» 2018 Moriah Ratner – “Live Like Lola”

<script src="/jbcore/juicebox.js"></script><script>new juicebox({baseUrl : "/2018_Winners/Ratner/Live_Like_Lola",containerId: "juicebox-container",galleryWidth: "100%",galleryHeight: "100%",backgroundColor: "rgba(34,34,34,1)"});</script><div id="juicebox-container"><noscript><h1>Live Like Lola</h1><p></p><p><img src="images/1496-Ratner_Moriah_Live_Like_Lola_1.jpg" title="" alt="Lola, 13, was diagnosed with diffuse intrinsic pontine glioma (DIPG) on August 26, 2016. This is an inoperable tumor located in the pons, a portion of the brainstem. The average life expectancy is 9-12 months; fewer than 10% of children with DIPG survive two years following diagnosis. While most childhood cancers have seen significant developments in treatment, in the past 40 years, none of the over 250 clinical trials for DIPG have shown any improvements in chances of survival. February 16, 2017." /><br> Lola, 13, was diagnosed with diffuse intrinsic pontine glioma (DIPG) on August 26, 2016. This is an inoperable tumor located in the pons, a portion of the brainstem. The average life expectancy is 9-12 months; fewer than 10% of children with DIPG survive two years following diagnosis. While most childhood cancers have seen significant developments in treatment, in the past 40 years, none of the over 250 clinical trials for DIPG have shown any improvements in chances of survival. February 16, 2017.</p><p><img src="images/1495-Ratner_Moriah_Live_Like_Lola_2.jpg" title="" alt="Because there are no drugs specifically targeted towards children with DIPG, doctors use drugs approved by the FDA that are meant for adults and tailor them for children in Phase I trials. Lola decided herself to participate in a trial at St. Jude Children's Research Hospital. There was no guarantee that the trial would have any effect on her tumor. Knowing this, Lola underwent treatment to benefit DIPG research. Sacrificing her body to potentially help the next child with DIPG was more important than quantity of life. After four months of chemo, Lola had met her breaking point and stopped the trial, a decision based on her quality of life. August 10, 2017." /><br> Because there are no drugs specifically targeted towards children with DIPG, doctors use drugs approved by the FDA that are meant for adults and tailor them for children in Phase I trials. Lola decided herself to participate in a trial at St. Jude Children's Research Hospital. There was no guarantee that the trial would have any effect on her tumor. Knowing this, Lola underwent treatment to benefit DIPG research. Sacrificing her body to potentially help the next child with DIPG was more important than quantity of life. After four months of chemo, Lola had met her breaking point and stopped the trial, a decision based on her quality of life. August 10, 2017.</p><p><img src="images/1497-Ratner_Moriah_Live_Like_Lola_3.jpg" title="" alt="Lola's mother, Melissa Muñoz, comforts Lola before bed while admitted to the hospital on December 16, 2016, after contracting an infection. Melissa has been by her side every step of the way. She has supported Lola in leaving treatment plan decisions up to her, instilling that because it is her body, it should be her choice." /><br> Lola's mother, Melissa Muñoz, comforts Lola before bed while admitted to the hospital on December 16, 2016, after contracting an infection. Melissa has been by her side every step of the way. She has supported Lola in leaving treatment plan decisions up to her, instilling that because it is her body, it should be her choice.</p><p><img src="images/1498-Ratner_Moriah_Live_Like_Lola_4.jpg" title="" alt="Lola attempts to maintain normalcy by hosting a slumber party on November 4, 2016. Melissa checks in on the girls to make sure they are not disruptive in a way that will wake up the little ones. Lola's increased maturity level has made it difficult for her to connect with her peers, often leading to exclusion." /><br> Lola attempts to maintain normalcy by hosting a slumber party on November 4, 2016. Melissa checks in on the girls to make sure they are not disruptive in a way that will wake up the little ones. Lola's increased maturity level has made it difficult for her to connect with her peers, often leading to exclusion.</p><p><img src="images/1499-Ratner_Moriah_Live_Like_Lola_5.jpg" title="" alt="The Muñoz family stops at Niagra Falls on July 12, 2017, during a camping trip to give Lola the opportunity to experience the natural phenomenon. It is important for the family to make memories and allow Lola to experience sights while she can. Lola's parents maximize her time by exerting efforts to make sure Lola experiences what the world has to offer." /><br> The Muñoz family stops at Niagra Falls on July 12, 2017, during a camping trip to give Lola the opportunity to experience the natural phenomenon. It is important for the family to make memories and allow Lola to experience sights while she can. Lola's parents maximize her time by exerting efforts to make sure Lola experiences what the world has to offer.</p><p><img src="images/1500-Ratner_Moriah_Live_Like_Lola_6.jpg" title="" alt="Lola begins experiencing tenderness in her chest, a sign of puberty. Melissa decides it is time for Lola to purchase her first bras, making sure she feels comfortable wearing them with the ways her medication has created changes in her appearance. In addition, Lola has to wear adult diapers because her medications cause uncontrollable bowel movements. March 8, 2017." /><br> Lola begins experiencing tenderness in her chest, a sign of puberty. Melissa decides it is time for Lola to purchase her first bras, making sure she feels comfortable wearing them with the ways her medication has created changes in her appearance. In addition, Lola has to wear adult diapers because her medications cause uncontrollable bowel movements. March 8, 2017.</p><p><img src="images/1501-Ratner_Moriah_Live_Like_Lola_7.jpg" title="" alt="Lola's father, Agustin Muñoz, teaches Lola how to float on her back at a hotel swimming pool. April 9, 2017." /><br> Lola's father, Agustin Muñoz, teaches Lola how to float on her back at a hotel swimming pool. April 9, 2017.</p><p><img src="images/1502-Ratner_Moriah_Live_Like_Lola_8.jpg" title="" alt="Lola is admitted to Upstate Golisano Children's Hospital after suffering from severe dehydration. Lola fights through the pain of getting an IV. The slew of scheduled appointments leaves Lola frequently visiting the hospital. February 15, 2017." /><br> Lola is admitted to Upstate Golisano Children's Hospital after suffering from severe dehydration. Lola fights through the pain of getting an IV. The slew of scheduled appointments leaves Lola frequently visiting the hospital. February 15, 2017.</p><p><img src="images/1503-Ratner_Moriah_Live_Like_Lola_9.jpg" title="" alt="Since the diagnosis, Lola takes baths instead of showers because the tumor has severely affected her balance. The yearning for empathy due to an inability for others to find resonance with Lola's condition has brought on feelings of isolation and loneliness. The uncertainty of how much time Lola has left to live leaves the family on edge. March 26, 2017." /><br> Since the diagnosis, Lola takes baths instead of showers because the tumor has severely affected her balance. The yearning for empathy due to an inability for others to find resonance with Lola's condition has brought on feelings of isolation and loneliness. The uncertainty of how much time Lola has left to live leaves the family on edge. March 26, 2017.</p><p><img src="images/1504-Ratner_Moriah_Live_Like_Lola_10.jpg" title="" alt="Lola turns 13 on September 24, 2017. Agustin and Melissa recall this time last year thinking her 12th birthday would have been her last." /><br> Lola turns 13 on September 24, 2017. Agustin and Melissa recall this time last year thinking her 12th birthday would have been her last.</p></noscript></div>