Helping Lily
Donation protected
On October 6, 2017 Lily was stopped at a red light. The car behind her never looked up from his phone and never slowed down. He drove right into Lily's car. As a direct result from this accident she had a few surgeries including surgery in the lumbar section of her back - her right L4-5 for spinal decompression in May 2019. We believed the worse was over and she was on her way to becoming herself again.
Beginning in March 2020 Lily began to have severe lower back pain. The pains would shoot down her right or left leg. She was also experiencing numbing in her lower half. She went back to her Neurosurgeon, Dr. Nirav Shah. They began testing her again. At this time, we believed the cause of the pain and numbing to be associated with the lumbar section of her spine, since this was where the damage was (from car accident) and where the operation had focused on. The MRI took imaging of the top 3 sections of her spine: cervical, thoracic and lumbar. She was sent to pain management. By July 2020 she was seeing an acupuncturist, a chiropractor and a pain management doctor. All this in an effort to relieve some of the severe lower back and leg pains. The MRI results were not consistent with the level of pain and numbing Lily was experiencing. Weeks and months passed as she went to the different doctors. For every test ordered, her insurance company has to approve it. The pain and numbing was getting worse with each passing day. We took her to the ER on several occasions because her pain was unbearable. They would give her pain medications and send her home.
On Sunday, August 16, 2020, I came to see Lily and spend the day with her. She wasn't feeling well and just felt something was not right with her body. By late morning, she had lost control of her bowel movements. I immediately called Dr. Shah's office and we arranged to take her to Penn Medicine Princeton Medical Center's ER. Dr. Shah and his team are affiliated with Penn Medicine. After the first round of blood tests Lily was admitted to the hospital. After the first MRI, again of the top 3 sections of her spine, they ordered another MRI of the lower 2 sections, the Sacrum and the Coccyx. This second MRI showed the tumor that has been growing in her lower back for what could be years, possibly her whole life. Lily was diagnosed with Sacral Chordoma. It started in her coccyx and it has been growing upwards and has reached her lower sacrum and her spinal chord. This is the cause of her severe pain, numbing and loss of her bowel movements.
It was an uphill battle with her insurance company since Monday, August 17. Dr. Shah ordered her to be transferred to Hospital of the University of Pennsylvania for treatment. According to Dr. Shah, this was the number one place on the East Coast for proper care of her very rare condition. Her insurance denied it immediately. Dr. Shah appealed the decision, wrote emails and even spoke directly with the president of the insurance company. The insurance company finally approved the transfer on Thursday, August 20. Lily arrived at the Hospital of the University of Pennsylvania on Friday, August 21. She continues to be tested and her team of doctors is hopeful that they'll come up with a course of action very soon.
The options so far are surgery to remove as much of the tumor as they can. Another option is radiation therapy to shrink the size of the tumor, then perform surgery to remove what would then be a smaller tumor. Her team has not decided on a course of action as of Monday, August 24.
The funds raised by this will go directly to helping Lily and her immediate family. Her husband, which is the main provider of her family, has stopped working since Monday, August 17 to be by her side. Our mom, has also stopped working to be by Lily's side. As of this writing, Lily can walk with the use of her cane. But she needs help with all the little things you and I do without even thinking about it. The bills will not stop coming because of this. They still need to pay for a place to live, food and utilities. Further down the road they will also have incredible medical bills. Between Jonathan, her husband, and our mom, Marina, she is never alone. And we are all so thankful for that.
My name is Elayne Karen Vargas and I am Lily's only sister. Lily is 44 and I am 43. The people who know us know that we are each others best friend. For me, Lily is much more than a best friend. She is my soul mate. She is my absolute everything. Lily is the best human being I've ever met. She is the most sweet, lovable, kind and gentle person. She is giving. So much so that she has often been taken advantage of. She will give you all her time, attention, understanding and love. Just like that. Just because she can sense you need it. And she asks for absolutely nothing in return. She's a beautiful loving wife to Jonathan. She is the kindest loving mother to my two nephews, Alexander, who is 21 and Jonavan, who is 18. Alexander is currently in college and works a part time job. Jonavan just graduated high school in June and the "plan" is for him to start college in the winter. I say "plan" because so much is changing so quickly. They both live at home with their mom and step-dad, Jonathan. Our mother is staying with them since Lily started having her health issues. She has been a tremendous help to Lily and her family.
I don't want my sister to have to worry about the bills and expenses. All of her attention should go towards getting better. Once she eventually comes home, she will have a long road to recovery. Lily and I have our own unique way of dealing with life's up and downs. We get together and we talk and smile and eventually laugh. At absolutely everything. The kind of laughter that hurts your belly and in our case, makes you pee your pants. It's how we cope, deal with and heal. I want to hear my sister laugh that hard, my belly hurts, tears streaming down her cheeks laugh.
My hands tremble and my tears flow as I write this. I apologize in advance if I wrote too much. But I don't think anyone on this earth knows or begins to comprehend how much I love my sister.
Please help us if you can. #HelpingLily
https://en.wikipedia.org/wiki/Chordoma
Beginning in March 2020 Lily began to have severe lower back pain. The pains would shoot down her right or left leg. She was also experiencing numbing in her lower half. She went back to her Neurosurgeon, Dr. Nirav Shah. They began testing her again. At this time, we believed the cause of the pain and numbing to be associated with the lumbar section of her spine, since this was where the damage was (from car accident) and where the operation had focused on. The MRI took imaging of the top 3 sections of her spine: cervical, thoracic and lumbar. She was sent to pain management. By July 2020 she was seeing an acupuncturist, a chiropractor and a pain management doctor. All this in an effort to relieve some of the severe lower back and leg pains. The MRI results were not consistent with the level of pain and numbing Lily was experiencing. Weeks and months passed as she went to the different doctors. For every test ordered, her insurance company has to approve it. The pain and numbing was getting worse with each passing day. We took her to the ER on several occasions because her pain was unbearable. They would give her pain medications and send her home.
On Sunday, August 16, 2020, I came to see Lily and spend the day with her. She wasn't feeling well and just felt something was not right with her body. By late morning, she had lost control of her bowel movements. I immediately called Dr. Shah's office and we arranged to take her to Penn Medicine Princeton Medical Center's ER. Dr. Shah and his team are affiliated with Penn Medicine. After the first round of blood tests Lily was admitted to the hospital. After the first MRI, again of the top 3 sections of her spine, they ordered another MRI of the lower 2 sections, the Sacrum and the Coccyx. This second MRI showed the tumor that has been growing in her lower back for what could be years, possibly her whole life. Lily was diagnosed with Sacral Chordoma. It started in her coccyx and it has been growing upwards and has reached her lower sacrum and her spinal chord. This is the cause of her severe pain, numbing and loss of her bowel movements.
It was an uphill battle with her insurance company since Monday, August 17. Dr. Shah ordered her to be transferred to Hospital of the University of Pennsylvania for treatment. According to Dr. Shah, this was the number one place on the East Coast for proper care of her very rare condition. Her insurance denied it immediately. Dr. Shah appealed the decision, wrote emails and even spoke directly with the president of the insurance company. The insurance company finally approved the transfer on Thursday, August 20. Lily arrived at the Hospital of the University of Pennsylvania on Friday, August 21. She continues to be tested and her team of doctors is hopeful that they'll come up with a course of action very soon.
The options so far are surgery to remove as much of the tumor as they can. Another option is radiation therapy to shrink the size of the tumor, then perform surgery to remove what would then be a smaller tumor. Her team has not decided on a course of action as of Monday, August 24.
The funds raised by this will go directly to helping Lily and her immediate family. Her husband, which is the main provider of her family, has stopped working since Monday, August 17 to be by her side. Our mom, has also stopped working to be by Lily's side. As of this writing, Lily can walk with the use of her cane. But she needs help with all the little things you and I do without even thinking about it. The bills will not stop coming because of this. They still need to pay for a place to live, food and utilities. Further down the road they will also have incredible medical bills. Between Jonathan, her husband, and our mom, Marina, she is never alone. And we are all so thankful for that.
My name is Elayne Karen Vargas and I am Lily's only sister. Lily is 44 and I am 43. The people who know us know that we are each others best friend. For me, Lily is much more than a best friend. She is my soul mate. She is my absolute everything. Lily is the best human being I've ever met. She is the most sweet, lovable, kind and gentle person. She is giving. So much so that she has often been taken advantage of. She will give you all her time, attention, understanding and love. Just like that. Just because she can sense you need it. And she asks for absolutely nothing in return. She's a beautiful loving wife to Jonathan. She is the kindest loving mother to my two nephews, Alexander, who is 21 and Jonavan, who is 18. Alexander is currently in college and works a part time job. Jonavan just graduated high school in June and the "plan" is for him to start college in the winter. I say "plan" because so much is changing so quickly. They both live at home with their mom and step-dad, Jonathan. Our mother is staying with them since Lily started having her health issues. She has been a tremendous help to Lily and her family.
I don't want my sister to have to worry about the bills and expenses. All of her attention should go towards getting better. Once she eventually comes home, she will have a long road to recovery. Lily and I have our own unique way of dealing with life's up and downs. We get together and we talk and smile and eventually laugh. At absolutely everything. The kind of laughter that hurts your belly and in our case, makes you pee your pants. It's how we cope, deal with and heal. I want to hear my sister laugh that hard, my belly hurts, tears streaming down her cheeks laugh.
My hands tremble and my tears flow as I write this. I apologize in advance if I wrote too much. But I don't think anyone on this earth knows or begins to comprehend how much I love my sister.
Please help us if you can. #HelpingLily
https://en.wikipedia.org/wiki/Chordoma
Organizer and beneficiary
Elayne Karen Vargas
Organizer
Franklin Township, NJ
Liliana Mejia
Beneficiary