Post by kimsmom on Feb 18, 2008 14:06:28 GMT -6
Hello all.
I originally posted to the old forum in December and had difficulty with that board at the time as well as getting started on this one but I think it's fine now.
The old post is under the user name dthul w/pretty much the same subject heading if you want to read it.
Basically, my three year old daughter, Kim, was diagnosed (in Jan. 2007) with a grade 1 pilocytic astrocytoma extending from T8 to L3. The tumor had also perforated through the conus medullaris and moved into the lower region of the cauda equina becoming intertwined with nerves. Kim also had a large cyst extending from C7 to T5.
Based on what our neurosurgeon saw on the MRI he planned for a resection but when they opened Kim up he found that the tumor was much more infiltrative then what the MRI showed. He took pieces of the tumor for a biopsy but did not attempt to resect the tumor, feeling that he would not be able to do it without leaving Kim worse off then she was.
We decided that Kim would begin a chemotherapy regimen of carboplatin, vincristine, and temodar with the hopes of getting rid of the tumor or shrinking it for another possible surgery. We consulted the head of pediatric neurosurgery at Chicago's Children's Memorial Hospital and he too was on board with the decision.
Kim began chemo on Feb. 9 of 2007. At first there were no changes at all which was a little disheartening. Kim had her latest MRI on Dec. 12 of 2007. This time we had good news! The large cyst was gone with the exception of two very small spots. Kim's tumor was also responding. There was a decrease in the size of the tumor as well as in the extent of enhancement.
Since both the MRI and clinical results showed improvement, we decided to continue with the last two rounds of chemotherapy with the hopes that we will see continued improvement. Kim is in the middle of this round of chemo and is doing well. After these two rounds Kim will have another MRI and then we will see where we stand with further treatment needs (possible surgery, other chemo options, etc...)
I hope and pray every night that Kim's tumor will continue to respond to the chemotherapy. The thought of another surgery is very scary to me. The first one was very tough on her. She's such a joy and a fighter. I try very hard to stay positive but sometimes sadness and guilt overtake me (often at night when I am trying to sleep). One positive thing that has resulted from Kim's tumor for me is a closer relationship with God if you can believe it. I'm finding comfort in prayer and from those around me who also pray for Kim.
I was excited to see that the SCTA conference will be in Itasca this summer as I live about 30 minutes away and am interested in attending.
If there are parents who would like to communicate with me either through email or through the discussion board I'd be happy to hear from you. I hope all of your children are doing well. I'll be checking back more often now that I can access the board from home.
Sincerely,
Denise
Kim's mom
I originally posted to the old forum in December and had difficulty with that board at the time as well as getting started on this one but I think it's fine now.
The old post is under the user name dthul w/pretty much the same subject heading if you want to read it.
Basically, my three year old daughter, Kim, was diagnosed (in Jan. 2007) with a grade 1 pilocytic astrocytoma extending from T8 to L3. The tumor had also perforated through the conus medullaris and moved into the lower region of the cauda equina becoming intertwined with nerves. Kim also had a large cyst extending from C7 to T5.
Based on what our neurosurgeon saw on the MRI he planned for a resection but when they opened Kim up he found that the tumor was much more infiltrative then what the MRI showed. He took pieces of the tumor for a biopsy but did not attempt to resect the tumor, feeling that he would not be able to do it without leaving Kim worse off then she was.
We decided that Kim would begin a chemotherapy regimen of carboplatin, vincristine, and temodar with the hopes of getting rid of the tumor or shrinking it for another possible surgery. We consulted the head of pediatric neurosurgery at Chicago's Children's Memorial Hospital and he too was on board with the decision.
Kim began chemo on Feb. 9 of 2007. At first there were no changes at all which was a little disheartening. Kim had her latest MRI on Dec. 12 of 2007. This time we had good news! The large cyst was gone with the exception of two very small spots. Kim's tumor was also responding. There was a decrease in the size of the tumor as well as in the extent of enhancement.
Since both the MRI and clinical results showed improvement, we decided to continue with the last two rounds of chemotherapy with the hopes that we will see continued improvement. Kim is in the middle of this round of chemo and is doing well. After these two rounds Kim will have another MRI and then we will see where we stand with further treatment needs (possible surgery, other chemo options, etc...)
I hope and pray every night that Kim's tumor will continue to respond to the chemotherapy. The thought of another surgery is very scary to me. The first one was very tough on her. She's such a joy and a fighter. I try very hard to stay positive but sometimes sadness and guilt overtake me (often at night when I am trying to sleep). One positive thing that has resulted from Kim's tumor for me is a closer relationship with God if you can believe it. I'm finding comfort in prayer and from those around me who also pray for Kim.
I was excited to see that the SCTA conference will be in Itasca this summer as I live about 30 minutes away and am interested in attending.
If there are parents who would like to communicate with me either through email or through the discussion board I'd be happy to hear from you. I hope all of your children are doing well. I'll be checking back more often now that I can access the board from home.
Sincerely,
Denise
Kim's mom
