We had our meeting with the doctors here in Denver a week and a half ago Wednesday. They confirmed that Kaitlyn is 100% neurologically sound - this was accomplished by putting her through the routine exams where they test her reflexes, her balance, etc. We still have no account for what is causing her chronic stomachache, headache, nausea and not sleeping through the night. Officially, Kaitlyn remains asymptomatic and as of her last scan, stable. Dr. Rush, her neuro-oncologist confirmed the diagnosis of brain tumor and told us the protocol is to watch, wait and re-scan in 3 months (in November), unless something happens in the interim.
What we learned from this meeting: 1. This could all go away and the tumor will stop growing in her early adulthood; 2. She has a 50-50 chance of needing chemotherapy, depending on whether the tumor will continue to grow or not; 3. They absolutely will NOT do a biopsy on an asymptomatic child (which is a good thing); and 4. This tumor is surgically unresectable (irremovable). Now, different doctors have different opinions, but basically they all agree that watch, wait and re-scan is the best option right now.
The question for us is, do we re-scan her here in Denver or go to a different hospital, such as Boston Children's, Mayo, or Johns Hopkins. This is something we both need to think and pray about over the next 3 months, as Steve and I are not yet on the same page when it comes to this. We are in agreement, however, that whatever we decide on, it will be a unanimous decision between me, Steve and the Lord. Until that confirmation comes, we pray, we ask, we fast and we seek. I have faith that the Lord will guide our next steps, even if He doesn't show us the entire road ahead.
This is what we know.
Sunday, September 16, 2012
Saturday, September 1, 2012
Roller-Coaster Rides
This past week or so has been interesting. After receiving the news from Dana-Farber in Boston, I kind of went into my emotional tailspin mode again, as I did after the initial diagnosis. You want so desperately to know what is wrong with your child and how you can fix it and then when you find out what it is and that fixing it may not be possible, you kind of fall apart. That is how I have felt this week.
Later, Johns Hopkins called back and confirmed low-grade glioma. The demyelinating specialist here in Denver also called and told me that she felt strongly that the lesion is not demyelinating, so she will be taking a back seat for now. We meet with the doctors here in Denver next Thursday, so that should be an interesting meeting. Kaitlyn still complains of little aches, pains, numbness, headaches, dizziness, etc., but these are all minor and so considered "non-specific" symptoms and she is thus "asymptomatic" at this point.
As you can imagine, I've spent the last week and a half on the Internet searching, researching, and basically finding out everything I can (again) about gliomas/brain tumors. I have also joined a support group for kids with low-grade glioma. It has been eye-opening and humbling, to say the least. I have also spent time looking at different hospitals and doctors to make sure we're getting the best care for Kaitlyn. Lots of advice has come my way from other parents of glioma kids and it has all been very helpful, but, by the same token, it has made making the decision about what to do next a lot harder.
This was my state of mind on Friday. My mother-in-law and I talked that morning about the Mayo Clinic again, because in the back of my mind, they were the ones who diagnosed this as a glioma right away. Granted, it was just a radiologist, not a whole team of doctors looking at it, as opposed to the other hospitals. Also, we've been told that Mayo isn't really the best place for kids with brain tumors. But something kept making me want to turn over that last stone. So I found out the e-mail address of Dr. Nicholas Wetjen, the chief pediatric neurosurgeon there at Mayo and wrote him a note explaining all the background and the fact that Mayo already has a copy of Kaitlyn's first scans. Not much more than 5 minutes after I pressed send, the phone rang (I'm not making this stuff up). It was Dr. Wetjen and after introducing himself, his first words were "I see nothing here that's particularly worrisome." He went on to explain that the lesion is definitely not demyelinating and that it has all the characteristics of a slow-growing glioma. He then said it would most likely need a biopsy to confirm and decide on treatment. I told him that all the doctors I had talked to feel that it's too high-risk and he reassured me that since the tumor is partially in the cerebellum, that surgery would actually be low-risk, with only a 1-2 percent of an internal bleed. I told him that Boston had recommended going into chemo treatment without a biopsy. He said that happens sometimes, especially in cases where it's imperative to act quickly, but that there really is no urgency in this case and the cure would be more toxic than the tumor at this point. I asked him if it would be worth our while to bring her up to Mayo for a comprehensive evaluation and he responded that it might be a good thing to bring her the next time she is due for a re-scan, which would be in about 3 months. He noted that certain modalities weren't used in the scans here in Denver, and he said that Mayo could definitely add some more advanced technology in terms of diagnosis and treatment. Then he briefly walked me through what would happen and who she would see if she came to Minnesota. He told me to e-mail him if we decided to come up and he would arrange it.
After that phone call, I felt at peace. It was like someone had turned on the light in a dark room. I wasn't confused or anxious anymore and felt that I had finally received some direction. Fast-forward to talking with my mother-in-law this morning. After I told her all this, she got a little emotional and explained that on her way to her church volunteer service on Friday, she kept praying that Steve and I would get some clear guidance or direction as to what to do next. She kept thinking and praying about it while she was in church that day and while she offered up Kaitlyn's name for extra prayers from her fellow volunteers and churchgoers. I feel that Dr. Wetjen's call back was a direct answer to those prayers. It was amazing to hear her side of what went on yesterday and I continue to feel that, despite my moments of doubt and despair, Heavenly Father is leading and guiding us one step at a time through this dark new world of pediatric brain cancer.
So, there you have it. I'll write more once we meet with the doctors here in Denver on Thursday.
Later, Johns Hopkins called back and confirmed low-grade glioma. The demyelinating specialist here in Denver also called and told me that she felt strongly that the lesion is not demyelinating, so she will be taking a back seat for now. We meet with the doctors here in Denver next Thursday, so that should be an interesting meeting. Kaitlyn still complains of little aches, pains, numbness, headaches, dizziness, etc., but these are all minor and so considered "non-specific" symptoms and she is thus "asymptomatic" at this point.
As you can imagine, I've spent the last week and a half on the Internet searching, researching, and basically finding out everything I can (again) about gliomas/brain tumors. I have also joined a support group for kids with low-grade glioma. It has been eye-opening and humbling, to say the least. I have also spent time looking at different hospitals and doctors to make sure we're getting the best care for Kaitlyn. Lots of advice has come my way from other parents of glioma kids and it has all been very helpful, but, by the same token, it has made making the decision about what to do next a lot harder.
This was my state of mind on Friday. My mother-in-law and I talked that morning about the Mayo Clinic again, because in the back of my mind, they were the ones who diagnosed this as a glioma right away. Granted, it was just a radiologist, not a whole team of doctors looking at it, as opposed to the other hospitals. Also, we've been told that Mayo isn't really the best place for kids with brain tumors. But something kept making me want to turn over that last stone. So I found out the e-mail address of Dr. Nicholas Wetjen, the chief pediatric neurosurgeon there at Mayo and wrote him a note explaining all the background and the fact that Mayo already has a copy of Kaitlyn's first scans. Not much more than 5 minutes after I pressed send, the phone rang (I'm not making this stuff up). It was Dr. Wetjen and after introducing himself, his first words were "I see nothing here that's particularly worrisome." He went on to explain that the lesion is definitely not demyelinating and that it has all the characteristics of a slow-growing glioma. He then said it would most likely need a biopsy to confirm and decide on treatment. I told him that all the doctors I had talked to feel that it's too high-risk and he reassured me that since the tumor is partially in the cerebellum, that surgery would actually be low-risk, with only a 1-2 percent of an internal bleed. I told him that Boston had recommended going into chemo treatment without a biopsy. He said that happens sometimes, especially in cases where it's imperative to act quickly, but that there really is no urgency in this case and the cure would be more toxic than the tumor at this point. I asked him if it would be worth our while to bring her up to Mayo for a comprehensive evaluation and he responded that it might be a good thing to bring her the next time she is due for a re-scan, which would be in about 3 months. He noted that certain modalities weren't used in the scans here in Denver, and he said that Mayo could definitely add some more advanced technology in terms of diagnosis and treatment. Then he briefly walked me through what would happen and who she would see if she came to Minnesota. He told me to e-mail him if we decided to come up and he would arrange it.
After that phone call, I felt at peace. It was like someone had turned on the light in a dark room. I wasn't confused or anxious anymore and felt that I had finally received some direction. Fast-forward to talking with my mother-in-law this morning. After I told her all this, she got a little emotional and explained that on her way to her church volunteer service on Friday, she kept praying that Steve and I would get some clear guidance or direction as to what to do next. She kept thinking and praying about it while she was in church that day and while she offered up Kaitlyn's name for extra prayers from her fellow volunteers and churchgoers. I feel that Dr. Wetjen's call back was a direct answer to those prayers. It was amazing to hear her side of what went on yesterday and I continue to feel that, despite my moments of doubt and despair, Heavenly Father is leading and guiding us one step at a time through this dark new world of pediatric brain cancer.
So, there you have it. I'll write more once we meet with the doctors here in Denver on Thursday.
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