I have alcohol running through my veins!!!!

Literally...well, ok not really. But I do get alcohol injections about once a month (and not the "fun" kind!)

I have a facial Arteriovenous Malformation (AVM) and am receiving ethyl alcohol embolizations with Dr. Wayne Yakes in Denver.

So while the alcohol isn't actually running through my veins (that would be really bad) it is being injected into them to destroy the AVM vessels and eventually provide a cure!

Check out my website to read my story about life with a facial AVM, meet my doctors, and stay up to date on my treatments through my "Denver Trip" reports!


Thursday, January 22, 2009

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!

Monday, January 19, 2009

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!

Saturday, January 17, 2009

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.


Nathan's website
Sign his guestbook

Monday, January 12, 2009

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!!!


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

Saturday, January 10, 2009

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!

Saturday, January 3, 2009

Snow Trip to Ice House

We decided to head up the road to the snow today and let our doggy play. He seriously loves the snow and we had nothing else better to do. So we packed a picnic and started out up Hwy 50. It only takes about 30 minutes before we hit a little snow, and 1.5 up to our favorite spot at Ice House Reservoir (mind you, in the Summer we camp and go out on the boat or kayak!)

A few minutes up the road, Josh spotted our friends the Burkes in his rear view mirror. They too were headed up to let the kids (2 humans, one K9) play in the snow, so we told them to come with us. So we turned off the hwy and started the climb up the hill. As we went around a turn Josh says "That looks like Chris' truck" and sure enough our friends the Roths were up already playing in the snow. Seems like everyone living in El Dorado Hills had the same plan for the day.

We all made it up to the lake, and it was a great day! Thought I would share some pictures with all of you.

Here is a link to the slideshow!!!

Hope everyone is enjoying the new year and that the first few days of 2009 are treating you well.

Thursday, January 1, 2009

Hello 2009...Goodbye 2008!!!

Ok, so I didn't actually say hello to 2009 until this morning, but that's not really important...pathetic, but not important!

2008 was a quiet year for Josh and I. We didn't have that many adventures or "new" things happen. Our regular exploring, camping, and visits with out of town friends was curtailed because this AVM demanded to be center stage. There were many trips to Denver, and lots of days spent in PJ's watching TV. But even with a temporary change in lifestyle, we were happy because we were together. My husband is the best person in the entire world and I'm thankful to spend everyday with him, even if we are doing nothing!

I have so many things to look back on that are happy memories and good times. Here are some random memories I will cherish from 2008.
  • My traveling partners and the wonderful times we had spending time one on one for a few days! Thanks Pam, Mom, Jan, Taryn...and of course Joshie!

  • Spending a weekend with Matt & Catharine and finding out that the answer to everything is "your significant other!"

  • Seeing my girls, Jenn & Carrie, when they spent a weekend putting on a fundraiser to help with my travel expenses. (Thanks to Danielle as well!)

  • Going to the fire station for our first vote in El Dorado County and filling in the bubble for Obama!

  • Meeting Cyndi and Mark in Denver and helping her with her blog.

  • Our one camping trip in July up to Hope Valley where I got to do my favorite thing...sitting in the morning sun drinking coffee. And Pam & Dave spending the day with us exploring the beautiful scenery.

  • The beautiful flowies from my AVM sister Andrea!

  • Watching Reese & Summer bowl for Reese's birthday. (Those little ones are so cute trying to throw the heavy balls!)

  • Shopping trip on 16th St with Jan.

  • The first "guest book signature" I received after publishing my website. That was exciting!

  • Finding AVM Survivors Network. I am so thankful for that place and all of the wonderful people that I now consider family.

  • Dinner at Watercourse with Steph, James, Perry & Jolie! Such a great place and such wonderful friends.

  • Celebrating my parents 50th wedding anniversary! What an accomplishment that is. Josh and I have 39 years to go!

  • The generosity of Jenn Astwood and all of our stays at the Denver condo!

  • Sushi at Wasabi's with Ali & Garrett. Or was that Audry Hepburn???

  • Watching Huddy at the new Dog Park in Folsom...he just loves it there!

  • My three month "vacation from work" and the opportunity to relax, reflect, and really gain a healthy perspective on my life, my AVM, my priorities, and the overwhelming support and love that I am surrounded by.

  • All of the new friends who have contacted me through my website and this blog!

  • Seeing the "East Coast Hugheys" and spending Christmas with ALL of my siblings.

  • Having a picnic with the Parents (Hugheys & Whitgobs) up above Caples Lake.

  • Beautiful drive home from Tahoe on Hwy 88 with the blue sky and fresh snow. I don't know anything that feels as calming and peaceful.

I have so many wonderful memories of 2008. Lots of "smaller" and less exciting events to reflect on. But sometimes the simple days and the simple memories are the ones that last a lifetime and are the ones that mean the most to us. I thank everyone in my life for helping me to build those memories and to provide me with so many things to be thankful for.

I hope 2009 brings many wonderful memories for all of us!