Elowyn’s Story

Site created on September 3, 2022

Welcome to Elowyn's CaringBridge website. We appreciate your support, prayers and words of hope and encouragement. Elowyn fought bravely for 13 months, supported by thousands of family members, nurses, doctors, prayer warriors and well-wishers around the world. Elowyn taught us how to love generously, live bravely and emanate joy vivaciously. We are honored to have been beside her every minute of this journey and miss her tremendously. 

Ways you can help: 

* GIVE BLOOD or PLATELETS: Sign up with your local blood bank to donate whole blood or platelets 
* If you're expecting a baby soon, talk to your healthcare provider to discuss donating cord blood to your local hospital or cord bank
* Consider making donations to one of the following: 



- Mary Bridge Children’s Hospital: Pediatric Cancer Care (https://give.multicare.org/impact-areas/pediatriccancercare/) or Childlife Amazon Wishlist (https://www.amazon.com/hz/wishlist/ls/FDAD3AUPEPW3/)
- Seattle Children’s Hospital: Research Discovery Fund (https://give.seattlechildrens.org/give/284150/?utm_campaign=redir-chx&utm_medium=redir&utm_source=online#!/donation/checkout) or Childlife Amazon Wishlist (https://www.amazon.com/hz/wishlist/ls/IOGHMJJL6JQW)

Note about "tribute" donations or donations made to CaringBridge: Due to the amazing support and generosity that our loved ones have been showing, we want to clear up some confusion around "tributes" vs donations. To clarify, "tributes" go to fund the CaringBridge website, which is a worthy cause to keep the site online and free to use (and ad-free). However: if you intended to help our family directly, please make donations to Paige via Venmo (@Paige-Walthall-1) for food, gas, and other incidentals during this year of treatment. If you made a tribute donation to CaringBridge unintentionally, you can call into CaringBridge (651-452-7940) and they will refund the donation.


Brief timeline of Elowyn's Journey:

Admitted to Mary Bridge (MB) September 1, 2022
Diagnosed September 3, 2022
Central line installed & First chemo September 4, 2022
Released home September 25, 2022

Readmitted to MB for more chemo October 3, 2022
Released home November 3, 2022

Readmitted to MB for chemo November 9, 2022
Released home December 9, 2022


Baptized at St. Charles Anglican Cathedral, December 11, 2022

Moved into Ronald McDonald House December 14, 2022
Admitted to Seattle Children's December 24, 2022
Bone Marrow Transplant January 3, 2023
PICU for VOD January 14, 2023
Dialysis January 22-24, 2023
Out of PICU January 25, 2023
Released 'home' to Ronald McDonald House February 13, 2023
Admitted to SCH PICU for bacterial infection March 17, 2023
Released 'home' to Ronald McDonald March 28, 2023
Released to real HOME April 15, 2023

Celebrated 1st Birthday at HOME May 4, 2023

6-month post-transplant Bone Marrow Aspiration and discovery of relapse July 10, 2023
Readmitted to MB July 12, 2023
Released August 17, 2023
Readmitted to MB August 23, 2023
Released home September 3, 2023

Readmitted to MB September 6, 2023
Transferred via ambulance to Seattle Children's  PICU September 27, 2023

Heavenly Homecoming 4:15pm Saturday, September 30, 2023. 

Newest Update

Journal entry by Paige Walthall

Today, being Good Friday, I thought it made sense to reminisce about loss, love, sacrifice, all the things you probably associate with Good Friday. 

To be honest, we haven't been back to a church service since Elowyn passed away. Somehow it seems wrong for me to go to church when she can't come with me. It's something I'm still working through. Holidays have been hard for me because there's usually a church element to them. One of the last times we went to church was last August when Elowyn was with us (home from the hospital between chemo rounds after her relapse). The pastor of our church was preaching his last sermon with our congregation and there was a 'farewell' gathering after the service. We were cautious to bring Elowyn out into public because of her weak immune system, but we did show up after the service-- it was a beautiful day and we were able to say 'best wishes' to our friend and his family who also baptized Elowyn the winter before. I believe this was the last time I was at our church. 

This winter, Kevin and Maggie and I flew to Germany to stay with Elowyn's godparents, our good friends who have acted as our mentors since before we were married. They opened their home to us-- our broken spirits and tender selves-- and helped us get through the first Christmas without Elowyn. We went into a few cathedrals on that trip and I had trouble inside each. Particularly the cathedral in Cologne where there were hundreds of remembrance candles lit. I walked in and walked straight out, just overcome by the notion that Elowyn is a memory candle to be lit now, no longer a little girl with a physical body, a sweet smile and bright eyes. From dust she was, and to dust she returned. 

I remember last Easter. Elowyn and I were at Ronald McDonald House in Seattle and Kevin and Maggie were home in Poulsbo to celebrate with our extended family. They attended services and enjoyed an Easter egg hunt. They decorated the cross with flowers and took a photo-- the same place we had taken a  family photo the year before... when Elowyn was still safe and sound on the inside... just a few weeks away from her birth. Last year, Elowyn's NG tube came out in what we lovingly referred to as 'an incident'. I had to grab another caregiver mom in the apartment below us to help hold Elowyn while I replaced the tube.  I couldn't get any stomach content to check if I placed it right, so I had to walk Elowyn down to the Emergency Department  to get an x-ray to check placement. It was such a mundane, yet eventful, Easter day, and I'm sorry it was Elowyn's only Easter. Looking back, I wish it had been so much more for her. 

I honestly don't know what we will do this year. Our plans these days are usually to see how we feel in the morning and make somewhat spontaneous plans as we're able. It's sorta working for now, so we'll go with it. 

Saturday, March 30, is the 6-month anniversary of Elowyn's passing. 6 months ago was also a Saturday-- a bright blue sky day in September-- simply brilliant. We'll have a few friends over to hunt for hidden Easter eggs around our yard. We'll honor the Easter that Elowyn didn't get to have-- I KNOW this is exactly the type of thing she'd be simply delighted by. Seeing her people, looking around for pretty bright-colored things in the yard. Discovering treasures. We'll honor her by sharing that delight with others. 

We still covet your prayers. It's a huge blessing when folks reach out to tell me they are praying for us, or that we were on their mind. It means a lot. It might feel like a small or insignificant gesture to you, but even knowing that folks still think about Elowyn, that her memory is still alive for them-- that blesses us immensely. I don't have specifics to pray for because grief isn't just one thing. 

 

 

For work this week I had quite a bit of writing to do, but I found I wasn't able to write until I emptied my heart of what I'd been thinking about Elowyn, knowing it was coming up on 6 months without her. I'll share it below. 

____________________________________________

How has it been half a year since I said goodbye? How is it possible that the world continues to turn? The sun continues to rise, and life carries on for many around us, when we are buried deep in a pit of despair. It isn’t fair. We weren’t promised tomorrow, but we so desperately wanted many more tomorrows with you.

I so clearly remember the night before you met Jesus. These are the moments I relive in my head most nights as I fall asleep, little pools of memories spill out and over onto my pillow. I’m curled up on the bed feet away from you, looking at you with all the tubes and lines and wires keeping your little body alive. I had so many decisions to make that night. Give the green light to administer some drugs to help reverse the HLH complications that was making your body stop producing blood. Those same drugs would take you out of qualification of the drug trial we so desperately hoped would give you a second chance at remission and a second chance at a transplant… a second chance at life. Your tissues were filling with so much fluid, you were almost unrecognizable to me, as your own mother. I worked for hours with various specialists asking if there were other ways to get your symptoms under control, dancing around the words I didn’t want them to say to me, “There’s nothing else we can do”. I didn’t want to go down the road that so many other families had… their babies in states of prolonged suffering… trying everything they could to turn things around. “Give me more time.”

I wanted more time, of course, but not like this. It was wrong to ask for more time when I saw the state you were suspended in. When we gave you breath, we gave you rest and your body said, “that’s enough for me”. I want so badly to know that I honored you by letting you go.

Your nose was one of the few things that didn’t change—through everything. I focused on your sweet nose—perfect little nose that wrinkled when you smiled so big. A little nose that flared a bit when you were frustrated, or when we had to put a new NG tube up and in. You always had the softest, most perfect skin. Cheeks that were irresistible. I believe your daddy and I planted a lifetime-worth of kisses on those sweet cheeks in your short time we got to hold you and call you ours.

I move forward each day holding many truths in my arms where you ought to be instead. I’m so terribly sad and in deep pain. I’m grateful to have known you, learned from you, and loved you. I’m proud to be your mom. I’m heartbroken for the lost sisterhood between you and your big sister. I’m relieved there are no longer nights in the hospital with you in pain and our family adrift.

It’s so hard for me to hear your voice or your laughter in one of the thousands of videos we captured of your joyful presence. I trust it will get easier, to reminisce, but for now I just miss you, my little sweet girl. My Elowyn.

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