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.