Marching up a big hill
On Tuesday our radiation oncologist informed me that he had gotten a response from the head of pediatric oncology at St. Jude’s in Memphis and the chairman of the committee that designs the clinical trials for pediatric cancer patients. They felt that the radiation dose Kyler is currently receiving is too low. They are preparing to initiate a clinical trial in which patients with Kyler’s type of cancer and location of tumor would receive a higher radiation dose than Kyler is currently receiving. The following numbers may not mean a great deal but it gives you a reference for where things are changing.
Currently, Kyler is receiving a radiation dose of 2340 centigrade. In the new clinical trial that will be coming out patients would receive a dose of 3600 centigrade. Both of the doctors who have been in contact with our pediatric oncologist felt that, for a five year old patient, 3600 would be too high. They felt that a dose of 3060 would be appropriate.
This would increase neurocognitive damage resulting in greater difficulty in processing information, short-term memory loss, increased frustration in the classroom, and other learning disabilities. This would also have a greater impact on his teeth, which are in the radiation field, as well as other future growth hormone issues.
Two things have given us hope after receiving this discouraging news. 1) You are all praying fervently for Kyler and our family. 2) Kyler is taking many dietary supplements that will hopefully reduce the amount of damage done to good cells.
When we brought up the possibility of looking into getting radiation treatment at UC Davis while we were under care in the Sutter Health care system you would have thought we had suggested that we go to Venus for treatment. So why were we even asking about UC Davis? We contacted them to find out when they treat their pediatric cancer patients receiving radiation and discovered that it is early in the morning (around 7:00 AM or so). What a great idea!! That way even if they have to be receiving general anesthesia the eight hours they can’t eat is while they are asleep.
This seemed to shock them that we would even think of transferring Kyler during treatment. Well, we don’t know any better. That’s why we ask questions.
Apparently, moving a patient, even within the same health care system, to another radiation facility is a risky move. The analogy they used was that of making a cake. “You wouldn’t start making a cake and take it out of the oven half way through and run across the street to put it into a different oven, even if it was the same model of oven. It just wouldn’t turn out right. Each radiation machine is unique and has it’s own peculiarities. You can’t just throw him on a different machine. He would have to go through the entire set-up process again as well as interrupt treatment. It’s not a good idea.”
We repeatedly assured them that our only frustration is with the schedule of treatment and not the doctors themselves. The schedule is does not give pediatric patients the most opportunity to thrive during an already difficult treatment process.
The news of the possibility of our ‘defection’ spread quickly. By the time we arrived at the radiation oncology center only an hour later, they already knew what we were thinking and were making attempts to try and smooth things out.
Don’t get me wrong. Our doctors are great. They perform miracles every day. They have taken good care of us. However, they are forced to work within a structure that sometimes does not have the patient at the center of the decision making process. It would appear that a change that would benefit patients must also benefit the bottom line, or at the very least not hurt it in any way, in order to be instituted. If it is not cost effective or expedient it will likely fall to the wayside.
On Wednesday Sandie was praying as she was driving to the radiation oncology center that she would receive some sort of encouragement from the doctor. God answered her prayer in the form of receiving information on who to contact at the hospital to apply pressure in order to try and get things changed. I also spoke with two people that afternoon that had ideas on how to go about stirring things up in the right way to get a change in the system. We are hopeful that our efforts will be successful in instituting a policy that will be of greater benefit to the pediatric cancer patient - even if it’s not for our son, but for another’s child.
Kyler’s appetite is not great. After only a few bites he is full. It’s no wonder since his stomach has shrunk from not eating all day. It’s funny. He loves to make things in the kitchen even though he knows he can’t eat them. “Oooo, Kendrick would like this one”, he says admiring the picture in the kids cookbook. He is then content to mix and pour in ingredients to make something he can’t even enjoy.
Over the last few weeks his blood counts have started to dip down. If the trend continues he may need a blood transfusion within a week or so.
Thanks for continuing to pray for us.
Currently, Kyler is receiving a radiation dose of 2340 centigrade. In the new clinical trial that will be coming out patients would receive a dose of 3600 centigrade. Both of the doctors who have been in contact with our pediatric oncologist felt that, for a five year old patient, 3600 would be too high. They felt that a dose of 3060 would be appropriate.
This would increase neurocognitive damage resulting in greater difficulty in processing information, short-term memory loss, increased frustration in the classroom, and other learning disabilities. This would also have a greater impact on his teeth, which are in the radiation field, as well as other future growth hormone issues.
Two things have given us hope after receiving this discouraging news. 1) You are all praying fervently for Kyler and our family. 2) Kyler is taking many dietary supplements that will hopefully reduce the amount of damage done to good cells.
When we brought up the possibility of looking into getting radiation treatment at UC Davis while we were under care in the Sutter Health care system you would have thought we had suggested that we go to Venus for treatment. So why were we even asking about UC Davis? We contacted them to find out when they treat their pediatric cancer patients receiving radiation and discovered that it is early in the morning (around 7:00 AM or so). What a great idea!! That way even if they have to be receiving general anesthesia the eight hours they can’t eat is while they are asleep.
This seemed to shock them that we would even think of transferring Kyler during treatment. Well, we don’t know any better. That’s why we ask questions.
Apparently, moving a patient, even within the same health care system, to another radiation facility is a risky move. The analogy they used was that of making a cake. “You wouldn’t start making a cake and take it out of the oven half way through and run across the street to put it into a different oven, even if it was the same model of oven. It just wouldn’t turn out right. Each radiation machine is unique and has it’s own peculiarities. You can’t just throw him on a different machine. He would have to go through the entire set-up process again as well as interrupt treatment. It’s not a good idea.”
We repeatedly assured them that our only frustration is with the schedule of treatment and not the doctors themselves. The schedule is does not give pediatric patients the most opportunity to thrive during an already difficult treatment process.
The news of the possibility of our ‘defection’ spread quickly. By the time we arrived at the radiation oncology center only an hour later, they already knew what we were thinking and were making attempts to try and smooth things out.
Don’t get me wrong. Our doctors are great. They perform miracles every day. They have taken good care of us. However, they are forced to work within a structure that sometimes does not have the patient at the center of the decision making process. It would appear that a change that would benefit patients must also benefit the bottom line, or at the very least not hurt it in any way, in order to be instituted. If it is not cost effective or expedient it will likely fall to the wayside.
On Wednesday Sandie was praying as she was driving to the radiation oncology center that she would receive some sort of encouragement from the doctor. God answered her prayer in the form of receiving information on who to contact at the hospital to apply pressure in order to try and get things changed. I also spoke with two people that afternoon that had ideas on how to go about stirring things up in the right way to get a change in the system. We are hopeful that our efforts will be successful in instituting a policy that will be of greater benefit to the pediatric cancer patient - even if it’s not for our son, but for another’s child.
Kyler’s appetite is not great. After only a few bites he is full. It’s no wonder since his stomach has shrunk from not eating all day. It’s funny. He loves to make things in the kitchen even though he knows he can’t eat them. “Oooo, Kendrick would like this one”, he says admiring the picture in the kids cookbook. He is then content to mix and pour in ingredients to make something he can’t even enjoy.
Over the last few weeks his blood counts have started to dip down. If the trend continues he may need a blood transfusion within a week or so.
Thanks for continuing to pray for us.
| 9:36 AM
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