We have not posted for sometime. I wanted to share out wonderful news with you all.
My daughter Brooke was born with KHE down her throat and accross her face, after 3 1/2 year of steriod and chemo treatment I am happy to say we are finished.
Brooke was finally taken of steriod last month she now has no sign of Hemangiomas and has been discharged from the children hospital. After nearly 4 years I can finally say I have a little girl with no medical complications.
To all you parents whose children are still receving treatment, there is a big light at the end of the tunnel and yes I know how hard the road can be but it is worth every little step you make when you see your child smiling at you because her doctor has told her that there are no more needles.
SOOO happy to hear the success of the treatments. I sent you a message but I'm hoping this finds you, incase that doesn't. My son is only 7 weeks old and starting the very long journey your daughter has endured. You see, he has KHE on his face and neck. It started to effect his breathing and eating at one point when the tumor was trapping so many platelets that his dropped down to 6. He was started on Vincristine and steroids (they are now slowly taking him off the steroids) and it has brought it back to a state where he can eat and breath normally. We were in the hospital for the last three weeks straight and we were just able to come home. We aren't sure if this will ever get smaller or if we have just stopped it from growing and eating his platelets. Your success just makes me so hopeful and to get to speak with you and share pictures would mean the world to me. Thanks so much for your time and God bless your daughter. Enjoy being free of this struggle.
An international charitable
organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment,
provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance
for individuals with birthmarks.
Here you will find information and resources for patients and families affected by hemangioma, port wine stain,
arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.