HOPE

Hey Ashley!

Totally understand.  I get it 100%.  And absolutely no reaon to apologize for venting.  As you said, who better to understand than me?!?!?  You can't understand unles you live this.  Family and friends love us absolutely, but they don't get it unless they make those trips to Denver and experience this first hand.  So feel free to email me whenever you need.  Seriously.

And this email is going to turn into one of those long winded one's for sure.  I'm a wordy girl and don't know how to edit!  :)

So in general here is what I think is the reason for the silence- It's hard to give updates because people take them as absolutes.  It's hard not to!  And the fact that the AVM/VM is constantly growing and changing makes it hard to project an end date or even come up with the % until you ARE close to the end.  You could say 50% now and then in 8 weeks the beast could have had a very active spurt and set you back to 30% or whatever.  Because it isn't static...It almost seems like a "guess" to give updates that way.  Also I think with kids it is harder because THEY are growing as well and this can absolutely impact the growth of the VM. 

I'm sure he has probably gotten burned in some way by expectations he inadvertenly gave people.  Maybe he has just recognized that it's better for people to not know the status, than to think they are close only to have to backtrack.  You know what I mean?  That could be devestating.  Even with some of the people that are "done" the end totally dragged out.  Allison from Alaska, the Amazon supermodel went probably 4-5 more times with the "this might be the last one" but kept ending up with "come see us again next month."  Just that was frustrating and I can imagine how people internalize and grab onto a date or a progress status earlier and would be very disappointed.  Is it better to be in the dark?  I don't know the answer to that but it seems like Yakes has decided through experience that this helps with the emotional and psychological aspect.

Having said all of that, it does totally suck to be in the dark.  I won't argue that at all.  It's hard to keep going back all the time and torturing ourselves (or your child!) when you don't know if it is working.  I can see how that can be as emotionally devestating as getting a false hope status update.  For me, I think the difference is that I am an adult, I "know" my AVM and can tell when progress is happening.  Gabi doesn't have the ability or the understanding to do this yet, and you can't because you aren't part of her physical body.  It's gotta be extremely difficult for you.  I know that my mom never felt like she understood any of this when I was a child and having crazy bleeds and 7 hour long embolizations.  And there was so much less info out there back then.  I don't know if that is worse or better.  She had no choice but to trust the docs and go with that.  She couldn't really research who else could treat these or if this was the right treatment, etc.  So she didn't second guess as much as people might now.  Again, which is better I don't know.

I absolutely could tell when it is getting better.  First of all, the pain went away.  I'd been having sharp and awful pain in certain areas.  I was taking tylenol like candy.  Couldn't tell you the last time I had pain from this outside of treatment pain.  It just doesn't happen anymore.  The size also went down.  I could see it shriveling up.  All the metal in my face became more apparent as the swelling decreased and the skin and tissue contoured around my coils.  Nice bumpy appearance for sure, but a good sign.  Other areas swelled some and I also knew that was a sign it was "moving" and trying to recoup from the damage of the alcohol.  But it was recouping much less than we were damaging.  I could see that we were winning.  I wasn't having as many scary bleeds.  I've had very few in the last year and they have all been "less" blood and less forceful.  Easy to stop and didn't keep rebleeding.  All good signs.  Of course the most telling sign for me is that I used to actually be able to see my face pulsing from the blood.  And I could easily find the "thrill" under my chin and along my neck to FEEL the blood wooshing though.  When that started to decrease I knew we were making progress.  When I could hardly find that thrill anymore I became more confident that this was actually happening and not just a "hope" that I had.  Accepting progress was actually hard for me.  I'm optimistic for sure, but also very conservative and cautious to believe the progress.  I don't want to give myself false hopes!  And having lived with this for 30 something years and the info I got as a child...honestly I had a hard time believing that this really ever could be gone.  I still do!  But I see the difference, I feel the difference, and I know it is getting better.  Will it ever be "cured" I don't know.  I guess I can't let myself really believe that through some sort of self preservation mechanism.  But I totally HOPE I will be cured.

I know that was long winded and really didn't necessarily answer some of your questions.  And I guess it boils down to- Yes it sucks to not know, but would you rather be taken on the rollercoaster of changing percentages?  However, because you are so focused and feeling so unsure at this point- ask them.  Tell them your concerns and your emotional state with this.  Ask for what signs to look for, or how else to put your mind at ease.  You may not get exactly a "hard" status but you may get enough to feel better.  I do know that Yakes doesn't want families to be emotionally distraught any more than they have to be.  And if his silence with all it's good intentions is backfiring, well maybe he could change his approach with you guys.  Plus the fact that Gabi can't give you guys any real feedback on this...you don't have the same insight as some of the older patients.  He may be more willing to talk about the progress and status because of this.  Contact Kelly and talk with her first.  She maybe able to help or even just coax some info out of Yakes.

My husband did "push" a couple of times for more info on the "she did well, we are making progress, she is in recovery" calls, and would get tiny little tidbits from him.  And those did help.  The first time he told Josh that I was getting closer to the end, Josh totally said "I know I'm not supposed to really ask, but do you think you could estimate how close?"  And Yakes did hesitantly tell him "well probably about 80%."  And we went with that knowing that I couldn't calculate out 20% more trips down to an actual # and that we couldn't come up with a specific month I would be done.  But hearing 80% was a huge relief for us.

As far as some of your other questions- here we go :)

I get a varied amount of alcohol.  Have had as little as 3cc's and as high as 33cc's.  It seems that a "normal" range for me was more in the 12-15 range.  Of course the alcohol is based on the size of the patient.  There is some actual calculation using the weight but I don't remember what it is.  This could have a huge impact on how quickly he is able to treat different patients.  If he has to do a ton of much smaller ones on Gabi, and she goes less often than I do...well then I'm going to be done so much faster just based on the size and frequency of the treatments.  And that could totally wear you guys down.  Definately would be something I would ask them about.  Get a better understanding of the overall picture and timetable based on ability to treat and length between.

And yes, I've had it caused blisters and some little wounds and scars on the surface.  Not too often, but it has happened.  It absolutely has to do with how superficial those vessels are.  The closer to the skin the more chance of damaging that tissue.  Mine is both deep and superficial but much deeper in general I beleive than Gabi's.  I don't have too much discloration visible so that's why it isn't really an indicator for me either of progress.

And actually, I often feel "fine" after treatment.  I hardly ever take the pain pills and normally just feel generally tired and gross from the swelling and drooling and such.  For Gabi I would assume that she can't rationalize and seperate the real pain from all of those other parts mixed in.  I don't know but it's prob worse for her regardless.  She doesn't want to do any of it, can't rationalize the benefit of this, and just hates to feel yucky.  Totally understandable!  It's hard for the kiddos.  I do know that. 

However having been "tortured" as a child as well... I really don't remember much of it.  I remember being at the hospital.  I DO remember the fear of anesthesia and of the IV, and I remember worrying about bleeding in general.  But otherwise, no bad memories.  No vivid memories.  I have more memories of the toys I got as treats than of what actually happened at the hospital!  I think my mom was MUCH more traumatized than I was.  And I was actually older than Gabi for most of this.  So as much as it may sound weird to say...I doubt she is going to remember much of this later in life.  She will probably have more "memories" based on the stories she hears about what happened to her, than actual memories.  It totally sucks now, but she should be better off not having to worry about her VM a few years from now.  It will all "just" be stories but nothing much to worry about.

I don't know what to say about the trauma of anesthesia each time.  I actually used to get very sick afterwards and would take ANYTHING they gave me before hand to avoid throwing up post op.  Most of the time I couldn't avoid it.  I have no words of wisdom for helping on that part.  I imagine she would be happier if she took the versed.  But ya, try reasoning with a 3 year old, right?  I know that one of the moms I talked with a lot would always get right beside Camellia and whisper a soothing story in her ear as they prepped her.  Even that, she still fought the mask most of the time.  I don't think there is any answer for it.  I remember they used to let me take my doll in with me and would give her a mask too.  Helped distract me.  But I don't know that it made it any easier for anyone.  And again, this is probably WAY more traumatizing for you than it actually is for her.  She knows she doesn't want to do it and she is scared, but it's only for a few minutes.  That sounds awful to say!  I wonder how much she actually remembers about right before anesthesia...I have total short term memory on everything that happens in the RAD room and I think I'm awake much longer than she is.  I have to keep apologizing to the nurses and rad techs cause I just can't remember their names.  And they always brush me off and tell me it's just part of the anesthesia.  So maybe the fact that she doesn't remember that part of the treatment helps to make it easier for you?  Prob not.

I hope this has helped some.  If at least just given you some more info about adult memories of doing this as a child.  But really, the only thing I can say is that I am convinced this is the right treatment for me and that I absolutely encourage parents to have their kids treated young to avoid some of the unfortunate situations that I dealt with growing up.  It's wasn't all bad for me.  I did have a happy childhood.  But it would have been easier if I didn't have to worry about the AVM, if my face wasn't changing and looked different enough for the stares and comments, if I didn't have to "deal" with any of this.  Avoiding these things can have a huge impact on your child.  I know some other adults who had such worse experiences growing up than I did.  Who were traumatized, teased, felt isolated and outcasted.  I feel absolutely blessed that I didn't have those issues or didn't let them affect me somehow.  I can still see the effects of all of this on some of those people now.  And THAT is one of the reasons that I feel so strongly about other girls being able to avoid it.  Sure it sucks now, and it's painful and unhappy.  But in the grand scheme of things, will this torture be so much less than the torture experienced gorwing up "different?"  I think so.

Sorry for the incredibly long email.  I warned you!  :)  Again, I hope this helps in some way.  And please feel free to ask me anything.  Also, def contact Kelly.  I think she can help you get some information or answers that will keep you feeling a little more "in the loop" than you do currently.  Anything is better than nothing, right?

Good luck!
Shalon