lydia’s Story

Site created on August 12, 2021

Our little "princess destroyer" and "lydiva" was developing a little bit of a beer belly so we mentioned it at the 2 yr well child visit. The nurse practictioner thought it was a good idea to get xray and ultrasound. Little did we know that the results of those tests would turn our world upside down. There happened to be a large growth on her right kidney which was causing the enlarged abdomen. After getting an urgent CT scan at childrens hospital, the results showed what was originally believed to be a nephroblastoma or wilms tumor but after biopsy confirmed clear cell sarcoma of the kidney.

Newest Update

Journal entry by sara warrens

Great news to report.  Lydia had her 1 year scans and everything was good.  Well, mostly good.  The radiologist noted something on one lymph-node but her oncologist is not concerned about it.  We are taking that as good.  This lymph-node call out slightly changes up her next scan.  She was supposed to switch to a CT of the abdomen and an X-ray of the chest to reduce her exposure to radiation.  Now, she will have a CT of both areas to check this lymph-node on her next scan. 

 

Like last time, she completed her CT without sedation.  She even followed the commands of when to hold her breath and exhale.  They checked her kidney function and it is working as it should.  Lydia found it hilarious that she had to collect her sample in a cup.  “PEE IN A CUP!!  THIS IS HILLARIOUS!!”  I was very thankful we ran into our nurse friend who gave us a bigger vessel to catch the sample in.  Next scan is in 3 months. 

 

Please join us June 10th for our 2nd annual lemonade stand to raise money for pediatric cancer and pop tab collection for Ronald McDonald House.  The kids are hoping to raise $500.  Lemonade stand starts at 2:00.  Adult enhancements will come out at 4:00 along with bbq pork sandwiches.  

 

https://www.alexslemonade.org/mypage/3293626?utm_campaign=Lemonade%20Days&utm_medium=email&_hsmi=250676659&_hsenc=p2ANqtz--advPDHLGK0-YWnrqoDvZi5QPMwEIkCB0YvSsIyNi_zzqawOfZ_mjU-Nl0HPSXV8v1FU3ReCqA5WF0B_QlfNoWWjBpXA&utm_content=250676659&utm_source=hs_automation

 

Here is the Ronald McDonald House story and TMJ interview we did in January.  Bennett is very proud of his magazine cover and TV interview.

https://rmhc-easternwi.org/sharing-a-safe-haven/

https://www.tmj4.com/news/positively-milwaukee/ronald-mcdonald-house-uplifts-families-during-the-hardest-times

 

‘Scan anxiety’ is very real and I am over it.  It has been a long few weeks.  I had a baseline breast MRI on March 23 because of my genetic test results.  They found a spot which turned into needing an ultrasound and mammogram on April 3.  Then I had a MRI guided biopsy on April 13.  Everything was fine with my biopsy but it was stressful. Lydia had her scans on April 20th.  To wrap up the scans I had my spine and brain MRIs on May 2.  All my scans look good.  Thank God I have 4 more months before my next scan. 

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