Rare form of lymphatic malformatiions can anyone relate - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

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Old 06-13-2008, 03:00 PM
LilyGrace23 LilyGrace23 is offline
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Join Date: Jun 2008
Location: New Hampshire
Posts: 8
Default Rare form of lymphatic malformatiions can anyone relate

I am new to this site so If anyone can give some support or if anyone has been through something similar please let me know!!!! until this website I thought I was alone with this. It has been a long 8 years with no answers and no support. thanks to all who read this!!!!

I have a very beautiful son named Kaden who is 8 and was diagnosed with lymphatic malformations at 2. He was 5 weeks premature and he had pneumonia and his left lung collapsed shortly after birth. The doctors did an ultrasound of his abdomen and saw 2 tumors in his spleen, they seemed confused by this but blew it off. Shortly after I got him home he started getting pneumonias every 4-6 weeks, he was having a hard time gaining weight and he threw up this thick white mucus all the time. the doctors looked at me like I was crazy but I knew there was something wrong. The week before Kaden's first birthday they found a huge tumor behind his left lung, they did an MRI and told us he had cancer... He went in for surgery and they removed about 6 pieces of this tumor laproscopically and did bone marrow testing. a few hours later the surgeon came in and said it was a miracle it wasn't cancer after all but a lymphatic tumor. What does this mean? so for the next year Kaden didn't get any better and the pneumonia's were still happening and he was just so sick all the time. Finally a nurse practitioner, thank God for her, sent us to a specialist who sent us to Boston Children's. His symptoms mimicked Cystic Fibrosis, so we did genetic testing for that and it was negative, he had some other tests and finally they took his case through the vascular anomily (not sure about the spelling) clinic at boston children's. there he was diagnosed with lymphatic malformations, I don't even know what form of it he has. they told me it was the rarest case they had seen because it was all internal, tumors through out his rib bones too many to count. he has 2 tumors in his spleen and 1 huge one behind his left lung. They ordered a Cat scan last week to compare it to the ones he had 5 years ago to see if there were any changes. We got a phone call monday and the radiologist report says it looks like there are 2 new lymphangiomas in his esophogus.... so I'm trying not to worry to much until our appt. at boston children's next friday..... God bless to all!

Last edited by LilyGrace23 : 06-16-2008 at 02:23 PM.
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