How do I even start?
I write this blog while thinking of all the very, very special people I have met because of brain cancer. Charlene McDaniels, KathiAnn Crocker, Matilda, a 10 yr. old little girl battling ependymoma which is a tumor inside the spinal fluid. And all the survivors and caregivers I met at NBTS Head to the Hill this year.
It's been almost 5 years since I have been able to post. I'm just this year finding myself coming out the of grief fog that has hung over me since Rebecca's and Mother's deaths. I've been through all the crying, screaming, rage, depression and despair so my journey through grief has been extremely hard. While I can smile and pretend that I'm okay, not a day goes by that I don't wish to see my girl and Mother.
Rebecca was the apple of my eye. The center of our whole world. The best of the best. A person completely without ego who never caused a minute of heartache for us. I said when she was born that it was a new kind of love altogether, one which I had never experienced and boy was I right. I loved and adored her and she knew it. And I know how much she loved me, too. In that I am very fortunate.
For May 2018 I was able to advocate for funding for research and treatment for brain cancer by going to the National Brain Tumor Society's "Head to the Hill" advocacy event in Washington DC. I like to think we made a difference because shortly after we returned home the House pass the S.T.A.R Childhood Cancer Act which was one of the initiates for which we were advocating.
On our team I chose to advocate for NIH and NCI. Rebecca was a direct recipient of the good work that has been done in research and treatment at NIH, something for which we will forever be grateful. And MUSC played an important role in her battle. It was there that she received original chemo and radiation in 2010 and infusions in 2013. She was also able to receive her medicines through MUSC which made life a lot easier by not having to travel to NIH. We simply cannot allow our government to reduce the funding NIH and NCI received. Those institutions are vital to finding a cure and/or better treatment for brain tumors.
As a grandmother, I am brokenhearted that I will not be able to see her accomplish the wonderful things that were on the horizon for her. But more importantly I won't get to see Julianne be a grandmother and she won't see her daughter get married and have a family. So while Rebecca was a courageous fighter, she once told me she was not afraid to die but she was worried about all the people that would be left behind that loved her so much.
I have watched my child grown up, fall in love, get married, have a child, get divorced, put herself through school and be ready to embark on being a "college mom". And then life turned on a dime and it felt like our world fell apart. And the worst of the worst was watching her care for her beautiful daughter day in and day out when nothing in any arsenal could help Rebecca any further. She was brave every day, she was there for Rebecca 24/7 when she needed to be, she was at every appointment, whether here, Vermont or Bethesda and even went through total financial devastation when her employer forced her to cause her own termination by denying her any extra days off to be with Rebecca in Bethesda at NIH for Rebecca's second brain surgery. She somehow got through taking care of her child while having Mother come live with us when she could no longer be cared for by my brother. My child is an amazing woman. She is making a life for herself and her corgi girl, Blossom, and I'm so proud of her. There are no words to describe the depth of the love and respect I have for her.
#BTAM is the hashtag for May being Brain Tumor Awareness Month. Go to www.braintumor.org and see the great stuff NBTS is doing. And thank you to all who donated to my #Head2Hill2018 campaign.
And now comes June which is Alzheimer's Awareness Month. Yep, I'll be on my soapbox about that, too!
It's been almost 5 years since I have been able to post. I'm just this year finding myself coming out the of grief fog that has hung over me since Rebecca's and Mother's deaths. I've been through all the crying, screaming, rage, depression and despair so my journey through grief has been extremely hard. While I can smile and pretend that I'm okay, not a day goes by that I don't wish to see my girl and Mother.
Rebecca was the apple of my eye. The center of our whole world. The best of the best. A person completely without ego who never caused a minute of heartache for us. I said when she was born that it was a new kind of love altogether, one which I had never experienced and boy was I right. I loved and adored her and she knew it. And I know how much she loved me, too. In that I am very fortunate.
For May 2018 I was able to advocate for funding for research and treatment for brain cancer by going to the National Brain Tumor Society's "Head to the Hill" advocacy event in Washington DC. I like to think we made a difference because shortly after we returned home the House pass the S.T.A.R Childhood Cancer Act which was one of the initiates for which we were advocating.
On our team I chose to advocate for NIH and NCI. Rebecca was a direct recipient of the good work that has been done in research and treatment at NIH, something for which we will forever be grateful. And MUSC played an important role in her battle. It was there that she received original chemo and radiation in 2010 and infusions in 2013. She was also able to receive her medicines through MUSC which made life a lot easier by not having to travel to NIH. We simply cannot allow our government to reduce the funding NIH and NCI received. Those institutions are vital to finding a cure and/or better treatment for brain tumors.
As a grandmother, I am brokenhearted that I will not be able to see her accomplish the wonderful things that were on the horizon for her. But more importantly I won't get to see Julianne be a grandmother and she won't see her daughter get married and have a family. So while Rebecca was a courageous fighter, she once told me she was not afraid to die but she was worried about all the people that would be left behind that loved her so much.
I have watched my child grown up, fall in love, get married, have a child, get divorced, put herself through school and be ready to embark on being a "college mom". And then life turned on a dime and it felt like our world fell apart. And the worst of the worst was watching her care for her beautiful daughter day in and day out when nothing in any arsenal could help Rebecca any further. She was brave every day, she was there for Rebecca 24/7 when she needed to be, she was at every appointment, whether here, Vermont or Bethesda and even went through total financial devastation when her employer forced her to cause her own termination by denying her any extra days off to be with Rebecca in Bethesda at NIH for Rebecca's second brain surgery. She somehow got through taking care of her child while having Mother come live with us when she could no longer be cared for by my brother. My child is an amazing woman. She is making a life for herself and her corgi girl, Blossom, and I'm so proud of her. There are no words to describe the depth of the love and respect I have for her.
#BTAM is the hashtag for May being Brain Tumor Awareness Month. Go to www.braintumor.org and see the great stuff NBTS is doing. And thank you to all who donated to my #Head2Hill2018 campaign.
And now comes June which is Alzheimer's Awareness Month. Yep, I'll be on my soapbox about that, too!
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