Sarah's Progress in her Battle with Hemangiomas: Upcoming Trip

Thursday, January 1, 2009

Upcoming Trip

Just wanted everyone to know that we have another trip coming up in March. We don't know exactly what will be done except that they want to start working on her right cheek area. We wanted to update everyone and wish everyone a happy new year.

God is Good

8 comments:

The Hines Family said...: What a beautiful family picture! Happy New Year! :-); January 1, 2009 at 10:24 PM
sgribb02 said...: Psalm 52:9
I will praise you forever for what you have done; in your name I will hope, for your name is good. I will praise you in the presence of your saints.

You Guys put a smile on my face.

In Christ,
Steve G; January 4, 2009 at 12:13 AM
nycfreed said...: make sure you let us know when you are coming, so we are ready for you guys!!!!; January 5, 2009 at 8:25 PM
Anonymous said...: I am very impressed by your battle. Good luck and a happy new year; January 11, 2009 at 10:39 AM
Anonymous said...: Hello & well wishes to you all from Kansas City! Just found you on line...our son also was blessed to have been treated by Dr's Waner & Levitin. We are delighted to partner with a new foundation started in Dr. Waner's honor (wanercvaf.org), in hopes that other children are able to receive the same gift of his miracle-working hands. Blessings to you all, as you continue in this journey...Sarah is a beautiful little girl & I know you are equally thankful to have found Dr. Waner. -Jayna French (evanandjaynafrench@mac.com); January 18, 2009 at 11:58 PM
Anonymous said...: May God Bless you on your upcoming trip, I pray all goes well. Such a beautiful baby girl.

Keep the Faith!; January 28, 2009 at 2:28 PM
Emilee, Marcus, and Savannah said...: Hello there. My name is Emilee and my 3 month old baby has a hemangioma. Her's is a bearded one, and pretty much is just in the area's of a beard. I was wondering if any doctors have ever talked to you about Propranolol. They just put my daughter on it as well as steriods for the H. They say that the propranolol stops the growing. So far its worked but its turned my sweet chill baby into a colic baby. I just bought some colic calm and we will have to wait and see how that works. Anyways its just nice to talk to another mom who has gone through it. My email is emileebrannen05@yahoo.com if you would like to keep in touch or learn more about our situation with Savannah.; February 2, 2009 at 1:42 AM
Heather T said...: Beautiful picture....thinking of you all!; April 5, 2009 at 10:54 PM

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SARAH's BATTLE WITH HEMANGIOMAS

We started this blog to keep our family and friends posted on our little Sarah's progress battling her Hemangiomas. Sarah was diagnosed at birth as having a port wine stain on her precious face. Port wine stains are just facial birthmarks, which the dermatologist told us would take ten years to see any kind of change or thickness on the skin.
After just a couple of weeks from seeing her dermatologist Kim noticed that the port wine stain had started to get some thickness to it and the right side of her face was beginning to get a knot underneath the skin. After a whirlwind of seeing three doctors in one day which included her primary phyisician, dermatologist, and eye doctor. We then got in contact with a different dermatologist Dr. Freeman. He confirmed to us that Sarah did infact have Hemangiomas.
Dr. Freeman put us in contact with a hematologist (a specialist with medicine and chemotherapy) his name is Dr. Mogul.
Dr. Mogul started Sarah on a steroid (prednisolone) to slow down the growth of the tumors.
Hemangioma is a Benign Tumor that grows at a rapid pace for the first twelve to fifteen months of a child’s life. After the rapid growth phase it takes approximately five to nine years for the tumor to go away totally. Hemangiomas is also predominately found in females. There is nothing the doctor’s or anyone for that matter know of that causes hemangiomas and nothing the mother or father can do to prevent them from happening.
None of the doctor’s have been able to tell us why hemangiomas happen or why they stop growing after this first year, but we do know that this type of tumor if not in a critical area can be a fairly easy thing to deal with if it happens to you. Dr. Mogul immediately put Sarah on a steroid to slow down the growth of the tumor. In mid November ourselves and the doctor’s decided to get an MRI done on Sarah’s head, neck, and torso to check the rest of her body for hemangiomas. They recommend this if you have two or more visible tumors because you run a higher risk of having these type of tumors in other parts of the body. After getting this information back to us the doctor’s found two more tumors that we were not aware of. One is behind her left eye and the other is near the left side of Sarah’s airway. It was made very clear to us that the one next to her airway was not close enough to be a threat at the time but would have to be monitored. On December 4th, approximately two weeks after the first MRI, we were encouraged to have a second MRI done for two reasons. One was to scan just the area of the neck and head to get a more detailed look at what we were dealing with the second was to give us a visual comparison from two weeks prior on the advancement of the tumors near her airway and left eye. After review from the doctor’s to our surprise the two tumors in question had not grown at all - this was good news.
My wife and I want the best treatment for Sarah and these two new tumors were just fuel to the fire on finding out more of what we could do. When Sarah was close to three months of age my wife discovered the famous Dr. Waner at the Vascular Birthmark Institute of New York. From the start Dr. Waner answered our inquiry personally and gave us his email address and phone number. This is our favorite site that for us accurately paints the picture of Dr. Waner - his Children’s Miracle Achievement Award. Be sure to visit the Waner Children's Vascular Anomaly Foundation site and Facebook Page.

After our first trip to New York to see him Grandpa Porter asked Dr. Waner "What can we do to tell others about your wonderful life's dedication to children" and he said "Start a Blog." Therefore this blog is dedicated to couples searching for help for their child with Hemangiomas!

Be sure to visit Linda Rozell-Shannon and learn about The Founder of VBF as she tells Her Personal Story. Also, Sarah's story was recently posted on the VBF site along with other family stories. A very touching story was posted May 28, 2008, on Fox News about a "Once-Disfigured Girl Attends Prom After 18 Surgeries", after being helped by Dr. Waner. You can also read and make comments at a site link .

Blogs are new to me! We are extremely grateful for the tremendous help received from Amanda at Blogger Buster. If you are interested in Blogging you will be glad that you visited her site below.

Grandpa's Family Blog

Sarah's Progress in her Battle with Hemangiomas

Thursday, January 1, 2009

Upcoming Trip

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