The Next Steps
We met with two doctors on Thursday afternoon.
The second doctor was the surgeon who will install a special port just under Kyler's collar bone that will allow the chemotherapy to be administered without having to place a new IV each time. They can also give medicine and take blood through this port. It will look like a lump under his skin and they will put a numbing cream on him when they have to access the port through the skin. This option allows him to swim this summer and requires less maintenence than the other type which is an external tube that needs to be cleaned daily and has increased risk of infection.
The first appointment was with another of the pediatric oncologists, a social worker, and a nurse. They wanted to meet with us because we had brought up the idea of waiting to start the radiation and chemotherapy. Our thinking was that if the spinal tap came back clean that we might wait 30 days and test again to see if anything shows up. If we could postpone the radiation and chemotherapy that would be wonderful. He could have more time to heal, get stronger, and get his immune system up to full capacity. We have made some extensive changes in our home and diet that we are thinking would be helpful in allowing his body to do what it needed to fight this on it's own with the proper nutrition as well as eliminate toxins in his system. We have removed almost all of the food in our house that is not organic and begun two types of nutritional supplements. One helps with the elimination of toxins in the body and the other helps the body get the nutritional elements it needs for a fully functioning immune system. It is our hope that this will help prepare his body for radiation and chemotherapy.
They weren't too excited our idea. Apparently the protocol based on many years of case studies gives patients the best chances if the treatments begin within 28 days of surgery. The longer we wait the more likely it is to spread to other places in his body. I know, I was thinking that since 100% of the tumor was taken out that if his spinal tap came back clean that meant it was no longer there. The spinal tap will only tell us the extent of his disease, whether or not cells have migrated to other places in his cerebral spinal fluid. They were very clear to make us understand that he is not disease free at this point. His disease is on a microscopic level right now. There are still cells remaining in the area where the tumor was. You can only cut out so much with a scalpel. They told us that on a scale of 1 to 10 (1 being cancer-free and great and 10 being widespread cancer with no hope) that Kyler was at a 5 right now. The type of cancer we are dealing with is an aggressive and fast one. This has put him in a high risk category as opposed to standard risk. Because he is high risk, he is not a good candidate for a clinical trial that is evaluating the effectiveness of lower dosage radiation on a medullablastoma. He will be receiving the standard dosage and following the protocol prescribed. They have given us a 10% to 40% chance that the treatments will work and cure him. This is measured by a patient being cancer-free after five years.
Our hope is completely in God right now. The medical community has little to offer in this way.
On Monday the 15th Kyler will spend four hours at the cancer center getting everything set up for his radiation treatments. The have to create a body form for him to lie in during the radiation treatments as well as tattoo him with some pin head sized markings so they can make sure everything is properly aligned using lasers. There will be 31 treatments happening every day except weekends. This will take about six weeks. He will have to undergo general anesthesia for the treatments since he will be incapable of remaining completely still. It's not going to be a good time for him. He already hates going to see the doctor now. It takes 'a long time' to drive there and it's 'boring'.
Tuesday the 16th we get there early in the morning for the spinal tap and surgery to intstall the port. They will both happen while he is under general anesthesia. He will be able to come home and recover the rest of the week.
The week of the 22nd everything is going to change. He begins radiation treatments in conjuction with a small chemotherapy treatment. After the six weeks of radiation that will entail full brain, full spine, and a focused boost on the tumor location, he will get a month off. The chemotherapy treatments will begin after that.
We entreat your continued prayers and support. Thank your for your perseverance.
The second doctor was the surgeon who will install a special port just under Kyler's collar bone that will allow the chemotherapy to be administered without having to place a new IV each time. They can also give medicine and take blood through this port. It will look like a lump under his skin and they will put a numbing cream on him when they have to access the port through the skin. This option allows him to swim this summer and requires less maintenence than the other type which is an external tube that needs to be cleaned daily and has increased risk of infection.
The first appointment was with another of the pediatric oncologists, a social worker, and a nurse. They wanted to meet with us because we had brought up the idea of waiting to start the radiation and chemotherapy. Our thinking was that if the spinal tap came back clean that we might wait 30 days and test again to see if anything shows up. If we could postpone the radiation and chemotherapy that would be wonderful. He could have more time to heal, get stronger, and get his immune system up to full capacity. We have made some extensive changes in our home and diet that we are thinking would be helpful in allowing his body to do what it needed to fight this on it's own with the proper nutrition as well as eliminate toxins in his system. We have removed almost all of the food in our house that is not organic and begun two types of nutritional supplements. One helps with the elimination of toxins in the body and the other helps the body get the nutritional elements it needs for a fully functioning immune system. It is our hope that this will help prepare his body for radiation and chemotherapy.
They weren't too excited our idea. Apparently the protocol based on many years of case studies gives patients the best chances if the treatments begin within 28 days of surgery. The longer we wait the more likely it is to spread to other places in his body. I know, I was thinking that since 100% of the tumor was taken out that if his spinal tap came back clean that meant it was no longer there. The spinal tap will only tell us the extent of his disease, whether or not cells have migrated to other places in his cerebral spinal fluid. They were very clear to make us understand that he is not disease free at this point. His disease is on a microscopic level right now. There are still cells remaining in the area where the tumor was. You can only cut out so much with a scalpel. They told us that on a scale of 1 to 10 (1 being cancer-free and great and 10 being widespread cancer with no hope) that Kyler was at a 5 right now. The type of cancer we are dealing with is an aggressive and fast one. This has put him in a high risk category as opposed to standard risk. Because he is high risk, he is not a good candidate for a clinical trial that is evaluating the effectiveness of lower dosage radiation on a medullablastoma. He will be receiving the standard dosage and following the protocol prescribed. They have given us a 10% to 40% chance that the treatments will work and cure him. This is measured by a patient being cancer-free after five years.
Our hope is completely in God right now. The medical community has little to offer in this way.
On Monday the 15th Kyler will spend four hours at the cancer center getting everything set up for his radiation treatments. The have to create a body form for him to lie in during the radiation treatments as well as tattoo him with some pin head sized markings so they can make sure everything is properly aligned using lasers. There will be 31 treatments happening every day except weekends. This will take about six weeks. He will have to undergo general anesthesia for the treatments since he will be incapable of remaining completely still. It's not going to be a good time for him. He already hates going to see the doctor now. It takes 'a long time' to drive there and it's 'boring'.
Tuesday the 16th we get there early in the morning for the spinal tap and surgery to intstall the port. They will both happen while he is under general anesthesia. He will be able to come home and recover the rest of the week.
The week of the 22nd everything is going to change. He begins radiation treatments in conjuction with a small chemotherapy treatment. After the six weeks of radiation that will entail full brain, full spine, and a focused boost on the tumor location, he will get a month off. The chemotherapy treatments will begin after that.
We entreat your continued prayers and support. Thank your for your perseverance.
| 1:40 PM
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