Lily Martinez Beaman
Lily was born on June 1 to Jake and Gisela. From day one, she made a big impression on her family. Her mom describes her as their spicy little meatball. She had the kindest and most thoughtful heart but will make it known if you something she does not like. Especially when it comes to defending her big sister. She loves to dance and sing and has a knack for lyrics she can learn any song after listening to it a couple of times. She loves to rhyme even with made up words but she’s a rhyming master. She loves all soft and cuddle things. One of her greatest source of comfort is her stuffies and baby dolls. When she’s feeling her best you will find her playing pretend house, school, or restaurant with her big sister, dancing & singing to any Disney Zombies, Disney Descendants, or Super Kitties’ songs. She’s so smart and observant, she’s already picked up some addition skills from her big sister and tries to memorize some of her favorite books. She also has a witty sense of humor. She knows exactly when to drop a one liner, give a silly face, or give a sassy comeback without getting herself into trouble. It’s a true skill.
Lily’s favorite place is home with her family. Even when we go on a quick errand she’ll say she’s homesick. She says she misses home because she misses having our dog with her. Her and our 12 year old pup, Melo, developed a really strong bond during this past year. It started even before diagnosis. It took a while to get to where they are but she’s always had his back. She’ll always makes sure he’s had more than 4 treats throughout the day and has a warm blanket by his side. She really takes care of his emotional needs. But the person she cares for the most and looks up to the most is her big sister, Bella. Bella’s the reason Lily loves dance so much. She’s watched Bella perform in recitals and showcase with her dance studio so when Bella started creating “Dancing with the Stars” choreography Lily was right behind her. We even score their dances. Lily’s favorite season so far is the one with Chandler Kinney who played Willa in Disney’s Zombies. We live about 50 mins from UCSF- Mission Bay and we drove roundtrip for 6 weeks from home to her radiation treatments with nothing else but the Zombie’s soundtrack in the background. We were even offered housing at the Ronald McDonald housing but being home brought Lily so much joy and safety that we couldn’t accept and just got to spend more family time on the road. Some of her other favorite shows and movies include, Lilo & Stitch, Paw Patrol, Super Kitties, Boss Baby, Despicable Me & Minions, Bluey, and Gabby’s Dollhouse. These are all the shows and movies that brought her comfort during her hospital stay as well as when she has to take her clinical trial medication. If we’re not home her favorite places to go to are either parks, indoor play spaces, or the beach. Her favorite family trip had been to Maui. The first place she asked to visit while she was admitted at UCSF was Hawaii. She loved the pool, the beach, and ice ice, that’s what the girls call shaved ice. She likes Hawaii because that’s where Lilo & Stitch are from. It’s funny because she has a bit of a Lilo vibe in her own personality so it’s fitting. While Lily loves to follow in Bella’s foot steps she also knows herself as her own person. One of the activities she did not join with sister is soccer but she absolutely enjoys rooting for the BayFC Women’s soccer team. It’s one of the few outdoor outings she enjoys going. PayPal park is such a family friendly arena. It has a grass area by the food trucks where families could lay out picnic blankets and still watch the game on a Jumbotron screen. Once we finish eating there we then go to our seats. It’s been fun watching Lily and Bella enjoy a sport together.
Diagnosis
Looking back, Lily's first symptoms were subtle. She started to just trip over things and became clumsy about two weeks before her diagnosis. There wasn’t a pattern, it was just random trips and falls. Her parents just thought it was normal three-year old clumsiness. She would randomly tear up from only one eye, her right eye, when watching tv. That also started about two weeks before diagnosis. Gisela started to get a little worried when the clumsiness was becoming more frequent and decided she was going to bring her into the doctor for an ENT check up. She had ear tubes placed in her ears when she was one, so they thought she was having equilibrium/hearing issues again. But on the weekend of the February 8th she started to throw up and her walking was really off and she was falling for no reason. Initially they thought she might have some kind of food poisoning because she started throwing up after they had attended a school fundraiser dinner at her sister Bella’s school the day before. But her walking kept getting worse so they took her to her primary doctor on the February 9th and within seconds of seeing her walk he told them to immediately go to UCSF Benioff Children’s ER in Oakland. That same night after hours of exams, blood work, and a rapid MRI they brought Gisela and Jake into a room and changed their lives forever. They were told she had a brain tumor and and needed surgery for a shunt placement and they would meet with a neuro oncology team the next day to go over next steps. Lily was transferred to PICU and the next day they were given even worse news, that she had DIPG. They had never heard of DIPG until that day. Their team lead, Dr. Reddy offered them the opportunity to join a clinical trial through UCSF -Mission Bay and they took it without hesitation. Anything to give them more time. Lily was then transferred to UCSF- Mission Bay in SF. Lily endured so much without any preparation or notice. It was all so traumatizing for her. But Gisela and Jake know they have a great team on our side, that always places her quality of life and planning the the least traumatizing experience for her at the forefront.
From Gisela, "I don’t know why this has become our path and I do not wish it on anyone but Lily is so strong and such a fighter. No matter what comes next her story needs to be told. In hopes to help other families that are navigating the worst thing imaginable and ultimately she deserves to be known. Her strength and bravery through this all is unfair but its her super power. We can all learn from her strength to still find joy even during the darkest of times. I’m left in awe watching both of my girls navigate this new life and we’re so proud to be their parents and love them so much. We don’t take our life for granted."
