Wednesday, July 23, 2008

How to donate to Nevus Outreach (and help find a cure for NCM)

Austin is turning 1 year old on August 24! For this occasion, we are trying to raise as much money as possible to find a cure for neurocutaneous melanocytosis. Although this is a very rare condition, there is an organization that is committed to providing support for people with NCM and large nevi, promoting awareness and finding a cure. Nevus Outreach, Inc. has been a great source of support and information to us in the past months and we are committed to this cause. If you would like to learn more, please visit the website at If you would like to make a donation, go to and click "donate" in the upper right hand corner. Please indicate that your donation is in honor of Austin's birthday so Nevus Outreach can total up the amount we have raised as a group. If you feel more comfortable donating by check, please use the donation form on the back of the Nevus Outreach brochure. (If you need one please let me know). Additionally, after his birthday everyone who makes a donation will be able to access a special "after party" area of the website that will contain pictures, video and other content from the birthday party, plus update you on the total amount we have raised as a group.

Friday, July 18, 2008

Pictures from the conference

Austin thought the hotel was pretty awesome

Aidan & Liam dancing at the anniversary party

Family picture

Aidan & Austin at dinner

Thursday, July 17, 2008

Austin's MRI

Just to update everyone, Austin had an MRI on Tuesday July 15 and we went to see Dr. Tomita, his neurosurgeon, at Children's Memorial yesterday to get the results. The news is good. There are no changes since February's MRI. Also a cyst in the brain stem area that we have been watching is getting smaller. The only better news would have been "all the spots are gone" so we are pretty happy!

Wednesday, July 16, 2008

We're back!

We had a very emotional and exhausting week but we are now back from the Nevus Outreach conference in Dallas. We spent three days hearing medical experts speak on congenital nevi (birthmarks like Austin's) and meeting so many wonderful people affected by this condition. We met adults with large birthmarks as well as babies like Austin. Time and again we heard the stories of babies being born with large birthmarks and parents being told that they would not live to be 2 years old, even babies who had no evidence of central nervous system involvement (neurocutaneous melanocytosis- NCM-unfortunately this is what Austin has). Although we did not hear the good news we were hoping for, such as a new treatment or a new study about kids like Austin, that made us only more committed to working together with other families like ours to make our dreams of a cure for NCM a reality. This of course goes along with our other goals of raising awareness generally about NCM, especially in the medical community, and providing more support and information for families affected by NCM and large congenital nevi. One thing we realized is that the extremely small amount of information on the condition is a main limitation. Nevus Outreach is growing very quickly in terms of people affected by large nevi, they had double the amount of people at the conference this year than in 2006, and they are trying valiantly to keep up in terms of resources. We have made a commitment to support this organization and we feel that the support they provide for families is just fantastic and life changing. However, there is a long way to go to achieve our goals. We felt a little discouraged at times because we are dealing with such a time sensitive problem, Austin's health is excellent right now and we pray every day that this remains the case. But the depressing statistics don't give us a lot to hang our hats on as far as an evidence-based reason to hope. But, you all know us, and we are NEVER giving up!! After feeling very discouraged for an hour or two we thought of it as, all these babies born with large nevi were told they weren't going to live- and look at them now as successful, absolutely lovely adults. Why can't the statistics be wrong about Austin too? Then we went back downstairs and met more awesome people and decided that we are going to do everything and anything we can to help achieve these goals. The sad truth is that there is no one out there that's going to do it for us.

Austin had a routine MRI for follow up on July 15. We are going to see Dr. Tomita at Children's Memorial today to get the results. Just praying that there are no changes (or only good ones). I'll update when I have the information.

Thursday, July 3, 2008

Austin's New Blog

Hello to everyone and welcome to Austin's new blog. We are moving on from the CarePage to give a little more flexibility and because it will hopefully be easier to access and keep up with this format. The big news right now is that we are getting ready to go to Dallas to attend the 2008 Nevus Outreach Conference. We are very excited to meet all of the people from Nevus Outreach who have been such a support system for us in the past 9 months (and to be back in Texas though we won't be able to make it down to Austin as we had hoped). Also we will get to hear from the top experts on the subject of congenital nevi and NCM. Austin is going to meet with a neurologist from Sloan Kettering Memorial Cancer Center as well.

In other news, I am knocking on wood as I say this, Austin has not had a seizure since late April. We are quite relieved about this! On the not so good side we have discovered in the past month that he is allergic both to dairy products and amoxicillin.

He is really starting to try to move around, rolling over and sitting up much better than before. He is moving to weekly physical therapy and twice monthly developmental therapy (although he was determined to be age appropriate developmentally, they want to keep an eye on it). He is starting to communicate with us too by waving hi & bye and signing for more when he is eating. He is so cute and cuddly.

We are getting excited about celebrating his first birthday with a huge party, just like we promised him back in September 2007 when he was in the hospital! We will let everyone know the details soon. In the meantime, we are preparing for our trip and plan to have lots of great stories and pictures to share when we return.

For more information on Nevus Outreach and the conference, go to