Back to Punkalunka Home
Grant became ill in mid-March 2001 with what seemed to be just an ordinary
virus. He left work in the middle of the day Wednesday March 28, 2001. He was
exhausted and said he just needed to sleep.
SUBJECT: Grant Munsey is really sick!
April 1, 2001
Hi Mary Ann! Grant asked me to let you know that he'll be out of the office
for at least a few more days. It turns out he's really sick. Best diagnosis
so far is brain stem encephalitis, and he's in the ICU at Los Gatos
Community Hospital on Pollard Road in Los Gatos -- no visitors except
relatives at this point.
We have had an unforgettable terrifying weekend, beginning with
Grant not being able to walk and actually falling several times on
Saturday morning. His legs were also getting
numb and shaking uncontrollably. We called the paramedics, since I
couldn't lift him. They came with a big fire truck and an ambulance.
The hospital folks analyzed about twenty vials of blood and still didn't know what
the problem was. Most of Saturday night they were talking brain
or spinal absess requiring emergency neurosurgery! Poor Grant had
a spinal tap, two CAT scans, and an MRI. Meanwhile he wasn't
getting any better. Today his speech began to be very
slurred. The frightening thing was that he wasn't aware of it.
He's been incoherent and semi-conscious most of today. Tonight they are
starting bigtime steroids, because what he has, according to the doctors'
latest theory, is an autoimmune problem. He DID have the flu starting about
2 weeks ago, and mostly got over it, but his body never got
the message to stop making the flu-attacking antibodies, so it kept making them
and then started aiming them at his own brain cells.
The nurses are very reassuring about the prognosis -- full recovery --
though the doctors talk about "a serious condition that requires management."
Everybody is pretty vague about exactly how long it's going to take him to
get back to normal. You'll know Grant's feeling better when
he asks for his computer and starts emailing people again. He'll be able
to have visitors also once he's out of the ICU, but everybody is maddeningly
vague about when that will be. We'll know a lot more in a few days.
Thank goodness for Adobe health insurance!
Regards,
Sandy (wife of Grant)
_____________________________________________
SUBJECT: Update on Grant -- no news
April 4, 2001
Hi Marianne,
Thanks so much for the fruit basket. I received it on Monday
but only after I spoke with you on the phone.
Today (Wednesday) he's still in the coma. Things seem stable.
The doctors are trying a new medication because the steroids don't seem
to be working. They said there's about a 50-50 chance this new
medicine will reduce the inflammation. They also said some
people just spontaneously come out of
this sort of thing, medicine or no medicine.
Thanks for the good thoughts and prayers. It means a lot to me
to know that so many people are concerned.
Sandy
_________________________________________
SUBJECT: RE: Your husband's illness
Thank you, Luisa. Let's hope for the best.
Sandy
-----Original Message-----
From: Luisa L (student)
Sent: Wednesday, April 04, 2001 12:19 PM
To: sandy_lafave@westvalley.edu
Subject: Your husband's illness
Dear Dr. LaFave,
I heard that your husband is not doing well. This note
is just to let you know my thoughts and prayers are
with you and your family. I sincerely hope for his
speedy recovery and for your good health as well.
Warmly,
Luisa L
__________________________________________________________
SUBJECT: RE: No Subject
Thanks, Dave. What a nightmare (as you know).
Sandy
-----Original Message-----
From: Dave
Sent: Thursday, April 05, 2001 7:13 AM
To: sandy_lafave@wvmccd.cc.ca.us
Subject: No Subject
Sandy,
My thoughts, and deep hopes are with both of you. You were with me in
meditation this morning, and will continue to be.
love,
Dave
____________________________________________________________
SUBJECT: Update on Grant -- no news
Wednesday April 4, 2001
Hi Marianne
I was kind of scared yesterday because Grant had a high temp (103), but
I talked to the nurse this morning and that seems to be going down now. He is
still ""locked in"" -- the doctors say he can probably hear and understand
everything going on around him when he's awake, but he can't
respond because he's completely paralyzed.
The official name for what he has is acute disseminating encephalomyelitis
of the brain stem. There's not much known about it because it's so rare.
I am concerned about the outside plants at the Aptos house... if anyone lives over
there, it would be nice if they could go over and water the plants around the
house on the outside. The hose is already all hooked up -- it's pretty
obvious what to do. The address is ... -- you can get a map off
Mapquest. The person doing this needs to be a fairly fearless driver, since
the roads aren't that great, and I certainly don't want anybody getting hurt for
such a trivial request. But they will be rewarded by a fantastic view! It's not
a big deal but it's been on my mind, and if you can't find anyone to do it,
don't worry.
Thanks for everything. I can't tell you how comforting it is to me to know
so many people are thinking of Grant and having good thoughts for him. I remain
terrified, and have a major crying meltdown several times a day, but okay
otherwise.
Sandy
-----Original Message-----
From: Marianne
Sent: Wednesday, April 04, 2001 1:32 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Update on Grant -- no news
Thank you so much for the update, Sandy. I know you've got so much more on
your mind than keeping us in the loop here. There are so many people here
who have really been touched in some way by Grant and have come looking for
him or news about him. We all look forward to updates - Martin sent one
last night too so it's really helped. I'm glad you got the basket. We
wanted to send something more practical than flowers and I hope you and
Grant's parents are grabbing bits of it to take back to the hospitial with
you too.
If prayers and wishes and thoughts are enough to pull him through, believe
me, there sure is a lion's share coming from these two buildings. Everyone
has asked about how you're doing too so please let us know if there's
anything at all we can do. Is everything okay with the Aptos house? If
you need plants watered or mail or papers picked up, we're available...
anything else too. All you need to do is let us know.
Just in case you can't find it, here's my home number again. Jack and I
will be around all weekend and are happy to be available to do errands or
give rides or anything at all, okay? It's ...
Hang in there. We're all thinking about you. As we said in the note,
don't forget to take good care of yourself too.
Thanks again for the update,
Marianne
____________________________________________________________
SUBJECT: Grant Friday April 6, 2001
Today (Friday) no news. He is still in the coma.
He had a trach tube put in this morning so he wouldn't
get any damage from the ventilator. Apparently they are
setting up for a long-term thing (you can use a ventilator
up to 10 days without damage -- the fact that they're
inserting the the trach after only 5
days says to me that they don't expect this to end soon).
I am up and down. I'm trying to stay positive for him
but having major crying meltdowns several times a day,
feel like I can't breathe right, having shaking spells, etc.
His prognosis is unknown.
Lots of people are being very supportive. Grant's parents
are here, but they are leaving tomorrow. One of his sisters will
come later. My brother Danny comes by every day. We talk to
him and read to him, etc. when we're at the hospital -- that's
supposed to be good. I want someone by my side all the time
but the person I really want is Grant of course.
I tried to get your phone number from 613 information
but it was busy -- maybe I'm doing something wrong. Could you
send it to me via email so we can talk? I'd really like to
talk to you; I need support and encouragement so I can be
strong for him.
Well, I've got to get ready to go over to the hospital now,
to see what fresh horror awaits ...
Sandy
____________________________________________________________
SUBJECT: RE: Aptos is just fine
Friday April 6, 2001
Hi Marianne,
That's a wonderful idea. I've been reading to him from Dilbert and
Steve Martin and from the book he was reading when he got sick. But
I think it would be even better for him to hear about people and things
he knows personally. I told him what you'd said about the hospital going
wireless! Today I brought in a portable CD player and some CDs
he likes. Of course there's no telling if he's hearing anything or not;
the big honcho MD said he thought probably so, though.
He had a trach tube put in today. I am very bummed because this means
thay think this is going to go on a long time. He had been on a ventilator,
and ventilators start to do damage after 10 days or so -- but here it's
only been 5 days and they're switching over to the trach already. They say he'll
be more comfortable, but still, it was a surgery, another cut...
They're taking very good care of him, as far as I can tell. They're always wheeling
him around for some test or other; they're doing some pulmonary function thing
today. The thing is, I don't know enough to tell what tests are routine and
what indicate something worrisome, so they all seem equally worrisome to me!
His vital signs remain fine. They have him on IGG therapy now
that the synthetic steroids have failed -- I think that "IGG" for "immuno-gamma-
globulin"?? -- it's the "industrial strength" of steroids, apparently, the real stuff.
It's too early to say whether that's having any effect, though.
I am not having a good day today, pretty much haven't stopped crying all day.
I think the trach is distressing me, because it's a sign that they don't expect
things to end soon. And Grant's parents are leaving tomorrow. There's
certainly something to be said for living far away from family (especially in
OUR cases!) -- but it's also a drag at times like this.
Feel free to forward my emails to interested parties, at your discretion...
I feel so stressed for time (I want to be with him at the hospital all the time --
even though that's not necessarily good for anybody), it's hard to
update everyone separately.
When he gets well, let's show him all this correspondence, so he
can feel good and guilty for what he's putting us through! :-) I keep
telling him he can stop now, he's proved he can get sicker than anyone else!
Say thanks to Jim, will you? That was nice of him. We kept intending
to show that house to friends, but this isn't exactly the way we had in mind.
Thanks so much for everything you're doing for us. It really helps.
Sandy
-----Original Message-----
From: Marianne
Sent: Friday, April 06, 2001 9:11 AM
To: sandy_lafave@westvalley.edu
Subject: Aptos is just fine
Jim K and his wife stopped by your Aptos house last night and watered
the plants (of course, with all this rain, I don't think it'll be a problem
for the rest of the weekend). He said you were right, the view is
magnificent.
We'll make sure it's taken care of as long as you need it.
Some of Grant's friends here want to send some messages for him - updates
on office life and funny stuff we know he'd appreciate. Could I collect
them and send them to you? We were thinking if he can hear you, perhaps
you could read them to him. Let me know if this is a bad idea though and
I'll discourage it.
Hoping all's stable,
Marianne
____________________________________________________________
SUBJECT: Midterm?
Don't worry about it right now. You're right that we didn't
get a chance to talk about Marx or Nietzsche, so I don't intend
to make you write about that stuff yet. My husband's situation is
pretty serious, and I'm hoping to be back after the break, but
you may end up having a substitute teacher for a time.
Sorry things got so chaotic all of a sudden.
-----Original Message-----
From: Matt T (student)
Sent: Sunday, April 08, 2001 9:33 AM
To: sandy_lafave@wvmccd.cc.ca.us
Subject: Midterm?
Hi
I was just wondering if the midterm was still going to
be due when we get back from break? I don't think we
got a chance to talk about all of the topics before
the break. I just wanted to double check the due
date.
thanks,
Matt
____________________________________________________________
SUBJECT: Grant -- Monday April 9, 2001
Dear Friends
Grant has been receiving immuno-gammaglobulin treatments since Wednesday,
since the original meds didn't seem to have any effect. It's not clear yet
if they're working, but it may take some time.
For the last couple of days, he has been spiking a temp (104 degrees) in the
afternoons. This has been a cause of some concern but, maddeningly, no
one knows what it means. The interpretations range from benign to disastrous.
It could be a reaction to the medications, or it could mean a "neurological
event". One of the doctors told me it would be a very ominous sign only if
his temp couldn't be controlled. Thankfully, they have been able to get the
temp down relatively quickly every time so far. Yesterday they used a cooling
blanket, and that worked very well. The report this morning is that he "had
a good night" last night, and his temp is now below 100, and that's the lowest
it's been for days.
His spontaneous movements are less frequent and less spastic. Again, no
one knows what this means. It might mean the brain swelling is going down,
the encephalitis is running its course, and he's on the way to regaining voluntary
control -- or it might mean ... well, you can imagine.
They are planning to do another MRI Tuesday or Wednesday if he doesn't wake
up. The MRI should show how things are progressing -- whether the swelling is
more or less, and whether it's spread beyond the brain stem.
He's been having some trouble with his blood sugar levels, so they have him
on IV insulin. On the positive side, his heart rate, respiration (assisted by the
ventilator), oxygenation, and blood pressure all remain steady and strong.
We've been talking to him, reading to him, playing music, etc. in the hope
that he can hear when he's awake. On the advice of his uncle Jim Brydges,
I've been urging him to "reboot"-- he would certainly find such language
natural to apply to himself.
I am so grateful for all the support you've been giving me during this
very stressful time. It is wonderful to hear from you all, and it really helps.
I would never have guessed how much it helps.
Our neighbors' children wrote him letters this weekend.
One child wrote: "I hope you can wake up. I wish you'd never
gotten sick at all. You must be scared. I'm scared myself."
I think that just about sums it up, don't you?
If you want to send emails for me to read to him, please do!
Love,
Sandy
____________________________________________________________
SUBJECT: Question About the Monday We Come Back
Hi Brandon,
I hadn't made any plans to give the exam Monday and I think
you should go to Boston!
My husband is in a coma. He has an extremely rare thing (about
30 cases reported in the US ever). It is very serious but his
doctors are guardedly hopeful. I expect to be back Monday but
not quite "all there""for several more weeks.
-----Original Message-----
From: JR (student)
Sent: Monday, April 09, 2001 3:53 PM
To: sandy_lafave@westvalley.edu
Subject: Question About the Monday We Come Back
Hey Sandy. Is Exam 2 going to be given the monday we come back? I was
planning on heading out to Boston for the marathon (my brother is
running in it, not me) and would like to know if I can afford to miss a
day, since the trip will cut into the Monday we come back.
I sincerely hope things are shaping up for your husband.
Brandon
_________________________________________________________
SUBJECT: Grant Monday April 9, 2001 (second message)
Dear Friends,
It was kind of a surprise to me (and to the primary care MD),
but they did the MRI today (Monday). Good results! No spreading of the
swelling, no infection -- so his cerebral cortex is intact -- in fact,
no significant change at all from a week ago. "No change" was about the
best possible outcome, because they were worried the fevers might
indicate a spreading of the swelling beyond the brain stem. The fevers
are better today also. They had him on a cooling blanket all night,
and his temp was actually normal once today -- it went up again
but only to 101.
The MDs are thinking of taking him off the steroids altogether, since
they seem not to help and to mess up his sugar levels.
He has a slight staph infection (picked up at the hospital, which
I gather is not unusual), but they're not worried about it.
The big honcho infectious disease doctor has been talking to other
doctors all over the world about Grant's case, and he's "guardedly
hopeful" that the disease will pass by itself. It's just a
matter of keeping Grant healthy (as healthy as it's possible for a
comatose person to be) and waiting. The consensus among the experts
is that it may be another 3-5 WEEKS in intensive care before he wakes up. Then
a long recuperation period -- 3 days recuperation time for every day in the
hospital. All kinds of nasty things could happen in the meantime.
Still, combined with the negative MRI, it's the first hope I've had in ten days.
Since it's likely he can hear and understand at least some of the time,
please continue to send him your wonderful updates and messages!
I will sleep better tonight, I think. Keep having good thoughts for him!
Sandy
____________________________________________________________
SUBJECT: RE: Hello...
Hi Susan,
Thanks so much for your kind letter. I wish there were something anybody
could do. It helps to know other people love Grant too.
Sandy
-----Original Message-----
From: Susan D
Sent: Tuesday, April 10, 2001 10:54 PM
To: sandy_lafave@punkalunka.org
Subject: Hello...
Hello Sandy,
We met a couple of times at the Adobe office; I used to sit in the
office next to Grant. Grant and I started work together on the same
day almost four years ago (and we still mark that day with a group
lunch) and we're both Teletubby fans... I've been meaning to write
and meaning to write and I keep putting it off until I have more time
and have something clever to say. The time and cleverness don't
appear to be showing up anytime soon so here is a wee email to say
that I am thinking of you both many, many times a day. I can only
begin to imagine what you are going through and it's absolutely
horrific. How are you holding out? You're such a trooper. I read your
hopeful and informative emails that Marianne distributes and my hope
that Grant gets better soon stays very much alive. The thought that
someone as robust and hearty and healthy and full-of-vim-and-vigor
like Grant is lying comatose is so absurd. It just can't be true...
Grant would be so very touched to know how concerned all his fans at
the office are, how unbelieving they are when they hear he is so ill.
There are few people at the office who spread as much good cheer
wherever they go as Grant does. Just a couple of weeks ago Grant
stopped by my office to tell me he's back on the 10th floor. What a
treat it was a) to see him spontaneously and b) to know that I'd be
running into him again on a regular basis. Please tell him that
enough is enough and we want him back in all his healthy glory. This
is a far, far too serious way for him to take time off!
I am thinking of you, Sandy, and of Grant and I hope hope hope hope
hope that things turn around swiftly... (I am in Boston on business
this week but when I return next week I absolutely am available to
help out. I have a place in San Jose and not many meetings during the
days so if there's anything I can do, please don't hesitate to
mention it.)
Yours,
Susan
____________________________________________________________
SUBJECT: RE: Hello from a friend of Grant's
Hi M,
Thanks for your kind letter. I really appreciate your offer to help
deal with Aetna. It seems really dumb for Grant's doctor to have to spend
20 minutes arguing with them, when she could be caring for patients, especially
him! You are so right about the difficulty of being in the hospital alone,
depending on him for emotional support, etc. Lots of people are hugging me,
and that's great and helpful -- but I want HIM to be hugging me again and
it just destroys me to think of all the scenarios that may happen.
It would help, I think, to talk to people from Adobe, if you don't mind
if I blubber and bawl occasionally.
Sandy
-----Original Message-----
From: MR
Sent: Tuesday, April 10, 2001 5:35 PM
To: sandy_lafave@punkalunka.org; sandy_lafave@westvalley.edu
Subject: Hello from a friend of Grant's
Sandy -
I'm a friend and colleague of Grant's here at Adobe. In fact, Grant and I,
along with Susan (who is still here at Adobe), all started at Adobe
on the same day and went through orientation together. We have been friends
ever since. I'm the senior attorney supporting Greg's group and hence have
also supported Grant with any legal issues he has (e.g. getting his open
source site up).
I just wanted to drop you a note to let you know how much I've been
thinking of you and Grant. It seems every moment my brain isn't focusing
on something specific, it drifts off to Grant. I cannot fathom what you
must be going through! I have spent a lot of time in hospitals supporting
both my parents through various things, but never for my husband
(thankfully). However, I have also been a patient many times, once with a
chronic illness that seemed to take forever for the doctors to diagnose. I
know how painful all that was for me, but what you've had to face seems
much harder.
I understand that you are spending a lot of time in the hospital alone,
especially now that Grant's parents have left. Hospitals are a difficult
place to be when you have someone with you. Doing it alone a lot of the
time must be very difficult. I'm sure it is also awfully hard not to have
Grant to fall back on for support in all this. When something happens to a
spouse it makes you realize how much you rely on them for support.
Even though we haven't met, if it would help to meet someone new and just
chat for awhile, let me know and I will drive over to the hospital to chat
during lunch, after work, for breakfast, whatever. I always have found
talking to people helps. If this sounds appealing (and not stressful) for
you just let me know and we can arrange it.
I have also been trying to figure out what I can do to help, as has
everyone else here who knows Grant. Unfortunately, we all feel completely
helpless and know that we can't do much more than pray for him, send good
vibes his way, and send emails to you and him. However, in the last email
Marianne forwarded to a group of us from you, I picked up on something that
I may be able to help you with. Hopefully, you won't need it, but if Aetna
starts giving you a hard time and you want someone to help you deal with
it, having an attorney for a friend could come in handy. Although I am not
an attorney that focuses on health care issues, much of my legal background
and negotiation skills are applicable to dealing with insurance
companies. I manage my family's insurance matters (2 kids and a husband
with allergies and my chronic illness = a lot of experience talking with
Aetna) and I can be quite forceful when dealing with these
issues. Depending on the issue, you may find that you'd just rather not
deal with it. Hopefully they won't give you any trouble, but if you find
they are and would like some help in handling specific issues, please don't
hesitate to ask me for some help.
I'm sure you realize this by now, everyone here at Adobe who knows Grant is
thinking about and praying for him and for you. As I'm sure you know
better than anyone, he is just a wonderful person; I don't now a single
person who thinks ill of him. His humor and his laugh make many a dry
meeting enjoyable. He is always willing to help out with any issue. He
appeared at my office door one afternoon saying that he decided it was time
I got wireless. He spent the next hour trying to get my laptop wireless.
Because I was on an old OS, it never quite worked, but he said he'd come
back as soon as I upgraded. I have since upgraded to Win2K and fully
expect him to be back in my office helping me out soon! He is one of the
few folks who has offered to help me with something without me ever asking
for help.
My thoughts are with both of you. If you'd like to chat or need help with
something, please feel free to give me a call.
M
____________________________________________________________
SUBJECT: Grant Tuesday April 10 -- Spinal tap good, staph infection bad
Today (Tuesday, April 10) they've discovered that
Grant has a resistant strain of staph.
The infection is called MRSA, and from what I've been reading on the net, it's
potentially very dangerous. Now when we visit we have to wear gowns and
gloves. This sounds like exactly what the doctors said we wanted NOT to happen.
Sandy
_____________________________________________________________
SUBJECT: RE: Spinal tap good, staph infection bad
Dear Marianne,
You're right, I am going nuts.
Apparently they did the spinal tap yesterday to look for
any change in the spinal fluid from March 31, when he first went
in. There was no change this time, and that means nothing is worse
brain-wise. So that's good.
The staph infection terrifies me. The doctors kept saying there
was hope IF we would prevent this kind of thing. They said that
people don't usually die of the ADEM but rather from complications,
such as "opportunistic infections" -- such as this MRSA. I am
told they cultured his staph in the lab, and that they found Vancomycin
zapped it in the lab, so they started him on that. The doctors are
referring to this as a "treatable infection", which I suppose is better
than the alternative. They say he's still pretty strong -- though it's
hard to tell from looking at him.
The really creepy part is that everyone has to wear a gown and rubber gloves
to see him now -- Martin experienced this yesterday. And I can't touch him
without the gloves! This breaks my heart. I am concerned about all sorts
of things that may or may not matter -- e.g., his blood pressure has
steadily gone lower and lower. The nurses say this is nothing to worry
about as long as all the other vital signs are good (which they are); still,
it concerns me. I am not very good at focussing on the positive. I could
use some help with that!
He spiked a fever again yesterday, and yes, the fevers might be the staph,
so we might see some reduction in them with the Vancomycin. On the other
hand, they might be the encephalitis. He's been under a cooling blanket
which does not seem to work very well, mechanically, I mean. It works by pushing
cold water throughout, but it gets kinked sometimes, like a garden hose,
and then it's not cool at all, but warm! And the alarm doesn't sound
when this happens.
I need courage, so anything anybody can think of to say that's positive,
I'd really appreciate hearing! I am so scared. If people would just like to
come by with hugs and shoulders to cry on, that would help me.
My cell phone number, BTW, is NNN, if anybody wants to reach me.
Home phone is 408/252-1135. Be prepared to hear Grant's voice in the
greeting.
Sandy
-----Original Message-----
From: Marianne
Sent: Tuesday, April 10, 2001 4:46 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Spinal tap good, staph infection bad
Oh Sandy,
Arrrggghhh! You must just be nuts by now. It seems like every time you
get a bit of good news, there's something that knocking the wind out again.
I'm so sorry. So, the spinal tap was good news even if the staph wasn't?
What were they looking for in the spinal tap?
If they're still planning on stopping the steriods, wouldn't that help
boost him immune system to help stop the staph infection? Do you have any
idea how they're going to treat the infection? Geez, maybe the staph thing
is the reason for the fevers?
I know... probably too many darned questions that you don't have answers to!
I'm not expecting you to answer all these silly questions, I just wanted to
get back to you to tell you I'm sorry and I'm thinking about you. It's
still a fairly good day all in all, right?
How are you holding up? Is someone making sure you've got food around the
house and stuff like that (and that you're eating)? ;-)
Please tell me if there's anything at all we can do. Like laundry or
grocery shopping or any other mundane stuff you need (or big stuff).
You and Grant are never far from our thoughts all the time. Grant's sister
is there now, right?
Take care and try to get some rest...
Marianne
____________________________________________________________
SUBJECT: Grant starts a new treatment today
Thursday April 12, 2001
Dear Friends,
Well, the staph infection sounded really bad to me, and the nurses seemed
extremely concerned, but the doctors seem pretty nonchalant about it.
His pulmonary doctor said he "just has a few bugs". M said it's just
a matter of debugging, then, and I hope Grant sees it that way. If it's
anything produced by Grant, it probably doesn't have that many bugs anyway.
I gather he didn't have a spiking fever yesterday -- his temp stays around
101 -- so maybe the Vancomycin is having some effect.
I heard last night that the doctors will start plasmaphoresis (also called
"plasma exchange") starting today.
As I understand it, it's procedure for cleaning bad stuff out of the blood.
They take out all the blood and treat it and then put it back. It's funny, my
brother Dan mentioned that as a possible therapy a week ago. (Is it
commonplace for ordinary people to
have these bits of obscure medical knowledge? I am astonished at how much
people know. Am I not watching enough soap operas?) Then
yesterday M, who's found a lot of info on the net, also asked about it.
I gather it sometimes works wonders for similar-but-not-identical
conditions like Guillain-Barre syndrome. It sounds pretty drastic, but I
gather it's not any more dangerous than anything else they've been doing
to him.
Keep your fingers crossed!
Sandy
____________________________________________________________
SUBJECT: RE: Grant starts a new treatment today
Thanks Norm. They did start transfusing him today because he
seems to be getting anemic. I think he is O+ also; I'll check
tonight.
Sandy
-----Original Message-----
From: Norm (neighbor)
Sent: Thursday, April 12, 2001 9:41 AM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant starts a new treatment today
Sandy,
If Grant ends up needing blood or plasma, I donate often. I am O+ and I
can request for the stuff to go to a certain person.
Norman
____________________________________________________________
SUBJECT: RE: Grant
Thanks, Eric and Melody. What a nightmare this is. I appreciate your
good thoughts and prayers.
I'll add you to my email list.
Sandy
-----Original Message-----
From: Eric and Melody (friends)
Sent: Thursday, April 12, 2001 10:13 AM
To: sandy_lafave@punkalunka.org
Cc: sandy_lafave@westvalley.edu
Subject: Grant
Dear Sandy,
I am very sorry to learn of Grant's condition. I am saddened beyond words.
Please tell Grant that our thoughts and prayers for a speedy recovery will be with
him. I have been in contact with some of the old Cimlinc gang, and be assured
they all have similar sentiments.
Sandy, if there is anything we could do to help you through this very difficult
period please do not hesitate to let us know.
Sincerely,
Eric and Melody
____________________________________________________________
SUBJECT: Grant April 12 evening
Dear Friends,
Today Grant started the plasmaphoresis. They wheel in a big machine that has a
centrifuge about the size of a clothes dryer. It separates the red blood from
the plasma. They collect all the plasma and replace it with fresh stuff. The
theory is that the bad antibodies he's making will get flushed (I think).
He also started receiving blood transfusions. Apparently they are drawing so much
of his blood -- and some red cells get damaged also in the plasmaphoresis --
that he's getting anemic. I don't like to see yet another bag and another
line, but I guess it's good that they're monitoring him so closely.
On the plus side, the Vancomycin seems to be working on the MRSA infection,
especially around his trach -- there's lots less oozing and bleeding.
Last night I read him the latest pile of your email messages and I had the feeling
I was getting through, though I can't say why. It's wonderful of you to
make him feel he's still part of this world, to call him back as much as possible.
So if you think of anything you want to say to him, please don't hesitate to send
it on! FARAWAY FAMILY AND NON-ADOBE PEOPLE: This goes for you, too!
We'll have quite a scrapbook for him to look at when he gets well.
Keep him in your thoughts. We're not out of the woods yet by any means.
Sandy
____________________________________________________________
SUBJECT: RE: Hi Ivo
Do you ever come back out to your old stomping grounds
in the Bay Area? I live in San Jose now -- so if you're
in this area, be sure to get in touch. I do go out East
occasionally. I was hoping to go to the reunion in
Vermont, but I have been living a real nightmare the
last two weeks. My husband came down with a brain stem
encephalitis -- a very rare complication of flu -- and
has been in a coma for two weeks. Because the condition
is so rare, his prognosis isn't really clear, and in the
best-case scenario he will have a long recuperation period
extending through the summer.
Best wishes to you too. I'll be in touch when things
are less crazy.
Sandy
-----Original Message-----
From: Ivo (very old friend of Sandy, not heard from in 30 years)
Sent: Friday, April 13, 2001 5:37 AM
To: sandy_lafave@westvalley.edu
Subject:
Dear Sandy,
It was great to get your e-mail address. I often wondered, over the years,
where I could find you and say "hallo". This medium is not the best gap
filler. Still, next time you are in the New York area, let me know. I would
love to catch up. With warmest best wishes, Ivo
____________________________________________________________
SUBJECT: Grant Friday April 13
Things seem pretty stable today. Grant's still comatose, and the trach is still
oozing a lot, but the pulmonary doc was not concerned. Guess why? Because the
ooze didn't SMELL BAD! Grant's blood sugars are getting quickly back to normal. He's off
the steroids. His platelets are holding, so no transfusions today. The best news is
that his temperature seems to be normalizing. He got below 100
all by himself today -- without the cooling blanket or any medicine. He gets
another plasmaphoresis tomorrow.
Things are still serious. The most important issue now is just the damned coma,
and infection risk. They took more blood cultures today, so we'll know if he
has any new bugs in a couple of days.
No change is not bad, for a change!
Sandy
____________________________________________________________
SUBJECT: FW: Info on Plasma Exchange study
Dear Clarence and Frances (Grant's parents)
Thought you might be interested in these sites -- they support
the current therapy (the plasmaphoresis).
Love,
Sandy
-----Original Message-----
From: Martin (friend and coworker of Grant's)
Sent: Friday, April 13, 2001 9:15 PM
To: sandy_lafave@westvalley.edu; sandy_lafave@punkalunka.org
Subject: Info on Plasma Exchange study
Sandy,
Here is the web page that M was talking about. When she sent it to me at
work I found I couldn't go straight there, but had to follow some links. Start at:
http://www.ninds.nih.gov/health_and_medical/disorders/acute_encephalomyelitis.ht
m
On the left there is a link called ""Studies with patients"", which takes you to
ClinicalTrials.com at:
http://clinicaltrials.gov/ct/gui/c/a2b/action/SearchAction/screen/OpeningScreen?Te
rm=Acute+Disseminated+Encephalomyelitis
On that page is a link called Phase III Randomized, Double-Blind, Sham-Controlled
Study of Plasma Exchange for Acute Severe Attacks of Inflammatory Demyelinating
Disease Refractory to Intravenous Methylprednisolone which takes you to:
http://clinicaltrials.gov/ct/gui/c/w2r/screen/ResultScreen/action/GetStudy?order=
1&xml_file_id=xmlfiles%2FORD__NCT00004645.xml%40csdb&JServSessionIdzone_ct=
exlk6js301
which has some information. At the bottom of this page is a link called "More
information is available for this study", which takes you to Rare Diseases Clinical
Trial Abstract at:
http://rarediseases.info.nih.gov/cgi-bin/rare-phy_show?file=pro11693.html
I hope this works for you, and gives you some information.
It was good to see you this evening. I really thought Grant was looking better,
without that cooling blanket on. The pulmonary lady explained a bit of the
breathing machine. I had wondered why there were two quite different patterns on
the display and she said the machine handles two different types of breaths, and
it's all quite normal. It was good to meet the doctor - she seemed like a very nice
person.
I'll contact you either Sunday evening or Monday morning to see how things are.
Hang in there, we're about half way to the early target now.
Best,
--Martin
____________________________________________________________
SUBJECT: RE: Grant April 12 evening
Hi Marianne,
Martin said you'd be interested in coming by next week to talk/read
to Grant. I checked with the doc, and she said fine, with the usual caveats
(don't be sick, but you know that). So you are now "on the list"
of visitors, and if anybody gives you any problems, you can tell them to
look at the list.
I think it would be great for you to visit Grant. You know so much
more about the office stuff that he'd be interested in, and besides,
I know he really likes you as a friend. He often says how much he
enjoys talking to you and how much he appreciates all the things you do
for him there.
Sandy
-----Original Message-----
From: Marianne
Sent: Friday, April 13, 2001 5:51 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant April 12 evening
Hi again Sandy,
It occured to me reading your last email -- we're all learning a lot about
this stuff and ways to treat it. No doubt more that you ever wanted to
know but nonetheless, we'll sure have an idea of what anyone is talking
about in the future. Even though I would trade the knowledge for having no
reason to know this, it's pretty interesting.
I talked with Martin this morning. I know the updates are a pain. People
here really look for them but just the same, if it's between you getting
some rest or doing something you need to do or writing an update, choose
the former! We talked about next week and we'll all be around to spend
some time at the hospital so hopefully that's one less thing for you to
worry about.
Hang in there, Sandy. You've been incredibly strong. Hopefully, just a few
more week's more...
Please give me a call if you want to talk or if we can do anything for you
over the weekend. Just in case you don't know where it is: Jack and
Marianne at home: ...
This is for Grant:
We all miss you terribly. I can't wait to hear you coming around the
corner with your coffee beaker again. Also, there are some freshmen on the
floor who haven't learned the art of getting a cup of coffee while the pot
is still brewing and every time I walk in there I have to mop up a lake of
coffee. We needed to do a tutorial or something. I can't figure out the
balancing act you do.
I hope I'll be able to see you next week. Sandy's been keeping us updated
and we now have the FOG ("Friends of Grant") list. I think I told you - it's Friends of Grant.
Susana lives over there so she may drive over with me. Everyone will be
back from Seybold next week so I imagine you'll get lots of mail. Hey, let
me leave you with some killer stats: Atmosphere had 45,403 hits it the
last week alone. The IS guys for Adobe.com are going nuts. Don't forget:
it's also that killer time of the year when everyone is hitting the website
for Acrobat downloads to get tax forms with! Glad I'm not working over there!
Take care -- I'll talk to you soon.
Marianne
____________________________________________________________
SUBJECT: Grant Saturday April 14
Dear Friends,
He's much the same as Friday -- many things stable and some even
improving, though he is still in the coma. His blood sugar is
back to normal levels, so they've taken him off the insulin.
His platelets are okay now, so no transfusions.
He got his second plasmaphoresis Saturday, so he may need some blood Sunday.
As of Saturday night we hadn't got any cultures back from the blood they took Friday --
checking for infections -- but the doc said that may mean things
are just not growing, and that would, of course, be good.
He had a fever Friday night and Saturday in the 101 range, but it was down to 99 by
the time I left the hospital Saturday night.
The docs say "things seem to be moving in the right direction"
-- though there is still the small matter of the COMA...
Thank you all so much for your wonderful emails. I think his
eyes get kind of softer when I read them to him. Sometimes
I think he smiles a little. I hope I am not dreaming. It is always
a shock when they lift his eyelids and there's no focus at all.
I am deeply touched by the depth of feeling being shown for him.
I don't think he realizes how much he means to you all.
For me his light is just obvious, and I have always suspected that
everyone else MUST see it too. It is wonderful to have that
so warmly confirmed.
Love,
Sandy
____________________________________________________________
SUBJECT: RE: Grant MONDAY April 16
Dear Betty,
Gee, sorry about the machine! I never know when they're
going to show up. One day it was finished by 10 AM; the other time they
didn't start until about 5 PM.
I think Martin is going to call you re the schedule.
Thanks so much!
Sandy
-----Original Message-----
From: Betty
Sent: Monday, April 16, 2001 9:29 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant MONDAY, Apreil16
Sandy,
thanks for all the info.
Went into see Grant at noon. Brought him a Dave Barry book. Thought it
might cheer him up I remember the Head Smash Inn Story.
Unfortunately we didn't have time to read, as the giant plasma machine was
there and the nurse said it would not be a good time.
I can come tomorrow, unless someone else is scheduled.
Hope you had a good day at school
Love, Betty
____________________________________________________________
SUBJECT: Grant Monday April 16
Much the same today -- this is good. The blood cultures came back
negative, so no new bugs! And the staph is under control. His temp is
consistently around 100 -101, so the docs aren't worried; they say
that's just "the syndrome" (the ADEM, I guess). [ADEM = acute disseminating
encephalomyelitis of the brain stem, which is what they think he has]
He's still comatose, but both Leslie and I thought he looked better
somehow today. Less labored breathing, more relaxed.
All the other vital signs are also good and strong, so all in all, a good
day.
Sandy
____________________________________________________________
SUBJECT: Grant Tuesday April 17
Day 17 of coma -- easy to remember because he fell asleep on
April 1. He's pretty stable. Slightly elevated white blood count,
temp above 102 this evening. He seems to run a higher temp in the
late afternoon every day. Trach oozing seems under control -- finally!
And no transfusions today. He gets the fourth plasmaphoresis tomorrow.
Today when I raised his arm in my lame attempt to imitate the
physical therapist, he went into a really long (30 sec at least)
spell of what seemed to me to be pain, rolling his shoulders,
grimacing -- Leslie said she thought he was coughing.
Anyway, whole lotta sustained movement, even if it was just reflex.
Love,
Sandy
____________________________________________________________
SUBJECT: RE: Benefits
Hello Valerie,
I talked to the billing people at the hospital, and they gave me some
answers about how they will bill for the hospital, anyway. (I don't think
their bill includes the doctors, or the ambulance service.) The hospital will bill
Aetna first, then the hospital will bill Blue Shield for the balance, and the
hospital will receive payment directly from the insurance companies. This is fine
with me.
Does this sound right to you? Thanks for any other info you can glean!
Sandy
-----Original Message-----
From: Valerie (HR person at Adobe)
Sent: Wednesday, April 18, 2001 1:32 PM
To: Sandy LaFave
Subject: RE: Benefits
Hello Sandy,
I will get back to you by tomorrow with answers to the below. I am going
to contact Aetna directly on some of your inquires since this was an
emergency hospital admittance and I'm not familiar with their billing
process in that instance.
I will let you know as soon as I hear back from them.
Thanks,
Valerie
At 01:08 PM 4/18/2001 -0700, you wrote:
>Dear Valerie,
>
>Thanks so much for writing to me. I'm Grant Munsey's wife. He's been in
>intensive care for 18 days, and the doctors are talking in terms of
>additional WEEKS in intensive care.
>
>I am beginning to receive bills and even got a check from Aetna for
>the ambulance, but I am not sure what to do next. The bill from the
>ambulance service was about $825 but the Aetna statement said the
>"negotiated charge" was only around $625. Aetna sent me a check for
>$500 or so, because some of the items weren't covered, and they said
>they pay 90%. So do I now owe the difference between the check
>amount and the original charge ($825), or between the check amount and
>the negotiated charge? Is there always going to be this difference
>between the charge on the statement and the "negotiated charge"? In
>general, should I ignore the charge on the statement and pay attention
>only to the negotiated charge?
>
>Does Aetna always work by sending checks to us rather than to the doctors or
>the hospital? I'd much rather Aetna pay them directly.
>
>What percentage of charges does Aetna usually pay? Does it differ for
>different things? Is there a limit? The
>doctors are now talking about "thinking in terms of weeks" rather than
>days of hospitalization. I am worried that the total charges may exceed
>the limit.
>
>Grant is also covered by my insurance at West Valley College -- Blue
>Shield PPO. I gather this means Blue Shield will pick up the charges Aetna
>doesn't cover; e.g., if Aetna covers 90%, Blue Shield will pick up the other
>10%? Who coordinates the billing, then? Will the hospital bill Aetna,
>collect from Aetna, and then bill Blue Shield for any balance?
>
>I have never had to deal with big medical bills before, so this is all
>new to me. Thanks for any help you can provide!
>
>Sandy LaFave
>
>
>-----Original Message-----
>From: Valerie
>Sent: Thursday, April 12, 2001 9:12 AM
>To: sandy_lafave@westvalley.edu
>Subject: Benefits
>
>
>Dear Sandy,
>
>I believe Marianne mentioned I would be contacting you regarding Short Term
>Disability. I wanted to let you know that Adobe is going to go ahead and
>continue Grant's regular pay without you having to complete the Short Term
>Disability paperwork at this time. Please do not concern yourself about it!
>
>Additionally, let me know if I can help you with any issues with Aetna
>Insurance. I contacted Aetna yesterday and learned they did receive the
>information they were requesting from your doctor earlier this
>week. However if anything else comes up, don't hesitate to contact me.
>
>Sandy, we're here to help you in any way possible.
>
>Valerie
____________________________________________________________
SUBJECT: Grant Wednesday April 18
"Stable" is still the word. No changes today. Lots
of coughing again this afternoon, with lots of movement.
Fifth plasmaphoresis tomorrow.
We're hanging in there.
Sandy
____________________________________________________________
SUBJECT: Grant Thursday April 19
Last night (Wednesday) he spiked another fever (103) around midnight, but
it was down by morning. His temp was only 100.2 tonight (Thurs) when I left, so
I was encouraged by that. After the fever last night they decided to do
some more blood cultures this morning -- the debugging never ends.
We'll have results in a day or two.
He wasn't moving much on his own today. Leslie and I had a session with the physical
therapist, accompanied by a student nurse who was in the hospital for the
very first time. We are learning how to do range of motion, exercising
his joints, without upsetting all his tubes. Grant continues to educate ...
I didn't see any doctors today except in the early morning, so I haven't
got anything technical to report. To me, things look the same -- excellent
vital signs, except for the fever.
Thanks so much for all your wonderful emails and support. Today was especially
tough for me -- Grant was moved to a new room with better lighting, and I
can see much more clearly how his muscles have shrunk -- although he hasn't lost
any weight. It is going to take some time and effort to get his strength back.
Day 19 of coma today -- the docs say we may see results from the plasmaphoresis
by May 1. I hope they are right.
Love,
Sandy
____________________________________________________________
SUBJECT: RE: Grant Thursday April 19
Dear Joe,
I got a really nice e-card from Meredith and an email from Chris [Joe's kids]. Isn't
the net great? I'm sending another update today -- very distressing conversation
with one of the docs last night.
-----Original Message-----
From: JoeLaFave (brother of Sandy)
Sent: Saturday, April 21, 2001 3:53 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant Thursday April 19
Dear Sandy,
Diana and I look forward to your updates. Stable is good. It appears the
MRSA is under control, vital signs are good and temperature is about where it
should be given the nature of the disease.
As the doctors said three weeks ago, it will take time for the disease to run
its course. It will also take time for Grant to get his strength back. No
one can sleep for three weeks and not lose muscle tone and mass. This has to
be very hard on you but remember time is your ally not your enemy.
You can tell Grant that I'm building a website to advertise my consulting
business. AOL has an idiot proof method for building websites, still I find
this a daunting task.
Last week, I added another 64 Meg of RAM to my desktop computer. This task
involved installing a DIMM. The DIMM is supposed to just "snap" into place,
well it doesn't. It takes about 500 psi (pounds per square inch) to push the
card down far enough to "snap" it into place. Of course, the one slot where
I could insert the DIMM was obstructed by other components, large immovable
pieces of metal, and delicate, important looking cards. Eventually, with
about two cubic inches to work in, I was able to exert sufficient downward
pressure on the DIMM, without breaking it, and corresponding upward pressure
on the lock to install it. I now have 160 Meg of RAM, enough to run every
program I own simultaneously and watch the Bloomberg report.
Diana's last day on her old job is Thursday. She starts the new job on
Monday. We plan to go to Vermont for the weekend and kick back in front of
an open fire. I'm afraid I've turned into New Englanders. Many time of the
year I would rather be in Vermont than Cancun.
Hope all continues to be stable or better.
Love,
Joe & Diana
____________________________________________________________
SUBJECT: Grant Saturday April 21
Dear Friends,
I am really scared. Grant seems the same today as Thurs and Friday:
better in some ways, even. The nurses all say his lungs seem much
clearer, and his temp hasn't been doing anything alarming.
He got more blood yesterday (Friday), so I guess there was a problem
with his platelets; but that's happened before and no one was
too upset.
But the infectious disease doctor -- whom everyone seems to
respect a lot and is always called "brilliant" -- spoke with us last
night very grimly. He said he was "very discouraged":
he thought the plasmaphoresis should be showing signs of working
by now, but that Grant was still "totally unresponsive",
that his recovery "would be a medical miracle". The doc is concerned
about the length of time Grant has been sleeping and the effects
on the myelin layer of his motor neurons. The myelin is like
insulation that makes the motor signals travel quickly from the
brain to the muscles. ADEM is a "demyelinating" condition -- though
he also said lost myelin can regrow. So far Grant shows no voluntary movement
at all, and the doc says he should, but the signals seem completely blocked.
This doc was talking about "indefinite coma", requiring
long-term maintenance on the respirator in a nursing home
or convalescent home.
You can imagine how I slept last night; I was in no shape to
mail you all an update, sorry.
BTW, this was the very SAME doctor who has been telling us
consistently (in person and via Grant's primary care doc) that Grant
needs to get through this four to six-week timeframe without
complications and the ADEM can be expected to run its course.
Can you say "schizophrenic"??
I thought I was scared before ... Please, anything you can say to
HELP ME NOT TO GO CRAZY would be hugely appreciated. The nurse said
"Oh, the doctor has to say that, to cover himself; doctors always
do that." DO they?? As I said, Grant seems no different: still
comatose, but everything else seems to be holding well. God, this is awful.
Sandy
____________________________________________________________
SUBJECT: Re: What kind of physical therapy?
Dear Joe and Diana,
I am confused because the neurologist (another guy altogether) seems
to be the one in charge of the treatment now anyway. The neurologist is
consulting with supposedly the best ADEM doc in the world, at UCSF.
The plasmaphoresis is THEIR plan.
I have a feeling there is some weenie-waving going on between the infectious
disease doc and the neurologist; they have consistently had somewhat
opposite things to say. The neurologist was Dr. Gloom and Doom in the
beginning -- now he's all chipper, while the ID doc was very optimistic
at first, and now he's all depressed.
Re the physical therapy: the PT showed us how to do range of motion on his
neck, fingers, elbows, shoulders, ankles, hips, knees, etc., and we've been
doing that twice a day (sometimes three times). Is that the physical therapy
you mean, or should we (or someone) be doing more? It takes about half an hour
to do all the stuff they showed us. I'm glad to hear that Diana thinks it's
important, because I do too. You never know how the connections are going
to get re-ignited. Today we did the exercises in rhythm while playing Sousa
marches, and I had the feeling Grant was in on it.
! I have done the exercises so often that one of the nurses thought
I WAS the physical therapist. Anyway, my understanding is that the joints
are the number one priority. But can we do anything about the muscle tone?
The doc said that's controlled by the brain. But I don't see why you couldn't
you get the brain working on the muscle tone issue by reminding it via the
muscles.
Love,
Sandy
-----Original Message-----
From: JoeLaFave
Sent: Sunday, April 22, 2001 3:00 PM
To: sandy_lafave@westvalley.edu
Subject: Re: Grant Saturday April 21
Sandy,
I'm glad you heard from Meredith and Chris. All three children have
expressed concern about Grant's condition.
Here is what Diana and I have to contribute in regard to your doctor's
comments. Diana tells me that doctors do sometimes project the worst case
scenario to cover their ass. However, this doctor seems to have changed his
tune, indicating he doesn't have a clue about what's going to happen next.
Diana has two suggestions: First, get a second opinion from another
infectious disease doctor in another hospital, like Stanford. Second,
increase Grant's physical therapy from three times a week to twice a day.
This will probably mean retaining a full time physical therapist.
Also, don't let them take down the isolation. This is working well for Grant
and is a normal precaution given the circumstances. Diana was surprised he
was not isolated from day one.
Our thoughts and prayers are with you,
Joe & Diana
____________________________________________________________
SUBJECT: Grant Monday April 23
Dear Friends,
Thanks for all your encouraging words.
Last night we got a second-hand report (via a nurse) that one of
the docs (the pulmonary guy) said he thought Grant was responding to
pain. The nurse said this was a good sign. Today another nurse
said Grant's pupils were responding better to light. This morning
I was with him during the plasmapheresis and he grimaced when the
dialysis nurse stuck him in the thigh. I don't dare be encouraged
by all these things -- but maybe these are the "twinkles" that the
ID doc was looking for on Friday and couldn't find.
I haven't talked to any docs today yet, but I'd kind of like to
hear this sort of thing directly from them, of course. I'd especially
like to hear from the neurologist if he's noticed anything.
I don't know what to think of the mouth movements yesterday (apparently
in response to my request). I hardly dare hope. My brother Dan saw it too.
He told his wife Grant was responding because "Sandy was yelling and slapping
him around". So of course I tried yelling and slapping him around again
today but he seemed more tired, less responsive. But that may well be
the effect of the plasmapheresis this morning.
I feel pretty unequipped to evaluate any of this. If there are
signs of improvement, they are very subtle ones. Because I see him
every day, I don't notice many changes from day to day. But
the nurses say they think he may be improving neurologically.
The room he's in is very hot and stuffy, so
I brought in a fan from home, and the nurses are letting me turn
it on illegally. They said the hospital's "engineering" staff
is supposed to check out any new electrical equipment and approve it
before they can run it, but nobody from engineering was around
yesterday -- Sunday -- and I think they've
decided not to call it to anyone's attention. Grant REALLY prefers
it on the chilly side, and I can't help but think he's more
comfortable with this fan on.
His temp in the last 24 hours has ranged from normal to only 101.4.
All the other vital-sign stuff seems excellent, too, as far as
I know. The primary care doc has been off this week-end (for the
first time since Grant got sick), so I haven't heard about
last week's blood cultures -- but there are no new IV
bags in sight. He may get another transfusion tomorrow.
We have been playing John Philip Sousa marches (which he likes), LOUD,
during our exercise periods, stretching and rotating to the beat. I
was afraid we might be disturbing the nurses -- you can hear the music
as soon as you come into the unit -- but they said it was fine.
These nurses in his unit are really wonderful.
So maybe there will be official confirmation of what has up to now
only been hearsay good news??? Could it be?
Love,
Sandy
____________________________________________________________
FW: SF Gate: Aptos survivor of amoeba baffles scientific world/Virulent organism
lies dormant in man's brain
-----Original Message-----
From: nobody@sfgate.com [mailto:nobody@sfgate.com]
Sent: Tuesday, April 24, 2001 3:28 PM
To: Sandy LaFave
Subject: SF Gate: Aptos survivor of amoeba baffles scientific
world/Virulent organism lies dormant in man's brain
This is the first article
----------------------------------------------------------------------
This article was sent to you by someone who found it on SF Gate.
The original article can be found on SFGate.com here:
http://www.sfgate.com/cgi-bin/article.cgi?file=
/chronicle/archive/2001/04/21/MN147116.DTL
----------------------------------------------------------------------
Saturday, April 21, 2001 (SF Chronicle)
Aptos survivor of amoeba baffles scientific world/Virulent organism lies dormant in
man's brain
Matthew Taylor, Pamela J. Podger, Eric Brazil, Chronicle Staff Writers
Sonoma -- No one knows why Hayden Dryden survived an attack by the same
rare amoeba that killed a Rohnert Park toddler earlier this month and an
Orange County boy in March.
The Aptos man's ability to cheat death even as the virulent organism still
lies dormant in his brain is another riddle facing scientists and doctors
studying a pathogen identified just 11 years ago.
But even as public health officials scramble to determine just how the
three people contracted amoeba Balamuthia mandrillaris they insisted that
the deaths are isolated and the public need not fear an outbreak of a
disease that attacks the brain and is almost always fatal.
""This is rarer than rabies, and people should not feel very concerned,""
said Dr. Carol Glaser of the California Encephalitis Project in Richmond,
which specializes in the study of brain-swelling disorders. ""This is a
rare entity in a rare syndrome.""
The unusual organism killed 3-year-old Aletha Leigh Willis on April 11,
three weeks after she came down with flulike symptoms. And a 7-year-old
Orange County boy died from the amoeba in March, but health officials
there refused to discuss the case.
But Dryden, a 69-year-old former professional trumpet player, has so far
survived his bout with the organism that first attacked him in 1996.
The experts ""are totally, totally confused,"" said Jackie Dryden, his wife
of 37 years. She said experts at the federal Centers for Disease Control
and Prevention in Atlanta told her Dryden is the only person known to have
survived the amoeba.
Their bewilderment underscores just how little science knows about
Balamuthia. The organism was discovered in 1990 in a mandrill baboon by a
researcher -- who years later was the man who diagnosed Dryden. Unlike
many amoebas, Balamuthia is not a parasite and does not need a host to
survive.
Since its discovery, the organism has been diagnosed in about 100 people
around the world, including some 30 people in the United States.
Case studies printed in the Pediatric Infectious Disease Journal indicate
that it afflicts younger people, typically children under 15. Cases have
been reported in Argentina, Australia and Venezuela, among other
countries, and in Texas, Florida and California.
COMPROMISED IMMUNE SYSTEMS
Dr. G.S. Visvesvara, a protozoologist with the CDC, said victims tend to
have compromised immune systems, aiding the organism in its deadly course.
""Initially, we believed that all the cases -- and I have had the
opportunity to look at most of them -- were in the very old or very
young,"" he said. ""Now we are seeing a few of these cases in (AIDS
patients). So it's probably immunity-related. People with normal immunity
are able to shake it -- maybe, maybe not.""
Dryden was infected with Balamuthia in August 1996, his wife said. Doctors
at Dominican Hospital in Santa Cruz at first thought Dryden had suffered a
stroke after losing control of his arm.
Only after five months of tests, including two biopsies, CAT scans and a
laundry list of diagnoses, did a parasitologist with the Centers for
Disease Control recognize the amoeba thriving inside him, his wife said.
By the time doctors realized what they were dealing with, the amoeba had
ravaged Dryden's brain. The small lesion they discovered in August had
engulfed his brain by the end of November, plunging him into a coma that
lasted five weeks, Jackie Dryden said.
""Imagine them as an abyss all over your brain with tissue actually being
destroyed,"" Dryden said. ""He was having what (doctors) called rigors. His
whole body would just start vibrating and jumping up and down on the bed.""
The doctors, who believe that Dryden contracted the amoeba while repairing
a plugged shower at his home, pumped him full of four different
antibiotics in a blind effort to stave off the amoeba.
Dryden awoke from his coma on New Year's Eve 1996 and inexplicably began
regaining his health.
""He slowly got better and better,"" his wife said, eventually returning
home in 1998. But he could not walk and was incontinent, his wife said.
And though doctors said he would never walk again, Dryden has begun taking
his first shaky steps.
""He is in no discomfort and is in good spirits,"" Jackie Dryden said.""He is
e-mailing and walking. He's playing his trumpet. He's even in a little
band.""
But Dryden and his wife live with the constant fear that the Balamuthia
lying dormant in his brain can return at any time, and without warning.
""We don't know if they are sitting there waiting,"" his wife said. ""We
don't know what is going on up there.""
Aletha Willis was not so fortunate.
The bright, talkative girl first exhibited flulike symptoms on March 20.
She had two seizures at Santa Rosa Memorial Hospital, where doctors
suspected meningitis, and was taken to Children's Hospital in Oakland.
She fell into a coma and died April 11, held in her final hours by her
grandparents and legal guardians, Frank and Teresa Peters of Rohnert Park.
Aletha's grandparents said doctors told them a biopsy of tissue taken from
their little girl's brain revealed she died as a result of the organism,
which apparently caused encephalitis.
PRELIMINARY TESTS
Health officials do not know how Aletha contracted the amoeba. They
suspect it may have infected her at a duck pond where she played, dust
from a flea market she attended almost every weekend or even the aquarium
in her grandparents' one-room apartment.
Norma Ellis, Sonoma County director of public health nursing, said local
officials are working with state and federal authorities on the case.
At the urging of doctors, the girl's grandparents, who were her legal
guardians, consented to having brain tissue samples sent recently to the
CDC to confirm preliminary blood tests on the girl.
A fund in Aletha Leigh Willis' name has been established at the Exchange
Bank in Santa Rosa. Donations may be sent in her name to Exchange Bank,
P.O. Box 403, Santa Rosa, CA 95402.
E-mail Pamela J. Podger at ppodger@sfchronicle.com, Matt Taylor at matay
----------------------------------------------------------------------
Copyright 2001 SF Chronicle
____________________________________________________________
SUBJECT: Grant Tuesday April 24
Dear Friends,
I'm getting all kinds of mixed signals from the docs.
Today I had another frustrating encounter with the
big cheese infectious disease doc. Kept shaking his head,
dropping Grant's arms down. I hopefully said the
neurologist had told us not to expect anything until a week after
the end of the plasmapheresis (May 2). He replied, still shaking
his head, "Yeah .. believe HIM."
The pulmonary doc, meanwhile, continues to be cheerful and
is able to elicit what he says is non-reflex pain response
("higher brain function") from Grant. HE says all the physical
stuff is now under control and Grant seems to be getting ready
to wake up.
The neurologist is mum -- "no significant change," according to him.
The primary care doc (an internist) says Grant is "much better"!
My view:
Grant seemed okay to me when I saw him in the early morning --
I did the range of motion exercises in my non-professional
way and he moved some (maybe that's the pain response).
In the afternoon, when Doctor #1 (the ID specialist) was there,
Grant WAS pretty out of it. I tried
to tell him Grant is different at different times of day, but
he didn't seem to be paying attention. Maybe he was just trying
to be perfectly non-committal.
Anyway, as far as I know, Grant is now healthy as a lumberjack,
except for not being able to wake up.
Love,
Sandy
____________________________________________________________
SUBJECT: RE: I spoke with the primary care doc
April 24, 2001
Hi Martin,
She said [infectious disease doc] is always like that, and that as far as she knows,
he just doesn't want me to feel betrayed if things don't go well.
He really IS very disappointed that nothing has worked so far, but
that's because he's usually the hero. He is actually more interested
in Grant's case than in any other case she has ever seen him involved with.
It's hard to get a doc to say anything bad about another doc, but she
went so far as to say he needed to work on his social skills, and
that his message was way too skewed to the negative.
She also said [pulmonary doc] doesn't really know either. The pain response may be
reflex, or maybe not. (This sounds a little evasive to me, but
I think that's the most we're going to get from her.)
All in all, she reinforced the view that it's too early to say
anything, that different personalities put different spin on
things, etc., but that in the end, NOBODY KNOWS. This seems to me
to be the truth.
Thanks for all your help today. I get into an emotional train wreck
every couple of days.
Sandy
____________________________________________________________
SUBJECT: Thanks for your letter
Dear Barbie,
I was not upset that you cried; I appreciated it very much.
I don't understand why everyone isn't crying too.
Thank you so much for your beautiful letter. You are a
real "sister" to me.
Love,
Sandy
-----Original Message-----
From: Barbie (Sandy's sister-in-law)
Sent: Wednesday, April 25, 2001 4:14 PM
To: sandy_lafave@westvalley.edu
Subject:
Dear Sandy:
I am sorry that I cried when you needed a shoulder this morning. I hope
I didn’t make you uncomfortable. I see your grief and pain and I can't
help but hurt for you. I hope it is okay, I would much rather end up
crying with you than not to be there.
Last night I was thinking so much about you and Grant, praying that you
would get some sleep and that Grant would suddenly be unable to sleep.
These last few weeks, we have been assuring you that you are both in the
forefronts of our minds and also in our prayers; and I don’t know if it
is irritating, if you believe in God, or your thoughts on faith and
prayer, but that still small voice inside me kept impressing upon me to
write you a note today and tell you something that Johnna had said that
left me feeling more hopeful for Grant.
I’ll preface it with this; Johnna [her daughter] has a very strong faith in God,
unwavering. I don’t know if you have ever known anyone that seemed to
have a direct line to God, or at least had a very strong sense on
connection with a higher power but that is the case with Johnna and she
cultivates it, so that she only seems to get more and more in tuned to
that still small voice inside her. She starts every day with prayer, an
hour or two, and never misses it. Not the on-your-knees prayer, rather,
she writes it all down. She has journal type prayer books, every
request, big or small. It could be a bad mood she wants help with, a
difficult class, or it might be a huge petition like healing for Grant.
Because she has written her prayers for the last two years she has a
record of when she asked for something, when God seemed to speak
something clearly to her, when He answered her specific requests. She
has a history book of big and small miracles. I look up to her, I guess
and have come to believe that if God impressed something on her, it
would come to be.
On Monday evening I asked Johnna if she had slept all right on Sunday
(we had stayed with you that night). She said she was fine, slept well,
but that something strange had happened in the night. She had woken
abruptly in the middle of the night and had this very strong sense that
God wanted her to pray for Grant. She has been praying for him every
day, and it wasn’t the kind of waking up where your mind naturally goes
to the big issues as you are waking up. She said it was very different,
she woke up abruptly from a deep sleep and it was as if someone had
turned on the light, shook her and said “wake up, now, and pray, right
now for Grant”. And it wasn’t “pray for healing,” like she had been
doing, it was “pray that he will not be scared when he wakes up”.
Last night Danny told me that you asked him if he noticed the pictures
in Grant’s room and that on Monday the doctor had said, “Grant may wake
up and be scared”. My faith is weak; I have to admit I do more “hoping”
than believing. But I am convinced in Johnna’s faith and that God would
not have awakened her in the night with such a specific request if it
were not what He wanted us to hang our hopes on. I hope it will give
you hope, especially combined with the positive words from the pulmonary
doctor. I mean, if we can choose whether to believe in the ""not sure,
don't know"" or the seemingly miraculous ""coincidences"", why not the
latter?
Sandy, I am so sorry to see the bits of hope dangled in front of you by
talented and gifted medical professionals and then torn away just as
quickly. I am so sorry for these weeks that have turned your life
upside down. I hope and pray that you will be reunited with Grant, and
soon. I hope that you will have a better day today, and better yet,
tomorrow. That your tears will soon turn to tears of joy. That your
heart will find healing peace and comfort. God bless you.
Love,
Barbie
____________________________________________________________
SUBJECT: Grant Thursday April 26
Dear Friends,
Grant remains wonderfully stable, but I have
had a couple of bad days. I keep running into the
infectious disease specialist, the brilliant one who is "very
discouraged." (Why is HE the only one I run into???)
Yesterday he said nothing at all. Today he said more than
usual: that he was still very discouraged, that Grant
should have shown some response to the treatments by now,
that he sees no signs of improvement whatsoever,
etc., and that the way Grant's reflexes are today, he is
somewhat MORE pessimistic than before, though he grudgingly
acknowledged that we are still in waiting mode. He reiterated
the worry about the demyelinization: he said perhaps the
ADEM swelling HAS already gone down, but it's left too
much damage ... And then the clincher: "You can take
comfort that he's not suffering. I'm sure he's not
suffering." This was today.
DAMN! Last night, I felt pretty good after seeing Dr. C.
According to her, [infectious disease doctor] simply never says anything
positive unless he's really sure. But now Dr. C is gone
to a conference until Monday, so I don't have her around
to ask about today's conversation with [infectious disease doctor]. I haven't
seen the neurologist in a week or so either.
On the positive side, Dr. C spent a lot of time last night
talking with me. She showed me Grant's case log book,
and noted how on April 9, he had thirteen problems listed,
"all of which could have killed him." Stuff like the anemia,
high fevers, high blood sugar, bad electrolytes, MRSA, etc.
And as of last night, he had only two: the coma, and a lung infection ("regular"
staph) for which he is receiving antibiotics and which
doesn't seem to be getting worse. In other
words, he's beaten a lot of things already -- not neurological
things, but still, a sign his body is fighting for health.
Kathy also reinterated the claim of the SF Big Cheese neurologist
that the plasmapheresis had a 60% chance of working (where
"working" means reducing the inflammation), and we
should see effects within a week or two. (But if [infectious disease doctor] is
right and the swelling may ALREADY be gone, and Grant's condition
isn't changing because his brain stem is permanently damaged ...
AARGH!)
Dr. C and the neurologist went to a conference on migraine
yesterday, where there were a dozen or so well-known neurologists,
and she asked them for input on Grant's case. She said they got
some helpful advice. One proposal is to try cytoxan, a drug used
in chemotherapy to suppress the immune system -- this if the
tests show the inflammation is still there. Grant will have another
spinal tap soon and another MRI. I would like some GOOD news!
I am very tired. You have all been so wonderful to me I hate to
be a wuss and keep asking you for even more words of encouragement.
But if there's anything you can think of, please send it on.
Your notes really really help me. Send words for Grant, too!
I think Grant might need encouragement: [infectious disease doctor] doesn't
even bother to leave the room before talking
negatively about Grant's condition (and HE's the one who said
Grant could probably hear!).
Love,
Sandy
____________________________________________________________
SUBJECT: Grant Friday April 27
Dear Friends,
The coma has now lasted 27 days. Grant is stable, some fever
last night and this evening (101.7). Because of the fever,
they decided to do some more cultures. Most things are
the same, though Grant seems more stiff and slightly
more spastic today -- it's harder to bend his fingers and joints.
He is often moving his mouth and bending both his legs inward.
Today the social worker started talking to me about where
Grant will go if he is still comatose in a couple of weeks
-- a weird and traumatic conversation.
The ICU won't really be appropriate if he's over all his
infections and just needs tube feeding and ventilator.
Where do otherwise healthy comatose people live? Answer:
"Sub-acute care" facilities. The social worker even had brochures.
I am supposed to visit some of these places
and pick one if things don't improve by next week.
No doctors around today. They did a spinal tap this morning
but I haven't heard any results yet.
Love,
Sandy
____________________________________________________________
SUBJECT: Grant's spinal fluid numbers
Dear Srini,
Here are the numbers for the three spinal taps.
Any info would be greatly appreciated!
Thank you so much.
PS: The chili was GREAT. I'll have to get the recipe.
Sandy
March 31: (initial presentation, pre-coma)
CSF GLU (REF 40-70) 63
CSF PROT (REF 12-60) 69 H
CSF COLOR colorless
CSF appear clear
CSF RBC 0
CSF WBC CT (ref 00-05) 80 H
CSF SEGS 7
CSF LYMPHS 92
CSF MONO 1
April 10: (after steroids, mid IVIG)
CSF GLU (REF 40-70) 147 H
CSF PROT (REF 12-60) 33
CSF COLOR colorless
CSF appear clear
CSF RBC 1
CSF WBC CT (ref 00-05) 31 H
CSF SEGS 1
CSF LYMPHS 99
CSF MONO 0
April 27: (after plasmapheresis)
CSF GLU (REF 40-70) 58
CSF PROT (REF 12-60) 71 H
CSF COLOR colorless
CSF appear clear
CSF RBC 1
CSF WBC CT (ref 00-05) 06 H (does this represent improvement or ...
?)
CSF SEGS 9
CSF LYMPHS 90
CSF MONO 1
____________________________________________________________
SUBJECT: Grant Sunday April 29
Dear Friends,
Grant's temp was up to 103 again today, but it came back down pretty
quickly, apparently, with Tylenol and the cooling blanket. I talked
to one of the doctors (Dr. [infectious disease doctor]'s partner), and he said this
fever might be one of several things: the syndrome, the
pseudomonas infection, or a reaction to the Vancomycin. So he's
discontinuing the Vancomycin. He said he hadn't decided exactly
what to do about the pseudomonas. They call it a pseudomonas "infection"
-- but of course I had to look it up on the net -- and it CAN cause
pneumonia. But I don't think Grant has pneumonia:
his oxygenation is close to 100% all the time, and he's not
coughing up a lot of gunk (though there's more now than a few
days ago). All the vitals are stable and "within normal parameters,"
as Data would say.
Neurologically nothing seems to have changed. In the last week,
I've been seeing more eye movements, but nothing that could be
definitely called voluntary.
The nurse showed me the report of his latest spinal tap. His spinal fluid
white cell count is way down (to 6), close to normal. I don't know what
that means, but it's a dramatic change compared to his earlier
numbers (80 and 31). Tomorrow I'll probably talk to Dr. C, and
get some kind of interpretation. Maybe the plasmapheresis did
something?
My mom is here now; she arrived Friday afternoon. It's nice to
have her here. She's doing some cooking and generally holding down the
home front, while I visit Grant and go to school. She visited Grant
yesterday and her comment was "I thought he'd look sick." (She's
spent her share of time in hospitals and seen quite a few sick people.)
Peter, one of our little friends, who is in kindergarten, wrote the
following card (our street name is Shady Avenue):
GRANT GRANT GRANT
get
to
Shaty
Avnoo
SOON
My sentiments exactly!
Love,
Sandy
____________________________________________________________
SUBJECT: Martin and the visiting schedule
April 29, 2001
Dear Kathy,
Thanks so much for visiting Grant today. The nurse told me you
had been in.
Martin has been organizing the schedule of people reading
to Grant on weekdays, and I gave him your email address, so he may
be contacting you to set up another time. There are about 5 people
involved: Martin himself, Betty, you, Marianne
(Grant's assistant from Adobe), and Greg (Grant's boss). If
you could do an afternoon hour or so sometime this week or next
weekend, that would be great.
If you want to link up with Martin, his email address is
...
See you tomorrow, and thanks again!
Love,
Sandy
____________________________________________________________
SUBJECT: Grant Monday April 30 -- he appears to open his eyes
Dear Friends,
We saw Grant apparently OPEN HIS EYES today,
about half way, and keep them open,
as if paying attention, for periods of several seconds on end.
The neurologist was very happy about the spinal tap,
and the eye-opening. According to the nurse, the
neurologist said Grant seemed "much
more responsive." The nurses noticed the increased
responsiveness last night.
The neurologist put Grant on a new steroid specifically
to reduce brain swelling. This evening Grant seemed more
tired, and the new drug is also raising his blood sugar, so he's
getting small amounts of insulin as needed. He had a fever
of 101.4 when I left tonight -- not too bad, I guess.
He sure SEEMS more "with it" the last day or so.
Come on, Grant!
Love,
Sandy
____________________________________________________________
SUBJECT: Grant May 1 -- More plasmapheresis next week
Dear Friends,
Here's the latest plan. The doctors had a pow-wow today.
They were "very impressed" with Grant's latest spinal tap
and general increased responsiveness yesterday.
Dr. C says even Dr. [infectious disease doctor] was impressed (though I got
a somewhat different story from the nurses). Anyway,
the neurologist says signals are definitely getting through
the brain stem (YAY!) although there's quite a lot of "static".
They have decided to follow a protocol developed by a
big cheese neurologist at UCSF: Decadron, another steroid
specifically to reduce brain swelling (used in tumor cases), and
another round of plasmapheresis starting in about a week.
They estimate at least another three weeks (!) before we see
anything like ordinary recognizable voluntary response.
Then the "recovery" -- I love it when they talk like that! -- should
take at least another four months, some of which will have
to be spent in a "SUB-acute care" rehabilitation facility (I think
I called it an "acute care" facility in a previous email -- that
was incorrect).
The docs reiterate the importance of stimulating him: talking to him,
reading to him, playing music, etc. They say it's especially
important during the next three weeks. He's still comatose and
spiking fevers (103 again yesterday, more cultures today) --
in other words, very sick; and the plans I've related
are the best-case projections. So keep those cards and
letters and CDs and books on tape, etc. coming!
I can't begin to express how grateful I am for the support and
encouragement you all have been giving me. So many people --
friends and casual acquaintances and complete strangers -- have been so
unfailingly kind that I almost feel I've had a little taste of
the fellowship of heaven that believers talk about. I get
a big lump in my throat thinking about all your
love and generosity and willingness to listen to my fears and
give me hugs and e-hugs, in the midst of this prolonged nightmare.
I hope I don't forget these lessons when things are better.
Love,
Sandy
____________________________________________________________
SUBJECT: Grant Thursday May 3
Dear Friends,
I didn't send an update yesterday because there wasn't anything
new. Tuesday night Grant was coughing a lot, and there was a
brief scary "ER"-like commotion around his bed while two respiratory
therapists and the nurse gave him some kind of super-suction.
They said it might have been a "mucus plug". Anyway, whatever
they did seemed to fix the problem. He has been breathing well
since then. (I have just looked up the word "mucus"-- vs the
word "mucous" -- and discovered they are different! The first is
a noun, the second an adjective. ("Thanks for sharing that, Sandy."))
He's still running fevers (up to 102-103), which are controlled
by Tylenol and the cooling blanket (working fairly
reliably now). The docs don't know why he's having the fevers:
same story, ADEM or infection? They put him on another antibiotic
just in case, and when I left today, they were drawing blood again.
I have to see the social worker again tomorrow to talk about
sub-acute facilities, insurance bills, etc.
I am tired and discouraged that I haven't seen any
eye-opening or increased responsiveness since Monday. I
was hoping things would take a turn for the better (which
they did, of course) and then just STAY better. For
the last couple of days, he's been much
like last week: lots of mouth and eye movements. Not sicker,
not better. Thanks to Marianne for the worry dolls; I can use
them.
You all keep me afloat. Keep hanging in there and I will, too!
Love,
Sandy
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