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

Very Sad News

I'm so saddened to hear the news that our little Miracle Baby, Nathan Andaya, is losing the battle to his AVM. He has been a courageous little fighter, and so have his parents. When I logged onto the message board this morning, I read the following post from Jaimee-

Nathan Andaya..the Lord will be calling him home

i don't even know how to start this..

first off, I would like to say thank you to everyone here on this forum who has been there for us throughout this whole battle..your encouraging words, prayers and kindness mean so much to us..

unfortunately Nathan will not be making it..initially one of the two main veins clotted..and now the second one had clotted off (due to high pressures of the AVM)..unfortunately there is nothing the doctors can do..right now Nathan's brain continues to swell due to the increasing pressure..he is on morphine and tylenol to relieve any kind of pain..we have been placed in a private room so that family members and friends can come to say goodbye..we were given an estimate of 2-3 days starting from today (dec 6th). The last CT scan revealed that Nathan had already suffered from strokes and additional severe brain injuries..right now he is currently sleeping..he is still being monitored but we decided to take off his feeding tube..

thank you everyone for being such a blessing to us..please pray for Tj & I...God bless

You can read Nathan's story on his website http://www.nathanj125.com/ and his mom's blog postings at AVM Survivors Network

Please keep them in your thoughts and prayers

Another AVM survivor

I got an email this morning from Donna, a woman whom I have been emailing with who has a brain AVM. When we first began talking, she was having embolizations for the AVM and was in alot of pain from severe headaches and other side effects. She ended up needing to have surgery instead of continuing with the embo's because her AVM was causing heart problems.

I continue to be amazed with the different symptoms and side effects of these things. Donna's arteries were so enlarged that when she swallowed, a nerve was being constricted causing her to become lightheaded to the point of blackouts! It also would cause her heart rate to drop drastically and then her heart was working overtime to catch up! Crazyness!!!

Anyways, the surgery was a success and she can now claim to be an AVM Survivor! She still has the road to recovery and will need some therapy, but feels like the worst is behind her.

Such wonderful news and I couldn't be happier to be a small part of her experience and to be able to share in her joy! Please keep Donna in your thoughts and send her some good healing vibes!

Being able to make contact with all of the wonderful AVMer's has been a surprising benefit to such an ugly medical issue. I never anticipated that I would experience such joy and happiness from anything related to this AVM. But I am glad that I have the opportunity!

Shalon

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!

Random place for my website to show up!

So Josh had posted my site on his LandCruiser forum a while ago just to chat with his LC friends and such.

Today I was looking for AVM info and found a website affiliated with Stanford called "wellsphere." I'm not exactly sure what it is, but they have an area called WellMix 360 and it shows trusted sources, web results, blogs & news, etc. http://stanford.wellsphere.com/wellmix360/arterio-venous-malformation

Anyways, Josh's post on Ih8mud comes up under the "blog & news" section. So that was neat. Totally random and round about...

Another Facial AVM

I have been emailing for the last few days with a guy who also has a facial AVM. He has opted for surgery instead of embos. Him and I have had a friendly debate over the benefits of each treatment and agree that we would make a great "case study" to see how the two options are both similar and different, which is better, and what the long term results are. So here is the story he sent me detailing the last 32 years for him!

I was born 8/9/76 with what appeared to be a port wine stain on my right cheek. My parents were told it was a hemangioma and would go away by the time i was 6 or 7. It didnt. My parents found a surgeon to speak with (Mt. Sinai hosp) and his recommendation was surgery (at this point the term AVM didnt exist). My parents (and i guess myself, i was 6) felt that was a drastic route to take so they sought another opinion, a Dr. Sedak Hilal. He had a new procedure (that i believe he was part of pioneering) called embolization. A non- surgical way to control the growth. So rather than a massive invasive surgery, we could work on it with a non-invasive, less risky, procedure (though still very risky, stroke, etc) I had 2 embolizations at the age of 6 1/2 and 7. Then another at 10 (with minimal improvement in size, it would come down, then pop back up (it was always swollen, even from birth).

At the age of 14 or so (when i hit puberty) we saw a large growth in the AVM and decided it was time to explore surgical options. We met with a Dr. Mark Sultan (columbia presbiterian, recomended by Dr. Hilal). And the plan was to operate (nov. 19th, i remember that date well for some reason)...but in the preparation for this i had visited with a neurosurgeon who felt that the AVM was too massive and that any attempt to remove it would be seriously life threatening. So we backed out and I had 6 embolizations in a 9 month period (my 10th grade of H.S). Dr. Hilal also had developed an experimental substance (he called the Hilan Gel) similar to the glue they now use...it worked, but again not for long.

At the age of 17 it began to grow again, this time more than ever before. It got to a point of ulcerating the skin and bleeding from the surface (up to this point, unlike you, i had never dealt with bleeding). This scared me, so i sought a dr. that Dr. sultan had said he had trained under in Boston, a Dr. Mulliken. He saw me and said there is only one thing to do. and i quote "Remove that sucker." He at the time had operated on 12 AVM's similar to mine and that was considered alot. He was considered at the time ('95) the worlds leader in this. So we went ahead with the surgery. 2 preop embolizations, and 21 hours of surgery later, I made it. They had to use skin and tissue from my abdomen in whats called a tissue transfer to make up for the loss of pigmented red skin etc.. It looked ok, but one more surgey later, it looked alot better. I had another surgery in '97 then again in 2000.

The problem now is regrowth. It continues to want to proliferate itself. So from 2000 to 2004 i left it alone, fed up with it really. It continued to grow. So finally in 2004 i decided to go back tothe dr's i once saw in NY (dr. sultan) and see what if anything new is out there. He sent us to Dr. Alejandro Berenstein (who you should know, the pioneer of the alcohol embolizations, and the absolute best at what he does (endovascular surgeon))...He told us about this amazing doctor, Dr. Waner, who is coming to NY soon. Timing was perfect as I was one of the first patients he treated in NY. He operated in 2004, then i had follow up cosmetic procedures (3 of them) with another surgeon (which didnt work out so great) But am now back with Dr. Waner ( i had my most recent surgery in April, i have one scheduled for october and then, i think thats it. Hopefully. And it looks amazing.

Website is all up to date!

I finally finished updating my trip reports under the "Denver Trips" page. All of the Medical Mumbo Jumbo took a long time to type up and a lot of spell checking!

I also wanted to say thanks to everyone who has signed my guestbook and sent me emails with such wonderful and encouraging words. I really do appreciate all of the support from family, friends, and strangers (new friends!) I've also been very welcomed at the new AVM Support Network that I joined. It is mostly "brainers" and I haven't heard from any "no-brainers" yet but still am excited to have found the website.

I'm feeling well but still super freaked out about the hole in my face. It is seriously gross and actually leaks grodiness like saliva, water, or whatever I put in my mouth! Brushing my teeth is fun cause when I rinse my mouth it comes out my hole... Ya... But I'm learning how to keep it to a minimum and seriously trying not to imagine it healing without closing up and leaving a permanent hole in my face! But normally I don't have that kind of bad luck. In my family we leave bad luck to my sister Taryn!!! ha ha ha