Tough love

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….

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The Surgery

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.

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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. 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.

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Some improvement

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…

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Antibiotics

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!

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An Infection

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.

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Dora

DSC06135I 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.

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Home

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.

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At The Marsden

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!

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A New Diagnosis

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 oClearf 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.

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