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.
Thursday, August 23, 2012
One Down, Three to Go
One of the doctors from the Dana-Farber Cancer Institute of Boston Children's Hospital called me today. They had just gotten done discussing Kaitlyn's new scans and felt that the cut/angulation of the images was a little off from the one scan to the other, and basically, that meant they saw a little growth in the tumor. Nothing monumental, but a little different than initial, informal diagnosis here in Denver (no growth/change). Their diagnosis is that this lesion is a low-grade (non-aggressive) glioma, not a demyelinating lesion. Thus, their recommended treatment plan would be to start chemo probably within the next three months (if Denver still wanted to wait 3 months and re-scan, that would be reasonable, the doctor said). He told me these types of tumors are not fast-growing, but they tend to be chronic in nature. In essence, within months or a few years after chemotherapy, they generally grow back. But, the good news is that, in most cases, when these kids hit their 20s, the tumor stops growing. So the plan, then, is to stop or reverse the growth in these kinds of tumors with the least toxic types of therapy available until they get into their 20s and the tumor does not grow back.
This is only the first of the official opinions and second opinions to come back. Johns Hopkins, Mass General and the Denver team have yet to offer their feedback. Stay tuned. *sigh*
This is only the first of the official opinions and second opinions to come back. Johns Hopkins, Mass General and the Denver team have yet to offer their feedback. Stay tuned. *sigh*
Wednesday, August 22, 2012
No News Is Somewhat Good News
August 10 came and went and the results of Kaitlyn's latest MRI scans are, as yet, inconclusive. The good news is that whatever this lesion is, it is NOT aggressive and growing. We are very thankful for that. In the meantime, we are waiting for all the doctors, radiologists, neurosurgeons, neurologists and neuro-oncologists to weigh in on what to do next. Some docs have mentioned going into a continued surveillance mode. I'm not quite sure how I feel about that. We should have more opinions and strategies after next Tuesday, Aug. 28th, so I'm hoping to have something good to report by then. In the meantime, she has been healthy and happy. She seems to be falling more, e.g. off her bike, running and tripping, etc., but I can't tell you if that is just being a kid or something else. Neither can the doctors. It's frustrating, but we'll figure this thing out.
On a slightly different note, you'll notice that I have a link to my novel, Silent No More, on the right side here. My mom is trying to sell her house and it needs a lot of work. We're also trying to get her situated financially, since she has been living hand-to-mouth since my father died. I've been wracking my brain as to what I can do to be more of assistance. We have been hit pretty hard with medical costs and trying to save as much as possible in the event that the economy continues to slide.
It occurred to me this morning that I can raise money for my mom by donating all the proceeds of my e-book sales to meeting her needs. So I'm urging you all, my friends, that if you feel like you need a good book to read, then please click on the link and purchase my novel. If you love it, lend your review and pass the news on to your friends. If you don't like it, just toss it in the digital trash heap (I won't be offended in the least). In the meantime, all the money that comes from the sale of these e-books (minus taxes and a 10 percent donation to church) will be funneled back to helping my mom. Thanks in advance for all your support!
Seems sort of fitting, don't you think? The woman who first inspired my love of reading will be the beneficiary of my first novel.
On a slightly different note, you'll notice that I have a link to my novel, Silent No More, on the right side here. My mom is trying to sell her house and it needs a lot of work. We're also trying to get her situated financially, since she has been living hand-to-mouth since my father died. I've been wracking my brain as to what I can do to be more of assistance. We have been hit pretty hard with medical costs and trying to save as much as possible in the event that the economy continues to slide.
It occurred to me this morning that I can raise money for my mom by donating all the proceeds of my e-book sales to meeting her needs. So I'm urging you all, my friends, that if you feel like you need a good book to read, then please click on the link and purchase my novel. If you love it, lend your review and pass the news on to your friends. If you don't like it, just toss it in the digital trash heap (I won't be offended in the least). In the meantime, all the money that comes from the sale of these e-books (minus taxes and a 10 percent donation to church) will be funneled back to helping my mom. Thanks in advance for all your support!
Seems sort of fitting, don't you think? The woman who first inspired my love of reading will be the beneficiary of my first novel.
Saturday, August 4, 2012
One More Week
We hope to have a definitive diagnosis after re-imaging Kaitlyn this coming Friday. It has been a long summer and the wait has been tough. Now we are praying that not only will we know exactly what she's facing - tumor, MS, or one-time lesion - and how to combat it, but also that it might be that one-time lesion option. If it is diagnosed as ADEM (the one-time lesion), then it should be well into the self-resolving stage by now and will not occur again in her lifetime. If it is a tumor, it should be more pronounced, and if it's MS/demyelinating, then we'll probably see another lesion. Finally, if there is no change, we may be asked to wait a few more months. I can't even begin to tell you what that might be like, but it's still better than brain surgery. I'll post again after Friday. Thank you for all your prayers!
Thursday, June 14, 2012
Holding the Course
All the second opinions are in, plus two more from the team at Johns Hopkins and Dr. Norbert Liebsch, a world-reknown radiologist at Mass General. All of them say the same thing: Wait and see. After talking to Dr. Liebsch today, I continue to feel a lot more comfortable with the idea of waiting. He has been beyond nice and super helpful, despite the fact that K has something that doesn't fall into his area of interest (Chordomas) and that he's an extremely busy man. This says a lot about how much he cares about curing kids ... from whatever it turns out to be that ails them. We feel blessed to have a great team here at Denver Children's, but it's also nice to have other eyes focused on K's case, as well.
The next MRI scan is scheduled for mid-August, so unless K's symptoms worsen and we have to scan earlier, we won't know anything until then. It's nice to see her playing and being a normal kid, but it's hard to hear her complaining that her head hurts a lot. Her bouts with headache and sometimes dizziness mostly occur in the middle of the night, first thing in the morning or in the afternoon-evening. At least during the bulk of day, she can have a lot of fun without being in pain.
Daily miracles and blessings ... we thank Heavenly Father for them every day!
The next MRI scan is scheduled for mid-August, so unless K's symptoms worsen and we have to scan earlier, we won't know anything until then. It's nice to see her playing and being a normal kid, but it's hard to hear her complaining that her head hurts a lot. Her bouts with headache and sometimes dizziness mostly occur in the middle of the night, first thing in the morning or in the afternoon-evening. At least during the bulk of day, she can have a lot of fun without being in pain.
Daily miracles and blessings ... we thank Heavenly Father for them every day!
Wednesday, June 6, 2012
Scream ... Take a breath ....
Yesterday morning I wanted to scream. Yesterday afternoon, I felt I could finally take a breath again. It has been a roller-coaster ride, to say the least. We had the NMO test results on Monday and they came back negative. All the markers for MS have been negative, but apparently, about 20-25 percent of the people with MS don't have positive markers. So it's not ruled out. However, the general consensus of the doctors here is STILL to wait. I could not for the life of me understand why we should not do a biopsy now, because the longer we wait, the more that lesion/tumor/mass whatever it is could be growing inside K's brain. I'm not a fan of risky brain surgery, but at the same time I'm not a fan of letting a possibly workable situation turn into an impossible, terminal one.
OK, that's how I felt yesterday morning.
Then we had a conference with the neurosurgeon, the neuro-oncologist and the neurologist about what we are doing going forward. At first the neurosurgeon said he would like to wait up to three months. That didn't give Steve and me warm fuzzies, to say the least. The argument is, the longer you wait, the more information you'll get. But it's a fine line between waiting enough time and waiting too long. Too bad nobody knows exactly where that line is. But the neurosurgeon understood our anxiety level and the neurologist weighed in that 6-8 weeks is probably more feasible. The condition that K will be go in for a neurological exam every week or so in the meantime made us feel a bit more comfortable. We also know what to look for here at home as far as neurological changes. As long as she remains what they call 'asymptomatic,' (mild headaches and dizziness don't really count as symptoms right now) the chances are slim to none that the tumor, if it turns out to be that, is doing anything fast. Also, waiting this time will allow a demyelinating lesion, if that's what it turns out to be, to 'cool down' (shrink slightly or even resolve itself completely). The scan after that time passes could tell them a lot. While we're waiting, we decided to ship another request for a second opinion off to Johns Hopkins and to Dr. Norbert Liebsch, a world-reknowned radiologist and researcher at Mass General (he deals mainly with Chordomas, which K does not have, but he was happy to look at K's scans and pass them around to his team for evaluation).
So, I felt better that afternoon.
Now, we wait, we watch, we pray, and we listen for divine guidance - but we also have decided to put the worry away as best as possible and enjoy our summer. I realize, and I think Steve does, too, that we have been absolutely useless to our children, our home and his work for the past two or so weeks. We're making the conscious decision to take ourselves off the worry train for the next 6-8 weeks. No more Internet searches, no second-guessing, no more second opinions (we have plenty), no more sitting on the couch in a daze wondering about what happens next. The kids deserve better - we deserve better.
I will keep you up to date on K's exams and what happens after we talk to the demyelinating specialist next week. And, of course, I'll let you know if anything changes. Thank you for your continued prayers. We feel the comfort from them every day. I told Steve that even though the Lord has not told us what K has or shown us a well-lit, clear path before us, I feel that the Lord has provided just enough light for each successive step forward. This, I feel, is a great blessing.
Now, let the summer begin!
OK, that's how I felt yesterday morning.
Then we had a conference with the neurosurgeon, the neuro-oncologist and the neurologist about what we are doing going forward. At first the neurosurgeon said he would like to wait up to three months. That didn't give Steve and me warm fuzzies, to say the least. The argument is, the longer you wait, the more information you'll get. But it's a fine line between waiting enough time and waiting too long. Too bad nobody knows exactly where that line is. But the neurosurgeon understood our anxiety level and the neurologist weighed in that 6-8 weeks is probably more feasible. The condition that K will be go in for a neurological exam every week or so in the meantime made us feel a bit more comfortable. We also know what to look for here at home as far as neurological changes. As long as she remains what they call 'asymptomatic,' (mild headaches and dizziness don't really count as symptoms right now) the chances are slim to none that the tumor, if it turns out to be that, is doing anything fast. Also, waiting this time will allow a demyelinating lesion, if that's what it turns out to be, to 'cool down' (shrink slightly or even resolve itself completely). The scan after that time passes could tell them a lot. While we're waiting, we decided to ship another request for a second opinion off to Johns Hopkins and to Dr. Norbert Liebsch, a world-reknowned radiologist and researcher at Mass General (he deals mainly with Chordomas, which K does not have, but he was happy to look at K's scans and pass them around to his team for evaluation).
So, I felt better that afternoon.
Now, we wait, we watch, we pray, and we listen for divine guidance - but we also have decided to put the worry away as best as possible and enjoy our summer. I realize, and I think Steve does, too, that we have been absolutely useless to our children, our home and his work for the past two or so weeks. We're making the conscious decision to take ourselves off the worry train for the next 6-8 weeks. No more Internet searches, no second-guessing, no more second opinions (we have plenty), no more sitting on the couch in a daze wondering about what happens next. The kids deserve better - we deserve better.
I will keep you up to date on K's exams and what happens after we talk to the demyelinating specialist next week. And, of course, I'll let you know if anything changes. Thank you for your continued prayers. We feel the comfort from them every day. I told Steve that even though the Lord has not told us what K has or shown us a well-lit, clear path before us, I feel that the Lord has provided just enough light for each successive step forward. This, I feel, is a great blessing.
Now, let the summer begin!
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