Claudia brought him home today. He seems a bit better; as he is going in to the Marsden tomorrow for chemo, they were happy for him to spend the night at home.
Christian had a high temperature yesterday so I took him to St George’s. I spent the night with him there and he has now been transferred to the Royal Marsden after much pleading from us. He has to stay in hospital for a couple of days as he needs intravenous antibiotics. The chemotherapy knocks the white blood cell count which makes it difficult for him to fight infections without help. We are hoping he’ll be back home later this week. Claudia is currently at the Royal Marsden with him.
I have started to get calls from people asking me to update the site and I guess I shouldn’t just write when there is a problem. Christian is still pretty good, he had a couple of niggly days after the chemo, but he is now pretty happy most of the time. For some reason he has taken to waking up at 5.30 – 6.30 am every day, but that is not a major problem. He is going in on Friday for a dose of Vincristrine (the weekly chemo drug) and we are hoping he continues to be a robust as he has been so far.
Just a quick note to say that Christian has been very happy for the last couple of days. He is eating and drinking well and is looking much better. He is a lot stronger than he has been for the last month and is walking around and playing normally. He is very giggly and has spent a lot of the time looking like this…
On a separate note, Claudia and I would like to thank all of you for your kind words, generous gifts and kind hearted actions over the last few weeks. We are very fortunate to have so many thoughtful friends and such loving families. Claudia is panicking that she has not written any thank you letters, but I guess that’s Claudia…
Christian was due back at the Royal Marsden today for a bone scan. The idea was to give him a sedative and then he would fall asleep and would lie still while the scan took place. The doctors even hoped that he would remain sleeping as they inserted a nasal gastric tube. Unfortunately two doses of sedative were not enough and Claudia had to hold him down as the scan took place. The good news is that the bone scan was all clear and the results of the marrow test last week were clear too. So all the tests have been done and there has been no spreading of the cancer that they can see outside of the kidney. The pathologist’s report on the kidney also came back today. It confirmed the fact that it was a stage 2 clear cell sarcoma. The plan for post operation treatment has now been drawn up. He will be taking 3 different types of chemotherapy drugs, one which is weekly for 6 weeks and the other two are every three weeks for 6 months to all run concurrently. There will be no need for radiotherapy. Bearing in mind we were expecting chemotherapy for a year this is very good news. He took one dose today and next Friday he will take the first triple dose. All the treatment is being done as an outpatient at the Royal Marsden. Christian has lost quite a lot weight recently, which is why the doctors are keen to get nutrients into him with the tube up his nose. He has, however, started eating again and we are hoping this continues so he builds up his strength for next Friday.
A few people have asked me how Henry is coping with all of this. This evening, just after I put him to bed I asked him if anything was worrying him. Henry said “Yes, when Christian grows up will he be a man without any hair even on his legs?”. I explained that after the medicine stops, his hair will come back and by the time he is three he will be back to normal. He seemed happy with this but then said something else was worrying him, I asked him what it was and he replied “When I grow up I don’t know if I want to be an astronaut or a normal man, because I want to be both”. Now there is a conundrum. Christian is well. A bit delicate, but recovering well.
We have, remarkably, been sent home. To quote the surgeon, “it is a record breaking recovery from a five hour operation”.
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!
As if coping with cancer in your child wasn’t enough….
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.
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:email@example.com] Sent: 19 February 2005 2005 17:35 To: ‘Claudia Blandford’ Cc: firstname.lastname@example.org; email@example.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.