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

Cyndi is Superwoman!

Many of you are familiar with Cyndi, a fellow facial AVMer and Dr. Yakes patient! She has had a very rough month since her last trip to Denver in November. But she always manages to stay strong despite what this AVM hits her with. Her struggle has been so much harder than mine and I am in awe of the grace and courage that she displays.

She is also very lucky to have a great family, supportive friends, and a WONDERFUL husband Mark.

Cyndi just got out of the hospital (again!) and has updated her blog with this latest adventure... So head on over to her site and read about her AVM journey!

Trip #10...not my favorite!

Hey everyone,

Sorry for the delay in posting an update. This has been one of my harder recoveries and I just haven't really felt up to typing a posting. I'll update my trip report soon, cause the trip was a pretty good one...just the recovery sucks.

I'm pretty swollen this time. The first night my throat swelled up so much that I couldn't even swallow my pills. My sister had to crush up my Prednisone & Vicodin and put into water for me to drink. New plan-no water, add to juice!!! It was seriously grody and I didn't think I was going to be able to drink it! But I'm a trooper and got it down. Luckily, my throat is almost back to normal. Although I still have very little voice...I'm all raspy...

My face is still very swollen, including the area by my temple. And my ear is totally plugged up and driving me crazy. I've also had some bleeding, both from my gums (which was already happening pre-treatment and is really just some oozing although it seems to be more than before Friday.) I have an area inside my mouth where the wound used to be that now looks like a little blood blister. And ya, been having ugly arterial bleeding from that. No fun... I stayed home from work today and don't see being able to go in tomorrow either. I'm just a miserable little girl at the moment :(

But I think the treatment went well and I have just been spoiled because the last few have gone so well. Gave me a false sense of this being an "easy" journey. How quickly I forgot the sucky part! But how lucky for me to have had the opportunity to forget the sucky part!!!

So sorry for the sad little posting, I'll be better soon, update my trip report, and be back here with a much better blog posting!!

As always, thanks for the support and well wishes. It means the world to us!

A fellow AVMer's beautiful words...

Heros' Undercover

We are the lights to the world that some thing is wrong, we suffer so the truth can be found, and fixed. In the past Miner's took a little Sparrow into the mine with them, so the miner's lives could be saved. The little sparrows' gave their lives, and this warned the Miner's that poisonous gases where in the air. We are the massagers, we are loving and sensitive, we are chosen to be the beacons, too shine the light on the unknown. Deep in our hearts we know; others could not endure the physical and emotions pain we have lived thought. We are the heros' under cover.

This message was posted as a blog by Karen Robertson at www.avmsurvivors.org

She was nice enough to let me borrow and share with all of you.

It's all good!

Just wanted to quickly post that all of my AVM friends had succesful treatments this past week.

Keith was home the same day and sent me an email (while still all drugged up!) which said that they did even more "fixing" than originally planned. I am so excited to see his new pics in a few weeks.

Cyndi & Camellia were at Swedish the same day, but schedules conflicted and they weren't able to meet up. Both had successful treatments.

Cyndi did have a little drama this time around...what can I say, we are all drama queens! Check out Cyndi's blog for her trip report.

Margie, Camellia's mom also posted on her site details about their trip. With the best news of the week that Dr Yakes found no additional AVM in Camellia's mandible and also confirmed that it had not spread to her tongue! Good news all around.

As for me, I'm still feeling really well. Have had a little pain under my cheek bone the last few days and noticed that it hurts to open my mouth very wide. But I'm sorta thinking it might be a sinus infection or just allergies with all the crazy wind and fall weather we've had this week. So I'm gonna go with that instead of it being AVM related!!! :)

Keep everyone in your thoughts!

This is a popular week for my AVM friends! Maybe not a "fun" week for them per se, but busy. Cyndi and Camellia are both making trips to Denver this week for treatment. Not sure if they will be at Swedish at the same time, but just maybe they will get the opportunity to meet in person. Also, Keith is having reconstructive surgery which I believe is his last! So hopefully I will have some updated photos of him soon with his beautiful AVM free face!

C,C, & K- I'll be thinking of each of you this week, hoping for all good news, and sending hugs across the board!

Shalon

Andrea's AVM story!

Andrea has posted her story and her BEAUTIFUL picture up on my website! Please take a moment to visit my AVM Sisters page, and read about her experience and the battle she is facing to get approval for alcohol treatments.

She has been dealing with complications from her AVM, all the while preparing for and fighting her denial through an appeal. What a strong and determined woman! I'm so glad to have her as my "AVM Sister!"

So many new friends!!!

It has been so exciting for me to make contact with others dealing with an AVM. You all know about Stephanie and Andrea, my first AVM sisters. Then there is Cyndi whom I was able to meet in person on my last trip to Denver, and Keith who has now promised to let me be a star in his movie! (Yes Keith, I've just promoted myself to the star...it's all about me!) And most recently I have introduced you all to Camellia, the most beautiful little girl!

But I'm lucky to be in touch with other AVM-er's as well. From Alaska, to NY, Hawaii, and even Cypress! It is so great to make these connections and to share our experiences. Each of us has such a unique experience, yet we still can relate to each other.

A few nights ago I spent an hour and a half talking with a woman who has an extensive facial AVM! She has had lots of surgeries, embolizations, and complications I have never dreamed of!!! Time flew by as we shared stories and talked about our families. By the end of the conversation we had even promised to become each other's "reality" check when it comes to avoiding stress! (She's even more of a control freak than I am! )

I've also found such a wonderful supportive community at the AVM Survivors Network. I don't know that I have ever seen such a great group of people who are so welcoming, friendly, and interested in helping each other. It is a great place to be!

When I decided to post my story online, I was hopeful that I would find other people like me. I'm so thrilled with the response that I have recieved, and for the new friends I have made!

Go away Scabbies!!!

I'm almost scab free!  The last of my bulky scab came off two days ago and I have just a thin little layer covering the left side of my lip.  Just a very little wound still hanging on.  It's actually been getting worse for the last few days.  Had a few very small bleeds in the past week as well.  But seriously small and easy to deal with.  Yikes!  I'm trying not to equate the tissue breakdown with the fact that I have just gone back to work...maybe it is just a coincidence?!?!?  I'm keeping an eye on it and will probably call Rhonda or Julie next week to get their opinion on it.

Cyndi's timeline

Ok- I updated the picture page on my website with a timeline for Cyndi starting at 28 until this weeks embo! Her blog is also up and running if you want to find out more info about Cyndi's story, check it out here.

Now I just need to get confirmation from Keith on his.

And eventually my AVM-sisters, Steph & Andrea will get me some pics also!!!

Updated pics!

So Cyndi sent over the pictures she took of us from this week! I have to say again that she makes me feel like a wimp...but oh well, we all have varying degrees of this AVM and all face different challenges.

Here is a just one pic, but to see all the them, check out the slideshow on my website.

I'm also going to be adding some additional photos of Cyndi, and some of Keith once I get them all put together in a timeline slideshow!

Hope you all are enjoying my unlimited AVM posts!!!

Shalon

Back from Denver...and I'm a snob!

We just got back from my 7th trip to denver for treatment. Everything went well and I'm feeling great. We got to meet Cyndi (another Yakes patient I've been emailing with) and Eric the new PA.

And although many of you have never doubted my "snob" status, it is now official! I can no longer deny it with the proof written clearly on my Denver Trip Log 7. You will have to read it if you want the proof!

I'm glad to be home and in my own bed. But I wanted to say a BIG THANKS to Jenn & Allen Astwood. Jenn for being soooo generous with her offer for Josh and I to stay at her vacant Denver condo when I am in town for treatments, and Allen for taking the time to meet us at the condo, give us a quick tour, and hand over the key! You two were lifesavers this trip (as evidenced by my snob story!)

I've also updated my "Timeline Pics" on my site. I'll also be adding some pictures of my angios & MRI's, Keith, and Cyndi in the near future- so check back to my pictures page...although I'll post up here when they are ready also!

7th treatment down...who knows how many to go!

A little less scabby today

So when I got to HBOT today I noticed that the gigantic scab on my face from last months embo, was kinda loose and hanging. A little nudge and it came off (I promptly threw it on the ground and stomped on it with a "good riddance!") So now there is a little bit of an ugly scar, but who cares! It is much better than the wound. I updated my "Timeline Pics" with a new one from today w/o the scab!

Now I just need my lip and my hole to finish healing! Progress!