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…
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!
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.
I 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.
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.
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!
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 of 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.
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.
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.
(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.