Franky Talley lost his battle against brain cancer Wednesday morning.
The five-year-old Levittown boy heroically battled cancer for the past 18 months. The community that loved and supported him made sure he knew that right up until his final hours. People from Levittown and beyond followed Franky’s story, hoping and praying for the best.
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From fundraisers at Jo-Jo’s Ice Cream and Water Ice to Halloween celebrations in months other than October, the community has come together to support Franky. His supporters said they were part of Team Franky, which currently over 20,000 social media followers from around the globe.
Posts from people, both local and afar, filled the page in the past days as Franky’s family and supporters updated followers to Franky’s worsening condition.
Franky suffered from Diffuse Intrinsic Pontine Glioma (DIPG). Medical experts say there is no known cure for the brain stem cancer that affects children. According to WebMD, chemotherapy is the most effective form of treatment for DIPG, however, in 90 percent of the cases the treatment extends the patients life by only 18 months.
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Eateries donated food to family and firefighters taking time to visit Franky in his final days.
Franky’s condition began to worsen on Monday and his mother, Tiffany Fusco, wrote on the Team Franky Facebook page that she feared he did not have much more time.
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“I have never in my life been so scared that the time is near. My heart is in so much pain,” she wrote.
Here’s a note posted by Fusco on the Team Franky Facebook page Tuesday:
Today has been very hard for us. Hospice came and explained to us what it will be like keeping Franky home. They explained how he will take his last breathe, and we will have to wait for the funeral home and hospice to get here. To be honest, I never wanted it this way. I always wanted to be in the hospital. I always pictured us there, but Franky doesn’t want to be there. I myself don’t know how I will be able to set foot in my house let alone my room if something happens ever again, but I have to do what’s right for Franky. He’s the boss, and he knows what he wants. I wouldn’t want to transfer him somewhere and him be sad or mad. Even if he eventually got over it. I wouldn’t want to live my life with the guilt of not granting his wishes. From the movement Franky was born, I always wanted him to be happy. I want him to be safe and feel comfortable. I rather live my life in pain because I did something he wanted, rather than doing something that he does not want. After discussing all of our options, again we decided to keep him home. Hospice explained that his breathing is getting worse. He is having a hard time catching his breathe. It’s very scary and sad. They explained that there is a big possibility he may not make it until tomorrow. Because of him being kept home, we had to call a funeral home. They want us to have someone already, so if the time does come, we can have him picked up and taken there quickly. I don’t know how I could be in the same house with my dead child waiting…I can’t picture it…I don’t want to…in my head I’m still praying for him to turn around. I’m praying for him to get better. Because of the amount of pain Franky was in today along with the struggle to breathe, we had to make a decision I never wanted to make…put Franky on morphine. Working in a nursing home, burying my father, I know morphine is something that is used when patients die. I have done everything to not use it because in my head he wouldn’t be “dying” yet because he wasn’t using morphine. Again, I had to push my own pain and fears away because I can’t allow him to suffer. If this disease is going to take his life, I can’t stop it as much as I want to. That is the hardest part. I can’t control it, but what I can control is his pain. I don’t want him in pain…I know Franky has had a wonderful life. I’m very proud to have been chosen as his mother. I’m proud of him every day. I just want you all to understand that although we were told time and time again about this disease, Franky being terminal, and that one day he would die…it’s not any easier…because he was given 6-9 months, and now he is on 18 months does not mean we are okay. We may be lucky to have beaten statistics, but no amount of time is enough. No mother should have to bury their child. This is unfair. I never thought I would feel as much pain as I feel. I don’t know how I will be able to get through this. I don’t know how I will be able to wake up the next day. I don’t know anything. People tell me I’m strong, but I’m not. I’m weak, I’m hurt, I’m scared, and at the end of the day I’m just a mom…a mom losing her son to this monstrous disease that has not had any improvement in the last 30 years. I’m not the first parent walking this fight, and I won’t be the last. That’s one of the hardest parts. People shouldn’t feel this way. For the rest of my life, I will be incomplete. I will never feel the same happiness I once felt with my son whom I love with every ounce of my being. I will never be able to save him from this beast. Once my son is defeated by this cancer, I will be defeated as a mother. For the first time in my life, I will have let my baby down. I can’t kiss this and make it better. They say god makes no mistakes, they say everything happens for a reason, but this…there will never be a reason good enough for this. There will never be a reason good enough. No reason could ever justify having a once healthy, normal child to having a terminally ill one. Nothing will ever make sense that I should watch my child go from running around to slowly losing everything little by little..watching him not be able to walk or run…not be able to play with his friends…not be able to talk…not be able to hold his head up…to constantly throwing up, needing to be suctioned, struggling with breathing, needing machines, and worse one day dying…never knowing when that day is…hearing it may be tonight. Having to live in fear for months…there are no words…there is no reason! I’m mad, heartbroken, and in the most fear ever. I’m praying and praying and things aren’t getting better. I’m holding my sons hand as it turns blue. I’m watching him struggling to breathe thinking is this going to be his last breathe…I’m feeling so helpless. I want to save him. I want to give him my brain. I want to do anything to change this situation, and I can’t! I’m begging you all to pray for us. We need prayers. I pray to god for him to answer these prayers. I pray to get a miracle. I pray to have my son tomorrow.
