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.
Category Archives: Christian’s Story
Neutropenia
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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.
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.
Posted in Blog, Christian's Story. Tagged with antibiotics, Christian's Story, temperature spike, The Royal Marsden, The Second Round.
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…
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.
Posted in Blog, Christian's Story. Tagged with Chemotherapy, Christian's Story, Pantomime, The Royal Marsden, The Second Round.
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.
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.
Posted in Blog, Christian's Story. Tagged with Bone biopsy, Christian's Story, Henry, Stanmore, The Second Round.
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…
Posted in Blog, Christian's Story. Tagged with bone Bi, Christian's Story, Hickman Line, Kathy Pritchard Jones, The Second Round.
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.
Posted in Blog, Christian's Story. Tagged with Bone biopsy, Christian's Story, Stanmor, The Second Round.
Hope
We met with the Doctors at the Royal Marsden today to discuss Christian’s treatment. He will start his chemo shortly after the biopsy and the fitting of the Hickman line next week, maybe as early as Friday 24th.
His chemo will be a lot more aggressive than the last treatment with a strong dose every three weeks for 21 weeks. At the end of this he will get a very intensive dose which will completely wipe out his bone marrow and he will then need a bone marrow transplant. We will have prepared for this by taking some of his healthy bone marrow out in a few weeks. Christian will need to be admitted for this final dose and is likely to be in hospital and very sick for a month or so before he recovers. After this other treatment may be required, including radiotherapy and/or surgery.
Christian is now strong and healthy and we are confident he is in excellent hands, this gives us hope for the upcoming year.
Posted in Blog, Christian's Story. Tagged with Christian's Story, hope, The Royal Marsden, The Second Round.
MRI and CT results
Wednesday 15th November 2006
The good news is that the MRI scan and the CT scan results show that there has been no spreading anywhere beyond his lower left femur (knee).
In order to confirm the fact that it is a return of the clear cell sarcoma he needs to have a bone biopsy which will be done in Stanmore Hospital early next week. The results from that should take a couple of days, but they would be very surprised if it’s anything else.
Christian is already booked into The Marsden next Thursday to fit a Hickman line (like the portacath he had before but with two points of access) and they will take a sample of bone marrow at that time to check if there has been any spreading there.
The exact protocol for treatment will be decided after the results of the bone biopsy but is likely to be every three weeks with alternate drugs. One of these will be an outpatient treatment and the other he will have to stay in overnight. After a series of courses (in about 18 weeks) he will be admitted for intensive chemotherapy which will be administered as an inpatient at the Royal Marsden over two weeks.
Claudia and I would like to thank all our friends and family for their support, it really makes a difference. I will try to keep this site updated with the technical stuff as quickly as possible.
Posted in Blog, Christian's Story. Tagged with Christian's Story, Clear Cell Sarcoma, Kidney, relapse, tests, The Royal Marsden, The Second Round.
