Wednesday, October 17, 2012
Big Day Tomorrow!
Tomorrow, Cam goes in for her first MRI since she started this new clinical trial. Please say an extra prayer for her tonight for a nice STABLE scan. If you don't pray, just lift up a positive thought for her. This is a VERY important scan...
Thursday, September 13, 2012
Monday, August 13, 2012
ANOTHER bump in the road...
Unfortunately, Campbells scan last week did not show the improvement we were hoping for. One of the spots that was on the left side of her brain after the May scan - and that was supposed to be being treated with the Sutent that she has been taking - has grown significantly over the past 2 months. In addition, she has two new tumors growing on the right side of her brain now as well as some growth on one of the tumors in her spine.
SO...now we will be meeting with the doctors at Sloan Kettering in NYC to get her started on the CERN trial that was being considered as of our last post. We hope and pray that this is going to be the right combination of drugs to stop these tumors from growing. Robin has also contacted the folks at St Jude's to talk about Cam's case and see if they can weigh in with their opinion on what the best chance for her is. As it stands right now, surgery is not an option as there are several locations that we are dealing with. Radiation again is not something that Dana Farber is interested in suggesting due to the damage that could be caused as a result of treating this area of Cambells brain. St Jude's has not ruled this out but would look to do conformal radiation as opposed to proton's again. Luckily (?), this means that we have a few more options available to us.
For now, we will continue to enjoy the wonderful, strong, amazing girl that she continues to be. The doctors continue to be amazed by her clinical exam as compared to her scan results. We now are back to watching for potential side effects of the tumor and hope that we don't see any as they are not very pleasant to think about (seizures, back/leg pain, speech issues, etc).
I ask that you all say another prayer for Cam, her sisters, and her doctors as we take another turn in this journey.
With Love,
Greg, Robin, Caitlin, Caroline and Campbell
SO...now we will be meeting with the doctors at Sloan Kettering in NYC to get her started on the CERN trial that was being considered as of our last post. We hope and pray that this is going to be the right combination of drugs to stop these tumors from growing. Robin has also contacted the folks at St Jude's to talk about Cam's case and see if they can weigh in with their opinion on what the best chance for her is. As it stands right now, surgery is not an option as there are several locations that we are dealing with. Radiation again is not something that Dana Farber is interested in suggesting due to the damage that could be caused as a result of treating this area of Cambells brain. St Jude's has not ruled this out but would look to do conformal radiation as opposed to proton's again. Luckily (?), this means that we have a few more options available to us.
For now, we will continue to enjoy the wonderful, strong, amazing girl that she continues to be. The doctors continue to be amazed by her clinical exam as compared to her scan results. We now are back to watching for potential side effects of the tumor and hope that we don't see any as they are not very pleasant to think about (seizures, back/leg pain, speech issues, etc).
I ask that you all say another prayer for Cam, her sisters, and her doctors as we take another turn in this journey.
With Love,
Thursday, May 17, 2012
Another bump in the road
Unfortunately, Cam has hit another bump in her road to recovery. On her first post-radiation scan on May 2nd, the doctors found 2 new tumors on the left side of her brain as well as some additional areas of concern at the top of her brain.
Since that time, we have been feverishly working to find out the right treatment plan for her to follow. No one is too eager to radiate the rest of her head. The risks associated with that are far to severe according to the neuro-oncologists. Originally, we were told that she was not eligible for the two clinical trials that would have been good for her. So, we proceeded to look for the right drug to stop the growth of these new tumors.
Shortly after coming to a decision on one drug (and I mean SHORTLY - like 20 minutes) we received new information from the doctors that she actually IS eligible for not one, but BOTH of the clinical trials that we were previously told she could not participate in.
Trial 1 is being run at Memorial Sloan Kettering Cancer Center in NYC and is developed by CERN (Collaborative Ependymoma Research Network). It involves 2 drugs - Avastin and Lopatnib). Cam would need to get an IV infusion of the Avastin and be seen multiple times per week.
Trial 2 would be handled out of our local hospital by the oncology team that originally cared for Cam and would involve only 1 drug (Sutent).
Yesterday, Robin spent the majority of the day with Campbell at the local hospital for blood work, EKG, ECG, more blood work in preparation to start Trial 2. Just to further complicate things, the hospital has to run participation in any clinical trials through their legal team as well as their Internal Review Board. This information was given to them a week ago so that we could make this happen. In typical fashion, the IRB did NOT approve it yesterday (the doctor that needed to wasn't available...must have had a tee time). Which means, Cam will have to have ANOTHER MRI (it needs to have occurred no more than 2 weeks before starting the trial which would have been yesterday). UGH!!!!!
Today, we will meet with the doctors at Sloan to discuss trial 1 further.
We have also learned participation in Trial 1 would exclude her from participating in Trial 2 later (because of the drugs being taken, apparently). So, while it looks like they are both options, this may be the deciding factor. The doctors at both Dana Farber (Boston) and at the Valerie Center (home) are equally happy with whichever one WE choose (isn't this why we pay THEM?). All things being equal, trial 2 would be easier for us to manage and for Cam (it is oral as opposed to a two drug infusion).
For now, Cam has really not shown any symptoms from the 2 new tumors in her head. The tumors in her spine that have already been treated are stable (which in her world is just as good as gone) - which is really good news. We will keep you all posted as we travel down yet another new path for Cam.
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Since that time, we have been feverishly working to find out the right treatment plan for her to follow. No one is too eager to radiate the rest of her head. The risks associated with that are far to severe according to the neuro-oncologists. Originally, we were told that she was not eligible for the two clinical trials that would have been good for her. So, we proceeded to look for the right drug to stop the growth of these new tumors.
Shortly after coming to a decision on one drug (and I mean SHORTLY - like 20 minutes) we received new information from the doctors that she actually IS eligible for not one, but BOTH of the clinical trials that we were previously told she could not participate in.
Trial 1 is being run at Memorial Sloan Kettering Cancer Center in NYC and is developed by CERN (Collaborative Ependymoma Research Network). It involves 2 drugs - Avastin and Lopatnib). Cam would need to get an IV infusion of the Avastin and be seen multiple times per week.
Trial 2 would be handled out of our local hospital by the oncology team that originally cared for Cam and would involve only 1 drug (Sutent).
Yesterday, Robin spent the majority of the day with Campbell at the local hospital for blood work, EKG, ECG, more blood work in preparation to start Trial 2. Just to further complicate things, the hospital has to run participation in any clinical trials through their legal team as well as their Internal Review Board. This information was given to them a week ago so that we could make this happen. In typical fashion, the IRB did NOT approve it yesterday (the doctor that needed to wasn't available...must have had a tee time). Which means, Cam will have to have ANOTHER MRI (it needs to have occurred no more than 2 weeks before starting the trial which would have been yesterday). UGH!!!!!
Today, we will meet with the doctors at Sloan to discuss trial 1 further.
We have also learned participation in Trial 1 would exclude her from participating in Trial 2 later (because of the drugs being taken, apparently). So, while it looks like they are both options, this may be the deciding factor. The doctors at both Dana Farber (Boston) and at the Valerie Center (home) are equally happy with whichever one WE choose (isn't this why we pay THEM?). All things being equal, trial 2 would be easier for us to manage and for Cam (it is oral as opposed to a two drug infusion).
For now, Cam has really not shown any symptoms from the 2 new tumors in her head. The tumors in her spine that have already been treated are stable (which in her world is just as good as gone) - which is really good news. We will keep you all posted as we travel down yet another new path for Cam.
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Thursday, April 19, 2012
Human Kindness and Generosity
Alot has happened since our last post on 2/22... sorry for the delay! Greg and I forget that not everyone is on Facebook...
Campbell finished up the third, and last ever, round of proton beam radiation therapy in Boston on 3/20. I say the last, because it truly is the last. She cannot have any more radiation to her brain or spine. This is frightening for us. Radiation is the best treatment option for Ependymoma. This means if it comes back again, Campbell cannot have the best treatment... We hope and pray that this will never happen!
We came home from Boston on the 20th. Cam had a restful week at home, waiting for clearance to return to school. Well, antsy really. Cam REALLY wanted to go back to school and was not very happy about waiting any longer! She was cleared on the 3/26 and returned to an awesome welcoming by her class on 3/27. They greeted her in the hallway with hand-made party-hats and signs reading "Welcome Back" and "We missed you". It was touching and amazing. Campbell was all smiles :-).
The last few weeks have been fairly normal (a nice change for us). We've slowly gotten back into the routine of our normal life. Of course, this includes doctor's visits. Cam needed another transfusion while the girls were off from school for Spring Break. This was the fourth transfusion since December! The combination of chemotherapy and radiation to the spine have done a number on her bone marrow. The doctor's have warned us that this will probably be the norm for Cam while on chemo, although hopefully the frequency will start to lessen. Between 2/16 and 4/2, Campbell had three transfusions! The effects of the radiation will weaken the further out we get from completion. We are optimistic that her bone marrow will start producing new healthy red blood cells soon.
Greg and I have been struggling with learning the ins and outs of our new insurance policy. (His employer changed providers as of January 1). As you can imagine, for someone with the extraordinary circumstances like Campbell, new insurance is daunting. We've recently learned that all was not as it originally seemed and our co-pays have skyrocketed. Cam's meds, which previously cost approximately $300 per month, are now $500. Clinic visits, previously $25 each, are now $50 each. It seems small, but Campbell goes to Clinic at least every three weeks, sometimes as often as 4 or 5 times per month! Her MRIs, which occur at least every 3 months, sometimes more frequently, were previously $25 per visit. They are now $1600 each!!! Ouch! And this is a co-pay. They ARE covered. The actual cost billed by the hospital for one of Campbell's full brain and spine MRIs averages $25,000. Can you imagine if we didn't have insurance??? Oh, that is enough to make my heart skip a beat!
With all of these increased costs in mind, several local groups have hosted quite a few fundraisers for Campbell. We would like to take this opportunity to express our deepest gratitude to the Watchung Hills Lady Warriors Basketball team for hosting a "Gold Game" against Bernards High. The teams sported gold laces, sold gold t-shirts and auctioned off many incredible items, all to raise awareness for the epidemic known as Childhood Cancer and contribute to Campbell's medical trust.
Heartworks, a local grass-roots non-profit organization whose focus is on acts of kindness, has been incredible. They truly leave me speechless (which if you know me, is difficult to do) each time I try to describe the difference they have made in our lives. They provide emotional support, offer prayers for healing for our sweet Cam, send reminders to Caitlin and Caroline that they are just as important as Campbell, fed Greg and the girls while Campbell and I were in Boston, drop off random gift cards for a little treat at Starbucks, for a girls' outing to get our nails done, pizza for dinner on Fridays during Lent. In addition to these many "little" things, these amazing women hosted a pie fundraiser last fall and a Valentine's pop sale in February, both benefitting Cam's medical trust.
An incredible group of local women, who have labeled themselves the "Sister of the Bar" (and no, not THAT kind of bar :-) - they exericse together at the Bar Method in Bernardsville), sold awesome t-shirts during the holidays to benefit Cam. They have now teamed up with Atelier Salon & Spa in Basking Ridge to host a "Cuts for Campbell" benefit on Sunday, April 29th. The Salon will be open from 10-4, with all services available and all proceeds from services that day going to Campbell's medical trust. If you are interested in making an appointment, contact the Salon directly at 908-766-4630
Lastly, Campbell's fans have moved beyond the Bernardsville/Basking Ridge area. The bowling team from JP Stevens High School in Edison, NJ, who have never met Campbell, hosted a fundraiser on February 28th. Their coach is a neighbor and friend of Campbell's grandparents in Dayton, NJ. Unbelieveable. The kindness of people is astounding. These are kids who have no personal connection to Campbell. There event is called GAGA, for Give a Gift Away. The gift they gave away that day has already made an impact on Campbell's life.
Even bigger than simply helping Campbell, all of these events have raised awareness for a subject very close to our hearts. Childhood Cancer. Before Campbell was diagnosed, I would turn away from the St. Jude's commercials, the bald children were too sad to look at. I am embarassed to admit my shameful behavior. Campbell's diagnosis opened my eyes, Greg's eyes, Caitlin and Caroline's eyes... the list goes on. I was disturbed when I starting researching about cures. There is very little federal money spent on Childhood Cancer research. Even worse, many organizations who I instantly thought would be a good avenue for research for kids like Cam, shocked me when I learned they spend $.01 of every dollar raised on kid's research. That's it. The kids are our future.
I have become very vocal of my disdain for these organizations and praising organizations like St. Baldrick's, Alex's Lemonade Stand, Cookies for Kids' Cancer, CureSearch and last, but certainly not least, the CERN Foundation. The CERN Foundation is the one organization that will best be able to help Campbell, and the other 6% of childhood cancer patients diagnosed with Ependymoma. Their sole focus is researching a cure for Ependymoma. In fact, today, April 19th, 2012, is the first ever Ependymoma Awareness Day. In celebration of today, I ask all of you to continue to raise awareness. Tell Campbell's story, including the name of her cancer - Anaplastic Ependymoma - to one new person. It is through awareness that funding will be raised and a cure will be found.
With love, gratitude and humility,
Robin
Campbell finished up the third, and last ever, round of proton beam radiation therapy in Boston on 3/20. I say the last, because it truly is the last. She cannot have any more radiation to her brain or spine. This is frightening for us. Radiation is the best treatment option for Ependymoma. This means if it comes back again, Campbell cannot have the best treatment... We hope and pray that this will never happen!
We came home from Boston on the 20th. Cam had a restful week at home, waiting for clearance to return to school. Well, antsy really. Cam REALLY wanted to go back to school and was not very happy about waiting any longer! She was cleared on the 3/26 and returned to an awesome welcoming by her class on 3/27. They greeted her in the hallway with hand-made party-hats and signs reading "Welcome Back" and "We missed you". It was touching and amazing. Campbell was all smiles :-).
The last few weeks have been fairly normal (a nice change for us). We've slowly gotten back into the routine of our normal life. Of course, this includes doctor's visits. Cam needed another transfusion while the girls were off from school for Spring Break. This was the fourth transfusion since December! The combination of chemotherapy and radiation to the spine have done a number on her bone marrow. The doctor's have warned us that this will probably be the norm for Cam while on chemo, although hopefully the frequency will start to lessen. Between 2/16 and 4/2, Campbell had three transfusions! The effects of the radiation will weaken the further out we get from completion. We are optimistic that her bone marrow will start producing new healthy red blood cells soon.
Greg and I have been struggling with learning the ins and outs of our new insurance policy. (His employer changed providers as of January 1). As you can imagine, for someone with the extraordinary circumstances like Campbell, new insurance is daunting. We've recently learned that all was not as it originally seemed and our co-pays have skyrocketed. Cam's meds, which previously cost approximately $300 per month, are now $500. Clinic visits, previously $25 each, are now $50 each. It seems small, but Campbell goes to Clinic at least every three weeks, sometimes as often as 4 or 5 times per month! Her MRIs, which occur at least every 3 months, sometimes more frequently, were previously $25 per visit. They are now $1600 each!!! Ouch! And this is a co-pay. They ARE covered. The actual cost billed by the hospital for one of Campbell's full brain and spine MRIs averages $25,000. Can you imagine if we didn't have insurance??? Oh, that is enough to make my heart skip a beat!
With all of these increased costs in mind, several local groups have hosted quite a few fundraisers for Campbell. We would like to take this opportunity to express our deepest gratitude to the Watchung Hills Lady Warriors Basketball team for hosting a "Gold Game" against Bernards High. The teams sported gold laces, sold gold t-shirts and auctioned off many incredible items, all to raise awareness for the epidemic known as Childhood Cancer and contribute to Campbell's medical trust.
Heartworks, a local grass-roots non-profit organization whose focus is on acts of kindness, has been incredible. They truly leave me speechless (which if you know me, is difficult to do) each time I try to describe the difference they have made in our lives. They provide emotional support, offer prayers for healing for our sweet Cam, send reminders to Caitlin and Caroline that they are just as important as Campbell, fed Greg and the girls while Campbell and I were in Boston, drop off random gift cards for a little treat at Starbucks, for a girls' outing to get our nails done, pizza for dinner on Fridays during Lent. In addition to these many "little" things, these amazing women hosted a pie fundraiser last fall and a Valentine's pop sale in February, both benefitting Cam's medical trust.
An incredible group of local women, who have labeled themselves the "Sister of the Bar" (and no, not THAT kind of bar :-) - they exericse together at the Bar Method in Bernardsville), sold awesome t-shirts during the holidays to benefit Cam. They have now teamed up with Atelier Salon & Spa in Basking Ridge to host a "Cuts for Campbell" benefit on Sunday, April 29th. The Salon will be open from 10-4, with all services available and all proceeds from services that day going to Campbell's medical trust. If you are interested in making an appointment, contact the Salon directly at 908-766-4630
Lastly, Campbell's fans have moved beyond the Bernardsville/Basking Ridge area. The bowling team from JP Stevens High School in Edison, NJ, who have never met Campbell, hosted a fundraiser on February 28th. Their coach is a neighbor and friend of Campbell's grandparents in Dayton, NJ. Unbelieveable. The kindness of people is astounding. These are kids who have no personal connection to Campbell. There event is called GAGA, for Give a Gift Away. The gift they gave away that day has already made an impact on Campbell's life.
Even bigger than simply helping Campbell, all of these events have raised awareness for a subject very close to our hearts. Childhood Cancer. Before Campbell was diagnosed, I would turn away from the St. Jude's commercials, the bald children were too sad to look at. I am embarassed to admit my shameful behavior. Campbell's diagnosis opened my eyes, Greg's eyes, Caitlin and Caroline's eyes... the list goes on. I was disturbed when I starting researching about cures. There is very little federal money spent on Childhood Cancer research. Even worse, many organizations who I instantly thought would be a good avenue for research for kids like Cam, shocked me when I learned they spend $.01 of every dollar raised on kid's research. That's it. The kids are our future.
I have become very vocal of my disdain for these organizations and praising organizations like St. Baldrick's, Alex's Lemonade Stand, Cookies for Kids' Cancer, CureSearch and last, but certainly not least, the CERN Foundation. The CERN Foundation is the one organization that will best be able to help Campbell, and the other 6% of childhood cancer patients diagnosed with Ependymoma. Their sole focus is researching a cure for Ependymoma. In fact, today, April 19th, 2012, is the first ever Ependymoma Awareness Day. In celebration of today, I ask all of you to continue to raise awareness. Tell Campbell's story, including the name of her cancer - Anaplastic Ependymoma - to one new person. It is through awareness that funding will be raised and a cure will be found.
With love, gratitude and humility,
Robin
Wednesday, February 22, 2012
Update - 2/22
Hello out there!
A lot has happened since our last post - not the least of which is that Cam FINALLY got over her GI issues on day 28!
After a great deal of debate between Robin and I and the doctors between each other - we decided to proceed with another 28 rounds of radiation treatment for the tumor growing on Cam's spine. What it ultimately boiled down to was we were not willing to wait for this thing to grow and start causing her to be in the same amount of pain as she was over the summer last year. So we are going to throw everything we got at this and hope and pray for the best outcome possible (and given her response the last two tumors we have reason to be cautiously optimistic).
So Cam started another 6 weeks of radiation on February 9th up in Boston. Unfortunately, that means another 7 weeks of our family being apart, but what can you do? During her planning MRI (pre-radiation), the scan did show that the tumor had grown very slightly - which confirms our decision to move forward with radiation.
She is already through 8 treatments (and as I type this, getting ready for #9). She also remains on the chemotherapy that she has been taking since October. She continues to amaze us more and more every day with her bravery and strength.
Her sisters were and I were able to visit over President's Day Weekend - which was a nice change of pace for everyone.
Thanks for your continued thoughts and prayers!
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
A lot has happened since our last post - not the least of which is that Cam FINALLY got over her GI issues on day 28!
After a great deal of debate between Robin and I and the doctors between each other - we decided to proceed with another 28 rounds of radiation treatment for the tumor growing on Cam's spine. What it ultimately boiled down to was we were not willing to wait for this thing to grow and start causing her to be in the same amount of pain as she was over the summer last year. So we are going to throw everything we got at this and hope and pray for the best outcome possible (and given her response the last two tumors we have reason to be cautiously optimistic).
So Cam started another 6 weeks of radiation on February 9th up in Boston. Unfortunately, that means another 7 weeks of our family being apart, but what can you do? During her planning MRI (pre-radiation), the scan did show that the tumor had grown very slightly - which confirms our decision to move forward with radiation.
She is already through 8 treatments (and as I type this, getting ready for #9). She also remains on the chemotherapy that she has been taking since October. She continues to amaze us more and more every day with her bravery and strength.
Her sisters were and I were able to visit over President's Day Weekend - which was a nice change of pace for everyone.
Thanks for your continued thoughts and prayers!
With Love,
Greg, Robin, Caitlin, Caroline & Campbell
Monday, January 23, 2012
It's been a while...
I just looked and realized that it has been a while since we last updated those interested (and not on Facebook) on Campbell.
After her scan in December showed some growth of the tumor in her spine, they scheduled and performed another MRI on January 10th. There hope was that the tumor would show some response to the chemotherapy regimen that she has been on for some time. The scan went well and showed that the tumor was stable and had NOT grown in the 6 weeks.
We are still debating what the next steps are for her. In the meantime, Cam continues to be her happy self and is tolerating the chemo well. Her hair, is almost completely gone which still does not bother her. Unfortunately, she caught a stomach bug around New Year and has not been able to kick it. Today is day 25 of her GI issues so we have an appointment scheduled with a gastroenterologist on Wednesday morning to see what else might be going on. Hopefully, they can find some relief for her and she can make it back to school soon.
We'll keep you posted!
With Love,
Greg, Robin, Caitlin Caroline & Cam
After her scan in December showed some growth of the tumor in her spine, they scheduled and performed another MRI on January 10th. There hope was that the tumor would show some response to the chemotherapy regimen that she has been on for some time. The scan went well and showed that the tumor was stable and had NOT grown in the 6 weeks.
We are still debating what the next steps are for her. In the meantime, Cam continues to be her happy self and is tolerating the chemo well. Her hair, is almost completely gone which still does not bother her. Unfortunately, she caught a stomach bug around New Year and has not been able to kick it. Today is day 25 of her GI issues so we have an appointment scheduled with a gastroenterologist on Wednesday morning to see what else might be going on. Hopefully, they can find some relief for her and she can make it back to school soon.
We'll keep you posted!
With Love,
Greg, Robin, Caitlin Caroline & Cam
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