Category Archives: Blog

More Chemo

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…

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2 Hospitals…

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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.

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At The Pinckney

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…

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The London 10km Run

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.

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Yesterday was the 10km run that I have been talking about. Imanaged 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.

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.

 

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More News

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.

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.

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Chemo

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.

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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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