Christian’s Story

This is the original blog we wrote to keep our family and friends informed when Christian was being treated

 

Christian was born on 19th July 2003 at 10.25am

Monday 31st January 2005

Christian had a lump in his tummy so we took him to Jake McKinnon, the pediatrician who originally diagnosed his reflux a year ago. He was immediately concerned and we took him for an ultrasound and an x-ray which seemed to confirm a Wilms tumor in the kidney. Blood and urine tests were taken. Keith Holmes is a pediatric surgeon who happened to be consulting at the same surgery on that day and he agreed that this was the most likely scenario and referred us to the Royal Marsden Hospital.

Tuesday 1st February 2005

We took him to the Marsden where we met Kathy Prichard-Jones, she is the professor of pediatric oncology and happens to run a large team of researchers who research Wilms tumors. Wilms tumors have been “curable” for 20 years or so and 90% of children apparently make a full recovery. The treatment is chemotherapy for a few weeks, followed by surgery to remove the kidney and growth followed by more chemotherapy. He would need to have a biopsy and a CT scan to confirm that it is Wilms tumor and that it hasn’t spread anywhere else (unlikely from the fact that he is acting happy).

Wednesday 2nd February 2005

Keith Holmes performs a biopsy at St. George’s and fits a portacath (a direct access to the bloodstream for drugs and removal of blood). Christian woke up a bit upset but was happy for most of the afternoon.

Thursday 3rd February 2005

Went back to St. George’s because a urine infection had been detected from Monday’s tests. Antibiotics administered intravenously and orally. Christian a bit niggly today…

Friday 4th February 2005

(Very) Good news – CT scan confirms no spreading of cancer into lungs or, in fact, anywhere else.(Slightly) Bad news – biopsy shows sign of muscle in the tissue, this means it is either a variant of Wilms tumor (fetal rhabdomyoblastic) or it is a completely different cancer (rhabdomyosarcoma). This other cancer would be treated in the same way as a Wilm’s tumor so Kathy Pritchard-Jones suggests we start on the chemotherapy straight away. It would be very unusual for rhabdomyosarcoma not to have spread out of the kidney so Kathy still feels that the Wilm’s tumor is the far more likely problem. They will do more analysis of the biopsy to help decide. Christian had his first lot of Chemotherapy at the Royal Marsden at about 5.00pm.

Tuesday 8th February 2005

10.00am – Christian is not reacting very well to the chemotherapy. One of the side effects is a sore jaw, and this seems to be making him uncomfortable when he eats and drinks. The doctors were a bit concerned so we brought him to St. George’s Hospital last night and Claudia and he stayed the night. He has been on a drip to rehydrate him and we are now waiting for more news. 10.55am – We are taking him back to the Royal Marsden for further checks.

Wednesday 9th February 2005

I stayed overnight with Christian at the Royal Marsden. The main concern is that he is not eating or drinking. In order for him not to get dehydrated he is on a drip and they are considering putting a tube down his throat so they can nutrients into him. It’s not as bad as it sounds, he’s a bit niggly, but not too uncomfortable and is sleeping well.
Claudia is going to stay there with him tonight. We are not sure how long he will stay in hospital, he will be allowed home when he is drinking on his own. He is now neutropenic (has low blood white cells) from the chemotherapy so he can not have paracetamol. He has been on Codeine and Morphine as pain killers and will hopefully not maintain a recreational taste for them.

Thursday 10th February 2005

The good news is that he has started eating and drinking, mostly chocolate and biscuits, but at least he is feeding himself. We should be able to take him home tomorrow. The less good news is that the pathologists have finished deliberating and have decided that it is, after all, not a Wilm’s tumour. They have decided that what he has is a clear cell sarcoma of the kidney. This is a lot less common than a Wilm’s tumour (about 5% of Kidney tumours).This kind of cancer is a lot more prone to spreading, we know it hasn’t spread to the lungs but now they need to check that it hasn’t spread to his brain or bones. They will need to do a bone scan, a CT head scan and take a sample of bone marrow. Kathy Pritchard-Jones feels that from his behaviour it is very unlikely that any spreading has occurred. All these test will be done next week. Assuming no spreading the prognosis is very similar to Wilm’s tumour but he will need a far longer period of treatment post operation (probably about a year of chemotherapy). They will bring the surgery forward to reduce the risk of the cancer spreading before surgery. The date currently suggested is the 23rd February 2005. He will probably need to stay at St. George’s Hospital for about a week after the operation.

Friday 11th February 2005

We are still hoping to take him home later today as he is off the drip. He has a bit of a rash on his face from an adverse reaction to the drug that he was given to reduce his blood pressure. He is due a course of chemotherapy, and they want to monitor his reaction to that as well as how he fares without the fluids drip. If all is well we’ll bring him home, Henry will be happy to see him again!

Saturday 12th February 2005

The doctors decided to keep Christian in for further examination as his blood pressure was a bit high. The good news is that he was released earlier today and we are now home.

Sunday 13th February 2005

I almost didn’t update the site today because there is no real news. But I guess you may like to know that Christian has been in a lovely mood for most of the day. (Auntie) Sam and (Uncle) Paul came around and he spent most of the day happy and was very excited with his dancing Dora the Explorer doll.

Thursday 17th February 2005

You may remember that Christian was due in hospital today to have a head scan and have a sample of bone marrow taken. He needs a general anesthetic for these and he unfortunately is not well enough to have it. He has a bit of a temperature and his breathing is a bit too fast, they suspect it’s a chest infection. He has been given antibiotics and will be staying in the Royal Marsden for a night or two for further observations. We hope to reschedule those two tests for when he’s better. We still hope to go ahead with the bone scan tomorrow. Next Wednesday’s operation should still go ahead as planned.

Friday 18th February 2005

Christian has still been a bit unwell today so he’s been given antibiotics. The good news is that he managed to stay still for the CT head scan without anesthetic, and that was negative. The bone scan and bone marrow sample will have to wait until Monday. His chemotherapy will wait until tomorrow too when , hopefully, he’ll feel better. Christian will soon look just like his dad; his hair has started to fall out so I’m taking my clippers in tomorrow and he’ll get a grade 1!

Monday 21st February 2005

Christian has been much better for the last couple of days. The antibiotics seem to have cleared up the infection and he is eating and drinking, if somewhat selectively. He had the operation today to take a sample of bone marrow and we should get the results for that tomorrow. He also had a tube put down his nose to make it easier to feed him, this lasted about 5 minutes after he came to, when he pulled it out. Oh well; he’s eating well at the moment so it’s not a major problem, we may have to try that again. Unfortunately there is not enough time for the bone scan now until after he recovers from the operation on Wednesday (when the kidney and tumour get removed). We should get the results from the bone marrow tomorrow. We should take comfort from the fact that the doctors are very confident that the cancer hasn’t spread and I guess the fact that he was playing football with his Nana this evening should confirm that. Tomorrow we are taking him to St George’s in the afternoon were he is getting some tests to prepare him for Wednesday’s operation. We should be able to bring him home for a night before taking him back to the hospital were Keith Holmes will perform the surgery. After the operation he may stay there or be moved somewhere else for recovery. By the way, I did take my clippers in yesterday and cropped his hair, and he does look like his dad. He also looks like he lives in a caravan and has a dog on a string. I’ll take a photo of him tomorrow and share it with you…

Tuesday 22nd February 2005

We took him from the Royal Marsden to St George’s this morning for some blood tests. He will have the operation there tomorrow morning. We are now home and as he was in such a good mood I took some photos to show you the new haircut (here they are).By the way, Claudia received this from a family friend in the US who is a cancer specialist…

From: Terrie Pustilnik [mailto:tbpmd@swbell.net] Sent: 19 February 2005 2005 17:35 To: ‘Claudia Blandford’ Cc: harold.behrman@yale.edu; bob.parish@enscitech.com Subject: RE: Christian I hope Christian’s tests have come back OK. I am praying and thinking about him daily. There is a very recent article looking at clear cell sarcoma of the kidney in the Journal of Clinical Oncology (deb vol 22). They had 40 children and were trying to compare 2 different ways of doing chemotherapy. The chemotherapy that they were using was vincristine, doxorubicin and dactinomycin. The patients ranged in stage from 1 through 4. (Stage is determined by seeing if there has been any spread of the cancer or not). Stage I is early and Stage IV means there has been spread . Patients had surgery and usually some radiation therapy to the area where the cancer was following surgery. It appears that the longer chemotherapy treatment was associated with a longer survival time. The overall 8 year survival was very good at 87%. This means that even though your son may have an aggressive cancer, the odds are in his favor that he is going to do well. (But he may be in for a fair amount of treatment).

Christian is hopefully stage 1 or 2, so this sounds positive.

Wednesday 23rd February 2005

The surgery seems to have gone very well, Christian was in theatre for 5 hours. The surgeon, Keith Holmes is confident he removed all the tumour. It was 10cm x 15cm and 1.1Kg, almost 10% of his body weight. He is now recovering at the Pediatric Intensive Care Unit at St. George’s.

I have come home for a couple of hours and will be going back to spend the night with him there. Claudia will be home tonight.

Thursday 24th February 2005

Christian is now out of intensive care and into his own room in St George’s. The phone number there is 0704 6200076 (x3517), Claudia is there tonight. He is sleeping lots and whimpering a little bit but is being kept comfortable by pain killers. Most of the tubes and monitors that he was on yesterday have gone so he looks a lot less scary. We may be moving him back to The Royal Marsden or The Portland in the next couple of days if he is well enough. The prize for “best tough love e-mail” goes to Neil Gillespie for the following…

Great to hear all went well. Just imagine if it was you and 10% of your body weight. They’d need a crane!
Neil

As if coping with cancer in your child wasn’t enough….

Saturday 26th February 2005

We have, remarkably, been sent home. To quote the surgeon, “it is a record breaking recovery from a five hour operation”.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Monday 28th February 2005

A few people have asked me how Henry is coping with all of this. This evening, just after I put him to bed I asked him if anything was worrying him. Henry said “Yes, when Christian grows up will he be a man without any hair even on his legs?”. I explained that after the medicine stops, his hair will come back and by the time he is three he will be back to normal. He seemed happy with this but then said something else was worrying him, I asked him what it was and he replied “When I grow up I don’t know if I want to be an astronaut or a normal man, because I want to be both”. Now there is a conundrum. Christian is well. A bit delicate, but recovering well.

 

Thursday 3rd March

Christian was due back at the Royal Marsden today for a bone scan. The idea was to give him a sedative and then he would fall asleep and would lie still while the scan took place. The doctors even hoped that he would remain sleeping as they inserted a nasal gastric tube. Unfortunately two doses of sedative were not enough and Claudia had to hold him down as the scan took place. The good news is that the bone scan was all clear and the results of the marrow test last week were clear too. So all the tests have been done and there has been no spreading of the cancer that they can see outside of the kidney. The pathologist’s report on the kidney also came back today. It confirmed the fact that it was a stage 2 clear cell sarcoma. The plan for post operation treatment has now been drawn up. He will be taking 3 different types of chemotherapy drugs, one which is weekly for 6 weeks and the other two are every three weeks for 6 months to all run concurrently. There will be no need for radiotherapy. Bearing in mind we were expecting chemotherapy for a year this is very good news. He took one dose today and next Friday he will take the first triple dose. All the treatment is being done as an outpatient at the Royal Marsden. Christian has lost quite a lot weight recently, which is why the doctors are keen to get nutrients into him with the tube up his nose. He has, however, started eating again and we are hoping this continues so he builds up his strength for next Friday.

Tuesday 8th March

Just a quick note to say that Christian has been very happy for the last couple of days. He is eating and drinking well and is looking much better. He is a lot stronger than he has been for the last month and is walking around and playing normally. He is very giggly and has spent a lot of the time looking like this…

On a separate note, Claudia and I would like to thank all of you for your kind words, generous gifts and kind hearted actions over the last few weeks. We are very fortunate to have so many thoughtful friends and such loving families. Claudia is panicking that she has not written any thank you letters, but I guess that’s Claudia…

 

 

Thursday 17th March

I have started to get calls from people asking me to update the site and I guess I shouldn’t just write when there is a problem. Christian is still pretty good, he had a couple of niggly days after the chemo, but he is now pretty happy most of the time. For some reason he has taken to waking up at 5.30 – 6.30 am every day, but that is not a major problem. He is going in on Friday for a dose of Vincristrine (the weekly chemo drug) and we are hoping he continues to be a robust as he has been so far.

Monday 21st March

Christian had a high temperature yesterday so I took him to St George’s. I spent the night with him there and he has now been transferred to the Royal Marsden after much pleading from us. He has to stay in hospital for a couple of days as he needs intravenous antibiotics. The chemotherapy knocks the white blood cell count which makes it difficult for him to fight infections without help. We are hoping he’ll be back home later this week. Claudia is currently at the Royal Marsden with him.

Wednesday 23rd March

Claudia brought him home today. He seems a bit better; as he is going in to the Marsden tomorrow for chemo, they were happy for him to spend the night at home.

Thursday 24th March

Claudia took Christian down to the Royal Marsden today for his chemotherapy. Unfortunately he’s not very well so they have decided to keep him in. I’m on my way down there to take over and Claudia will be home tonight.

Friday 25th March

I have just brought Christian home. He has a nasty cough but they think that it is viral, not bacterial and therefore not any more dangerous than if he wasn’t neutropenic. Claudia is taking him in for a checkup on Sunday morning to make sure that he is still OK. Henry and I will be going off together for a week’s father/son bonding on a ski trip which was booked months ago. I thought about canceling it but Claudia wouldn’t let me, and if she did, Henry would never forgive me!

Sunday 3rd April

Henry and I returned from the slopes today. Unfortunately Christian has not been well in our absence. The portacath (a tube fitted to an artery near the heart to allow access the the bloodstream) has become infected. He and Claudia have spent all of the week at The Royal Marsden where he has been on antibiotics.

He needs a further 10 days of treatment which, apparently, he has to finish off at St George’s, apparently they need the beds at the Royal Marsden for chemotherapy treatment. We are not very happy about this as The Royal Marsden is far more comfortable and, we feel, he gets far better care there.

We are trying to find an alternative hospital or another arrangement, for example a private nurse to come to the house and administer the antibiotics 4 times a day.

We should find out tomorrow what the plan is. The good news is that the antibiotics seem to be working and he is very happy in himself at the moment. He has had an nasal gastric tube fitted which looks a bit scary but is providing him with lots of nutrition overnight to build up his strength.

Tuesday 5th April

Christian came home today. He has been given an oral antibiotic instead of an intravenous one and, as such, he does not need to go into hospital for it. He seems in pretty good spirits, if a little bit disorientated.

Tuesday 19th April

I’ve just got back from a night with Christian on the ward at St George’s so forgive me if this all comes out as a jumbled mess. All weekend Christian was very happy, eating and drinking well and generally having fun. Sunday night something hit him and he was throwing up during the night. He was due to go to The Royal Marsden for a checkup and some drugs to boost his white blood cell count on Monday so we went early and spent all day there. He had a slightly high temperature and he was given some antibiotics.

By the end of the day he seemed a bit better so we were sent home with the strict instructions to phone if his temperature “spiked” again. By 9.00pm his temperature was up to 38.7 and however hard I tapped the thermometer it wouldn’t go lower. As Claudia spent a lot of Sunday night up with Christian, I took him to the ST George’s Hospital.

He has now been given two more types of antibiotics until they get results of blood tests which show what particular bug he has. One of the concerns is that he may have either an infection in his portacath or the same infection has come back from a couple of weeks ago. If this is the case he may need to have an operation to have it replaced.

If, however, it is a different infection it may be treatable at home by either oral antibiotics or by once a day intravenous antibiotics that the community nurse would administer. The care at St George’s was very good last night and although it is not as comfortable as the Royal Marsden it wasn’t too bad.

Friday 22nd April

We got back from St George’s yesterday. Christian is on intravenous antibiotics once a day which are being administered by a community nurse. He has the same bug as before

(an infection of the portacath) but the doctors are hoping that a full intravenous course will clear it up. If not he will have to have an operation to remove and replace his portacath and will be back at St George’s for a week or so.

I am doing a 10km run on the 3rd July (details here). I have been wondering what would be the best place to raise money for and have decided after our stay at St George’s that the money will have most effect there. There is a ward called the Pinkney Ward which takes most of the kids with Cancer and they have their own charity administered by the very efficient Sister in charge. You can stipulate where you want the money spent and, depending on how much I raise, I have some good ideas. First on the list is some high chairs (there are none) and black out blinds (Christian wakes as soon as the sun comes up) but I have plenty of other ideas if I raise more.

Morgan Stanley, my very understanding employers, have offered to match anything I raise up to £2000. Claudia and I will personally do the same, this means your generous donation could be worth 4 times what you give. To offer some money send me an e mail or even better sign the guest book to publicise your generosity and encourage others.

Thanks in advance…

Friday 29th April 05

Christian has been home all week, is eating and drinking well and seems very happy. We are waiting for the antibiotics course to finish this weekend to see if his infection comes back or not. If it does come back, there may be no option but to return to St George’s to have his portacath removed and replaced. Let’s keep our fingers crossed.

The good news is that the sponsorship is going fantastically well. Claudia’s company Porcelanosa have very generously offered to match sponsorship for £2,000 too. Morgan Stanley will match £2,000 per employee involved so we may persuade them to match all the money raised by getting more of my colleagues to run! All good stuff.

Sunday 2nd May

Good news and bad news: the good news is that Christian has been in a fantastic mood for the last couple of days, he was very taken with his cousins Elizabeth and Thomas who came around for a barbecue yesterday (Elena took some photos here and here).

The bad news is that the blood cultures from Friday’s blood tests show that the bug in his portacath has not been cleared up. He will need the portacath removed in an operation, then a series of antibiotics and then the portacath replaced in a different operation. He will probably go into St George’s tomorrow for the first operation.

His hemoglobin levels are a bit low too so he’s going in to St George’s for a blood transfusion this afternoon, which will take a few hours.

Saturday 7th May

Christian had an operation on Thursday to take out the portacath and came out on the same day. He’s got a canular in his hand (a needle and tube) which is being left in as he needs more antibiotics. We are taking him back to St. George’s this afternoon for the last dose and they also want to take some bloods to make sure the infection has cleared up.

Claudia is taking him to the Royal Marsden on Monday to discuss the next stage and we’ll find out when the portacath is going to be replaced then

Wednesday 11th May

We were in St George’s today for Christian to have an operation to have a new portacath fitted. He is now home and all is fine. The only drama was that an antibiotic was given too quickly (it should have been an infusion over an hour and it wasn’t) and he got “red man syndrome”. This meant he swelled up and was his skin was very itchy, some drugs soon cleared up the problem.

Claudia is taking Christian back to the Royal Marsden tomorrow for a triple dose of chemotherapy. He is now just having the three weekly triple dose, and no longer has the weekly single dose.

The good news is that we are now halfway through his treatment. All down hill from here…

Friday 27th MayWe were hoping to be heading to our villa in Spain tomorrow for a week’s relaxation over half term. Unfortunately Christian’s neutrophils are a bit low. This means that even though he is very happy at the moment, he is susceptible to infections, and a it’s not advisable for him to be too far from home.

This means our villa is free for the next two weeks and we’ll be happy if anybody can make use of it. The details are here www.villabegur.com. A small contribution to the sponsorship fund may be required depending on financial circumstances!

Saturday 4th June

Christian went to the Royal Marsden yesterday for a triple dose of chemotherapy and some tests . As he is now over 12kg (just) he had the full dose, until now he has been on 70%. It seems to have hit him fairly hard and he’s been a bit sickly today not being able to keep food or drink down for long. We’re hoping this doesn’t last long as if there’s a danger of him getting dehydrated he’ll have to be admitted to hospital so he can get IV fluids.

The good news is that both tests that he had yesterday (a chest x-ray and an ultra sound) were clear.

Sunday 19th June

We made it through the difficult bit after the chemotherapy by giving Christian water from a syringe every 10 minutes, which he managed to keep down. He is now happy again and is eating and drinking well. There are now only a couple of weeks left to the run! As you can see from the total at the top of this page the sponsorship is going fantastically well.

This will make a real difference to the comfort of the children being treated at St George’s. I have discussed the money with the sister in charge and the ideas so far are :

1. New curtains and blackout blinds
2. High Chairs
3. Bed Pans (they can’t get any on their budget!)
4. New child friendly decor or pictures
5. Children’s cutlery and plates
6. New toys and budget to replace toys when they get damaged

Thanks again to all of those people who have generously pledged sponsorship. It’s not too late if you have not yet got around to it, just send me an e mail by clicking here or even better sign the guest book by clicking here.

Because there are now 9 people running from Morgan Stanley, they will match up to £18,000! so your donation could be worth twice what you give.

Monday 3rd July

First things first, Christian has been pretty well recently hence the lack of updates. His hair is growing back a bit and his speech is coming on very well. In true Blandford/Parish style, it is now tricky to keep him quiet.

Yesterday was the 10km run that I have been talking about. I managed to drag myself around the full distance in a leisurely 56 minutes, and have been barely able to move since.

 

If you were kind enough to sponsor me please send a cheque to me at
home.

I am Gift Aiding the whole amount raised as though it was a donation from me to save on paper work so please make all cheques payable to me. If you would prefer to make a cheque direct to the charity (St George’s Charitable Foundation) please contact me for a gift aid declaration form.

Thanks to your generosity and Morgan Stanley’s matching, the Pinkney ward at St George’s will receive over £45,000. It should make a real difference.

 

Friday 15th July

Christian was due to be having his chemotherapy at the Royal Marsden today. Unfortunately he has had a high temperature since yesterday afternoon which is a sign of infection. Claudia took him to the Royal Marsden where they started him on antibiotics and then brought him to St George’s where I am spending the night with him at the, now famous, Pinkney ward.

He has had a bad day with Claudia and was quite upset most of the day. Fortunately for me, by the time I arrived the antibiotics had kicked in. They have taken bloods and will grow cultures to try to identify the bug so they can decide what the best antibiotic is for the job. That will probably take a couple of days.

We were hoping to go to Begur in Spain Monday, and my mum and sisters and all their families were joining us there next week for another week. We are still hoping to get there for the second week to join my family.

Most of the money has come in now, thank you very much. If you were kind enough to sponsor me and haven’t got around to paying please either send me a cheque or e-mail me for my bank detail for direct transfer. For what it’s worth Christian finally fell asleep tonight at 9.00pm when the sun started to go down. I wish those blackout blinds were already here…

Sunday 17th July

We’ve had a couple of nights at St George’s with Christian and he has been put on oral antibiotics and sent home. It took that much time because the doctors wanted to make sure that it was not a serious infection which would need more heavy duty antibiotics and he kept “spiking” temperature.

We will be going to the Royal Marsden tomorrow and if he is well enough they will give him the chemotherapy he didn’t have Friday. Henry is very excited because now that it’s school holidays he’ll be coming along, and they’ve got great toys there.

Claudia keeps bleating on about the fact that she and Christian were taken from The Royal Marsden to St George’s by ambulance and I haven’t mentioned it. Apparently it was very exciting.

While I was at St George’s, I spoke to Francis, the nurse who will administer the money we have raised. As the amount raised has grown, its effect will become more significant. They, apparently, got turned down a year ago for a grant to improve the treatment room which is seriously in need of modernisation. This will now be possible.

They are also getting a new waiting room (until now parents have had to wait in the kids play room until a bed is available). Whilst the room has been allocated for the waiting room, the money wasn’t there for chairs and curtains and so it has been delayed. This should now be taken care of.

Monday 18th July 2005

The chemotherapy went ahead at The Royal Marsden today. Unfortunately there was a complication with one of the three drugs. One of them is a slow drip over 4 hours and the needle slipped out of his portacath in the last few minutes and leaked into him. Bizarrely enough the chemotherapy is far more dangerous out of the bloodstream than in it and so Christian will have to stay in overnight so he can be monitored. He needs to have cream applied every 2 hours, it will feel, to him, like a burn beneath the skin.

Claudia will be spending the night with him but we have been told he should be released in the morning. We hope so as tomorrow is his second birthday. We have no real plans as we were hoping to be in Spain but we’ll certainly have more fun at home than at the Hospital…

Tuesday 19th July

Well he’s home. We need to pop back to the hospital tomorrow to make sure he’s recovering from the chemo leak but are still hoping to fly to Spain in the evening .

He’s enjoying his birthday so far and we’re having a little party for him later.

Tuesday 2nd August 2005

We made it!

 

 

 

 

 

 

 

 

 

 

Sunday 18th August

Christian has been very well recently, hence the lack of updates. His last chemotherapy is scheduled in less than two weeks, which is an important milestone that we’ve been looking forward to.

I have finally collected all the sponsorship money at the final amount raised is over £47,000. Thanks very much to all of you for your support. I have received a couple of letters from St. George’s which were very nice, they are here andhere.

Sunday 23rd October

Christian had his last chemo three weeks ago. He got a temperature on Thursday evening when he was still neutropenic from the chemotherapy. We took him into St George’s and he has spent the weekend in and out, getting regular intravenous antibiotics. The doctors think that it is probably viral and will therefore not be a problem for his body to fight but it takes 2-3 days to discover if an infection is bacterial. The protocol is to treat it as though it were bacterial (hence the antibiotics) until proven otherwise. Hopefully by this evening no signs of bacteria on the blood samples taken on Thursday will mean that he is in the clear and we can stop the course of antibiotics.

He was quite poorly on Thursday but has been fine for the last couple of days. Hopefully this will be the last time that we have to go into hospital for something like this…

On a side note, it is very rewarding to go back to St George’s and speak to the nurses who are so happy with the money I was given as sponsorship. The money has not yet been spent but I am convinced that it will really help. Thanks again for your generosity.

Tuesday 15th November

All is good in the Blandford household at the moment, Christian has become a dancer.

January 1st 2006

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….

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 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.

 

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.

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…

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.

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 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.

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.

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.

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.

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.

 

 

30th December 2006

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…

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……………….

To sign up for the run click here and fill in the online form and send Pete an e-mail here.

 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…

 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…

 

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.

 

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…

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.

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.

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…

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.

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?”

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.

Monday 5th March 2007

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. 

 

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@christianblandford.com.

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.

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 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.

 

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.

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.

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…

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.

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).

Saturday 21st April (Aunty Danny’s Birthday)

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

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…

There are a few more recent pictures here .

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…

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.

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?

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.

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!

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.

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 onlinehere. 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 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. 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…

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 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 aan 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.

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. There was a strange moment in the school car park when he started back at school. A whisper went around the crowds of parents and teachers when they saw Christian, and as he stood there looking confused, a round of applause went up from everybody around him.

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.

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!

21st March 2008

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.

9th January 2009 – Good News

Christian has been complaining about leg pains for the last few weeks, mostly at the bottom of his right leg. This has obviously been worrying us as these were the symptoms when his cancer last relapsed to the bone. We told the Marsden about it at his review before Christmas and he was booked in for a bone scan today. Christian was incredibly brave, he had to have a cannular in a vein in his arm to give him a shot of radioactive material for the scan and blood tests. There were no tears or complaints and he laid perfectly still for nearly an hour for the bone scan. I think he enjoyed his recent celebrity status as all of the doctors and nurses commented on recognising him from the recent fund raising brochure for The Royal Marsden! Kathy Pritchard Jones, his doctor, was kind enough to stay late after work to check the scan and said that she was pretty confident it was all clear but would need final confirmation from a radiologist. She has just called us (8.00pm Friday) to tell us that she has got hold of a radiologist who agrees that everything is clear. He, obviously, still needs to go back for regular checks but for the moment life is good. HAPPY NEW YEAR!

17th March 2009

Christian and Claudia went to the launch of a new campaign at the Royal Marsden in Sutton yesterday. They asked to use one of our photos for the campaign, guess who they chose to take the mickey out of?

Claudia was very excited to meet Dermot O’Leary and once Christian recognised him as the bloke who introduced Michael Jackson recently at the O2 even he was impressed. As they were saying goodbye, Christian tapped Dermot on the leg and whispered “What’s Michael Jackson like?”. Claudia was interviewed by the BBC and apparently has been on the news a lot today but we have missed it! Photos to follow but here is a link to the BBC website. Here is a link to Claudia’s interview.

13th feb 2010

Christian had his regular (4 monthly) check up at the Royal Marsden last week. He has had a persistent cough since Christmas which was enough to worry us. Happily everything is fine and the chest X-Ray came up clear.

He took a DVD we made of him dancing to Michael Jackson and charmed all the doctors and nurses with it. The sad news is that Kathy Pritchard Jones who last looked after Christian from the beginning is moving to Great Ormind Street were I am sure she will continue to do great work. We have made an appointment with her in March to check Christian’s kidney function which was low last year, she will be leaving The Royal Marsden soon after. We have promised to give her a copy of Christian’s DVD as he wouldn’t part with the one he took.

June 2010

Christian’s latest check up went well again, he will now be having 6 monthly check ups.

Christian has always loved dancing, even when he was unwell and tiny he was a funky mover…

Here he is a few years later and much healthier

The story carries on in the blog on the home page or here for all the posts about Christian,in chronological order.