Fighting brain tumors one step at a time.
At four months old, Misha was diagnosed with a brain tumor. It snaked in and out of her brainstem and exploded into the rest of her brain. It took out most her cranial nerves on the right side of her face so she lost her ability to hear out of her right ear, move her face, and her right eye floated around like the die on the inside of a magic eight ball.
A day before she turned five months she had her first brain surgery. When she was done fighting her cancer Misha had over 13 surgeries, a ventriculoperitoneal shunting (surgery to relieve pressure in the skull do to hydrocephalus [water in the brain]), a bone marrow and stem cell transplant, and enough radiation to light up your house for a year.
She survived three tumor resections, tons of chemotherapy, a bone marrow and stem cell transplant, and 5200 centigrays of stereotactic radiotherapy. This does not include all the trips to the hospital for infections, high-grade fevers, or the dozen or so supportive surgeries she had to go through to put in a broviac or to fix the paralysis on the right side of her face.
The moment the neuro-radiologist at Hoag Hospital told my parents “your daughter has a brain tumor”, the direction of my life stopped being my own. And I was not even alive when it was spoken.
A day before she turned five months she had her first brain surgery. When she was done fighting her cancer Misha had over 13 surgeries, a ventriculoperitoneal shunting (surgery to relieve pressure in the skull do to hydrocephalus [water in the brain]), a bone marrow and stem cell transplant, and enough radiation to light up your house for a year.
She survived three tumor resections, tons of chemotherapy, a bone marrow and stem cell transplant, and 5200 centigrays of stereotactic radiotherapy. This does not include all the trips to the hospital for infections, high-grade fevers, or the dozen or so supportive surgeries she had to go through to put in a broviac or to fix the paralysis on the right side of her face.
The moment the neuro-radiologist at Hoag Hospital told my parents “your daughter has a brain tumor”, the direction of my life stopped being my own. And I was not even alive when it was spoken.
I put this blog together to share my family's story and the decision making process my parents used to help my sister survive a horrible disease. My parents learned more about brain tumors and all the possible treatments of brain tumors than any person should.
From the time I was I born, I have been given a front seat education to cancer and the toll the treatments had on Misha’s body and brain. Whether I knew it or not, from a young age I was being prepped to take care of Misha in case her cancer came back. The good news is that Misha is in remission. Despite her outcome, there were mistakes made by my parents and Misha’s many doctors. A good example is after Misha’s first surgery several doctors said that Misha’s tumor was a juvenile pilocytic astrocytoma and basically a benign (non-cancerous) tumor. She was safe. One month after her surgery, the tumor had quintupled in size, blocked the fourth ventricle in her brain (consider a ventricle like one of the canals in Venice, if blocked the water would have no place to go and Venice would flood). And that is the first lesson my father learned—understanding the true biology and behavior (pathology) of the brain tumor is the most critical aspect to determining treatment. |
That lesson is having the right team to advise you. Just as every hospital has a brain tumor board to discuss each case, you must have one as well. My father had 32 doctors and specialists on his team. Not all of them knew they were on his board, but all of them gave the advice he needed to make a decision.
There were many mistakes, but there was more good done than bad. And none of it was by accident. And all of it was dictated by my mother and father’s tenacity and understanding the brain tumor, the symptoms, and the talent they recruited to be on Misha’s team.
First and foremost you must have a complete understanding of the language of cancer. Click on types of brain tumors. Review the symptoms and possible treatments. You cannot make a proper decision unless you have basic understanding of what cancer is and how it works in the body.
The next step is to know the types of doctors that will directly or indirectly determine treatment for your child. After that you need to recruit your brain tumor board. I use that term loosely. Rather you are gathering a group doctors that will advise you when it is time to make a critical decision. For example: whether or not to do surgery or radiation. Your brain tumor board is not for the everyday decisions, like blood draws or how to treat an infection.
I have done much of the leg work for you. In terms of getting an understanding of brain tumors, it will never replace your child’s neurosurgeon, neuro-oncologist, or neurologist. You may have read it on the internet, but the odds are you have not brought up anything new. Regardless there is a chance that what you find combined with your doctor’s prescribed treatment and the love you have for your baby might move him or her closer to surviving their disease.
Never stop researching the disease that is threatening your kid and put together your own brain tumor board. Please understand one thing: you cannot expect the doctors to do all the work. You must research and research and research, and question and question until you get the result you want. And you cannot take forever. My dad read thousands of pages, hundreds of articles in the first week of Misha’s diagnosis just so he could make the right and best decisions for Misha. When he did that he was able to ask the right questions and understand the answers.
Where do you start? If your child has just been diagnosed start with understanding what cancer is, types of brain tumors, treatment for brain tumors, and then the brain tumor board. If you are in the middle and have been going at this awhile, start with the brain tumor board. Maybe you need a new perspective from a new set of ears.
For those of you who have survived the cancer and are now having to deal with the debilitating effects of the disease and treatments, you may want to start with education or life after treatment.
In this website I try to show where I found my research and put a link to the source at the end of each article. In the blog I will be interviewing doctors, writing on conferences, and discussing new research. In the News section, I will be placing links to news worthy articles and events. Please go through both to help in your research.
Lastly I am only an email away: [email protected]. As you can tell I am not new to this and I am great researcher, and will use what I do know and skills to help you. Whatever I do not know I will find out and point you in the right direction. If there is something I forgot to add or you feel is important, email me and I will put it in.
I am not a doctor. I am just a girl whose life was predetermined the moment a doctor discovered a tumor the size of golf ball that threatened my sister’s life. In this blog I will share with you Misha’s life and the way she overcame all her obstacles and how my family helped her survive a brainstem glioma.
Hopefully it will give you some insight and inspiration in your fight to help your baby overcome their brain tumor as well.
There were many mistakes, but there was more good done than bad. And none of it was by accident. And all of it was dictated by my mother and father’s tenacity and understanding the brain tumor, the symptoms, and the talent they recruited to be on Misha’s team.
First and foremost you must have a complete understanding of the language of cancer. Click on types of brain tumors. Review the symptoms and possible treatments. You cannot make a proper decision unless you have basic understanding of what cancer is and how it works in the body.
The next step is to know the types of doctors that will directly or indirectly determine treatment for your child. After that you need to recruit your brain tumor board. I use that term loosely. Rather you are gathering a group doctors that will advise you when it is time to make a critical decision. For example: whether or not to do surgery or radiation. Your brain tumor board is not for the everyday decisions, like blood draws or how to treat an infection.
I have done much of the leg work for you. In terms of getting an understanding of brain tumors, it will never replace your child’s neurosurgeon, neuro-oncologist, or neurologist. You may have read it on the internet, but the odds are you have not brought up anything new. Regardless there is a chance that what you find combined with your doctor’s prescribed treatment and the love you have for your baby might move him or her closer to surviving their disease.
Never stop researching the disease that is threatening your kid and put together your own brain tumor board. Please understand one thing: you cannot expect the doctors to do all the work. You must research and research and research, and question and question until you get the result you want. And you cannot take forever. My dad read thousands of pages, hundreds of articles in the first week of Misha’s diagnosis just so he could make the right and best decisions for Misha. When he did that he was able to ask the right questions and understand the answers.
Where do you start? If your child has just been diagnosed start with understanding what cancer is, types of brain tumors, treatment for brain tumors, and then the brain tumor board. If you are in the middle and have been going at this awhile, start with the brain tumor board. Maybe you need a new perspective from a new set of ears.
For those of you who have survived the cancer and are now having to deal with the debilitating effects of the disease and treatments, you may want to start with education or life after treatment.
In this website I try to show where I found my research and put a link to the source at the end of each article. In the blog I will be interviewing doctors, writing on conferences, and discussing new research. In the News section, I will be placing links to news worthy articles and events. Please go through both to help in your research.
Lastly I am only an email away: [email protected]. As you can tell I am not new to this and I am great researcher, and will use what I do know and skills to help you. Whatever I do not know I will find out and point you in the right direction. If there is something I forgot to add or you feel is important, email me and I will put it in.
I am not a doctor. I am just a girl whose life was predetermined the moment a doctor discovered a tumor the size of golf ball that threatened my sister’s life. In this blog I will share with you Misha’s life and the way she overcame all her obstacles and how my family helped her survive a brainstem glioma.
Hopefully it will give you some insight and inspiration in your fight to help your baby overcome their brain tumor as well.