Stella’s Story

Site created on April 15, 2019

Welcome everyone, we wanted to create a central place where you could both get updates on Stella and send your love to her. I'm sure you are well aware that both she, her parents, and sister have fostered an amazing extended family of individuals like yourselves, and we wanted a place where everyone could connect without inundating Hans and Amy with text messages, though I'm sure they wouldn't ever complain.
Please share this with those in your personal and online circles who know and love Stella so they can join us in honoring her unmatched spirit.


That was written by our sweet peeps way back when this all started and the hope was new and loud. What was to come was not easy nor fun and it ended the way we did not want it to end. But there is yet Stella at the heart of this and Stella is not daunted; she is the core of love and light and through her parents she will keep sharing that love.  This has now become a place to hear Stella live through stories, photos and videos. I, Stella's father, with help from Amy, her mother, will continue to post everyday in her spirit until it is time to direct that energy elsewhere.  


Thank you for joining us here...we probably know you and love you but if we don't know you we probably still love you a lot.

Newest Update

Journal entry by Hans Altwies

Good afternoon friends,

A short story.

 

The flight attendants did not ask me to return to my seat and buckle up as the plane tipped toward the runway of Honolulu International Airport.  Instead, they smiled, stood at the ready and, when asked, brought us hot water in a cup (‘not too hot please’) while the lights of the airport runway, visible through the small window next to Charlotte, grew clearer.

The pilot had already given his prepare for landing speech as we pulled past Diamond head, banked around over the sunken ships of Pearl Harbor and settled in to land.  I was perched on the armrest of Amy’s aisle seat leaning over her, trying to clear the blocked french 8 size NG tube looped around Stella Blue’s right ear and hanging in front of her. The awful, loud, slow beep beep beep beep had sounded signaling a blockage in the feeding tube, again.

Again.

The high-pitched toll meant we had precious minutes to get the solution flowing again before it bonded permanently to the tiny walls of the rubber tube snaking into her nose and down to her stomach; if we failed we had to remove the whole mechanism, a decidedly painful and frustrating speedbump. 

Nausea followed her everywhere so eating food through her mouth was not an option. Amy had managed to invent a smoothie recipe so delicious and packed with vitamins, calories, oils and protein that we could keep her going when she was off the feeds but sustaining this method was not feasible.

The fear of getting the tube re-inserted in the hospital – a process usually undertaken by a persevering nurse well-schooled in dealing with reticent children - was one Stella never overcame. Her grace in death, her peerless strength when her parents were broken, her bodies resilience during the long trial are all to marvel at; with the tube, she was a scared little kid. 

So, this was Stella’s most feared blunder, and it was a blunder we dealt with often and it was surely not the blunder she wanted at the very top of our long-awaited trip to Hawaii to visit her cousins and grandparents.

When I first heard the awful signal from my seat, 4 rows behind, I leaned over to look down the aisle and one row over just in time to catch Amy’s alarmed expression when she turned back to look for me as she turned off the pump, ending the beeping.

‘The syringes are in the bag,’ I shouted down the aisle.

‘I hope you remembered to put them all in there’. She was already digging in the bag looking for the tools of victory. 'We need the smallest one,' she said.  Oh man I hoped I'd put them in there.  I didn't always remember to put them in there.

‘Mommy, it can’t clog now’; Stella had no interest in putting on a brave face.

‘Fuck’, I said out loud. I didn’t care who heard me. The anxiety of the situation gripped my body with awesome efficiency.

‘Get the super small one.’ I shouted uselessly down the aisle.

Traveling with Stella during her sickness was a public affair.  An NG tube is something people don't see every day and so people tended to stare. There was an immediate sense of sympathy mingled with shy curiosity (except for the 4 year old girl who wandered onto our blanket at Columbia City Farmers Market, pointed at Stella from two feet away and said, 'What's wrong with him?').  And when the pump beeped (did I say it's loud?) everyone was aware...and/or staring. Anyway, I was hoping to stay put. The plane was landing soon and I'm kind of a rule follower.  Amy could unclog it as well as I could.  I also wanted to stand up...'just give her a break and don't clog for a hot minute'. 

I stared at the 'fasten your seat belt' sign. I tried to breathe.  

There were a good many medical tricks we'd learned over the year to keep away from the hospital. After experiencing this particular problem turn a normal day into a dreadful 24 hour trial, we willed ourselves to find a solution.  We did…mostly. And yet, every time it happened, we feared Stella’s happiness would fall away and the surliness would roll in.

Amy wasn’t winning, she was dispirited and above all she was worried for Stella.  I’d heard Stella’s whimpers of anxiety and disappointment and Amy had finally told me to, ‘come fix it, please.’ 

'Excuse me.' I moved past my seat mate and walked down the steeply sloping aisle to my sinking tribe. 

When I arrived, the two Delta attendants were talking to Amy with not a word or indication that we were supposed to be sitting, buckled in our seats. One, then dashed off and got the precious cup of warm water; the other stood by as I sat down and took the syringe from Amy. 

There were no tears on Stella's face, but she was starting down the road of frustration turning to shotgun anger; when I told her I’d get it, she shut me down with something like, ‘we’re going to have to take it out’. When Charlotte offered her a hand on her arm she jerked it away.

I told her I’d clear the line. I told her we wouldn’t have to pull the tube. I told her if I couldn’t it would be fine, anyway; ‘Maybe we just keep it out all vacation', to which Amy correctly responded, ‘There aren’t enough smoothies in a day.’ 

Throughout her illness I reminded Stella that getting tight and anxious would not help a tense situation; but the panic could be softened with just a few deep breaths; easy. I usually managed to gift this sage wisdom during an acute moment of fear and anxiety…so, of course, it never took. With all the eyes watching us on this day I didn’t give it another go.

Placing the small tip of the tiny syringe into Stella’s port which hung loosely off her ear, I pushed.  Our second least favorite thing happened: I pushed too hard and the syringe blew out from all the pressure against the unmoving blockage and sprayed out all over, covering us with the odoriferous, brownish formula.

‘Daddy!’

Big wide, incredulous eyes at me. Could I have made this more horrible and more embarrassing?

‘Hans!’

‘Sorry…sorry, shit, sorry. I’m trying.’

Amy wiped us all up, wiped the seat and asked for more water.

Then Charlotte broke through with a good one liner - I wish I could remember it - Stella broke open like a crocus and we all sighed and were silent. Amy put her head back, holding one of Stella's hands and closed her eyes in meditation like she does, Stella stared at my hands working the syringe, Charlotte filled Stella with her positive thoughts and all of them in their minds willed me to finally push it through.

After going through two full cups of warm water, landing with a soft bump in Honolulu and taxiing for a few minutes we were still at it: pushing as hard as I could on the thin plastic stick of the 2.5 ml syringe, trying to keep it from bending, trying to keep it from spraying all over again, refilling it, trying again, it hadn't budged. There was a resistance it gave me sometimes that meant we were done, and it seemed we were at that dismal point again.

How many of these tense moments did we endure/enjoy/succumb to from April 13th through February 14th?  How many times did we sit there and want to scream at how hard and absurd our situation was?  How did we get so unlucky?  I don’t know any of those answers, but from this vantage, 2 years later, I’d give anything for one of those exact moments now; to be back in time there, to touch her and smell the Liquid Hope solution, and hear her voice, whining or not. Those packed, tight, painful moments are the stuff of our dreams now...if we're lucky. All of us there, in the moment, each trying to be good, to fill the others with some sort of success, relief…and so often failing. Never giving up but so often failing.

I tried one last time, pushing slowly and firmly, trying to feel the molecules moistening and sliding along the walls with one last extra-thoughtful pressure.

And suddenly it slid and released and we were clear.

Well, how about that?

Stella was immediately brighter, chipper; she started talking a mile a minute zipping all over the place.

‘I hate this thing!  Thank you, Mommy, thanks Daddy.  I knew you would do it…I mean I didn’t know for sure you’d do it but … but I knew you could, maybe, do it...-I mean—never mind’, and the silly laugh that followed when she spun out with happiness. 

Oh that sweet relief.

Amy gave me a bigger syringe and I pushed a bit more warm water through the NG tube until she told me she could feel it in her tummy. Amy started up the pump again and ran some formula into the empty cup to make sure there were no chunkies left in the bag-end of the line before we attached it to the pink port of her NG line and started it up, this time with the preferred starting sound, the glorious triple tap: beep beep beep.

We poured our gratitude on the two attendants who broke all the safety rules so easily for us. I went back to my seat.  We were finally in Honolulu and we could all relax.

 

Ten hours later it clogged, and we couldn’t clear it and we had to pull it out.

 

I'll tell that story another day.

 

***

 

This video I made on January 2nd 2020.  In retrospect it was the happy times; Stella was in a rhythm of being a patient and yet we were at the tail end of it all.  We'd had last call for Chemo, school was starting in mere days and things were looking up...'all clear'. 

But I never answered Amy's question in the video about why I was making it: Dealing with the bag, the Liquid Hope solution and the clogging of the lines was a primary task of our lives during this year. It had taken us countless hours and failures to get it right. I had looked everywhere for a video showing how to do it but had come up empty. So, I wanted to make a video to put on Youtube titled, 'changing the liquid hope bag' or something much better than that in case some poor parent or nurse could glean what we did through our on-the-job efforts; this was my first attempt that would - of course - be redone, better and probably with Kaleo's help as videographer and director and much editing. Obviously we never got there.  

Anyway, in this video you can watch the task of refilling a gently used bag (we changed them once a day...so 4 uses usually) or, more importantly, get a glimpse of the Star Blue at the end of the video on a typical-for-that-time evening, post Wabi Sabi sushi, before a game of Boggle or banana grams with the family. 

 

Love.

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