Click
Here to see Graham’s most recent hospital
bill (in US dollars)
20th February 2009
Day +198
It has been a while between updates. I am sorry and I know a few
of you have been checking to see how Graham has been getting on.
We are all well and enjoying
getting back to some sort of normality but along with everyone
else we watched in horror as the bushfires raced through
country
Victoria
claiming
the
lives
over 200
people on Saturday 7th February. Our thoughts are with the thousands
of people who have lost their loved
ones,
their homes and have been injured by this disaster.
Thankfully, Graham’s knee infection is resolving but MRI results
this week showed that the bone around the joint is necrotic and
he will probably require a knee replacement at some stage but the
Docs don’t seem too worried at this point.
It really pales into insignificance
(easy for me to say!) when you put it alongside the fact that it
is over 6 months since Graham’s transplant and results from
a blood sample sent to Seattle show that he remains 100% donor
and there is no sign of leukaemia! And this is the longest time he
has spent out of hospital since returning to Melbourne in October.
We continue to be blessed and the amount raised has reached over
$450,000. To think it is less than 12 months since we started our
fundraising and we have almost reached our orginal target of $500,000.
Unfortunately, Graham’s treatment and recovery didn’t quite go to
plan! We have the desired result but it came at twice the cost.
Our mortgage broker, Jeff Oberman at RAMS in Bentleigh who helped
us re-mortgage the house to have enough money to start the treatment
last year, saw some of the recent press on Graham and he rang me
a few weeks ago to say that he had organised a 6 month break on our
mortgage payments with no interest during this time. We were just
blown away by this loving act and are so grateful to have 6 months
breathing space while we get back on our feet.
The recent media stories about Graham resulted in $20,000 worth
of donations and we thank everyone who contributed to Graham’s fund.
We have more fundraising events planned for this year and I will
post details soon.
Nadine Evans, winner of the Hawthorn Football Jumper.
Congratulations Nadine and C’rn The Hawks (great win today in the
NAB Cup against Melbourne!)
16th January 2009
Day +163
Well it has been a busy week!
Graham got out of hospital on Monday
and we had considerable interest from the media about Graham’s
battle. Please click on the links to the right to see what we have
been up
to.
We had a very quiet holiday but Graham was out of hospital in time
for Christmas and it was an incredibly special time for us. To know
that Graham is free of leukaemia and to be all together at home was
just the best feeling. We hope that the trials of 2008 are well and
truly behind us and we look forward to a peaceful 2009.
Our raffle was a huge success and has raised $25,000 towards Graham’s
outstanding medical bills.
A big thanks to all our supporters who took time out of their busy
lives to sell tickets and to my brother Damian who processed all
those books of tickets!
I am pleased to annouce the lucky winners below:
LG Plasma 50″ TV
- Brendon Leggatt (QLD)
Swiss Watch - Rob Berwick (NSW)
Hawthorn Football Jumper - Nadine Evans (VIC)
McLaren F1 Memorabilia - Nancy Lander (NSW)
McLaren F1 Memorabilia - Alison Donaldson (QLD)
Jason Ackermanis’ Footy Boots - Janelle Parry (VIC)
Murray River Break - Terry Lane (NSW)
Winery Package - Nick Croft (VIC)
iPod Nano - Geradine Carra (VIC)
Brisbane Football Jumper - Helen Crossley (NSW)
South Sydney Football Jumper - Bernadette Allen (NSW)
West’s Football Jumper - Peta Wilkinson (VIC)
Congratulations to you all!
As you know, when we returned from Seattle at the end of October
last year Graham was in a very precarious position. His immune system
had
been
striped
bare by the stem cell transplant & the subsequent treatment
and though he no longer had any sign of leukaemia, he was battling
a very rare, life-threatening fungal infection.
This was another tough battle for him and meant 5 weeks in hospital
undergoing all sorts of procedures including several injections into
his left eye, skin, liver and bowel biopsies. He continued to face
each setback with the same quiet courage that he has shown over the
last 21 months and I am pleased to say that he has surprised his
doctors once again and has beaten the infection.
He spent 3 weeks at home over the Christmas break and started on
the road to wellness. Alastair Clarkson has continued to be a great
support to us and is helping Graham regain his strength. They started
a walking program together by the bay at Brighton on Christmas Day
and they will be setting some goals together after the summer holidays.
I am sure we will have a much stronger Graham by Christmas Day 2009!
Unfortunately, the program has been put on a temporary hold as Graham
had another setback on the 30th Dec. I had to rush him to the emergency
department with an infection in his blood and right knee. He has
had 3 operations to wash the joint out and a stay as an inpatient
once again to receive high dose IV antiobiotics. It meant he was
in hospital for New Year but he is doing really well and we expect
him home by the end of the week.
He continues to fight the most amazing battle and I can honestly
say he has NEVER once complained. I am sure that his equanimity (some
may say stiff upper lip!) has helped his many recoveries.
Elise Mooney from Channel 9’s A Current Affair filmed a follow-up
story on Graham before Christmas and it should air in the next
couple of weeks.
Click on the image to the right of Graham on the beach to watch
the original story.
I will send another email once I know when it will be shown so you
can set the recorder!
23rd December 2008
Day +139
Well Christmas is almost upon us and Graham continues to do well
with his fungal infection almost completely resolved.
He continues to surprise his Doctors with the opthalmologist
at the Alfred saying this week that “his eye infection was
ridiculously improved”!
A big thank-you to Julia Blanka, an artist in Adelaide who recently
held an exhibition of her work antitled “Art for Graham” which
aimed to raise money for Graham. Go to www.myspace.com/juliablanka for
a look at her work.
Julia said “The exhibition went really well, with 9 paintings
being sold and $70 worth of donations alone for Graham. I
managed to raise $550 for you and I have a lady interested in another
painting so this amount may raise
to be a little over $600. We had Barry
Crocker pass through the
exhibition a week or so ago who really loved the paintings and
thought the cause was great.
I hope I’ve raised some awareness in regards to Graham which will
let the donations keep coming in. I would
like to thank you for making my art exhibition
an event about awareness and strength. It was very inspirational
for me, and it has inspired me to do more exhibitions for a cause All the best for you, Graham and the rest of the family. I hope
2009 is the start of a healthy, happy and prosperous new year for
you all. Julia ”
Thank-you so much Julia. As I have said before, every step along
this jouney has brought us into contact with the most genorous
and kind people. Julia found out about Graham’s plight from an article
written by the Grandfather of Poppy’s schoolmate Cheyanne.
Please click to the right for some pics from the exhibition and
stay tuned to find out the winners of our raffle…
A Current
Affair filmed us yesterday for a follow-up and it should
be shown some time after Christmas. I will let everyone know the exact
date as soon as they let me know.
Thanks once again for your continued support.
2nd December 2008
Day +118
Graham is home!
All is well and we are very relieved and happy.
The picture to the right was taken by Janine Mitchell just after
we stepped off the plane almost 5 weeks ago. Graham went into the
Alfred
hospital the next day and arrived back home on Monday night this week.
He goes into the hospital 3 days a week for blood tests and IV meds
and a nurse comes to us the other days.
We are all so pleased to have him home and thankful that his fungal
infection has cleared up. He is very fatigued and thin so he will
be taking things slowly but with some decent food and the comforts
of home, we are sure he will regain some of his strength back soon.
On another note, the fundraising is continuing and the very generous
Sam Mitchell, Hawthorn Captain, donated his prize for winning The Age
Footballer of the Year, a Hyundai I30 car, to the fundraising campaign.
What a star! On the same night, Alastair Clarkson won coach of the
year, so a great night for the Hawks.
I have spoken to Hyundai and they are willing to keep the car and
give us the purchase price to go into the fund, which will take us
over the $400,000 mark!
Here are some articles
about Sam’s donation a some pics of Sam & Alastair with their trophies
on the night.
19th November 2008
Day +105
Graham is past the critical first 100 days and while he is
still in hospital things on the whole are looking good. A quick update:
He no longer has Graft vs Host Disease (GVHD) (negative Skin, Colon &
Liver Biopsies). This is fantastic news, as they can now taper his
immunosuppressive meds. They actually gave us a very sobering message
before we left Seattle, saying that if the GVHD didn’t resolve,
it would be a very unlikely that he could overcome the fungal infection.
The tests from Seattle didn’t give a clear picture of what combination
of drugs would be best to fight the fungal infection, so they are keeping
him on all 4 until they see any change. The infection seems relatively
stable with only a few new skin lesions and the remainder are looking
better. He did develop what they thought was an infection behind
his left eye but they have been unable to definitely say whether
it is
the fungus or not (even with a biopsy - ouch!). It grew quickly over
a couple of days and they were worried he may lose his sight so
they have been injecting it with anti-fungal drugs
just in case.
Since then, it has remained the same size and the hope now it that
as he comes off the steroids and other drugs that are suppressing
his immune system, he will be able to fight the infection himself.
Other good news is that he has come off the TPN (IV Nutrition) and
is eating normally.
So we are travelling in the right direction and now look towards
Christmas and a regaining normality in 2009.
8th November 2008
Day +94
We arrived home tired but safe and sound last Thursday. I am
sorry about the lack of updates in the interim but it has been an
emotional week. It is
so wonderful to be home and I have been crying at the drop of a hat
but as Jack said with tears in his eyes on arriving to the house,
“don’t worry Mum, they’re tears of
joy”.
Sweet
boy.
Graham spent one night at home and was admitted to the Alfred
Hospital for
IV treatment of his fungal infection on the Friday. At admission,
we found out that the fungus that is causing his infection is very
rare. What
else?
It
is called Scopulariopsis
Brevicaulis and they have never seen a case like this before
at the Alfred. So they have been doing lots of reading up and consulting
with experts in Adelaide to work out the best treatment. Unfortunately,
it is very resistant to therapy and may spread quickly to other organs.
As a result, Graham has had all
sorts
of
tests of his lungs, brain,
bones
and heart. They also added another anti-fungal
to
the two he was already receiving and while there have been a few
new skin lesions, the infection isn’t running rampant and hasn’t
spread away from the skin. So that’s all good.
We are waiting on sensitivity testing on the strain of fungus that
Graham has and hopefully the results will allow his Docs to target
the therapy rather than giving a lot of anti-fungal drugs as some
of them have nasty side-effects such as liver damage.
They
started to taper his steroids mid-week (which will help with
his immune reconstitution and hopefully increase his ability to fight
the infection) and his diarrhea hasn’t worsened, so this is also
good. The worry is that if he still has any active
GVHD,
the steoid taper
will make it flare again, necessitating an increase of immunosuppressive
therapy, making him even more susceptible to infections and reducing
his ability to fight the current one. He will have a colonoscopy
with a biopsy next week and as his Doctor said
to
me,
we will be
hoping to see a damaged bowel but no evidence of active GVHD.
This morning we found out the wonderful news that Graham has no minimal residual leukaemia (MRD).
This result is essential for long-term survivial and was the
aim at the beginning of our journey so it is impossible to over-estimate
the importance
of this news. As Prof MacIntyre says
in her 2005
paper on the test, “molecular negativity is indispensable
for survival…in this rare, poor prognosis, subset of AML.” Bear
with me while I explain a bit more..
Graham’s disease was characterised by a rare (of course)
translocation of
genes 6 & 9, also known as DEK-CAN as shown to the
right. The most sensitive testing available for this translocation
is a (RQ)-PCR molecular
test done in Paris by Prof Elizabeth MacIntyre. Last year we sent
her samples from Graham’s initial diagnosis and when he was in remission.
The reading at diagnosis was 141
and when in remission 0.14. Bear in
mind that no disease was detectable at remission by any of the tests
done in Melbourne and while there was a 3 log decrease on the PCR
test from diagnosis to remission, there was still detectable disease
and
sure enough, Graham relapsed shortly after. So it is an extremely
sensitive test and in Prof
MacIntyres’ paper again, you can see that
the only survivors are the ones that reach molecular negativity.
Don’t want to beat you over the head with it but this is the most
wonderful news.
It was, however, tempered somewhat by the fact that Graham woke
with chest pains this morning and an ECG showed ST
changes which may indicate a heart
attack. He has been transferred to the Cardiac Unit for 48 hours
of observation but we are not too concerned at this stage. His pain
has subsided and an echocardiogram showed
that he has a very small pericardial effusion (accumulation of fluid
between the pericardium and the heart) which could indicate pericarditis.
This
could be caused by the infection or may be due to the radiation and
chemo he received prior to the transplant. If so, it should resolve
of its own accord.
Even with the effusion, chest pain, his continuing infection and
immunosuppressive therapy for the GVHD, today’s news of no MRD really
is a “modern-day
miracle” (thanks Cath for the Fr Bob Maguire quote). He still
has a long way to go to be fully recovered but he has no leukaemia!
We
feel
so
lucky
and
thankful
and
we are not
giving up now.
Translocation (6;9). Shown in this partial karyotype is the translocation
(6;9)(p22;q34) seen in AML M4 (or M2) and often associated with marrow
basophilia: breakpoints are indicated by arrow
Gene involvement. In the schematic presentation of the translocation,
the genes involved are DEK-CAN, as shown.
25th October 2008
Day +80
Well, it looks like we will be heading south for the winter much
sooner than we thought!
We had planned to leave on the 3rd Nov but
last week Graham developed a fungal infection in his leg and on
Friday his Doc said we should
get home.
Essentially he is well but they think we should use this
window
of opportunity in case the infection gets worse and he needs
another hospital stay. So we leave on Tuesday evening! I can’t
quite believe it.
He is being treated with two IV anti-fungals
which I will continue to administer on the plane and we will go
to the Alfred when we arrive in Melbourne. You just can’t be too
careful with any infections while he is still on immunosuppressants.
I would also like to thank our new friend Michelle who
has recently arrived from California to be the 10th person to receive Dr
Delaney’s expanded cord blood transplant.
She made mention of
us on her blog and
her supporters have generously donated to our fund as a result.
Michelle and her team have been doing a fantastic job, recuiting
almost 16,000
people to the bone marrow register in her search for a donor
since 2007.
Unfortunately, she relapsed in May of this year and after some
more chemo to get
back into remission made the decision to come to the
Hutch here in Seattle.
Her transplant is scheduled for next
month but she
had some bad news last week, with some evidence of leukaemia
showing up in her spinal fluid. It is such a blow and
reminiscent of what Graham and I went through in April of this year.
Just when you get here and are ready to go, the plan changes….
Michelle, you can do it and you are in the right place to get it
done!!
15th October 2008
Day +70
All is well. Graham is still at home but has been into the clinic
twice this week for the last doses of Infliximab and Mesenchymal
Stem Cells.
He is back on oral clear fluids and IV nutrition (ie;
he isn’t allowed any food) for a few more days so they can see what
effect
coming
off
the
drugs
has on his diarrhea.
The poor thing is so desperate to eat but is
existing on cups of tea, watered down juice and chicken broth.
The IV nutrition
includes a bag of lipids daily as well as a bag of fluids and nutrients,
so he is getting the correct amount of calories and is even putting
on weight but it just doesn’t sate the appetite nor replace the
need to taste some food.
As you can see to the right, Alastair and Sam
Mitchell popped into the clinic to see Graham on Tuesday,
before they left for Chicago to meet with the some of the coaches
and players
from the Bears.
They
came bearing gifts and Graham just had to change into the premiership
t-shirt for this photo-op, even though he was getting his last dose
of Infliximab at the time.
We had a clinic appointment today and they are cautiously talking
about getting us out of here earlier than the 100 days!
Don’t want to jinx it so more later….
13th October 2008
Day +68
Graham finally got out of hospital last Thursday night after being
delayed by increasing diarrhea. He has lost a lot of weight (he is
down to 59kg from his original weight of around 70kg) and is still
on IV nutrition while we introduce small amounts of food to see what
is going to be absorbed by his gut. He is feeling hungry which is a
great sign but is being tortured by the many ads for fast food on
the TV here.
The kids are very excited about Halloween and have their costumes
ready for trick or treating and we carved some pumpkin heads on the
weekend. Click on the pic on the right for some more of Poppy’s “smiley
face” and Jack’s “skull & crossbones”.
We had a lovely surprise visit from Alastair (Clarkson) on Saturday
afternoon. It was great to sit and chat and hear all the news from
home. The support and encouragement he continues to give us nothing
short of fantastic.
1st October 2008
Day +56
Well, I have happily relinquished the role of substitute writer
on Graham’s Blog and
he continues to improve each day and the Doctors are talking about
getting him out of hospital by the end of this
week.
My Mum arrived on Monday and is slowly recovering from jetlag. Thank-you
everyone who generously donated Frequent Flyer Points and Air
Miles to get her here.
And of course congratulations to Alastair and the Hawthorn Football
Club for a fantastic win on the weekend. My friend Anne-Marie emailed
after the game and said:
“The truly wonderful sunshine is the Hawks win. It is a beautiful
metaphor not lost on anyone. The underdog winning despite all odds.
It surely was a sign that Graham is going to pull through victoriously.”
I have to agree!
I think we are finally over the hump and “Day +100″ on our wall
calender is looming large……
25th September 2008
Day +50
Graham is feeling much more like himself today, which is a great
sign.
He is asking for books and magazines, reading The
Guardian online,
watching movies and listening to music for the first time since the
transplant. And this is all in the last 24 hours. This was one of
the most worrying thing for me after the transplant; seeing him lose
interest in the activities that mattered to him.
Today also marks the half-way point in his 100 days post transplant.
Everything else is looking good and if we can just get him over this
last hurdle, I know we can all return to Australia together in November.
The other exciting news is that I have managed to get access to
view the AFLFinal tomorrow through the Setanta
Sports’ Channel and
am going to set up the webcam so Graham can watch it in his hospital
bed! We are very excited and wish the Hawks all the best. We will
be cheering madly for you to win!
For those readers not from Australia, Alastair
Clarkson, pictured
above with the players is the Hawthorn Coach and stood up for us
as soon as he found out how much money we needed to raise to get
here for Graham’s treatment. I don’t want to get too soppy but he
really is a fantastic person and without his support, we would not
be here.
He has also turned around the Hawks’performance in a short amount
of time and it would be a wonderful thing if they can upset the Cats tomorrow.
Go Hawks!
Sam xx
24th September 2008
Day +49
Graham’s diarrhea slightly worsened today but the Docs think the
volume will go up and down until it fully settles down. The important
thing is that the timing is spaced out from about every 10 minutes
or so to an hour or more. He gets another dose of Mesenchymal Stem
Cells tomorrow and some more Infliximab on Friday so we think he
will continue to improve.
I thought I would include some before and after pics to show what
a toll this whole procedure has taken on Graham. The first picture
is taken on July 6th, Day 0 and the second one is taken on the Day
+46, 21st September (which was my birthday). He couldn’t even manage
a smile for me and I think that says it all. He just feels so worn
out by the whole thing but we are confident he is on the mend again
and that he will be out of hospital soon.
Thanks for your support and for the offers of air miles. We really
appreciate it. Mum is arriving n Monday as we had enough for the
one-way leg and will soon have enough to book the return leg.
Sam xx
23rd September 2008
Day +48
Happy days are here again!
Graham is a bit better today. His 24 hour diarrhea volume (yes,
they measure it) has reduced from 2,200 mls to 970mls. They don’t
know what did the trick but I think it is the combination of the
Infliximab, the Mesenchymal Stem Cells and the heartfelt messages
of support that we have received from so many people all around
the world.
He had a full body CT and MRI today so it will be great to see
that the bowel wall inflammation has reduced (the scan on Friday
showed that the lining of his gut from his stomach to his bottom
from inflamed) when we get the report tomorrow.
I have also received messages from people wanting to donate their
Air Miles to get my Mum over and we think it is going to be possible
to get her here next week by using Qantas Frequent Flyer Points
to San Francisco and United Air Miles to Seattle.
We need another 34,000 Qantas FF’s for a return flight to SFO
and another 3,000 United AM’s for the SFO - SEA return leg.
If you want to donate Qantas FF’s, you can do so by logging into
your account and donating a minimum of 5,000 (their rules) to my
account and similarly, you can do the same with United. With Qantas,
you will have to specify that I am a family member and a Qantas
employee with whom I spoke this afternoon said that you could put
me down as a Sister-in-Law would as they never check!
Please get in touch for my account details.
I will update tomorrow and hopefully I will have some good news.
We are marking off the days till we come home on a big wall calender
and Jack said “only 52 days to go” to me today!
Sam xx
22nd September 2008
Day +47
Graham had an infusion of Mesenchyaml
Stem Cells (MSC’s) today as
part of a Phase
III Clinical Trial for Steroid Refractory Acute
Graft vs. Host Disease. It is a Double Blind Study which means
neither the patient nor the Doctors know whether the MSC’s or
a Placebo are given. We were a bit concerned about this as the
MSC’s
have shown very good results and we really didn’t want the placebo!
Well, it turns out that the MSC’s have a very distinctive smell
and Graham’s room was stunk out during the infusion! So much for
the Double Blind Study - LOL!
He is much the same today but we have a very positive feeling that
he will beat this thing. All the wonderful messages of support that
have flooded in today have been very much appreciated and have given
us both a boost.
I do have another favour to ask. If anyone has any United Airline
Air Miles that they would like to donate to me so I can get my Mum
back to Seattle to help out with the kids while Graham remains so
unwell, I would be very grateful. Please drop me an email if you
can help. A friend of ours here in Seattle (and Australian by marriage),
Chris Tarling, has offered me 12,000 and we need 80,000 for a return
flight.
Thanks again for your continuing support.
Sam
21st September 2008
Day +46
Graham is no better today and in fact the diarrhea is worse.
We are very grateful that we are here in Seattle as they have many
more options available to us because of their research centre.
If the Refractory Acute GVHD can’t be controlled, it will be fatal.
He no longer has any sign of Leukaemia but unbelievably he has another
battle to fight.
It is very unexpected that he would get Grade IV (the worst) GVHD
let alone be resistant to the steroids. We are hopeful that this
new treatment will help him turn the corner but we may not know for
another couple of weeks.
He is not up to responding to your messages but he is checking his
email so if you want to send
him an email, I know he would be very grateful.
Much love and thanks.
Sam xx
20th September 2008
Day +45
Graham had his Infliximab last night and so far there has
been no change in his condition.
Thanks to Ruth and Lisa for helping out with the kids and providing
moral support.
Will update tomorrow.
19th September 2008
Day +44
Graham’s nausea and vomitting has stopped but he has developed
very bad diarrhea which is worsened today. He is now considered
to have Refractory Acute Graft Vs Host Disease of the Gut, ie;
the GVHD is not responding to the steroids.
This is a very bad position to be in so they are starting him
on a clinical trial as there is no standard form of treatment
for this condition.
Although he now has no leukaemia present, this is a very serious
situation and if he is going to respond, we should see some improvement
in the next 36 hours.
Please keep him in your thoughts and I will update tomorrow.
14th September 2008
Day +39
Unfortunately, since leaving the hospital, Graham’s nausea and vomiting
persisted and he also developed a skin rash.
It looked like he was suffering from Graft
vs. Host Disease (GVHD),
which is when the new stem cells attack fast growing cells in his
body such as the skin and gut.
This is not unexpected and a degree of GVHD is actually wanted as
it also means that there is some Graft
vs. Leukaemia (GVL) going
on which can eliminate any undetectable leukaemia cells that may
contribute to a relapse further down the track.
As you can see from the diagram to the right, any unrelated transplants
(such as Graham’s Cord Blood Transplant) have a higher risk of GVHD
but a reduced risk of relapse so the Doctors have a fine line to
walk when treating the disease as they want to eliminate the GVHD
and allow a degree of GVL.
He was re-admitted to the hospital on Friday to start back on the IV
Nutrition as he has lost a lot of weight and has been unable to
eat and they started Steroid
Treatment for the GVHD yesterday and
he should be feeling better soon. Once the GVHD is under control,
they will taper off the steroids and watch for any flare ups.
It is disappointing to have this setback and the whole process is
much more difficult than either of us had imagined but he is heading
in the right direction and we are focused on getting home in November.
5th September 2008
Day +30
Graham had his Day +28 Bone
Marrow Biopsy on Wednesday and we got
the results today.
It was also the first day that his RBC and Platelets have increased
without infusions so all is looking good.
He is still suffering a bit with nausea and fatigue but they are
switching one of
his anti-viral drugs for another today
as it has been wasting his minerals but he couldn’t use the new one
till his white count had recovered. So hopefully once his magnesium, phosphate and potassium levels are all normal again, he won’t feel
so tired.
He is also coming off a drug used to combat Graft
vs Host Disease (when the new immune system attacks rapidly dividing parts of his
body such as his skin and gut lining) as he only has a minor rash
and this drug may be causing his nausea.
The pictures to the right are of Zozobra and were sent
to me today by our friends Penny, Daniel, Fiona and Ciara in Santa
Fe.
Penny says “Last night we kicked off the Santa
Fe Fiesta with the burning of Zozobra. In the 1920’s an artist started this
tradition
of burning Zozobra, or Old Man Gloom, who is burned in effigy to
symbolically dispel the hardships and troubles of the past year.
Zozobra is a 60+ foot high marionette (largest in the world).
Daniel has been involved in building Zozobra since he was small
and now
we take the girls along to stuff him with shredded paper and to paint
him. On the night fire dancers taunt him while he throws his arms
around and growls until finally the fire dancer “wins” and
sets him alight. For years it has been a tradition to put “gloom
notes” into the stuffing of Zozobra, when burned, the hardship/sorrow
that is in the gloom note is gone. So, this year we put a gloom note
in about Graham’s long tough fight, to send wishes that this
will be over soon and you can all return home together as a family
and to send our love and very best wishes to all of you.”
What a wonderful sentiment. Thanks guys.
29th August 2008
Day +23
Graham was discharged from the hospital this
evening.
The kids arrived on Wednesday with my Mum and they were sooo excited
to have Dad home tonight. Mum said that every time they heard the
elevator start up outside the apartment door, they kept saying “It’s
them, it’s them!”
And eventually it was us (after we collected the cache of drugs
from the Pharmacy that he needs to take each day) and Dad was swamped
in hugs and kisses.
Graham is still feeling nauseous and tired but is much improved
and most importantly he is officially engrafted with an Absolute
Neutrophil Count of 3,200! He reached the 500 milestone
a few days ago and is now well within normal limits.
So the worst is over and now he just has to regain his strength
while being very careful for the next 12 months.
He has lost all the immunity he gathered over his lifetime and
as a result is very susceptible to bugs that would have not been
a problem in his pre-transplant life. He can’t be anywhere there
is a crowd of people he doesn’t know as they may be carrying germs
that could at best really set back his recovery if he was to come
in contact with them.
In 12 months’ time he will then get all his
childhood immunisation shots again. He can’t get them before
then as his fledgling immune system couldn’t cope with the live
vaccines
until
it has this amount of time to establish itself.
Jack has requested pancakes for breakfast
tomorrow morning as a celebration!
I told him that was a wonderful
idea.
25th August 2008
Day +18
Graham’s Neutrophils have
been bouncing up and down since they increased to 60 a week ago.
They were at 80 yesterday and thankfully today
they have tripled to 240. We are hoping this is the sign that
they will now really take off.
He is still really fatigued and nauseous and what I would describe
as suffering from “shell-shock“.
I figure that he has been through so much what with arriving and
expecting to have the transplant, to finding out he had relapsed,
to the chemo
not working, given 2 months to live and then finding out that the
chemo had actually worked and getting the transplant; he just needs
some time to process everything.
All is well and hopefully he will be out of hospital before my Mum
and the kids arrive on Wednesday.
We can’t wait to see them.
17th August 2008
Day +11
Well those Neutrolphils have kicked in with a grand total of 60
today!
Graham needs 500 to be considered officially engrafted, so he is
on his way.
The nausea is subsiding somewhat but he still can’t eat anything
and even me suggesting different types of food made him feel sick.
Not much else to report but just wanted to let you know the stem
cells are doing their job and his neutrophils should should continue
to rise this week.
Will keep you posted.
In the meantime have
a look at what the wonderful scientists at
the SVI have discovered!
16th August 2008
Day +10
Unfortunately, that rise in the WBC on Day +6 didn’t persist and
Graham is still waiting for his neutrophils to come in.
I have just
posted over on his blog (as he is unable to do so) so I won’t repeat
myself here. Click
here to have a look.
A couple of thank-you’s while we wait patiently for those neutrophils:
Firstly to Louise Purton, Carl Walkley and all the staff at The
St Vincent’s Institute in Melbourne. The SVI is an independent
medical research institute which conducts laboratory research into
the cause, prevention and treatment of high-impact diseases such
as cancer, diabetes, obesity, bone diseases, Alzheimer’s, cardiovascular
disease and infectious diseases. SVI is affiliated with St. Vincent’s
Hospital and the University of Melbourne.
Louise used to work at The
Fred Hutchison Centre here in Seattle
and is good friends with Carrie Stein who worked on expanding Graham’s
cord blood cells (and gave Jack and I her basketball tickets!).
Louise got in touch to say the SVI staff were having a morning
tea for Graham
and
that
she
and
Carl
would
like
to donate
their Air
Miles with United Airlines to us. The morning tea raised $328.00 and
Louise has booked my Mum and the kids to come over and see us at
the end of the month. Every turn on this journey brings us in contact
with the most amazing and generous souls.
The second thank-you goes to Janine Mitchell who not only has taken
our Jack in as her 2nd son while we have been here in Seattle but
she has been baking yo-yo’s every week since we left and selling
them at St Leonard’s and Mentone Girls’ Grammar. She has been forced
into an early retirement due to shoulder surgery but has emailed
to say that the Middle and Upper school staff at St Leonard’s
and Junior school staff at Mentone Girls Grammar raised $721.00
for our fund.
Thanks again Janine and of course to everyone who dug deep to enjoy
the sweet treats.
12th August 2008
Day +6
Graham is feeling better today and they have identified the cause
of the 41 degree temperature. Another nasty gram
negative bacteria.
He is on the right antibiotics for this and hasn’t had a temperature
since which is good news. He continues to feel nauseous and is still
unable to eat.
He is also very tired and is spending a lot of time sleeping. His
hair started to come out in big clumps today so we had one of the nurses
shave it all off.
They also managed to unhook him from his life-sustaining
pole for
an hour today so he could have a shower, shave and get new sheets.
I left him sleeping to go to the supermarket this afternoon and
on the way there I got a phonecall from Dr Delaney saying that there
were 150 White
Blood Cells in a sample taken a couple of hours before to check
his platelets after an infusion. They have been at zero for the last
4 days.
This is very good news and another sample will be taken at midnight
tonight and we will have a differential (ie; types
of White Blood Cells present) tomorrow
so hopefully we will see some neutrophils.
Once the neutrophils kick in, they will begin to repair his gut
and he will start to feel better very quickly.
Where have all my curls gone?
10th August 2008
Day +4
Graham had a bad day today. He is really suffering with nausea and
vomitting. He can’t seem to move at all without being sick. He isn’t
able to eat anything either so he is now hooked up to IV
Nutrition until he can eat again.
It was very distressing for him but they gave him some pethidine which
stopped the rigors almost straight away.
The temp persisted so
they have put him on a number of antibiotics to
cover him for all types of bacteria that may be present in his
blood until
they get the cultures
back from his blood and then they can taper
some of them off.
The pethidine did confuse him somewhat and he was telling me about
how busy it had been at the Xmas party! Not sure what year!
I am hoping his neutrophils will start to come in soon so that this
may be as bad as it gets for him.
More soon….
7th August 2008
Day +1
All is well today and apart from some nausea and fatigue, Graham
is suffering no ill-effects of his transplant yesterday.
I am also very pleased to be able to annouce that the Charity
Auction Dinner held on Sat 26th July was a huge success
thanks to the wonderful
efforts
of St Leonard’s College and the
organising comittee.
This small team of Year 1 parents packed a powerful
punch:
The total amount raised came to a massive $116,090.00!!!
By all accounts it was a fantastic evening and I have received many
emails from people saying that there was a very strong sense of community
present on the night. We are so very grateful and it truly was
a team effort.
Thank-you to everyone who attended the evening, those who donated
items for the auction and of course those very generous people who
sucessfully bid on the night!
Click on the pic of James
Bateman and Hamish
Blake doing their stuff
for more of the glamourous crowd.
Thank-you everyone for such a fantastic effort.
6th August 2008
Day
0
Well, a big day today!
A quick description of events before you
watch the videos:
Graham had the unmanipulated
stem cells at 10:39am this morning and they were infused over 20 minutes.
Then 4 hours later, the wonderful and very clever Dr Colleen Delaney
hand delivered the expanded
stem cells straight from the lab and
they were infused at 3:25pm again over
20
minutes.
Graham was given benadryl and ativan as pre-meds prior to the first infusion to combat any
reaction (notably nausea) to the preserving agent used on the cells,
so he was quite drowsy but was a bit perkier for the second infusion.
Please click on the links to the right to witness this momentous
occasion!
Thank-you to everyone involved in getting Graham to transplant.
And to Anna for the balloons today!
We wait now for the baby stem cells to migrate to the marrow and
start producing blood cells. Most importantly, when his Neutrophil
count reaches 500 for three consecutive days, Graham will have officially
engrafted and can be discharged from the hospital.
The subsequent 3 months
is critical to the long-term success of the graft and
I
will
continue
to update
along
our journey.
Part 1
Part 2
5th August 2008
Day -1
Anna, who has the same AML as Graham (t(6;9) + FLT3) and has kindly
been looking out for us with gift packs and delivering Indian food
to us at the hospital is pictured right with Graham earlier in the
year. She has just emailed me to say
she sent
out
a request
to
all her friends and family here in the USA in support of our fundraising.
Thanks Anna, we really appreciate your concern for us.
Well it’s almost Day 0 and Graham’s new birthday!
Thank-you to everyone for your love and support over these very
difficult 3 months. We finally made it!!
Stay tuned for a video of the big event….
4th August 2008
Day -2
Sleeping, sleeping, sleeping was all Graham could manage yesterday
but is feeling much better today.
It’s his 2nd last day of the total body irradiation and transplant
day is coming around very quickly.
His red blood cells dropped to a level where he needed his first
transfusion today.
All is going well and on track. Not long to go now…
3rd August 2008
Day -3
Graham has had his 3rd dose of radiotherapy this morning and as
soon as he got back to his room, he started vomitting again. It really
is powerful stuff.
The picture to the right is Graham waiting for his afternoon dose
of radiation yesterday and he was keeping the mood Australian….The
sound track he chose while he was sitting on his bicycle seat being
irradiated for 40 minutes was “The
Church”. Click on the image for more pics.
More later…
2nd August 2008
Day -4
Graham had his first dose of radiotherapy today.
The Nurses had
him up at 6am for fluids and anti-nausea drugs in time for the
radiotherapy
at 8am. So he’s feeling quite exhausted at the moment and is having
a sleep.
He has another dose of radiotherapy scheduled for 2 p.m.
and then the same again to the next three days.
Yesterday, some
volunteers at the hospital came and gave Graham a hand-knitted
rug, which
you can see on his bed. it certainly brightens up the room and
I thought it was a lovely gesture.
Graham is losing his appetite more and more each day as a result
of the chemotherapy and radiotherapy and I expect he will be absolutely
exhausted by
the time he receives
his stem cells on Wednesday.
Dr Delaney e-mailed me on Friday to say that the stem cells are
growing nicely in the lab, so it will be exciting to learn how
many cells he has infusion next week.
30th July 2008
Day -6
Graham has been sufferig a bit today with nausea and vomitting from
the Cytoxan but
they have added some extra anti-nausea drugs which seem to be working
well.
Graham is very excited that today may be his last ever day of chemotherapy!
A quick thanks to everyone on the Blue Team at the SCCA for their
dedication and care in getting Graham into remission.
Dr’s Claudia
Astigarraga & Hans-Peter Kiem are pictured right with Graham
just before he started conditioning this week.
30th July 2008
Day -7
A quick thank-you to Marc and Harry Simpson for shaving their heads
to raise money for Graham. They raised an amazing $800 US.
The lovely Tracey (pictured right with her big Bro on a night out
in Seattle) kindly hand delivered the cash last Thursday.
It is now very quiet here with Graham in hospital for his conditioning
and Tracey back in the UK.
He will get another dose of the two drugs tomorrow, a rest day on
Friday and then two doses of Total
Body Irradiation on Saturday, Sunday, Monday and Tuesday with
the infusion of the Umbilical
Cord Blood Stem Cells on Wednesday
7th August -
Day 0 and his re-birthday!
He is feeling well and I will update tomorrow.
28th July 2008
Day -9
Today we went to the labs with Dr Delaney to see where the New York
Umbilical Cord Blood Stem Cells are being expanded.
Click to the right
for more pictures.
The cells began their expansion on Monday 21st
July and they are growing well.
Graham starts his conditioning
tomorrow (chemotherapy and radiotherapy) and I will let you know
how he gets
on in the next few days.
20th July 2008
Laury’s Soup Kitchen
Our beautiful friends Laury, Michele, Megan, Gail and Tracy had
a fundraising soup kitchen last week at Todd and Laury’s home in
Wollongong
and in conjunction with a jewellery stand run by the kids, they raised
$1,000! Thanks so much guys. We love you !!!
Click below and to the right for pics and video…..
18th July 2008
Well, he did it!! There is no sign of the Leukaemia by flow or morphology and Graham is in complete
remission. The pnuemonia is under control
and it is full steam ahead.
The cords were ordered straight away. One is from New York and one
is from Australia. The New York cord arrived today and the Australian
one will arrive on
Saturday.
The
NY cord
is the
one
that
is going
to
be expanded
and Dr
Delaney and her team are coming into the lab on Sunday to get eveything
ready for it to be thawed, the stem cells extracted and then expanded.
Graham has been having his workup tests and he will be admitted
to the hospital on the 30th July to start his conditioning and
have the transplant on the 6th August.
We are ecstatic that Graham is now in the best possible position
for the transplant.
Thank-you all for your continuing support throughout this roller-coaster
ride!!
Long time no post again… I am sorry but things seem to change
so quickly here, we don’t know if we are up or down. I will try and
sum up what has been happening over the last few weeks.
Graham’s fungal
pneumonia is responding to treatment and is stable
at the moment. They will do another CT in a week or so to check on
it but his cough has gone and he doesn’t feel like his chest is so
heavy any more which is positive.
On the weekend we had to go into the hospital on
Saturday and Sunday nights as he had a temperature and the blood
cultures revealed that
he had a very dangerous and highly resistant gram
negative bacterial
infection. It was very lucky that his neutrophil counts
had recovered enough
to
fight
off
the infection (see picture on the right) as it can be fatal in immunosupressed
patients. He is now on an IV
antibiotic that the bacteria is senistive
to and it seems under control.
He had another Bone Marrow Biopsy on Monday and and we received
the results today. It shows there has been “a marked improvement
in the overall degree of myelopoiesis. However there still appears
to
be an
increase of monocytic forms, which vary in distribution ranging from
5-10% in different fields.”
This means that the normal bone
marrow is recovering well and looks much healthier but there is a
persistence of the leukaemia. The pathologist who read the slides
said that this
was an improvement on the last biopsy and the overall value is just
above 5%. This is still too high for Graham to be eligble for the expansion
trial so he is going to have another biopsy next Monday to see
if the disease has reduced even further making him eligble.
We are so grateful for this second chance at getting to transplant.
Just a few weeks ago we were at 25% and preparing for the worst. Graham’s
doctors today said that it is very unusual to have such a late response
to
chemotherapy but they don’t mind unusual if it is good! We don’t mind
either. As long as we can get to transplant and beat this disease once
and for all, we are happy to take the scenic route. Although of course,
the scenic route does cost a bit more!
Jack has returned to Melbourne and is having a great time staying
with his friend Mitchell. My Mum is heading back to Melbourne on
the weekend with Poppy in preparation for the beginning of Term 3.
I think she is well and truly over having to look after a 3 year
old, particularly when said 3 year old decides to start the car and
drive it down the driveway and into the rose arbor!!!
I haven’t updated about Graham’s Bone Marrow Results since Jack
arrived as it has been a bit of a bumpy ride to say the least.
The chemotherapy clinical trial (Clofarobine & AraC)
that Graham was on required him to have a Bone Marrow Biopsy on day
14 which is very early and not usually done. We expected his marrow
to be completely empty of both normal cells and leukaemic blast cells
but it showed 9% blasts on Flow
Cytometry and 17% blasts on Morphology.
This was disappointing but another biopsy was scheduled for day 21
and it was hoped that it may give a better picture.
The day 21 biopsy
was taken last Friday and the inital result (Flow Cytometry) was
a promising 7%. The morphology results came back on Sunday at 25% which
is a huge discrepancy. Usually the flow cytometry is the more accurate
test and morphology is either the same or lower than flow. The lab
Doctors went back to look at both results and agreed that the correct
reading
was 25%. As you can imagine, we were very disappointed.
Even though they felt sure this was the correct result, they scheduled
another biopsy for this Wednesday to make sure. We met with our Doctors
straight after the biopsy as they had presented Graham’s case to the
whole faculty that morning and they wanted to tell us what the feeling
was about what to do next.
The consensus was that Graham wasn’t a suitable
candidiate for a transplant because he still has fungal pneumonia
and that the tumour burden was so high that he would almost certainly
relapse. They offered him more chemotherapy but weren’t hopeful.
You can imagine how we felt. It was a very upsetting day today.
However, around lunch-time, I got a call saying that Graham’s Doctor
wanted to meet with us at at 4:30pm. Expecting the worst (ie;
that
the BMB
from
yesterday
showed increased blasts), we went along.
Well, Dr Riddell comes in and says the flow cytometry
from yesterday’s biopsy shows 3% blasts and the morphology shows
btw 6.5 - 10% blasts. So the clofarobine must be having a late effect.
We were completely shellshocked.
Anyway, as a result things look much more promising.
Graham is going to have a CT scan tomorrow to see if the pneumonia
is under control. If it is at least stable, then they want him to
have another round of chemo with VP-16 to
try and get him into a true remission and to give him more time to
get over the pneumonia before the SCT.
We are so pleased but emotionally exhausted…
27th June 2008
Click on the photo on the right to see what Poppy has been getting
up to with her cousins while staying at Nanny’s
farm at Lake
Cargelligo.
We are really missing her but she is having a great time with Samuel,
Alice and Joanna, although I think she may be leading them astray
somewhat!
17th June 2008
Georgia Neill of Melbourne, contacted me a couple of weeks ago to
say:
“Hi Samantha, I recently saw the billboard
for “a
donor for Grahram” while
stuck in traffic at the intersection of Station St and Canterbury
Rd, unfortunately its now been replaced with a lovely “crisp,
refreshing, white wine” Lindemanns Early Harvest none the
less!! However, I found myself Googling you all, a week later and
devastated
by your plight, and your heartbreaking trek to the US, with kids
here in Melbourne. So I’m now going to run a fundraiser event,
I’m thinking like a Biggest Morning tea or Girls Night In
or something. Once its all done, I’ll let you know how it
went and do the direct debit. Good Luck with Clorarabine. Wishing
Graham all the very best.”
Well, she is a woman of her word and she has organised “Upwey’s
Biggest Afternoon Tea” on Saturday 28th June. Click on the image
on the right for more info.
Many thanks Georgia.
15th June 2008
Graham has finished his chemotherapy and he has been in and out
of hospital with infections that they are controlling with IV antibiotics.
We should have some results this week about whether the treatment
has put him into remission, so it is an agonising wait.
The most exciting thing this week was the arrival of our Jack! Thanks
to Barbara, Mark, Hana & Maya for escorting him to LAX.
We have been
having such a great time with him, including going to a Seattle
Storm Game (thanks to Carrie Stein at The
Hutch) where we met Lauren
Jackson after the game and she signed Jack’s Basketball!
Click on the photo to the right to see some more
pics.
I will update again once we know about the bone marrow results…
30th May 2008
Graham had his bone marrow biopsy
yesterday to see if the chemotherapy had put him into remission.
We got the results today and unfortunately instead of the number
of blasts decreasing, they have increased from 4% to 15%. This means
his disease is refractory to the chemotherapy drugs used.
This was extremely disappointing news to say the least.
Graham now is going to have a new chemotherapy drug (clofarabine)
to try and get him into remission.
The drug is being used in a clinical trial to treat adults with
AML and it has shown very promising results.
Chris & Mike Tarling invited us to their wonderful house for a late
Memorial Day BBQ on Tuesday afternoon. Chris met Mike in Temora, NSW
while on a 12 month teacher exchange from Seattle.
Can you belive this view? Click on the photo to the right for some
more pics.
Thanks for a lovely afternoon..it was such a great break. Chris
and I even went kyaking on the lake - heaven!
26th May 2008
Graham was admitted to the University
Washington Medical Centre (dubbed the “Husky Hilton” because
of it’s proximity to the Husky Stadium) on Friday as he had a temperature
of 39 degrees which indicated he
had an
infection
somewhere.
This
is a dangerous situation for anyone without an immune system
to be in.
So…
They cultured some blood and found the
bug that was causing the trouble and put him on the appropriate
antibiotics.
All is now well and his neutrophils are on the rise
so we may at last be ready
to start planning for the transplant this week.
He is being discharged today and we will know more later this week
but in the meantime, click on the photos on the right to have a look
at the amazing views from his room.
23rd May 2008
Happy 7th Birthday to our beautiful boy!
We are so sad we are missing
your Birthday this year but we are so proud of how brave you are
being while Mummy and Daddy are in America.
You have grown into funny, clever, loving and wonderful boy. It
just seems like yesterday that Daddy and I brought you home on that
hot summer’s day in London back in 2001.
How time flies!
22nd May 2008
Thanks to everyone who organised & attended “A Gig for Graham” in
Graham’s hometown of Bedford in the UK.
It turned out to be a wonderful night by all accounts with lots
of people meeting up for the first time in years.
And thanks to your efforts, we have another $6,600 in the fund!
Thank-you so much.
20th May 2008
Today we had coffee with Anna who is recovering from a recent transplant.
Anna also had t(6;9) with FLT3+AML,
so you are looking at two very “special” people!
Anna has a great attitude and it was great to sit and chat today.
And on Sunday we sat in Ruth and Louis’ Mercer
Island garden for relaxing BBQ.
Have a look at the video on the left…
17th May 2008
Lynne Horvat, pictured right, was diagnosed with AML at The
Alfred on the same day as Graham, Friday 13th April
2007.
As a result, she and Graham formed a bond
and always asked after one another whenever they were on 7
East during 2007.
In January this year when Graham was undergoing
treatment for his relapse, Lynne was also on 7 East to investigate
her dropping blood counts after a transplant in Oct 2007. She emailed
Graham after our appearance on ACA and was making decisions about
what treatment to
have next.
After arriving in Seattle, Lynne’s daughter Kate emailed
us to say that she had developed pneumonia and lost her battle
on Friday 2nd May.
We are so saddened by Lynne’s death and extend our sympathy
to all of her family.
They had a “Week for Graham” last week
which raised over $1,500.
Thank-you so much. What a
wonderful example you all are for the younger students at the school.
We are continually humbled by the support by everyone involved
with the kids’
school.
The photos to the right are of the Year 11 Committee Students selling
cakes and bikkies during the week.
A big thanks must also go to Janine Mitchell
for her unending supply of home-made yo-yo’s to the fundraising
effort!
14th May 2008
Here is a little
video following a typical day in Graham’s life at the moment.
Most
importantly, he has finished
the week of chemotherapy and
he is now neutropenic which
is the aim of the chemo. This means that his white
blood cells (specifically his neutrophils)
are at zero and now we have to wait for them to recover.
While
waiting for them to recover,
he essentially has no immune system so we have to be
very careful about him getting an infection of any sort.
Hopefully
his marrow should start producing in the next two weeks and
then he will have another bone marrow biopsy
to make sure there is no or minimal leukaemia and then on
to the transplant!
13th May 2008
The Quireboys are
at it again! There is a benefit gig at the Hard Rick Cafe in London
on Thursday night as part of their new album release.
Get along if you find yourself in the Capital.
Thanks once again guys.
11th May 2008
Since sending out the thank-you email yesterday, I have had a lot
of emails saying we are in fact the heroes but the reality is that
we
could never
have done this without the amazing support from you all these last
weeks.
I also received an email from Kerry, the wife of the Crown Prosecuter
Alex Clout, who died in a tragic
accident while camping at Barrington
Tops National Park In NSW
a couple of weeks ago.
He donated to our fund on the 8th April, just two weeks before his
death and Kerry said to me in her email “I want you to know that
Alex was a generous and compassionate man and I am glad our small contribution
helped.”
We are indeed grateful for his generosity and we extend our deepest
sympathy to Kerry and all her family at this most difficult time.
10th May 2008
I have just sent out an email to all our wonderful heroes to thank-them
for their support and to give an update on our journey here in Seattle.
I only have the email addresses of people who donated via PayPal.
So for others who donated via a Bank Transfer or by Cheque, please click
here to read the message which goes out to everyone who has
supported
us.
Without you, this would not be our reality.
9th May 2008
My Mum filled in for me at the Mother’s Day Breakfast with the kids
on Friday at school..
I was so sad I missed it. When I spoke to Jack on Thursday, he asked
me if I would be home in time for Mother’s Day Breakfast next year!!
I assured him that we would be home much sooner than that!
9th May 2008
This was in the Herald Sun on Tuesday in the Sports section….
Graham has started treatment today and we are recording
his journey via video.
Watch our first movie on the left and Click
here to see his YouTube channel. Keep an eye on this for updates.
He received one dose of chemo injected over 10 minutes
and then the rest is delivered 24 hours a day for the next 5 days
via a
pump that is attached to his Hickman
Line.
This means he can stay out of hospital unless he
develops an infection and can just be seen daily as an outpatient
to make sure
everything is fine.
As an interesting aside, Dr Hickman still works at
the SCCA inserting
the lines that he developed in the 1970’s!
All good but a slight change of plans. As you know
they did a biopsy a week ago to see if Graham was still in remision
(< 5%
blasts) before transplant and the reading came back 1.7%.
So on Friday they did another one to see how fast the disease was
growing and that biopsy showed 4.2% blasts so the number more than
doubled in a week. Graham was technically still eligible for the
transplant but we wouldn’t have time to wait for the expansion technique
as they have to have a week to grow the cells in the lab.
So the choice now was start on the standard double cord transplant
(no expansion) or have a dose of chemo to knock back the blasts and
proceed to the expansion transplant.
We have decided to have the chemo this week because there is some
evidence to say that if you proceed to transplant with some leukaemia
present there is an increased risk of relapse post transplant and
we really want to do the expansion protocol as they are having such
good results with less side effects.
Potentially increases our time here but we want to do the job properly!
Graham with Dr Colleen Delaney who is responsible for the research
and development of the ex-vivo
expansion technique.
They will be heading there early and rattling
some tins at the fans
before they head in.
The Herald Sun did a story in their Friday Paper about the fundraising
efforts.
29th April 2008
Results are in!
Graham is technically
in remission (less than 5% leukaemic cells in the marrow) but
there are 1-2% cells showing up so we got here by the skin of our
teeth!
Treatment can start as planned but they may give him some low
dose chemo as an outpatient to keep the nasties at bay while they
are getting
the cords ready.
More later…..
28th April 2008
Ritchies’ Community Benefit Card Program donates a percentage of
the money spent by their customers to their nominated club, school
or charity.
If you shop at Ritchies, you can now nominate “a donor for graham” as
your charity.
We made it to Seattle on Tuesday and we are so pleased to be here.
It was heartwrenching of course to leave the kids but we are so focused
on beating this thing and just know we are in the right place for
that to happen.
The staff at The
Hospital are just fantastic. Graham had a Bone Marrow Biopsy
on Friday and we will get the results tommorrow. If he is still in
remission
then we can proceed….
Thank-you to everyone for your support. Without you all, we would
never have made it here.
The fundraising is continuing whilst we are here as we had to borrow
some money to put with the amount raised to get the treatment started.
Click on the image
to the left to watch the story about
us leaving for Seattle that aired on A
Current Affair on Channel
9 on Tuesday.
Thanks to Elise and
all the team at ACA for doing a such a great job once again.
18th April 2008
Last weekend, my brother Damian got hitched to the lovely Jenny.
What a beautiful and happy bride she was…and it was a wonderful
evening by the beach in Wollongong.
I just want to thank Damian for starting off the fundraising campaign
a few weeks back because his email was
the impetus we all needed to get things going to raise the money needed
to start Graham’s treatment in Seattle.
17th April 2008
Update on the London Benefit Gig
Thanks to Mark, Ed, Helen,
Iain, Jeff, everyone else who was involved with organising the
gig and all those who went along last Thursday. We now have another
$US2,000 in
the fund!
By all accounts it was a great night and we would
have loved to be there with you.
17th April 2008
ITV in the UK did a feature on Graham in their Anglia News. Here is
the clip.
Click on the image to the right for a pdf flyer about the disco.
Get along if you can, it is great fun. Graham took Poppy a couple
of weekends ago and she grooved the afternoon away!
16th April 2008
The McMillan House Disco, Art Auction and Year 1 Art Raffle was
a HUGE success raising $22,100! Thank-you to everyone involved. We
are overwhelmed
at this
result.
CLICK
HERE to have a look at the fabulous artwork, the artists and the
winners.
16th April 2008
Shane
Crawford took a lie detector test on The
Footy Show last week
to raise money for our fund. With good humor, he
and The Footy Show have added $6,500 to the kitty. Thanks very much
guys!
Click on the image to the left to watch the report and thanks
so much to Carolyne &
the News Team for another great story to help us get Graham to
Seattle.
The fundraising is gathering steam and as you can see on the front
page we have raised just over $30,000. Thanks so much for all your
support. It is overwhelming and heartwarming at the same time!
Speaking of support, Mark Coles, who replaced Graham as bass player
in the band “Red Road” in 1996 has been organising a benefit
gig in London with the help of Ed Hudson, Helen Turner, Iain Black
& Jeff Braithwaite who were all in Red Road with Graham way back
when. I actually met Graham at one of their gigs in London in 1995
so it’s
wonderful
that
they
are all back together to help us out now. Thanks guys!
Details
are below. It’s sure to be a fantastic night so if you are in London
make sure you get there!
Venue
The Phoenix
37 Cavendish Square, London, W1G 0PP
(020) 7493 8003
Oxford Circus tube
Date
Thursday 10th April 2008, 7.30pm
Admission
By donation
Performing for the benefit of Graham Barnell
Bands
Chariot, Love My Crime, 3AM and The Ed Hudson Band
Penny’s Bone Marrow Donor Recruitment drive in Santa Fe was a success
yesterday.
She managed to recuit around 50 people mostly of mixed
race or ethnic minority backgrounds. And she thinks there will
be an agreement with her work (the Santa Fe Council) to continue
with
sponsoring
recruitment drives.
Well done Penny and thanks again!
18th March 2008
I just wanted to remind everyone, even though we are running the
fundraising campaign below, it is important to remember that there
are thousands of people around the world still waiting for a donor.
People of mixed race and ethnic minorities are desperately needed
on registries worldwide. Please think about becoming
a donor and encouraging others to do
so also.
Below are three people currently waiting for a donor:
Penny is running her Bone Marrow Donor Recruitment Drive in Santa
Fe, New Mexico, today. We just want to say thanks again for all your
efforts Penny and someone who is waiting for a donor may get their
match because
of
you.
11th March 2008
Graham still doesn’t have a donor and we have been told by his
doctors that he doesn’t have anymore time to wait for one. If he
is to have any chance of survival we need to make a decision about
his treatment by the end of March.
Without a donor his only chance of survival is a Double
Umbilical Cord Transplant. This is a relatively new procedure and we have
spoken to the two centres in Australia that have the most experience
(Westmead Hospital in Sydney and The Royal Melbourne Hospital in
Melbourne) about their outcomes.
Unfortunately they both only have a 30% survival rate so we have
also spoken to the Fred
Hutchison Cancer Centre in Seattle in the
USA. They have far superior outcomes at around 88% over the last
2 years.
What we now want to do is to raise the required $US 500,000 to
get him to the USA next month to start this life saving treatment.
Please click here for
more info on how you can help.
3rd March 2008
Well Graham is home! His counts tripled on Friday night so they
let him out on Saturday afternoon.
The kids were so excited to
see him. We took them to the park on Sunday and had a BBQ
tea with
friends
in the evening. Thanks for a wonderful Greek inspired meal Marianne
and Pete! It was great to have the whole family back together and
feeling
a bit
more
normal.
We are going to make the most of this week as Graham will have
a bone marrow biospy later in the week to see if the chemo has
worked and then we will have to decide what to do next based on
whether he is in remission or not.
But for now we are forgetting
about the nasty “L” word!
Poppy also had her 3rd Birthday last week and Graham was allowed
out for the day. She had a fantastic time, starting kinder and
having a party in the afternoon. I have added some photos of
her various poses and with her cards and her “big teddy” that she
so desperately wanted!
18th February 2008
Graham is still waiting for his blood counts to come back up
and is feeling quite frustrated and fed-up at the moment. The
fact that his mouth is full of sores making it very difficult
to eat and talk doesn’t help matters.
Still no donor and I have set up a facebook
page to try and
recruit more people. Please have a look
and encourage people to join up.
Penny is doing a great job organising her drive in New Mexico
and it is slated for March 18th. She will be doing some newspaper
ads, press release and radio ads as well as getting the info
out with paychecks and by email to the 700+ employees at
her work, many of whom are Native American.
12th February 2008
Graham finished this last round of chemo last week and he is feeling
good, all things considered. No fevers, no nausea and no major
weight loss, so he has really sailed through this lot compared
to the rounds last year.
Hopefully his counts will start to rise this week and he can come
home next week in time for Poppy’s 3rd Birthday and 1st day at
Kinder.
We still don’t have a donor and you may remember that Graham has
a rare genetic combination that includes genes that are prevalent
in Indiginous American Indians (North & South).
So these past
couple of weeks, we have been in touch with Penny Ellis-Green,
an ex-girlfriend of Graham’s who is now married with
2 girls and living in New Mexico in the USA, to ask if she would
help recruit Native Americans to the National Marrow Donor Program.
She has been fantastic and really has the ball rolling and will
be holding a drive at her work as well as getting the message out
to the Native American communities.
Thanks so much Penny and fingers crossed that we will find a match
for Graham.
3rd February 2008
Graham went for a routine blood test on Tuesday 29th Jan 2008
and unfortunately some of his blood levels (neutrophils and platelets)
were a bit low. His Doctor scheduled a Bone Marrow Biospy for
the next morning and told us to come and see her on Friday for
the results.
However, she rang late Wednesday afteroon to bring the appointment
forward - so we weren’t expecting good news . And it wasn’t -
Graham has 60% blasts in his BM so he went back in to The Alfred
Hospital on Friday for another induction chemo.
It is so upsetting that it has come back so quickly. It can
be such an agressive disease. Only last month, all he had was
low level molecular disease and now he has 60% blasts in his
marrow.
It was very unexpected as he was feeling fantastic and looked
the best he has since the treatment last year.
It is now imperative that we find a donor so if you have been
thinking about joing the registry - NOW is the time to do it!
15th August 2007
The Bone Marrow Recruitment Drive was a real success on Monday
night. Thank-you to all those people that took time out of their
busy schedules to come along and give some blood. We had 29 people
sign up to the register.
It will be 2 weeks till the tissue typing results are back,
so fingers crossed! It is a long shot but hopefully one of the
new potential donors may be able to help someone waiting for
a transplant.
Thank-you for your interest in the above. We are holding a Bone
Marrow Recruitment Drive with the Australian
Bone Marrow Donor Registry where you and any other people
you have recruited can come along and give a small amount of
blood to be tested.
It is going to be held in the Junior School at St
Leonard’s College, South Road, Brighton between 4pm and
7pm on Monday the 13th August. I need at least 40 people and
will be making appointments at 5 minute intervals.
What you need to do now is:
1.0 Read this -
as it explains everything you need to know about being a donor.
In particular, I should point out that you can’t just register
for Graham but you must be prepared to help anyone in the world
looking for a donor if you are a match for them.
2.0 Contact me on 0429 459 089 to say you and your siblings/friends
would like to come along and book a time with me. At this stage,
I also need your postal address so I can send the forms out ahead
of time to save time on the night.
3.0 Turn up and give some blood and maybe save a life!
Many thanks,
Sam
1st August 2007
We’ve been in the news! Have a look here and here.
28th July 2007
Well.. a donor for graham has a MySpace
page. We recently found out that the two alleles they
can’t match (DRB1*0404 and DRB1*0407) are prevalent in Indiginous
American populations. It seems that the registries worldwide
need more young males aged 18 - 40 with diverse ethnic backgrounds.
So I have been hooking up with men aged between 18 - 40 of
the above heritage here in Melbourne on MySpace and
hope to have 40 - 50 people in the next couple of weeks and
then the Blood Bank will come to us to test everyone. I will
keep you posted but in the meantime, if you are interested
in participating, please read this first.
If you have any questions, drop me
a line.
27th July 2007
Graham has donated his stem
cells this week to go in the freezer if needed
later. It was pretty straight forward but he did have to
go into The
Alfred on Wed, Thur and Fri for them to get enough cells
so he is glad it is over with now. He is back to work on
Monday so it feels like we are getting back to normal.
18th July 2007
Graham had a check-up at The Alfred today and was given the cytogenetic results
from his most recent bone
marrow biopsy. The genes are still normal which is fantastic
and means the AML is in remission
both pathologically and cytogenetically and they can safely harvest his
own stem
cells as an insurance policy against relapse.
He has also been given the all clear to think about returning
to work part-time. We are going to wait till he has donated his
stem cells next week and then once he recovered from this, our
lives may return to some normality!
13th July 2007
We saw Dr Sharon Avery at The
Alfred Hospital last Monday and she said there was still
no news on a possible donor. We discussed planning for an autologous transplant
and she booked Graham in for a stem cell collection on the
25th July, so we can use them as a back up if we can’t find
a donor.
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All the best for you, Graham and the rest of the family. I hope
