(Editor's note: Earlier this year we published a story on Ceres cancer patient Madison Magee and her battle with a rare form of brain cancer. Her mother, Keri Magee, wrote this article as she reflects on the progression of Madison's illness as well as stress the need for parents to be mindful of insidious childhood cancers. We hope that our readers will keep Madison and her family in their thoughts and prayers in the coming days).
By KERI MAGEE
Special to the
Ceres (Calif.) Courier
For most parents September is all about back-to-school for their children, or making plans to enjoy the last of the warm weather. For me, this September holds different meaning. September is Childhood Cancer Awareness Month. As I begin this month I continue my daily watch over my child, hoping that she will live through September. She may not.
My daughter, Madison, was diagnosed with brain cancer June 17, 2008. The only signs were headaches and an unsteady walk for about two weeks, but the diagnosis was made when a CT scan was ordered. From that moment forward our family was thrust into a world unlike any other. Madison had surgery two days after diagnosis to remove the tumor, as it was creating a build up of fluid in her brain and causing the painful headaches. The surgery was successful and the tumor was removed, but we were told that her cancer was a very rare sarcoma that did not have a good prognosis.
Madison has battled cancer for the last 15 months with every part of her being. She has been through a total of 12 weeks of radiation, under anesthesia each time, and endured 11 months of chemotherapy. These treatments caused her to lose her red curls, become easily fatigued, experience nausea and vomiting, and need countless blood and platelet transfusions. Her immune system was also wiped out with each cycle of chemotherapy. This meant she had to wear a mask and remain isolated from others. For a 6 year old child this was very difficult. She could not go to the movies, or school, have playdates, or even be with her family most of the time. She remained isolated at a charitable house near the hospital in San Francisco with one parent, while the rest of the family was miles away at home in Ceres. Madison missed her entire year of first grade and spent many days in the hospital. She had surgery to have a central line inserted so she could get medications, blood, and platelets, without needing a poke each time. The line needed daily care and served as a constant reminder to her of her illness. Anytime she developed a fever this meant an emergency room visit.
In spite of all of the treatments Madison has had to endure, she has fought her cancer valiantly and has an amazing spirit. In so many ways Madison is just like any other 6 year old. She likes Hannah Montana, princesses, and Polly Pockets. She likes doing puzzles and loves the color green. She likes to play board games and help Grandpa feed the animals on his farm. She is a kind big sister. She loves school and karate classes. She enjoys watching baseball and going to the fair. Through all of this she is still that little girl that has needed to just be a little girl. Cancer has gotten in the way and taken many things from her.
On March 11, 2009, a routine follow up MRI showed that her cancer had returned, in spite of all the treatments she had just finished the month before. This was devastating news and very shocking since she did not have any new symptoms at the time. We were told that this time there were no treatments that were going to cure her. How does a parent accept that news? We entered new territory in an already difficult journey. How would we prepare to lose our child and what would that be like? How would we survive? We did not and do not know how to answer any of these questions. We immediately took Madison and her sister to Disneyland as they had never been and we focused on spending the most time together as a family that we could. We decided we would make the rest of Madison's short life as full as it could be. Family, friends, and community have helped with this.
Madison had several very good months after we were told her disease was terminal, but the cancer is beginning to take over her body. We can now visibly see changes in her. Her walk is again affected, her right eye will not move all the way to the side anymore and her left eyelid does not close all the way, causing her eye to water. She can no longer smile or use a straw, has little energy, and wakes up vomiting many days. Yet, somehow she musters up enough energy to attend three hours of school each day, because she loves being there. By the time we pick her up she often needs to be carried to the car and spends the rest of her afternoon on the couch. We likely have days to weeks left with her in this life. We wrestle with decisions all the time about medications to add to her regimen, or what to tell her and her sister about her disease. How do you tell a 6 year old she is dying? And what do you explain to her 4 year old sister as she watches this and wonders? We don't know, but each day we find opportunities to share the information that is needed or that they seek. We are working with hospice on how to do this, but there is no perfect answer.
In a perfect world, my child would not be dying so young. We can only hope that Madison's passing comes peacefully and that she is not afraid, but no one can guarantee these things.
I am sharing our story to bring awareness to this disease. I feel obligated as Madison's mother to make sure that our children are noticed so they do not die without making an imprint on this world, and without people knowing that children get cancer. Approximately 46 children are diagnosed with cancer in the U.S. everyday. There are effective treatments for some, but there are over 200 childhood cancers, and each needs a different form of treatment. I will always advocate for more research to be done into childhood cancer causes and treatments. That is something that people can do. But there are many things that anyone can do to make a difference. I do not think most people know that a gold ribbon represents childhood cancer. I did not know this until my child was diagnosed.
So, wear a gold ribbon to show your support in September. Take the time to talk with just one person about childhood cancer, so more people know it exists and is the number one disease killer of children. Visit a children's oncology hospital unit and volunteer, or donate hats or activities for the children, who spend weeks in the hospital sometimes.
There are other children fighting cancer in our community. I have met many of them. Take the time to help one family, whether that is with help with bills, or transportation to appointments, or meals when they are too tired to cook, or to just be a shoulder to lean on. I think that many people don't know what to say or do when faced with something as tragic as a child dying of cancer, but the truth is that there is no right choice. Nothing anyone says or does can ease the pain we are experiencing or the grief we will endure for the rest of our lives. Yet, just hearing from someone that they are thinking of us helps me through each day. And, please do not forget the children who survive this disease. Surviving childhood cancer often carries its own set of challenges. Often the treatment alone has effects that last a lifetime and that those individuals need support with. I ask you to please not read our story and simply think about how tragic it is, but, instead, take a moment to think of something you can do to create awareness about childhood cancer, even if it is just taking a moment to share this with someone else.
I close this with a heartfelt thank you to everyone in our community who supports us as we near the end of Madison's life. The people who have reached out to us have truly renewed our belief in the kindness of others and have made some of our darkest days a little more bearable.
By KERI MAGEE
Special to the
Ceres (Calif.) Courier
For most parents September is all about back-to-school for their children, or making plans to enjoy the last of the warm weather. For me, this September holds different meaning. September is Childhood Cancer Awareness Month. As I begin this month I continue my daily watch over my child, hoping that she will live through September. She may not.
My daughter, Madison, was diagnosed with brain cancer June 17, 2008. The only signs were headaches and an unsteady walk for about two weeks, but the diagnosis was made when a CT scan was ordered. From that moment forward our family was thrust into a world unlike any other. Madison had surgery two days after diagnosis to remove the tumor, as it was creating a build up of fluid in her brain and causing the painful headaches. The surgery was successful and the tumor was removed, but we were told that her cancer was a very rare sarcoma that did not have a good prognosis.
Madison has battled cancer for the last 15 months with every part of her being. She has been through a total of 12 weeks of radiation, under anesthesia each time, and endured 11 months of chemotherapy. These treatments caused her to lose her red curls, become easily fatigued, experience nausea and vomiting, and need countless blood and platelet transfusions. Her immune system was also wiped out with each cycle of chemotherapy. This meant she had to wear a mask and remain isolated from others. For a 6 year old child this was very difficult. She could not go to the movies, or school, have playdates, or even be with her family most of the time. She remained isolated at a charitable house near the hospital in San Francisco with one parent, while the rest of the family was miles away at home in Ceres. Madison missed her entire year of first grade and spent many days in the hospital. She had surgery to have a central line inserted so she could get medications, blood, and platelets, without needing a poke each time. The line needed daily care and served as a constant reminder to her of her illness. Anytime she developed a fever this meant an emergency room visit.
In spite of all of the treatments Madison has had to endure, she has fought her cancer valiantly and has an amazing spirit. In so many ways Madison is just like any other 6 year old. She likes Hannah Montana, princesses, and Polly Pockets. She likes doing puzzles and loves the color green. She likes to play board games and help Grandpa feed the animals on his farm. She is a kind big sister. She loves school and karate classes. She enjoys watching baseball and going to the fair. Through all of this she is still that little girl that has needed to just be a little girl. Cancer has gotten in the way and taken many things from her.
On March 11, 2009, a routine follow up MRI showed that her cancer had returned, in spite of all the treatments she had just finished the month before. This was devastating news and very shocking since she did not have any new symptoms at the time. We were told that this time there were no treatments that were going to cure her. How does a parent accept that news? We entered new territory in an already difficult journey. How would we prepare to lose our child and what would that be like? How would we survive? We did not and do not know how to answer any of these questions. We immediately took Madison and her sister to Disneyland as they had never been and we focused on spending the most time together as a family that we could. We decided we would make the rest of Madison's short life as full as it could be. Family, friends, and community have helped with this.
Madison had several very good months after we were told her disease was terminal, but the cancer is beginning to take over her body. We can now visibly see changes in her. Her walk is again affected, her right eye will not move all the way to the side anymore and her left eyelid does not close all the way, causing her eye to water. She can no longer smile or use a straw, has little energy, and wakes up vomiting many days. Yet, somehow she musters up enough energy to attend three hours of school each day, because she loves being there. By the time we pick her up she often needs to be carried to the car and spends the rest of her afternoon on the couch. We likely have days to weeks left with her in this life. We wrestle with decisions all the time about medications to add to her regimen, or what to tell her and her sister about her disease. How do you tell a 6 year old she is dying? And what do you explain to her 4 year old sister as she watches this and wonders? We don't know, but each day we find opportunities to share the information that is needed or that they seek. We are working with hospice on how to do this, but there is no perfect answer.
In a perfect world, my child would not be dying so young. We can only hope that Madison's passing comes peacefully and that she is not afraid, but no one can guarantee these things.
I am sharing our story to bring awareness to this disease. I feel obligated as Madison's mother to make sure that our children are noticed so they do not die without making an imprint on this world, and without people knowing that children get cancer. Approximately 46 children are diagnosed with cancer in the U.S. everyday. There are effective treatments for some, but there are over 200 childhood cancers, and each needs a different form of treatment. I will always advocate for more research to be done into childhood cancer causes and treatments. That is something that people can do. But there are many things that anyone can do to make a difference. I do not think most people know that a gold ribbon represents childhood cancer. I did not know this until my child was diagnosed.
So, wear a gold ribbon to show your support in September. Take the time to talk with just one person about childhood cancer, so more people know it exists and is the number one disease killer of children. Visit a children's oncology hospital unit and volunteer, or donate hats or activities for the children, who spend weeks in the hospital sometimes.
There are other children fighting cancer in our community. I have met many of them. Take the time to help one family, whether that is with help with bills, or transportation to appointments, or meals when they are too tired to cook, or to just be a shoulder to lean on. I think that many people don't know what to say or do when faced with something as tragic as a child dying of cancer, but the truth is that there is no right choice. Nothing anyone says or does can ease the pain we are experiencing or the grief we will endure for the rest of our lives. Yet, just hearing from someone that they are thinking of us helps me through each day. And, please do not forget the children who survive this disease. Surviving childhood cancer often carries its own set of challenges. Often the treatment alone has effects that last a lifetime and that those individuals need support with. I ask you to please not read our story and simply think about how tragic it is, but, instead, take a moment to think of something you can do to create awareness about childhood cancer, even if it is just taking a moment to share this with someone else.
I close this with a heartfelt thank you to everyone in our community who supports us as we near the end of Madison's life. The people who have reached out to us have truly renewed our belief in the kindness of others and have made some of our darkest days a little more bearable.
