NorahStronger than ever!
Donation protected
Many people have asked us to reinitiate our donation page in efforts to help support Norah and her journey.
As most of you know Norah was diagnosed with glioblastoma brain cancer in August of 2015. After two brain surgeries her tumor was completely removed and our aggressive battle to make sure this beast did not return began. We were told by everyone and I do mean everyone that Norah would maybe live three months and with radiation we may have given her an extra two months. We were told no one survives this tumor. When I asked specifically how many children both the neurooncologist and neurosurgeon had treated and survived, they both looked at each and one of them shook their head and one said maybe 5 (and the surgeon is about 70 years old). So needless to say we knew we had an uphill battle.
Norah has had a truly hellacious year of radiation, chemo, three surgeries for stem cell collections, insertion of a port, and insertion of a g tube. Norah has had countless platelet transfusions and red blood cell transfusions. She goes in for treatment every other week for chemo which has ravaged her body to a point we are unsure if her immune will be able to recover and function normally ever.
All of this said, Norah endures it with a smile and we stand here 15 months later with a CLEAR CLEAN MRI scan. She IS BEATING THE ODDS. She is not a number she is a warrior and kicking this GBM's ass! At her scan last week her neurooncologist said there are less than 1% of children that are 15 months out without tumor recurrence. We feel blessed and thrilled. We have our daughter and she is thriving.
However, we now forge uncharted territory. There is no treatment plan for a child like Norah because there are not enough kids to create a protocol. She can no longer receive chemo because her immune system is so fragile it is not responding and bouncing back as it should. So Dana Farber (the best of the best) has no options for us. They basically have told us we will wait for the tumor to recur and then we can start a treatment to fight the tumor. Well this is of course infuriating because the LAST thing we ever want is for the tumor to recur. We have fought all year to keep this beast away.
So we now are on our own and believe whole heartedly we can fight this beast with naturopathic methods. We actually believe our holistic approach from day 1 is why Norah is beating the odds. But the reason I have been urged to repost is that her vitamin supplements (about 40 a day), essential oils and cannabis oil (taken every night) are extremely expensive and of course not covered by insurance. We knew chemo was not the answer for a GBM tumor because the research shows it does not pass the blood brain barrier for this type tumor. So we began researching and reading and found resounding evidence for all of the holistic methods to kill tumor cells and support and strengthen the immune system. To ensure the best quality, Tim flies to California ever two to three months to buy Norah’s supplements and oil. We do not even think twice and no one would in this situation. We know it is saving her life. It is, however, extremely expensive to maintain her regiment. So many people have asked during the holiday season and hearing our recent clear scan how they can help and celebrate Norah and I have come to realize the best way to support and celebrate Norah is to help us be able to continue to provide the best treatments for Norah.
We have been incredibly humbled over the past year by all the amazing outpouring of love and generosity our friends, family and community has shown to us. We are so appreciative and know Norah's success is a direct result of all of the love, prayers and positive thoughts we have received.
We wish everyone an amazing holiday season!
With much love, The Weeks Family
For more detailed posts from the year feel free to visit Norah's caring bridge page where I wrote about all the posotives and negatives of the year!
https://www.caringbridge.org/visit/norahweeksstrong
As most of you know Norah was diagnosed with glioblastoma brain cancer in August of 2015. After two brain surgeries her tumor was completely removed and our aggressive battle to make sure this beast did not return began. We were told by everyone and I do mean everyone that Norah would maybe live three months and with radiation we may have given her an extra two months. We were told no one survives this tumor. When I asked specifically how many children both the neurooncologist and neurosurgeon had treated and survived, they both looked at each and one of them shook their head and one said maybe 5 (and the surgeon is about 70 years old). So needless to say we knew we had an uphill battle.
Norah has had a truly hellacious year of radiation, chemo, three surgeries for stem cell collections, insertion of a port, and insertion of a g tube. Norah has had countless platelet transfusions and red blood cell transfusions. She goes in for treatment every other week for chemo which has ravaged her body to a point we are unsure if her immune will be able to recover and function normally ever.
All of this said, Norah endures it with a smile and we stand here 15 months later with a CLEAR CLEAN MRI scan. She IS BEATING THE ODDS. She is not a number she is a warrior and kicking this GBM's ass! At her scan last week her neurooncologist said there are less than 1% of children that are 15 months out without tumor recurrence. We feel blessed and thrilled. We have our daughter and she is thriving.
However, we now forge uncharted territory. There is no treatment plan for a child like Norah because there are not enough kids to create a protocol. She can no longer receive chemo because her immune system is so fragile it is not responding and bouncing back as it should. So Dana Farber (the best of the best) has no options for us. They basically have told us we will wait for the tumor to recur and then we can start a treatment to fight the tumor. Well this is of course infuriating because the LAST thing we ever want is for the tumor to recur. We have fought all year to keep this beast away.
So we now are on our own and believe whole heartedly we can fight this beast with naturopathic methods. We actually believe our holistic approach from day 1 is why Norah is beating the odds. But the reason I have been urged to repost is that her vitamin supplements (about 40 a day), essential oils and cannabis oil (taken every night) are extremely expensive and of course not covered by insurance. We knew chemo was not the answer for a GBM tumor because the research shows it does not pass the blood brain barrier for this type tumor. So we began researching and reading and found resounding evidence for all of the holistic methods to kill tumor cells and support and strengthen the immune system. To ensure the best quality, Tim flies to California ever two to three months to buy Norah’s supplements and oil. We do not even think twice and no one would in this situation. We know it is saving her life. It is, however, extremely expensive to maintain her regiment. So many people have asked during the holiday season and hearing our recent clear scan how they can help and celebrate Norah and I have come to realize the best way to support and celebrate Norah is to help us be able to continue to provide the best treatments for Norah.
We have been incredibly humbled over the past year by all the amazing outpouring of love and generosity our friends, family and community has shown to us. We are so appreciative and know Norah's success is a direct result of all of the love, prayers and positive thoughts we have received.
We wish everyone an amazing holiday season!
With much love, The Weeks Family
For more detailed posts from the year feel free to visit Norah's caring bridge page where I wrote about all the posotives and negatives of the year!
https://www.caringbridge.org/visit/norahweeksstrong
Organizer
Lauren Krueger Weeks
Organizer
Lexington, MA
