Wednesday, November 26, 2008

Learn About Neurofibromatosis

Here's a link to some great Neurofibromatosis sites. This is where I did my own research on NF. You can request a great packet of info from
This is the Washington State NF organization,

Great Interview on CNN!

James and I had quite a bit of fun with our 8 minutes of fame on CNN. It was fun talking about James and all that everyone has done.

I decided to post our donation button again so if anyone wanted to donate they could. Through everyone's generosity we have raised over $240,000. James will need surgery about every 5 years and any extra money will be given to someone with Neurofibromatosis who needs the help just like James did.

Tuesday, November 25, 2008

James & Katie on CNN Live -Wed at 10:20am PST

James and I are excited to be able to talk to CNN on Wednesday about all that's happened. There were so many people from around the world who contributed and have been following the story that we are grateful to show and tell the results via CNN. Kyra Philips will interview us live via satellite. We will be in Seattle talking to her.

So, set the DVR for CNN, the 10am PST show tomorrow, November 26th.

KOMO news story-- James O'Neal "It's perfect."

Watch the story.


Exciting news about Dr. Peter Neligan---

CHICAGO – Peter Neligan, MD, Professor of Surgery, University of Washington, Seattle, was named President of the Plastic Surgery Educational Foundation (PSEF), at Plastic Surgery 2008, the annual scientific assembly of the American Society of Plastic Surgeons (ASPS). The PSEF is the research arm of ASPS, the world’s largest plastic surgery association and foremost authority on cosmetic and reconstructive plastic surgery.

Dr. Neligan will serve as PSEF President for one year. “The PSEF is an amazing source of support for funding and development within the plastic surgery arena,” said Dr. Neligan “and my hope as PSEF President is to further establish it as the main research engine in the field of plastic surgery.”

An ASPS Member Surgeon since 1988, Dr. Neligan currently serves on the ASPS/PSEF Board of Directors and Executive Committee. He also served as a member of the Data Task Force, Publications Committee, and the Maliniac Selection Committee. In addition, he is the Chair of the Research Oversight Committee.

Congratulations to you, Dr. Neligan and thank you for all you have done for our friend with your knowledge.

James' Sisters By His Side Throughout

James just loved having his sisters by his side.

James sister Linda who came from Idaho said of Billie,

"Billie was there from minute one in the hospital and sat by his bedside and supported him through everything. She drove from Auburn sometimes twice a day just to be there for him. While doing this she juggled school, work, family and making sure that I was picked up and returned back to the airport. If there is anyone (besides you) who deserves praise and appreciation for supporting James it is her. Through it all she never thought about herself but only of James and what he might need." -Linda

What a wonderful tribute from an awesome family!

Here are two of James' great friends.

Who is this guy?

The new look of our boy!

James told me the tumor they removed weighed eight pounds! James set a new record at the UW hospital for most units of blood needed-- 28!! We weren't going for any records!

The Sea Gals stopped by the hospital to cheer James on!

Watch KOMO's Reveal of James new Face

Last night KOMO showed the new face of James. Watch it here.

Sunday, November 23, 2008

Sorry for the delay on updates!

I haven't been able to log in to.. anything lately. Don't know why, but now I'm back!

James is taking it easy and doing great because of it. I'm glad he's not rushing back to a busy life. He got his stitches out and the swelling is down even more and everything is healing nicely. He's been up to Safeway several times to say hello to all his friends. Many wonderful people have brought him dinner, too.

He will need another procedure to get the rest of the tumor off. With all the bleeding it caused, it was too risky to take it all in the first surgery.The doctor said that whenever he is feeling 100% then they can schedule it.

I have to say how awesome James' family has been. They have supported him through and through. What a blessing to have such wonderful people in your life.

On Monday night, at 11pm, KOMO news will air their big reveal of James new face. If you miss it, I will put the link on the website for you.

Thursday, November 13, 2008

James Going Home!

James is scheduled to go home today! He is feeling great and looks fantastic. The huge bulk of tumor that USED to hang down from his face is gone! As soon as he woke up from surgery he felt his face and said, "I have a nose!"

Watch his story here.

Tuesday, November 11, 2008

James Out of ICU today!

Happy Day! James has graduated to his own room!

Tomorrow I will take him all the letters and cards you all have sent him. It's an impressive pile! Marlene and I were reading through them the other day and it warmed our hearts to hear the kind words of encouragement and support from everyone. THANKS!


I want to send a big shout-out to Dr. Neligan for the fine work he performed! He and his team did a fantastic job taking care of our boy!

We were so blessed to have his fine expertise in our own back yard.

Check out his website:

Monday, November 10, 2008

The Tube is Out!

The doctors took the breathing tube out this morning, and James was out of bed and in a chair! He can speak well and has no pain. The doctor says he is "doing awesome". He may get out of the ICU on Wednesday.

Thanks for all your kind comments and notes to him. They will really boost him up.

Sunday, November 9, 2008

James' sister visits from Idaho

Today James sister from Idaho arrived. He brightened substantially to have her there. She should be able to stick around for a few days which is sure to keep his spirits high.

The doctors are going to try to take the tube out of his mouth tomorrow morning. This will be fantastic as James should be able to check out of the ICU then.

Saturday, November 8, 2008

James Recovering in ICU.

James is doing great, though the swelling in his face is substantial. It has subsided some, but the doctors don't want to take out his tubes until it has decreased more.

He spent some time this afternoon watching the Husky game with a close friend. There is a sticky note on the TV to be sure the Seahawk game is turned on at the right time tomorrow. Oh, I hope no one forgets!

His sense of humor is intact even though he can't speak and I think he'd tackle someone to take the tube out of his mouth if he could get up. Go James!

Friday, November 7, 2008

James doing well!

Thank you for all the kind words and prayers for James. He is doing well. He is in the ICU and being kept under tonight. He has a lot of swelling and they want that to go down before they move him to a room. His dad and other sister came to visit him today too.

I hear his nurse is "just a dear", so he is definitely in good hands. He isn't receiving any visitors besides family while in the ICU since he can't talk with the tube in his mouth, but hopefully that will be out in a day or so.

I thought Michelle Esteban did such a fantastic job on the story Thursday night. It was so touching and I loved having a little birds eye view into the OR. I am absolutely thrilled that James did so well in the surgery and is on his road to recovery.

This is a monumental day thanks to ALL OF YOU! I could not do it alone, a few of us couldn't do it, it required a community of friends near and far to do it. Thank you for bringing this day to James!

Thursday, November 6, 2008

James out of Surgery!

James came through great and Dr. Neligan finished quicker than anticipated. James did have more bleeding than expected and required 26 units of O-Positive Blood. I know the blood bank would be appreciative of any donations of O-Positive blood to restock their supply.

James may be in the ICU until Saturday, but he looks "beautiful" says his friend Ellen who will be by his side all night. The doctor showed her photos of him before wrapping his face up, and Ellen couldn't believe how fantastic he looked. She says the swelling is setting in now, but he's going to look wonderful.

The surgeon believes minor procedures every five years should keep up with the slow, anticipated growth of the tumor.

Watch KOMO's story as they were inside the OR with James.
Read KOMO's story here.

Dr Neligan is finishing up now.

The news from the OR is that Dr Neligan is starting to close him up now, which may take an hour. He is stable and doing well. He responded well to the anesthesia and should be in the recovery room soon.

7:45am -- James in Surgery!!

James arrived at UW Medical Center at 4:30 am this morning. He was in good spirits and looking forward to the results the day would bring. His sister was there with him as well as a few close friends. The surgical staff took him back to the OR at 7:45am. They anticipated a 9 hour surgery. KOMO news was there to capture the day and you can watch their story tonight at 11pm.