Well, neither Dr. Hansen nor the nurse in with us was able to make it to the conference, so we didn't really get any information about it. But, Dr. Hansen really stressed that the main way we know how Kayla is doing is by looking at her and seeing how she is doing. Which, she is doing fabulous. She still has tons of energy, she still has her hair, she has almost no visible side affects from the chemo and she is adjusting really well to going to the clinic each week, getting accessed and adjusting to everything.
I asked Dr. Hansen what things would be like for Kayla after her 60 weeks of chemo were done. He said that would still be having MRI's every three months and then every 6 months and eventually every year, but she will probably always be having one every year for years.
He also said that the type of tumor that she has has a high percentage of relapse. That is why she will need the MRI's so frequently because there is a good chance that sometime down the road the tumor will start to grow again. I asked him what we would do then and he said that Kayla would have to do another round of chemo. If she is older, they would possibly do radiation, too, but he likes to avoid that if possible because of fertility issues.
Dr. Hansen also said that even though Kayla's results for neurofibromatosis (NF) came back negative, he is going to just assume that she has it. It won't hurt anything treatment wise to do that. We will just have to wait until she gets older to see if she develops more of the symptoms and then tests positive for the condition. He told us that once she starts school, they have lots of resources for cases like hers where she might need some extra attention. They will make sure that she has everything that she needs to be successful in school (people with NF typically have some learning disorders). It is very encouraging that her eyesight is so good. She can function normally with just her vision in her right eye.
We also addressed the MRI that Kayla had recently. Dr. Hansen said that you don't typically see results like he saw in Kayla's where there is a visible decrease in size. This seems very good. But, also, he said he's not sure what to think yet because the chemo is killing cells that multiply rapidly. Kayla's tumor is typically a slow growing tumor, but if the chemo is doing a good job on decreasing the size of it, it might not be as slow growing as usual ones are. The cells of it might be dividing more rapidly and that is why the chemo is working so well. We just don't know much and have to just be grateful for how well that she is doing.
So, overall, I guess it wasn't a very positive conversation when we are talking about how she is going to have these issues for the rest of her life and how she could very possibly being doing chemotherapy again or even multiple times. But, I didn't feel discouraged. I know that I have been very blessed with the strength to handle all of this and to just take it one step at a time.
I asked Dr. Hansen what things would be like for Kayla after her 60 weeks of chemo were done. He said that would still be having MRI's every three months and then every 6 months and eventually every year, but she will probably always be having one every year for years.
He also said that the type of tumor that she has has a high percentage of relapse. That is why she will need the MRI's so frequently because there is a good chance that sometime down the road the tumor will start to grow again. I asked him what we would do then and he said that Kayla would have to do another round of chemo. If she is older, they would possibly do radiation, too, but he likes to avoid that if possible because of fertility issues.
Dr. Hansen also said that even though Kayla's results for neurofibromatosis (NF) came back negative, he is going to just assume that she has it. It won't hurt anything treatment wise to do that. We will just have to wait until she gets older to see if she develops more of the symptoms and then tests positive for the condition. He told us that once she starts school, they have lots of resources for cases like hers where she might need some extra attention. They will make sure that she has everything that she needs to be successful in school (people with NF typically have some learning disorders). It is very encouraging that her eyesight is so good. She can function normally with just her vision in her right eye.
We also addressed the MRI that Kayla had recently. Dr. Hansen said that you don't typically see results like he saw in Kayla's where there is a visible decrease in size. This seems very good. But, also, he said he's not sure what to think yet because the chemo is killing cells that multiply rapidly. Kayla's tumor is typically a slow growing tumor, but if the chemo is doing a good job on decreasing the size of it, it might not be as slow growing as usual ones are. The cells of it might be dividing more rapidly and that is why the chemo is working so well. We just don't know much and have to just be grateful for how well that she is doing.
So, overall, I guess it wasn't a very positive conversation when we are talking about how she is going to have these issues for the rest of her life and how she could very possibly being doing chemotherapy again or even multiple times. But, I didn't feel discouraged. I know that I have been very blessed with the strength to handle all of this and to just take it one step at a time.
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