Sarah's Progress in her Battle with Hemangiomas: February 2008

Tuesday, February 26, 2008

Update on Sarah

As of February 11th Sarah is completely off of the steroids that she began at two and a half weeks old. Sarah's doctors have decided now that she is getting laser treatment once a month that the steroid use is no longer a necessity and the side effects are not worth keeping her on them.

After two weeks of being off the steroids we noticed the hemangiomas had started growing on the inside of her lip. We immediately took her to the hematologist Dr. Mogul. After talking with Dr. Mogul we decided it was time for another MRI because of the new growth on the lip we were concerned about the growth on the inside near her airway and behind her eye revealed on previous MRIs.

After getting the results of the MRI the good news is that there is no new growth anywhere but her mouth and since there is no obstruction with her eating or breathing chemotherapy is not required at this time.

Sarah is very happy to be off of the steroids,she is playing more during the day and interacting with us more. Plus she is now sleeping through the night. She has also been working on her first tooth, expected to arrive any day.

Monday, February 18, 2008

2nd trip to New York

The image of Sarah with the John Deere hat on was taken a few days before 2nd surgery. The other picture was taken a day after the 2nd surgery.If you notice in the first surgery picture the ulceration under her lip is pretty bad but in the John deere picture it has cleared up fairly well. Now she has an ulceration on her right cheek. The 2nd laser surgery hopefully will take care of that one.

Before and After Sarah's first laser surgery

The picture on bottom is of sarah before surgery. The picture on the top is after the first laser surgery.

Thursday, February 7, 2008

The Three of Us Right after Laser Surgery...

Sarah's first bottle after 8 hours of no food, so that she wouldn't get sick during the surgery.

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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