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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I stayed overnight with Christian at the Royal Marsden. The main concern is that he is not eating or drinking. In order for him not to get dehydrated he is on a drip and they are considering putting a tube down his throat so they can nutrients into him. It’s not as bad as it sounds, he’s a bit niggly, but not too uncomfortable and is sleeping well.

Claudia is going to stay there with him tonight. We are not sure how long he will stay in hospital, he will be allowed home when he is drinking on his own. He is now neutropenic (has low blood white cells) from the chemotherapy so he can not have paracetamol. He has been on Codeine and Morphine as pain killers and will hopefully not maintain a recreational taste for them.

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Chemotherapy effects

10.00am – Christian is not reacting very well to the chemotherapy. One of the side effects is a sore jaw, and this seems to be making him uncomfortable when he eats and drinks. The doctors were a bit concerned so we brought him to St. George’s Hospital last night and Claudia and he stayed the night. He has been on a drip to rehydrate him and we are now waiting for more news. 10.55am – We are taking him back to the Royal Marsden for further checks.

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Good News and Bad

(Very) Good news – CT scan confirms no spreading of cancer into lungs or, in fact, anywhere else.(Slightly) Bad news – biopsy shows sign of muscle in the tissue, this means it is either a variant of Wilms tumor (fetal rhabdomyoblastic) or it is a completely different cancer (rhabdomyosarcoma). This other cancer would be treated in the same way as a Wilm’s tumor so Kathy Pritchard-Jones suggests we start on the chemotherapy straight away. It would be very unusual for rhabdomyosarcoma not to have spread out of the kidney so Kathy still feels that the Wilm’s tumor is the far more likely problem. They will do more analysis of the biopsy to help decide. Christian had his first lot of Chemotherapy at the Royal Marsden at about 5.00pm.

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An Infection

Went back to St. George’s because a urine infection had been detected from Monday’s tests. Antibiotics administered intravenously and orally. Christian a bit niggly today…

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Biopsy

Keith Holmes performs a biopsy at St. George’s and fits a portacath (a direct access to the bloodstream for drugs and removal of blood). Christian woke up a bit upset but was happy for most of the afternoon.

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First Visit to The Royal Marsden

We took him to the Marsden where we met Kathy Prichard-Jones, she is the professor of pediatric oncology and happens to run a large team of researchers who research Wilms tumors. Wilms tumors have been “curable” for 20 years or so and 90% of children apparently make a full recovery. The treatment is chemotherapy for a few weeks, followed by surgery to remove the kidney and growth followed by more chemotherapy. He would need to have a biopsy and a CT scan to confirm that it is Wilms tumor and that it hasn’t spread anywhere else (unlikely from the fact that he is acting happy).

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The awful news

Christian had a lump in his tummy so we took him to Jake McKinnon, the pediatrician who originally diagnosed his reflux a year ago. He was immediately concerned and we took him for an ultrasound and an x-ray which seemed to confirm a Wilms tumor in the kidney. Blood and urine tests were taken. Keith Holmes is a pediatric surgeon who happened to be consulting at the same surgery on that day and he agreed that this was the most likely scenario and referred us to the Royal Marsden Hospital.

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 This is a copy of the original blog we wrote to keep our family and friends informed when Christian was being treated

Christian was born on 19th July 2003 at 10.25am

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