Blogging for Children with Disabilities
Juniperus' post triggered this one of mine. -
I have posted about the light of my life, my nephew Stevie Ray here many times. It is not immediately apparent that he has a disabilities. The only outward sign that something might be wrong is a 1 inch round puckered scar on his chest. This is where life saving but equally poisonous medicines were injected into his body for two and half years. At the age of two years and eleven months he was diagnosed with High Risk Acute Lymphoblastic Leukemia. The reason he was placed in the high risk category were the cancer cells found in his cerebral-spinal fluid. This meant that he frequent injections of three different powerful drugs poisons into his spine during the 30 months of treatment. The protocol he was placed in called for cranial radiation as well, more about that later.
The commonly held understanding is that leukemia is a highly curable -'good' cancer. The truth is quite different. At diagnosis we were informed that he had a 43% chance of survival. Survival. Not event free- i.e. he might have further serious health issues - the chemotherapy is poison. So it damages the brain, liver, kidneys, heart, and hinders growth. Oh, and by the way it might cause future cancers.
There are many precautions taken during chemotherapy to reduce the short and long term damage caused by the treatments. However there is little that can be done to protect the brain. Under the age of five, many critical areas of the brain are not protected by white matter. Some of those were damaged. Stevie Ray has processing disabilities. He has had several neuropsych examinations to monitor these effects. The results are used to develop strategies for him to cope.
A few months after his diagnosis we joined an internet support group ACOR, I strongly recommend anyone dealing with cancer how much help this site can be. It is moderated by individuals who are actively working with oncology professionals. It was there that we learned about the long-term effects of chemotherapy and radiation. This triggered much research by my sister and I as we sought a path to reduce the long-term damage. We were very fortunate in Stevie Ray's Oncologist, Dr. Manuel Carcao. He was open to discussion of Stevie Ray's treatment. At diagnosis we were (my sister asked that I support her) asked for permission to enrol Stevie Ray in a study- this is the way most cancers are treated- by using a set protocol, better outcomes are achieved, and much is learned for the future. Medical science cannot go forward without studies, many are concerned that once in a study you can't change. NOT TRUE. We were told at the outset that if his treatment needed to be changed due to adverse effects or changes in his clinical condition, that there would be no hesitation in doing so.
So when my sister approached Dr. Carcao with questions and information about alternatives to cranial radiation, he was open to discussion and sought out second opinions from oncologists in other countries, including Dr. Pui at St. Judes. The alternate treatment program was then taken to a board of oncologists at the Hospital for Sick Children and the Principal Investigators of the research study. Instead of the cranial radiation, Triple Intrathecal (into the spine) chemotherapy would be given every 6 weeks. There were significant risks in taking this route. The most critical was Stevie Ray would relapse. However, the evidence showed that cranial radiation was not a guarantee that he wouldn't, but it was a guarantee that he would have significant loss of IQ.
There were things that Laura could do that might help. We were told that any learning he did at during treatment would be kept, so despite his age and the rigors of treatment, she developed a plan of learning that was instituted at home; a teacher came weekly for a few hours once he was school age. He was kept on home schooling to protect him from infection and to make sure that his learning was not impaired by the frailties of the public school system.
Stevie Ray is now 10 years old. He is cured of cancer. So far- crosses fingers, the adverse effects of his treatment are his shorter stature, fine motor difficulties- i.e. difficulty writing /printing, attention difficulties and visual processing.
When he was seven, he had his most recent battery of neuropsych testing. Here are some of the results. The differences are huge. (all are percentile rank i.e. percentage of individuals in the sample whose performance matched or exceeded- scores between 25-75 are broadly average)
Ability to reproduce, from a model, complex geometric designs using coloured blocks = 91st
Picture concepts- ability to select pictures from 2-3 groups that have a common characteristic= 37th
Coding (ability to quickly transcribe symbols paired with numbers using pencil and paper) = 9
Information - knowledge of general background information = 95th
Working Memory Index - best estimate of ability to attend to, recall and manipulate orally presented information = 94th
Letter-Number Sequences- ability to manipulate orally presented numbers and letters and recall numbers in ascending order and letters in alphabetical order = 95th
Processing Speed Index- best estimate of ability to quickly scan non-meaningful visual input and respond using pencil and paper = 9th
Thanks for reading, I wanted to share this experience so that others can learn. Don't feel sorry for Stevie Ray, he is a bright, active and happy boy. He does have experiences that have made him more mature than his peers- not many have lost a friend due to the same illness he suffered. Thus he is aware of mortality, something that no five year old should learn (Marcus died when Stevie Ray was 5) but it has made him a very caring and loving child and he will be a wonderful man. He is doing well at school, he does hate to write- it would be better if he had a laptop, but that will come. Hockey is his passion, he plays goalie, I am told he does this very well and has been scouted for higher- more skilled teams.
I have posted about the light of my life, my nephew Stevie Ray here many times. It is not immediately apparent that he has a disabilities. The only outward sign that something might be wrong is a 1 inch round puckered scar on his chest. This is where life saving but equally poisonous medicines were injected into his body for two and half years. At the age of two years and eleven months he was diagnosed with High Risk Acute Lymphoblastic Leukemia. The reason he was placed in the high risk category were the cancer cells found in his cerebral-spinal fluid. This meant that he frequent injections of three different powerful drugs poisons into his spine during the 30 months of treatment. The protocol he was placed in called for cranial radiation as well, more about that later.
The commonly held understanding is that leukemia is a highly curable -'good' cancer. The truth is quite different. At diagnosis we were informed that he had a 43% chance of survival. Survival. Not event free- i.e. he might have further serious health issues - the chemotherapy is poison. So it damages the brain, liver, kidneys, heart, and hinders growth. Oh, and by the way it might cause future cancers.
There are many precautions taken during chemotherapy to reduce the short and long term damage caused by the treatments. However there is little that can be done to protect the brain. Under the age of five, many critical areas of the brain are not protected by white matter. Some of those were damaged. Stevie Ray has processing disabilities. He has had several neuropsych examinations to monitor these effects. The results are used to develop strategies for him to cope.
A few months after his diagnosis we joined an internet support group ACOR, I strongly recommend anyone dealing with cancer how much help this site can be. It is moderated by individuals who are actively working with oncology professionals. It was there that we learned about the long-term effects of chemotherapy and radiation. This triggered much research by my sister and I as we sought a path to reduce the long-term damage. We were very fortunate in Stevie Ray's Oncologist, Dr. Manuel Carcao. He was open to discussion of Stevie Ray's treatment. At diagnosis we were (my sister asked that I support her) asked for permission to enrol Stevie Ray in a study- this is the way most cancers are treated- by using a set protocol, better outcomes are achieved, and much is learned for the future. Medical science cannot go forward without studies, many are concerned that once in a study you can't change. NOT TRUE. We were told at the outset that if his treatment needed to be changed due to adverse effects or changes in his clinical condition, that there would be no hesitation in doing so.
So when my sister approached Dr. Carcao with questions and information about alternatives to cranial radiation, he was open to discussion and sought out second opinions from oncologists in other countries, including Dr. Pui at St. Judes. The alternate treatment program was then taken to a board of oncologists at the Hospital for Sick Children and the Principal Investigators of the research study. Instead of the cranial radiation, Triple Intrathecal (into the spine) chemotherapy would be given every 6 weeks. There were significant risks in taking this route. The most critical was Stevie Ray would relapse. However, the evidence showed that cranial radiation was not a guarantee that he wouldn't, but it was a guarantee that he would have significant loss of IQ.
There were things that Laura could do that might help. We were told that any learning he did at during treatment would be kept, so despite his age and the rigors of treatment, she developed a plan of learning that was instituted at home; a teacher came weekly for a few hours once he was school age. He was kept on home schooling to protect him from infection and to make sure that his learning was not impaired by the frailties of the public school system.
Stevie Ray is now 10 years old. He is cured of cancer. So far- crosses fingers, the adverse effects of his treatment are his shorter stature, fine motor difficulties- i.e. difficulty writing /printing, attention difficulties and visual processing.
When he was seven, he had his most recent battery of neuropsych testing. Here are some of the results. The differences are huge. (all are percentile rank i.e. percentage of individuals in the sample whose performance matched or exceeded- scores between 25-75 are broadly average)
Ability to reproduce, from a model, complex geometric designs using coloured blocks = 91st
Picture concepts- ability to select pictures from 2-3 groups that have a common characteristic= 37th
Coding (ability to quickly transcribe symbols paired with numbers using pencil and paper) = 9
Information - knowledge of general background information = 95th
Working Memory Index - best estimate of ability to attend to, recall and manipulate orally presented information = 94th
Letter-Number Sequences- ability to manipulate orally presented numbers and letters and recall numbers in ascending order and letters in alphabetical order = 95th
Processing Speed Index- best estimate of ability to quickly scan non-meaningful visual input and respond using pencil and paper = 9th
Thanks for reading, I wanted to share this experience so that others can learn. Don't feel sorry for Stevie Ray, he is a bright, active and happy boy. He does have experiences that have made him more mature than his peers- not many have lost a friend due to the same illness he suffered. Thus he is aware of mortality, something that no five year old should learn (Marcus died when Stevie Ray was 5) but it has made him a very caring and loving child and he will be a wonderful man. He is doing well at school, he does hate to write- it would be better if he had a laptop, but that will come. Hockey is his passion, he plays goalie, I am told he does this very well and has been scouted for higher- more skilled teams.