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Katja Marek, Kamloops, BC (2026)

06/27/2025

Jaeger turned 5 last week! 🎂
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This week we had a 4-day turn around to BCCH for his quarterly MRI, oncology consult, and an unplanned ophthalmology appointment. The great news is Jaeger is still NED (no evidence of disease, at this time).
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His dental issues are getting worse, so we stopped to see when to expect his dental surgery. He’s to the point that he’s not wanting to eat, due to pain and has started loosing weight. After sharing this information, we now have an August surgery date, perhaps even sooner if we get a cancellation. You may see him with some little silver teeth soon.
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While in Seattle last summer for proton therapy, Jaeger received a special card from .braverycards while we were gone last week a birthday card arrived to help Jaeger celebrate being 5. Thanks Becca!
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We have been questioned a few times about Jaeger’s treatments, the most asked question is this: If he has brain cancer, why is he not receiving chemotherapy? The long answer short is, there are so many types of brain cancer. Jaeger’s is Ependymoma, specifically: Supratentorial Anaplastic Ependymoma WHO Grade3 ZFTA-fused. Ependymoma are Central Nervous System tumors, that occurs more in the spine in adult, in the brain in children. They are considered a recurrent type of tumor which does not respond to chemotherapy. We hope and pray that Jaeger will have clear scans for years to come.
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We’ve had so much support and financial help from so many caring and concerned people out there, some of whom we have never met, but needs continue to present themselves. If you would like to help with our ongoing needs, our Go Fund Me is: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]
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06/12/2025

Due to changes by Facebook this page is now dedicated to Katja Marek - designer.

My personal page will revert to being strictly personal.

02/04/2025

It’s World Cancer Day

69 Weeks
483 Days
11,592 Hours
695,520 Minutes
41,731,200 Seconds

1/3 of Jaeger’s life!

2 Craniotomies
33 Proton Radiation Treatments under anesthesia
Countless Scans
& MRIs
& hospital visits
& doctor visits
& minor adjunct surgeries
& meltdowns
& tears
& GRIEF

The journey without an end!
The terror and devastation!
The financial hardship!

If you feel moved to help us with our financial needs our Go Fund Me: go fund.me/77d4d18c or Email transfer to: [email protected]

Thank you to everyone who has helped us so far 🧡
We could not have done it without you.

12/26/2024

As the Christmas season draws to a close and a new year approaches, I want to wish everyone the best of the season with some retro artwork by a 7ish year old me. 🎄
This past year has seen many struggles and challenges in our lives.
When January started we were all still firmly entrenched with the idea the Jaeger’s tumor was ‘just’ a benign low-grade glioma.
In February we learned that Jaeger’s tumor, resected in October 2023, was growing again.
In March I closed my business of 25 years, Katja’s Quilt Shoppe.
In April Sonja and the 2 littles moved in with my mom and I, meaning we now have a household comprising 4 generations.
In May we received the devastating news: “We’re very sorry but Jaeger’s tumor pathology has been determined as ‘Supratentorial Anaplastic Ependymoma Grade 3 ZFTA-fused’” and a second craniotomy was performed.
In June Jaeger turned 4, amidst a hectic month of running around to get Passports, and attempts to organize our lives for extended stays away from home for treatment.
In July and August we were in Seattle for Jaeger’s Proton Radiation treatments. Words cannot express the emotional rollercoaster of traumatic experiences during that time.
September saw us come home, try to settle back into new routines, seek counseling, and for Sonja and the littles to make their downstairs space into their home.
October brought the 1st Tumor-versary, and Jaeger was accepted for a ‘wish’ through Make-A-Wish Canada (BC & Yukon).
November Sonja returned to part-time work, while trying to juggles the needs of a medically complex child.
December, it was a struggle. Jaeger received a ‘clean’ scan. I learned the term NED -No Evidence of Disease. Do not confuse this with remission or cured, those do not exist for Jaeger, NED just means the brain cancer cannot be found AT THIS TIME.
Financial pressures continue, with reduced work hours while trying to meet Jaeger’s need, medical trips for assessments/treatments, medications, etc
If you feel moved to help, we appreciate your support:
Go Fund Me: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]

10/13/2024

ONE YEAR - one whole year has passed since that fateful day in October 2023 when we first heard Jaeger has a mass in his right frontal lobe, on his motor strip.
At the beginning it was thought he had a low grade glioma, but the final pathology/diagnosis of Supratentorial Anaplastic Ependymoma Grade 3 ZFTA-fused has been a hard pill to swallow.
Now we wait with angst for an MRI every 3 months. We pray that blips in his behavior are just Jaeger being 4, and not as a result of his brain injuries.
The stresses of this past year have taken their toll as we have learned to cope. It was recommended by his Seattle medical team that PTSD counseling would be prudent. But we persevere!
Jaeger has been accepted for a ‘wish’ through Make-A-Wish Canada (BC & Yukon). He will be assigned a wish coordinator to help develop his wish.
In the mean time life goes on and we deal with it as it comes up.
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Needs continue to present themselves, and we thank everyone who has helped us in the past. If you would like to help with our ongoing needs, our Go Fund Me is: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]
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09/15/2024

We are home 🧡
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Now we hope and pray that the tumors don’t come back, but only time will give us answers as to whether treatment was successful. Jaeger’s medical team was positive in their outlook, but we have yet to hear from neuro-oncology.
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Our Go Fund Me eased our struggles through the past 11 months, and without your help I’m not sure how we would have managed. Mentally, we continue to try to come to terms with Jaeger’s diagnosis, plus I believe we all suffer from PTSD related to all the events of the last year.
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If you would like to help with our ongoing needs, our Go Fund Me is: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]
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08/26/2024

The end of August approaches, and with it the end of Proton Therapy (Jaeger’s last session is Thursday - graduation/bell-ringing day).
Along with daily (Monday-Friday) radiation treatments we’ve tried to squeeze in a bit of enjoyment. Among these were: a ride on the merry-go-round and visit to the Point Defiance Zoo, a visit from Grandma Becky, who brought new Spider Man PJs along with other goodies, a trip to Karen and Casey’s, where slug hunting was top of the agenda, a visit to Station 38 of the Seattle Fire Department to thank them for their service when we needed them, a dragon face-painting, and a new-to-Jaeger scooter (often things are left behind by families heading home for others to enjoy). We also visited the space needle, the troll under the bridge, and had a Soulumination photo session.
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We are so homesick and can’t wait to be home again this coming weekend, but it won’t be for long as tests at BC Children’s are already on the agenda.
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Many have asked how we will know if treatment was successful, and the short answer is that only time will tell. Because Jaeger’s tumors/brain cancer is considered recurrent the hope is to keep it at bay for as long as possible. Ependymoma in general is not considered a candidate for chemotherapy as it doesn’t respond to this type of treatment, so our options are surgery and radiation. Please keep Jaeger is your prayers.
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Our Go Fund Me has helped us greatly to cover the cost of ALL those things that aren’t covered by MSP, which are many, and we are grateful for every one of you that has helped us out.
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If you would like to help, our Go Fund Me is: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]
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08/03/2024

Wednesday evening brought a bit of excitement as Jaeger started to experience absence seizures. Somewhat scary for Mommy and Oma, but a call to 911 brought the Seattle Fire Department, Station 38 responding. Very professional, understanding, compassionate, and patient. Jaeger was admitted, but we expect him to be released today (Friday). A new MRI of his brain and spine proved clear 😅. His original diagnosis and trip to the hospital in Kamloops, back in October was triggered by focal seizures in his left hand/arm.
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Jaeger has started loosing a lot of hair at the radiation site, this may possibly never regrow.
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While Jaeger is sedated for treatment and we are waiting for him to wake up, Dominic goes for lots of walks with Oma and/or mommy, often to Starbucks, and we have found them in the most hidden places, including the 3rd and 7th floor of the Closed-campus Seattle Children’s Hospital and the University of Washington medical campus, 2 buildings over from Fred Hutch.
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As for the last photo, obviously Seattle knew I was coming!!!!! That does say 🧵 🪡 SEW-er, right?
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Our Go Fund Me has helped us greatly to cover the cost of ALL those things that aren’t covered by MSP and we are grateful for every one of you that has helped us out.
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If you would like to help, our Go Fund Me is: https://gofund.me/77d4d18c
Or
Email Transfer to: [email protected]
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Katja Marek

06/27/2025

06/12/2025

02/04/2025

12/26/2024

10/13/2024

09/15/2024

08/26/2024

08/03/2024

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