Gwen’s Story

Site created on March 14, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Gwen was born at 25 weeks. Her due date was in mid July, but she came in early April. She was 1 pound 5 ounces, 12 inches. She was a tiny little thing. She spent 4.5 months in the hospital.

She has many conditions. Most notably she has autism, but she also has something called Neurofibromatosis, which is gene deletion on the 17th chromosome. She has a particularly high deletion. She is missing 25 genes. They only know what six of those genes actually do.

One of the genes that she is missing is a gene that suppresses tumors. She is very susceptible to tumors, which is why she has so many. She has tumors in her brain, her optic nerve, her jaw, her collarbone, her spine, her shins, her femur. They are all benign, but that doesn’t mean they are not problematic.

The tumor in her jaw is huge. It is a giant cell Granuloma.

Because she was so premature she also has an underdeveloped esophagus and very weak lungs. This makes her very susceptible to things like Pneumonia.

Gwen has been hospitalized many times recently. Once for Covid, once for a stomach condition called H. Pylori. Once for a bad reaction to her chemotherapy, which ended up leading to liver failure, edema and many other problems.

The kid is strong, brave, smart, pretty, wild, fast, funny, mischievous, sweet, loving, fighting, happy, and good.

We love thoughts and prayers. Please keep them coming!!!! Thanks for loving our sweet Little Girl!

Newest Update

One year Anniversary

Journal entry by Krissy Jensen —

Today marks the one year anniversary since Gwen went into the ICU with liver failure. It was such a terrible day in so many ways, but it was so good in others, because that was the day when Gwen was baptized and Confirmed, too. It was also good because, despite all the suffering she had to experience, she’s still with us today. It could have been a much worse day, and so, in that sense, it was a good day!

Gwen’s been in and out of the hospital a few times since then. Her stays were much less dramatic, shorter, and sometimes even a little fun when she wasn’t really in any pain and didn’t have to have restraints. It turns out, that when Gwen is admitted to the hospital and just gets to lie in bed, watching movies, playing on her iPAd, while people come in and tell her how cute she is all day long, she kind of likes that! It was a bummer to be in the hospital all day on Thanksgiving Day, which she was, but we got Christmas at home, which was a lot of fun!

Gwen is doing so well right now! She’s showing off at Physical Therapy all the time, she’s enjoying playing with her friends at school, she’s laughing, talking, and not pulling out her G-Tube anymore! Her hair is growing back! Things have been really good for her lately!

If you’re a praying person, please offer some prayers of Thanksgiving for Little Miss today especially. The difference between today and this day last year is shocking! We are so grateful for her life, her current health, and all of the joy she brings to us all!

Thanks and God bless!

Aunt Krissy (and Gwen and grandma)
Read More of the journal titled "One year Anniversary"
  • She got to go to the rodeo this year and had the best day!
    She got to go to the rodeo this year and had the best day!
  • Sleeping in her side in the hospital during Thanksgiving. No restraints means she can sleep at least a little!
    Sleeping in her side in the hospital during Thanksgiving. No ...
  • Wearing yellow to support a boy at her school who is very sick with cancer.
    Wearing yellow to support a boy at her school who is very sick ...
  • Thanksgiving at the hospital. The turkey and pie were actually very good. The stuffing was horrific.
    Thanksgiving at the hospital. The turkey and pie were actually ...
  • This might be my favorite picture ever taken of her! This was at school. I don’t know what’s happening here, but I know that she’s having the best time!
    This might be my favorite picture ever taken of her! This was at ...
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