Walk with me on May 3rd!!!

As you all know, I've been fighting this AVM my entire life. And most of you have been there to witness my struggles and my triumphs! Recently you have all been so supportive of my journey through visiting my website and my blog, and by supporting me in my frequent trips to Denver. And I am so very thankful to have all of you in my life.

On May 3rd Josh & I will be participating in an awareness walk in SF. I would LOVE for you to JOIN ME IN WALKING to raise awareness. I know many of you are local, so take the short drive to the city and enjoy the sites as we do a quick 1 mile walk at Crissy Fields. It will be a fun day!

The Aneurysm & AVM Foundation (TAAF) supports those affected by BRAIN AVM's. And while mine is not in my brain, the research will ultimately benefit all of us suffering from this condition. Plus I have met so many wonderful "Brainers" through our support network at www.AVMsurvivors.org. They are my family and I am dedicated to support this cause!

For information about the walk, and to register, please visit the page below. When you register you want to join TEAM AVMsurvivors.org!

http://www.aneurysmfoundation.org/ev_walk4.html

If you can't make the walk, but would still like to participate, I also have a fundraising page set up for donations. I realize that many of you have already donated to me personally to help with my trip expenses, and don't expect that you will continue to donate to everything I get involved with! :) I am so thankful for the donations I have alreay received. I can't thank you all enough.

However, if you are interested please visit the page below.

http://www.active.com/donate/TAAFwalk/SWhitgob

Please forward this to anyone you think would be interested in being involved with the AVM Awareness walk. I hope to see many of you in the city in May!

Shalon

February Fun

Hello to all of my friends, family, and fellow AVM'ers! I haven't updated in a while but have a few things to share!


First I will start off by saying that I completed trip #12 in Denver, and everything went well. I feel good. I feel more like myself than I have in a long while. I finally am starting to feel like a "normal" person again. No longer in constant pain, no longer so worried about bleeding. And boy, is it a relief! I am confident that these treatments are working, and I'm pleased with the progress I have made in the past year. I have no doubt that I am on the right course and just need to stay steady and strong.


You can read my entire trip report on my website here. It was a good trip and I got to meet up with Allison again and this time her mom Jody as well. Also, I had a surprise when Sharon, another woman I met through my website, was also in for treatment the same day. I posted "glamour shots" with both girls in our fashionable hospital gowns! I really need to get a move on making something a little more flattering to wear on the next trip!


The weekend before we left for Denver, Josh and I met up with Camellia and her family for a Tea Party! It was great to meet them after emailing so often with Margie. The girls are beautiful and both very delightful! They played dress up a little with the fun stuff at the tea place (so did Dad!) Camellia ordered Bubble Gum tea (seriously made with bubble gum!) and Serene had Tutti Fruity which she added just the right amount of milk to, in order to create the perfect PINK tea! It was nice to connect with them in person. I think we will definately keep in close contact with this family for years to come!

And finally, I wanted to just update about the upcoming AVM Awareness Walk in May. Details are coming together and I just need to register for the walk and get my donations page up and running. I hope that many of you will be able to join me in person and enjoy a beautiful day in the city, walking at Crissy Fields for something that is obviously very important to me!

As always, thanks to everyone for your continued support, encouragement, and love!

Shalon

Small Successes

When I first started treatment last year with Dr. Yakes, he told me up front "I'm not the 'pretty' doctor." Meaning that his treatment wouldn't fix my face from a visual perspective, that would be done later with reconstructive surgery. No big deal, I understood. I've looked like this (or some version of it) forever and I'm fine with. I will turn myself into a super model with the plastic surgeon later!

But I have noticed changes to my face during the last year. I have less swelling in some areas because the blood flow has been reduced. The contours have changed in many ways. Some areas are smaller, some bigger. I have some weird "hard" parts that are...well...just weird!

This morning as I was getting ready for work, I was putting on my little diamond stud earrings (despite my high maintenance personality I'm not a big jewlery person) like I do everyday. But then I noticed I could actually SEE both of those earrings when I looked in the mirror. My cheek used to be so big that I would have to turn my head a little to get the angle where I could see the diamond on that side.

So a small success! But one I am very excited about. Dr. Yakes may not be the "pretty" doctor. But I'm pretty happy to see both diamonds sparkling at me when I look in the mirror. And it feels like a very big indication to me that the treatments that I am doing are making a difference and taking me in the right direction.

Hope everyone has a sparkly diamond day! I will!
Shalon

AVM Walk in SF May 3rd

Save the Date!!! May 3rd, 2008

I don't have all of the details yet, but for all of my local supporters I would LOVE for you to join me in raising awareness for Brain AVM's with TAAF's Annual Awareness Walk. We are trying to organize for many of the members of AVM Survivors Network to join as well. With luck I will be meeting some of my AVM family in person! What a wonderful day that will be!

I'll be updating here, on my website, and over at avmsurvivors.org as new details become available. The event is to raise awareness as well as funds, and we are already working on Tshirts which will serve to raise money and also to unite us as one AVM family as we walk.

Check back soon for more details!
Shalon

Baby Nathan's Memorial Service 1/17/09

Nathan James Avila Andaya

Sunrise- January 25, 2008
Morning Glory- January 11, 2009

Nathan James Avila Andaya was a beautiful little boy. With a huge smile, a high pitched little laugh, and eyes that shone with happiness. Everyone who has seen his pictures can agree that these things are true. But above all of this, Nathan was loved.

As I watched the Andaya family say goodbye to Nathan today, I was deeply touched by their sense of faith and family. I do not know them well; in fact I only met them in person today. But I have no doubt that Jaimee and TJ were wonderful parents and that everyday they shared with Nathan was a day filled with love. The outpouring of love and support was evident from the number of people that stood crammed into the chapel to attend the service to celebrate Nathan’s life. I have no doubt that his grandparents, great grandparents, aunts and uncles, and every other person who considered themselves extended family, loved this little boy and were delighted each time they were lucky enough to interact with him. Nathan was loved.

We were allowed to see into his life not only by the images on the screen, but by the words of those that loved him most. I sat with my husband and we listened to family members as they told us why Nathan was so special. Grandpa would get so caught up in playing and enjoying him that he would just decide to call in sick to work and extend playtime. Jaimee’s sister admitted that a visit from TJ & Jaimee without Nathan was met with the question “then why are you even here?!” And Great Grandpa put his own spin on AVM by switching up the acronym to AMV for an Angels Momentary Visit. We watched in awe as TJ played the violin and Jaimee sang “Paradox of Faith.” Nathan was loved.

Today was beautiful. Today was filled with family, friends, love, compassion, faith, balloons, doves, butterflies, sunny skies, and everything good. But the reason to join today, to mourn the loss of this little boy…was unbelievably sad. Throughout it all, Jaimee and TJ were gracious, thankful, and heartfelt in honoring their son. They showed strength of character and of faith that most of us can’t pretend to have. And I can only believe that Nathan was instrumental in making them the people that they are today. These young parents are a testament to what a wonderful little boy Nathan was and will continue to honor his memory and remind people of the “giver” that he was.

I can’t begin to understand the grief and sadness that TJ & Jaimee felt this week and today. Witnessing this beautiful young mother kneel next to the gravesite and weep for her baby boy was the most heartbreaking thing I have ever seen. I wished more than anything that there was something that could bring her peace and happiness at that moment. But I know she will have it again. She has faith in God that they will see Nathan again.

Today he was laid to rest with his family and friends close by to wish him well as he joined the angels in Heaven. His battle with this AVM is over, and Nathan is no longer suffering with the pain, the treatments, or the uncertainty. Jaimee and TJ are strong in their faith and belief that their little boy is now healed and sitting at the feet of Jesus.

Every member of our AVM family has been touched by the story of baby Nathan. The Andaya family and their struggle has been an inspiration to many of us. As we continue to face our daily AVM journeys, please remember the courageous fighter that Nathan was. May his example provide you strength and encouragement when needed, and may your successes and happy endings be shared in his honor.

Shalon

Nathan's website
Sign his guestbook

Baby Nathan

It is with such sadness that I post this blog today. Baby Nathan Andaya, our little miracle baby lost his battle to the AVM yesterday. He was a inspiration to our entire AVM family and we are all devestated to hear this news. Of course, his parents Jaimee and TJ are feeling the loss in ways that I could never imagine.

Please keep their family in your thoughts and prayers. And think of little Nathan, the battle that he waged and how hard he fought. What a little trooper he was!!!

Shalon

Jaimee's posting on AVMsurvivors.org

Dear friends..

I am writing this with a heavy heart to inform you all that Nathan has finally gone to be with the Lord. He passed away in me and Tj's arms January 11th,2009 @ 5:45am. CT scan revealed that he had a new bleed within the ventricles.

I just wanted to take the time to thank you all for praying for Nathan since the very beginning. I plan on starting some kind of fundraiser for Nathan..the money earned will go to a foundation that is doing research on AVMs. I will post again sometime in the future for details.


Thank you again for all that you have done for us. God bless you all


- Tj & Jaimee Andaya

Back from Trip #11

Got home today, and I'm still very tired and finally some of the pain is kicking in :( But honestly, it is very insignificant compared to my pain level last trip. This trip is a peice of cake comparably!

I haven't updated my website yet, but did at least want to let everyone know I was ok, and also to share some pics from this trip. We were lucky enough to see Cyndi & Mark, Arie and her parents Jody & Denny, as well as Allison and her dad Brad. Unfortunately we didn't get pics with Allison & Brad, but they did bring me a moose chocolate lolli and some salmonberry jelly, courtesy of mom Jody who stayed in Alaska this trip.

We also got to see Stephanie, James, and the girls, as well as a few of Stephs friends who flew in from all over to celebrate her birthday. It was a great time.

I'll update again soon, as well as my website with the full trip report (including Josh's plane drama...seems he attracks the looney toons!)

Here are a few pics from the trip. As always, click on te slideshow to get to my Picasa page and a larger version of the slideshow!