Category Archives: Christian’s Story

The Bone Biopsy

Christian had the bone biopsy today, it all went fine and they got a good sample. We will not get the results until next week so the Hickman line insertion is going to wait until then. He was in pretty good form all day, the biopsy was quite intrusive so he’ll be a bit sore for a few days.

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Bone Biopsy – Inconclusive

Christian had a Hickman Line fitted today, they also took a sample of bone marrow from his hips for testing. The operation went fine and he is now at home and relatively happy, if a bit concerned about the tube going into his chest…

The results from the Bone biopsy came back today and unfortunately they were “inconclusive”. This means that he will need to go back in and get another biopsy before treatment can begin, we haven’t got a date for this yet. Tomorrow we are going into the Royal Marsden to see Cathy Pritchard Jones who is back from holiday, she wants a couple of tests redone including the chest and leg x-rays. He is also going to get a kidney test (as one of the chemo drugs could effect it) and some blood tests.

On a lighter note, Henry lost his first tooth today. Photos to come…

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Bone Biopsy

We took Christian to Stanmore Orthopedic Hospital today for another bone biopsy. It all went fine and the surgeons are confident that they got a decent sample this time. He is a bit sore but was allowed home. The results may take over a week but we are (sort of) hoping they come quicker so the treatment can begin.

Peter Blandford's photo

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Confirmation

The biopsy result finally came through today and the growth in Christian’s leg was confirmed to be a reoccurrence of the Clear Cell Sarcoma.

We are taking him for his first Chemo on Sunday and he will stay in overnight so they can keep an eye on him. He may be home during the day on Monday but will have to go back for a second drug on Tuesday. His treatment will be every three weeks after that for 18 weeks followed by the “high dose” chemotherapy.

His is recovering from the biopsy but is still a bit sore and isn’t walking on it yet. Other than that he has been in very fine spirits.

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Panto

We have just got back from the Royal Marsden. Christian had two different Chemotherapy drugs, Etoposide and Carboplatin. Carboplatin is given over an hour. Etoposide is also given as an hour drip but for 3 consecutive days, so he had it on Sunday, today and is due to go back for the last dose tomorrow.

Yesterday he had a great day, Henry came with us and the staff at the Royal Marsden put on a pantomime in the afternoon which was very good. Before anybody asks, I was not drafted in at the last moment…

Peter Blandford's photo

He slept well last night and has been very happy until the nausea kicked in this morning. We have a couple of different drugs which will, hopefully keep the nausea under control.

The next dose will come in the new year when he will have the Etoposide again, this time he will have it with Cyclophosphamide which has to be given overnight with a hydrating drip.

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A Spike

We came in to the Royal Marsden today for chemo and Christian temperature “spiked”. It would seem that he has an infection of some kind, probably viral. He has been given intravenous antibiotics and will need to stay overnight as the next dose is due at 1.00am. From tomorrow, it will be due every 24 hours so we may be able to go home.

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At home

Christian responded well to the antibiotics and we are now home. He needs another dose tomorrow and a community nurse will come to our house to administer it.

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Neutropenia

Christian and I are currently at St. George’s. He got a temperature yesterday and as he is very neutropenic he can’t fight infection. He is on antibiotics and is happy so I am hoping we get home later today or tomorrow. His Hickman line has become slightly dislodged so they struggled to get blood out of it last night but they got there in the end. He may need that replaced soon.

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Christmas Eve 2006

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We have been in and out of St. George’s for the last few days getting antibiotics for Christian. He has also had GCSF to boost his neutrophils and a platelet transfusion as they were very low. The last couple of nights we have brought him home to sleep and yesterday he was home most of the day, returning to the hospital three times for his antibiotics. He had the last dose of that this morning and we are waiting to see what his blood results are to see whether he needs more GCSF.

Nanny and Grandad (June and Sandy) were here yesterday and the boys got their presents. Henry and I have been playing scalextrix all morning and Christian is very excited about his pink dancing car! it could be worse Danny was threatening me with buying him a pink fairy costume…

Merry Christmas from all of us and thank you for all of your support over the last few weeks. It really has made a massive difference.

 

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Christmas 2006

30th December 2006

Fortunately, Christmas was fairly peaceful. We had to visit the hospital every day in the morning to get some GCSF but that was much better than the 3 visits a day it looked at one point that we would be making. Christian’s hair started to fall out so we had to give him a haircut which he was a bit upset about. It didn’t seem to help when we told him that it looked like Daddy’s hair now. I can’t say I blame him. He still looks gorgeous though…

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