Last week Christian had some tests at the Royal Marsden - a blood test, a bone scan and a chest x-ray. The good news is that all is still clear. We had been a bit worried as he had a really nasty bug earlier this month with a very high temperature, and an upset stomach, so it was a real relief when the results came back. Both Henry and Christian had their last day at Eaton House the Manor this week and are looking forward to starting at The New Beacon in Sevenoaks after Easter.
4th January 2008
Claudia took Christian into the Marsden for his 3 monthly check up today. He had a chest x-ray, a leg x-ray, and an abdominal ultrasound. The chest and tummy are fine and we should get the result of the leg x-ray in a couple of days. The leg x-ray was done at the last moment, more as a marker than because there is any sign of a problem
Christian has been on good form recently, he is enjoying school and had a great Christmas. There are a few photos here.
I have recently heard from Sean Bonnington from St George's with some good news, the details are here and here. We are obviously over the moon that the funds raised have been so effective and are very grateful for all of you who so kindly donated, ran, or in many cases, did both. If anybody is considering a sponsored event I would appreciate it if you would consider the Christian Blandford fund at St George's as a beneficiary, please contact me for details.
By the way Christian goes to the Royal Marsden in Sutton, not the one in Chelsea which was so sadly damaged by fire this week.
Happy New Year!
28th September 2007
Last week Christian had a bone scan and a CT scan and the results came back today, he is clear of cancer!
We've got a long way to go and he is still in danger from the treatment, his kidney function, for example, is still not what it should be, but we are obviously very relieved.
Monday 30th July 2007(From Claudia)
We have just returned from a glorious two weeks at Villa Begur! After a rocky start with Christian not sleeping due to a bad cough I was pleased that we had taken some precautionary antibiotics with us and once they kicked in he was much better. Then we ended up in the local hospitals A&E – nothing serious but a bit of a bummer nonetheless and very unfair on Christian. However, after that all was perfect and we spent the rest of the holiday soaking up the sun (and wine!) and enjoying ourselves with the various different friends and family who came to join us. Even leaving wasn’t too bad since we will be heading back to the villa in another 4 weeks for the last week of the school hols. Pete has posted some photos from the holiday (here) so you can see how the boys are growing – and how much hair Christian has now (and how little hair Pete has now!).
Both Peter and I wanted to thank some of you who really have done an amazing effort in the fundraising:
All of those who ran the 10km and raised money. There were some amazing achievements, Jo Winnick, for example, raised a staggering £5000 and ran the 10k in a very impressive time!
Monika Kurec who is an incredibly fit friend of mine. She did some mad long (incredibly long!) bike ride in Cape Town South Africa and raised a HUGE amount of money for Christian’s fund. Here is a photo of her during the race and an extract from the email that she sent upon completing it:
Well I made it! 4 hrs 4 mins (30 mins faster than expected!)
It was, by far, the most amazing experience of my life and I'm still on a high from it!
The 2 days before temperatures soared up to an incredible Autumnal 39 degrees C!! This just added to our list of things to worry about! eg.. What if my wheels fall off? Will I make it up those hills? When do I eat? I don't want to die on those downhills! What if I need a wee? Will a baboon jump in front of me? (pretty likely) etc... Endless worries. As it turned out, beautiful clouds rolled in on the race day morning and temps dropped to a "cool" 26 degrees. We couldn't have been any luckier. 36,000 people took part and I managed to complete the whole race without a puncture, without falling off, without sunburn but with the biggest smile and Adrenalin high I've experienced. I can't recommend this event enough to everyone!
I can't thank you all enough for all the support and sponsorship. I have raised £4393.59 so far, which is just amazing.
Thanks Monika! I don’t know when you found the time to train for this, and I know that the entire trip must have been very expensive for you. You really are one of the most selfless people I know. Fi Lovett owner of Fifi Wilsons on Abbeville Road – Fi held two clothing sales with proceeds going towards Christians fund and she raised an incredible £1000. I am so grateful to all the hard work both she, and her manager Dawn, put in to the event. I know how busy they both are running two successful shops and am truly flattered that they wanted to help with Christian’s fund.
Thursday 5th July 2007
Christian had the last session of radiotherapy yesterday and had his Hickman line removed this morning. he has coped remarkably well and even managed to get to his nursery sports day earlier this week. Mark Trenowden took some photos of it for us and some of them are here together with a few of my recent snaps. We are now all looking forward to a couple of weeks in Spain at the end of July.
In case you didn't see it here is an amusing film we made last weekend...
Thursday 14th June
Christian has had his first radiotherapy today. He was not particularly impressed with the room full of Doctors and equipment and was a bit upset but, hopefully, he'll get used to it over the next three weeks. Unfortunately he doesn't like the effect of the general anesthetic and so cries when he sees the white syringe. He did, however, recover very quickly and a couple of minutes after he awoke he was tucking into a jam doughnut.
He has had a tummy ache at night for the last couple of weeks which has been waking him (and us!) up. At first we assumed it was still pain from the chemotherapy but he had some tests yesterday and he has a urinary infection. He's on oral antibiotics so that should clear it up pretty quickly but we are still waiting to hear back from the lab to confirm which bacteria is growing on his urine sample. Once identified they will either stick with the oral antibiotic he is on, or change it. There was talk too of sending him for an abdominal ultrasound tomorrow.
I am trying to collect the last of the sponsorship money. If you were kind enough to pledge and haven't got around to paying please pay online here. Similarly, if you ran the race and are still owed money from sponsors please send them the link and encourage them to pay online. Thank you all again for the amazing support, I have been assured by Sean Bonnington that the money raised will be vital to getting the "kids on 5" project off the ground.
Thursday 24th May - Update from Claudia
After 4 weeks and 1 day it looks like we are on our way out of here. We will be going home this afternoon! Over the last few days Christian's health has really improved. His cough is clearing up, his temperature has settled and his bloods seem to be doing everything on their own - without the aid of any transfusions or drugs. He is still very weak, but he is up and about a bit and no longer spends all day asleep in bed. In fact he is in the playroom right now with his nanny having a great time. I can't tell you how wonderful it feels to know that he is at long last pain free and drug free!
Once we get home we will have a couple of weeks to strengthen him up before he starts his radiotherapy on about 14th June. This will be daily, under a general anesthetic for three weeks. And then that's it! Hopefully no more chemotherapy or radiotherapy ever again!
I really would like to thank all of our family and friends who have been an absolute tower of strength over the last month. The food parcels that have been delivered to us either at home or the hospital really have helped tremendously and have been much appreciated. As have all the visits to us here at the hospital too. The Marsden isn't the most convenient of places to get to so a big thank you for that too! It can get quite depressing here after a while, and knowing that company was on its way (with food and wine!!) gave us something to look forward to.
Sunday 2rd June
We have been home for 10 days now and Christian is improving day by day although he is still a bit weak. We are hoping to be able to have his Hickman Line removed after radiotherapy and before we go to Spain mid July so he will be able to swim in the pool!
I have taken some new photos of the last few days here they are. It's a new format, if you can't view them please tell me and I'll sort out a different way. If you want any prints they are available here.
Thursday 24th May - Update from Claudia
After 4 weeks and 1 day it looks like we are on our way out of here. We will be going home this afternoon! Over the last few days Christian's health has really improved. His cough is clearing up, his temperature has settled and his bloods seem to be doing everything on their own - without the aid of any transfusions or drugs. He is still very weak, but he is up and about a bit and no longer spends all day asleep in bed. In fact he is in the playroom right now with his nanny having a great time. I can't tell you how wonderful it feels to know that he is at long last pain free and drug free!
Once we get home we will have a couple of weeks to strengthen him up before he starts his radiotherapy on about 14th June. This will be daily, under a general anesthetic for three weeks. And then that's it! Hopefully no more chemotherapy or radiotherapy ever again!
I really would like to thank all of our family and friends who have been an absolute tower of strength over the last month. The food parcels that have been delivered to us either at home or the hospital really have helped tremendously and have been much appreciated. As have all the visits to us here at the hospital too. The Marsden isn't the most convenient of places to get to so a big thank you for that too! It can get quite depressing here after a while, and knowing that company was on its way (with food and wine!!) gave us something to look forward to.
Saturday 19th May 2007
Christian has started to recover. His temperature has been under control and he is smiling again!
He is not eating yet but is completely off the morphine and we hope to be home within a week or so. The radiotherapy has been booked in, it starts in the middle of June and it is given Monday to Friday for 3 weeks. He will need to be given a general anesthetic each time.
They hope that the radiation will not effect the growth of the leg too much but there may be a very slight one.
Sunday 13th May 2007
As we expected it's been a tough 10 days. Christian has been on Intravenous morphine for the pain and has had bad diarrhea and vomiting. He hasn't eaten for about a week and has been on TPN which is intravenous nutrition. His Neutrophils and white blood count have been zero and as he has had a temperature he has been on antibiotic and antifunguls. The good news is that his Neutrophils have been boosted by a drug called GCSF and he can now fight infection and the mucositis should start to heal.
I'm looking forward to him laughing again, at the moment his only response to my usual nonsense is "stop it daddy, you're annoying me". And who can blame him?
Friday 4th May 2007
Christian has had his stem cell transplant. It didn't go too badly but wasn't a lot of fun, it gives him a sore tummy and nausea as it is given. Bizarrely due to the chemicals used to preserve it, it gives him a strong smell of sweet corn first and he now smells of tinned tomato soup.
He has started to go downhill and the worst of it will come in the next couple of weeks. The chemo will attack his stomach lining and he and will probably give have a very sore tummy, throat and mouth. This is called mucositis, there is not much that can be done about it apart from treating the symptoms and waiting for him to heal. He will probably end up on intravenous morphine for the pain and not be able to eat so will be on nutrition through his NG tube.
Thursday 3rd May 2007
Christian has finished all of the chemo now. He is not feeling too bad, a bit more sleepy than he has been but yesterday he ran around and played hide and seek with me taking advantage of an hour or so when he wasn't attached to a drip. Today at around midday he will have the stem cells that were harvested a few weeks ago reintroduced. Apparently it can make him feel nauseous and can induce a seizure.
He still loves playing up to a crowd. Here he is in the play room yesterday...
Update - the stem cell transplant has been delayed until tomorrow, because they have decided to give him 72 hours from the end of chemo before he gets it. He needs to be well hydrated for it but as it has been delayed he has now been taken off the drip and has run off to play room with Anna. Watch out plates, here he comes...
Saturday 28th April 2007
Christian is in pretty good spirits. He has been on pretty much around the clock chemotherapy as well and various other drugs to combat potential side effects. His NG tube went in Thursday afternoon and he pulled it out in his sleep on Thursday night so they had to put it back in yesterday morning. It was fine last night but he doesn't like the sensation he gets when medicine gets pushed down it.
He's eating well and loves playing in the play room - here he was yesterday getting dirty...
We met with Kathy Pritchard Jones, Christian's consultant yesterday. We have had various tests done this week ahead of the intensive chemo next week. All the results were as we hoped, with no spreading of the cancer to any other bones in the body. We are being admitted to the Marsden on Wednesday 25th, Christian will have a daily dose of the same two drugs that he has already taken as well as a one off intensive dose of a different one. He will need an NG tube in his nose as he will be very nauseous and will probably not want to eat or take any of the medicines that he will need, that will probably be put in on Wednesday.
We also discussed the next stage of his treatment that will be radiotherapy, he'll need a daily dose to his leg for two weeks. As he is unlikely to stay still it means that he'll need a general anesthetic each time. The effected area is not close to the growth plate of the bone but there is still a danger that it may slow down the growth in that leg.
The boys recorded a message for Favourite Auntie Danny - it is here.
Thursday 12th April
Christian is now home and feeling much better (as is Claudia). The intensive chemo is due to start on the 25th April (correction from incorrect date).
Easter Monday (and my sister Sam's Birthday)
Christian has been pretty unwell all weekend. His temperature has got up to 40.3 C, this has made him very uncomfortable and he has had vomiting and diarrhea. They are not sure if it is due to a Bacterial infection or a Virus but his CPR count has risen to 250 which, apparently, is a sign of bacterial infection. They have added a third intravenous antibiotic to help combat it.
Claudia seems to be suffering from the same bug as Christian has and to top it all off Henry did a Superman off a climbing frame and had to go for an X-Ray at A&E to make sure it wasn't fractured.
Christian seems to be getting better, his temperature is not quite so high and he's a bit happier. Wendy (Nanna) is staying with him at St George's tonight to give me a break and Bob and Marc (Claudia's dad and brother) are looking after him tomorrow while I go to work.
Christian is also getting GCSF which boosts his neutrophils so hopefully he will soon be better equipped to fight the infection.
Easter Saturday
We got home from The Royal Marsden Last Sunday evening. Christian has had a cold all week so it was inevitable that when his neutrophils came down to zero we would be back in the Hospital. He spiked a temperature this afternoon and Claudia brought him to St George's. As usual he is on first line antibiotics until they can rule out a bacterial infection. He is currently having a blood transfusion as he HB levels are also very low.
A few people have asked about how Henry is coping with all of this. So far, I reckon he's done better than any of us. We got his school report last week and amongst lots of good comments it said he's popular with his friends and his teachers and is a pleasure to teach. He also got an A++ for arithmetic and an A+ for drama where is he is a natural unless he is asked to mime...
Saturday 31st March
We are at the Royal Marsden again. Christian came in for the last dose of this round of chemo. It was the one that is given over three days with fluids so his kidney is protected. We were due home yesterday evening but unfortunately his temperature spiked and Claudia had to stay here with him overnight. He is now on antibiotics and we are waiting for his temperature to stabilise before we can bring him home. We are hoping that'll be tomorrow.
The plan is still to start the intensive chemo in the beginning of May and we will probably be here at the Marsden for the whole of May as he recovers. It's possible we may come in a week early for an intensive dose of the same chemotherapy that he's been on so far.
I have been given a long list of all the people who sponsored online, I am busily trying to reconcile that with the people who pledged sponsorship. If you did pledge and haven't sponsored yet I would appreciate it if you could pay online here and send me a copy of the payment e-mail receipt. If you would rather pay by cheque please e-mail me for details.
Friday 23rd March
We are in The Royal Marsden at the moment. Christian has had a ultra sound on his tummy and pelvis which was all clear. We have also had the results of the MRI on both legs which shows no spreading on the left leg and the right leg is clear. This is good news as he been complaining of a sore tummy and pain in both legs so we had been very worried that he hadn't responded to the chemo.
Monday 19th March
We took Christian in for an MRI scan today at the Royal Marsden. It was done under a general anesthetic as he needed to stay still for over an hour as it was done. He always finds general anesthetic a bit upsetting but has recovered well and is now in a good mood. We will get the results of the scan on Friday when we go back to see Kathy Pritchard Jones. It is an important result as we will find out if there has been any spreading of cancer since the treatment began. He has had some aches and pains recently which are, apparently, common when on chemotherapy but each one is clearly a worry.
Wednesday 14th March
Christian had his chemo last week which means there is only one dose left of this stage. After that, at the end of April, he will have the intensive chemo. We will be admitted to the Royal Marsden for it and Christian is likely to be very ill for at least two or three weeks after. It is at this stage that he will be given the stem cells that were harvested a couple of months ago. He's in quite good spirits generally at the moment but his hemoglobin levels are low which makes him feel a bit poorly and means he will probably need a transfusion by the end of the week.
The sponsorship money is coming in well, thank you very much again to all those who donated. There is a full list of donors and a link to the payment page here. Please contact me if you should be on this list and are not.
By the way there is a photo of Christian in page 96 of April's Digital Camera Magazine!
Monday 7th March
I have some photos of the run. They are here or here if you can't see flash files. I have set up a new donation page with a list of donors and total amount donated it is here.
Monday 5th March
Fortunately, we came home Saturday evening and got a good night's sleep ahead of Sunday's run. It was a fantastic event, the photographer Jonathan Cook has taken loads of photos, it will take a bit of time to process them all, there a few here. The official results are here.
If you are one of the people who have generously pledged then you can pay either by cheque to me or online here. If you meant to pledge something but didn't get around to it, it is not too late. Either way please forward the payment confirmation to me at peter@theblandfords.com.
Thursday 1st March
Christian had been given his antibiotics and a blood
transfusion and he was all ready to go home. The community
nurses would finish the course of antibiotics by visiting
us once a day at home. Claudia then noticed that the scar
on his leg were the autopsy was done was red and inflamed.
We showed the doctors who said that, as long as his temperature
didn't spike he would be allowed home as the antibiotics
would sort it out.
Right on cue, Christian started to look a bit flushed,
they took his temperature and it was 38.5. He will now
probably have to stay for 48 hours as they blitz him with
"first line" antibiotics, the one he was on
before and two others.
He is, however, in fine spirits. It's 8.45pm, he has
finally stopped chatting and is peacefully asleep.
Wednesday 28th February
Christian's Hickman line is red and sore, it is probably
infected so we have brought him to St George's. He is
in good nature but is neutrapenic and his Hemoglobin levels
are low so they have put him on antibiotics and he is
going to have a blood transfusion.
If he remains happy and doesn't spike a temperature we
hope to take him home tomorrow.
St George's have set up a credit card payment site for
the Christian Blandford fund. If you wish to sponsor or
have already pledged this is an efficient way to pay,
they only charge 3% as opposed to the 10% justgiving charge.
The page is here.
If you forward me your confirmation e-mail from the donation
I'll be able to keep tally of what we have raised and
I'll add your name to list of generous donors.
Thanks again to all those who have sponsored so far,
we are over the moon with how it's going.
Finally I'll leave you with the question, "Is the
world ready for another super-hero?"
See you Sunday
Monday 12th February
Christian came home on Thursday and has had a good weekend
at home. He's back for chemo at the Royal Marsden, this
Thursday, Friday and Saturday. It is the one that needs
him to stay in overnight for so Claudia will be in Thursday
night and I'll do Friday night.
The run is going fantastically well. I have ordered 150
T-shirts with a nice design on the back and have assumed
everybody who is running will want one. I'd like to thank Jonathan Cook for his help in designing the T-shirt. Jon has also volunteered
to come and take photographs on the day. So make sure
you're looking good as you cross the finish line...
Tuesday 6th February
We were hoping to come home today but Christian isn't
well enough. He still has a slight temperature and his
blood counts are low. He had a platelets transfusion and
had a bad reaction to it which made him itchy and uncomfortable,
He's been given piriton which seems to have worked and
is now sleeping peacefully.
I got an E-mail today from the organiser of the run and
there are only 100 places left. So if you wish to run
and have not entered yet please do so now, the entry form
is here
You can check the list of people who have entered on this
page.
Could you please tell me if you have entered and are
raising money. All the people I know about are also listed
on this page.
If you are planning on sponsoring and haven't done so
already please send me a pledge by e-mail, I'll chase
up payment out later! Again all the sponsors I know about
are listed in the yellow box on the right.
If you are not running please consider coming along on
the 4th March and cheering us all on. It should be great
fun day out.
5th February 2007
Christian has been on very good form for the last couple
of weeks. On Wednesday he even went into nursery for the
morning, they have made of photo montage for the wall
of his day in!
The last few days he has had a bit of a cold and his
temperature spiked to 38.5 on Saturday afternoon. Because
it was a week after chemo we had to assume he was neutrapenic
and took him down to St George's. One of the children
at nursery came down with Chickenpox later in the week
so Christian had to have an injection to protect him as,
even though he has already had Chickenpox, the chemo will
have killed his resistance to it.
He has probably got a viral cold which is relatively
harmless, but they have to follow protocol and treat it
as an antibacterial infection. He is on intravenous antibiotics
and they will keep him in for 48 hours while they try
and grow cultures on a blood sample. If nothing is grown
in that time and he doesn't get another temperature and
he seems well in himself, he will probably be allowed
home.
Danny, Claudia's sister, took some photos of Christian
last week while he was having his stem cell harvest. Here
is one...
Dans is off to Montenegro to turn around
the local property market. Our boys are really going to
miss her. Here she is doing what she does best, making
them laugh and spoiling them rotten...
24th January 2007
Claudia and Christian came home from the Royal Marsden
today. Christian had a stem cell harvest done yesterday
which went well, they got all they needed in one day,
not two. He had a vascath fitted, which is a special line
for the blood but that has already been removed. He is
due for chemo and will be back at the Marsden tomorrow,
Friday and Saturday as an outpatient. Once this is done
we will be half way through this stage of the treatment.
18th January 2007
Christian had a temperature on Tuesday so we have spent
the last couple of days at St. George's. It looks like
it was an infection in his leg that caused the temperature.
He has been on intravenous antibiotics which have done
the trick and has been allowed home today. He will need
to continue the course of antibiotics until next week
but, as it's a once a day dose, it can be given by the
community nurses at home.
The bone scan which was due tomorrow was brought forward
to today and he and I were taken down to the Royal Marsden
for it by ambulance. It was very exciting for both of
us...
We are seeing Kathy Pritchard Jones tomorrow to discuss
his treatment and get the results of the bone scan. Kathy
did pop into the radiology department this afternoon and
at first glance, the scans looked good with no sign of
the cancer spreading and a good reaction to the chemo
so far. Good news at last...
15th January 2007
Christian needs to have a stem cell harvest next week.
It will involve him going into The Royal Marsden for a
couple of days where he will get a new line fitted, unfortunately
the Hickman Line will not work for this. They will take
blood and draw stem cells which will then be frozen. Stem
cells are special cells that can develop into either red
cells, white cells or platelets and are normally produced
by the bone marrow. When Christian has intensive chemotherapy
in a few weeks he will not be able to produce any stem
cells and they will use what they harvest next week. He
should be in hospital for a couple of days.
At the moment he is in pretty good form and seems to
have reacted better to the last dose of chemotherapy than
the first. His mouth is getting sore which could be a
sign that he is developing mucositis, this is when the
lining of the digestive system becomes inflamed, a common
symptom of chemotherapy. His leg pains seem to have also
got more frequent recently. We have an appointment with
Kathy Pritchard Jones on Friday so we can discuss some
of these issues with her. They are trying to fit him in
for a bone scan and an x-ray for Friday too.
The line up for the 10km run is looking good. Thanks
very much to all those who have offered to sponsor so
far and those who have are joining in. Even if you are
not running please put a note in the diary and come along
and cheer everybody along. All the team will have the
same T-shirts so we should be easy to spot...
7th January 2007
Claudia here! Peter has instructed me to
write the latest update so please bare with me as I am
under a lot of pressure to live up to the usual high standards!
Christian was fine over New Year, if a bit tired and emotional
(or was that me?!). His Hickman Line is working fine now,
and after a couple of transfusions (platelet and blood)
he was fit enough to go in for his chemo at the Royal
Marsden on Tuesday January 2nd as an in patient for three
days. This all went as normal and Christian was on pretty
good form, until we went to leave on Thursday and he promptly
threw up everywhere. I was worried they might want to
keep us in, but he seemed fine after that so we were allowed
to leave. He was sick again in the night, but since then
the various anti-nausea drugs they gave us seem to have
kicked in. For now he seems in good spirits and even wolfed
down a massive plate of spaghetti with grated cheese followed
by 2 yogurts for his tea - a proud mum moment so I asked
Pete to take a photo of it!
As Pete mentioned in his e-mail he is arranging
a 10K run on Sunday 4th March in Battersea. PLEASE do
sign up for it - Even I am going to give it a go! All
money raised goes towards the "St. George's Charitable
Foundation - Christian Blandford Paediatric Fund".
I can not tell you how much we (and other families) have
benefited from the money that was raised in 2005 by all
of you. The Pinkney Ward is now so much more comfortable!
So, if like us you over indulged in too much food and
wine over Christmas get your running kit on and start
training!! Obviously no pressure, but you know our son
is ill...................
Fortunately, Christmas was fairly peaceful. We had to
visit the hospital every day in the morning to get some
GCSF but that was much better than the 3 visits a day
it looked at one point that we would be making. Christian's
hair started to fall out so we had to give him a haircut
which he was a bit upset about. It didn't seem to help
when we told him that it looked like Daddy's hair now.
I can't say I blame him. He still looks gorgeous though...
Christmas Eve 2006
We have been in and out of St. George's for the last
few days getting antibiotics for Christian. He has also
had GCSF to boost his neutrophils and a platelet transfusion
as they were very low. The last couple of nights we have
brought him home to sleep and yesterday he was home most
of the day, returning to the hospital three times for
his antibiotics. He had the last dose of that this morning
and we are waiting to see what his blood results are to
see whether he needs more GCSF.
Nanny and Granddad (June and Sandy) were here yesterday
and the boys got their presents. Henry and I have been
playing scalextrix all morning and Christian is very excited
about his pink dancing car! it could be worse Danny was
threatening me with buying him a pink fairy costume...
Merry Christmas from all of us and thank you for all
of your support over the last few weeks. It really has
made a massive difference.
Thursday 21st December
Christian and I are currently at St. George's. He got
a temperature yesterday and as he is very neutropenic
he can't fight infection. He is on antibiotics and is
happy so I am hoping we get home later today or tomorrow.
His Hickman line has become slightly dislodged so they
struggled to get blood out of it last night but they got
there in the end. He may need that replaced soon.
Wednesday 13th December
Christian responded well to the antibiotics and we are
now home. He needs another dose tomorrow and a community
nurse will come to our house to administer it.
Tuesday 12th December
We came in to the Royal Marsden today for chemo and Christian
temperature "spiked". It would seem that he
has an infection of some kind, probably viral. He has
been given intravenous antibiotics and will need to stay
overnight as the next dose is due at 1.00am. From tomorrow,
it will be due every 24 hours so we may be able to go
home.
Monday 11th December
We have just got back from the Royal Marsden. Christian
had two different Chemotherapy drugs, Etoposide and Carboplatin.
Carboplatin is given over an hour. Etoposide is also given
as an hour drip but for 3 consecutive days, so he had
it on Sunday, today and is due to go back for the last
dose tomorrow.
Yesterday he had a great day, Henry came with us and
the staff at the Royal Marsden put on a pantomime in the
afternoon which was very good. Before anybody asks, I
was not drafted in at the last moment...
He slept well last night and has been very happy until
the nausea kicked in this morning. We have a couple of
different drugs which will, hopefully keep the nausea
under control.
The next dose will come in the new year when he will
have the Etoposide again, this time he will have it with
Cyclophosphamide which has to be given overnight with
a hydrating drip.
Friday 8th December
The biopsy result finally came through today and the
growth in Christian's leg was confirmed to be a reoccurrence
of the Clear Cell Sarcoma.
We are taking him for his first Chemo on Sunday and he
will stay in overnight so they can keep an eye on him.
He may be home during the day on Monday but will have
to go back for a second drug on Tuesday. His treatment
will be every three weeks after that for 18 weeks followed
by the "high dose" chemotherapy.
His is recovering from the biopsy but is still a bit
sore and isn't walking on it yet. Other than that he has
been in very fine spirits.
Monday 4th December
We took Christian to Stanmore Orthopedic Hospital today
for another bone biopsy. It all went fine and the surgeons
are confident that they got a decent sample this time.
He is a bit sore but was allowed home. The results may
take over a week but we are (sort of) hoping they come
quicker so the treatment can begin. New
photos here.
Wednesday 29th November 2006
Christian had a Hickman Line fitted today, they also
took a sample of bone marrow from his hips for testing.
The operation went fine and he is now at home and relatively
happy, if a bit concerned about the tube going into his
chest...
The results from the Bone biopsy came back today and
unfortunately they were "inconclusive". This
means that he will need to go back in and get another
biopsy before treatment can begin, we haven't got a date
for this yet. Tomorrow we are going into the Royal Marsden
to see Cathy Pritchard Jones who is back from holiday,
she wants a couple of tests redone including the chest
and leg x-rays. He is also going to get a kidney test
(as one of the chemo drugs could effect it) and some blood
tests.
On a lighter note, Henry lost his first tooth today.
Photos to come...
Wednesday 22nd November 2006
Christian had the bone biopsy today, it all went fine
and they got a good sample. We will not get the results
until next week so the Hickman line insertion is going
to wait until then. He was in pretty good form all day,
the biopsy was quite intrusive so he'll be a bit sore
for a few days.
Friday 17th November 2006
We met with the Doctors at the Royal Marsden today to
discuss Christian's treatment. He will start his chemo
shortly after the biopsy and the fitting of the Hickman
line next week, maybe as early as Friday 24th.
His chemo will be a lot more aggressive than the last
treatment with a strong dose every three weeks for 21
weeks. At the end of this he will get a very intensive
dose which will completely wipe out his bone marrow and
he will then need a bone marrow transplant. We will have
prepared for this by taking some of his healthy bone marrow
out in a few weeks. Christian will need to be admitted
for this final dose and is likely to be in hospital and
very sick for a month or so before he recovers. After
this other treatment may be required, including radiotherapy
and/or surgery.
Christian is now strong and healthy and we are confident
he is in excellent hands, this gives us hope for the upcoming
year. Here are
some recent pictures of him.
Wednesday 15th November 2006
The good news is that the MRI scan and the CT scan results show that there has been no spreading anywhere beyond his lower left femur (knee).
In order to confirm the fact that it is a return of the clear cell sarcoma he needs to have a bone biopsy which will be done in Stanmore Hospital early next week. The results from that should take a couple of days, but they would be very surprised if it's anything else.
Christian is already booked into The Marsden next Thursday to fit a Hickman line (like the portacath he had before but with two points of access) and they will take a sample of bone marrow at that time to check if there has been any spreading there.
The exact protocol for treatment will be decided after
the results of the bone biopsy but is likely to be every
three weeks with alternate drugs. One of these will be
an outpatient treatment and the other he will have to
stay in overnight. After a series of courses (in about
18 weeks) he will be admitted for intensive chemotherapy
which will be administered as an inpatient at the Royal
Marsden over two weeks.
Claudia and I would like to thank all our friends and family for their support, it really makes a difference. I will try to keep this site updated with the technical stuff as quickly as possible.
Friday 10th November 2006
After a year of peace, Christian had a Bone Scan on Wednesday
because he has been having a sore knee. It appears that
there is a "an area of increased uptake on the Lower
Femur of the left knee". The most likely reason is
that the same cancer he had has come back in his bones.
He is booked in for a MRI on Monday and a CT scan on Tuesday,
after that they will hopefully be able to determine the
best next step.
He is likely to need a biopsy and then secondary chemotherapy.
Sorry to be the bearer of bad news....
Rent our villa, you may even get mate's rates!
Read more >
