Sarah's Progress in her Battle with Hemangiomas: Walked half the city

Sunday, April 12, 2009

Walked half the city

Today we walked all over the place. We Started from the apartment and went south to a parade that NY had on 5th avenue. After seeing what was going on we went to the battleship Intrepid which is a retired ship that has been restored and retrofitted to let you go in the top deck, flight deck and the hanger area. Just a little fun fact from pamplet it took 7000 gallons of paint to re-paint the ship.

More importantly then the sites that we saw today we remembered the reason for Easter and the ultimate sacrifice our Lord Jesus gave to die for our sins. When I think of Easter I think of sacrifice and love. Maybe these feelings come up because of our own path in life, maybe I am just relating this back to our life but felt compelled to share this.

In preperation for Easter Kim and Sarah sat down last night and colored some Easter eggs. Sarah really enjoyed this until it was time to let the eggs dry. She got so mad she sat down on her butt and then threw herself forward onto the ground. Big time temper tantrum, in her defense we started the painting process very close to bedtime.

Hope this post finds you well! Happy Easter

God is good

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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