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.

Quick update

Good morning! Ben's not doing too well in the last 12 hours. He seems
to have an infection and is running temperatures of about 40C. His
blood pressure also dropped last night. The source of the infection is
not known (or perhaps it is lymphoma and not infection?) and he is on
antibiotics, antivirals and antifungals as well as blood and platelets
and numerous other concoctions. He also decided to use a GCSF again to
promote white blood cell production but it gave him excruciating bone
pain the last two times.

Wires and tubes

(Click on the photo for the detail)

Messaging

Every morning I message Ben in hospital (yes he was in overnight) to
see how he's going. I try and send a different message everytime. This
morning our conversation went like this:

Chris: "?"

Ben: "!"

5 minutes later:

Ben: "Platelets are 5, so nose bleeding understandable. I'll get
some this morning. Morphine is an all-rounder and fixes my mouth
almost completely alongside panadol which was a relief. Temp is back
to normal but they're doing antibiotics and blood cultures. Think I'll
be in here for the moment. I slept some from 4am onwards, nothing
before. Not sure why, cos I had no pain. there's your update."

Chris: "Great report. Can I blog it?"

Ben: "Thought you'd say that. Yeah."

avagoodweegen

We've seen signs of the old Ben this weekend. Not quite cracking jokes and hanging it on his brothers but not far off. MD said that he and Ben had had breakfast together on Saturday morning, just the two of them. 'He didn't say anything' said M 'and so I didn't either'.

On Saturday he and Sally sat in the sun on the driveway. A small
enthusiastic dog with his owner was very excited to see him and with
furiously wagging tail he inspected Ben. The threat of being licked
mercilessly was a worry. The combo. of dog lick, still oozing scar,
and low blood counts (and falling over the next few days) did not
seem a good idea. So the dog was sent on his way. Last night Ben went
to a friend's 21st party where he met up with lots of the old gang,
many of whom he hadn't seen during the month in hospital.

Yesterday he sat outside again sunning his incision scar. He also read
a book. I know that might sound a bit strange to mention but he
honestly hasn't had the concentration or the interest to do anything
for over a month now, so reading a book was something to do with
connecting with life again. He had his afternoon hospital appointment
at about six and then went to church.

Oh... an apology to my Mother, the most unassuming chicken townhouse
cook! According to reliable sources, the photo makes her meal look
like something you might (or might not) feed to your dog. It is
however not anything you'd give to your dog and it's a general
favourite with anyone who has eaten it. A friend dropped in a beef
casserole last night. She called it a 'beef shack' casserole, because
she couldn't claim it had reached the lofty heights of a 'townhouse'.
LA

Chicken Townhouse (frozen)

Stop the press

It's Saturday at half past midnight and we were wrong. Ben's at home asleep downstairs. Why anyone would want to read on a blog of all the chopping and changing about where Ben sleeps at night, I don't know. But I guess it gives you a feel for the fun and games of living life by the day and the hour. Yes, at about 8 tonight he messaged us to say he was fit enough and keen to sleep at home tonight. And with one friend dropping in there were moments of smiles and laughter around the table. Not common from Ben these days and much enjoyed by all. (But no: I'm afraid the chicken townhouse was back in the freezer so it was pasta and pizza for tea at the good latin hour of 10pm.)

Obvious questions...

Meg asked in a comment on the last blog: "At the risk of asking something obvious... how long is each round of chemo? How many days/weeks?"

I think the obvious questions are the ones people might want to ask... at least that's what I tell students. Answer: Ben's on his third type of chemo. First it was CHEOP (an acronym named after the drugs involved) which is given intravenously for a couple of hours every fortnight. But that didn't seem to control the lyphoma. Then it was PACE-BOM, a two weekly cycle, again given by i.v. for a few hours, with PACE one week and BOM the next. But again it didn't seem to be effective enough and when infections delayed the chemo the lymphoma advanced rapidly.

So now it is "dose adjusted EPOCH" which is stronger than the previous regimes. This one involves giving the drugs continuously for four days and then three or four weeks to recover enough to start again. So Ben was on the chemo from last Friday for four days. Now he just needs anti-viral drugs every 12 hours. The idea was that he would visit the hospital twice a day for that but with his total exhaustion and some pain from the operation it seems better if he stays in hospital for the moment. The chicken townhouse will have to wait.

The Continuing Saga of…

... the chicken townhouse (of course). I had it out of the freezer for only a minute this morning thinking that Ben might like it tonight. I then heard that he will be in hospital again tonight. I imagine he’s kept the hospital kitchen busy all day today. 

‘Chicken salt’ really had the kitchen staff wondering the other day. The menu lady was quite sure that they didn’t have chicken salt but said she’d check. They did have it and it appeared on Ben's lunch tray to go with his large helping of chips and can of Lift.

Could food be the reason he has gone back to hospital? Maybe I’ll see if they can do ‘Hospital kitchen in the home’.  And what of the chicken townhouse? I shall keep you posted. Thanks for all your letters and love. LA

PS from Chris: Ben is staying in hospital because of stomach pain. We hope it is just a post-op thing and not lymphoma.

Nothing much to report.

There's nothing much to report... but knowing that some people check this blog regularly we thought we'd let you know. Ben's back in hospital tonight (Thursday). He has to check in twice a day for a couple of hours of i.v. anti-viral drugs so he decided to stay in overnight tonight rather than have an early trip to the hospital in the morning. He's totally exhausted and feeling pretty down. We hope he picks up in the next few days and can enjoy 2-3 weeks of recovery before the next round of chemotherapy.

He didn’t feel like chicken townhouse anyway

Ben's lying on the couch in the darkened lounge room and apart from coughing he's not up to much. I'd say he's feeling pretty lousy. He needs to go back to the hospital every 12 hours for the last of his chemo. The every 12 hours means he can be at home.

I can't help wondering if he's going to wish he was back in hospital before long. It's noisy here. It's busy here. It's not nearly as convenient as a hospital and there is no buzzer to call a cheerful attentive nurse to his side. If he had a buzzer (what a dreadful idea) the most he'd get would be a harried mother who would take far too long to answer his summons.

We love having him home already but I wish he felt better than he does. Please hang in there with him. This is likely to be a long and severe journey. Thanks for all you've all done in different ways.
LA

Home again. Home again?

I ummed and aahed about whether to get the chicken townhouse out of the freezer for dinner tonight. Ben's grandmother cooked it knowing that he liked it and Ben said yesterday that he would be home today. But last night I decided not to get the townhouse out in case he didn't get home.

At this stage of the day it looks like my caution has paid off. We're now not sure he will be home today because they can't provide a 'hospital in the home' visitor to give him the last of some chemo. It seems that things change all the time; I imagine Ben might be a bit frustrated. On the other hand this chemo round has worn him out so much that he might be too pooped to care one way or the other. I'll let you know how we go.

LA

Anyone for sunnies?

I'm just back from the hospital. Ben's says he wants to buy some sunglasses. I asked him why and he said, "because the sun's bad for your eyes: it can give you cancer." That's his dark humor at work. And yes, that is Ben in the picture.
Chris

Just when hospital food was getting boring...

We met Mileva on Saturday. She's in charge of the hospital kitchen in the afternoons. I told her that although it was between meals, Ben was craving a plate of chips. "No worries"... and the chips were ready in 10 minutes. She also gave Ben a copy of the 'secret menu'; all the things that are not on the main menu but that can be ordered if you need them. So now Ben is enjoying more culinary delights than your normal overnight patient. (Click the menu to see Ben's additions to the standard menu for tonight's meal.)

Chris

So far so good... by LA

How are things today? Today is a good day. Ben's almost finished two days of the new chemo regime and feeling more positive and well in himself. Maybe that's because you're all praying for him. Hoping he will be home in a few days to recover from the drugs. Meanwhile the kitchen staff are feeding him massive bowls of hot greasy salty chips, and he's loving it.

Hang in there Ben - From LA

I remember an energetic and determined four year old who stood looking at a new two wheeler bike that had no trainer wheels. I remember that he wanted to be able to ride that bike immediately. I remember that he went down the hill in our backyard over and over and over again until by the end of one day of perseverance he could ride it without falling off. That's why I know that if anyone can beat this #*&@ cancer Ben can. It would be great if we could all pray for his fighting spirit. Pray that he has enough energy and optimism not to be swamped by the constant 'bad' news. Thanks everyone. LA

Here we go again...

   We are very grateful that Ben could start chemotherapy again tonight after a delay of 3 weeks. His new regime is called "dose adjusted EPOCH" where EPOCH stands for the five drugs involved (along with antibiotics and other pills and potions to deal with bugs and side effects.) Today his doctor confirmed what we knew; that his spleen was cancerous. He also confirmed that the biopsy of the liver showed that it too was affected. This is not surprising but it is discouraging. So at this stage we hope that the new and more aggressive therapy will force the lymphoma into remission. Then after one or two rounds of monthly chemo followed by a month or so of recovery Ben should be ready for a bone marrow transplant.
   Meanwhile he has heard that his application to study medicine has not been initially successful although further offers will be made in the next month or so. You can imagine that this leaves Ben in a state of chaos and uncertainty.

Hospital can be so boring!

After 4 weeks in hospital things can get pretty boring. Add to that various tired family members at midnight and it's a recipe for disaster.

Is that really Macdonald's chocolate thick shake Ben is having intravenously? (Click on the pictures for a closer inspection.)






And now what is Ben getting up to? Taking TC's temperature while AC stands guard to make sure a nurse doesn't catch them?

The details... by Dr Chris

     No, I'm not a doctor and nor do I understand all the intricacies of NK-cell lymphoma. But as some people are interested in the details of Ben's diagnosis, here is what I understand. But if you don't want the details, feel free to browse elsewhere!

     Ben had a small lump on his calf in May which was first thought to be a cyst of some sort. It grew a little and he was given antibiotics in case it was an infection. It grew more and a trip to hospital resulted in a biopsy and diagnosis of some form of lymphoma - a cancer of the white blood cell system (lymphocytes) which protects against infection and disease. Initially it was thought that Ben had the uncommon T-cell lymphoma but it's almost definite that it is the extremely rare NK-cell variety.

     NK-cell lymphoma has a grim prognosis and if it spreads throughout the body the only real hope of combatting it is with a bone marrow transplant (more on that another day.) Radiotherapy can be used on one part of the body and chemotherapy can reduce the cancer activity inducing a time of remission, hopefully long enough for a bone marrow transplant to occur.

     By the time the lump was the size of an apple Ben started on daily radiotherapy. The hope was that the cancer was limited to his leg and that the radiotherapy would knock it off. Then chemotherapy would do any 'mopping up'. But there were also worrying signs of activity in the spleen which we hoped were unrelated. Following radiotherapy Ben started chemotherapy at a hospital much closer to home. But by this stage he was having classic symptoms such as night sweats and fevers. Then the initial chemotherapy seemed to hit the cancer quickly and his enlarged spleen decreased in size.

     Chemotherapy is a potent mix of drugs designed to kill off rapidly growing cells. This means the cancer cells are targeted. But so are all blood cells, which in turn means that the immune system is depressed and the patient is very prone to infections. In Ben's case he has had a number of infections (the first symptom being a high temperature), which mean returning to hospital immediately. Infection also means a delay of chemotherapy until the patient is strong enough. But the lymphoma itself causes fevers so it is often hard to know if the lymphoma is at work (in which case it's important to continue with chemotherapy) or if infection is the cause (in which case delaying chemo is necessary.)

     A principal effect of the lymphoma is that it destroys blood cells. In Ben's case his blood cell levels (especially neutrophils which fight infection and platelets which are responsible for clotting) have been very low at times. This means constant blood checks and lengthy hospital stays... Ben has now been in hospital about 4 weeks due to various combinations of bleeding, infection, pain and low blood levels.

     Last week, as Ben didn't seem to be recovering enough to go on with chemotherapy, the consulting doctor recommended taking out his enlarged spleen (and gall bladder too). A lot of blood flows through the spleen and the hope was that removing the spleen would remove a large source of the blood destruction. But there were also negative considerations such as the ongoing problem of being spleenless as well as the danger of surgery when blood levels are so low. But the result has been encouraging so far: Ben's levels are the best in a long time and there is no fever. Yesterday the surgeon said the spleen was not 4 times normal size, but 5 or 6!

     Enough details for one day... more on bone marrow transplants another time.

     We hope for chemotherapy to restart tomorrow and we hope Ben will be back at home next week before another round starts. Thank you for your prayers and many signs of care.

PIC versus Hickman - from LA

Hickman wins! This afternoon Ben will be 'fitted' with a Hickman line to replace his PIC. A Hickman is put into a large vein just above the heart. This will mean that it is easier to administer the chemotherapy and other intravenous drugs. It also means that Ben won't be jabbed repeatedly while the nurses try to find a vein in his arms that doesn't collapse. Ben did have a PIC line which is also a semi permanent canula but is put in the arm. Two of these failed; both becoming infected and so they decided on a Hickman.

It's looking hopeful that Ben will be able to start his new chemo regime tomorrow. The new regime is a step up (agan) to a very potent (the most potent) concoction. It involves four days of continuous chemo and then a month off to recover. It's not for the faint hearted this cancer journey!

When I went in to say hi this morning a physio and Ben's nurse were getting ready to take him for his first post-operative walk. It reminded me of 'Pride and Prejudice' (the BBC version) when Elizabeth Bennet is urged to take a 'turn about the room' because it is 'so refreshing'!

Waiting...

We sat in a corridor on Sunday near the theatre lifts waiting for Ben to return to the ward after three and a half hours in surgery. MD, Ben's 8yo brother, had gone to stand outside the lift to see him first. After a few minutes Ben’s trolley was trundling past us. We knew he was doing OK because as he passed us he stuck up his middle finger in the family salute which TC responded to in kind. We all laughed and his nurse said that he had asked her if he could fry up his spleen and gall bladder. This is his drugged state, and we confess that we like it. When the morphine kicks in he is happy and relaxed and funny. Oh, one more thing: AC thinks he can sell the spleen on Ebay. He is offering it at a bargain price on account of the cancer in it. And it really is a bargain he says, it's four times the size of a normal one. We’re not sure it will sell. Thanks for hanging in there with him.

LA

Fighting fit!

The morning after... and the patient is pretty fit. The surgeon is very happy with the result and says he's looking great. The spleen was four times normal size... so it's 'better out than in' I guess. And for those who like the detail: here's the photo with all revealed (almost). I asked Ben about putting the photo here and he said 'no worries' but he didn't want to offend anyone so if you are likely to be offended... please don't be. (Click the photos for more details.)
So now we wait for Ben to be well enough for more chemotherapy. He will go on to a more aggressive chemo regime which involves a number of days of constant chemo followed by a month recovery time before the next round.
Thank you so much to everyone for your thoughts and prayers.
Chris

All's well...

After being postponed by an emergency caesarian Ben went into theatre about 11 this morning and emerged after 3 hours of surgery. He's on a push button "on demand" morphine drip which seems to lift his spirits! The operation was not by 'keyhole surgery' as we hoped because the spleen was too big. So he has a six inch slot from navel to sternum plus 5 or 6 tubes going in or out of his body for one thing or another. We're hoping for a quick recovery so he can get on with chemotherapy as soon as possible.

Chris

From TC

Hi all,

Just a quick note about Ben's phone and its usage. Ben's on an antiobiotic which for some reason has (expectedly) caused his fingertips to go numb which means that messaging is difficult. This is why sometimes messages back will be scarce or non-existent. Please don't take this personally and please don't let it stop you messaging him. I think encouraging messages are important and just keep him occupied, just don't necessarily expect one back!

Thanks for the support, keep it up!

TC

Surgery

Ben goes under the knife at 9am Sunday to remove his spleen and gall bladder. His temperatures are high which is a pest... so it's big doses of dexamethasone and fill him up with platelets so his blood will clot and not run down the drain.

Introducing..... "Ben's got cancer"

Hi folks,

At Ben's request we've set up a blog for people who are into instant information and can't wait for news by carrier pigeon. So here it is!

We set up this blog and told Ben it was called "Blogging Ben". "No way" he said, "Call it Ben's got cancer."

Who knows how it will work exactly. I guess someone will write updates every couple of days about how things are going with the battle with the big 'c'.

For those who are relatively up to date, the latest is that today Ben decided on his doctor's advice to let them take out his spleen and gall bladder. If the spleen is a cancer site then it will help to get rid of it... even though it won't get rid of the cancer. But it should enable Ben's blood counts to recover more quickly. I told him it would also make him lighter... but he's lost 15kg already so I'm not sure that encouraged him.

So, Sunday is the day for the op and we're praying all will be well and that recovery will be so quick that Ben can start chemotherapy again in a few days.

Will get back to this soon...

Cheers,
Chris