Precious Lily’s Fight Against DIPG Brain Tumor

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Lilys Fight Against DIPG Brain Tumor 
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Family & Friends, some of you have already learned about the devastating news Lesley and Jason received regarding their 4-year-old daughter, Lily Kate Williams-Brola. This is their story of heartbreak, fight, and most importantly, their HOPE.



Over the last few months, 4-year-old Lily Kate seemed a bit clumsy when walking. She would easily trip and take bigger-than-needed steps. It started off slight and gradual, but it became more noticeable in the last couple of weeks. A few weeks ago, Lesley and Jason also noticed a very subtle horizontal tilt in Lily Kate's left eye. When looking straight ahead, Lily Kate's left eye would slightly turn in toward her nose. Lesley and Jason assumed the tripping was a "clumsy" phase Lily Kate was going through, which they addressed by buying her a slightly smaller pair of shoes. Regarding her eyes, they set an eye appointment with the optometrist. Lesley and Jason assumed they would be told that Lily Kate simply needed to wear some glasses to rectify any vision issues.

On Wednesday, September 23, 2020, Lily Kate and her father went to her optometrist appointment for her eye exam. Jason was told Lily Kate had slight swelling in both of her optic nerves. The optometrist then told Jason that Lily Kate needed to immediately see her pediatrician. Jason called his wife, Lesley, who was at work and quickly brought her up-to-speed on everything. Lesley called Lily Kate's pediatrician, and all three of them, Lily Kate, Mom, and Dad, were in a pediatric appointment by 1:00pm that same day. The pediatrician did a few of her own tests and agreed that Lily Kate needed an immediate MRI. She advised that the only way to get a same-day CT or MRI scan was to go to the emergency room at Children's Hospital in Dallas. She told Jason and Lesley she would call ahead and have a physician waiting for them. They quickly made their way down to Children's Hospital in Dallas, and the staff chose to first do a CT vs. MRI. Around 6pm that evening, Jason and Lesley were taken into a separate room and told that Lily had a DIPG tumor in her brain stem. The Doctors told them they needed to admit Lily Kate to the hospital to schedule an MRI for early the following morning and perform an Endoscopic Third Ventriculostomy (ETV) to relieve swelling in Lily Kate's brain.

Lily Kate's tumor is in her brain stem and inoperable. Jason and Lesley were told that the only standard treatment available is radiation therapy to shrink the tumor. They were also told that DIPGs are currently mostly not survivable, though there are clinical trials.

Thursday, September 24, 2020, Lily Kate had an MRI done. The Neurosurgeon, Dr. Dale Swift, MD, confirmed that Lily Kate indeed had a DIPG tumor and that she needed to undergo an Endoscopic Third Ventriculostomy (ETV). The ETV surgery would relieve the pressure and fluid build-up in Lily Kate's brain and optic nerves. Doing so should allow her to start walking and seeing somewhat normal again, but only for the near future. Lily Kate was whisked away, and by 3pm, she was out of surgery and starting to gain consciousness.

Friday, September 25, 2020, Lily Kate was up and moving around a bit. Amazingly enough, Jason and Lesley could already see such a massive improvement in Lily Kate's balance and her eyes by that time. Around 7pm, the family was discharged from the hospital. Lily Kate was so excited to get home and play with her two older sisters, Chloe 11, Kinley 8, and her cousin Blake 7.

The next two days, Saturday and Sunday were mostly spent researching and gathering as much information as possible regarding current clinical trials and research facilities. Jason and Lesley found several clinical trials that seemed to be aligned with addressing Lily Kate's needs, but Lesley also found a clinical trial in New York City that matched up with Lily Kate's needs, EXACTLY. The Doctor in charge of the clinical trial told Jason and Lesley that Lily Kate needs to complete her six weeks of radiation therapy, and the tumor will need to show no signs of growth. If Lily Kate can achieve this, he will bring her into the trial.

Lily Kate is scheduled to begin her radiation therapy on October 12, 2020. She will go in each morning, Monday through Friday, for six weeks. We are PRAYING that GOD blesses Lily Kate with the opportunity to move into the clinical trial once she completes the radiation therapy.

Lesley and Jason ask you to pray for their family and, more specifically, to pray for COMPLETE AND TOTAL HEALING FOR LILY.

This page was created to help ease the financial burden for this family so they can give all of their focus to Lily Kate. If you are able to contribute to support this precious family, please donate. Your kind contributions will be used for medical expenses, medication expenses, travel expenses, living costs and clinical trials treatment.

We would like to keep everyone updated with Lily Kate’s strength and bravery with photos and progress. Thank you so much for your prayers, love and support. This family is forever grateful for your support.


     Lily Kate Williams-Brola - 1 Year Birthday Photo Shoot

                             July 4, 2019 - Newman Village Neighborhood Parade (Lesley, Lily, Jason, Chloe, and Kinley)

                                                                            Lily (3), Chloe (10), and Kinley (7)

                                                                                           Lily, Lesley, and Jason

                                                                          Lily Kate Williams-Brola - 3 Years of Age