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Help – 13 Month Old with Congenital Malignant Melanoma
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Help – 13 Month Old with Congenital Malignant Melanoma

› Forums › Pediatric & AYA Melanoma Community › Help – 13 Month Old with Congenital Malignant Melanoma

  • Post
    • September 23, 2014 at 10:03 pm
    tbmorgan
    Participant

      My son TJ was born on August 28, 2013 and diagnosed with congenital malignant melanoma in his first four weeks of life.  He was born with a large mass on the back of his brain that was resected and biopsied at 10 days old by a pediatric nuerosurgeon who saved his life.  At two months the tumor returned and grew to slight larger size and was removed again.  At same time multiple small lesions started appearing on his arms, legs, hands, feet, back.  These were biopsied and confirmed as melanoma.

      My son has been on Temozolomide orally 100 mg a day for 5 days a month for 9 months and Everolimus 2 mg a day every day for 3 months now.

      The tumor in his brain did not show up again on scans but came back at 6 months and is now stable at about the size of a penny.  The skin bumps seem to be just slowly growing but scare me.

      His current treatment is a wait and see approach and it scares me very badly.  I asked my doctor about what we should be doing and he really did not have a long term plan.  I told him that I try to research and look at google once every few weeks and he told me good, because he has a lot of patients and that he was not a melanoma expert and was not able to do that level of research.

      I know the doctor team here is good and saved his life, but I cannot accept that answer, I started searching and found this site so easily, I was surprised they had not recommended this site to me.  Then I saw they had a family conference just two weeks ago and I missed it.  I was so sad.

      TJ is an amazing child, he is strong, loving, and smart.  He has no developmental issues from the surgery, and is walking, dancing, and smiling all the time.

      What do I do?

      I need help.  I need to find the Doctors that can confirm my sons treatment is the best available or recommend something else.  I want a plan that I can live with………

       

    Viewing 11 reply threads
    • Replies
        • September 24, 2014 at 12:56 am
        Gene_S
        Participant

          I thought these two sites might be of interest to you since they talk about Children and Melanoma.

          Please get copies of all your pathology reports and keep a file so if you go see another doctor it will not delay you in getting appointments.  I do strongly suggest you get a Melanoma Specialist and preferrrably a Pediatric Melanoma Specialist if at all possible.

          http://www.sott.net/article/250903-Melanoma-Manifests-Differently-in-Children-Than-in-Adults-Study-Finds

          http://www.chron.com/news/health/article/Pediatric-melanoma-a-growing-occurrence-5424359.php

            • September 24, 2014 at 1:31 am
            Marianne quinn
            Participant

              Please go to a melanoma specialist . TJ is so beautiful and sweet. Don't wait!

              • September 24, 2014 at 1:31 am
              Marianne quinn
              Participant

                Please go to a melanoma specialist . TJ is so beautiful and sweet. Don't wait!

                • September 24, 2014 at 1:31 am
                Marianne quinn
                Participant

                  Please go to a melanoma specialist . TJ is so beautiful and sweet. Don't wait!

                • September 24, 2014 at 12:56 am
                Gene_S
                Participant

                  I thought these two sites might be of interest to you since they talk about Children and Melanoma.

                  Please get copies of all your pathology reports and keep a file so if you go see another doctor it will not delay you in getting appointments.  I do strongly suggest you get a Melanoma Specialist and preferrrably a Pediatric Melanoma Specialist if at all possible.

                  http://www.sott.net/article/250903-Melanoma-Manifests-Differently-in-Children-Than-in-Adults-Study-Finds

                  http://www.chron.com/news/health/article/Pediatric-melanoma-a-growing-occurrence-5424359.php

                  • September 24, 2014 at 12:56 am
                  Gene_S
                  Participant

                    I thought these two sites might be of interest to you since they talk about Children and Melanoma.

                    Please get copies of all your pathology reports and keep a file so if you go see another doctor it will not delay you in getting appointments.  I do strongly suggest you get a Melanoma Specialist and preferrrably a Pediatric Melanoma Specialist if at all possible.

                    http://www.sott.net/article/250903-Melanoma-Manifests-Differently-in-Children-Than-in-Adults-Study-Finds

                    http://www.chron.com/news/health/article/Pediatric-melanoma-a-growing-occurrence-5424359.php

                    • September 24, 2014 at 8:28 am
                    Patina
                    Participant

                      I can't imagine what you and your wife have gone through or what you will face in the future. I can only offer my thoughts and prayers that you find someone who can help your son soon.

                      You have not been working with a Melanoma Specialist and that is really what you needed day one. Melanoma is very tricky and you need someone who not only specialize in it, but someone who has many contacts with whom he or she can consult. – The first Melanoma Specialist you find may not be the right person for your son, but they may know the right person… I dragged my Mom to 4 and it was truly the best decision and helped beyond what I thought was possible when we started down this road. And that was less than a year ago. We were very lucky.

                      I see that you live in Georgia and that there are is Melanoma Center of Excellence(MCOE) in Atlanta and another in Daytona, FL. Check out the qualifications of a MCOE at the link below and the centers listed around the US who have met the qualifications and those may. – The later appear after the MCOE.

                           http://www.melanomahopenetwork.org/Section.asp?SID=2795

                      It does not sound like the doctor you have is the one your son needs, especially if he relies on you for information "because he has too many patients."  – IMHO That was pretty shameful of him to say and he should have referred you long ago to someone who would take a more active roll in you sons treatment.                                                                                                                                                                                        For appointments, I've personally found that the best thing to do is take the information you have and consult more than one Melanoma Specialist.  You should gather every medical record you have for your son: reports, labs, pathology reports, surgical reports, MRI's, CT scans and bring them to any 2nd, 3rd or 4th consult…  – You need to be able to access any report that the doctor would want to see during your appointment. Have this in paper and on a thumb drive along with copies of your son's MRI's and other images.

                      I hope this helps and that you check in here again. There are many people who may be able to give you advice, from what they have experience, and who would love to share information with you.  Good luck and let us know how things go.

                      • September 24, 2014 at 8:28 am
                      Patina
                      Participant

                        I can't imagine what you and your wife have gone through or what you will face in the future. I can only offer my thoughts and prayers that you find someone who can help your son soon.

                        You have not been working with a Melanoma Specialist and that is really what you needed day one. Melanoma is very tricky and you need someone who not only specialize in it, but someone who has many contacts with whom he or she can consult. – The first Melanoma Specialist you find may not be the right person for your son, but they may know the right person… I dragged my Mom to 4 and it was truly the best decision and helped beyond what I thought was possible when we started down this road. And that was less than a year ago. We were very lucky.

                        I see that you live in Georgia and that there are is Melanoma Center of Excellence(MCOE) in Atlanta and another in Daytona, FL. Check out the qualifications of a MCOE at the link below and the centers listed around the US who have met the qualifications and those may. – The later appear after the MCOE.

                             http://www.melanomahopenetwork.org/Section.asp?SID=2795

                        It does not sound like the doctor you have is the one your son needs, especially if he relies on you for information "because he has too many patients."  – IMHO That was pretty shameful of him to say and he should have referred you long ago to someone who would take a more active roll in you sons treatment.                                                                                                                                                                                        For appointments, I've personally found that the best thing to do is take the information you have and consult more than one Melanoma Specialist.  You should gather every medical record you have for your son: reports, labs, pathology reports, surgical reports, MRI's, CT scans and bring them to any 2nd, 3rd or 4th consult…  – You need to be able to access any report that the doctor would want to see during your appointment. Have this in paper and on a thumb drive along with copies of your son's MRI's and other images.

                        I hope this helps and that you check in here again. There are many people who may be able to give you advice, from what they have experience, and who would love to share information with you.  Good luck and let us know how things go.

                        • September 24, 2014 at 8:28 am
                        Patina
                        Participant

                          I can't imagine what you and your wife have gone through or what you will face in the future. I can only offer my thoughts and prayers that you find someone who can help your son soon.

                          You have not been working with a Melanoma Specialist and that is really what you needed day one. Melanoma is very tricky and you need someone who not only specialize in it, but someone who has many contacts with whom he or she can consult. – The first Melanoma Specialist you find may not be the right person for your son, but they may know the right person… I dragged my Mom to 4 and it was truly the best decision and helped beyond what I thought was possible when we started down this road. And that was less than a year ago. We were very lucky.

                          I see that you live in Georgia and that there are is Melanoma Center of Excellence(MCOE) in Atlanta and another in Daytona, FL. Check out the qualifications of a MCOE at the link below and the centers listed around the US who have met the qualifications and those may. – The later appear after the MCOE.

                               http://www.melanomahopenetwork.org/Section.asp?SID=2795

                          It does not sound like the doctor you have is the one your son needs, especially if he relies on you for information "because he has too many patients."  – IMHO That was pretty shameful of him to say and he should have referred you long ago to someone who would take a more active roll in you sons treatment.                                                                                                                                                                                        For appointments, I've personally found that the best thing to do is take the information you have and consult more than one Melanoma Specialist.  You should gather every medical record you have for your son: reports, labs, pathology reports, surgical reports, MRI's, CT scans and bring them to any 2nd, 3rd or 4th consult…  – You need to be able to access any report that the doctor would want to see during your appointment. Have this in paper and on a thumb drive along with copies of your son's MRI's and other images.

                          I hope this helps and that you check in here again. There are many people who may be able to give you advice, from what they have experience, and who would love to share information with you.  Good luck and let us know how things go.

                          • September 24, 2014 at 8:54 pm
                          tbmorgan
                          Participant

                            I have some good news.  I called the MRH and both Catherine and Shelby helped me.  Shelby gave me some background on the conference that I missed.  Most of the families at the conference have children being treated at MD Anderson and St Judes.  I am going to reach out to MD Anderson first as I am hearing great things.

                            In my first blog I did not highlight that we have also taken TJ to the NIH and met with a great cancer doctor there.  There are more research focused but they are also monitoring TJ's case and making recommendations.

                            After reading quite a few posts I am seeing that a lot of people have to go to 2, 3, 4 doctors sometimes to hear all the available options and pick the best one for themselves or their child.

                             

                            Thanks for the support and I will update once I have an appointment at M D Anderson.

                             

                            • September 24, 2014 at 8:54 pm
                            tbmorgan
                            Participant

                              I have some good news.  I called the MRH and both Catherine and Shelby helped me.  Shelby gave me some background on the conference that I missed.  Most of the families at the conference have children being treated at MD Anderson and St Judes.  I am going to reach out to MD Anderson first as I am hearing great things.

                              In my first blog I did not highlight that we have also taken TJ to the NIH and met with a great cancer doctor there.  There are more research focused but they are also monitoring TJ's case and making recommendations.

                              After reading quite a few posts I am seeing that a lot of people have to go to 2, 3, 4 doctors sometimes to hear all the available options and pick the best one for themselves or their child.

                               

                              Thanks for the support and I will update once I have an appointment at M D Anderson.

                               

                              • September 24, 2014 at 8:54 pm
                              tbmorgan
                              Participant

                                I have some good news.  I called the MRH and both Catherine and Shelby helped me.  Shelby gave me some background on the conference that I missed.  Most of the families at the conference have children being treated at MD Anderson and St Judes.  I am going to reach out to MD Anderson first as I am hearing great things.

                                In my first blog I did not highlight that we have also taken TJ to the NIH and met with a great cancer doctor there.  There are more research focused but they are also monitoring TJ's case and making recommendations.

                                After reading quite a few posts I am seeing that a lot of people have to go to 2, 3, 4 doctors sometimes to hear all the available options and pick the best one for themselves or their child.

                                 

                                Thanks for the support and I will update once I have an appointment at M D Anderson.

                                 

                                • September 26, 2014 at 6:39 am
                                JerryfromFauq
                                Participant

                                  TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                                  You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

                                  • September 26, 2014 at 6:39 am
                                  JerryfromFauq
                                  Participant

                                    TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                                    You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

                                    • September 26, 2014 at 6:39 am
                                    JerryfromFauq
                                    Participant

                                      TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                                      You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

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