might be worth tuning in
10:35pm tonight (12th June)
"Teenagers Charlotte and Andrew are newly diagnosed, and while Andrew's case appears the more straightforward, Charlotte has complications that make a bone marrow transplant her only chance"
http://www.bbc.co.uk/bbcone/listings/programme.shtml?day=today&service_i...
hi Rob
read your blog and comments re travel insurance, couldn't manage to post this comment on your site
but try AXA PPP for travel insurance, I paid £130 for the year to include my CML.
01892504444
You do not have to belong to PPP to use them.
You are unlikely generally speaking to have an emergency due to the CML, however any other company will always try to wriggle out of a claim saying that it is related to the CML. For such a relatively small amount of money it seems worthwhile having this.
Regards
Susan
ps like the photos.
hi david,
the girl was diagnosed with ph+ CML... there was no mention of Glivec which worried me a lot. this girl was lucky to respond and survive her transplant as she only had a 9/10 unrelated donor match. the family seemed to know very little/nothing about CML and its prognosis.
the boy had ALL and tragically did not survive the'therapy'
sandy C ;o)
Sandy - thanks for that. I agree that it was very strange Glivec was not mentioned on the programme. Maybe it was in fact discussed but not on screen. It might have given the family more time to decide on the which treatment approach was best for them and whether Glivec might have enabled them to wait to see if a 100% donor match could be found in due course. What a tragedy that Andrew died, going from diagnosis of ALL to the end in 12days.
David
Hi
I think you may find the the girl had PH+ and Acute Lymphoblastic Leukemia.
Having been to the Hammersmith this morning and discussed the program with my consultant to find out more about ALL, he said that Glivec may have been given only as a temporary measure but that ALL is also affected by the same change to chromosome 9 and 22 also with the PH+ Chromosome
Hi everyone, Rebecca and myself watched the programme last night and was very moved by both stories. They were both really brave. Sadly Andrew died and I broke down crying. Rebecca was sniffling too, it was good to see what the children go through with treatment because not everybody knows how hard it is on them. It was very informative, but also in Andrews case very sad. Dawn xxx
Hi Everyone,
What a moving program this was! Am I mistaken or did Andrew not die of complications of some bowel infection as a result of the Chemo and a weak immune system? Was it CDIF that he picked up. Truly ashame that he passed away so suddenly.
Did both of them have ALL but one was PH+? They mentioned the fact that the girl was PH+ made it more difficult to treat but for us with CML it is easier to treat PH+. I wonder why the difference in the two diseases?
Bil
Like others who have already commented above, a truly moving programme. I was under the impression that Charlotte was diagnosed with ALL with the added complication of a genetic presence of PH+ (similar to CML). As for Andrew, I didn't pick up the actual diagnosis but some of the treatment referred to seemed to suggest ALL. It was so difficult to comprehend that the actual treatment weakened Andrew to the point that he could not fight the bacterial infection in his gut in the end.
Charlotte's journey was captured very well but I do have to say having cared for my son through a transplant, there were a few critcal points that the documentary glossed over. Like others I await for the series to mention the great strides that have been in drug therapy as a treatment for leukaemia.
Parmjit
I too watched this programme and found it very moving. In fact I actually found it difficult to watch at times.
I agree with Parmjit, that there were quite a few critical points of the programme. It certainly wasnt a true picture of a normal BMT in my opinion, or Aaron's for that matter who also watched it. For example, the little girl went into isolation on the day before? or same day as her transplant - Aaron was certainly in isolation for a good week prior to his BMT. Aaron, and many of the other children I observed having BMT were very seriously poorly and there was no way that they could have eaten a meal for many many weeks - or months in some cases. Also I noted that Charlotte went home and was enjoying bbq's, cuddling her pet cat - none of which are allowed following a BMT. It made no mention of the almost certainty of having to be re-admitted to hospital following transplant due to temperature spikes, infections etc etc - again, all of which are the norm.
This said, I imagine they dont want to scare people too much. Charlotte was a very lucky girl.
Jayne x
Does anyone have a copy of this episode? I work for CLIC Sargent and a teenager with cancer asked if I could get hold of a copy because he missed most of the episode.
Hi everyone,
Interesting comments, and I say that as Charlottes Dad! I will try and address your questions....
Charlotte had Ph+ ALL and was diagnosed in January 2006.
Were asked whether we would particpate in the trial for Imatanib (Glivec) and agreed. It was suggested as the results with Ph+ CML had been positive. Please bear in mind only approx 5 children get Ph+ ALL each year so they really wanted to get everyone on the trial. Ph+ ALL reduces the survival rate from 80% to 30%, and only if a BMT is succesful. This had nothing to do with trying to get a 10/10 match donor. We were lucky in the end to get a 9/10 from Germany.
Andrew sadly died from a rare flesh eating infection, that was not caught at the hospital.
We were filmed from June to November. Many hours were filmed but it had to be condensed down into under 40 minutes. Unfortunately it did not show how ill Charlotte was prior to transplant. She suffered very badly with mouth ulcers and ended up in ICU for two days after reacting to IV Aspariginase.
As for the BMT, she spent the week before in Bristol (at CLIC House) undergoing chemo and total body irraditaion twice a day. She went into isolation a couple of hours before the transplant. She was in isolation for 27 days, and stayed in Bristol at CLIC for another week before coming home. The transplant itself went incredibly well, which given the number of infections she had prior to transplant amazed us (she was in hospital a total of 112 days in 2006).
Charlotte did have the BBQ and did cuddle her cat but it was a number of weeks later - the steak was well cooked and whilst there was a risk with the cat we had to weigh it up against the theraputic aid it gave her. Charlotte did suffer temperature spikes a couple of times after but only spent a couple of days in hospital (we were taught how to administer IV antibiotics)
If anyone has anymore questions, please ask.
Regards
Paul
Wendy - I can send you a copy of the programme if you still need it?
Hi Paul, Thank you very much indeed for your comments and I am very pleased that Charlotte is doing so well.
I think you are correct in what you say about T.V. only showing a small proportion of what goes on which is why I am glad that you posted to 'put the record straight'.
I also agree with you in that we sometimes have to make decisions based on what is right at any given time. I hope that you dont think I was criticizing you in any way for letting Charlotte cuddle her cat or eat your bbq, I just think that when you have been through something like we have then you tend to notice these things - especially when shown on t.v. I suppose its like a nurse or Dr watching Casualty, they automatically say things like -'thats not right, thats not how its done'.
My Son was diagnosed with CML at the age of 15 and underwent a MUD (matched unrelated donor). Like Charlotte, he is also doing really well.
I wish you lots of luck and love for the future and do hope that you will keep us informed of her progress
Jayne
Paul
I was pleased that you contributed to this discussion. The more informative experiences that can be shared on support sites such as this is, I believe, a step in the right direction. I have personal experience of not only supporting my own son (Dx at age 10, BMT age 12 in July 2005) through a matched unrelated donor transplant (like Charlotte also a German donor), but also know friends whose three year old son was diagnosed with ALL with Ph+.
I had to make myself watch the programme and I am glad that I did. For me, the learning point was the record of your son's interview following the news that he was not a suitable match for Charlotte, it was very moving and very poignant to me. Max's older brother was also not a match and I recall not being particulary supportive to him at the time of the news. I know that there were alot of things going on at that time, but with hindsight, I would have welcomed some support as to how to deal with his emotions at the outcome of this news. The programme therefore helped to bring this to the fore as something I have to deal with.
Like Aaron, we too kept a website log of our transplant journey (under the diaries section of this site) and hope that it, like the BBC programme, will help others.
Charlotte came across as a fighter and I would like to wish you all the very best for the future.
Parmjit
Hi,
I stumbled upon this site while trying to find out more about this disease and it's treatments after having watched the 2 episodes of Children Fighting Cancer that have been shown so far.
I am lucky enough to have not had to find out about this kind of thing before, and the families on the TV programme (and on this and many other websites and blogs) are simply amazing in the way they handle the situations they find themselves in.
While I appreciate from your comments that they haven't shown the full story on the TV show, for people who literally knew nothing before watching (like myself) the programme has been a revelation in explaining what families have to cope with.
Hopefully this series has raised awareness of the disease and various treatments with people around the country which will in turn encourage people to become actively involved in helping to find a cure.
It will also hopefully help give strength to families who are strugging to cope on their journey of having a child with leukaemia - as I'm sure sites like this do as well.
I caught this programme for the first time this week and was incredibly touched by it. My heart especially went out to Jack, probably because he reminded me so much of my nephew, what a brave young man Jack is. His story has really inspired me.
I wish Jack (and everyone else affected by this awful disease)lots of love and luck for the future.
Mel xx
