I remember...

... when Ben borrowed our Sprinter van
about 4 years ago in Tucumán.

Then one of those torrential downpours
hit. The sort that the local boys anticipate
by filling the storm water drains with
empty plastic bottles, just so the roads
will flood and they will earn a peso or two
pushing stalled cars out of the flood.

Ben thought the Sprinter would go
through almost a metre of water. It
didn't. Water went into the engine
and this bent connecting rod was
the result. It took a number of local
boys and more than a peso to push the
car all the way home.

More thoughts about the paradox of being and not-being and time

Unlike the future, the past is so fixed. There is no changing it. It's
set in stone for good, or for ill. Yes, it can be reinterpreted,
forgotten, forgiven or misremembered. But not changed in its 'having
happenedness'.

As for the future, we mostly believe in the future; in its openness
and possibilities. We believe, perhaps naively, that we can forge our
future. And for those of us who do believe that, then the future is
mostly not a threat. For Christians too the future holds hope and
confidence.

The past also has an ambiguous presence in the here and now. It is
presence because all that we are today is rooted in the past. Without
our past we are nothing now. So the past is overwhelmingly present
today. But at the same time the past is so thoroughly past and passed:
in a second it is gone and I cannot change it, go back to it, erase
it. And I cannot hold onto it, which of course is what we want to do
with Ben. Just to touch him again and to hear his voice. To have him
alive in the present and not have him as a past presence.

Yes we walk by faith. But we admit that our eternal hope of reuniting
with Ben is of a different order and only understood dimly from this
side of the veil. And right now - to confuse a metaphor - we'd rather
have the devil we knew in his tangible earthly body. We don't want him
as only past and future, we want him present too. Is that
faithlessness? I hope not. Just human anguish speaking out.

In the present he is not here. He is so gone. Untouchable. Yet so
present in all that we are and think and do. I still get confused
about how many people should be around the table when we are "all" at
home. This must be part of the offense of death - the paradox of the
presence/absence of the dead one. The unfathomable paradox that makes
us wrinkle our faces in pained perplexity and cry out "No, it can't
be!"

Chris

PS If you are a student of Heidegger or Augustine or Gadamer or just
the school of hard knocks, and you take offense at my theology or
philosophy, feel free to comment on these rambling thoughts as I try
and make sense of this part of the journey. Of course the blog owner
reserves the right to only publish comments that seem useful and
edifying!

From my reading today: Gadamer says, "That a proposition is more than
the representation of a given objective content means, above all, that
it belongs to the whole of a historical existence and that it is
contemporaneous with everything that makes its presence felt in it."

If that sounds complicated, try reading it slowly in the light of any
proposition that matters (like, "Ben died four months ago." or "God so
loved the world...") and you feel the weight of history and personal
experience coming into the present to fill out the enormous meaning of
propositions such as those.

Excuse me God

Excuse me God?

Oh hi. It's Lindy here.

I'm sorry to interrupt you but I was wondering...

It's a bit awkward...

The thing is, um... I think there's been a mistake.

I know it's a bit rude of me but I thought well, maybe you were a bit busy
half way through last year and you got Ben mixed up with someone else.

No. Of course that doesn't mean I think someone else instead of Ben should
have gone through it.

I've been thinking about it a lot and I really think that there was a
blooper somewhere.

An administrative error perhaps? New PA or something?

I'm running out of credit so I'm going to have to call back but would you
have a spare second or two to look up your records and see whether there was
a mistake and that Ben is after all supposed to live to be a father and
grandfather?

I know that you are ok at reversing things so I thought it was worth asking
you on the off chance that there has been a giant mistake, and you hadn't
realised it, but you'd fix it up straight away now that you knew.

Please please please don't forget to check for me :-)

When better is worse and worse is better

It's over four months now since Ben died and less than ten months
since he was first diagnosed.

I'm a bit confused really. My problem is that when I feel a bit
better about Ben's death I feel worse and when I feel worse I feel
better. Mmm... sounds like I am confused doesn't it? But perhaps it
all makes sense. I think it goes like this:

As time goes by, my experience (and I only speak for myself) is that
my moments of anguish and tears are getting more spaced out. So on
that score, I'm feeling a bit better. But as I reflect on that, I feel
the pain of letting go of Ben and not feeling the intenisity of pain
that losing him deserves. If I don't feel that intensity then it seems
he's further away and I am not valuing the relationship as I should.
And for that, I feel worse. So when I feel better I also feel worse.

And when I feel worse I feel better because the most painful moments
are also the moments of feeling closest to Ben: remembering his voice
and life together and moments in hospital, particularly the last few
days.

So grief has its stages and ambiguities doesn't it? And for the
counsellors amongst this blog's readers: don't worry, I'm not racked
with guilt for not feeling worse... but thank you for caring!

May this Easter be a time of thinking about resurrection and the One
in whom Ben trusted for his own resurrection.

Chris

A long time between posts

Dear Friends,

It's been a long time between blog posts hasn't it? Two weeks in fact.

Actually, I put up a photo a a few days ago but took it down a few
hours later because it caused too much heartache.

I guess the lack of blogs reflects the fact that not much has changed.
While Ben's absence is constantly with us and there are still things
to say, it seems that most of what we might say has already been
said in the blogs below.

Someone asked me recently if I had days where I didn't think about Ben
or feel the pain. I said, "No... hours perhaps, but not days." And I
think for Lindy it's minutes maybe but not hours.

Someone else who has lost three babies talked of a 'new normal'. It's
not that you go back to normal, she said, but that you adjust what you
expect normal to be. That seems to make sense for me at present:
normal at the moment (and "for as long as it takes"), is like living
with a weight on my shoulders and an unseen but constant shadowy
companion that dampens my spirits and makes me more prone to
frustration and grumping at Lindy and the boys.

So now I go back to my study and think of Hans-Georg Gadamer's
descriptions of the 'finiteness' of human existence. And I'm reminded
of St Paul's words at the end of his chapter on love in his first
letter to the Corinthians: Now we see things only indistinctly like a
blurred image in a mirror. Now what I know is incomplete. But one day
I will know fully, even as I have been fully known by God. Right now
three things remain sure: faith, hope, and love, and the greatest of
these is love.

Thank you for listening!

Chris

From Lindy

Ben is always in our thoughts and our dreams and we often find
ourselves saying 'I remember that Ben…'

At the same time we are thinking and dreaming and talking about our
four healthy (thank God) boys. We hope and pray that they don't feel
second class because they didn't die. :-( That would be awful wouldn't
it?

Sometimes it seems so long ago that I knew Ben. Sometimes I look at
his stuff and I wonder if he was ever 3D. At the same time missing
him intensely is something we all live with in our different ways.

I have a friend who has been through something similar and she
writes me letters and always signs them off with 'Keep looking after
each other'. So far so good. It would be too easy to let a chasm form
as we try and process our pain in different ways.

'Shameless marketing' blog removed...

This blog has been removed for fear that it might have been misunderstood... always a danger if you don't know Chris's quirky sense of humor.

Meanwhile we wrestle daily with the paradoxical conjunction of Ben's constant presence in our thoughts and his such final absence from our lives.

Our sincere thanks to so many people for walking this road with us.

3 months... From Tim

Three months, three weeks, three days, three hours; much difference?

Three months after purchasing an item of technology, its price is
severely devalued. The same can't be said about grief. There isn't an
equation for grief; it's not as mathematical as some would like it to
be. Grief isn't necessarily inversely proportional to time past.

For me, Ben's death is similar to what I imagine an amputation might
be like. An amputation involves losing a part of yourself. After this,
one has to re-adjust to life without what has been lost. This is the
stage where things are at now. Even though people are independent
beings, strong friends form part of who you are and for this reason
losing someone is like losing a part of who you are. Once this has
happened, you have to make adjustments in order to be able to cope
without what has been lost.

I've heard that when people undergo an amputation they will sometimes
forget that they have lost a limb and will perform actions as if it
was there, such as taking a corner wider than necessary to avoid
hitting the non-existent limb on the wall. In the same way, I find
myself forgetting that Ben is no longer around and when I see
something that would have interested him I go to pull out my phone to
message him and then I get that helpless feeling when I remember that
there's no way to communicate this with him anymore…

Time

Time heals they say.
But time is also a river that sweeps us inexorably on,
Away from the past, from Ben.

We tumble through the rapids, bruised and battered,

Gasping at times for breath.
Longing for peaceful water left behind.
Can't we pause for a moment, or better, go back?
To savor the past and not to forget.

For as long as it takes

"For as long as it takes" is the title of an excellent article on grief and the myth of closure. It can be found here in last Sunday's Age.

The article talks of the "aftershocks" as a new wave of grief is triggered by memories or reminders. For me the aftershock comes with a start - a bewildered lostness and a physical knot inside - when I see photos or think of Ben and then suddenly realize that he is really gone. And gone so far away. I would walk 500 miles just to see your smile again. So I cry, and then do the next thing that has to be done. For as long as it takes.

One Weekend-from Keith, written after the funeral

I listened to two fathers speak of their adult children this weekend.
One not used to speaking in public, we laughed and interjected.
One a leader of men, we cried, silent.

A daughter's wedding.
A son's funeral.
Same age.
One right.
One seemingly wrong.
All with faith.

Both with reflections of birth, childhood and teenage years
space of their loved first born.
Pride in their adult child, choices made, successes achieved.
Words, attitudes and body language all communicating in volumes.
Unconditional love.

One with absolute delight walked his daughter up the aisle, watched as she
space left in the safe arms of her new husband. Life unfolding.

One with uncontrollable grief walked down the aisle behind the coffin of his
space son, watched as he was carried on the shoulders of six strong
space head shaven mates. Life closing in.

I know which father I would rather be. Yet God the father lives with the
space experience of the second father, not of the first.
A glimmer for the weeks.

Thanks - from Lindy

Some people asked me to expand on what we are grateful for. So here it is...

There are so many things about Ben's life that I am grateful for. I thought that I would limit this blog to the last six months and that horrible 'C' word. It is amazing that in such a traumatic time there were very many things to be thankful about along with treasured memories noone can take away.

We are thankful for;
>>> His gentle death which he had talked about. Just before he was intubated for the second time (the day before he died) we did a hypothetical 'just in case' scenario while not really believing that this would be our last goodbye. Chris took photos of messages Ben sent to a few people via hand gestures J. He told us then that to 'go' from an induced coma would be good because he knew about the coma state and that he would be peacefully unconscious and simply not wake up. He said to die that way would be the best. Less than 24 hours later his dying happened just like that. He never woke up.
>>> We were with him as he died and were given time and privacy during and after his death.
>>> He died being spared many more months of terrible health to then die anyway. As we lived a 'normal' summer holiday period, many times I would thank God that Ben hadn't had to survive disappointment after disappointment as he struggled to survive and couldn't do the things he enjoyed most like sun, sand and surf, good friends, lots of laughter, all done with high spirits and high energy levels.
>>> He missed out on the health complications involved in preparations for the Bone Marrow Transplant and then the inevitable and life-threatening side effects once it was done. He missed out on experiencing getting left behind as life kept moving people forward but not him as he remained debilitated and frustrated in hospital. He was unable to even stand after two weeks in ICU. He was weak and we were thankful that he didn't remain in that state any longer.
>>> He said he wanted to go home and was 'over' hospital. It was less than 24 hours when he moved on to his true and permanent home.
>>> Despite feeling pretty lousy he went to the Uni. Church weekend camp and was able to drum in the music team. Drumming had been an important part of his life for many years. It was the last time he drummed as far as I know.
>>> Pete Newmarch's 21st. That weekend was like a special opportunity that Ben was given. He had a 36 hour period of time when he could come home, sit on the driveway in the sun with Sallie and that night go to Pete's birthday. He checked with Pete prior to going to make sure he wouldn't be up-staging him. Pete had no hesitation. So Ben was able to be with lots of his friends after one month of being in hospital and seeing very few people. As it turned out that night was the last time he saw most of his friends.
>>> He was able to farewell his cousins and extended families with special and individual times with them.
>>> The existence of mobile phones and SMS. Ben was often too weak or in too much discomfort to speak on the phone but he would often respond to an SMS from friends or family. It kept him in the loop and kept us in touch with his reality.
>>> Ben went severely down hill at a time of year when Tim could spend hours at the hospital with him. It was a time for Tim to remember and treasure as he was able to be a significant support and affirmation for Ben in his last days.
>>> As Ben's health deteriorated hospital became the place he wanted to be. Once again we thank God for Box Hill. We visited the Alfred Hospital's ICU soon after Ben had gone and were overwhelmed at the size of it and the apparent lack of personal involvement of staff with their patient. Everyone knew Ben and knew us and that involvement was a great comfort to him and to us.
>>> He trusted the Doctors who cared for him in his short illness. He had respect for his specialist and was confident to follow his suggestions. The hospital registrar he thought was 'perfect'. She spent many long moments explaining technical things to Ben at different stages of his illness.
>>> He was treated with dignity and respect by all the staff at Box Hill. Plates of hot chips and Big M chocolate milk and access to the 'unoficial menu' were small joys that kept him going.
>>> So many friends who stood by him. We arrived at the church for Ben's funeral 2 hours early at about 12 midday and the church was buzzing with loads of Ben's friends who were preparing everything for the service.
>>> The funeral itself was a tribute to his life and faith and his manner of dying. The crowds of people were a comfort and encouragement.
>>> His trust in God. He firmly believed that God had his life under His control and was therefore uncomplaining and peaceful even as he grew sicker and the disease took over his body.
>>> The prayer of his heart was to be useful and for his life to have had a positive and powerful impact on others' lives and beliefs. It is an ongoing encouragement to hear and read of many lives challenged and changed for good.
>>> Wonderful times of both laughter and pain in the last six months. Moments that could only happen because of the increasing threat of the lymphoma.
>>> He watched a last video in ICU with Matt a few days before he died and a different one with Tim, Andy and Pete; all of them squashed up in front of a small TV monitor in Ben's small ICU cubicle.

This is a beginning but honestly, there are heaps more things to be thankful for. We don't grieve with the blackness of broken relationships or unresolved issues between us. Our grief is painful and wistful but with no regrets. For these things we are mega thankful :-)

The horizon: bushfires around Melbourne

Last night I took some photos of the northeast horizon from Doncaster. The best photo is on the ABC website here. Others can be seen here. I could tie the photos in with Ben... or I could just say this blog post is off the topic! For those readers not in Melbourne, yesterday was 46.4 Celsius and we are experiencing some of the worst bushfires in history. Tragically, many people have died and hundreds have lost homes. (If you wish to use one of these photos please contact me first.)

Getting over it?

A friend who we haven't seen for many years writes:

Chris and Lindy,

I find that I am still thinking about Ben and reflecting on your loss. My girls have received an increased number of hugs over the past weeks - hot weather permitting. I found that checking the blog every now and then I was enriched by the love and compassion expressed by so many people. Reading Tim's comment that it felt surreal and Lindy's struggle to imagine how time can heal I had a thought I would like to share with you.

My grandmother lost her first husband to appendicitis when she was only 25. She had two small boys and was pregnant with a little girl who died soon after she was born. My grandmother remarried a few years later (to my grandfather) and had 3 more children. She played golf, tennis, croquet & lawn bowls, was an early feminist, loved the opera & ballet and was a wicked solo player. She had an enormous zest for life, and a large circle of friends (most of whom were 20 years younger than she was). When I was in my 20's and she was in her late 90's I would visit her most weekends, in her last years she started reminiscing more and would talk about the wonderful times she had. One day she was talking about how she met her first husband at 16, how her parents didn't approve and she had to sneak out to see him (difficult when you are 15 miles apart) and then how difficult it was managing the farm after he died. Thinking how full her life had been I tactlessly remarked that she had "obviously gotten over him", but she replied "oh no my dear, I've never gotten over him". I could hear the grief in her voice and I realised that even after 70 years her love for him was strong and her memory of him had not faded.

So, never fear that you will lose your connection to Ben, he will be in your hearts always.

With love,
Sue.

Thanks Sue!

Today's mail

HGG

The ideas of Hans Georg Gadamer are not easy to understand. But it's a task I have set myself for my doctorate. I've already made use of him anonymously in the blog on historical consciousness (click to reread it). But this morning I read the following and it rang true as I think of the 'experience' of losing Ben. Gadamer says:

"Real experience is that whereby man becomes aware of his finiteness. In it are discovered the limits of the power and the self knowledge of his planning reason. The idea that everything can be reversed, that there is always time for everything and that everything somehow returns, proves to be illusory. To acknowledge [this]...is to have the insight that all the expectation and planning of finite beings is finite and limited."

It's so easy to live as if life is full of endless possibilities and as if our planning and reason will find solutions to all problems. Life does have wonderful  times and possibilities. But if we don't also learn how finite and fragile our lives are then we are bound to be disappointed. It seems to me that experiences like Ben's death can teach us these things so that we are more careful about what we value and about how we will spend the time that is given to us on this earth. 1 Peter 1:24-25 comes to mind.

Sorry for the sermon!
Chris

A hole in the ground

I caught the Royal Parade tram to uni this morning. The crane is up now, towering over the hole in the ground. The hole that Ben watched them dig on his way to and fro as he studied. He knew the excavators by name and had a favorite. This is the hole that he marveled at as he considered being part of its future: a world class neuroscience facility on the cutting edge of knowledge.
(Thanks to Stu for the photo taken for Ben when he was in hospital so he could keep up with progress. Stu and Ben used to chat by the hole.)

Life goes on

Life goes on. People move on. Life moves people on.

We too move on. Pete and Matt go back to school tomorrow. It's the start of a
new year with different teachers, different classes and for Pete the
beginning of Year 11 and VCE. Tim starts Medicine (yippeee) tomorrow.

And Ben is not here and won't ever be part of these significant changes.

A new surge of grief hits as we come to terms with 'the future' (tomorrow)
as a place where Ben has never been and will never be. Relentlessly and
unforgivingly time and the machine called life leave him further and further
behind. While this is 'time heals' for many, for us 'time' probably means
more like years rather than weeks. We don't want to move on and lose the
remaining and tenuous threads of contact with him.

We still give thanks though. Thanks for the gentle death he had. Thanks for
the suffering he was spared. Thanks for his full and fantastic life. The
list could go on. If you want a fuller list let me know and I will post one.

Hope 2009 is good for you.

Lindy

A Transition - a grandfather's perspective

The loss associated with Ben's passing is still acute, but I find my mind is going through a period of transition, from where grief was a burden, to a place where I am viewing his life as an inspiration.

I would never have imagined that a grandson could become a role model for a grandfather, but the courage shown by Ben is causing that process to evolve. Not just the courage he displayed during those last awful months, but the vitality and the way in which he dealt with the challenges of his life. For me of advancing years, the strength of character displayed by a grandson is a source of inspiration for those challenges that might lie ahead.

Memories of Ben's energy were with me this week as I viewed the wreckage from a severe storm. A garden strewn with trees and branches, fences down under fallen trees means much hard work ahead. My thoughts went to Ben who would have seen the exercise as a challenge, and I imagined that I heard him say, "just get on with it Gumpa!"

As time has elapsed since his passing I am beginning to see Ben in the image of Jimminy Cricket, not just on my shoulder but on the shoulders of family and the many seeking strength in adversity. That image brings me a sense of comfort as his courage and energetic personality will continue to be with me, whereas if I allow my grief to be a burden, then I risk setting him in history.

The moral of this story is that,"you are never to old to learn", and that grandsons can become role models for grandfathers.

Ralph, ( aka.Gumpa).

The Autopsy Report

"Autopsy results? Gosh, what do you want to read those for? Won't it be just like reliving those last couple of months?"

Well in one way, yes. The pain of the finality hits as the truth of Ben’s disease screams out at us from the autopsy. On the other hand we can be at peace, knowing that our death-bed decision to turn off Ben's medication and let him move on was the correct one. The report reads: "Following discussion with the family, treatment was withdrawn on 8/12 due to poor prognosis and lack of response and the patient passed away."

Saturday 6th: Ben's day out in his bed where he woke up in the sun and the breeze. "This is perfect" he said.

Sunday 7th: A shower in the morning but Ben's body was deteriorating so the doctors recommended putting him into a coma on a respirator again. He agreed.

Monday 8th: At 3am Chris went to the hospital as Ben wasn't doing well. About 9am the doctors told us that his condition was worsening and it looked like we might have to let him go. "I've got some pretty sick patients in here but Ben is by far the worst. I'm so sorry, this is such a shame. We can make some small adjustments but there is very little we can do."

By lunchtime the respirator was up to 100% oxygen but Ben's blood oxygen levels were still dropping. His temperature was high and he had ice packed around him. His body was only holding on due to the respirator, the oxygen, the blood pressure drugs, and the constant infusions of other drugs and blood products. "Numerous systems are in failure. He will soon start to develop small clots in his limbs, which will lead to necrosis in his hands and feet. His digestive system isn't processing any food. Despite glucose infusions his glucose levels are dangerously low." Earlier they had dropped to zero where the brain cannot function for much more than a minute without damage.

We consulted with various doctors and made the decision. Then we waited for Matt to arrive from school and said our goodbyes. The oxygen level was turned down to normal (21%) and the blood pressure drugs were withdrawn.

It was a terrible time watching his vital signs slip downhill so immediately. In less than fifteen minutes his heart stopped.

In a covering letter, Ben's specialist said he had no doubt that the rapidly progressing lymphoma was the cause of his death. The specialist said that from all the clinical signs and the findings of the post-mortem we could be confident that Ben could not have recovered due to the underlying lymphoma.

For those who are interested, we’ve copied a few details:

Cardiovascular system: nothing remarkable and the heart was a normal weight. Combined kidney weight was 500g, normal is 230-440. Left lung was 1109g (325-480 is normal) and right lung was 1168g (360-570 is normal). Liver weighed 3000g (normal is 1500-1800.)

The conclusion of the report refers to "a 23 year old male with NK/T cell lymphoma who died with neutropenic sepsis [an overwhelming infection that in Ben's case involved multiple organ failure, along with a low level of neutrophils - a type of white blood cell that fights infection] following a lack of response to chemotherapy. Lymphoma was found extensively in the bone marrow, lymph nodes and liver. The cause of death is diffuse alveolar damage in the setting of disseminated lymphoma."

Lindy

500 miles

Driving away from another place where you used to be. Another reminder
of your absence in a familiar place where you once felt at home. And
the people ask how we are going. I say: Fine. As expected. How can we
be?

We carry on without you, every day another step away-one more
day away from the you we knew.

Your music plays as I drive. "I would walk 500 miles" takes me back to
Tucumán, home schooling, jury-rigged physics experiments and "I hate
maths" (but you won that one) and cats on your desk as you studied and
"500 miles" blaring from your speakers.

I would walk 500 miles and I would walk 500 more just to see your smile again.

Six weeks

Six weeks ago today that last we saw your face.
Six weeks of Benless days and restless nights.
Six weeks of absence while you lurk in every room
space and every corner of our minds.
More present than ever, yet gone so far away.
---
We want to see him, hear him, hold him,
space but all we have is pictures on the wall and
space memories of smells and smiles and sounds of a voice,
space all growing dim.
Weeks to be grieved, to be touched by all we cannot touch again,
space the laugh and crooked smile, the humour and frustrations,
space the joy and bitter sweet of life with Ben.
Six weeks: time enough for some - “When Ben first died” they say,
space as if it’s past already - time for many to move on
space but not yet time enough for us.
space Not time to begin to understand. Let alone forget.
Six weeks to ponder, to think of life and death and heaven
space and how he’s resting now.
space Of whether he’s asleep or watching as we fret.
Weeks to remember. To remember a life fulfilled and overflowing,
space that cannot be robbed or lost again. No random tale told by an idiot
space but a life well lived… full of sound, some fury, and endless possibilities.
Yet every day that passes we leave him far behind:
space six weeks into the past and counting, adding up the hours
space since last we saw his frown and cheeky grin and brave goodbye.
---
Six weeks ago today we made your decision and watched as you faded away.
space Promoted to glory: “we will meet you in the morning
space when all sorrow has drifted away.”

Closing the CT chapter

Faithful followers of this blog have been waiting for this news with hunger pains for months. Now, finally, here it is: Ben's favorite recipe you've all been waiting for. Thanks Mama.


Chicken Townhouse

Ingredients:
1 oz. (25g) butter - - - - - - - - - - - 1- 420g can Cream Mushroom soup
½ cup diced capsicum - - - - - - - ½ cup whipped salad dressing
½ cup finely chopped onion - - - 100g noodles
½ cup frozen peas - - - - - - - - - - 2 cups chopped cooked chicken
Add other vegetables if desired!

Topping:
1 cup small bread cubes - - - - - - - 25g melted butter

Instructions:
Boil noodles in the usual way until tender, drain.
Melt butter, add capsicum and onion and cook until tender.
Add mushroom soup and salad dressing, stir together well.
Add noodles and chicken, mix lightly.
Season to taste with salt and pepper. Transfer to oven proof dish. Place topping around dish.
Bake in moderate oven for 30 minutes, or till bread cubes are browned.

The story behind the photo

The photo below is from Von. She says: This photo was post a
dolphin-searching-swim at Secret Beach in Mallacoota in 2006. Ben was
mulling over whether it had been the right thing to do, to lead
people, including some not-so-strong swimmers, out into the open ocean
to check out a few dorsal fins we spotted from the shore. It was a
really relaxing team day off, and I think the decision in the end, was
that it had been okay, in fact a 'once in a lifetime' experience to
see the school of dolphins so close. But besides the background story,
I was drawn to this picture by what it represents to me: Ben is
standing alone, out of reach. A leader; the first in our group to have
left this place for good. I hate it and love it. He's not looking at
us and he's not completely settled with where he's at yet, either. I
want to yell out at the Ben in the photo but am frustrated knowing he
won't hear. (Click the photo to enlarge it.)

Ben loved the beach

More tears!

As many of you know Ben and Tim have walked side by side for years. Ben would have graduated when Tim did three weeks ago, and both had applied to study medicine this year.

After all the study as well as the turmoil of 2008, last Monday Tim heard that he had been accepted into Medicine at Deakin University.

That too brings tears to our eyes.

Gone for good... from Chris

The deep aching pain rises up again as I realize he is gone for good. Like nausea rising from the stomach, it's a physical sensation that ends in tears and "Oh Ben... How can you be gone?" And I write it here because it helps me to share it with others who knew him and loved him.

Mallacoota memories

Today we leave for a few days at Mallacoota where Tim is a director of the Theos youth outreach. Last year Ben directed the team of 25 or so, and we were camp parents and cooks. It holds fond memories of Ben in his element: leadership, the beach and outdoors, young Christians mixing with totally 'unchurched' youth. Who could have known a year ago that Ben would not be back this summer?

Thoughts - from Lindy

It doesn't seem like the time to finish this blog. But perhaps that's because I'm still holding my breath and waiting for Ben to come back? Maybe it is time to finish after all?
Chris and I talked about the possibility of going back to the end of June and writing about the beginning; that growing lump on Ben's leg. How unbelievable that a lump which at first looked innocent enough could be so aggressive a cancer. It's been a huge six months. Would it be interesting to go back to the start?

In six months Ben was catapulted through radiotherapy and chemotherapy, biopsies on just about everything, PET scans, CT scans, countless x-rays and ultrasounds not to mention blood tests in the hundreds and major surgery. The nurses in ICU said they had never known the Blood Bank to issue so many units of platelets in one hit to one patient. You name it and Ben had it administered or tested or taken. Finally, in the last 12 hours when intravenous drugs weren't touching his high temperatures, he was packed in ice.

Would Ben have changed anything? Maybe. Maybe not. He surely would have wanted to change things in his character that he didn't admire. Would he change his last six months if he had known his cancer was terminal? I don't know that he would. He made every effort to say goodbye. The weekend when he was well enough to come home from hospital and went to Pete's 21st was an amazing opportunity to connect for the last time with so many friends who have stood by him through it all. Despite the whole cancer thing being frighteningly confronting when it appears in a young fit person, not one of his friends walked away from him or the situation. Thanks guys!

Two months and 40,000 visits later

No that's not hospital visits, although there were lots of them in the last two months! It's now two months exactly since this blog started and this afternoon, somewhere in the world, someone opened the page for the 40,000th time... an interesting piece of trivia for those who like numbers.

Happy New Year!

Presence, absence and historical consciousness

In Ben's absence his presence is even more strongly felt. His absence makes us acutely aware of how present he was and still is in our ways of relating and thinking. We are aware of 'what Ben would have said' or 'how Ben would have responded'. We miss Ben's caustic but not unkind sense of humour. We see Ben's bike and clothes and bedroom that will become someone else's. We see Ben's phone but Ben's characteristic way of holding and using it is absent.

And in his absence we realize how much a part of us Ben was and will always be. "No man is an island... any man's death dimishes me" said John Donne. Ben cannot simply disappear: his absence leaves a Ben shaped hole. But more than that: if in time we forget or cover over that hole, then we would be naive, because for those who have known Ben well, who we are oursleves is partly due to Ben himself. Ben has been part of our own formation and that cannot ever be undone. We are forever, people who have known Ben, people who have been changed by Ben - by his life and now by his death.

The hope of heaven - by Lindy

We so hope you all enjoyed the special day that is Christmas day. We
hope that any wrinkles and glitches that often occur between family
members were amazingly absent. 'Christmas is about family' is a pretty
common belief amongst so many cultures and people in the world. Even
disparate or hostile families try and unite on Christmas day. With
varying degrees of success I imagine!

This year for us then has a very strong and painful sense of 'someone
missing'. Ben seems to be just out of sight. As the days go by he
moves further out of sight. New things are happening that he doesn't
know about and will never be part of. Strange things trigger the
feelings of losing him to the past. Things like new petrol stations on
the Hume Freeway as we drive to Rutherglen or Wodonga. They are part
of the future that he has left. Tim has glasses. Ben never knew him
with glasses.

But Christmas isn't only about families. For Christians, it's about
the most important birth ever. It is about celebrating that life (and
death) that gives us eternal hope. During times of sorrow and sadness
it is about being reminded that life isn't just about this stuff of
today which is sometimes hard and sometimes cruel.

The hope of heaven as we experienced in Argentina, is much more common
amongst people who have not been overly materially, emotionally or
physically blessed in this life. In affluent countries we often treat
it too lightly; we have everything we need here. Heaven can seem
irrelevant. 'Pie in the sky when you die' is a derogatory phrase. Heaven
is not seen as a legitimate part of our faith. It seems to be evidence
that the truth of our faith is invalid. People seem to think that if
Christianity is really true then it shouldn't need the hope of heaven
to convince people.

It was the belief in heaven and an unbelievably wonderful eternity
with no more death - and the Lord wiping away every tear from our eyes -
that was Ben's sure and firm foundation. Thank God for that. If the
whole thing sounds a bit lame at an intellectual level - frankly
ridiculous even - and the Christians you know are quite mad and turn you
off, then please have another try. Have another look. Ben was no fool
and no nerd. For the sake of his memory if nothing else, at least have
one more look.

May God bless you all.

With our love.

I remember...

Sometime soon this blog will fade away. One of the fears after losing
someone is that the memories will fade too. It's been great to hear
and read of people's memories of Ben so I wonder if we could ask you a
favor? Will you add some memories to the comments page on this blog?
They don't have to be lengthy; perhaps just a simple sentence "I
remember when..." If you can't add comments send them to me at
BensGotCancer@gmail.com and I will post them for you.

I remember how Ben was always a climber. He climbed a step ladder
before he could walk.

Chris

From Lindy

Hi faithful blog readers,

Well, you have ridden the roller coaster with Ben through these last
six months. We are thankful for your support and dedication.

When Ben was four or something similar, and Tim was over two, we went
to have lunch with some people we hardly knew who had no children. We
had a vigorous and challenging lunch time as we tried to navigate both
boys through suitable table manners for the lowish tolerance level of
'two income no kids' types. As soon as Ben had finished eating he was
off and away, charging all over the house. The husband said to me as
he watched our little human canonball 'Ben will break arms…but that
one, Tim, he will break hearts.' Ben hasn't broken anyone's arm as far
as I know but he sure has broken plenty of hearts during this time.
But what we feel is not the hopelessness and despair of a broken
heart. It is a great sorrow infused with unquenchable hope. Every day
despite the sorrow and the missing him I find it so easy to be
sincerely grateful for so many things about the way he lived and the
way he died.

My prayer is still 'may none of it have been in vain.'

It's a cliché to say that life goes on. But now I am living it and am
so glad it's true because that's how we keep going. On the day of
Ben's funeral there was a baby boy born to people Ben knew
well and a day earlier another baby was born, also to acquaintances of
Ben. Today we went to a wedding full of Ben's friends rejoicing and
celebrating together. Ben would have been there and had already sent
his 'apologies' to Jess and Lachy a few weeks ago, knowing that he
wouldn't be there. It is lovely being able to enjoy the continuing
celebration of life even when we don't feel we are able to actively
participate yet.

The brothers are travelling well and as people who have travelled
similar paths keep reminding us, we are looking after each other and
regard it as the most important thing we have to do today and
tomorrow.

I hope you have a blessed Christmas.

The thing

You turn this thing over in your mind. This happening. You look at it
from one side and the other. And you think, this cannot be. It's just
too impossible a thing to happen. He is all around us. His bedroom
downstairs with his clothes on the hangers, waiting till he comes
home. His wallet by his bed with his student card and train ticket and
library cards. The house is full of his presence but he isn't here.
Surely he's in hospital, just down the road? But he isn't and it seems
so unbelievable. And whether consciously or just looming out of sight,
the thing is always there, a weight, an ominous shadow, a dull ache,
sometimes drawing tears and at other times a glazed look or frown of
disbelief from deep inside.

Home again

We're home again but it's not much fun, with all the reminders of Ben
around us. If you are interested, the funeral service is online and
includes the moving prayers by Michael and Penny. Also online is the
sermon and the eulogies by Tim and Chris.

What a day! Now it's time to rest.

By all accounts I think we sent Ben off well yesterday. Many people
said he would have approved. The music was fantastic, everyone who
helped in many ways did a great job, the weather was perfect (overcast
but dry and just enough wind to blow the flower petals around when the
coffin left the church), and I was dressed in a half decent suit and
polished shoes. If you weren't there and don't understand the
reference to my clothes you'll have to read my eulogy. Links to the
program including eulogies will be posted on the blog in a few days.

And now it is time to rest. We are heading off to Pt Lonsdale until
Friday. So the blog will be silent until the weekend. Feel free to
send your comments but they will probably not appear for a few days.
We look forward to more blogging so don't go away!

Finally: if anyone took any photos yesterday at the funeral we would
love a copy. Thanks.

14th December 2008 – Worshiping the Lord Jesus Christ and thanking God for Ben Mulherin’s life

Coldish day – St Jude's Carlton, Melbourne – 650 people filling St
Jude's church to standing only and then into the hall – tears as
people arrived and walked past the beautiful brown and silver casket
in the hearse outside the north entrance - Lindy and Chris welcoming
Ben's loving family and friends – 6 friends waiting to carry his body
to the front of the church - the sun broke out, silver trimmings on
the casket shone as they moved Ben's body into the church – silence as
the casket was carried along the left aisle - tears and tissues and a
beautiful portrait of Ben projected onto the screen for all to see –
another placed on his casket by Lindy and Chris - magnificent modern
songs of worship sung at full voice with a tight band – spoken and
demonstrated signs of love by family, friends, clergy – more
magnificent praises to our Lord – Amazing Grace almost lifting the
roof – white petals thrown into the air over the casket as a "bald"
six carried him along the right aisle – faces with tears and smiles
and singing voices – loud really loud – casket into the gold hearse
and respectfully slowly driven away – lots of food – Ben you missed
out on the tucker :-) ☺ – white cards to write memories of Ben – envelopes
for bone marrow research - happy voices and animated chatter
throughout the afternoon tea – sun shining as we left – we mourned,
worshipped, remembered and thanked.
By Jill and Colin

Ben's Funeral

Please join us this afternoon to celebrate Ben's life and to mourn his death:

Sunday December 14, 2pm
St Jude's Anglican Church Carlton
Cnr Palmerston and Lygon Streets

There will be a cup of tea or coffee after the service.

This evening from 7pm, anyone who would like to share with us at home
is welcome. Bring some meat for the barbecue and something to drink.
We will share some stories and some photos of our time with Ben. If
you don't know where we live, ask us by email:
BensGotCancer@gmail.com.

Surreal - from Tim

Surreal…

Not “surreal but nice” like in Notting Hill, just surreal…

Words do not do it justice and emotions are hard to understand, if there are any at all.

Phrases like “it’s going to be ok” or “you will get through this” are said with good intentions but how can we expect to be able to just put something behind us that has taken 23 years to build, in a few days, weeks, months or even years? I don’t think it would be honouring Ben’s life if we just try to move into a new chapter straight away without writing a well thought out conclusion for this one.

The question is how to do that and how long will it take. There is no formula and it will be different for each individual.

I know for myself that how I’m feeling at the moment is only the tip of the iceberg. Even though I know I’m not dreaming, it still feels like Ben’s just going to be away for a while. But the thought of never seeing him again is one too hard to imagine.

Thanks for the support and prayers and for taking this tough journey with us.

An empty place at the table

Tonight we sat down to our first family dinner this week. We politely told others that we would just be family tonight: it was time to regroup. And there were only six of us.

Ben at Tallandowring - the Grandparent perspective

Ben was a grandson too. Ralph and Wilga Clarke have written some reflections on their oldest grandson. Because of its length it's attached as the first comment on this blog. Below are Ben, Tim and Andy at the farm... guess who's in charge.

Quiet thanks - from Chris

As each email or comment arrives and I know we can't reply this week ... I say quietly under my breath and often with a tear: Thanks Catherine or David or Enrique or Jimena or Marina or Stephen or VT or Adele or ...

Thanks.

The road not chosen - by LA

This is a road we never would have chosen. So when people ask how are we coping we just say: well we didn't get a choice. It is such an awfully awful situation that it doesn't seem 'real' at least half the time. When the truth suddenly confronts us we weep and wail and wonder how we will keep going in a situation like this. But we will keep going and we hope we will be able to be more loving and more kind because of the suffering.

This week has been a blur and flurry of organising and liaising with professionals involved in the funeral. Chris in black humour mode today, stood in a formal wear hire place and said how difficult it was to have a darling son die on a Monday and have to try on clothes on the Friday. As he grumbled and smiled at the same time we remembered Ben and how appropriate and good quality clothing mattered to him. He would not have been impressed if Chris dressed in a poor fitting op. shop suit with the trouser legs too short: he would approve of the hired black and well fitting suit.

All the emails and SMS's, cards, meals and flowers are keeping us feeling surrounded by people's care and concern. It helps a lot. Thankyou.

Memories

Blogotherapy - from Chris

It was Ben's idea this blog. If you don't remember you'll have to go down the page and find the first blog posting less than 6 weeks ago. It's a very public way of charting the journey that finishes where we feared and expected it would. But how therapeutic it seems to have been. According to the counter at the bottom of the left hand column, over 1000 people visited the blog on Monday and in total there have been over 26 000 'visits'. Many people have told us of how helpful it has been.

But let me assure you, it is a mutual arrangement. It has meant so much to us to be able to be in touch with all those who loved Ben and to be able to simply 'talk' to you. Thank you so much.

We started the blog anonymously at Ben's request: no surname, no location, no hospital name. And also at Ben's request we named it "Ben's Got Cancer". Ironically Ben knew very little more about the blog because he was in hospital without internet access from the beginning. Although I think he actually wanted it that way: it was to be a conversation between the family and friends.

So can I ask you a favor? Please don't leave us just yet. There are still things to be said and perhaps comments to be made. If you have tried unsuccessfully to leave comments, you could send an email to BensGotCancer@gmail.com perhaps with the subject "Comment from..." and we will publish it in the comments section.

One day in the next few weeks or months this blog will close or simply fade into disuse. But not yet. Our grief is helped by being able to share with you. What started out as efficient communication has become hugely therapeutic for us and many of you. So let's continue the conversation a little while yet. And one day we'll ponder the philosophical and psychological implications of such public sharing of such private moments. Perhaps it's a 21st century version of the extended and very public grieving common to many cultures?

Meanwhile, for those who are interested, an autopsy is being performed on Ben's body in order to learn as much as possible about the cancer. We are preparing for the funeral on Sunday; an unconventional day for funerals but one when we hope many will be able to join us. And we are all grieving in our own ways: personally I look for moments away from others when I can allow the deep ache inside me to well up in silent and sometimes noisy tears. They are silent right now and I am struggling to read this text. Thank you for listening.

Ben, 2004, after finishing his first marathon.

Thoughts - by LA

We find ourselves asking ‘how’ more than ‘why'. How did a young, fit, so very much alive young man get so sick so quickly? How could the cancer sneak up so silently? Just six months ago there wasn’t a cloud on the horizon.

Ben kept saying in these last few weeks that he would be fine but that it was ‘crap’ for everyone else. Right up to the last he was keen to make sure we were all OK. But when asked this week if he was worried at all for himself he finally nodded. Have no doubt. It was crap for him; more than for us. His ‘crap’ just ended more quickly and irreversably.

Something that kept him going and kept him hoping was that his fight would be an encouragement to others. His faith was strong and he knew where he was going. He was incredibly brave and uncomplaining.

May it all not have been in vain. We keep praying that great good will come out of great pain and loss.

I shall write another time with a list of thanks… In the mean time: Thanks. LA

Rest in peace Ben

(Monday December 8th, 6pm)

This afternoon Ben went to be with his Lord. After a short six month battle with NK cell lymphoma Ben has gone to a better place. As he said, he'll be fine but it's deeply sad for the rest of us. (Not quite Ben's words...)

Even after being put into an induced coma and intubated yesterday his body progressively lost its ability to function. By this afternoon, he was on drugs for his blood pressure and the respirator was breathing for him on 100% oxygen. Even so his lungs were not functioning enough to supply his body. He died peacefully without pain or discomfort at about 3.30 this afternoon.

We will write more later, but in the meantime: Thank you so much to everyone who has cared and prayed and sent messages in the last few months for Ben as he fought the good fight.

Funeral details are on the left of this page.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain for the old order of things has passed away."
Revelation 21:4

Time to rest

Ben is asleep again. The last 24 hours have been more difficult as Ben struggled to get enough oxygen and his temperature climbed. An hour ago the doctors decided that the best thing was to put him into an induced coma again and let him rest.

But unlike the last time two weeks ago, Ben was completely conscious and able to give his consent. Here's a wave to his friends before sleeping.

Sleep well Ben.

Who needs the surf? - by LA

Debbie the lovely physio approached Ben's cubicle in ICU this morning with a very large black iron structure suggestive of some kind of torture instrument. Debbie wanted to take him for a walk around the ward with it. Ben was definite in his short reply. "No! I'm going for a walk with James."

So there we were outside the hospital, Ben in his ICU bed with monitor and oxygen all connected. His 'walk' with his nurse James was reminiscent of 'Bed knobs and Broomsticks.' (It's a Disney movie from the dark ages. Treat yourselves if you haven't seen it.) No wonder he didn't want to go for a walk with Debbie. He slept soundly through the first half hour of his 'walk' outside, despite James, TC, Alice and I all trying to wake him up. James said he had been looking forward to going outside all morning so we were all disappointed for him.

Suntanning sleeping beauty (click the photo for the detail)

But he did wake up, and I reckon he was as happy as some of the happiest moments of his life. He said it was perfect and he meant it. He almost managed a smile. A gentle breeze, very warm sun and a pair of sunglasses was all he needed and all he wanted. His exhausted 'thanks very much' to James said it all. We think he will be the only patient to leave ICU with a suntan better than when he arrived. He's looking forward to doing it again. It was a big effort for James and we are very grateful to him, Ben especially.

Good afternoon - from Chris

TC and I have just arrived home from the hospital. It's after midnight Friday night and Ben's had a good afternoon. The four older boys watched Fugitive (a family favorite) after lunch. Then MD went in after school and he and Ben and LA watched an MD-rated movie. 

Gret came on for night shift and that was another high point. She decided Ben could do without the face mask for a while and replaced it with nasal oxygen prongs. At last he was free to speak without hissing and plastic distractions. 

Another highlight was when Katrina arrived from ward 3W with the particular icy poles Ben was craving. I arrived at the hospital about 10.30pm and was sent on a secret errand to buy Powerade powder because Gret said she couldn't find it anywhere. We found it eventually in the second Safeway we tried and Gret loved her present. We left the lad peaceful and looking like he might sleep at last. What a great afternoon!

"I'll be fine."

This afternoon Richard and Rob, ministers from our church, visited Ben to pray with him. Although he’s been a bit confused he seemed to be on the ball for the time together and his humor and timing were impeccable.

Richard talked about the possibility of Ben dying and the firm Christian hope of being with God. Thinking about his own death, Ben said: “It will be crap for everyone else. I’ll be fine. I’m just worried about other people.”

I was teary at times and at one stage Ben slowly took off his oxygen mask and pushed it towards me. I thought he was confused and told him he needed to keep the mask on. He said: “You look like you need it.”

Richard talked again of facing death with faith and said, “This is where the rubber meets the road.” Ben replied slowly but without hesitation, “It’s just doing it really slowly.”

Before leaving Richard asked if Ben had anything else he wanted to say. Ben asked, “Is it wrong to discard the hope of getting better?” I think he was asking the question so many of us are asking as we live with the tension between praying for healing but also facing the reality of Ben’s possible death.

Richard read from the Bible, Romans chapter 8:

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. We groan inwardly as we wait eagerly for our adoption as children, the redemption of our bodies ... We know that in all things God works for the good of those who love him, who have been called according to his purpose ... What, then, shall we say in response to this? ... Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? ... For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Is that a wave I see?

Lunchtime Thursday: Ben is still in Intensive Care and won't be going back to the ward until tomorrow at least. He's got a temperature again, a high heart rate and he's a bit confused at times. It's likely that he will have a liver biopsy soon to confirm whether the lymphoma is active in the liver.

And the winner is...

And the McC family wins the prize (see the comments on the previous post)... only 4 minutes ahead of Jill (well done Jill but sorry, you'll have to play again another time. And anyway: you're a nurse so you should have known!).

Yes, they are called tusks. And the prize? Chicken Townhouse of course: with banana, bread and butter. Enjoy!

Jokes - from LA

Can anyone guess what the blue things are called? Please let us know what you think. If you already know, sshh. Don’t tell anyone else. Apparently a coma doesn't stop nails from growing: Ben has ordered nail clippers tonight to deal with his long fingernails.

Yesterday as Ben was coming out of his sedated state he was cerebrally irritated. Noise of any type was intolerable. Lying on his back and with an oxygen mask over his face he called out loud and long: “No…….” He put his hand to his head in despair and said again “No! No jokes.”

I felt the small flicker of creative genius being snuffed out. Doubts crept in. Was this a reflection of Ben’s mental state or was it rather, a reflection on the quality of the jokes and the lack of talent in the joke teller? Despite my wounded ego life goes on and Ben is causing his own laughs today as he communicates with his brothers using the family salute.

In the next day or so they are hoping to move Ben back to 3W, his normal ward. Katrina from 3W visited Ben today (photo) and he told her that he would only go back if he could have a single room. Mmm...


(For the lawyers: all photo subjects have agreed to being blogstars.)

From Meg and the Sydney Morning Herald

The sleeper wakes

This morning the doctors turned off the sedatives and Ben woke up. The tube was taken out of his throat and he is breathing normally with some extra oxygen. He's not comfortable and needs some reconditioning but he is himself. We are very grateful to all the great staff in ICU. (Thanks Casey and Co: excellent work!)

Meanwhile his LD levels continue to rise, he still has a temperature and he needs daily infusions of platelets. None of which are good signs unfortunately.

It's Chicken Townhouse again for dinner tonight. Yes!
Chris

LD levels are high - from Chris (Monday afternoon)

Ben is progressing well according to the Intensive Care doctors. This
means his breathing is improving and he should be able to be weened
from the breathing tube tomorrow or Wednesday. He has semi-conscious
moments when he can obey simple commands, but mostly he is fast
asleep.

Unfortunately he has a temperature returning and his LD (Lactose
Dehydrogenase) levels are rising. This is not good news as it may well
indicate the cancer is at work. If it is, it means the chemotherapy
has not done the job. If this is the case then the outlook is very
grim as there are few medical options left.

Waking up - by LA

The waking up process has started for Ben. The Drs. are hoping to be able to extubate him on Tuesday which means the next couple of days are a weaning and adjusting period for him. So far, so good.

Various drugs have been turned off and his sedation level has been lightened. This means that he can move his legs a bit and is clearly uncomfortable at times. I guess that’s not surprising given that he has something like a garden hose jammed down the back of his throat.

His nurse of the last couple of days (Rosie who is fantastic) said this morning. “He’s coming out of this just like a young man should; like a bull at a gate.”

It's great seeing his eyes open a bit. It's even better seeing his eyes without the look of total confusion they had before he was intubated and sedated.

We are very grateful to the staff in ICU. They are dedicated, professional and caring. Thank you so much to you all.

Cheers for now and thanks to all of you too. We’ll keep trying to keep you up on the latest.

LA

Prayer meeting change of time and news of Ben

For those who go to the prayer meeting at Stu's place, the time has been changed from 5.30 to 5 on Sunday afternoons.

As for Ben: sometimes he wakes up a little and in those moments he is becoming more aware of things although it's obvious his awareness is very foggy. The doctors are happy with his progress this morning and anticipate another couple of days preparation before taking out the respiratory tube.

The long wake up

The doctors are happy enough with Ben's state to begin the two or
three day process of getting him ready to wake up. This means a less
deep sleep and some discomfort. More updates tomorrow.

The numbers

Everyday when we visit Ben we anxiously watch the all-important
numbers on the screen. Temperature 37.2, blood pressure 141/70 (mean
of 89), heart rate 96, blood oxygen saturation 97%, respiration 15 per
minute, central venous pressure 10, time 6:51. This morning things are
still stable.

Chicken Townhouse with banana

Meanwhile... Ben is still stable.

Chicken Townhouse

Meanwhile... Ben is still stable.

From LA

My sister has been staying this week. She said the other day, "I don't
want to tell people that Ben is even slightly improved because then
they'll stop praying." Please don't. But he is improving. His oxygen
level on the ventilator is down, his neutrophils (which fight
infection) are up, his temperature is down and his blood pressure is
stable. We are very thankful. The ICU staff will keep monitoring him
over the next couple of days and all being well, they will be able to
remove his breathing tube and wake him up.

In the meantime Ben is trying to inflict grievous bodily harm on his
carers. His night nurse is sure he has a hand injury from Ben crushing
his hand in one slightly more wakeful episode. Pushing and shoving
while he was quite confused he nearly managed to escape from his bed
with his 5,000 tubes trailing behind him. While it's not pleasant
watching these episodes we can't help seeing it as a sign of Ben's
famous fighting spirit.

On the home front, we ate Chicken Townhouse last night. I know, I
know, it's like the end of an era. We hope there won't be a collective
global 'groan' at this news. We took a photo to post later today. And
don't be sad for Ben. There is more Chicken Townhouse where that came
from.

We still want to say thankyou to so many people for their acts and
thoughts of kindness. So many messages, so many meals, and such great
hospital staff. Thank you.

Hanging on

This morning Ben is still holding steady with a normal temperature.
His blood levels are rising slowly so we hope to see some improvement
soon. Our constant plea is "Hang in there Ben" so Michael sent us a
photo to illustrate. (Yes it is a genuine photo, but not of Ben.)
Chris

You're a brilliant team - Thank you!

This blog is to all the people who have been looking after Ben so
well. Doctors and nurses and admin. people and kitchen staff and
cleaners. It's so hard to express how much we appreciate your care.
Thank you! You are doing a fantastic job.

Thanks to everyone:

- to a caring consultant T. who everyone speaks so highly of, and his
chirpy assistant L. who is always friendly and helpful. And of course
the lovely registrar HL who is willing to massage backs on her knees
in the corridor (it's great to see you back!) and A and J who were
always willing to answer our questions.

- to all the fantastic nursing and other staff in 3W who feel like
family at our home away from home: to K and Y and S and J and L and K
and the other L and the other S and the two N's (one with a double k)
and R (did your Dad get it wrong?) and K and D and A and E and S and L
and J and K and J and A and J and M and N and E and M and M and
another two L's and E and F and K and A and M. Also E and K and S and
M. And the support staff: S and J (muchas gracias J por hablar en
Español con Benjamín!) and R and R and J on the phone and N trying to
keep us all clean. Thanks guys so much! We hope Ben will be back with
you soon.

- and to the great team in ICU: to those who give Ben the intensive
care he needs: S and S and J and J and A and L and S (who will move on
to higher places next year) and also to V and C and R and R and G. And to the doctors who do a professional job and keep us in the loop too: G and C and M and E and D and more whose names I've forgotten.

- and to M and her team in the kitchen who provide large plates of hot chips at odd hours and who check up him in ICU.

- and to those we've forgotten to mention in our list of letters: just pick your own please: ABCDEFGHIJKLMNOPQRSTUVWXYZ, and sorry for forgetting you!  

So, on behalf of the family and all Ben's friends who love him so
much: thank you to all.

Meanwhile, this morning Ben is still in critical but stable condition.

Chris

A thousand words...

Sleeping Beauty - from Chris

I visited Ben this morning. He has had his first good night's sleep for ages and will stay asleep for a few days at least. He is stable, so now we wait to see if he can fight off the infections.

From TC

Hi everyone,

It's been a long 72hrs and an even longer 2 or 3 hrs. As you know
Ben's been in Intensive Care for the last three days. His temperatures
have been up and down and his breathing has been very disturbed and
rapid. It wouldn't be inaccurate to say that he's been fighting for
his life.

He's been getting chest X-rays once or twice a day to check his lungs
for fluid. At seven tonight he had another X-ray which revealed high
levels of fluid on his lungs and he had become severly agitated just
before that, breathing 60 times a minute (15-20 or so is normal) and
perspiring a lot. At this point the staff decided that he had to be
intubated urgently. So he had five nurses and a doctor around him all
moving quite fast, organising the procedure.

This wasn't a "hey how about we put a tube down him so he's more at
peace?" It was a, "this is urgent, if we don't get his breathing
sorted out very soon he's going to be in serious trouble". This is
Intensive Care we're talking about: you only work quickly if it's
serious.

The procedure went well and Ben's now breathing more peacefully on a
ventilator but he is in an induced coma and will be asleep for around
a week the medics think. His condition is very severe and he is no
doubt fighting for his life. He's shown a lot of bravery and no
bitterness but is still in a serious condition. Keep praying and
fighting with him.

Getting better?

Saturday afternoon: It seems Ben is starting to show signs of
improvement. His temperature is back to almost normal as is his blood
pressure. He is still very confused but occasionally shows signs of
recognition and sense. If he does keep improving he may be out of ICU
on Monday.

Holding on...

...but not getting better.

From TC-Friday 7pm

Ben's not good but he is in good hands. He is currently plugged in to
multiple hoses and cables. He's not overly responsive but gives the
occasional indication that he's still holding on. Keep him in your
prayers - it's a difficult time and he needs your support.

ICU still

Ben is still in intensive care and has not improved overnight. He is
quite confused, has a high temperature and his blood pressure is
dropping. (He won't be getting or answering messages on his phone until
he improves considerably!) Thank you for your prayers and care.

Chris and the family

ICU

Ben's now in intensive care as his blood pressure and temperature aren't doing what they should. He's not communicating rationally (which is quite funny at times) but he is comfortable. We thought that when he is better he would like a picture to remind him how sick he was.

Legs

Ben’s fashion sense has always been strong. When he was six he wanted a yellow rubber fisherman's rain hat so he saved up some birthday money and bought it. Since then he’s become much more conservative and wears the styles and labels that everyone is wearing. Its good to see that he may be reverting to his more creative dress sense. I’m not sure if he’s hoping to set a trend?
LA

PS Don’t give up on the chicken townhouse. It’s still waiting. We might have to eat it without Ben.