My Story

Gwynn was diagnosed with Churg Strauss vasculitis In March of this year. She is currently receiving chemotherapy and high doses of steroids in hopes to put the disease into remission. Churg Strauss is a very rare disease and is incredibly rare in children.

Since being diagnosed Gwynn has been treated with several chemotherapy medications and large amounts of steroids in hopes of putting the disease in remission. Despite aggressive treatment Gwynn's disease is still not under control. We have begun to exhaust treatment options and Gwynn's doctor based on advice from a specialist at the Cleveland Clinic is currently requesting the insurance company allow us to treat Gwynn with Orencia which to date has never been used to treat Churg Strauss.

 

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gwyneth larson posted a new journal entry.

Well I finally got a hold of Gilette on Friday and they scheduled an appointment for her to see a different doctor on Monday since the doctor she is seeing for her arm is ... Read more

gwyneth larson posted a new journal entry.

The baby is here!!! Kilian Bryant Larson was born on September 15th at 5:51PM. He was 6lbs 12 oz, pretty good since he was only 36 weeks 5 days.He had jaundice for the ... Read more

gwyneth larson posted a new journal entry.

Wow what a ride this month is turning out to be for our family. Earlier this month Gwynn got her cast wet and we had to make a little trip to the ER at 11PM at night to ... Read more

gwyneth larson posted a new journal entry.

Just a quick update...we have only been in Waverly a couple times briefly since Monday to check the mail, check on the restaurants and water the flowers. We are still at ... Read more

gwyneth larson posted a new journal entry.

Gwynn had chemo yesterday and her doctor came over to the hospital for a check up, Her eosinophil number was a little higher this time than last, 7%. This is not a huge ... Read more

gwyneth larson posted a new journal entry.

Bryant M. JohnsonObituaryGuest Book"Today a candle is lit for Bryant. He will be missed. May..."- Connie LarsonView SignJohnson, Bryant M. age 67, of Brooklyn ... Read more

gwyneth larson posted a new journal entry.

It has been such a tough few days. My dad passed away on Monday morning. It was a very tough couple days the two days before he passed and I was up for more than 48 hours ... Read more

gwyneth larson posted a new journal entry.

We got results back on Gwynn's MRI on Tuesday but they still don't give us a diagnosis. There is a crescent shaped area of abnormality but the radiologist is not sure what ... Read more

gwyneth larson posted a new journal entry.

Just wanted to give a quick update. I spoke to Gwynn's doctor today and Gwynn will have her MRI this week. I have to tell you that we seriously have the world's greatest ... Read more

gwyneth larson posted a new journal entry.

What a crazy summer we are having, Mostly good with a couple bumps in the road. The fabulous news is the drug continues to work. Gwynn had her infusion last Monday and her ... Read more

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