tbmorgan

Hello,

I am a father of a 2 year old who was born with congenital metastatic melanoma.  He is diagnosed as stage 4, but after his brain tumor was removed his condition has been limited to his skin.

He has 50 to 100 small moles on all his extremities, and the majority look like little pink round moles that would be normal for most people but not for him.  I went to an adult dermatologist when TJ was 2 months old and he assured me that it would not be melanoma.  2 weeks later the biopsy of a mole on his leg came back postiive as melanoma.  At the time he had the brain tumor and only one small mole on the calf of his leg.

I do no mean to scare you, but get the biopsy immediately.  It is better to know than not know and melanoma acts very fast.  My son had his brain tumor partially removed at 10 days old, and the entire thing grew back in less than two months, and we did it all over again.

My view is that knowledge is power and knowing what that mole is as soon as possible is very important.  Please have a biopsy and let us know how it goes.

Respectfully,

Tobin

Hello,

I am a father of a 2 year old who was born with congenital metastatic melanoma.  He is diagnosed as stage 4, but after his brain tumor was removed his condition has been limited to his skin.

He has 50 to 100 small moles on all his extremities, and the majority look like little pink round moles that would be normal for most people but not for him.  I went to an adult dermatologist when TJ was 2 months old and he assured me that it would not be melanoma.  2 weeks later the biopsy of a mole on his leg came back postiive as melanoma.  At the time he had the brain tumor and only one small mole on the calf of his leg.

I do no mean to scare you, but get the biopsy immediately.  It is better to know than not know and melanoma acts very fast.  My son had his brain tumor partially removed at 10 days old, and the entire thing grew back in less than two months, and we did it all over again.

My view is that knowledge is power and knowing what that mole is as soon as possible is very important.  Please have a biopsy and let us know how it goes.

Respectfully,

Tobin

Hello,

I am a father of a 2 year old who was born with congenital metastatic melanoma.  He is diagnosed as stage 4, but after his brain tumor was removed his condition has been limited to his skin.

He has 50 to 100 small moles on all his extremities, and the majority look like little pink round moles that would be normal for most people but not for him.  I went to an adult dermatologist when TJ was 2 months old and he assured me that it would not be melanoma.  2 weeks later the biopsy of a mole on his leg came back postiive as melanoma.  At the time he had the brain tumor and only one small mole on the calf of his leg.

I do no mean to scare you, but get the biopsy immediately.  It is better to know than not know and melanoma acts very fast.  My son had his brain tumor partially removed at 10 days old, and the entire thing grew back in less than two months, and we did it all over again.

My view is that knowledge is power and knowing what that mole is as soon as possible is very important.  Please have a biopsy and let us know how it goes.

Respectfully,

Tobin

Hello,

My son was born August 2013 with a moderate size primary melanoma on the back of his brain.  I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life.  You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.

I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda.  Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.

I also recommend you have the NIH do a full genetic survey of any biopsed tumor.  My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway.  My son did not test postive for any other cancer mutations except for those 2 anomolies.

My son is 2 now and labeled stable but he is not cured.  He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.

Just know that my wife and I are praying for your family and we understand what you are going through.

Tobin

Hello,

My son was born August 2013 with a moderate size primary melanoma on the back of his brain.  I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life.  You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.

I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda.  Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.

I also recommend you have the NIH do a full genetic survey of any biopsed tumor.  My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway.  My son did not test postive for any other cancer mutations except for those 2 anomolies.

My son is 2 now and labeled stable but he is not cured.  He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.

Just know that my wife and I are praying for your family and we understand what you are going through.

Tobin

Hello,

My son was born August 2013 with a moderate size primary melanoma on the back of his brain.  I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life.  You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.

I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda.  Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.

I also recommend you have the NIH do a full genetic survey of any biopsed tumor.  My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway.  My son did not test postive for any other cancer mutations except for those 2 anomolies.

My son is 2 now and labeled stable but he is not cured.  He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.

Just know that my wife and I are praying for your family and we understand what you are going through.

Tobin

Amanda,  tried to use the site to send u a private message but do no think it worked.

emails

tobin [email protected]

amanda.  [email protected]

my wife Amanda, crazy coincidence, said she would love to hear from you

Amanda,  tried to use the site to send u a private message but do no think it worked.

emails

tobin [email protected]

amanda.  [email protected]

my wife Amanda, crazy coincidence, said she would love to hear from you

Amanda,  tried to use the site to send u a private message but do no think it worked.

emails

tobin [email protected]

amanda.  [email protected]

my wife Amanda, crazy coincidence, said she would love to hear from you

Please do not cancel anything.  My son was diagnosed with melanoma within 3 weeks of birth.  He had a brain tumor and many small spots all over his body.  My sister also had two melanoma spots found in her early twenties that were a little more serious than what you are describing.  She had two surgeries at Duke to remove them and has been NED for more than 10 years.  She is 36, married, and has a beautfiul 6 year old girl.

Stay vigilant and live your life.  Our son is now 14 months old and we continue to fight on.  He had the best 1 year old birthday party and we look forward to Trick or Treating and Christmas.  We live day to day.

All the best to you and blessings on your wedding,

Tobin

Please do not cancel anything.  My son was diagnosed with melanoma within 3 weeks of birth.  He had a brain tumor and many small spots all over his body.  My sister also had two melanoma spots found in her early twenties that were a little more serious than what you are describing.  She had two surgeries at Duke to remove them and has been NED for more than 10 years.  She is 36, married, and has a beautfiul 6 year old girl.

Stay vigilant and live your life.  Our son is now 14 months old and we continue to fight on.  He had the best 1 year old birthday party and we look forward to Trick or Treating and Christmas.  We live day to day.

All the best to you and blessings on your wedding,

Tobin

Please do not cancel anything.  My son was diagnosed with melanoma within 3 weeks of birth.  He had a brain tumor and many small spots all over his body.  My sister also had two melanoma spots found in her early twenties that were a little more serious than what you are describing.  She had two surgeries at Duke to remove them and has been NED for more than 10 years.  She is 36, married, and has a beautfiul 6 year old girl.

Stay vigilant and live your life.  Our son is now 14 months old and we continue to fight on.  He had the best 1 year old birthday party and we look forward to Trick or Treating and Christmas.  We live day to day.

All the best to you and blessings on your wedding,

Tobin

I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.

I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.

I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.