Tag Archives: The Royal Marsden

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.

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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…

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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.

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At The Royal Marsden

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.

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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!

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Stem Cell Harvest

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…

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A Spike

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.

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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.

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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.

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MRI and CT results

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.


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