Tuesday, May 31, 2011
Appointment Thursday 6/2
Charles has an appointment with the radiation oncologist on Thursday 6/2. It's at 9am.. I'm so not looking forward to having to sit in rush hour morning traffic into Boston! Yuck!! Also getting up at like 6AM is not cool... oh well, at least Charles won't have to take time off of work, which is important. Anyway, we're meeting with Dr. Alexander at Brigham & Womens. They referred us to Dr. Weiss who I can see based on the doctor profiles on their website is their brain tumor person, but she's out of the office this week and we want to get information ASAP, so we're meeting with Dr. Alexander this week and we will see what happens from there! I will update hopefully on Thursday with what we find out.
Thursday, May 26, 2011
Please Help Fund Meningioma Research!
Here's an email I received from Meningioma Mommas. Please consider making a donation/cookbook purchase to help find answers for Charles and others like him.
As you are already well aware, May is National Brain Tumor Awareness Month and for the last 25 days, Meningioma Mommas has been running a “Mmm Mmm Mmm Meningioma Match” campaign made possible by the generous support of the Gilkison Family Foundation.
For every “Feeding the Mind & Soul Cookbook” (a collaboration of our very own survivors and their caregivers best recipes), purchased, the Gilkison Family Foundation is making a $25 match. This has been an unbelievable opportunity for Meningioma Mommas to potentially donate $20,000 to meningioma specific research, which is the only research we fund.
To achieve this goal, all we have to do is find cooks and kitchens for 400 cookbooks.
As of today, we’ve sold 83 cookbooks—nearly 25% of our target goal.
We only need to sell 317 more by June 1!
I’d like to ask the Gilkison Family Foundation to write a check for $10,000 instead of $2,075, which is currently the amount I’ll be asking of them.
I am more than grateful to those who’ve already participated in the match and extend my gratitude in advance to the rest who I’m hoping will consider helping.
Cookbooks are $25 each.
You may purchase a cookbook via our PayPal link:
http://www.meningiomamommas.org/mommas-merchandise
Or send a check (which still counts even if it arrives after June 1!) made payable to Meningioma Mommas to:
Meningioma Mommas
9249 S. Broadway Blvd.
Unit 200-PMB#240
Highlands Ranch, CO 80129
With every purchased cookbook, a $50 contribution will be made to fund ongoing research for an ongoing incurable disease.
Thank you!
--
Best wishes,
Liz Holzemer
Founder, Meningioma Mommas
&
Lindy Klarenbeek
Executive Director, Meningioma Mommas
As you are already well aware, May is National Brain Tumor Awareness Month and for the last 25 days, Meningioma Mommas has been running a “Mmm Mmm Mmm Meningioma Match” campaign made possible by the generous support of the Gilkison Family Foundation.
For every “Feeding the Mind & Soul Cookbook” (a collaboration of our very own survivors and their caregivers best recipes), purchased, the Gilkison Family Foundation is making a $25 match. This has been an unbelievable opportunity for Meningioma Mommas to potentially donate $20,000 to meningioma specific research, which is the only research we fund.
To achieve this goal, all we have to do is find cooks and kitchens for 400 cookbooks.
As of today, we’ve sold 83 cookbooks—nearly 25% of our target goal.
We only need to sell 317 more by June 1!
I’d like to ask the Gilkison Family Foundation to write a check for $10,000 instead of $2,075, which is currently the amount I’ll be asking of them.
I am more than grateful to those who’ve already participated in the match and extend my gratitude in advance to the rest who I’m hoping will consider helping.
Cookbooks are $25 each.
You may purchase a cookbook via our PayPal link:
http://www.meningiomamommas.org/mommas-merchandise
Or send a check (which still counts even if it arrives after June 1!) made payable to Meningioma Mommas to:
Meningioma Mommas
9249 S. Broadway Blvd.
Unit 200-PMB#240
Highlands Ranch, CO 80129
With every purchased cookbook, a $50 contribution will be made to fund ongoing research for an ongoing incurable disease.
Thank you!
--
Best wishes,
Liz Holzemer
Founder, Meningioma Mommas
&
Lindy Klarenbeek
Executive Director, Meningioma Mommas
Sunday, May 22, 2011
A Regretful Update
It has been lovely not having anything to update this blog with in the past 15 months...
Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).
We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.
Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.
On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.
And then she told us the news.. the tumor has begun growing back.
Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.
We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.
Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.
The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.
I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.
Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.
I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.
A recent picture of Charlie with his nephew :)
As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.
Learn more, get support, and make a donation. - Meningioma Mommas
In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.
Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).
We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.
Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.
On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.
And then she told us the news.. the tumor has begun growing back.
Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.
We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.
Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.
The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.
I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.
Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.
I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.
A recent picture of Charlie with his nephew :)
As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.
Learn more, get support, and make a donation. - Meningioma Mommas
In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.
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