Bella's Brain Cancer Fund
Donation protected
My daughter Bella is fighting malignant brain cancer with grace, positivity, and compassion.
In spite of three surgeries within a year, six weeks of radiation, three types of chemotherapy, and high doses of steroids, she gets up everyday looking forward to life and helping others. She is studying to become a therapist, has a passion for black and white film photography, and would like nothing better than to rescue every dog who needs a home. She is hilarious and loves to make people laugh. This young woman is a light in the world.
As a single parent working full time, the responsibility of managing and financing her treatment and everyday care is overwhelming. There is hope and progress (please read her story below), but we need your help. At some point, most of you have probably looked at a medical bill and thought ‘thank goodness my insurance company is covering this.’ Now imagine they don’t cover it, and the bills keep coming. That’s our situation.
I am a proud person, but cancer has taught me that pride is not strength – the ability to reach out and grab another hand…that is true strength. Human kindness and compassion are the glue that keeps the world together. I always feel so happy to help someone in need when I can, and I’m hoping that you feel the same. We are appreciative of all contributions, large and small, as each helps us on our journey.
Not only do you help financially with Bella’s care, but each act of kindness is like a hug and a high five of encouragement … in the end, those are the most important things of all.
Thank you so much for your help. Please share her story with others during this season of love and giving.
For the full story of our difficult and loving brain cancer journey, please keep reading...
Bella was diagnosed July 29, 2015, but like others with brain cancer, it was a long time coming. In hindsight, the signs were all there, but for years, no one put the pieces together. Increasingly severe headaches, eyesight deterioration, confusion and inability to concentrate, weakness in her knees, pain in walking, and in the final few months before diagnosis, constant nausea and frequent vomiting. At last, we were referred to a neurologist. Thirty minutes into the appointment, he turned to us and said there was a mass on the right side of her brain, and we were to proceed directly to the local hospital. “Don’t stop for lunch,” he said.
We drove in stunned silence. Upon arrival, she was whisked into an MRI machine. Later, a doctor came in looking somber. He handed us a picture, which showed a large, luminous object on one side of her brain. A knot formed in my stomach. “We are scheduling Bella for surgery asap,” he stated. Two days later, she was in the hands of an amazing surgeon for 12 long hours.
Afterwards, he sat with us and assured us that he had removed as much as he could without causing permanent damage to the left side of her body. The tumor had grown around a major blood vessel, making the surgery more dangerous. He encouraged us to consult a neuro-oncologist as quickly as possible to discuss treatment options. This superhero in blue scrubs promised he would perform any future surgeries that Bella might need…prophetic words, as she had 2 more surgeries in less than a year, the final one lasting 17 hours.
The next day, during Bella’s recovery in ICU, one of the nurses said it was the largest brain tumor she’d seen in her 20-year career. It must have developed over a long period of time, she explained, allowing Bella’s body to gradually adjust to the growing mass in her brain. If it had grown to this size quickly, Bella would not have been able to function….and given a few more weeks of growth, Bella would likely have died. We caught it just in time. I lost both my parents the previous year, and have no doubt they were part of the miraculous series of steps that finally brought us to the right people at the right time.
Less than 2 months after her first major brain surgery, Bella started her senior year of high school with a massive scar still visible. Did she hide? Nope. Okay, she did wear a cute lavender wig to school, but when it was picture time, she took an beautiful senior portrait without the wig. “I want to,” she said, “I’m proud of my scar – it reminds me that I survived.”
She started writing a blog about her experience (thejourneyofmesite.com), sharing the good, the bad, and the humorous sides of cancer. Early on she wrote an excellent piece with advice for other cancer warriors (and those who wish to support them), offering encouragement for what lays ahead in their fight. She is an empathetic young woman, always seeing others’ pain and wanting to help them get through it.
Originally diagnosed as a JPA tumor - benign and slow-growing – this beast of a tumor kept coming back…and quickly. She was put on 2 different chemotherapies, neither of which helped. After the third grueling surgery, tissue was sent out for a repeat analysis. The results from 2 separate research centers came to the same conclusion…the tumor had mutated into a PXA, malignant and highly aggressive. Stage 3. The news was hard to hear, but Bella resolved to continue the fight, confident she would beat it. And I believe, with your help, she will.
Only 2 months after her third surgery, she walked the stage at her high school graduation – a moment neither of us will forget. Unbeknownst to her, the class conspired to give her a standing ovation as her name was called. You can see the video of this below (having trouble linking - shortly) – it was truly one of the most beautiful moments in our lives. It was the best medicine in the world for Bella to feel so utterly recognized and embraced by her classmates.
Afterwards, she spent the summer in a 6-week round of daily radiation, with the exhaustion and hair loss that results.
The good news is, her hair is finally growing back – by spring, she will have a pixie! And while she’s been hospitalized a couple of times in the last few months, her tumor has not changed in size. While that may not seem like good news, it absolutely is, given how quickly it had grown in the past. She is on a new chemotherapy regimen that targets the specific genetic mutation of her tumor – it’s like having a therapy designed just for her. We are very hopeful that between this new chemotherapy and the talents of her surgeon, Bella will enter remission in the next year or two, and move forward to achieve her dreams. There is much to be thankful for in our world, including friends and family who have been with us through it all.
Every day we both wake up grateful for each other and the simplest of things….a good latte, a text from a friend, a funny post on Facebook, dinner with family. Bella is looking forward to her birthday, learning American Sign Language next semester, attending her photography program (shout out to First Exposures, her second family), and working on a book. A book?....Yep, late one night in the hospital, we decided to write a children’s book about cancer. We can’t wait till you can read it. (We wrote a baking book together when she was 8 that was an award finalist ).
And yet, the cost of her care is staggering. While I do have health insurance, there are medicines, procedures, medical professionals, and many attending costs that are not covered. So far, I’ve missed 2 months of work, and the accompanying salary. Some doctors, therapists, and attending professionals do not take insurance – paying out of pocket for medical care can be thousands of dollars for each professional, while medications not covered are hundreds of dollars every week…and this will continue into the future. In addition, Bella cannot drive yet, due to her surgeries and medications. This means that while I’m at work, she needs to take Uber to her appointments and college, as crowded public transportation is dangerous for the immuno-compromised. It doesn’t seem like much, but 3-5 roundtrips a week add up quickly. Serious illness is an expensive experience.
A friend and former student, who is now an accomplished pastry chef, held a bake sale for Bella and donated the proceeds to us. We loved that idea, and held one of our own (photos below). If you enjoy baking, it’s a fun way to help our cause. If you prefer cooking, perhaps a dinner around your table with friends could raise funds. I know, I know, I’m always thinking of food – it’s an occupational hazard. I wish I could invite you all over to join us.
Each of you who feels moved to give – in whatever manner works for you – is connected to us, and to Bella’s healing, in a real and intimate way. You are creating light in the world, just like my daughter. Thank you for taking the time to read this.
Thank you for donating and sharing her story with others who can help us.
We wish you love, laughter and health.
In spite of three surgeries within a year, six weeks of radiation, three types of chemotherapy, and high doses of steroids, she gets up everyday looking forward to life and helping others. She is studying to become a therapist, has a passion for black and white film photography, and would like nothing better than to rescue every dog who needs a home. She is hilarious and loves to make people laugh. This young woman is a light in the world.
As a single parent working full time, the responsibility of managing and financing her treatment and everyday care is overwhelming. There is hope and progress (please read her story below), but we need your help. At some point, most of you have probably looked at a medical bill and thought ‘thank goodness my insurance company is covering this.’ Now imagine they don’t cover it, and the bills keep coming. That’s our situation.
I am a proud person, but cancer has taught me that pride is not strength – the ability to reach out and grab another hand…that is true strength. Human kindness and compassion are the glue that keeps the world together. I always feel so happy to help someone in need when I can, and I’m hoping that you feel the same. We are appreciative of all contributions, large and small, as each helps us on our journey.
Not only do you help financially with Bella’s care, but each act of kindness is like a hug and a high five of encouragement … in the end, those are the most important things of all.
Thank you so much for your help. Please share her story with others during this season of love and giving.
For the full story of our difficult and loving brain cancer journey, please keep reading...
Bella was diagnosed July 29, 2015, but like others with brain cancer, it was a long time coming. In hindsight, the signs were all there, but for years, no one put the pieces together. Increasingly severe headaches, eyesight deterioration, confusion and inability to concentrate, weakness in her knees, pain in walking, and in the final few months before diagnosis, constant nausea and frequent vomiting. At last, we were referred to a neurologist. Thirty minutes into the appointment, he turned to us and said there was a mass on the right side of her brain, and we were to proceed directly to the local hospital. “Don’t stop for lunch,” he said.
We drove in stunned silence. Upon arrival, she was whisked into an MRI machine. Later, a doctor came in looking somber. He handed us a picture, which showed a large, luminous object on one side of her brain. A knot formed in my stomach. “We are scheduling Bella for surgery asap,” he stated. Two days later, she was in the hands of an amazing surgeon for 12 long hours.
Afterwards, he sat with us and assured us that he had removed as much as he could without causing permanent damage to the left side of her body. The tumor had grown around a major blood vessel, making the surgery more dangerous. He encouraged us to consult a neuro-oncologist as quickly as possible to discuss treatment options. This superhero in blue scrubs promised he would perform any future surgeries that Bella might need…prophetic words, as she had 2 more surgeries in less than a year, the final one lasting 17 hours.
The next day, during Bella’s recovery in ICU, one of the nurses said it was the largest brain tumor she’d seen in her 20-year career. It must have developed over a long period of time, she explained, allowing Bella’s body to gradually adjust to the growing mass in her brain. If it had grown to this size quickly, Bella would not have been able to function….and given a few more weeks of growth, Bella would likely have died. We caught it just in time. I lost both my parents the previous year, and have no doubt they were part of the miraculous series of steps that finally brought us to the right people at the right time.
Less than 2 months after her first major brain surgery, Bella started her senior year of high school with a massive scar still visible. Did she hide? Nope. Okay, she did wear a cute lavender wig to school, but when it was picture time, she took an beautiful senior portrait without the wig. “I want to,” she said, “I’m proud of my scar – it reminds me that I survived.”
She started writing a blog about her experience (thejourneyofmesite.com), sharing the good, the bad, and the humorous sides of cancer. Early on she wrote an excellent piece with advice for other cancer warriors (and those who wish to support them), offering encouragement for what lays ahead in their fight. She is an empathetic young woman, always seeing others’ pain and wanting to help them get through it.
Originally diagnosed as a JPA tumor - benign and slow-growing – this beast of a tumor kept coming back…and quickly. She was put on 2 different chemotherapies, neither of which helped. After the third grueling surgery, tissue was sent out for a repeat analysis. The results from 2 separate research centers came to the same conclusion…the tumor had mutated into a PXA, malignant and highly aggressive. Stage 3. The news was hard to hear, but Bella resolved to continue the fight, confident she would beat it. And I believe, with your help, she will.
Only 2 months after her third surgery, she walked the stage at her high school graduation – a moment neither of us will forget. Unbeknownst to her, the class conspired to give her a standing ovation as her name was called. You can see the video of this below (having trouble linking - shortly) – it was truly one of the most beautiful moments in our lives. It was the best medicine in the world for Bella to feel so utterly recognized and embraced by her classmates.
Afterwards, she spent the summer in a 6-week round of daily radiation, with the exhaustion and hair loss that results.
The good news is, her hair is finally growing back – by spring, she will have a pixie! And while she’s been hospitalized a couple of times in the last few months, her tumor has not changed in size. While that may not seem like good news, it absolutely is, given how quickly it had grown in the past. She is on a new chemotherapy regimen that targets the specific genetic mutation of her tumor – it’s like having a therapy designed just for her. We are very hopeful that between this new chemotherapy and the talents of her surgeon, Bella will enter remission in the next year or two, and move forward to achieve her dreams. There is much to be thankful for in our world, including friends and family who have been with us through it all.
Every day we both wake up grateful for each other and the simplest of things….a good latte, a text from a friend, a funny post on Facebook, dinner with family. Bella is looking forward to her birthday, learning American Sign Language next semester, attending her photography program (shout out to First Exposures, her second family), and working on a book. A book?....Yep, late one night in the hospital, we decided to write a children’s book about cancer. We can’t wait till you can read it. (We wrote a baking book together when she was 8 that was an award finalist ).
And yet, the cost of her care is staggering. While I do have health insurance, there are medicines, procedures, medical professionals, and many attending costs that are not covered. So far, I’ve missed 2 months of work, and the accompanying salary. Some doctors, therapists, and attending professionals do not take insurance – paying out of pocket for medical care can be thousands of dollars for each professional, while medications not covered are hundreds of dollars every week…and this will continue into the future. In addition, Bella cannot drive yet, due to her surgeries and medications. This means that while I’m at work, she needs to take Uber to her appointments and college, as crowded public transportation is dangerous for the immuno-compromised. It doesn’t seem like much, but 3-5 roundtrips a week add up quickly. Serious illness is an expensive experience.
A friend and former student, who is now an accomplished pastry chef, held a bake sale for Bella and donated the proceeds to us. We loved that idea, and held one of our own (photos below). If you enjoy baking, it’s a fun way to help our cause. If you prefer cooking, perhaps a dinner around your table with friends could raise funds. I know, I know, I’m always thinking of food – it’s an occupational hazard. I wish I could invite you all over to join us.
Each of you who feels moved to give – in whatever manner works for you – is connected to us, and to Bella’s healing, in a real and intimate way. You are creating light in the world, just like my daughter. Thank you for taking the time to read this.
Thank you for donating and sharing her story with others who can help us.
We wish you love, laughter and health.
Organizer and beneficiary
Cindy Mushet
Organizer
Albany, CA
Isabella Robinson
Beneficiary