Alcohol...it's the new glue!

AVM Walk this weekend!

2011-04-28T23:04:00.001-07:00

Hello family and friends!

It’s that time of year again for the AVM Awareness walk in San Francisco. This is the sixth year for the walk, and the third time I will be participating. It’s so very awesome that I have the opportunity to be part of this, to help raise awareness, to support my “brainer” AVM friends, and to be an advocate for AVM support.

A quick update about me. It’s just over six months since major resection of my AVM. Totally cool scars to prove it, and a much smaller face. I’m GORGEOUS! You can see just how gorgeous here!

But to be serious, I feel great. I know that I’m healthier and safer. The daily fear that I lived with for years is barely a thought at all. The pain that would attack…it just doesn’t often. And the scary bleeding episodes that would send me into instant panic are practically just a memory. I can’t explain the relief and sense of wellness this has been. And if that isn’t enough, I officially got an “almost done” on my chart with Dr. Yakes on April 7^th. This means that my monthly trips for alcohol embolizations are coming to a close. And while I’m hesitant to claim to be AVM Free…well I’m confident I’m pretty close to it and it’s thrilling.

It’s just over three years, and I can see the light at the end of the tunnel. And while my personal AVM journey may be coming to an end, I will always want to be involved, to support, and to advocate for this. The positive impact I have seen my story make is absolutely my biggest and best accomplishment. To know that my struggle, my perseverance, my totally ugly hospital photos, and my conversations with other AVMers has helped people, even just a little…there is no better feeling in the world. This hasn’t been an easy road for so many reasons, but the benefit, the goodness, the love; it’s all so very worth it.

So HELP ME OUT! I’ll even give you a hug... for $25.00!

We are currently fundraising for both TAAF and AVMSurvivors Network. You can find out all the details by visiting our fundraising site at www.indiegogo.com/avmsurvivors and making a small donation to support me. We have some great “perks” this year to show our appreciation for your support. And one of those perks is a hug from me. You know you want one! But we also have other very cool items to choose from. If no other reason head over to take a look at my super cool fundraising video. I missed my calling as a film maker. It might just be the best video ever. I promise I’m not making it up!

And please, help me spread the word. Post a link to the fundraising site on your facebook page or blog. Forward this email to anyone you think may be interested in supporting AVM and Aneurysm awareness, research, and support. There are many people affected by brain injuries each year (including my dad this past September) and everything we can do to help is great. I mean there really is no negative side to it. It really is ALL GOOD.

Thanks to everyone for the endless support you have always given me. People ask all the time how I can be so happy, so confident, and so “ok” with all of this. And really the answer is that I have always been loved by friends and family. I’ve been treated like a normal person, made to feel beautiful, allowed to just be me without having to apologize for the way I look. And THAT is 100% the reason that I’m able and want to pass that along to others. My “goodness” in all of this, my drive to help others, and my ability to actually do that comes from all of you and the generosity you have shown me in this life. You are all wonderful and I love having so many special people in my life.

Now seriously, go see my video! www.indiegogo.com/avmsurvivors

And if you'd like to join me in SF on May 1st, register here http://www.aneurysmfoundation.org/ev_walk6.html

xoxo

Shalon

Yummy Cupcakes!

2010-09-19T17:29:00.000-07:00

I'm so happy with the "turnout" for my Cupcake party, both far and near. And according to Nicole "Cupcake to the Rescue Day" is actually a new holiday, and her favorite! She ate her cupcake for breakfast. I'm totally on board with that. Also, keeping the "spirit" of today going, my blog post announcing the cupcake festivities was featured on the new Ben's Friends blog. Go take a look and book mark that page!

After a very early morning (3:30 wakeup call) flight and arriving in Denver, we made a quick stop for pre-surgery blood work, and then straight to Lovely Confections to pick up my yummies!

I was so excited and they looked great! All mini (not as mini as I'd imagined at all) and pink and sparkely! Exactly what I wanted for my Cupcake party. Couldn't leave without getting a close up of the Strawberries & Cream pretties. How great do those look?

We had some great friends, both new and old, meet us at the park to hang out, eat cupcakes, and to wish me well. There were four Yakes patients today. Me & Arie as current patients, Steph & Danine as former patients. It was very cool to know all of these ladies and to be able to meet up with them and all of the other wonderful people who support us and for today, support me.

And fine, I admit it, we DID mostly eat the cupcakes before the other more lunch "suitable" foods. But what the heck, this is a party and I get to make up the rules right? So after admiring the pretty cakes and taking lots of pictures of the them proudly displaying "AVM Supermodel" we dug in and enjoyed the taste as much or even more than the look of them!

And I've received some great pics of more friends joining in on the celebration. It's totally awesome to see everyone supporting me in such a sugary, spectacular, and heat warming way.

Morgan seems to like hers!

I think Taylor is excited to eat this one.

Beth with the biggest cupcake ever!

Toni chose a Sponge Bob theme

Lissa redid the frosting on these Sugar Free cakes. AND Lissa is where I got the idea of Cupcake Day. So please thank her for your sugar overload!

And to top it all off, our wonderful friend Becky did a special webisode of her online cooking show in my honor and made some great Carrot Cupcakes with Cream Cheese Maple Icing. So very cool.

Thank you to everyone for being such wonderful people in my life. Thank you for helping me celebrate this next step in my AVM journey and to keep me feeling positive and happy when I could very easily just be super freaked out today. Instead, I had a wonderful time with some great people and I continue to smile each time I hear that someone had a cupcake today and see the pictures of the lovely yummies they enjoyed in my honor. It's very cool and exactly what I needed! Tomorrow will be a little bit sweeter having the happy memories and the positive thoughts from today.

Love you all!

Shalon

Cupcakes to the Rescue!

2010-09-17T07:33:00.000-07:00

I'm getting ready for surgery on Monday. And yep, I'm a big scaredy cat and still super freaked out. So I've devised a plan to make it all better :) That plan is entirely all about cupcakes. Who doesn't love a little sweetness once in a while???

So we arrive in Denver on Sunday morning and I'm throwing myself a "Pre-Supermodel" Cupcake picnic. I've special ordered some from a local cupcake bakery, Lovely Confections, and have arranged for lots of sparkels, glitter, and pretty stuff. And a few chosen cupcakes will be special enough to spell out "AVM Supermodel!" I've invited all of the wonderful people I have met in Denver and who have helped me on these monthly trips to come eat cupcakes with me!

Lots of positive energy, fun, and well wishes I'm sure. And I know it will help me to feel happy and loved the day before this surgery. So be on the lookout for pictures and most likely a movie since it's my new found calling.

Wish you could ALL be there to enjoy my Pre-Supermodel Cupcake Picnic. What the heck, just buy yourself a cupcake and eat it on Sunday in my honor :)

xoxo

The end of my AVM Journey is near.

2010-09-04T13:44:00.000-07:00

We are almost there...the end of the road. This is what I've been working towards for the past three years, or really my entire life as far back as I can remember. And I'm scared. I'm nervous. And I'm oddly almost in "mourning" for this all to end, for the AVM to be gone. Honestly, I can't really wrap my head around any of it.

For the past few months, since April really, Dr. Yakes has been wanting me to have surgery to remove the coils in my face. These coils are there because they were used in vessels too high flow and dangerous to safely inject alcohol alone. But they aren't permanent in any way. And they need to come out. My friendly (most of the time) little facial wound, aka "the Warthog" is a direct effect of those coils putting pressure on my cheek and wanting to come out! And we have obliged a little with Yakes literally pulling wires out of my face during two embolizations. Crazyness for sure! For those brave souls who don't get grossed out easily, you can see some pics from the coil removal here.

So I've been meeting with docs. ENT's, plastics, blah blah blah. And we have been preparing for the coil removal. MRI's, xrays, consults, and lots of emails later we are ready to move forward with this next phase. I was calling it phase 1.5. But really it IS phase 2 out of probably only 3. We are practically done with the embo's and this surgery will be a huge step towards being AVM free. What I initially understood as simply a "coil removal" surgery has in reality turned into coil removal AND almost a complete excision of the remaining AVM. To say I was a little freaked out would be an understatement.

But I've talked with everyone, gotten past the few snags in communication and understanding, and we are now full steam ahead. Surgery will be on Sept 20th. Dr. Hepworth, Dr. Cote, and Dr. Campana will be the 3 musketeers for the day and while they don't appear to have any "superman complex" I really do hope they have super human abilities and that this will all turn out better than my expectations...

The surgery will be 12+ hours at Porter Hospital just down the street from Swedish. I'm a little bit bummed that I won't be at "MY" hospital but it really wouldn't have been the same anyways. It wouldn't have been my standard 3rd floor pre/post op area or the usual crew. Not even the same procedure room as this will be in an OR, not radiology. So onto a new place, new people, and a new experience. And I'm totally a creature of habit and comfortable in my routine. Josh will be with me, and his Dad will spend a few days with us to support Josh during my surgery. I will be in the hospital for up to 36 hours, spend the rest of the week in Denver recouping and then head home for a week off work. After that, apparently I'll be good to go! Hard to believe as it all seems so destructive.

So the plan is to remove the coils, remove most of the AVM that is left outside my jaw which is fairly close to the skin. Remove skin that needs to go due to the superficial AVM branches which really are clearly visible with the naked eye. There will be AVM left "inside" the jaw area which Dr. Yakes will treat with a few more embos a little later down the road. And that's the plan. Simple as can be, right?

Best case scenario- which we are all hoping for but I'm being pretty cautious in believing it realistic- will be for complete removal of coils and AVM tissue with no loss to my facial nerve function, skin just pulled and moved around a bit to cover any that is lost, minimal scaring and aesthetically pleasing results in general. No super model by any means, but no where near Frankenstein status.

Worst case scenario- complete removal of all the skin from my chin back to my ear, to just under my cheek bone. Loss of function to the nerves with loss of movement to my mouth and possibly my eye. Skin harvested from my back to replace that removed, which will not be a perfect color match but at least I'm a girl and can wear makeup! Muscle and nerves from my rib cage to help reanimate some of the function in my face. Not ideal, and much closer to Frankenstein than I had hoped for. But looks aren't everything. And it's not like I'm perfect now...

So ya...a tad bit freaked out. And although the "worst case" is probably NOT going to be the reality I am still glad to know what it is. Helps me prepare for what may happen and with luck I'll be pleasantly surprised.

The docs are all great, all very knowledgeable, and in general qualified. I say that because there really aren't many qualified AVM surgeons. So not many people have extensive experience if any. These guys DO have experience, although I would love if the number of patients were higher. Dr. Hepworth is the main doc and "in charge" of his team. He will be doing the removal of the coils and most of the actual damage to me. He has been working closely with Dr. Yakes for at least the past year and I personally know at least 2 of his other patients. Cyndi has already had a debulking surgery with him and he also put in her trach. She loves him. Dr. Cote is Super Plastics man and has extensive experience with military trauma, was the main consultant to the White House, and has worked on AVM's although admittedly much smaller ones. Dr. Campana is like THE Cancer Recon guy and has won "Best Doc" for many years in Colorado. He has worked on other "disaster trauma" reconstructions. He also will serve in the capacity of micro-vascular surgeon in the event that "rerouting" needs to occur. And I had Dr. Jon (my personal medical consultant!) check out their bio's and give me his opinion. It appears that we have dotted i's and crossed t's. But I'm still nervous and my control freak tendencies are ironically OUT of control. Dr. Hepworth is the unlucky recipient of that energy and has pretty much met my "bully" side...as much as anyone can believe I have one. However we have come to an understanding and now seem to be completely on track with good communication and a clear understanding of expectations from both sides.

So there it is. The end of the road is in sight and I know I'll make it to the finish line. I have to constantly resist my desire to just park the car and stop everything right here. But I can't do it as much as I want to. I've come too far and dedicated myself to this journey from that first trip to Denver nearly 3 years ago. This IS what I have been wanting and I have to just keep my chin held high, continue to be my own best advocate, continue to look at the big picture and not just this moment in time, and to really reach for that word "CURE" which is waiting for me across the finish line.

I thought taking that initial step into trusting Yakes was tough. I thought it was one of the hardest decisions I have ever made. And it probably was. But right now this one feels harder. Emotionally I just can't exactly figure out how to prepare. I can control small details of this, but really I'm just a passenger for this part of the ride. I have to let things happen knowing that the drivers are great at what they do and that we will get to the other side safely. That trust is so hard for me to freely and somewhat blindly give to someone else. But I trust Yakes completely. I trust his staff. And everyone feels like this is the next step needed and that these new docs are the right ones. So I'm leaping again, with trust and fear equally mixed together. I'm hopefully that when this is behind me I will be able to "see" that it was the right choice and I will be able to look back with a feeling of contentment, look forward with hope, and know that I will confidently recommend the same path for other AVMers that seek my advice and experience. Give me a few months, and I will know all the answers. For the next few weeks just ignore me if I bust in to tears for no apparent reason :) Or better yet, give me a hug cause I like them and they make me feel better!

Super Scaredy Cat Shalon

FUN and...Not so Fun stuff!

2010-07-29T17:41:00.000-07:00

So the FUN part first! Of course :)

This past weekend was a blast! We went down to SF for the day to make a film for the Life in a Day contest on You Tube. And what would my life in a day be? Well, it would be doing something with the two things I am currently most passionate about! Spreading AVM awareness through promoting Bens Friends Patient Communities, and of course Feel Good Gowns!

As you all know I’ve been very involved for the past two years with AVM Survivors Network. And through this I have met some truly wonderful and inspiring people. One of which is Ben who first started this online community after suffering from a Brain bleed due to his AVM. Lucky for him (and all of us) he fully recovered and reached out to help others facing this scary malformation.

And with the success of AVMSN Ben, along with his friend Scott, decided to start more communities helping people facing other rare diseases to find support and information and that sense of “community” that is such a relief to patients. And this endeavor has just continued to grow and to do GOOD. More people have jumped on board to help them and I’m lucky to have gotten caught up in it somehow! Currently with 15 patient communities and over 8000 members, Bens Friends is making a difference and looking to double by the end of the year. With so many super smart and super caring people heading this up, I have no doubt that this goal will be reached!

The chance to promote Bens Friends through this little video was awesome and allowed me a “date” with two of the cool kids involved. We met up with Eric & Scott at Fort Mason’s Great Meadow. With the GG in the background we each filmed little monologues about why we were there, what Bens Friends was, and our involvement with it.

And then it was time for a photo shoot for Feel Good Gowns! I was able to get a super nice photographer, Eliana Baron, to come up to the city and do our shoot for basically free! Thanks to Amber who totally networked and made it happen for us all in two days. You’re a gem my friend :) So Eliana and hubby Mauro met us at the park and couldn’t have been nicer or more excited to be part of the day! With such short time frame I had a hard time rounding up some models as everyone already had plans. Forced to model myself, I was glad to have one of my besties Carrie there with me, and so very thrilled that Scott brought his beautiful friend Vanessa to sacrifice to the cold, the wind, and the very thin cotton gowns!

We had such a great time as the “three Model-teers” and I know we got some great shots. And so did everyone else in the park each time a wind came up to make my “no flashing” gowns a little more flashy than we would have liked! Oh well. Even the boys got in on the shoot with Scott, Eric, and Josh modeling some of the scrub caps I had brought.

All in all it was a great day! And you can see a preview of the pictures and read a little more about the shoot over at my Feel Good Blog.

So on to the NOT so fun news…

Surgery is scheduled to remove the coils. August 18th I go back in for an embolization with Yakes. And then on the 19th I have surgery with Dr. Hepworth, Dr. Campagna, and Dr. Cote to remove all of my inner bling. Those platinum coils that are now what you see as the “bulk,” what has caused the warthog, and which are trying to escape on their own are coming out. I still really am going to tell them I want the platinum to melt down into a keepsake bracelet. For reals! I’m thinking I’ll have a little charm made of a warthog to remember him by.

I’m super scared, absolutely nervous, but very hopeful. Trying with everything I have to focus on that last part. But it’s hard. We’ve all prepared the best we can and I know the docs are capable, cautious, and without any Superman complex. I feel good about that. But they couldn’t get any of the images they wanted to be able to prepare. They can’t “see” anything in an MRI or any other films because the coils ruin the image. So they are going in somewhat blind. But it’s necessary and they have prepared the best they can. They are confident in what they can do while absolutely aware of what they don’t want to do or don’t want to get involved with. And that’s the best we can go with.

That's the scoop! Phase 1.5 is under way. This surgery isn’t meant to be reconstructive or leave me as the Super Model that I’m anticipating ;) It is just to get the junk out and to let Dr. Yakes continue with the embolizations until he feels that he has gotten everything. When he says we are done, then I’ll go back with Hep & Cote to work on more debulking and ultimately the aesthetic part of this entire journey.

Wish me luck for next month and keep your fingers crossed that my new docs prove to be just as very awesome as I think they are!

Shalon

Next Phase is starting!

2010-06-22T12:45:00.000-07:00

Wow, it's been forever since I have updated this blog. Time has flown by this year and I can't believe that it is already half way over. The good thing is that this typically means that things are going well. And they have been!

I've still been making my monthly trips to Denver, trying to update my website with pictures at least if not "trip reports." And I've been dedicating most of my "free" time to Feel Good Gowns and everything that goes along with getting my super fabulous little company up, running, and google-able!

We also participated in the AVM walk this year in SF and I was lucky enough to meet some new AVMers (including Ben) and also hang out with old friends. Good day all around for sure.

As far as my AVM...well it's been rather quiet in general. A few bleeding episodes and the Warthog is still unhappily hanging around. We did have some unexpected removal of some coils earlier this month (totally weird) and really that is where we are headed in general. The next phase is starting and the first step is getting all that metal out. (I'm going to post pics of the impromptu coil removal party on my website, but they are just a tad too graphic to throw into this nice little blog post!)

So this is where my anxiety comes back full force. I'm totally a control freak and a worry wart. And changing the routine sets me on edge. But add in new doctors and a general "unknown" element for me and I'm a total basket case masquerading as someone completely in control of things. It's tiring to say the least.

It could be as early as mid July when I have surgery to remove the coils that have been bulking up my cheek and my chin over the last few years. Granted, the bulk didn't get much bigger per se, just replaced the AVM vessels and high blood flow with metal and scar tissue. And that's all very good! I'd much rather have that "crap" in there than healthy, viable, blood flowing, happily aggressive AVM vessels.

I'm super nervous about the surgery. All of the regular fears about how the AVM will react, how well the surgeons will be able to do what they need, & what this will ultimately "do" in the overall picture of eradicating this beast. It's all very unpredictable in certain ways and absolutely scary for me. Surgery has been the one thing all of my docs over the last 25 years have warned me against. Why? Cause it's hard to "get" all of the AVM from a surgery. It's hard in extremity AVM's where the beast has invaded tons of areas and has all of these little feeder vessels and new side shoots and tiny peices. Becomes a tangled mess of stuff that is hard to identify it all as AVM. And when you cut into it, piss it off, and then leave little parts...it tends to retaliate and grow back with a vengence. That's the part I'm most fearful of at the moment.

And of course there is the superficial part that I wouldn't be human if I didn't worry about. How will I "look" when this is all done? Supermodel...not quite. Edward Scissorhands or Frankenstien...maybe not exactly. Hopefully the reality will be just a little worse for the wear from how I look today. One of the team is supposed to be a super duper Plastics with tons of experience (not AVM's though!) reconstructing people. Previously a big guy at Walter Reed in DC. Tons of letters behind his name to tell me he is smart. And I like him. He admitted to having a cautious approach which makes me happy. But it boils down to this- I'm just not looking forward to this step, I don't feel confident in what the outcome may be, and I don't really know any of the docs doing the surgery. So I'm stressed out and all doom & gloom.

Tomorrow I'm having an MRI/MRA so that the docs can get a better idea of what is really in store for them. I'm dreading being confined in that little tube for over an hour. It's not exactly clausterphobia that has me, it's more the loss of control and the inability to quickly get out of that tube if I was to start bleeding. So I've asked Kelly to give me some Valium like a high maintenance girl! Josh also has to play chauffer because of it. :)

And like so many of my friends and family have told me, this will probably all work out just fine. This is just my regular MO. I freak out until I have "proof" that everyone is competent and that I can trust things to be ok. I come up with all the worst case scenario's and am then blissfully pleased when those don't actually happen. I become Anxious Annie everytime at the beginning and then I'm fine from there on out until something else happens to make me nervous. And honestly that's pretty accurate. I can't deny it. I AM a control freak and super high maintenance when it comes to all of the health stuff. But that's ok. It's also why I'm my best advocate. It's why I have researched so much and gathered the information that has allowed me to help other people on their AVM journeys. It's the reason that I can understand much of what is happening without that pretty medical degree. It's why I've made good decisions thus far and why I should trust myself now. However, at the end of the day I'm still Anxious Annie, I still don't trust other people, and I'm still super freaked out about it. Sign...I'm so high maintenance even to myself :) Gotta love me!

Shalon

MIA for a good reason...promise!

2010-03-13T11:26:00.000-08:00

I know I have been terrible at updating my blog and my website. But I've got a good excuse! All of my free time (the little that I have) has been used to get FEEL GOOD GOWNS up and running. And I am almost there! Really, just waiting on the last little item, my merchant acct to go live, and then we will be in business!!!

But I did actually update my website today...at least the picture pages! You can see all the updates here. And I hope to at least update my trip report with this latest trip, and then catch back up on the Oct-Feb trips.

March marked my 25th Denver embo, and my Silver Anniversary with the Swedish team. I can't say enough about everyone there. They are all so great from start to finish. From Sadie in the office who is such a help with scheduling, coordinating little gifts for my friends, and all of my other weird requests, to Kelly and Eric the Super PA's, all of the nursing staff both pre and post op who take such good care of me, to the Radiology kids and the Anesthesiology docs who are all ready to show off my cap creations, to of course the big guy himself...Dr. Yakes who was the recipient of a super cool flames cap this trip! I feel so well taken care of and loved. It's sometimes hard not to actually look forward to my trips to Denver...

So be on the lookout for an announcement for FEEL GOOD GOWNS soon. I can't wait to share this with everyone!

Shalon

Yikes! It's been so long...

2009-12-23T09:42:00.000-08:00

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!

Two Year Anniversary!

2009-09-26T09:10:00.000-07:00

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.

-Opportunity. 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.

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

2009-08-27T21:41:00.000-07:00

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!

Shalon

Video to spread awareness

2009-08-11T17:57:00.000-07:00

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.

Thanks!

How time flies!

2009-08-05T11:05:00.000-07:00

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!

Why is the sun out???

2009-07-08T10:22:00.000-07:00

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!
Shalon

Back from Trip #15 in Denver!

2009-05-10T15:51:00.000-07:00

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 :)

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

2009-05-04T10:00:00.000-07:00

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

We Walked for AVM Awareness!

2009-05-03T20:20:00.000-07:00

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.

Shalon

AVM Awareness Walk

2009-05-02T21:53:00.000-07:00

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!!!

Shalon

AVM Survivors Network

2009-03-22T08:43:00.000-07:00

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!!!

Update- AVM Awareness Walk

2009-03-17T15:33:00.000-07:00

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!

Shalon

Please sign Andrew's guestbook

2009-03-11T18:04:00.000-07:00

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.

http://www.caringbridge.org/visit/andrewbrown

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!

Thanks
Shalon

Denver Trip...Lucky #13!

2009-03-07T11:16:00.000-08:00

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!

Walk with me on May 3rd!!!

2009-02-23T13:26:00.000-08:00

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

2009-02-16T16:52:00.001-08:00

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

2009-01-22T11:18:00.000-08:00

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

2009-01-19T21:21:00.000-08:00

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

2009-01-17T22:47:00.000-08:00

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

2009-01-12T11:09:00.000-08:00

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

2009-01-10T19:12:00.000-08:00

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!

Snow Trip to Ice House

2009-01-03T21:45:00.000-08:00

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.
Shalon

Hello 2009...Goodbye 2008!!!

2009-01-01T09:13:00.000-08:00

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!
Shalon

Cyndi is Superwoman!

2008-12-12T12:48:00.000-08:00

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!

Hope

2008-12-11T09:54:00.000-08:00

Hey everyone.

First of I want to say that I am feeling very well. I know that my recent blogs haven't been as "sunshiney" as I normally am. But I know you all understand. I am over my recovery, over my cold, and back to being Shalon.

Some good news, Nathan is still fighting. He may have suffered some serious damage but with this kid, you have to think that he will overcome anything that happens. He has been through so much in these first 10 months, and yet has always suprised everyone and come out on the positive side of the ugliness. Here is the most recent posting by Jaimee. Please continue to hope for the best.

Camellia was in yesterday for another embolization with Dr. Yakes. Everything went well and the lucky little girl got to have Gelato for dinner!!! You can check out the latest journal entry from Margie at her Caring Bridge site. (Permanent link is over to the right.)

I've also updated my picture page on my website and this blog with a link to Maddy's new Caring Bridge site created by her mom Sherri. Please check them out.

This morning I read a posting on Camellia's site from their friend Beth. She added a link to a website called Peace of our Minds, and the following peaceful passage.

'An elder Cherokee Native American was teaching his grandchildren about life. He said to them, 'A fight is going on inside me...It is a terrible fight, and it is between two wolves. One wolf represents fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, pride, and superiority. The other wolf stands for joy, peace, love, hope, sharing, serenity, humility, kindness, benevolence, friendship, empathy, generosity, truth, compassion, and faith. This same fight is going on inside of you and every other person too.'

They thought about it for a minute and then one child asked his grandfather, 'Which wolf will win?'

The old Cherokee simply replied...'The one you feed.'

What a great peaceful passage. I will take this to heart and try my best to only feed the wolf that stands for all of those wonderful things that I want as part of my life. The other wolf hopefully will starve!

I hope everyone is enjoying this holiday season and that you will get to celebrate with family and friends this year.

xoxo
Shalon

Very Sad News

2008-12-07T08:37:00.000-08:00

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

Lot's of updates!

2008-11-29T12:20:00.000-08:00

Hello everyone!

I hope you all had a wonderful Thanksgiving holiday. I know that I have many things to be thankful for, including all of our friends and family that continue to be so supportive of Josh and I through this AVM journey!

I have many updates today. :)

My Trip Report is up on my website for Trip #10.

Added a couple of pics to my Timeline, as well as to the Meeting Cyndi slideshows.

More photos of Nathan "our miracle baby" have been added.

I've recently been in contact with Arie and her mom Jody, another Yakes patient, and have updated with pictures of this beautiful little girl and a link to her story. I'm so jealous of all of her freckles!

Also, check out Cyndi's blog to read about her most recent adventure in Denver!

I think that is it!

As for me, I'm finally starting to feel like myself again. Still not quite 100% but I'm doing well and feeling much better. Josh has been taking care of me and you all know how much I enjoy being spoiled by him!

Hope you all have a wonderful day!

xoxo

Nathan's Craniotomy a success!!!!

2008-11-27T14:48:00.000-08:00

What wonderful Thanksgiving news! Nathan's surgery yesterday was a success and he is doing well. I'm so happy for this beautiful little family and it is such a reminder that we have many things to be thankful for in our lives. Not everything is easy or the way we want it to be, but even in struggles and hardships there are great things that happen!

Here is the latest post from Jaimee on Nathan's progress!

http://www.avmsurvivors.org/profiles/blogs/happy-thanksgiving-thank-you

Trip #10...not my favorite!

2008-11-24T18:11:00.000-08:00

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!

Please keep Nathan in your thoughts and prayers!

2008-11-23T08:41:00.000-08:00

Nathan is a little baby who is dealing with multiple AVM's in his brain. Earlier this year, they thought they had treated it completely. Unfortunately he has suffered a set back and is at UCSF with a pretty ominous prognosis.

You can read about his story here. http://www.nathanj125.com/ and the latest news about his condition here http://www.avmsurvivors.org/profiles/blogs/ominious-prognosiswe-might

What a difficult situation for this family to find themselves in. I really would appreciate all of the prayers, healing thoughts, whatever you can send to Nathan!!!

Another AVM survivor

2008-11-16T08:19:00.001-08:00

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...

2008-11-01T11:14:00.000-07:00

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.

AVM treatment #9!

2008-10-28T18:04:00.001-07:00

Is that kinda like "Love Potion #9?" Well....maybe not so much!

We are back from our 9th trip for treatment with Dr. Yakes. Everything went well and I'm feeling great. I've posted my Trip Report on my website with all the fun details about our time in Denver. I'm most excited about the new pre-treatment "treats" I'm planning on giving myself with the opening of Dr. Reed's new Spa!

After taking care of the AVM stuff, we were lucky enough to have time to take a drive up the road to Berthoud Pass. It was a nice Saturday morning and I felt good enough for a quick little trip. It was definately a change from just rushing in and out of Denver. We hope to be able to do some more "relaxing" exploring as we make our future trips for treatment.

The drive was roughly 75 miles each way and we drove through some beautiful country. Unfortunately we did miss most of the colors of the Aspens, but were able to see some brilliant yellows and oranges on those still hanging onto their leaves. At the top of the Pass was the Continental Divide so that was a fun little landmark to take a quick picture. We didn't have a real camera with us, so these pics are just from the iPhone...but not too bad considering! Next time we will have better pics.

Some of Josh's LC friends told us to stop in a tiny town called Empire for ice cream. I was looking forward to that, but when we arrived, the entire town was closed down for "Scarecrow Days" and I didn't get any ice cream! Meanies!

We arrived home Saturday night and I've just been trying to take it easy, rest, and let myself recover. But you all know that I'm not always as good at doing that as I intend! I'm trying, promise! Josh is of course the best husband ever and takes care of me all the time. He is right now making me dinner since I was just gonna go with Halloween Candy for the night! How sweet is he to make sure that I get real food?!?!?

Hope everyone is doing well. As always, I sincerely appreciate all of the kind words, well wishes, and support. I do tell people all the time that I have the best family & friends...and I actually believe that is true! I couldn't remain as positive and as confident in this journey without all of those surrounding me and keeping me where I need to be.

Hugs & Kisses to everyone!!!
Shalon

Off to Denver again!

2008-10-22T21:55:00.000-07:00

I'm sticking to the 4 week schedule and am on my way back to Denver. Josh and I leave tomorrow morning and are trying to decide what kind of "winter" clothes to pack for the cold weather. The forecast is for a high of 50 and low of 27 tomorrow in Denver, as opposed to the high of 85 and low of 52 here at home...Yikes! I'm gonna have to bust out the snow gear or something. (This pic is from last winter when we drove up to Ice House Resevoir to let Huddy play in the snow. I'm thinking of finding that hat and matching mittens!)

We are going to be seeing Dr. Reed at a different office than the normal DT Denver one and I'm all ready to give my report on his HGTV show! Then we are going to meet up with Steph and fam in Denver for dinner at a yummy vegetarian restaurant! Poor Joshie, forced to eat tofu!

We hope to take a nice drive and see some pretty fall scenery on Saturday before heading to the airport. We'll see if I'm up to it, or just a sleepy head.

No internet at the condo, so I'll probably post up Saturday night or Sunday morning once we are home!

Shalon

New Pics of Keith!

2008-10-21T22:01:00.000-07:00

Keith had his most recent surgery on Oct 6th. basically cosmetic and reconstructive, they were able to "fix" some areas that were not symetrical and have also reduced the scarring. Apparently Dr. Waner uses some type of laser treatment to help the scar blend in with the normal tissue.

Anyways, the results look wonderful. While Keith has some nerve damage that has cause him some issues with his eye, and also being able to smile... I think the difference in appearance is amazing. In some of the pictures, you can hardly tell that the AVM was ever there! What more could you ask for?!?!?!?

Here is a great picture of Keith after the latest surgery. To see his entire timeline, check out his pictures on my website.

Trying not to worry...

2008-10-18T11:33:00.000-07:00

I've been super happy for the last few weeks because my lip is finally healed. It was an entire year of dealing with this wound, pain, and bleeding. Not having to deal with it anymore has made me feel like a "normal" person again!

But the last few days I've had slight bleeding inside my lip. Not really a big deal, but it is making me just a tad nervous. I can't really decide what is going on. There is no cut and it doesn't really look like tissue breakdown. But the skin itself is all weird and different from scarring. I don't know. I just hope it doesn't get worse. I like being normal!!!

On a more positive note, Huddy has been super lovey dovey with me this past week. He typically is more interested in Josh than me, but he was waiting in the window when I came home last night, and then ran over to give me hugs when I walked in the door. What could be better than hugs from your doggy???

Dr. Reed's turn in showbiz!

2008-10-13T14:25:00.000-07:00

Dr. Reed's episode on HGTV's new show "My Big Amazing Renovations" premiers tonight at 9:00 eastern time!

For those of you who aren't sure what I am talking about, Dr. Reed is the ENT that sees all of us "head & neck" AVM-ers before each treatment by Dr. Yakes. He makes sure the airway is good to go so that we can breathe during & after treatment!

He somehow managed to get himself involved in this TV show when he did a "small" remodel on his home in Denver. I've promised to give him a full recap of how they spin his story and how correct of a portrayal they do of him. So I've got my notebook handy for tonight and will be reporting back to him next Thursday when I'm in Denver for round #9!

If you miss the episode, don't worry they are going to replay it 4 other times during Oct & Nov!

It's all good!

2008-10-11T23:22:00.000-07:00

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!

2008-10-05T21:03:00.000-07:00

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

Trip #8 down!

2008-09-27T18:47:00.000-07:00

Just got back from Denver and have now completed 8 trips. So I'm well on my way to being AVM free. The trip went well and I'm feeling strong. Just a minor amount of swelling this time, but lots more "hard" area's in my cheek. It is probably the weirdest part of this treatment...to end up with hard areas. And then those areas sorta stay looking swollen. But whatever, I seriously could care less about that and it will eventually all go away with plastic reconstruction.

I've updated my website with Trip #8's report and all the details including my H3 experience, and Dr. Reeds fun venture into Showbiz!!! Yes, he really is going to be on TV and I'm ready to give him a full report on my next trip in October!

Again, a super huge thanks to Jenn Astwood for letting us stay at her Condo, and to Herdis for meeting us for the key exchange!

My lip is now totally healed! Yay! Just a little unstable, but no more wound. It is so nice to be able to actually put some chapstick on and rub my lips together like a normal person! Not to mention Josh can finally kiss me again! :) I guess that should have been the first thing I listed... :)

Thanks for checking in and reading my blog and website. I really do appreciate all of the support.

Andrea's AVM story!

2008-09-12T21:07:00.000-07:00

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!!!

2008-09-11T21:02:00.000-07:00

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!!!

2008-09-05T20:22:00.000-07:00

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.

Camellia's AVM

2008-08-31T08:59:00.000-07:00

Just wanted to post a link to a website for Camellia!

Camellia is a beautiful little girl with a facial AVM. Her story has many similarities to mine as a child. However, it sounds like she is having a rougher time than I did at that age. But luckily, she is already being treated by Dr. Yakes and although this treatment is hard for such a little girl, I hope that it means Camellia will grow up healthy, happy, and AVM free!!!

Camellia's mom keeps an online journal detailing their journey and treatments. Please visit her site and sign her guestbook!!!

http://www.caringbridge.org/visit/camelliaschaner

Keith's pictures are up!!!

2008-08-28T19:13:00.000-07:00

Timeline pics for Keith are up on my website. Here is a quick preview...

If you have forgotten his story, check it out in my earlier blog post titled "Another Facial AVM" dated 8/5.

Angiogram screen shots

2008-08-26T10:20:00.000-07:00

I updated my picture link with new screen shots of the Angiograms for each of my AVM treatment's through July.

Totally weird and it looks like the metal coils are just "floating" in my face. But really that is the big "tangle of spaghetti noodles" that is the AVM and the coils are all smushed into them!

June's treatment is like inverted with the dark/light stuff. Kinda fun compared to the others...

I actually have the entire series of pictures which shows the dye going into the vessels and progressing through. But I'm not exactly sure how to get that into a "movie" that you can see. Anyone with technical expertise that wants to help me??? I only pretend to know what I'm doing. ;)

And a bunch of the coils are made of platinum...maybe when this is all done I can melt it down and make a keepsake bracelet!!! Would that be weird?

Shalon

Fries on the brain...

2008-08-24T21:38:00.000-07:00

Totally off topic...

Josh & I did a day trip to SJ yesterday for Morgan's first birthday party. It was nice to see our Hubbards since it has been like 10 months! Yikes!

Anyways, it became apparent only a few miles down the road, that my husband was craving fries... Seriously you should all know that EVERY song on the radio can have it's lyrics adjusted to somehow include a line aboout "with fries." And even better...curly fries!!!

It got so bad even I was chiming in with the fry lyrics... And yes, we do realize we are total dorks!

I challenge you all to try it next time you are in the car and can sing to yourself... it's a full proof theory, promise!

Cyndi's timeline

2008-08-22T22:11:00.000-07:00

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!

2008-08-22T16:53:00.000-07:00

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!

2008-08-21T20:40:00.000-07:00

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!

Denver here we come!

2008-08-17T21:37:00.000-07:00

We are heading to Denver on Tuesday and I will have treatment #7 on Wednesday. Josh is coming with me, so I'm sure he will keep the "regulars" in the loop by email. I'll try to post up here Wed night or Thurs morning, and will add an update to my "Denver Trip" page on my website soon after that.

We had a hard time getting a hotel this trip! Apparently the DNC is using up all the rooms everywhere even though it isn't until the following week. Room hogs!

If everything works out, we will be meeting Cyndi (another Yakes patient) on Tuesday! We've been emailing for the last few weeks, and it just so happened that our next treatments were the same week and we will be in Denver at the same time. So that is fun! We will be sure to get a picture together and I will post it up here. I'm sure Cyndi will post on her blog too...if she ever gets it going!!! :)

Moving!!!

2008-08-15T10:40:00.000-07:00

So I'm going to try to be cool and have this real blog as opposed to the "fake" one I had on my website (since google sites doesn't let you have one...dummies!) I'll link to this blog from my site instead.

I hope it will allow people to keep better tabs on me and my story. The previous posts have all been added on here with a note about "original post date."

Please subscribe to my blog so that you know when I have updated!

Random place for my website to show up!

2008-08-14T10:35:00.000-07:00

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...

Thanks!!!

2008-08-12T10:33:00.000-07:00

Just wanted to say a quick thanks to eveyone who participated in our fundraiser this weekend. It was a perfect weekend for our goodies. Not too hot (like it can be in Sacramento in August!) but just warm enough to make our summer time treats hard to resist! We sold lots of popcorn and snow cones and handed out quite a few "business cards" to help spread the word about my website. I really appreciate the donations we have also received from both friends and strangers. It is so wonderful to have so much support!

Also, wanted to say a special thanks to Carrie, Jenn, & Danielle for organizing and running this event! You ladies are the best. xoxo

A little less scabby today

2008-08-06T10:29:00.000-07:00

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!

Another Facial AVM

2008-08-05T10:30:00.000-07:00

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.

To blog or not to blog

2008-08-05T10:25:00.000-07:00

So I'm totally annoyed that Google Sites doesn't allow you to have a REAL blog on your site. I'm thinking of ditching this fake one and just linking to a blogger site. Plus maybe that will help spread the word a little more, since there would be another place for people to "find" me.

I have been talking with a lady in TX, Cyndi, who has a facial AVM and is being treated by Dr Yakes as well. I bullied her into letting me create a blog for her so that she can post updates about her journey. Once it is ready to go I will link to it as well for anyone who is interested.

Website is all up to date!

2008-08-02T10:24:00.000-07:00

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

Hole in my face!!!

2008-07-29T10:24:00.000-07:00

So ya...the new wound on the side of my face has a hidden bonus!

I actually have a hole going from the inside of my cheek all the way to the outside where the scab is. Grody! And it's infected...again. I'll spare you all the seriously gross details but let's just say that this is not my favorite new manifestation of the AVM. Otherwise I'm feeling pretty good. A few bleeds over the weekend, one more concerning than most. I saw my dermatologist yesterday (I haven't seen her since April) and she was very excited about the change in my face and lip from the embos. She said she could definately notice the decrease in size and that the coloring was looking better. So that was great to hear!!!

My first blog

2008-07-23T10:21:00.000-07:00

So this is my first post for my new "blog." And the entire point is to tell you all how I am feeling and coping with the AVM and treatment. I promise that no other updates will be this long! But as the first post, there is a lot to tell you!

I’ll start out by saying that six treatments into this journey with Dr. Yakes, I have realized that I was not prepared for all that this would entail. I thought I was totally capable of continuing life as normal and doing these treatments as often as my life would permit. I was going to fit it into my schedule and make it work on my time. For those of you who know me, you know I’m just a “little” bit of a control freak and perfectionist. And by little, I really mean a lot. So even though I knew that once I jumped into and commit to this endeavor that it would impact my life, I really thought I would be able to control how much of an impact it was going to be. But this AVM has a mind of it’s own lately and has completely humbled me and shown me that I am not the Super Woman that I thought I was, and that control was something I had to accept was not going to be mine.

I’m feeling pretty good right now as I type this. Sure I look like a poster child for domestic abuse and I’m rather afraid to be out in public due to the continuous fear of bleeding, (like at the grocery store the other day...how unsanitary is that?!?!?) but I feel rested and stronger than I have in a long time. If I had written this only two months ago, it would have been a completely different tone and a completely different story. May 20th was when things really fell apart for me. It had been coming on for a while, but that was the day that did me in.

For months I had been in a lot of pain. The most pain on a continuous basis as I have ever experienced. I was taking Tylenol like it was candy, knowing that this excess was bad for my kidneys. But that was the least of my worries and at least something that I could joke about. I couldn’t sleep and I was run down, seriously. This was in part due to the pain but also because I was afraid of bleeding in my sleep and not knowing. See the wound on my lip continued to deteriorate and I began to have bleeds directly from the wound. My previous bleeds had all been inside my mouth. As gross as that is, I would wake up at the taste and could take care of the bleed. But now I was worried that I wouldn’t know. That I wouldn’t wake up and that I would lose a lot of blood before I was aware.

But I soldiered on, cause that is what I do. I tried not to let it affect me at work and I tried not to really let on with my group (I manage 14 employees) how much pain I was really in and how much this was really wearing me down. But they could tell, and they were worried. No amount of parading around in new high heels (really I don't have a shoe problem) was going to distract them from noticing the change in me. I didn’t want to show my weakness but also was grateful for the genuine concern that I got from them on a daily basis. I really only shared my struggle with a few people at work, including my girlfriend Janine. She was the person that helped me through my scary bleeding episodes at work. And it was her that started trying to convince me that I needed to take some time off from work and focus on my health. But that would be admitting that I wasn’t capable of doing everything and I just wasn’t ready to admit defeat.

Then May 20th rolled around. I was actually only working a half day because I was headed down to UCSF to meet with the Chief of Plastics to get an opinion on what to do about my lip! All of my trips to the dermatologist had not provided any real results and she had finally decided that she just didn’t have the expertise to deal with the AVM aspect of my wound. But before I could even make it halfway through the day, I had a bleed at work. And this one was super scary, not to mention embarrassing. I was talking with a vendor in the lobby and literally had to run away from him as blood started pouring down my face. I ran to the bathroom but had so much blood on my hands that I couldn’t get the medicine cabinet open to get some gauze. I busted into our training center where I knew Janine was in a meeting and she ran to help me. Of course I was able to stop the blood flow, but the bathroom was a mess and we basically had to “quarantine” it until it could be cleaned up. I was shaken and embarrassed and just unhappy.

Josh came to get me, and we headed down to the city to meet with Dr. Hoffman. Unfortunately my day just got worse as he recommended that in order to close the wound, we do surgery. He suggested cutting a chunk out of my lip where the wound was, treating some of the AVM tissue in that general area, and then hoping the new wound would heal up. We talked in length about potentially just going in and cutting out the AVM altogether. I was honestly devastated. I didn’t want to do a surgery. All of my doctors up until that point had warned against trying to surgically remove the mass. I was worried about the amount of AVM flow in the area and what kind of can of worms would be opened during surgery. I worried that there was too high a risk for blood loss and damage. And I couldn’t logically understand how creating a bigger wound than I already had was going to instigate healing. I was scared and tired and just confused.

I took the next day off from work, and the next. I talked with Dr. Hoffman by email, and I talked with Rhonda, Dr. Yakes PA, over the phone. I decided that I did not feel like surgery was a good option. I was scheduled for another trip to Denver the first week of June and decided I would have Dr. Yakes treat my lip specifically and hope that he could reduce the AVM activity, thus restoring some of the normal blood flow to the area and hopefully healing would then be an option. I also began my search for a Hyperbaric Oxygen facility that would see me. And as much as I hated to do it, I talked with my boss and with HR about arranging a LOA from work.

I felt very guilty about just “ditching” my group out of the blue, but there was no way that I was strong enough physically or mentally to go back to work. I went to Denver in June, and again in July. Both treatments focused on my lip. And I started HBOT (hyperbaric ox) daily M-F. The bleeding episodes are way down and much less severe than they were. And the pain is much more manageable. Some days I’m not in pain at all. The wound on my lip is still ugly but I am finally convinced that it is healing…slowly. Unfortunately this last treatment in July created more tissue breakdown on the side of my mouth. So I now also have crazy, ugly wounds all scabbed up there too.

But I’m focusing on me and my health. I am not worrying about anything else and I think it makes all the difference. I can feel that I am healthier and better prepared to deal with the non-healing wound and the embolizations. I can feel that my body is ready to work and fight to get well. I wanted to be the perfect “sick” person. I wanted to prove that I was capable of doing everything. But I wasn’t. I’m not. And I know that it doesn’t make me less of a person, or a failure. In fact, I am more proud of myself now for admitting when I needed to take a break. For knowing that my health was more important than my Super Woman status. For finally deciding that “I” was important enough to be my sole focus for now.

So I’m feeling good. I’m not great, and I think I will have some more stumbles along this journey. But I’m looking down the road to when I defeat this stupid AVM. To the time when I won’t have to worry about this on a daily basis. A time when I won’t wake up in a panic when my hair accidentally tickles my face. A time when people won’t look at my wonderful husband like he must be abusing me! I’m excited to have there be an end to this. I know it is a long way down the road, but it’s there. And I’m holding onto it.