:-[ I know this is not the right place to post this but for the life of me I just cannot find a board with something similar for me to post. If you have any ideas please let me know! Otherwise would it be OK for me to post here for some much needed support?
OK let me share my story with you.... It's a little long one so stay with me. I have a 6 year old little girl (Megan) who was born with something on the back of her neck. I had taken her to 3 pediatricians and they all told me that what she has was called a Hemangioma and that it would go away... even though Hemangiomas are usually red and hers were clear. I thought well..... 3 DR's looked at it so they must be right??? Right??? Nope! When Meg was 4 the blister like things on the back of her neck started growing and a few of them turned black and hard so I made an appointment to see a Dermatologist. I was shocked at what he would tell me. Meg has something called Lymphangioma Circumscriptum. LC is a genetic defect that is very rare and is a defect with her lymph node. The little vesicles were filled with lymph fluid. He told me to go see a pediatric Dermatologist and since there is only one in AZ we had to drive from PHX to Tucson to see him. A few weeks later we were in his office where he didn't have much info to share with us. He told us that LC was not life threatening but that she would have to have surgery to have it removed because the roots were very deep....anything other than that and it would just grow back and that they are usually not cancerous. He could not tell me how it would grow or when it would grow or even how big they would get because since it is so rare not much is really known about it. He told us to go home and come back in a year and he would again look at it. About 6 months went by and that is when we saw them start to grow and change and become black and hard. So I again called her Dermatologist who told me to come in for something called Grand Rounds where 10 Dr's looked at her and would collaborate on what to do. After the DR's talked it was determined that she needed to see a plastic surgeon to have it removed and gave me the names of a few. When we returned home from Tucson I started making phone calls to find a DR who had actually delt with this kind of tumor before and only one on the list had. I called his office and made an appointment in 8 weeks. Because he is a high profile DR and that is how far they were scheduling out. We took her in to see DR Beals and he agreed it needed to be removed and made an appointment for the surgery in 3 months. Last May my baby had surgery to have it removed and now has a huge 6" scare on the back of her neck and pathology came back fine. It has now been 8 months and her tumor is starting to grow again. Meg has a few little vesicles and seems to have more every day. They are growing back in the same place as before and right in the scare from her surgery. In fact she has one scare that is like a line that has about 8 little vesicles forming on it and it is red and puffy. I called DR Beals office to have her seen and was given an appointment of Feb 12th so now we play the waiting game again. When I made the appointment and talked to DR Beals nurse she said "are you sure it's the tumor and not just scare tissue? Because they usually don't grow back" I said yes IM sure they are the same clear vesicles she was born with and they are growing every day. I asked, could he not have gone deep enough during her surgery? The nurse said that yes or that it might not have been well defined enough for him to get it all. So now we play the waiting game GRRRR. IM sure she will have to have more surgery and my heart just breaks for my beautiful little girl having to go through that. But, it's the only way.
Anyway just saying hello and asking for some much needed support.