Kenley's Story
Donation protected
Kenley was diagnosed with Neurofibromatosis Type 1 at 9 months of age. NF1 is a genetic condition that causes tumors to grow along nerve sheaths anywhere inside or outside a person's body. NF1 affects 1 in 3,000 births. Before her diagnosis our family had never heard of this disease. Our lives were about to change. We discovered Kenley had an optic glioma, a type of brain tumor, before the age of 2, through an MRI.
In 2009 our toddler had to have a port placed and she took the chemotherapy drug Carboplatin intravenously for I.5 years. Her port was removed in late 2010 after the completion of this treatment. She was followed through MRI's for changes in the tumor and again in May 2013 it was growing. Our world and hearts were crushed again as our now 1st grader had to have another port placed and had to endure yet another 1.5 years of weekly chemotherapy treatments. The port remained infected throughout this treatment causing her pain and requiring multiple stabs and jabs at her weekly appointments. This port was removed at the end of this treatment course at the end of 2011.
The tumor was watched for progression every 3 months through MRI's and again has shown progression on the March 24, 2016 scan. She is not a candidate for the final infusion chemotherapy available at this time due to having a narrowing of her carotid artery at the base of her brain, as this only available infusion chemo has been shown to cause strokes in people and would be a dangerous choice for her. Also, with her having such a difficult time with her last line placement, another port line would not be optimal. Her neuro-oncologist has prescribed Everolimus, which is an oral chemotherapy drug known to target the tumor cells growing in the optic nerve. It has been shown to shut down a tumor's ability to make proteins. However at this time my insurance company has denied the coverage of this chemotherapy even after our several attempts to acquire coverage. The average cost of this type of medication without insurance is $14,000 per month. (As of late April 15th, we learned my insurance company has accepted one of our appeals after our getting help from several individuals with this process. This will help us greatly with the cost of her medication.)
As if this wasn't enough, her neuro-oncologist that has been her specialist since before the age of two, recently made the move to Florida to head the pediatric neuro-oncology department at a children's cancer hospital. This means that we are now traveling several states away to be followed by him every three months for appointments and MRI's.
We do not know what the future will hold but we do know our family is being upheld in prayers across the country. Many of you have reached out and asked how to donate so we wanted to put together this page for anyone interested. Please note this is specifically set up for Kenley’s medical needs and the continued care she will need. Thank you to those who have already generously donated, prayed, and brought meals. Your love has been deeply felt by the Hendricks’ family.
In 2009 our toddler had to have a port placed and she took the chemotherapy drug Carboplatin intravenously for I.5 years. Her port was removed in late 2010 after the completion of this treatment. She was followed through MRI's for changes in the tumor and again in May 2013 it was growing. Our world and hearts were crushed again as our now 1st grader had to have another port placed and had to endure yet another 1.5 years of weekly chemotherapy treatments. The port remained infected throughout this treatment causing her pain and requiring multiple stabs and jabs at her weekly appointments. This port was removed at the end of this treatment course at the end of 2011.
The tumor was watched for progression every 3 months through MRI's and again has shown progression on the March 24, 2016 scan. She is not a candidate for the final infusion chemotherapy available at this time due to having a narrowing of her carotid artery at the base of her brain, as this only available infusion chemo has been shown to cause strokes in people and would be a dangerous choice for her. Also, with her having such a difficult time with her last line placement, another port line would not be optimal. Her neuro-oncologist has prescribed Everolimus, which is an oral chemotherapy drug known to target the tumor cells growing in the optic nerve. It has been shown to shut down a tumor's ability to make proteins. However at this time my insurance company has denied the coverage of this chemotherapy even after our several attempts to acquire coverage. The average cost of this type of medication without insurance is $14,000 per month. (As of late April 15th, we learned my insurance company has accepted one of our appeals after our getting help from several individuals with this process. This will help us greatly with the cost of her medication.)
As if this wasn't enough, her neuro-oncologist that has been her specialist since before the age of two, recently made the move to Florida to head the pediatric neuro-oncology department at a children's cancer hospital. This means that we are now traveling several states away to be followed by him every three months for appointments and MRI's.
We do not know what the future will hold but we do know our family is being upheld in prayers across the country. Many of you have reached out and asked how to donate so we wanted to put together this page for anyone interested. Please note this is specifically set up for Kenley’s medical needs and the continued care she will need. Thank you to those who have already generously donated, prayed, and brought meals. Your love has been deeply felt by the Hendricks’ family.
Organizer
Erin Oakes Hendricks
Organizer
Pleasant Garden, NC