Life has thrown us some curves
Last year (2009) at this time we were celebrating our grandaughter Rebecca's graduation from high school. So proud to see her passing another milestone in her life and planning to go off to college at Bennington College in Vermont in the Fall. Well, she did go off to college and didn't seem to be enjoying it as much as she had hoped. She wasn't feeling well for a few weeks and told her mother (my duaghter Julianne) that she was having some vision problems, probably caused by all the computer work in animation class etc. So Julianne told her to go see the nurse. She did and was sent to an Opthalmologist (sp?). That's when the curve ball started our way.
The doctor found her optic nerves were swollen and recommended that she have an MRI.
November 5th: Julianne and Rebecca's Dad flew up to Bennington to be with Rebecca while she had the MRI. The child has never been sick, so the thought of going into a strange hospital so far from home was naturally very disconcerting. Good thing they did. The MRI showed a brain tumor. A BRAIN TUMOR?!? In Rebecca's head? Shock is an understatement. So then the slow process began of deciding what to do and how to proceed. She needed surgery to get a biopsy. Some opinions were that it was MS. A spinal tap was done and fluid sent to Mayo. Her ICP (intra-cranial pressure) going in was 144 and coming out was something like 22..... She felt better after the spinal tap because her ICP was down, but she still saw "sparkly things" in her vision.
Okay, cut to December and she's home from Bennington and waiting on surgery. December 14th celebrates her 19th birthday. December 17th undergoes BRAIN SURGERY! BRAIN SURGERY! My grandaughter has brain surgery. Am I dreaming or in another world? Julianne had to go to Virginia Beach and stayed in a room at Scotty's house (yes, her ex-husband and Rebecca's dad.) Staying at the Portsmouth Naval Hospital except to go home for a shower and change of clothes, she struggled to be strong for Rebecca but she did tell me she fell apart after seeing her in the ICU. Why wasn't I there to comfort my child? (Oh yeah, taking care of her dogs!) Recovery went well and Rebecca said she had never felt so good.
Cut to the week between Christmas and New Years and the results show - ready for this? - Grade 3 Anaplastic Astrocytoma. YES! A DAMN MALIGNANT BRAIN TUMOR! I think I cried for a week after that. (I know I cried myself to sleep that night.) We are all devastated. And while the surgery did debulk the tumor as a result of taking tissue to biopsy and trying to clean out as much as they could, the diagnosis meant that she would have to undergo radiation and chemotherapy. What? The worst cancer we have had in our family has been colon cancer and the only person it killed was my grandmother because she never went to the doctor and took too many laxatives and they didn't find it until she was almost dead. I repeat, Rebecca has NEVER been sick except for colds and allergies. And DON"T get me started on all the reasons NOT to look up stuff on the internet. Oh, I just wanted to find out what this was. Oh was I sorry.
So now the tug-of-war starts as to where she will be treated, etc. My daughter is about worn out by January and has now stayed one month in Scotty's house and spent Christmas with her ex-in-laws. Don't get me wrong, they're wonderful people. But they are EX-inlaws and Julianne still has some scars, if you know what I mean.
Decisions - go to NIH and get in a clinical trial. They did and got her into an observational clinical trial. Go to MUSC to see Dr. Patel. They did and were set up for radiation. Julianne had to take off six weeks work in addition to the already month she had lost in December. Unpaid leave. Financial hardship? You could say that. Fortunately an old family friend of Scotty's came forward and helped out so that Julianne didn't have to concentrate on anything but taking care of Rebecca. And SO MANY family and friends (including friends of mine - Hat Ladies - who didn't know Julianne or Rebecca.) What would we do without such wonderful people in this world?
Radiation couldn't start until the surgical wound was fully healed and she got the okay from her neurosurgeon. So six weeks of radiation at MUSC, began I believe in February - every weekday, and daily chemo (Temodar). Rebecca started feeling tired about the seconded or third week and then the hair started falling out. Not all of it came out, just the areas that were being radiated. So on the right side she has a lovely thick head of hair and on the left side - well, not so much. But she's cool with it and finds herself a cute little cap to wear. She gained weight on the steroids that she had to take for inflammation and whatever and she started eating really healthy. A HUGE change for her as we always called her our "junk food junkie".
After the six weeks they moved back to Columbia and she shad to wait to see Dr. Giglio again and a few days or week later started the Temodar regimen. Five days of chemo and off for 23. Visit MUSC to get blood work done and see Dr. Giglio and get the okay to do another round. She's had two rounds so far. She has lost weight.
NIH - April MRI at NIH and a visit to their good Dr. Fine. Nothing much changed. Julianne calls their MRI the "superwankadine" machine. Latest technology and all that good stuff. They will see her every two months and pay all expenses for travel, lodging and visits.
OKay so two rounds of chemo and another visit to NIH late June. This time the MRI shows that the tumor is growing and/or radiation necrosis - tumor and healthy tissue that is dying as a result of the radiation. The tumor is described by them as "angry". (You want angry? Keep messing with my Rebecca you damn cancer). The good news is that the diffuse cancer cells that were in the back of her brain near her occipital lobes has completely disappeared.
So now a plan has to be made. Put her back on steroids. And after talking with Dr. Fine and having Rebecca's tests reviewed by the NIH tumor board, the decision is made to do surgery. This time to try to remove as much tumor/necrotic tissue as they can and hopefully get clear margins. The surgery will be at NIH and done by their "hand-picked, Harvard trained" neurosurgeon.
Julianne and I are relieved that Dr. Fine said she should have surgery. We want the damn thing out. Rebecca doesn't want to have to go through surgery, but she said if that's what it takes to get rid of and fight this "beast" then that's what she will do. Who knew that this once "little girl afraid of bandaids" would grow up to be such a strong young woman. I think she is handling this better than Julianne, Frank and I are.
No need to keep beating my head against the wall and railing about how unfair this is to have brain cancer happen to such a fine young person. There are plenty of people out there who are battling devastating illnesses with their children. Babies die every day. You only have to look at Caring Bridge to see the kinds of things happening. It makes me sick. There are so many people out there who don't want to live. Who abuse themselves on alcohol or drugs and yet they walk the streets every day, stealing, lying and begging just to get that next bottle of booze or that next fix. And here is a young woman who just wants to go to college and pursue her passion of theater, art and writing. And she is the one who gets brain cancer. Where in the hell is the justice in that! Did I mention how unbelievably surreal it is to talk about my precious Rebecca and cancer in the same breath?
Thankfully Rebecca has remained asymtomatic through all of this. She feels great. She is continuing with her art. SO TALENTED! And enjoys every day. She baffles all of the doctors with how otherwise healthy she is.
We hope and pray that this surgery will take care of the beast and allow her to get back to living life the way she had planned. I always sign off on my journal postings and say to her "Love you always and forever you will be the apple of my eye." So tonight as sad as I feel, I can't help but smile when I think of how proud I am of this precious, beautiful, wonderful girl who will always be the apple of my eye. More later.
The doctor found her optic nerves were swollen and recommended that she have an MRI.
November 5th: Julianne and Rebecca's Dad flew up to Bennington to be with Rebecca while she had the MRI. The child has never been sick, so the thought of going into a strange hospital so far from home was naturally very disconcerting. Good thing they did. The MRI showed a brain tumor. A BRAIN TUMOR?!? In Rebecca's head? Shock is an understatement. So then the slow process began of deciding what to do and how to proceed. She needed surgery to get a biopsy. Some opinions were that it was MS. A spinal tap was done and fluid sent to Mayo. Her ICP (intra-cranial pressure) going in was 144 and coming out was something like 22..... She felt better after the spinal tap because her ICP was down, but she still saw "sparkly things" in her vision.
Okay, cut to December and she's home from Bennington and waiting on surgery. December 14th celebrates her 19th birthday. December 17th undergoes BRAIN SURGERY! BRAIN SURGERY! My grandaughter has brain surgery. Am I dreaming or in another world? Julianne had to go to Virginia Beach and stayed in a room at Scotty's house (yes, her ex-husband and Rebecca's dad.) Staying at the Portsmouth Naval Hospital except to go home for a shower and change of clothes, she struggled to be strong for Rebecca but she did tell me she fell apart after seeing her in the ICU. Why wasn't I there to comfort my child? (Oh yeah, taking care of her dogs!) Recovery went well and Rebecca said she had never felt so good.
Cut to the week between Christmas and New Years and the results show - ready for this? - Grade 3 Anaplastic Astrocytoma. YES! A DAMN MALIGNANT BRAIN TUMOR! I think I cried for a week after that. (I know I cried myself to sleep that night.) We are all devastated. And while the surgery did debulk the tumor as a result of taking tissue to biopsy and trying to clean out as much as they could, the diagnosis meant that she would have to undergo radiation and chemotherapy. What? The worst cancer we have had in our family has been colon cancer and the only person it killed was my grandmother because she never went to the doctor and took too many laxatives and they didn't find it until she was almost dead. I repeat, Rebecca has NEVER been sick except for colds and allergies. And DON"T get me started on all the reasons NOT to look up stuff on the internet. Oh, I just wanted to find out what this was. Oh was I sorry.
So now the tug-of-war starts as to where she will be treated, etc. My daughter is about worn out by January and has now stayed one month in Scotty's house and spent Christmas with her ex-in-laws. Don't get me wrong, they're wonderful people. But they are EX-inlaws and Julianne still has some scars, if you know what I mean.
Decisions - go to NIH and get in a clinical trial. They did and got her into an observational clinical trial. Go to MUSC to see Dr. Patel. They did and were set up for radiation. Julianne had to take off six weeks work in addition to the already month she had lost in December. Unpaid leave. Financial hardship? You could say that. Fortunately an old family friend of Scotty's came forward and helped out so that Julianne didn't have to concentrate on anything but taking care of Rebecca. And SO MANY family and friends (including friends of mine - Hat Ladies - who didn't know Julianne or Rebecca.) What would we do without such wonderful people in this world?
Radiation couldn't start until the surgical wound was fully healed and she got the okay from her neurosurgeon. So six weeks of radiation at MUSC, began I believe in February - every weekday, and daily chemo (Temodar). Rebecca started feeling tired about the seconded or third week and then the hair started falling out. Not all of it came out, just the areas that were being radiated. So on the right side she has a lovely thick head of hair and on the left side - well, not so much. But she's cool with it and finds herself a cute little cap to wear. She gained weight on the steroids that she had to take for inflammation and whatever and she started eating really healthy. A HUGE change for her as we always called her our "junk food junkie".
After the six weeks they moved back to Columbia and she shad to wait to see Dr. Giglio again and a few days or week later started the Temodar regimen. Five days of chemo and off for 23. Visit MUSC to get blood work done and see Dr. Giglio and get the okay to do another round. She's had two rounds so far. She has lost weight.
NIH - April MRI at NIH and a visit to their good Dr. Fine. Nothing much changed. Julianne calls their MRI the "superwankadine" machine. Latest technology and all that good stuff. They will see her every two months and pay all expenses for travel, lodging and visits.
OKay so two rounds of chemo and another visit to NIH late June. This time the MRI shows that the tumor is growing and/or radiation necrosis - tumor and healthy tissue that is dying as a result of the radiation. The tumor is described by them as "angry". (You want angry? Keep messing with my Rebecca you damn cancer). The good news is that the diffuse cancer cells that were in the back of her brain near her occipital lobes has completely disappeared.
So now a plan has to be made. Put her back on steroids. And after talking with Dr. Fine and having Rebecca's tests reviewed by the NIH tumor board, the decision is made to do surgery. This time to try to remove as much tumor/necrotic tissue as they can and hopefully get clear margins. The surgery will be at NIH and done by their "hand-picked, Harvard trained" neurosurgeon.
Julianne and I are relieved that Dr. Fine said she should have surgery. We want the damn thing out. Rebecca doesn't want to have to go through surgery, but she said if that's what it takes to get rid of and fight this "beast" then that's what she will do. Who knew that this once "little girl afraid of bandaids" would grow up to be such a strong young woman. I think she is handling this better than Julianne, Frank and I are.
No need to keep beating my head against the wall and railing about how unfair this is to have brain cancer happen to such a fine young person. There are plenty of people out there who are battling devastating illnesses with their children. Babies die every day. You only have to look at Caring Bridge to see the kinds of things happening. It makes me sick. There are so many people out there who don't want to live. Who abuse themselves on alcohol or drugs and yet they walk the streets every day, stealing, lying and begging just to get that next bottle of booze or that next fix. And here is a young woman who just wants to go to college and pursue her passion of theater, art and writing. And she is the one who gets brain cancer. Where in the hell is the justice in that! Did I mention how unbelievably surreal it is to talk about my precious Rebecca and cancer in the same breath?
Thankfully Rebecca has remained asymtomatic through all of this. She feels great. She is continuing with her art. SO TALENTED! And enjoys every day. She baffles all of the doctors with how otherwise healthy she is.
We hope and pray that this surgery will take care of the beast and allow her to get back to living life the way she had planned. I always sign off on my journal postings and say to her "Love you always and forever you will be the apple of my eye." So tonight as sad as I feel, I can't help but smile when I think of how proud I am of this precious, beautiful, wonderful girl who will always be the apple of my eye. More later.
I will be praying too.
ReplyDelete