I think she was startled by the request; maybe they’re not supposed to use the straight language. Whatever the case, she was reluctant. I could hear Brad and Joel hold their breath behind the partition.
Dr. Wu looked at us squarely and with effort said, “Less than 20%.” I heard Joel gasp and Amy dropped her head into her hands.
February 15th 2020,
Amy had a harder day than I did. I was busy, planning, wiping her bleeding eyes; Amy lay by her side holding her hand already grieving; she kept our girl cozy, welcomed Spunky onto the bed when she visited, talked to Stella, cried. Her wave was big-swelling sadness and longing for the past and my wave was low, low tide at Manzanita … the tide will rise again I knew, crash over me but, for the moment I was … I was ok … it was inevitable I knew and I think I felt a bit of relief for her.
We listened to Brother Iz and Hamilton in her room with the family that night. It was somber, low, terrible, but also had an air of ceremony. We were in shock; no one saw this coming, this halfway state of hers … then again we had no idea what was coming. We talked about how much she used to love singing Hamilton on the way to the hospital or radiation when her nausea was too much; the singing distracted her and charmed us.
I wrote on the day: I’m sitting here at 2:51 am on Feb 16th and Stella Blue, the super nova of energy and magnet of love is still breathing remarkably calmly and consistently and has been for 40plus hours.
Her body is not hers anymore, but it is the tie-line to being in the room with each other, which Stella wants…she wants it for Amy and I to be together yet. We assume she’s floating above the bed just under the upper loft, listening/watching; we assume she’s watching us staring at her old body, watching us begin the grieving, holding on a bit longer so we can be with her warm body a bit longer.
The number of people that love her and who have sat in/laid in/snuggled in bed with her, who have been in her room and witnessed her, who have come in and out of the house because they love her, the number is unknown but feels endless. The beauty of this community is beyond my understanding. The love…
… for the abyss that it hopes to fill. You can sense the momentum of the pull downward building behind the gestures of love, notes, gifts, food that crushes into our house and I’m clear it may save me from the abyss; the love will fill the abyss up and float us back to the living and lay us gently on the soft ground, soaked but safe … because love is a shapeshifter, and is felt as large as it needs to be felt.
I’m sitting here on the bean bag wide awake at 3 am because I’m afraid to go to sleep. If I do I may never see her alive again and that terrifies me. What is it about life at this point in her journey, knowing what I know of her awareness, comfort level and direction of health, knowing I want her to leave her pain behind, why, why is it so terrifying to me that she let go?
I will never hear her breath again. That’s it.
Everything else has already happened: she can’t move, communicate in any way nor will she ever again be able to. She’s just making a two to three day (longer) pause before she moves on.
God, please let her not be in distress.
I’m just afraid of her not breathing. The last breath out. No breath after.
I lay down on the bean bag, head on my right arm, staring across the dark room toward the bed where Amy and Stella sleep.
I’m afraid of falling asleep because when I wake up she may be gone.
I awoke four hours later to Amy yelling:
“Ants, there are ants all over her!!’
I leapt off my bed.
We’d been battling ants in our house for a long time. Four days before, our ant company had come out again and made a second pass around our house. The tech thought he had found a nest outdoors, on the south side of the house under Stella’s second story window as well as inside in many places.
It hadn’t worked yet, and we’d asked him back, ‘spray everywhere’ were my words to which he calmy replied looking at me with a blank stare, ‘We can only spray where we see them.’ I looked at the ground: ‘Well then look down, and start spraying,’ I‘d said.
Anyway, he did his best; but before he left that day, he told us the ants might run crazy immediately after spraying and for up to two weeks after.
What I saw on the morning of Feb 16th at 7:30 am when Amy was desperately yelling, “Ants! Ants! They’re everywhere!!”, was Amy frantically wiping ants off our sweet, comatose girl; they were on her still, warm face, on her crusted eyes and I saw one dart out of her nose when we started brushing her face.
I told Amy to go get Nona, but she’d heard the yelling and was there in an instant.
They had come for the protein; we’d learned this from the ant guy…not sugar, not salt but protein. For the blood on her eyes and in her nose where the tumor had started growing into her nasal passage. They can swarm when there’s a source of protein and they were.
Justin, Kristine, Nona and I lowered Stella to the floor and began moving the furniture and creating space along the window where they came in; they had used all the pillows in her cushy bed set up as a bridge from the window onto her mattress and then her.
We were able to clean her body as well and resituate the comfort queen onto her bed; the comfort and softness that she craved so much during her life but had been so impossible to come by during this storm of pain and nausea…poor girl, Jesus. Now we were tending to a body that couldn’t tell what was happening at all, or not in the way we were familiar; we didn’t for a second pretend she was gone.
What followed was a calm day - and recovery from the burst of adrenaline and horror of the ants - and Stella breathing evenly for 29 hours straight.
‘How strong her body was,’ I think now; and while we watched her that day and waited, ‘how strong her body is,’ I wrote.
How strong? This strong:
Sue Ehling, her besty Nurse Practitioner, the caretaker she saw the most and trusted the most, said to me at the beginning of her treatment, ‘I would say it’s 100% going to happen but nothing ever happens 100% of the time so I won’t say that, but everyone, and I mean every child undergoing chemotherapy ends up in the in-patient ward during treatment.’
Stella did not. Not once.
No fluid drama, colds, fevers, pneumonia … nothing. And her cancer grew in the middle of treatment requiring emergency radiation at a high rate and dose and a complete abortion of the initial chemo treatment and the switch to a newer one that was supposed to cause diarrhea that she also never got. ‘Irinotecan is commonly referred to as, ‘I-run-to-the-can’’ said Sue; diarrhea can lead to dehydration, so they gave us anti-diarrhea medicine. She never needed it. She was never ill beyond mild temperatures and her temperature never went above 101. Her blood counts were always good. Her body was healthy. It was, statisically, miraculous how healthy she was for a stage 4 cancer patient.
We sat with her throughout the rest of that day and tried to find the thoughts and words that helped us.
She’s burning off the earth, says Thornton Wilder.
Or the love, says her bud Talullah. She’s burning off all the love.
Or she’s waiting to kill the cancer before she dies.
Or she’s watching us all get started on our grieving and she’s running the show, thought several people, helping us through the early stages.
Josh pictured her mind/soul was pulling back like a bow, further and further getting taught and ready to launch.
Her spacesuit was broken and we were tasked with taking care of it as far as Stella’s humility wanted.
I wrote: We are grateful she gave us all this time to be with her in this calm, soft way. If we had to do it at all, this way carried a short pause we needed. For us … and this is one of the hardest parts of the love equation … her passing/reorganizing/freeing seemed without distress, pain or other sensorial discomforts, at least after the 13th. Stella was once again giving the absolute best a human can give by letting us quietly be with her as she slowly disappeared.
February 17th, Amy’s birthday. A beautiful day outside and made more so by our friends in the house below. There was a Monday Night Dinner in the front yard at the King’s table. Sam and Megan played her favorite music out in in the yard.
A large group filling the house with love. Some of the laughing from below felt callous at times, but was also a reminder that though this was an impossible event for Amy, Charlotte, Kaleo, Kathy, the exact quality of the weight of the event isn’t for one person to decide; how do we honor her? In our own, individual way, each of us. We kept the room and house mostly silent for many days at a time…but…her community can laugh, should laugh as well as grieve.
Stella got to hear the music of her soul, Sam and Megan, Misner and Smith playing the music of our family; she heard friends talking around the fire outside, the people who loved her, who lived for her downstairs murmuring and holding the house together.
Her breathing a sign that, regardless the fragility of her tether to this world, it was still unbroken.
I started to fantasize during this quiet day; and I’m only now, not ashamed to say: I believed quite strongly that she might be able to recover; that she had become transformed, and Deadpool style, would awaken as a different species. I really did…I thought that would happen … for about a day. I regressed … I was bargaining.
She is still breathing consistently and calmly.
What’s keeping her alive?
What is that thin tether?
What is she breathing for? It is some form of living but what?
How long will her little body, with no water or food (4 and 7 days respectively), continue to navigate the diminishing of her life.
On February 18, 2020, 4:09 am, Stella Blue Summer Altwies went free into the early morning air.
Amy was lying next to her on the window side of the most comfortable, unthinkable deathbed, and I was on the bean bag in the corner of the room under the corner windows; both of us sleeping in the new shallow way we’d learned over the last year.
We had been on alert for four days now, waiting for the moment we knew and feared was coming; knew … we knew our daughter was dying for three weeks. But we knew nothing. ‘Knowing’ what you cannot bear to imagine happening is an awkward exercise, an experience more dreamlike than conscious.
Amy told me afterward she had been watching Stella for several minutes, after being awakened by something, no noise or other sound … she said she just knew to wake; that’s another type of knowing; that one comes from the base of your spine.
She woke and leaned over her daughter to see her face, resting her head on her right hand; Stella’s breath had slowed, and Amy wondered again, as we had for days, if it was time. It was routine that her breathing would quickly change to rattled or gurgling breaths only to even out and return to the normal breathing of her new state: five or six breaths a minute, heart racing, hot as a fevered one.
This time Amy thought the same, but a creeping feeling seeped in; she leaned in closer, hovering directly above her daughter and watched closely for signs.
She called my name seconds after she leaned in; I was already awake and by the bedside before her words completed their journey from across the room to my sleeping brain.
The moment bent time.
I stared down at my girl, my Stella Blue Summer Altwies.
I waited for the next breath.
What came next was the smallest breath possible. A tiny, barely-there breath that diminished so delicately and so seamlessly into no breath at all we wondered if it was happening.
If we were breathing at all, we were matching her depth of breath and silence.
The first, small breath left her still mouth so subtlety and with so little force, we were pulled toward her further, amazed at how small life could be before it was extinguished.
I was aware how quiet the room was, how quiet the world outside was.
We waited.
There was no audible intake of air, and her body was perfectly still. Had she taken another breath?
An endless pause. I was frozen … nothing but the thought: breathe again.
She had breathed in.
The next breath out seemed just as the one before, a bit softer than the feather breath before it but it ended a bit lighter. There was sure to be another.
Amy and I were perfectly still. We waited for the next.
Had it finally happened? The last four days felt like a year, her body kept breathing despite no water or food or movement. She was in a coma we suppose. Is she aware of this in any way at all? What would they have been doing to her had we been in the ocean 8 hospital room? Would we have been able to share this world-shaking time with her with this closeness and calm? Surely, she would have been attacked with a defibrillator … maybe not. But would her body have been calm like this? At home, her mother and father inches from her, her cat with her?
The next breath didn’t come. We waited; we stole quick glances at each other but didn’t want to miss any tiny movement so looked back at her.
We waited.
The next breath never came. Yet for a good minute we were sure it hadn’t happened; she’ll breathe again, we thought, your daughter doesn’t stop breathing…it doesn’t happen.
The next breath never came.
The next breath never came.
She was done living.
Stella Blue passed like a soft whisper, the little hummingbird, just the softest seamless end after such a brutally painful, complicated, alarming and nauseating 10-month ordeal.
The sun was not yet up. The wind was very still. The house was still. Stella was still. Amy and I were still.
Now gone, it seemed the whole year had evolved and resolved in a minute.
Time expanded back to normal soon after when my mother came in … the world doesn’t even pause when someone dies. But Amy, Charlotte and I were now slow motion actors on a whole new planet of our own.
Justin said later he imagined her ending like a solitary sea bird coming in for a perfect landing on a lake as smooth as glass.
Nona, stood in the room soon after and watched with tears streaming down her face. Stella was much like her, fierce and excessively concerned with the rest of the world. How wrenching for her to lose her shining granddaughter Stella.
For me … what did I feel?
Those last three weeks, from the pivotal moment of January 27th when we lost all the hope, when I crashed to the ground … from that moment I was falling.
But instead of hitting the ground and feeling a new beginning away from grief, I feel less … of everything and I still do today.
In truth we couldn’t have asked for a less painful reorganization (Amy’s word for dying) given the horrific situation…given the demonstrably terrible state of living that led up to her last breath.
As far as we can tell she had an event on the morning of the 14th that put her brain to sleep, an aneurysm. A traumatic embolism or bursting of an area in the brain from pressure? Whatever the reason we think she didn’t feel anything after that. We desperately, desperately, desperately hope she didn’t experience ongoing pain. I cannot dwell on those crazy-making scenarios of what she might have felt in those critical moments while we slept, when she lost consciousness forever … I try not to dwell; so I say my fears here only in hopes it stays locked here only, out of my head and not true, but here trapped … not true.
What I want to believe: her spirit her soul, floating above the bed or around the house during the 4 days of pre death, could feel the love, hear the talking and music and see with her new eyes how much we already missed her, that we were trying to go forward and most importantly, because she would care, that we her immediate family was well taken care of.
I wrote on February 19th.
We have had Stella’s body on dry ice, on her bed, dressed in her favorite clothes (picked by Lili and Char) including her rainbow socks, since this morning. Josh and Kaleo helped orchestrate how Stella’s body would be kept cool. She is of course holding Boo, her favorite stuffy, under her cold, beautiful hands; burrito dog (gift from Maile), 5 angel cards, 4 bracelets, a necklace also rest on her chest, and this, all wrapped in a beautiful, soft blanket sent from Jenny Sue.
She looks like an ice princess with bluer than normal skin, sharp features – sharper now as the tumor keeps dying and her original bone structure is revealed and the moisture in her body evaporates - and of course, no rise and fall of breath filling her lungs and flowing back out; she’s gone from looking bruised and bloated and discolored to perfectly smooth, still with crusted eyes (we couldn’t remove this excess for fear of opening up more leaking and gore) and clear unblemished skin.
Stella Blue Summer Altwies: she is all the way gone and it’s as if the whole earth is on a new trajectory.
I’m three years, seven months removed from the event of Stella’s death and the days afterward we spent with her body in her room. The time itself was the singular time of my life, more filled with the stuff of humanity, fear, emotional pain and trauma then anything I’m likely to experience again (please not again); but looking back from here I also think of it as the time I want to revisit more than any other time in my life.
Of course I also want to be with 3 year old Stella,
7 year old Stella,
8 year old Stella,
9 year old Stella,
11 year old Stella,
12 year old Stella,
13 year old Stella,
And 13 year old Stella,
But I would give anything to be back in that room in February of 2020.
All of the Stella ages mingle in me at once, bring me joy mostly, make me slow down, remind me of what to choose when I can’t decide, give me a third eye when I’m breathing deeply enough for her to be there.
It didn’t matter what the percentage was of course, I see that now. But you don’t know what you don’t know and I didn’t know how to be present in this world until I heard that number.
Thanks for reading.
I'm in awe of the clarity you've brought to this journal, the way you've dissected, presented, and sought to understand the most painful and tragic moments of your life. Your love for Stella and the rest of your family shine through. I hope the effort of pouring your soul into this and sharing it with the world allows you to go on in the most meaningful way possible. And while it feels like a small thing to say about so personal a document, I admire you as a writer as much as I always have admired you as an actor.
Thank you, Hans for sharing.