May trip to New York

We just got back from our 5th trip to NY. We are all a little tired but the good news is everything went well. The Laser surgery went good and Dr. Levitin told us that we would be coming back every four weeks for at least two more surgeries. The good news is that he also told us the rapid growth phase of the hemangioma is for the most part over. And that hopefully by late summer or early fall they can start taking some of the tumor away. This news was good but it also made us very uneasy. Mainly because this is a new step that we are unfamiliar with and the unknown always scares us. The future surgeries themselves take on a whole new aspect to Sarah's treatment and will require our stays to be longer. But we are strong and will get through this. Please pray for our family that we will stay strong and can meet these tasks head on.

The picture of Sarah sitting by herself was taken the day before surgery in central park. The picture of Sarah on mommy's shoulders was after surgery that same day. Surgery was at 7:30 that morning so after a nap and some lunch we decided to take Sarah to the Central Park Zoo. As you can tell she was having fun!

Thank You to All

I wanted to tell everyone thank you for all of the support we have received thru prayers and the fund raisers that have been put on for Sarah. There are so many people who have helped I could not begin to try naming all of them. When you are in a situation like the one we are in you definitely know who the folks are that really care. I hope that everyone knows how much my family and I appreciate the help. Please continue to pray that Sarah will get well and that the tumors will quit growing. You never know what life will bring your way but it's a comfort to know what others are willing to do for you.

Sincerely,

Chuck Porter

April trip

Sorry for the late update.Daddy forgot to pack the camera before the trip. Sarah's laser surgery went good on Wednesday. The doctor's have three different kinds of laser's one for each layer of the skin. They used two of these laser's on Wednesday so the treatment was a bit more intense. The hemangioma is not growing at a rapid rate right now so they decided to take more of the tumor away then they have in the past to help clear the way so to speak. Sarah was in more pain then usually anticipated and had to have some medicine for the pain instead of her usual tylenol. But besides that the surgery went well.The picture of Sarah taking a bath is two days before surgery and the other picture is five days after surgery.

Done with Chemo

Just wanted everyone to know that Sarah had her last of four chemo treatments yesterday and everthing went well. She has not had any visible growth this month which is good news. We will have two more scheduled treatments one in April and one in May. After that the doctors are going to reevaluate the frequency of treatments, which hopefully means that we won't have to go to New York as often.
I mentioned on the last blog that the doctors up in New York told us that we are staying ahead of the growth and that hopefully there won't be many more rapid growth sperts.
Sarah is doing well and she has two little teeth right next to each other on the bottom of her mouth. She also discovered her ear yesterday and won't let go of it.
Thank you to everyone who has prayed for Sarah and please continue too.

March Trip to New York

Just wanted everyone to know that Sarah's trip to NY went well. Dr. Levitin also told us that the intervention we have done (laser,steroids&chemo)is working great and that he feels we are staying ahead of the game. Sarah has two more chemo treatments and that should be it for awhile. These are pictures of mom and Sarah before surgery in the waiting room and then Sarah looking at me saying "take me home" after surgery.Please continue to pray for Sarah and us to stay strong and for her tumors to not grow anymore.

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Upcoming Events For Sarah

There are several events in the near future that are going to go towards helping pay for Sarah's Medical bills and the high costs of taking Sarah to Manhattan, New York for her Laser Surgeries.
These are the events coming up:

On April 5 there will be a breakfast put on for Sarah at Midway Baptist Church from 6a.m. until 10a.m. There are several churches helping put the event on including New Hope and Utah.

On April 5 there will also be a dinner put on for Sarah by Hemby Bridge Fire Dept. at Hemby Bridge Fire Dept. at 6p.m. for further information please contact Windi Henderson at 704-882-2100. Tickets are going to be sold until March 28.

On April 12 there will be a Poker Run held by Iron Horse Motorcycles and Iron Horse Road Riders at Iron Horse Motorcycles in Monroe,NC. For more details please contact:
Linda Coats at 704-233-9156

Latest News

Kim and I have noticed since the latest MRI a significant amount of growth on Sarah's face.We decided to see her Hematologist Dr. Mogul about it on Monday. After talking with Dr. Mogul and conversing with Dr. Levitin(NY doctor) they decided that going back on steroids was not an option at this point and that a low dosage of chemotherapy treatment from a drug named Vincristine would be a safer step to help control the growth of Sarah's tumors. Sarah got the dose a few days ago and has yet to be 100% so far. She is not as playful and happy as usual but hopefully we will see some good days in the near future.

Next week will be very busy for Sarah, she has her second chemo treatment on Monday and then its back to New York City on Tuesday for her third laser treatment. Hopefully everything will go well and I can update everyone very soon. Please pray for Sarah's treatments to go well and to help her and us stay strong.

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.

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.

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.

Sarah's Hemangiomas - 1st Laser Surgery by Dr. Waner

Note the Hemangiomas ulcerations that had developed in such a short time before her surgery, the largest under her lower lip.

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Sarah's Laser Surgery went very well. The excitement for us deepened when we first saw her after the surgery and she started giving us all a ton of her happy smiles. While she was under the anesthesia they ran a laparoscope TV camera down her throat and we all were relieved that they found no Hemangiomas inside the wind pipe. Sarah goes back to the Vascular Birthmark Institute tomorrow so that the doctors can check her out before we head home. We are also going to visit the doctor's dormitory that they offer their patients - we have been told that they are very nice at a very reasonable price, just down the street from the Vascular Birthmark Institute.

Doctors (right to left) - The famous Dr. Waner, Dr. Thompson, Dr. Levitin, Vascular Birthmark Institute.

Slide show of our trip to New York

Our Big Decision - How best to Battle Hemangiomas

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Sarah’s local dermatologists wanted to do Laser Surgery here in North Carolina. We then talked to Sarah’s hematologist who gave us his opinion because he had worked with our dermatologists for a long time. He advised that we should strongly consider going to New York and see Dr. Waner. We had heard that Dr. Waner and his staff are known to be the best in the country, perfecting the laser application and inventing new technology just for children with Hemangiomas.

Sarah just a few hours old

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Sarah was diagnosed at birth as having a port wine stain on her precious face. At 2 and 1/2 weeks old we found out that she has Hemangiomas and that she needed to be put on steroids to stop the possible rapid growth. At close to three months of age we discovered the famous Dr. Waner and his Vascular Birthmark Institute. From the first phone call Dr. Waner answered our questions personally and gave us his email address and phone number.

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