The final onslaught of Chemotherapy is well under way and Sarah is two thirds of her way through receiving her last dose.This high level dose of Cytarabine (Ara-C) really has taken its toll on Sarah yet again: she is extremely tired, nauseous and her appetite is severely suppressed, only managing to eat one doughnut & a few crisps each day (Homer Simpson would approve). She is currently on the Lawrence Ward on the 4th floor at Barts and unlike her last hospital stay is not surrounded by her usual cohorts Linn & Karen – although there is hope that all the gang will be back on GHF shortly.
Unfortunately, the new PICC line Sarah had been given to administer drugs and give blood had to come out 24 hours after it was inserted but thankfully this was done with minimal fuss and without the horrors of the Hickmann Line which was removed last month.
Her last doses of Chemo are due Monday 8pm and Tuesday 8am so by lunchtime Tuesday that will be that and it is just a waiting game hoping that nothing serious occurs, but knowing that this might be a possibility and each day will bring new a challenge. Sarah hasn’t seen the kids since she left them last Wednesday but in all honesty it would be unfair for their visits as both Sarah and the children couldn’t fully appreciate each others presence.
The search for knowledge is always there and I have recently discovered another blog about another Leukaemia patient, which contains video diary on a stem cell transplant (http://baldyblog.freshblogs.co.uk/)
“See how many are better off than you are, but consider how many are worse”
Roman philosopher, mid-1st century AD
Sunday, 29 July 2007
Wednesday, 25 July 2007
Bart's Again x4
After 11 days back at home, we returned to Barts Hospital for a 9am appointment at the clinic with Professor Gribben as they wanted to talk about a bone marrow transplant (BMT).
By 10.15am we were still waiting for Professor Gribben to turn up (no one knew of his whereabouts) so we saw another consultant, Dr Heather Oakervee, instead. Sarah had received a call whilst at home requesting that she come to the Haematology clinic to discuss a possible BMT with the consultants which concerned Sarah as she was told 6 weeks ago that her treatment would consist of only Chemotherapy with no BMT. So, she had spent the last few days at home worrying why all of a sudden they were talking possible BMT. However, Dr Oakervee explained to us that from the beginning they look for BMT donors for all patients in case it is needed further on during treatment. The worldwide search had returned one possible donor for Sarah, a 9 out of 10 match (nothing to do with Whiskas I presume); ideally they would use only 10/10 matches and only 9/10 matches if the disease was still resistant to Chemotherapy and a transplant was the only viable treatment to secure remission for the patient. As all transplants have advantages and disadvantages – especially GvHD (Graft versus Host Disease) where the donors bone marrow attack the body of the transplant patient (the host) and can lead to fatality. It is important to remember that the consultants can not cure you from leukaemia but they can seek long term remission from the disease, with are all mortal!
Sarah's presentation of AML was classed as inversion 16 (a good risk AML) but she also had chloroma (lumps) present around her body which made the method for treatment not a classic textbook case. It is uncommon for inversion 16 AML to be presented alongside choromas, which are normally present with high levels of leukaemia in the bone marrow (over 20%, whereas Sarah had 13% Leukaemia in her bone marrow back in April). Sarah’s bone marrow is now in remission and the consultants do not advise that a 9/10 match BMT would be more beneficial for long term remission over chemotherapy, so we are going to continue with a fourth, and last, cycle of Chemotherapy; even if a 10/10 match was found the consultants advised that the decision for and against a transplant would be an incredible difficult one to make, as inversion 16 is treatable with long term remission via Chemotherapy, but the chloroma’s present added a different spin on the text book treatment.
So, Sarah will begin her 6 day high dose Chemotherapy as in cycle 3 so by Tuesday 12pm she would have finished her course, and then wait for the bloods to come down and then come back again until she will be finally sent home……..for good J. It is a strange feeling as we start cycle 4 knowing that this will be (hopefully) the last time Sarah’s body will go through this treatment and she can come home. We were in such a rush to get to the last cycle of treatment that now we are finally here, there is no rush to hurry through this course we need to make sure that the treatment works, Sarah remains healthy and she can secure a long term remission. AML will never go away, and shall always be in our lives but it is an acceptance that you have to carry on and not let it influence you too much, one thing is certain we can not and will not go back to the lives that we had before all of this.
As Andy Dufresne said in the film The Shawshank Redemption:
“I guess it comes down to a simple choice, really. Get busy living or get busy dying.”
By 10.15am we were still waiting for Professor Gribben to turn up (no one knew of his whereabouts) so we saw another consultant, Dr Heather Oakervee, instead. Sarah had received a call whilst at home requesting that she come to the Haematology clinic to discuss a possible BMT with the consultants which concerned Sarah as she was told 6 weeks ago that her treatment would consist of only Chemotherapy with no BMT. So, she had spent the last few days at home worrying why all of a sudden they were talking possible BMT. However, Dr Oakervee explained to us that from the beginning they look for BMT donors for all patients in case it is needed further on during treatment. The worldwide search had returned one possible donor for Sarah, a 9 out of 10 match (nothing to do with Whiskas I presume); ideally they would use only 10/10 matches and only 9/10 matches if the disease was still resistant to Chemotherapy and a transplant was the only viable treatment to secure remission for the patient. As all transplants have advantages and disadvantages – especially GvHD (Graft versus Host Disease) where the donors bone marrow attack the body of the transplant patient (the host) and can lead to fatality. It is important to remember that the consultants can not cure you from leukaemia but they can seek long term remission from the disease, with are all mortal!
Sarah's presentation of AML was classed as inversion 16 (a good risk AML) but she also had chloroma (lumps) present around her body which made the method for treatment not a classic textbook case. It is uncommon for inversion 16 AML to be presented alongside choromas, which are normally present with high levels of leukaemia in the bone marrow (over 20%, whereas Sarah had 13% Leukaemia in her bone marrow back in April). Sarah’s bone marrow is now in remission and the consultants do not advise that a 9/10 match BMT would be more beneficial for long term remission over chemotherapy, so we are going to continue with a fourth, and last, cycle of Chemotherapy; even if a 10/10 match was found the consultants advised that the decision for and against a transplant would be an incredible difficult one to make, as inversion 16 is treatable with long term remission via Chemotherapy, but the chloroma’s present added a different spin on the text book treatment.
So, Sarah will begin her 6 day high dose Chemotherapy as in cycle 3 so by Tuesday 12pm she would have finished her course, and then wait for the bloods to come down and then come back again until she will be finally sent home……..for good J. It is a strange feeling as we start cycle 4 knowing that this will be (hopefully) the last time Sarah’s body will go through this treatment and she can come home. We were in such a rush to get to the last cycle of treatment that now we are finally here, there is no rush to hurry through this course we need to make sure that the treatment works, Sarah remains healthy and she can secure a long term remission. AML will never go away, and shall always be in our lives but it is an acceptance that you have to carry on and not let it influence you too much, one thing is certain we can not and will not go back to the lives that we had before all of this.
As Andy Dufresne said in the film The Shawshank Redemption:
“I guess it comes down to a simple choice, really. Get busy living or get busy dying.”
Saturday, 14 July 2007
Home Again
Sarah was sent home - this time her neutrophils were just 0.4 but after being away from home for nearly 5 weeks she was allowed home (although we are unsure for how long!).
This last bout of chemotherapy has really taken its toll on Sarah both physically and emotionally. Lets just hope that there is only one more cycle of treatment to go and then that will be that (no more chemo).
These last few months have been particularly hard.......
This last bout of chemotherapy has really taken its toll on Sarah both physically and emotionally. Lets just hope that there is only one more cycle of treatment to go and then that will be that (no more chemo).
These last few months have been particularly hard.......
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