Our 15 year old daughter, Alyssa Nevaeh Lopez, was diagnosed with a rare genetic condition called Neurofibromatosis 1 (NF 1 for short) when she was only 8 years old. NF causes tumors to form in nerves around the body. It is incredibly rare with only 200k cases in the US per year. Although strides have been made in the study of NF, there are still many unknowns and no cure, leaving patients with unanswered questions and difficult journeys ahead. Alyssa was diagnosed after she was getting persistent stomach aches and having trouble holding down food. The doctors discovered a large benign (noncancerous) neurofibroma (NF tumor) wrapped around her pancreas and behind vital organs. Surgery to remove it was not an option because of the size and position making it a dangerous procedure. This left us with no other option but to embark on this new journey of regular doctor’s visits to Houston to manage the tumor and minimize the impact it had on Alyssa’s development. Since then, Alyssa has had to overcome many health challenges. They placed a j-tube in her stomach two years later, at age 10, to ensure she got all the proper nutrients after a very difficult period of undernourishment and dehydration caused by the tumor. To this day, she gets regular feedings through her j-tube. Some side effects of NF 1 include nausea, growth irregularities, headaches, and tumors constantly pressing on organs. These are all things Alyssa has had to live with since her initial diagnosis. Most NF tumors are noncancerous, but there is a slim chance that these tumors become malignant. Only 8 - 13% of NF patients will get cancer in their lifetime. Four months ago, on March 17th, 2024 - we received the news no family should ever hear. Alyssa hadn’t been feeling well for about a week. We took her to the doctor in Laredo, and they took x-rays and couldn’t detect any abnormalities. After the pain persisted, we called her doctor in Houston who instructed us to head over as soon as possible. After strong pain medicine and multiple exams, we were told there was a high possibility that she had malignancies around her liver where she was having the pain and in her existing tumor. We waited for biopsy results with the hope that the doctors were wrong. The waiting time felt like an eternity. Unfortunately, the doctors were right. The results showed cancer in her body. She was officially diagnosed with MPNST (malignant peripheral nerve sheath tumor), a rare type of aggressive soft tissue sarcoma which mainly appears in patients with NF. Alyssa became one of the 8-13% of people with NF to get cancer. Our lives changed in an instant. We got the results one day and the next we were in the doctor’s office signing chemotherapy consent forms and going over all the million side effects our child would experience under these drugs. Alyssa started her first round of chemo that same week. This journey has been incredibly difficult for Alyssa and our entire family. We are doing everything in our power to ensure Alyssa gets the best care possible. Alyssa wasn’t able to finish her freshman year of high school alongside her classmates. Instead, she was admitted to the hospital for the start of an intense six rounds of chemotherapy. Something no child should have to experience. Since March, we have been back and forth between Laredo and Houston. At times having to stay for weeks in the hospital and Airbnbs and hotels between appointments. We’ve witnessed her fight hard to overcome this, and we are devoting our entire time and energy for our daughter to be cancer free. This has affected all of us emotionally, mentally, and also financially. My wife and I have had to leave work and take major hour cuts to care for our daughters. This is why we are humbly asking for donations as we continue on this journey to beat cancer. This is not an easy ask for us, but we’ve reached a point where starting this fundraiser was necessary. Alyssa is incredibly smart, resilient, and our eldest daughter. She loves to watch anime, read manga, research new topics of interest, play video games, and listen to music (some of her favorites are Taylor Swift, Conan Gray, and of course, K-pop). Alyssa has a fun fact about everything. So incredibly intelligent and witty! She amazes us every single day. Alyssa has had to grow up quickly with more adversities people have in their lifetime in only 15 years. Alyssa means the world to us and to everyone she meets. All we want is for our daughter to be completely healed so that she can live a healthy and normal life next to her two little sisters, Aubrey and Ava, and her entire family that loves and cares deeply for her. We will not take your donations for granted and are forever grateful for all the support. We truly appreciate all the kind words and prayers that have come our way since sharing Alyssa’s diagnosis. We love you all and are fighting the fight alongside our daughter. The chemotherapy has been effective in treating the cancer thus far, but we still have a long road ahead of us. God is with Alyssa and we continue to pray every single day. We will use this LFEBridge page to regularly update you on Alyssa’s condition. We also hope this brings awareness to Neurofibromatosis and Childhood Sarcoma which have brought enormous hardship to our family for years. Alyssa is getting the best care possible at MD Anderson Children’s Cancer Hospital. Thank you all from the bottom of our hearts, Jessica Durrance & Noe Lopez Learn more about Neurofibromatosis HERE
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