In early 2020, one of my closest friends introduced me to her niece, Elise, one of the sweetest, most mature, talented 12-year-olds I have ever met. She talked of her love of art, travel, and the Korean boy band, BTS, and told me about her love of animals and her desire to one day visit Japan to go to one of the “cat islands”. I asked her what she wanted to be when she grew up and her response amazed me, “I’m not exactly sure what I want to do, but I do know that I want to help the world, whether it’s animals, marine life, starving people, the environment, or, … who knows.” From that moment on I was captivated by this beautiful (inside and out) child and wanted to continue our conversation to learn more about her.
What I later learned is that Elise had been having bad headaches and some blurred vision with increasing frequency since the end of November 2019. Doctors weren’t sure of the cause but on New Year’s Eve her eye doctor saw swelling in the brain causing pressure on Elise’s eyes, resulting in the headaches and blurred vision. An MRI revealed a mass that was blocking her brain’s drainage channels and she was rushed to Boston’s Children’s Hospital to have emergency surgery to drain the built-up fluid and have a biopsy taken. Waiting for her results was torturous for me, and I had just met her. Her mother, Sue, though terrified for her daughter’s life, maintained her composure to try to spare Elise the fear that was sure to ensue.
When the news finally came in they learned that Elise is suffering from Embroynal Rhabdomyosarcoma, a rare form (1.5 cases per 1 million adolescents, and even fewer when this is in the brain) of cancer in adolescents that starts in the cells that develop into skeletal muscle cells. The news was awful. She had cancer, and had lost her father to cancer when she was only 8 years old. The instant the doctor gave Elise her diagnosis her life was changed forever. Sue felt mortal terror, but struggled to remain strong to calm Elise’s fears that cancer might take her life, too. After the initial shock, Elise, in turn, rather than feel sorry for herself, concentrated on taking care of her mom to make sure she was okay, and was more concerned with others’ comfort when they visited her in the hospital or clinic than with her own. It is in those moments that Elise’s incredible character, caring nature and sweet soul all shone through.
Unfortunately, given the rarity of this cancer, the doctors have been unable to give Elise a prognosis. What they were able to tell her family was that it was an extremely aggressive, fast growing cancer that requires intense treatment including chemotherapy and radiation. Given the tumor’s location in her brain, surgery was not an option, as it could result in permanent impairment or coma. Elise was put on a treatment plan that would be horrific and debilitating for any adult, and she was only 12 years old. She had to have radiation treatments 5 days/week for 6 weeks, surgery to remove an ovary and insert a chemo port, bone marrow biopsies, spinal taps, lumbar punctures, constant blood tests and scans, followed by many cycles of maximum-tolerated dose chemotherapy.
She has had to endure the horrific side effects from the treatments she needed to survive. She suffered weight loss that necessitated a feeding tube, complete hair loss, and severe neuropathy in her feet causing such massive pain that she had to take several of the strongest pain medications available. She stopped walking altogether due to the nerve damage and lost all of her leg muscles. She is working hard every single day to get back on her feet. Elise’s strength and courage throughout this painful journey is nothing short of inspirational.
The good news is that this wasn’t all for nothing. The tumor has shrunk enough that Elise has been able to stop chemotherapy for now! Although it is still there, it doesn’t appear to be growing or interfering with anything at this time. Based on the severity of Elise's diagnosis though, the risk of recurrence is high. Elise and her family are facing a lifelong battle of worrying “what if this comes back?” She and her mom are doing everything they can to keep it at bay while also trying to allow Elise to now have a normal, happy childhood.
Although we can’t do anything about Elise's cancer, we can help with the huge financial burden that has been placed on the family. During this crisis, Sue, a single mother, has been unable to work at all. All of 2020, she has been needed 24-hours a day to feed Elise, help her in the bathroom, bathe her, give her all her different medications at all different prescribed times, run back and forth to the hospital and ER when fevers came up, massage her legs and feet to try to reduce the pain, and basically act as her mom, nurse, friend, entertainer, and support system, all while being devastated and hanging on by a string emotionally. Her savings have already been depleted and the debt is piling up. Without help, they will be starting 2021 in a deep financial hole, and that is before the medical bills come in for the continuing treatment she will need for years to come. Financial stress is debilitating in every way and there is no way Sue will be able to hide this from Elise, who is extremely sensitive and intuitive.
We hope that you will help build a support system for Elise and her family so they can concentrate on her health and well-being rather than having to worry about their financial needs moving forward. Please donate! No amount is too small (or too large). Every penny will go to the family to help support them and lighten their load as they navigate this difficult road together.
“Alone we can do so little; together we can do so much.” – Helen Keller
What I later learned is that Elise had been having bad headaches and some blurred vision with increasing frequency since the end of November 2019. Doctors weren’t sure of the cause but on New Year’s Eve her eye doctor saw swelling in the brain causing pressure on Elise’s eyes, resulting in the headaches and blurred vision. An MRI revealed a mass that was blocking her brain’s drainage channels and she was rushed to Boston’s Children’s Hospital to have emergency surgery to drain the built-up fluid and have a biopsy taken. Waiting for her results was torturous for me, and I had just met her. Her mother, Sue, though terrified for her daughter’s life, maintained her composure to try to spare Elise the fear that was sure to ensue.
When the news finally came in they learned that Elise is suffering from Embroynal Rhabdomyosarcoma, a rare form (1.5 cases per 1 million adolescents, and even fewer when this is in the brain) of cancer in adolescents that starts in the cells that develop into skeletal muscle cells. The news was awful. She had cancer, and had lost her father to cancer when she was only 8 years old. The instant the doctor gave Elise her diagnosis her life was changed forever. Sue felt mortal terror, but struggled to remain strong to calm Elise’s fears that cancer might take her life, too. After the initial shock, Elise, in turn, rather than feel sorry for herself, concentrated on taking care of her mom to make sure she was okay, and was more concerned with others’ comfort when they visited her in the hospital or clinic than with her own. It is in those moments that Elise’s incredible character, caring nature and sweet soul all shone through.
Unfortunately, given the rarity of this cancer, the doctors have been unable to give Elise a prognosis. What they were able to tell her family was that it was an extremely aggressive, fast growing cancer that requires intense treatment including chemotherapy and radiation. Given the tumor’s location in her brain, surgery was not an option, as it could result in permanent impairment or coma. Elise was put on a treatment plan that would be horrific and debilitating for any adult, and she was only 12 years old. She had to have radiation treatments 5 days/week for 6 weeks, surgery to remove an ovary and insert a chemo port, bone marrow biopsies, spinal taps, lumbar punctures, constant blood tests and scans, followed by many cycles of maximum-tolerated dose chemotherapy.
She has had to endure the horrific side effects from the treatments she needed to survive. She suffered weight loss that necessitated a feeding tube, complete hair loss, and severe neuropathy in her feet causing such massive pain that she had to take several of the strongest pain medications available. She stopped walking altogether due to the nerve damage and lost all of her leg muscles. She is working hard every single day to get back on her feet. Elise’s strength and courage throughout this painful journey is nothing short of inspirational.
The good news is that this wasn’t all for nothing. The tumor has shrunk enough that Elise has been able to stop chemotherapy for now! Although it is still there, it doesn’t appear to be growing or interfering with anything at this time. Based on the severity of Elise's diagnosis though, the risk of recurrence is high. Elise and her family are facing a lifelong battle of worrying “what if this comes back?” She and her mom are doing everything they can to keep it at bay while also trying to allow Elise to now have a normal, happy childhood.
Although we can’t do anything about Elise's cancer, we can help with the huge financial burden that has been placed on the family. During this crisis, Sue, a single mother, has been unable to work at all. All of 2020, she has been needed 24-hours a day to feed Elise, help her in the bathroom, bathe her, give her all her different medications at all different prescribed times, run back and forth to the hospital and ER when fevers came up, massage her legs and feet to try to reduce the pain, and basically act as her mom, nurse, friend, entertainer, and support system, all while being devastated and hanging on by a string emotionally. Her savings have already been depleted and the debt is piling up. Without help, they will be starting 2021 in a deep financial hole, and that is before the medical bills come in for the continuing treatment she will need for years to come. Financial stress is debilitating in every way and there is no way Sue will be able to hide this from Elise, who is extremely sensitive and intuitive.
We hope that you will help build a support system for Elise and her family so they can concentrate on her health and well-being rather than having to worry about their financial needs moving forward. Please donate! No amount is too small (or too large). Every penny will go to the family to help support them and lighten their load as they navigate this difficult road together.
“Alone we can do so little; together we can do so much.” – Helen Keller