A gathering of Madeleine's friends will be held in Manchester,
Saturday, 17 January, 2004, 2:00 P.M. at the Mark Addy pub in Stanley
Street, Salford. Anyone who considered him/herself a friend of Maddy
is invited to attend.
The Mark Addy is child-friendly until 7:00 P.M.
For those coming by train, Manchester Picadilly is the closest
station.
Please RSVP to dillo@jackalope.demon.co.uk by Friday, 16 January.
Lizz Holmans
The following obituary will be appearing in the Philadelphia Inquirer and Ottawa Citizen. As noted in the last paragraph, RSVPs for the memorial service should be sent to Elizabeth Garner.
--Angus
Dr. Madeleine Judith Cecelia Page, on December 15, 2003, in Philadelphia, Pennsylvania.
Madeleine (Maddy) Page, was born in England in 1945, educated at York University, Toronto, Canada, Harvard and Widener University in Philadelphia where she received her doctorate in Psychology.
Madeleine became a psychologist later in life after a successful career in organizational consulting in Ottawa, Canada. Undertaking a doctorate in her fifties was a challenge, but also the fulfillment of an enduring commitment to understanding and contributing to healing people through compassionate psychotherapy. She had a gift for seeing the essence and possibilities in people and sharing it with wit and empathy.
She was passionate about many things: animals, of which she had many, gardening, neighborhoods, coffee, music and reading in a wide spectrum. These interests were the source of her wide circle of friends. A celebration of her life will be held at the Ethical Society, 1906 South Rittenhouse Square, Philadelphia on Jan. 10 at 2:00 p.m. Further information is available at http://xcski.com/blogs/maddy . For planning purposes, please indicate your intention to attend by calling Elizabeth Garner, Seattle, (360) 568-7516 or e-mailing eliz@eskimo.com .
From Elizabeth:
I just talked to Luce. Maddy is being cremated today, wrapped
lovingly in an extra-luxurious sheet from a friend.
Unfortunately, Emily, her beloved dog, crashed overnight, and her vet
thinks--in a stunning and sad irony--that she has leukemia. Emily
has now gone to join Maddy.
We can all be grateful that Emily hung on until now, as
Maddy many times said she could not bear the thought of
losing her. Maddy never had to face that. For Emily's part
it almost seems that once she sensed Maddy was no longer
here, she left, too.
Elizabeth
I'd like to encourage everybody to go to http://xcski.com/blogs/memorial and contribute your favourite Maddy memories and pictures. Instructions for how to do so are the first (bottom) entry.
A few moments before the end, we were all sitting around in Madeleine's room, arrayed on chairs and a cot around her bed. Luce, Jean, and Marla were talking about wilderness retreats up in Canada.
Madeleine's breath had been getting shallower and quieter for some time, and one by one we were beginning to pay closer attention to that when there was a pause. We gathered more closely around --- Jean and Luce holding her hands, Marla and I stroking her head --- and she took another breath. Jean told her that her soul was going to soar, and I just kept telling her quietly that it was okay for her to let go, that it was okay for her to rest, that it was going to be all right. She took two, maybe three more irregular breaths, and then she was still, at a few minutes before eleven, with all of us holding her and wishing her well.
She left very quietly, very peacefully. We'd all been prepared for something physically wrenching, but there was none of that. Just a winding down, with enough notice that we were all able to give her attention and comfort as the end came.
We'd called for a doctor in the early moments, when we weren't sure what was going on, but the resident who came was very deferential and non-intrusive. About ten minutes after Madeleine drifted off, she checked for a heartbeat, found none, and left us alone with her again. Two more hospital staff (nurses? aides?) came by a while later to answer questions and offer help, but again they weren't pushy at all. Because of the disease and the chemo it wasn't possible for her to donate her organs, so there was no need to whisk her away.
We had plenty of time to cry and say our goodbyes and put things in order. Madeleine looked very much at rest --- skin smooth and soft and unlined, body in a position of repose. After she was gone, I told her she was beautiful, and told her it was going to be okay, and wished her lullabye and goodnight.
We packed up all our stuff and hers, and were out of the room by quarter to one or a little earlier. The cremation will be sometime soon, and I know Luce has said she intends to be there.
There's plenty more stuff to say, and questions to answer, and individual emails to respond to, but I'm going to go off to bed. I'm at Madeleine's house now, sitting at her dining room table, with classical music on the stereo, cats wafting through the room, and boxes and tins and jars of English food festooned liberally around. Tomorrow I'll co-ordinate a few things with Jean, check in again if necessary, and head home to Brooklyn.
Luce Nadeau and Jean Ogilve are deeply saddened to pass on the news that Dr. Madeleine Judith Cecelia Page passed away just before eleven pm, Monday, December 15, 2003. As you all know, Maddy chose to roll the dice and take the slim odds offered by aggressive chemo to return her to a productive life. She never wavered in her commitment to live, and never gave in. The complications that arose from the toll that chemo took on her body were eventually too harsh to stand.
Madeleine said she was afraid a few weeks ago. When asked what she was most afraid of, she said there were two things --- dying alone and leaving a mess. It was not dying itself that frightened her. She died surrounded by loving friends, and we told Maddy that from our experience of knowing her for more than 20 years, her messes are sometimes far less dramatic than they feel subjectively, which seemed to give her some comfort. As well, a number of initiatives she had initiated, including renewing her Canadian passport and getting her insurance sorted out had come to fruition, so her worries began to fall away.
Maddy has many times mentioned that the upside of this experience has been the outpouring of generosity, kindness, and attention that she has received from her friends. The magnitude and depth of love that came in her direction moved her to the core. She tended to keep her friends segregated by groups --- the electronic community, lists, dog-walkers, a few old friends, Widener, the therapeutic community, neighbors, etc. and many of us had not met one another. As we have come to meet each other over the last few months and share stories about our love for her we are experiencing a virtual community with her at the centre. When she spoke about this to a few of us recently, she said she was "overwhelmed" with this outpouring, and truly got from this that she was a deeply lovable human being --- something that had always been a struggle for her to believe.
She spent the last few days in a quiet room in Jefferson, with no medical interventions, the radio softly on her favorite classical station and with friends reading to her. Her friends were with her, many calling to talk to her. It could not have been more peaceful.
We are in conversation about how to celebrate her life, and allow us the opportunity to come together. We will keep you posted on this on the blog, but are tentatively looking at something in Philly January 10, and something in Canada in August where she has requested her ashes be buried in one of her favourite places in the beautiful boreal forest of Pontiac County, Quebec.
It has been such a gift to have known Maddy, and to have had the opportunity to be part of this amazing community.
With love, Jean Ogilve and Luce Nadeau.
From Angus:
No real news right now. She's calm, and quiet, but there's not much
change. We've just had dinner, and we're having some wine, and she's
at the center of it all.
We've been trying (not always with a lot of success) to keep off the
line, but I will try to keep updating every few hours --- say about
every three.
(I've now maddied one post to this list today, and anti-maddied
another. Clearly her spirit is still strong.)
--Angus
From Angus:
Not much to report right now.
Madeleine's breathing is a bit more labored, but there's no dramatic
change. We're still reading to her, soothing her, passing along
messages. Folks have been calling, and are welcome to keep doing so.
We'll pass along word when there's more news.
--Angus
From Angus:
Hi all.
As Kim said, we seem to be getting closer to the end.
We've read out the roll-call to Madeleine again, trading off. I think
we caught all the typos, but I repeated the alterations and
additions, just to be sure. We'll be reading it through another time,
at any rate. We're midway through a second read of Wake, but mostly
just chatting and murmuring and fielding calls and notes.
Jean brought us back a lovely picnic lunch from wholefoods a little
while ago, so Kim and Luce and Jean and I have all eaten well, and
the room smells wonderful and fragrant. Madeleine's resting
peacefully, and doesn't seem to be in any pain.
Thanks, everyone, for your thoughts --- by email, by phone, or just
through the ether. In a lot of ways, I'm pretty sure that it's harder
to not be here than to be here.
Take care,
Angus
From Kim Scheinberg:
I'm here with Jean, Luce, and Angus.
If anyone would like a chance to say anything to Maddy,
you should call today.
Angus or myself would be happy to speak to you, as well
as willing to hold the phone to Maddy's ear.
Maddy's comfort level is the same, but her condition
is worsening.
Rest assured, one of us is always holding her hand.
The number to call:
phone # 215 955 3461
-k.
From Angus:
We've all been resting the last few hours, it's morning now. They
increased Madeleine's pain meds a little overnight, and gave her
something to bring her fever down. Her temp is lower, and she
definitely seems more comfortable --- her breathing's less ragged,
and her muscles are less tense.
I checked email and read her the latest round of messages when we all
got up an hour or so ago, and then re-read some of the earlier ones.
I'll start in on the Finnegans Wake from the top in a bit. Right now,
there's a relaxed, mellow energy in the room --- Luce and Jean and I
have been sitting around, drinking coffee and eating yogurt, trading
stories and memories.
--Angus
From Angus Johnston:
Here's another update for insomniacs and folks on other sides of the world.
Marla went home a while ago, and Luce and Jean are sleeping right
now. I read Madeleine the last big chunk of the Finnegans Wake
chapter about an hour ago, and her eyes opened wide for the first few
minutes, then closed more fully than I'd seen them do for some time.
I noticed that Luce was snoring at about that time, so I think I may
have put them both to sleep. Not a bad thing, considering.
One thing I left out of the last note is the physical comfort we've
all been trying to give Madeleine --- holding her hand, and mopping
her brow, stroking her hair and her cheek. The last while we've had
the lights dim, and I've just been sitting quietly reading old emails
to myself and holding her hand.
I've read her all the messages that had come in for passing along the
last time I signed on. Harry, I also read her an abridged version of
your recent note to the list --- leaving in the thanking her for
being there for you part, leaving out the feeling bad about not being
able to be there for her. I've tried to do something similar for
everyone who's written saying they didn't know what to say.
Luce and Jean and Marla have made it very clear how important to
Madeleine the recent outpouring of love and support has been, and how
sustaining. She's carrying that with her now.
--Angus
From Angus Johnston:
Hello, all.
I'm here in Madeleine's room now. The drive down wasn't too bad, once
I got out of the city. Rain but not snow most of the way. One road I
needed had just been closed by the cops, which cost me half an hour,
but I got here.
Luce, Jean, and Marla were here when I got here, and still are. Sasha
has been here and gone since I arrived.
Madeleine's breathing is labored, and she's only minimally
responsive, but she's still here. I've read her all of the messages
that came before I left New York --- twice so far --- along with
eight pages of Finnegans Wake, and a couple of things I brought.
(Phil (G), I printed out a few selected ~M/~~M posts, and have read
her those too. And we've been talking with her, and about her.
She's doing okay. Luce says my reading makes her less twitchy, but I
can't tell. I've downloaded all the messages that have come in since
I left, and I'll be reading those next, along with a couple more
~M-ish things like Misha's recent update.
Took me a while to figure out how to get online using the room phone,
but I've managed it. I won't check in too often, and I'm still not
sure what my plan for the night is, but I'm here.
Elizabeth, if you could send me the list of names you compiled, I can
read that to her again.
Becca, thanks for the offer of a room, but I don't think I'll be
schlepping out there tonight --- Marla's offered me a room at her
place, and I may just stay here at the hospital anyway.
I'll report in the morning, at the latest.
--Angus
I just talked to Luce in Maddy's room. Maddy continues
to be stable, and she is comfortable, though her breathing has
slowed just a little.
At the suggestion of several people, I compiled a list of
about 100 names that are subscribed to the various lists,
as well as those others who have posted comments to her
blog page.
Luce put the phone to Maddy's ear, and I read each name
to her, speaking slowly and enunciating clearly. I
stopped after each 15 or so names and assured her all
of those people love her and are sending their supportive
thoughts and prayers. Then I would read another group,
with the same assurances.
When Luce came back on the phone, she said, simply, "For the first
time, Maddy cried."
Maddy also blinked her eyes while I was talking, just as she did
yesterday.
All of us--Luce, another visitor to Maddy's room, and me--found
her reaction emotionally overwhelming. Maddy not only heard
all of our names, she comprehended what she was hearing,
and she was obviously moved by it.
This is one of the most touching things I have ever participated in.
I'll post again tomorrow, and sooner if there is any change.
Elizabeth
I just talked to Luce, who has spent the last 20 hours at
Maddy's bedside.
Maddy remains in stable, but very critical, condition. She
is being kept comfortable.
Maddy can hear, though the doctors are not sure how much, if
anything, she can comprehend. When Luce, at my request, put the phone
by Maddy's ear, I told her we all--everyone on all the lists and
all those who keep in touch through her blog page--are
thinking of her, that we love her, and that we all feel fortunate our
lives have crossed hers. Luce said her eyes fluttered while I was
talking, so we can hope she may have understood some of my words.
Luce said Maddy has told her several times over the past
months that the silver lining to her illness has been the
overwhelming outpouring of generosity, kindness and
attention we have lavished upon her. Maddy described herself
as flabbergasted by and so grateful for our efforts.
Instead of posting every day, I will wait until there is some change to
report before sending another update.
Elizabeth
Following a tip from Edward Rice, I checked with Patient Information at
the hospital. They show Maddy in a regular room, not in the ICU.
But this is not good news.
I've also just talked to Jean. By consensus, no exotic, extraordinary
measures (such aqs a shunt between her brain and abdomen) will be
performed on Maddy.
She is breathing on her own, but she is deeply unconscious. From brain
swelling twice in one week, she has permanent physical neurological
damage (her left side was impaired even before the second swelling).
The extent of damage to her cognitive functions is unknown, but some
damage is inevitable.
Luce, Hilary, Sacha, Larry, and Marla are all with her, and Jean will
return to Philadelphia tomorrow.
I'll post again whenever I receive more information.
Elizabeth
Following a tip from Edward Rice, I checked with Patient Information at
the hospital. They show Maddy in a regular room, not in the ICU.
But this is not good news.
I've also just talked to Jean. By consensus, no exotic, extraordinary
measures (such as a shunt between her brain and abdomen) will be
performed on Maddy.
She is breathing on her own, but she is deeply unconscious. From brain
swelling twice in one week, she has permanent physical neurological
damage (her left side was impaired even before the second swelling).
The extent of damage to her cognitive functions is unknown, but some
damage is inevitable.
Luce, Hilary, Sacha, Larry, and Marla are all with her, and Jean will
return to Philadelphia tomorrow.
I'll post again whenever I receive more information.
Elizabeth
Maddy did make it out of the ICU either yesterday
morning or the afternoon before, but about 4 PM
yesterday afternoon, she began having respiratory
problems badly enough to be taken back to the
ICU.
Also, she has blood pooling in her brain. She is
unconscious, completely unresponsive.
Luce is in Philadelphia.
I expect to hear from from Jean or Luce tonight,
and I'll post as soon as I do.
Our friend could use whatever supportive
thoughts and prayers you have for her.
Elizabeth
From Elizabeth:
I just talked with Jean, who reports that Maddy is doing
better and better! She's very stable, is more and more
conscious, and they will transfer her out of the ICU and
into a "normal" room as soon as they have a single room
available.
They have removed her chest port and her brain drain.
They don't normally remove the brain port--apparently
that's a complicated enough procedure that it's just
easier to leave it in permanently--but they may be
taking hers out if it proves to be a source of infection.
Maddy will probably not be able to talk on the phone for
a few days since saying even a few words exhausts her,
but Jean will continue giving me daily updates.
Also, on their way to her, are some nice warm scarves
and turbans and sleeping caps to warm and protect her
dear bald head.
Elizabeth
From Elizabeth:
Not much to report. Jean went back to Canada, so we
have no source of information at the moment, other than
no news is good news.
I just tried Patient Information at the hospital, and
Maddy is still in intensive care, as was expected. My
understanding is that they will keep her there until
the latest hole in her skull stops draining, which is
expected to take another day or two.
I'm hopeful that by the end of this week, I'll be able
to once again get updates from The Ribena Kid herself.
Elizabeth
From Elizabeth:
Maddy continues to do well, all things considered. I didn't talk
directly to her, since she's still in the ICU, but Jean brought me
up-to-date.
She is briefly conscious, off and on, and is aware and alert. She's "sipping
Ribena like crazy," and talking in small patches before drifting
off again. She can't actually eat much, maybe a spoonful or two
of yogurt, but she says she's hungry, and she asked the nurse for pizza
this morning!
There is an infection in the spinal fluid around the chemo port in her
brain, and the infectious-diseases doc wants to have that port
taken out. He's culturing the fluid to see which specific
antibiotic to use, but in the meantime, she's already getting 5
antibiotics, and one/some of them will be helping combat the
infection.
While Maddy is talking clearly and has control over the left side
of her face, she cannot move her left arm or leg. The theory is
that this is due to the repressurization of her brain, now that
the tube they inserted yesterday is still draining fluid, and that
it will be temporary. She can't receive physio-therapy in the
ICU, but she'll start getting it once they transfer her out in
1-3 days (whenever the newest brain tube stops draining).
Jean mentioned Maddy could use some nice cotton scarves since
one side of her head is now bald after being shaved to insert
the tube. I'll find some pretty ones on the Internet and have
them sent to Becca.
By the way, Maddy is becoming known affectionately as the
British-American Princess, due to all the nice sheets, towels,
foods, etc., we've sent her.
Also, the Maddy Fund is going to be covering some other items
like utilities.
Elizabeth
From Elizabeth
Maddy is doing much better!!
They bored one or more holes in her skull
to alleviate the pressure, and she improved
almost immediately. While not yet fully
conscious, she's more responsive: her eyes
are open, she can squeeze fingers on request,
and she sometimes repeats a word
someone has just said.
The drain(s) will stay in her head for
2-3 days, so she'll probably by in the
ICU for 2-3 days.
Elizabeth
I just talked to Maddy's friend Hilary. Maddy was
somewhat responsive early this morning--that is, she
could squeeze fingers, but not talk--but she is
"totally out of it now."
She is unresponsive now because of brain swelling.
There's enough swelling to twist her brain, so
they are, at this moment, transferring her to the
ICU where they will put a burrhole(s) in her skull
to relieve the pressure on her brain.
When I asked Hilary if there was anything even slightly
encouraging to report, she said in a strong and
optimistic tone, "This may well work."
Let us hope it does.
Elizabeth
From Elizabeth:
I spoke again to Maddy's friend, Jean, who is in Maddy's
room. Maddy's vital signs continue to be very stable,
which is a good sign.
Her lack of responsiveness is apparently typical for this
level of sepsis.
She will probably receive her final chemo dose tomorrow,
then her body can begin to recover from chemo and start
producing its own white cells to fight her infections.
They did not do the bronchoscopy yesterday after all,
because she was not alert enough to participate in it.
One way that we can gauge her condition is by what room
she is in. If she gets better, she will go back to
the area of the hospital where she was until late
yesterday or today. If her condition worsens, she will
go to the ICU. Jean said at one point today, the docs
were on the verge of ordering her to the ICU, but they
then decided she didn't need to go at that point after all.
I'll talk to Jean again about noon, Eastern time, tomorrow, and
I'll post an update afterwards.
Elizabeth
I just got off the phone from talking to Jean, Maddy's friend
from Canada, and Sasha, Maddy's friend who is an oncologist.
Maddy has been moved from her former room to another that is
halfway between the care she was receiving and an ICU. The ratio
of nurses to patients is higher than where she was.
Maddy is septic; she has two different bacterial infections in
her system. Her temperature is around 101 F, and she is
unresponsive enough to be considered unconscious. She may or
may not be moved to the ICU.
In addition to the anti-bacterials she was on, they are now
giving her two new anti-bacterials and a new anti-fungal med.
Sasha reports that this septic condition is frequent in
leukemia patients because their white cells are so few and
for that reason and others, their immune systems are so
compromised. She has one more chemo dose, and then this round
is finished. Left to itself, a body will start to produce
its own healthy white cells a week after chemo ends, but in
Maddy's case they can and will give her growth factor to
hasten the process.
The hope is all the anti-bacterials and anti-fungal meds
will combat the infections for her, and then her own defenses
will start to come into play and finish destroying the
bacteria and fungus.
Sasha also says her blood pressure and heart rate are
well-controlled, and even with the pneumonia, she is not
as "air-hungry" today as she has been.
Jean will be in Philadelphia until Tuesday. We are going
to talk again later today (tentatively around 5 PM,
Eastern time), and I will post an update then.
Elizabeth
From Elizabeth:
I just talked to Maddy very briefly. First time I've been able
to get through since Monday. She is weak and very breathless.
She was able to tell me only that she has finally given
permission for the bronkoscopy, which I believe is scheduled
for this afternoon. She also says she has a "bad" fever.
Her friend, Jean, arrives from Canada today. I'll post
more after I talk to her.
Elizabeth
From Elizabeth:
Again today, for the third day in a row, there has been no
answer in Maddy's room to any of my several calls. I did
check with Patient Information this morning and learned
she is still in her room, so at least she's not back in
the ICU.
I'm very concerned about her, and I'm sure she could use
our thoughts and prayers.
Elizabeth
I called several times throughout the day, but there was no
answer in Maddy's room. I will, of course, try again
tomorrow, and in the meantime, I can only hope she
is holding her own.
Elizabeth
From Elizabeth:
Didn't get to talk to Maddy directly today. When I
called in the morning, there was first no answer, then
on a subsequent try, a nurse answered and said Maddy
was already on the gurney to be taken for a test. She
suggested I try an hour later which I did to no avail.
(Even earlier I had talked to the nurses' station to see
if she needed the Embla numbing cream. This week, it
turns out that the Tuesday procedure, which the cream
helps Maddy tolerate, had been done on Monday, so she
didn't need it today. Tubes of it will arrive from
Canada tomorrow. The nurse I spoke to added his
suggestion that I call her directly later today, since
"she seems kind of low.")
About mid-afternoon, a nurse again answered and with her
help I tried to talk to Maddy, but I could only hear
her breathing.
I asked the nurse if Maddy were doing okay today, and I
was told that she's resting. When I asked if I should
call back later today or wait until tomorrow, she
suggested tomorrow.
In sum, I think it's been a hard day for Maddy.
Elizabeth
Note to Canadians: Maddy needs more Emla cream as
soon as possible. Someone has walked off with the
tube she had, and she had to have 2 ports replaced
today. I cringed as she said she "squeaked and
writhed." Would someone in Canada please get
TWO of these tubes and send them to Becca by
overnight mail, and then tell me the total so I
can reimburse you from the Maddy Fund. If you
are able to do this, please email me, and I will
send you Becca's address if you don't have it.
To add to Maddy's woes today, she's had an awful
headache all day long, and she still has a fever,
though when we spoke in early evening, her time,
it was under 100 F.
Maddy says it's fine with her to refer people who
ask about her to her blog page.
She is not able to read email. "Not right now, I
can't concentrate enough."
Elizabeth