Here is an article I wrote which will be posted on www.coolpeoplecare.com to help raise public awareness of childhood cancer month...This fall my five-year-old son began Kindergarten.
A big step for any parent, but for my husband and me, this small step is particularly poignant. Our five-year-old son is one of a growing number of childhood cancer survivors. On Christmas day 2002, exactly one week before his first birthday, he was diagnosed with a malignant tumor in his sinus cavity. At the time it was hard to imagine him reaching his second birthday, let alone boarding a school bus heading to school.
A big step for any parent, but for my husband and me, this small step is particularly poignant. Our five-year-old son is one of a growing number of childhood cancer survivors. On Christmas day 2002, exactly one week before his first birthday, he was diagnosed with a malignant tumor in his sinus cavity. At the time it was hard to imagine him reaching his second birthday, let alone boarding a school bus heading to school.
I am trying to savor this very bitter sweet moment, but I find that the feelings of guilt that it evokes can become overwhelming. Gabriel was not able to contribute to the decisions that were made about his treatment, so I can only pray that he will grow to understand the choices we made.
Gabe suffers, as all childhood cancer survivors do, from long term effects of the very treatment that saved his life. Some of his problems are subtle, such as the speech defects from surgeries and cognitive side effects of radiation. Other issues grow more glaring as he ages. Radiation treatment has caused the right side of Gabe’s jaw to stop growing, as his head continues to grow his face becomes more distorted. Rob and I have worked hard to instill in him the virtues of being a sweet and polite vs. cute, but that rhetoric doesn’t hold too much water when you are being teased by your peers. Gabe has a very healthy self worth and I am confident in his ability to “hold his own” but, thinking of him being teased breaks my heart all the same. Together we will face all the surgeries and teasing and I’m sure it will bring us closer as a family, but there will always be a part of me that resents the fact that this ordeal never seems to be over.
The biggest part of my heart, however, understands all too well that every single hurdle we have to overcome is a blessing. We have the luxury of complaint because we still have our child. Without the great advances in the treatment of childhood cancer, we would be silently weeping by a grave, instead of swallowing a lump of pride as he boards the school bus.
Survival rates for childhood cancer have risen sharply over the past 20 years. In the United States, more than 75 percent of children with cancer are now alive five years after diagnosis, compared with about 60 percent in the mid-1970s.
However, the unfortunate truth is that as the rates of survival increase, so do the number of children diagnosed.
Over the past 20 years, there has been an increase in the incidence of children diagnosed with all forms of invasive cancer; from 11.4 cases per 100,000 children in 1975 to 15.2 per 100,000 children in 1998.*
Because of the growing demographic of childhood cancer survivors, there have been great strides made in recognizing and treating the after effects of chemotherapy and radiation. There is an understanding now that treating children with cancer does not end with the conclusion chemotherapy. As a result, a growing number of Survivorship clinics are cropping up around the country.
There is also an increasing understanding of the social and psychological consequences of cancer treatment; young adults especially can experience feelings of isolation and depression.
Gilda’s Club of Nashville is working closely with Vanderbilt Hospital to assist young adults, who are juggling the difficulties of college life and finding employment while dealing with the myriad of health issues left over from cancer treatment.
My family is truly blessed, Gabe survived his brush with cancer and his side effects are minimal compared to the challenges that many other children face. He had the privilege of becoming one of the very first patients at the Survivorship clinic at Monroe Carell Jr Children’s Hospital at Vanderbilt. The staff there is actively tracking the long term effects of his treatment. They have also educated me to the fact that some of Gabe’s “quirks” are not “just Gabe”, they are well documented cognitive “late term effects” of radiation to the skull. Although the number childhood cancer survivors is swelling, there is still a great need for better medicines. Every child facing cancer treatment should be assured not only of survival, but also of minimal side effects from treatment.
As Gabe begins this new chapter of his life, we are mindful of the fact that his survival rests squarely on the shoulders of those children who did not survive, children whose stories are forever interwoven with ours, like the intricate pattern of a rug.
In honor of Gabe’s battle my family started a non profit dedicated to educate and assist families facing childhood cancer. During September, childhood cancer month, we ask that you take a minute to visit our website to read about ways you can reach out to help families in crisis.
http://www.gabesmyheart.com/
To join the growing advocacy movement supporting childhood cancer please visit the curesearch website
http://www.curesearch.org/support_curesearch/raise_awareness/
*Information compiled from both Cancer.gov, the Web site of the National Cancer Institute, and cancer.org, the Web site of the American Cancer Society
Gabe suffers, as all childhood cancer survivors do, from long term effects of the very treatment that saved his life. Some of his problems are subtle, such as the speech defects from surgeries and cognitive side effects of radiation. Other issues grow more glaring as he ages. Radiation treatment has caused the right side of Gabe’s jaw to stop growing, as his head continues to grow his face becomes more distorted. Rob and I have worked hard to instill in him the virtues of being a sweet and polite vs. cute, but that rhetoric doesn’t hold too much water when you are being teased by your peers. Gabe has a very healthy self worth and I am confident in his ability to “hold his own” but, thinking of him being teased breaks my heart all the same. Together we will face all the surgeries and teasing and I’m sure it will bring us closer as a family, but there will always be a part of me that resents the fact that this ordeal never seems to be over.
The biggest part of my heart, however, understands all too well that every single hurdle we have to overcome is a blessing. We have the luxury of complaint because we still have our child. Without the great advances in the treatment of childhood cancer, we would be silently weeping by a grave, instead of swallowing a lump of pride as he boards the school bus.
Survival rates for childhood cancer have risen sharply over the past 20 years. In the United States, more than 75 percent of children with cancer are now alive five years after diagnosis, compared with about 60 percent in the mid-1970s.
However, the unfortunate truth is that as the rates of survival increase, so do the number of children diagnosed.
Over the past 20 years, there has been an increase in the incidence of children diagnosed with all forms of invasive cancer; from 11.4 cases per 100,000 children in 1975 to 15.2 per 100,000 children in 1998.*
Because of the growing demographic of childhood cancer survivors, there have been great strides made in recognizing and treating the after effects of chemotherapy and radiation. There is an understanding now that treating children with cancer does not end with the conclusion chemotherapy. As a result, a growing number of Survivorship clinics are cropping up around the country.
There is also an increasing understanding of the social and psychological consequences of cancer treatment; young adults especially can experience feelings of isolation and depression.
Gilda’s Club of Nashville is working closely with Vanderbilt Hospital to assist young adults, who are juggling the difficulties of college life and finding employment while dealing with the myriad of health issues left over from cancer treatment.
My family is truly blessed, Gabe survived his brush with cancer and his side effects are minimal compared to the challenges that many other children face. He had the privilege of becoming one of the very first patients at the Survivorship clinic at Monroe Carell Jr Children’s Hospital at Vanderbilt. The staff there is actively tracking the long term effects of his treatment. They have also educated me to the fact that some of Gabe’s “quirks” are not “just Gabe”, they are well documented cognitive “late term effects” of radiation to the skull. Although the number childhood cancer survivors is swelling, there is still a great need for better medicines. Every child facing cancer treatment should be assured not only of survival, but also of minimal side effects from treatment.
As Gabe begins this new chapter of his life, we are mindful of the fact that his survival rests squarely on the shoulders of those children who did not survive, children whose stories are forever interwoven with ours, like the intricate pattern of a rug.
In honor of Gabe’s battle my family started a non profit dedicated to educate and assist families facing childhood cancer. During September, childhood cancer month, we ask that you take a minute to visit our website to read about ways you can reach out to help families in crisis.
http://www.gabesmyheart.com/
To join the growing advocacy movement supporting childhood cancer please visit the curesearch website
http://www.curesearch.org/support_curesearch/raise_awareness/
*Information compiled from both Cancer.gov, the Web site of the National Cancer Institute, and cancer.org, the Web site of the American Cancer Society
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