Love for Lena - Fight Glioblastoma

Brain Cancer Diagnosis:
Evangeline (Lena) Tietjen was diagnosed with glioblastoma brain cancer on November 7th, 2017. She was only four years old. Before that time, Lena was a perfectly healthy and happy little girl. She loved to dance, read, and play with her twin brother Clark. The only indication her family had about this tumor was when Lena started getting headaches and vomiting in mid-October. Everyone thought she had a typical stomach bug, and even when symptoms persisted, and her parents took her to Children's Hospital of Philadelphia on Halloween evening, she was again sent home by doctors. It wasn't until two days later that she developed right sided weakness and her tumor was discovered by CT scan. Erin and Matthew Tietjen were told that the diagnosis was terminal, and that she had between 3-9 months to live, even with treatment. Even worse, the location of the tumor, deep in her thalamus, made it inoperable.

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In addition to preparing Lena for radiation, her parents immediately used this GoFundMe page and the local news to start "Lena's Library" and bring attention to Lena's story as well. It was a resounding success, and she has even collected enough books to give back to others who are less fortunate. Our hearts were full with the generosity of strangers as people came together to gift Lena with her very favorite thing: books. 
 
https://abcnews.go.com/Lifestyle/year-inoperable-brain-tumor-receives-hundreds-books-lenas/story?id=51298668
    
Miracle at Disney World:
Being huge Disney fans, Lena's extended family took a last minute vacation with her, only three weeks after her diagnosis. What was supposed to be a time to make family memories before Lena's body took the physical toll of radiation ended up being a nightmare as her condition rapidly deteriorated. Only minutes before the bus was arriving to bring the Tietjen's back to the airport and home to New Jersey, Lena started vomiting repeatedly and the ambulance was called. When she arrived at Arnold Palmer, her parents were told that her tumor had doubled in size and was causing an extreme mass effect on her brain. She couldn't be transported safely back to New Jersey, and her condition was such that her scheduled radiation would be impossible for her to endure. Only a month out of diagnosis, the Tietjen's were told that they were already out of options.

However, what happened next was nothing short than a miracle. Dr. Samer Elbabaa, Arnold Palmer's Director of Pediatric Neurosurgery, reviewed Lena's scans and told her family that her "inoperable" tumor could actually be accessed and removed. The surgery was successful, and Lena was able to be home for Christmas with her family! 

https://www.wftv.com/news/local/innovative-surgery-removes-large-portion-of-tumor-in-4-year-old-girl/669808238    
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On-Going Battle:
The Tietjen family has been blessed to have be given the opportunity to FIGHT for Lena. Since her surgery, she has undergone proton radiation at CHOP/Penn and has participated in a promising clinical drug trial called Onc201. Lena spent two months completing intensive day hospital rehabilitation, and then continued with physical, occupational, and speech therapy throughout the year. Erin and Matt have spent thousands of hours researching and contacting the best medical professionals in the world to move Lena's "army" in the right direction with her treatment goals. They have spent tens of thousands of dollars on consultations, medications, supplements, and travel expenses.

Unfortunately, in August 2018, after 7 months of clean scans, the tumor returned with a vengeance. Lena was accepted on a new clinical trial at Duke, but before she could enroll she declined rapidly. There were no options left, until Dr. Elbabaa and the Arnold Palmer team agreed to have Lena return to Orlando for a second surgery to debulk the tumor once again.

A Second Miracle:  
On October 9th, 2018, Lena underwent an extremely aggressive, high-risk, and innovative surgery to her thalamus and brain stem. While the surgery was again a miraculous success, with up to 80% of the growth removed, the Tietjen's know that this operation is just the first step in a series of miracles that need to happen to save her.

First, Lena needs significant rehabilitation. While she has been able to breathe on her own, recovery for a second "big" brain surgery can be a long-road. The Tietjen's are trying hard to get their daughter back home for in-patient rehabilitation, otherwise they may face an extended stay in Florida away from their home and family support. 

Next, Lena needs to get strong enough to either participate directly in the clinical trial - or - complete a second round of radiation to again stunt the tumor's growth.

The clock is ticking and the Tietjen's are far from home. They know that there was no other choice but it doesn't make the decision to come to Orlando any easier. They are able to fight for Lena because of the support of everyone who has donated, and become part of Lena's Army.

Our fight isn't over yet. Please pray for Lena and the Tietjen family as they face the most difficult days ahead. 

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Organizer and beneficiary

Lindsay McCarron 
Organizer
Creesville, NJ
Erin Tietjen 
Beneficiary
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