Villa on offer…

Friday 27th May

We 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 herewww.villabegur.com. A small contribution to the sponsorship fund may be required depending on financial circumstances!

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A new portacath

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…

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News

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

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Good and Bad News

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 hereand 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.

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Christian at home

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. MorganStanley 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.DSC06848

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Fund Raising

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. 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.

Thanks in advance…

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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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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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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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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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