Sarah's Progress in her Battle with Hemangiomas: June trip went well!

Friday, June 13, 2008

June trip went well!

We just got back from our sixth trip to NY. We had a new experience going to Roosevelt Hospital instead of our usual Beth Israel Hospital trip. We were across the street from our doctor's office and the hospital this time which cut down on cab fares to the hospital, hopefully we can schedule our visits like that again. Besides a malfunction of our stroller at the airport in Charlotte at the start of our trip the rest of the trip went well. Laser surgery went well. Dr. Levitin told us that after the July laser surgery they will start removing some of the tumor on Sarah's face and will also start fixing the scaring on her right cheek. This is all good news for our family even though it is also a new obstacle. Thank you for praying for Sarah and our family and please continue too. The top two pictures are of Sarah with mom and dad before surgery in the pre-operations area. The last picture is of Sarah back at the apartment after a good nap. For having as much done to her that morning as she did, she is in good spirits.

2 comments:

Anonymous said...: Hello, im Eugenia, from Argentina. I comment at the post of May.
Im so interested on Sarah's evolution.

Im happy to see that things are going fine.

My best wishes for Sarah and you.

Write me at:
eugeniamagnano@gmail.com
euge_magnano@hotmail.com

Sincerely
Eugenia

PS: Sorry for my terrible English!; June 14, 2008 at 2:35 PM
DJFreed said...: Hi Guys,

Hope yesterday and today went well. If you still have my number and we can help you when you are in New York with accommodation or just coming for dinner please call me as we would love to keep in touch. Corey at Dr. Waners office has my cell and I asked him to pass it on to you.

Wishing you all well

Debs, David and Ayelet; July 23, 2008 at 2:56 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