mikesduster
Well-Known Member
About a yr and a half ago,someone posted on here about a beautiful little girl in OH. with cancer. I dont remember who they were but we,my wife and I, have been in contact with Avalons mom Alicia for some time now. I just recieved a email from Alicia saying Avalon is not doing well so I wanted to post her email up here so everyone to see. Its long but worth the read.
Good morning everyone. First, a huge apology. I don't have the mental capacity to be proper or organized at the moment, so I'm sorry, this email is going to everyone in my address book. If you don't know me, and just sold me something on ebay...or tried to sell me something on the internet...sorry about this. I believe the kid expression is "Tough nubs", you got caught in the cross fire. Same goes for people who no longer care to know me. Sorry about that, you also got caught in the wave. Heck, I don't even know how many of these addresses are still active.
In a nutshell, Avalon is in serious medical trouble, and I wanted to get the word out to people who care, have cared in the past, or who need to know why I haven't been/won't be very communicative for a while.
Due to physical cues, and neuro-ophthalmologic indicators, Avalon had a lumbar puncture yesterday to measure her intracranial pressure. Normal ICP is 8-12. Avalon's was 31. Her brain is, once again, being squeezed to death, literally. With her temporal decompressions, no one thought it would ever be possible for her pressure to get this high. Once again, Avalon has figured out how to shock everyone.
If you care/wonder/are curious/need a refresher-course, there is a page on Avalon's website that explains about her pressure, her brain damage, her temporal decompressions. http://www.avalonsarmyofangels.com/story99.html
So here it is. On the cancer front, we're all clear. The CBC was
beautiful. But Avalon's pressure hasn't been this high since before
the first shunt. No wonder she's losing vision, having tremors, and looking
awful. Her brain is being squeezed beyond belief. With the temporal
decompressions, the pressure isn't supposed to be able to get this high, so
they did it twice. No luck, she really was 31. They drew off enough fluid yesterday
to get closing pressure down to 17, but it is a short term solution, CSF will replenish within 48-72 hours.
After the LP, we met with the neurosurgeon, who was visibly rattled. He had the NP
check her shunt setting, hoping it had somehow moved. No dice, it was still
fully open. He has scheduled a 3D CT scan for Thurs morning, Oct 15. Pending what
he finds on that scan, and a possible MRI, Avalon's world is going to stink
out loud for a while. Here's what I know now.
1) Neurosurgeon is hoping the decompressions have possibly grown some new
bone. If so, he will go in and redo them. That is two brain surgeries, two
PICU/hospital stays, with the second recovery taking longer.
2) Whether or not the decompressions are redone...we still have to find a
new draining mechanism to help them.
a) if her ventricles are as small as other doctors have said, he will
NOT put a new shunt in the other side of her brain. On the L side, the
speech center is right where the shunts go. A shunt there could make her
mute for the rest of her life.
b) We (Nick and I) want to rule out an LP shunt, due to infection rates, failure rates, and over draining - Avalon is very sensitive to low pressure. An LP shunt could
leave her waking up vomiting and screaming in agony every day of her life.
No thanks.
c) There is a y valve thing that we discussed with her first
neurosurgeon (good guy #1, before Voldemort). The y valve is a very tricky,
long, dangerous surgery, but can be done.
3) We can revise the current Voldemort shunt. Good surgeon #2 (current
guy) is VERY scared to do so, given the dropped shunt.
Damaging more brain stem is a horrifying thought. She could be fully
paralyzed on the R side, lose more vision, etc. Although truthfully, I'll
take wheelchair dependant over mute. I love that little voice soooooo much.
Avalon only cried yesterday when she found out she would possibly miss Trick or
Treat and her final cheerleading day. (its at a big stadium) She never
really cried either, her eyes filled up, and she looked desolate...she only
let herself cry when I said it was OK to be sad. (I felt like I had to warn
her as soon as we knew the pressure.)
Later, the only thing she asked the surgeon was if she could possibly Trick
or Treat. That 64 yo wonderful father of grown girls bent down and told her he'd do
everything he could to work that out for her. After all, Trick or Treat was
pretty special. I don't know how on earth he's going to manage that with
what he's proposing. We also told her the other cheerleaders would probably
have to wheel her on the field and she could cheer with a special hat, from
her chair. With both promises, she was OK. Sad, but determined.
As for us, Nick and I...we're beyond terrified/sad/paralyzed with fear. This has been so big, I have told very few people over the past few weeks, just trying to wrap my brain around it.
Right now, I'm guessing those of you that didn't know any of this are shocked. Welcome to my world. Some of you may be thinking, "Geez, I'm tired of hearing about that kid's problems." Me too! So I totally understand if you want me to delete your email address. Honestly - I really get it. Feel free to email me if you do. Or, hit delete when you see Avalon in the title. And then again, the vast majority of you, whom I know to be loving, amazing, KIND-HEARTED people are thinking, "What can I do?" I wish I had a magic wand that I could fill with your prayers and kind thoughts. She'd be running marathons if I could.
For now, I have a few immediate requests for anyone willing to help.
1) I'm looking for anyone with HTML expertise to help me install an application on Avalon's website that will notify people when I update it, and to help put a guestbook on there. I'm completely flummoxed with both things, so I've often just not used her site. Avalon's Army of Angels is hosted on Yahoo and I build it with Yahoo Sitebuilder - mainly because it's simple and I understand most of it. I'm more than willing to share my passwords, if one of you have the knowledge to help me. I want to be able to send automatic update notices like Caringbridge does. And I want to give people an easy way to communicate with us.
2) My car is once again croaking. It's the same oil pressure issue that trapped us in DC for a week this Summer. I can go 20-30 min and the pressure goes to zero. The van has been to 2 Dodge dealers, three times total, they say it's fine. They're wrong! Anybody know a mechanic with half a brain? I took my dad's car to the hospital yesterday so we didn't get trapped on 315. We're about to make a zillion trips back and forth to the hospital, I kind of need a car that works! Any grease monkey friends or relative would be worshipped by us. Nick can/will help, but we need someone who is smarter than the stupid Dodge dealers have been. (wish I had those several thousand dollars back. Grrrr....)
3) Any positive thoughts you can send Avalon's way, we greatly appreciate. We covet your prayers and loving thoughts. They have saved her in the past - I believe that Great LOVE can do amazing things.
I don't know if I'll do this mass email thing again, I don't want to pester people. Hopefully, some computer guru somewhere will help me get the notification/membership thing on the site, so you can choose to hear from me.
Thank you in advance for caring about Avalon. My heart hurts worse than I thought possible. After last year, I thought I'd seen Hell. Nope. It would seem we've just descended down another level. Apparently Dante had a point, there are several levels to it after all.
Much love to all of you! I hope you'll forgive me for not communicating in so long. Truth is, we've had the best summer of our lives! We've done normal, silly, family things. We've all been so HAPPY, and Avalon has been enjoying life to the utmost. We've been so giddy to be normal, we've kind of been selfishly quiet, if that makes any sense. Long story short, we had our version of a fairytale summer, and loved every second of it. Guess that's going to have to last us for a while.
((HUGS)) and many "Thank Yous" coming your way. As usual, please feel free to pass this email on to anyone you wish, and you are all always welcome to contact us here at alicia@crazycancermom.com .
LOVE to each of you.
Alicia, Nick, Aurora, Ambrosia, AVALON, and Anam
We may not be able to HEAL Avalon but we all can do 1 thing and thats PRAY!!!!
If SOMEONE in OH that lives near them,could you PLEASE see if you can help them out with their caravan?? Could be a small fix or a big fix but can someone just atleast look at it for them?? I know they would REALLY appreciate it!!!
Thanks,
Mike
Good morning everyone. First, a huge apology. I don't have the mental capacity to be proper or organized at the moment, so I'm sorry, this email is going to everyone in my address book. If you don't know me, and just sold me something on ebay...or tried to sell me something on the internet...sorry about this. I believe the kid expression is "Tough nubs", you got caught in the cross fire. Same goes for people who no longer care to know me. Sorry about that, you also got caught in the wave. Heck, I don't even know how many of these addresses are still active.
In a nutshell, Avalon is in serious medical trouble, and I wanted to get the word out to people who care, have cared in the past, or who need to know why I haven't been/won't be very communicative for a while.
Due to physical cues, and neuro-ophthalmologic indicators, Avalon had a lumbar puncture yesterday to measure her intracranial pressure. Normal ICP is 8-12. Avalon's was 31. Her brain is, once again, being squeezed to death, literally. With her temporal decompressions, no one thought it would ever be possible for her pressure to get this high. Once again, Avalon has figured out how to shock everyone.
If you care/wonder/are curious/need a refresher-course, there is a page on Avalon's website that explains about her pressure, her brain damage, her temporal decompressions. http://www.avalonsarmyofangels.com/story99.html
So here it is. On the cancer front, we're all clear. The CBC was
beautiful. But Avalon's pressure hasn't been this high since before
the first shunt. No wonder she's losing vision, having tremors, and looking
awful. Her brain is being squeezed beyond belief. With the temporal
decompressions, the pressure isn't supposed to be able to get this high, so
they did it twice. No luck, she really was 31. They drew off enough fluid yesterday
to get closing pressure down to 17, but it is a short term solution, CSF will replenish within 48-72 hours.
After the LP, we met with the neurosurgeon, who was visibly rattled. He had the NP
check her shunt setting, hoping it had somehow moved. No dice, it was still
fully open. He has scheduled a 3D CT scan for Thurs morning, Oct 15. Pending what
he finds on that scan, and a possible MRI, Avalon's world is going to stink
out loud for a while. Here's what I know now.
1) Neurosurgeon is hoping the decompressions have possibly grown some new
bone. If so, he will go in and redo them. That is two brain surgeries, two
PICU/hospital stays, with the second recovery taking longer.
2) Whether or not the decompressions are redone...we still have to find a
new draining mechanism to help them.
a) if her ventricles are as small as other doctors have said, he will
NOT put a new shunt in the other side of her brain. On the L side, the
speech center is right where the shunts go. A shunt there could make her
mute for the rest of her life.
b) We (Nick and I) want to rule out an LP shunt, due to infection rates, failure rates, and over draining - Avalon is very sensitive to low pressure. An LP shunt could
leave her waking up vomiting and screaming in agony every day of her life.
No thanks.
c) There is a y valve thing that we discussed with her first
neurosurgeon (good guy #1, before Voldemort). The y valve is a very tricky,
long, dangerous surgery, but can be done.
3) We can revise the current Voldemort shunt. Good surgeon #2 (current
guy) is VERY scared to do so, given the dropped shunt.
Damaging more brain stem is a horrifying thought. She could be fully
paralyzed on the R side, lose more vision, etc. Although truthfully, I'll
take wheelchair dependant over mute. I love that little voice soooooo much.
Avalon only cried yesterday when she found out she would possibly miss Trick or
Treat and her final cheerleading day. (its at a big stadium) She never
really cried either, her eyes filled up, and she looked desolate...she only
let herself cry when I said it was OK to be sad. (I felt like I had to warn
her as soon as we knew the pressure.)
Later, the only thing she asked the surgeon was if she could possibly Trick
or Treat. That 64 yo wonderful father of grown girls bent down and told her he'd do
everything he could to work that out for her. After all, Trick or Treat was
pretty special. I don't know how on earth he's going to manage that with
what he's proposing. We also told her the other cheerleaders would probably
have to wheel her on the field and she could cheer with a special hat, from
her chair. With both promises, she was OK. Sad, but determined.
As for us, Nick and I...we're beyond terrified/sad/paralyzed with fear. This has been so big, I have told very few people over the past few weeks, just trying to wrap my brain around it.
Right now, I'm guessing those of you that didn't know any of this are shocked. Welcome to my world. Some of you may be thinking, "Geez, I'm tired of hearing about that kid's problems." Me too! So I totally understand if you want me to delete your email address. Honestly - I really get it. Feel free to email me if you do. Or, hit delete when you see Avalon in the title. And then again, the vast majority of you, whom I know to be loving, amazing, KIND-HEARTED people are thinking, "What can I do?" I wish I had a magic wand that I could fill with your prayers and kind thoughts. She'd be running marathons if I could.
For now, I have a few immediate requests for anyone willing to help.
1) I'm looking for anyone with HTML expertise to help me install an application on Avalon's website that will notify people when I update it, and to help put a guestbook on there. I'm completely flummoxed with both things, so I've often just not used her site. Avalon's Army of Angels is hosted on Yahoo and I build it with Yahoo Sitebuilder - mainly because it's simple and I understand most of it. I'm more than willing to share my passwords, if one of you have the knowledge to help me. I want to be able to send automatic update notices like Caringbridge does. And I want to give people an easy way to communicate with us.
2) My car is once again croaking. It's the same oil pressure issue that trapped us in DC for a week this Summer. I can go 20-30 min and the pressure goes to zero. The van has been to 2 Dodge dealers, three times total, they say it's fine. They're wrong! Anybody know a mechanic with half a brain? I took my dad's car to the hospital yesterday so we didn't get trapped on 315. We're about to make a zillion trips back and forth to the hospital, I kind of need a car that works! Any grease monkey friends or relative would be worshipped by us. Nick can/will help, but we need someone who is smarter than the stupid Dodge dealers have been. (wish I had those several thousand dollars back. Grrrr....)
3) Any positive thoughts you can send Avalon's way, we greatly appreciate. We covet your prayers and loving thoughts. They have saved her in the past - I believe that Great LOVE can do amazing things.
I don't know if I'll do this mass email thing again, I don't want to pester people. Hopefully, some computer guru somewhere will help me get the notification/membership thing on the site, so you can choose to hear from me.
Thank you in advance for caring about Avalon. My heart hurts worse than I thought possible. After last year, I thought I'd seen Hell. Nope. It would seem we've just descended down another level. Apparently Dante had a point, there are several levels to it after all.
Much love to all of you! I hope you'll forgive me for not communicating in so long. Truth is, we've had the best summer of our lives! We've done normal, silly, family things. We've all been so HAPPY, and Avalon has been enjoying life to the utmost. We've been so giddy to be normal, we've kind of been selfishly quiet, if that makes any sense. Long story short, we had our version of a fairytale summer, and loved every second of it. Guess that's going to have to last us for a while.
((HUGS)) and many "Thank Yous" coming your way. As usual, please feel free to pass this email on to anyone you wish, and you are all always welcome to contact us here at alicia@crazycancermom.com .
LOVE to each of you.
Alicia, Nick, Aurora, Ambrosia, AVALON, and Anam
We may not be able to HEAL Avalon but we all can do 1 thing and thats PRAY!!!!
If SOMEONE in OH that lives near them,could you PLEASE see if you can help them out with their caravan?? Could be a small fix or a big fix but can someone just atleast look at it for them?? I know they would REALLY appreciate it!!!
Thanks,
Mike
