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Gracie, 9 Years Old, Undifferentiated Sarcoma

With your help, we are changing the world for kids fighting cancer. For Pediatric Cancer Awareness Month and our 15th Anniversary, follow along this month as we share stories of our past, present, and future. We hope you will feel inspired to change the world too. Your donation benefits the ISF Rare & Solid Tumor Program at Levine Children’s, a global program for kids battling rare cancers.  Fundraise for us or donate today.

“In early June, our family had Covid for the first time. While laying in bed with Gracie, she told me she had a “bump” on her chest.  When she showed me, I immediately knew it was something we needed to have looked at but definitely never thought our end result would be cancer.  We started with our pediatrician, who thank goodness decided to not just wait and watch this bump and sent us to Pediatric Surgical associates to be worked up. Gracie had an ultrasound + MRI first and eventually had a biopsy on July 11th. After her surgery we were told “it was highly likely she has cancer.”  The next three weeks were very much a rollercoaster as we waited to find out exactly what type of Cancer she had. While we waited we knew we were one of the rare unicorns in the Sarcoma world… we just didn’t know how rare. On August 1st, we learned just how rare of a unicorn Gracie was. She was diagnosed with Undifferentiated Sarcoma, specifically CIC-DUX4. When she had her biopsy they were able to remove the tumor in her chest but did know she didn’t have clear margins. On August 8th we learned our plan of attack that led to another surgery on Aug 11th where they did a re-excision of her tumor as well as placed her port for chemo.  Preliminary pathology results on that day were good and we found out on August 16th that they successfully removed ALL of the tumor. She has been healing for the past two weeks and on Aug 29th she was admitted to begin chemo. 

I will say as a parent, while I wouldn’t wish this journey upon my worst enemy, I have learned very quickly about the need for increased funding for research for pediatric cancer. Specifically for those of us with kids who have very rare cancers. While Gracie’s specific type of cancer does not currently have any clinical trials, I pray that there continues to be a greater focus for these kids.  I have been humbled daily by the outpouring of love and support for our family from our friends, family, community and even strangers. Although we are brand new in the fight, I am personally committed to do whatever I can to continue to bring awareness to pediatric cancer and pay it forward like so many have done for us.  It is an incredibly hard and overwhelming journey to navigate and if we can make that easier for anyone else moving forward I definitely want to. Being where we are in our fight, and continuing to work full time, I also recognize that I might not be able to give as much time as I want to right now – but the ISF race is a great start for us to create awareness and start to help raise money while also taking care of my family the way I need to.”

-Jenny, Gracie’s Mom (Undifferentiated Sarcoma)

Although Gracie’s type of cancer is extremely rare, the good news is that it’s isolated and has not spread. All of Gracie’s chemo will be inpatient, meaning she will be in the hospital for 3-4 days each of her 21-day cycles.  Her parents are in high hopes this will change and they can administer her chemo at the clinic.

Gracie and her family know precisely the importance of changing the world for kids with cancer and we are thrilled to have them as part of our ‘Change the World’ fundraising campaign.  They have joined our 15th Anniversary Race as Team Amazing Grace and currently have 30 registered team members and raised $3,520.  They are currently the leading fundraising team in 1st place!  Thank you to everyone supporting them. We hope you feel inspired to help us change the world for kids like Gracie by joining our fundraising challenge here. 

Or simply donate. Your donation benefits the ISF Rare & Solid Tumor Program at Levine Children’s, a global program for kids battling rare cancers. 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Gracie dyed her hair pink, for a little fun, before it falls out due to the chemo.

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Gracie ended up in the Isabella Santos Foundation room at Levine Children’s, you loved sleeping under the stars!

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“Her nurses have been AMAZING!!!… also members of the “angels on earth” club!” -Gracie’s Mom

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One round down, two to go!

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