Category Archives: Christian’s Story

Bone Scan

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.

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Happy…

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…

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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…

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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.

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A temperature spike

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.

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Home

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.

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At The Royal Marsden

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.

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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!

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Problems…

DSC06490Henry 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.

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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.

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A Spike

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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.

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