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!


Wednesday, December 23, 2009

Yikes! It's been so long...

I can't beleive I haven't updated my blog in three months! Shame on me. I'm a bad blogger :(

At least I have some GREAT news to share with this posting.

December was a busy month for Dr. Yakes and using the word "DONE!" I have no idea how many patients heard these wonderful words, but three of my AVM friends did! Congrats to Chris, Allison, and Camellia for reaching the end of their AVM journeys. Such a nice Christmas gift to know that they no longer have to make the trek to Colorado each month for embolizations. Follow up appointments just to check in, but hopefully this is the end of their treatment plan and they can just continue with healthy, happy, AVM free lives!!!

I've had three Denver trips since my last update and have managed to completely fail at all updates both here and on my website! October was a hard trip for me (spent my first overnight stay at Swedish) and I've just never been able to catch up since. Oh well, the best of intentions... I should have some down time right around the New Year and will get myself caught up then. Promise!

December has been a good month, starting with my mention (I'm destined for stardom) in a Chicago Tribune newspaper article by Nara Schoenberg about the trend of homemade hospital attire. You can read the article here. Pretty cool if I do say so myself! Had an easy Denver trip with Josh, and am now excited to see all the family this week to celebrate the holidays.

Last but not least...I'm almost ready to launch my new online business selling my "Glamour Gowns!" All very exciting stuff and I can't wait until it's ready. Here is a sneak peak at our logo!

Saturday, September 26, 2009

Two Year Anniversary!

It's hard to believe but October marks the two year anniversary of my "Yakes AVM experience." This upcoming trip will be my 20th alcohol embolization. It just doesn't seem like that much time has gone by or that I have made that many trips out to Denver. I guess that is a good thing though. Time flies when you are having fun, right?!?!?

I continue to be confident in the progress being made to beat this, and hopeful that one day I won't have to worry about my AVM. In the meantime as I look back over the last two years I would say that the one word which keeps coming up over and over is "grateful." While this AVM is often an ugly thing with struggles and pain, it also has a silver lining. So here is a list of some of the wonderful things that have come out of having this AVM and being on the journey I have followed for two years.

-Support. I always have felt loved and protected by friends and family, but the outpouring of support from those close to me has been overwhelming. It makes me feel like the luckiest girl in the world. From my trip partners, everyone who has donated to my "travel fund," my work for accommodating my schedule, sympathy and compliments on my super model pics... everything that makes this experience a little easier is appreciated.

-New friends
. The people that I have met have added such value to my life. My AVMer's as well as the nurses and other hospital staff are people that I would never have had the opportunity to know had I not been blessed with this AVM. I love them all sincerely and feel honored to be able to share with them.

-Denver. What a great city! I've really enjoyed the opportunity to experience a "second home" with these trips. It isn't like taking a vacation where you see a few sites and take pictures. We have had the opportunity to explore and really connect with another place. The lightning and thunderstorms are awesome. And this place also ties back to "support." How awesome is Jenn Astwood for letting me invade her home each month and has never expected any compensation. I will find a way to repay this generosity somehow.

-Perspective. How can you not re-evaluate the important things in life when faced with this difficult journey? Josh and I are typically "glass half full" people and already felt like we had a wonderful life. But I have found myself able to enjoy some of the simple things and find at least 10 things everyday to make me smile. And I would be as bold as to say 10 is on the low end of a normal day! I've been able to de-stress some, to be less of a control freak, to not worry about the things that I can't change or the things that really aren't important. I can recognize all of the wonderful things I do have and dwell on those instead of what I don't.

. It makes me feel great to be able to help people. And I will totally admit to being selfish in wanting that feeling all the time! Starting this blog and my website, putting myself out there for others to find even when the pictures are ugly and swollen and drooly...well that makes me feel good. To provide a resource for a concerned and confused person newly diagnosed with an AVM, or a parent who just found out there child has one and is wondering what is in store...that makes me feel good. To help even a little by giving some direction and some information, by pointing someone to the right websites, or even giving someone a wakeup call by looking at my pictures...it makes me feel good. By being a part of AVMsurvivors.org and chatting with other people facing similar situations...that makes me feel good.

I have no idea how much longer it will be before I can claim to be AVM free. I don't know what other challenges and surgeries I will face as part of this experience. I don't know what the final outcome will be.

But I know that I have so many wonderful people in my life that will keep helping me through this. I know that I will meet even more that will become such an important part of my life. And I know that my story and my experience will keep being out there to act as a reference and resource for other people.

And for all of this I am grateful.

Thursday, August 27, 2009

What!!! I'm totally the athletic type...

So yes, I'm sorta crazy and now think that I'm a runner. Ok, not really. I do know I could never really be a runner. Carrie can back me up on this one cause she used to try to make me run with her in high school. And that was really just a quick "jog" around the block. :)

But on October 4th Josh and I are going to participate in the San Jose Rock & Roll 1/2 Marathon! I'm hoping I can finish in the 4 hour time limit. :) no problem, right?!?!?

A few friends are already on board to do the run, and of course I'm convincing everyone to wear AVM T-shirts. I'm actually thinking we may need to make new, cool, "rock" themed T's for the race.

This is nothing formal, just a fun time to get together with friends, raise a little AVM awareness, and go out for some good food after the race. So for my Bay Area friends, please consider joining us for the day!


Tuesday, August 11, 2009

Video to spread awareness

Hello all of my wonderful people!

I wanted to share this wonderful video with all of you. It isn't specifically for AVM's but it is related and created by the wonderful Ben Munoz who is the brain child (sorry I couldn't resist!) behind AVM Survivors Network.

Read Scott's note here from his blog Kenny Kellogg and go on You Tube to help promote the video!!!

I am continually amazed by these guys, their determination to help support people suffering from rare medical conditions, and their continued effort to get the word out. What an admirable mission they are on.

I feel so very lucky to be a small part of this and hope you all will support me by recognizing the wonderful opportunity that Ben and his friends are providing to us. So do as Scott suggests, help us spread the word!!! Reblog, add to facebook, vote for the video on you tube! It will only take a moment but that small effort can make a real difference.


Wednesday, August 5, 2009

How time flies!

We are back in Denver already. It's hard to believe that it's been four weeks and that it's already time for another treatment. But it is, so here we are!

I am meeting with the Plastics doc, Dr Snively, today to see what's going on with the wart hog. I actually kinda think it's getting a little better. Except I've been very leaky lately. It's just gross. ha ha! I don't really care but I do feel sorry for the people who see me everyday and have to be grossed out by the constant plama fluid leaking from my wart hog. I mean really, who wants to be subjected to that?!?! As one of my employees put it "lots of eye contact!" Nice to know they have a strategy to deal with me! :)

Josh and I hope to make a drive out to Pikes Peak and do a little exploring on Friday if I'm up to it. Maybe bring a picnic or have lunch at the super fancy hotel out there. We'll see. So I may have some fun pics to post in the next few days (since I think I'm a photographer!)

And of course I have a new gown. Even bought a serger although I was so sad cause I don't physically have it yet. So this gown is the old fashioned regular sewing kind. And as always, I don't have enough time to do things, so I was frantically trying to finish last night. Didn't get to make a bag to match, but got the gown and cap done. And still managed about 3 hours of sleep before heading to the airport. I'm a multi-tasker! :)

Tomorrow is treatment #18, and I'll let you all know how it went. Don't forget to check out my website and read all about trip #17... Here is a quick teaser... Another Shalon Rae!!! Go read it!

Wednesday, July 8, 2009

Why is the sun out???

We spent the 4th of July holiday with my sister Michele just outside of Seattle. Josh was soooo excited to escape the heat of Sacramento and get up to the dreary skies that are stereotypical of Seattle. Unfortunately the day we arrived it was sunny and near 90 degrees. What the heck?!?!? Josh was so sad. But over the next few days the overcast skies returned and he was much happier. Meanwhile I was searching through Michele's closet for another jacket to layer.

We did the typical tourist activites. After dropping off our luggage, we headed up to Mt. Rainier to explore the mountain, lakes, and all the beautiful scenery. My nephew, Little Josh (he hates that!) had to suffer with the old people all day and was most likely bored out of his 13 year old mind! It was sunny and hot! Back at the house, my niece Jessica and her family came over to celebrate the 4th with a BBQ out back. We played frisbee with the dogs and let little Jasmine entertain in the way that only a one year old can. But after getting up at 4:00 in the morning, flying in, a trip to the mountain...Josh and I were total party poopers and headed off to bed about 10:30. Saw a couple fire works out the window while getting ready for bed and figured that totally counted!

The next day we were off to Seattle and the Market. After lathering up with sunscreen (ya, it was still sunny and hot) we found our way to Pikes Place and the famous fish throwers. Took all the necessary pictures, wandered around the farmers market and watched some street performers. Bought some raspberries, a peach, and some cheese. The flowers vendors had great bunches for sale, but we couldn't take any with us as we had a whole day planned out. But they were fun to look at. Next we found our way down to the waterfront to do a little shopping before grabbing the ferry over to Bainbridge Island. It was fun to ride across Puget Sound and to see all the very cool houses up on the hillsides with what must be great views of the city. We wandered around the island and had dinner at Casa Rojas. The weather had finally cooled down to a more typical Seattle temperature and since we opted to eat out on the deck, I had to pull out my trusty sweater. Josh was glad to see the clouds rolling in a little! Back across by ferry, to the car, and home for the night.

Monday morning we slept in a little and Dean's daughters came over for a quick visit. Josh had made plans to stop by to visit with his high school friend Rhett in Tacoma. We had a great little visit and hope to see him again to celebrate the opening of his brewery later this year. Fun! After leaving Rhett's, we took the short drive to Gig Harbor for dinner at The Tides. A nice little restaurant that seemed very established, old and cozy. We had a good view of the docks, boats, and some nice houses across the water. After dinner we took a little stroll through downtown (even the ice cream shop was closed!) and decided to take a drive up the hill to see some of the views from where everyone actually lives. We played the "take me" game and grabbed all of the real estate flyers outside the houses for sale. Picked out our favorites to pretend we were all moving to Gig Harbor!

Later that night Michele helped me make Glamour Gown #4 for my treatment this week. She has ALL the fun sewing supplies (she works at a sewing store) and my new favorite toy was her Surger. I have to get one for sure as it made everything sooooo much easier. We brainstormed on the annoying "tie problem" for my gowns, as I have changed those for each one and still wasn't happy. Michele came up with the brilliant idea to use shoe laces and it worked perfectly. It may just be the keeper!

Tuesday was our last day in Washington. Michele had to go back to work, and we packed up all of our stuff to get ready for Denver. We really only had two souvenier T-shirts, and a new pair of shoes for me (my tennis shoes were lost in the black hole back in Sac) so we had no problem getting everything back in the suitcases. After hanging out with Dean and playing with Levi, he took us back to Sea-Tac and we flew out to Denver.

Treatment #17 is tomorrow. Appt with Dr. Reed later tonight, and probably sushi for dinner at Mikuni's. I have the early 6:00 checkin tomorrow (score!) and hopefully will get a chance to talk with Dr. Yakes for a while. I have been stressing out about my Wart Hog (the wound on my cheek) with some bleeding episodes and general tightening of vessels in my neck. Changes are expected of course, but my control freak personality just needs to "know" what these changes are, what they mean, and wether I should be concerned. We'll see how that goes... I also should get to meet the new PA Kelly tomorrow. Unfortunately she has already experienced my high maintenance-ness through email. Sorry! But I do have my new gown, cap, AND a matching bag (to replace the white plastic "property of" ones) so I'm totally ready to strut my stuff down the cat walk (aka the pre-op hallway) to show off!

See you all on the other side!

Sunday, May 10, 2009

Back from Trip #15 in Denver!

I have updated my website with all the details on Trip #15.

Quick recap-

-early flight
-Sunburned again??? I should know better...
-My recap at Dr. Reeds of the good reanactment of the shower scene from "Psycho."
-Didn't buy anything at the mall...well Jan did!
-Yummy Thai food
-Yay, 6:00 check in, with Jennifer as my nurse
-Rhonda, tell me it aint so!!!
-Chocolate pudding and I'm outa here.
-My poor little eyeball hates getting attacked!

For the real story, check out my Denver Trip Report #15! Sorry, i'm still tired and wiped out so I'm cheating and making you all go read the website!

Don't forget to also read my report on the AVM Walk!

Shalon :)

Monday, May 4, 2009

Kenny Kellogg: AVMSurvivors.org at AVM Foundation's 4th Annual Awareness Walk

Scott has posted a short video from this weekend with quick little clips of AVMers and their supporters. Click on the link below to watch the video. How cute is Jaclyn?!?!

Kenny Kellogg: AVMSurvivors.org at AVM Foundation's 4th Annual Awareness Walk

Sunday, May 3, 2009

We Walked for AVM Awareness!

The walk was great!!! Albeit a tad cold and a little wet. It was still a wonderful event and I want to thank TAAF (with a special thanks to Angela) and Sports Basement for being so wonderful with putting this all together and giving us an opportunity to raise money and awareness for this rare condition. The AVM Survivors Network team raised over $10,000 for this cause! Go Team!!! Thanks to everyone who donated to my personal fundraising page. My goal was $500 and with your help I ended the effort with $900! Almost twice my original goal. What great people I have in my life!

Josh and I were very excited to meet our AVM friends/family on Saturday night, and then walking with them today. Ivanna, Doug, Nich, Matt, Kim, Dan, Justin, Jaclyn, Scott, Margie, Greg, Serene, Camellia, Jane, Mary, Greg's nephew & fiance and Margie's friend (sorry I forgot your names,) Jaimee & TJ and ALL of their blue hat supporters, Carolyn & her brother, as well as my family; Taryn, Jason, Jan, Dave, Pam, AK, Billy, Glenda, Trina, Kevin, Summer & Reese... thanks to everyone who came out this weekend to make this event memorable and to support and celebrate our "brainers!" This will be a memorable weekend for me and I have appreciated all of the support and friendship from everyone!

Click HERE for a slideshow of pictures from this weekend. I will be uploading additional pictures as I get them from the other walkers. So check back in a week or so to see more pics of this wonderful group of people.

The weekend went by so quickly and I'm sad that it is over! I can't begin to explain how important it has been to make these connections with other AVMers. And I know they all feel the same way. We share a bond from an unfortunate situation, but a special bond just the same.

If you look very closely you can see the Golden Gate was the backdrop for our walk!

I leave again on Wednesday for Denver with Jan as my travel partner. I am counting on these trips to continue on the "easy" path that I have been on for the last few, but know that the chance of a road bump is always there. I'm feeling strong and healthy, optimistic and content. Thanks to everyone who continues to keep me in their thoughts and prayers. I really do appreciate it.

I'll update again when I get back from Denver.


Saturday, May 2, 2009

AVM Awareness Walk

Hello everyone!

I know I haven't been a good blogger lately. Been busy with last minute items for the AVM Awareness Walk tomorrow in SF. And we are so excited!!!

So a quick note that I did update my website with info about trip #14. I do still need to upload pics of the trip and specially the cute matching sockies that Alison and I had!!! Soon.

We are in San Francisco now and in the room at Hotel Del Sol. Just got back from our Meet & Greet we had as a little pre-event before the big event tomorrow. It was really meant as a chance for all of the out of towners to meet up and get to know one another before we all walk together in the morning. And it was a great little event. So nice to be able to put a face to the names, shake hands, share some hugs!!! And Kim & Jaclyn brought me a little gift, a GREAT new Tshirt that totally captures my "Alcohol is the new Glue" blog theme. I love it! Thanks ladies. It's perfect and I can't wait to wear it.

We were lucky to have Sports Basement provide a meeting spot for us last minute since our previous plans to BBQ here at the hotel were sabotaged by the rainy weather! We also were fortunate to have Angela with TAAF help arrange this meet & greet and work with Lucca Deli to provide sandwiches for us. So a huge thanks to everyone for making this happen.

I have a slide show of just a few pictures posted on my Picasa page. Unfortunately I was so wrapped up in meeting all of my AVM friends, that I totally forgot about taking pictures until Carrie called and inadvertently reminded me! Thanks C!!!

The walk starts early tomorrow and I promise I will be a much better picture taker this time!!!


Sunday, March 22, 2009

AVM Survivors Network

As many of you know, this past year was a very difficult one for me. I was in bad shape with my AVM, lots of pain, ugly wounds, crazy bleeding... And I can absolutely say that I am feeling so much better today. The difference between today and one year ago is like night and day.

While my treatment with Dr. Yakes has obviously played a huge part in my improvement, I also know that the community over at AVMsurvivors.org has been instrumental in my mental and emotional health. I will be eternally grateful to Ben Munoz for creating the site, and am so vey happy to be a part of this new family.

This morning as I logged into my iGoogle page, I saw that my new friend Scott Orn had posted a link from his blog about AVMSurvivors.org. Turns out that our AVM support network is featured as Site of the Month at Northeast Center for Special Care.

Our AVM family tells Ben all the time how grateful we are, and how he is the coolest kid around. But it is very nice to see him, and the site he created, recognized by others for the benefit it offers to people suffering from Arteriovenous Malformations.

Go Ben!!!

Tuesday, March 17, 2009

Update- AVM Awareness Walk

Hello friends and family!

Just wanted to update you all on my upcoming AVM awareness walk! There are at least 4 other people (families) from my Support Network that are absolutely going to make it to SF, and a few more that are still maybes. We hope to have a large group of AVM survivors, family, and friends to represent us in this walk. I'm super excited to meet everyone in person.

I know there are a some of you that have expressed interested in walking with me. All the details are on TAAF's website, but you can just go straight here to register and choose to join the AVMSurvivors.org team! With luck, it will be a nice sunny day in the city and we can all enjoy a quick 1 mile stroll with the Golden Gate as a backdrop. I would LOVE for you to walk with us!

If you want to stay the night in the city, TAAF has arranged for a room discount at Hotel Del Sol. Josh and I will be staying Saturday night and plan on having a big get together with my friends & family, and host our out of town AVM guests! We hope you will join us and make it an entire weekend of fun. To get the discount rate, call the hotel at 1.877.433.5765 and tell them you are with the TAAF Awareness Walk on May 3rd!

The team's fundraising efforts are paying off as well! We set our goal to raise $3000, and thanks mostly to our Team Leader Kim, we are already at $2570! Nearly there. How wonderful is that?!?!? If you are interested in donating you can visit my page or just to keep tabs on our overall team progress here.

As always, feel free to pass this email along to anyone you think would be interested in the Aneurysm & AVM Awareness Walk!


Wednesday, March 11, 2009

Please sign Andrew's guestbook

Hello friends and family!

I have a special request for all of you today! Please take a moment to go to Andrew's Caring Bridge site and sign his guestbook. With a brain AVM that was treated by craniotomy in 2008, the reoccurence has meant that his family is back in Arizona to fight this battle again.


Andrew will be in tomorrow for his second Craniotomy and is one tough kid! As you can see from his picture, he is ready for "round two" with this AVM and ready to completely knock it out!

Andrew really enjoys reading all the comments that are left and seeing where everyone is from. His goal is to reach 100,000 signatures!!! What a goal to make and I hope you will help him with this!


Saturday, March 7, 2009

Denver Trip...Lucky #13!

Hey everyone! I'm back home from our quick trip to Denver this past week. Treatment went well and the trip was pretty uneventful! I'll be updating my Denver Trip page on my website soon with more details.

I did just want to quickly post up here that I was home and feeling good. I'm a little swollen but not as much as the last two times. I have a little achy pain in my face, but nothing big enough to require anything stronger than some simple tylenol. So no biggie!

Here are a couple of pics from the trip! First two are the previews of my new "glamour gown" that I made to wear instead of he hospital issued ones. I did my stroll through the nurses station and made sure the other patients were jealous! Really, I have NO desire to be the center of attention! ;)

Then of course, are the "right after treatment" pic, and the "day after treatment" pic. Not too bad!

So that is my quick update. Will get my website updated soon!!! Thanks to everyone for checking up on me all the time and the well wishes!

Monday, February 23, 2009

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!


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.


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!


Monday, February 16, 2009

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!


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!