We mentioned our contact with other parents on this site to our consultant yesterday and he was interested to know which centres were treating children with CML, obviously as it is so rare.
You are here
Children with CML
Hi Trish and Dawn,
Rio is being treated at Bristol Childrens Hosp. I know his Consultant is in touch with other 'experts' but I do worry about the fact that CML is so rare in children. It would be interesting to have some statistics about it.
Max is being reviewed at the Royal Marsden in Surrey. His consultants use their colleagues at the main London hospitals who treat CML in adults as a source of advice and guidance.
His latest bcr/abl test came back negative! Can't believe we will be celebrating his second post-BMT anniversary next Saturday!
Delighted to hear that all is well. We all remember emailing Max in hospital and wishing him well. Can't believe that it is 2 years, but as it was shortly after my diagnosis - and I have had CMl 2+ years - it must be!
It was really nice for my kids to read his web site and email him. I am having a
'mini SCT' in the autumn and hopefully will do as well as Max.
Give him our best wishes and the same to you
I am currently in the process of setting up a support site for parents and families of children with CML. It is still in the fairly early stages at the moment but I am hoping that we will be going live with the site in the next few weeks.
I have been in contact with Sandy about the new site and she has very kindly agreed to put a link on this site so as any parents/patients can get to the site directly from here.
The reasons for me wanting to set up this site is because when my 15 year old son was diagnosed with CML I didnt really have anywhere to turn, apart from the wonderful people on this site. It would have been of great comfort to me to speak with other parents who were experiencing what I was going through.
I have since been in contact with various other parents of children with CML and they all feel the same way.
Aaron's Consultant at Birmingham Childrens Hospital has given me her full backing and support and feels that it will be very beneficial as she doesnt see CML very often, in fact I think Aaron was her first.
The new site's address will be www.childrenwithcml.org.uk As I mentioned hopefully it will be ready to go live shortly.
Much love to everyone.
Thank you for your replies, I will let Jack's consultant know.
Parmjit I love the thought of Max being well 2 years down the line.It gives me comfort,which I definatly need today as I am a weepy mess.I have been to work and if anyone has mentioned Jack I have been all tearful. So it has been nice to think of Max's achievement.
Jayne the childrens site sounds like a great idea. What will the numbers be like? Jack's consultants guessed a while ago that perhaps there would only be half a dozen children in the UK with CML.Obviously the site could attract a world wide audience to network with. I would like to keep up to date with other families experiences and progress.
We have just had Jack's pcr result.Jack's log reduction after being on Glivac for 6 weeks was very good. Unfortunatly the consultant did not have the result to hand so he couldn't remember if it was a 1 log reduction or a 2 log. But apparently both would be good at 6 weeks. He is to have another PCR at his next appointment in 4 weeks.
Best wishes Trish
It brought tears to my eyes to hear about Jayne's new site for children with cml! Thank you so much Jayne!Our Consultant told me a couple of days ago that she is only treating two children at present with cml. There are times when you feel so lonely. Friends and family are wonderful, but they aren't 'living it' like we do. Our Consultant has said that she is keeping the two children she is treating for cml on imatinib for a year and then deciding what would be the best course of action, depending on their response to imatinib and also their psychological readiness to cope with BMT, as well as the availability of a good match, of course. Rio has a 9/10 match available and the expert opinion is now that it is probably best to go ahead with a BMT in that case, as it is almost as good as a 100% match.We wont know until late September at the earliest, after his 'one year' bone marrow aspirate. The uncertainty can drive me almost round the bend at times. On the one hand I want him to be free of cml forever, but on the other I dont want him to go through such an unpleasant and risky procedure. We talk about what a BMT would be like to experience, but I am so aware that he is not able to imagine the implications in the way that I can. At the moment he is very keen on the idea of a BMT because he is fed up with endless hosp visits and taking medicine. We will be reading Max's diary sometime over the next few weeks to try to give him a better idea about the possible realities of a BMT.
Trish, Jack's results sound amazing! Rio has a 2 log reduction after 9 months and our Consultant says she is pleased with that! Have you noticed a difference in the way Jack is feeling? Is he at school full time? How are the aches and pains now? I can so identify with your weepiness - there are days when I find it hard to face the world and I seem to need a lot of sleep too. Other nights I keep waking and read for hours to stop myself from thinking too much. It can be exhausting to find ways of explaining things to Rio so that they are real but not frightening. You never know when you are going to find yourself having a deep conversation - they spring up out of nowhere. I think that this 'filtering' of information is probably one of the hardest aspects of the whole thing.
Parmjit - very many congratulations to you and your family and of course to Max, on his 2nd birthday! He should feel very proud too that his diary continues to be such an inspiration to others - what an achievement that is, alongside his wonderful recovery!
Much love to all
Jack is handling his diagnosis really well, though I don't think he has taken it totally on board.He had just turned 11 and he is still child like. Though one night when the Glivac wasn't tolerated he did throw a small panic attack and said " I'm not going to die am I." He did recover quickly with some reassurance, but obviously he has more going on in his mind than I have access to. Sometimes I doubt my ability as a mother to handle this situation as well as it should be dealt with.(Perhaps there is no precise way to handle it.)
Since diagnosis in February Jack has only had 5 days off school,that was the first week of diagnosis when he was in hospital with a sports injury. He has never felt unwell so it was a total shock. I think that is why the side effects of the Glivac are so difficult to handle psychologically as Jack was so well. However over the last 3 days Jack has noticed an improvement in the pain, I am keeping my fingers crossed that it is on it's way out.
Jack's consultant originally put him on Glivac with the aim that he could get through puberty then have a BMT. My eldest son is a match.(Don't know anything about the % of the match). However I think the Consultants train of thought now is to see the extent of the success of Glivac and take it from there.
Would it be an unreal expectationon on my part to hope that the Glivac will turn the CML into a managable chronic condition for my Jack and there will be no need for a BMT?(With hopefully a cure around the corner)
Please don't doubt your abilities to handle this situation as well as you should - there isn't a script for us to follow. I remember at first, thinking that the Hospital would tell me what to say and how to speak to Rio about cml, but if Id waited for that, Id still be waiting! I think all you can do is respond to where your child's thinking is at any given time. Sometimes Rio really just doesn't want to know, but at other times we have 'life and death' discussions which leave me emotionally and mentally in bits! Parmjit (Max's Mum)wrote to me that somehow you find the strength to cope - and so far so good. I'm sure you will too. You just love your child and go through it step by step together. But we need time to build ourselves up too, and I know I have to try to plan in some things to help me stay strong. For me that's time with husband or friends walking the dog - or going to bed early with a glass (or three!)of wine and a great book.
Its brilliant that your eldest son is a match - may I ask how he feels about it? What age is he? Interesting that your Consultant was thinking about waiting till puberty was over and then doing a BMT - that hasn't been suggested to us, but i guess like you say that it all depends on the response to Glivec anyway. For many adults, managing cml as a chronic condition is the only realistic option, but roll on that cure!
Thinking of you,
We are from Australia, my almost 14 yr old son has been diagnosed just 4 weeks ago. I feel like he is the only child in Australia with CML. It's good to read about other children with it and see how they are coping etc. My son had a rough time with Glivec at first but seems to be coping ok now. My email address is email@example.com should anyone want to take the time to have a chat, I would appreciate any advice etc.
Just wanted to tell you that you are not on your own! This website has been a lifeline to me since last August (2006). My foster son is nearly 14 so you and I are in similar situations as far as age at least is concerned, tho a huge distance apart geographically! What dosage is your son taking - Rio is on 200mg, which is half the usual adult dose. He started on a higher dose but his blood counts kept sliding down so it was lowered and seems to be having the required effect anyway. Is your son feeling well now and keeping up with his mates as far as sport etc is concerned? Rio was unwell for a few weeks, but he was quite poorly when he was diagnosed so it took a while to get his strength back. There are so many different scenarios that people experience! Do you know what the longterm treatment for your son is likely to be?
Thinking of you Juanita and your son - do keep in touch
Love kestrel xx
Thanks for taking the time to reply! Jared is on 400mg, BUT last visit to Doctors his wcc was down to 2.9, a little bit low, he didn't seem too worried but we don't go back for 2 weeks, so will see how he goes then. Looking back in hindsight, Jared has been lethargic for quite a while but I thought it was just teenagers etc. He hasn't been back to school since he was diagnosed (4 weeks ago), as he originally had a crushed vertibrae (leading us to find out he had leukaemia) so his back has been sore but the doc said there was no reason for him to go back now. He doesn't feel emotionally ready yet. As far as having much energy, no. Hopefully that will change over the next few weeks/months. Doctor said longterm treatment will be Glivec for as long as it is working for him. How wonderful we can talk about this even though we are so far away. I don't feel quite so alienated now. THANK YOU. How does Rio cope with having CML?
Good luck to you and Rio and your family.
I can so identify with what you say about thinking Jared's lethargy was 'just teenagers'!! Rio had lost some weight and was complaining of feeling tired, but he'd also got taller and I thought 'here we go - it's puberty kicking in'. For a couple of days he was saying that I was giving him too much to eat and he felt full and I was starting to think we should see a doctor if this continued for another day. It was also the end of a tiring first year at secondary school and I expected him to bounce back once he had no homework to do and could be out playing with his friends all day! He was due a routine medical at that time and I mentioned the weight loss, so amongst other things the Doc felt his tummy and found a hugely enlarged spleen. In less than a week we were in Hospital and cml had been diagnosed. He had other medication first to bring the blood counts right down, but started taking Glivec at the end of August 2006.The tiredness seemed to wash over him when we were in hospital (5 days) and it was a few weeks before he was able to get back to doing more active things when his haemoglobin levels were higher and more stable. He went back to school part-time in September and full-time mid-October. Now he is able to do anything any other boy of his age can do and is out on his bike from morning to evening! His blood counts are not far off normal and his cml is reducing well.
At the beginning he was scared and anxious and we had some heart-rending talks late at night in hospital. He knows that Glivec is reducing the level of cml, but also that Glivec is not a cure. We do not know at present whether he will be having a bone marrow transplant and he is finding the uncertainty about that quite difficult - we all are. But most of the time he doesn't even think about cml. He now feels so well that he isnt reminded of his condition except when he has to take his tablets or go to hospital for blood tests etc. None of us believed that our lives could ever be 'normal' again during the first few weeks after his diagnosis, but it is amazing how it begins to recede into the background and you find that you're not thinking about it every second of the day. I didn't think I'd be capable of being cross with Rio ever again either, but it's amazing how that has got back to normal too!
I hope this is helpful - but I know everyone's experiences are not the same. Whereabouts in Australia are you? It's such a big place and I keep wondering if you're in a city or town or somewhere rural with long journeys to hospital to do etc.
Hope Jared's back is recovering now!
Very much love to you all
I know what you mean about the uncertainty and I feel this may be a along term situation that we may need to get use to. Perhaps if the Glivec shows the desired results at 12 or 18 months (what ever your Consultant is aiming for) this may give us more direcion and piece of mind.
I must admit the thought of BMT scares me a great deal.
My eldest son who is a match for Jack is 14 years of age and I must admit he has no concerns about it. He has passed the psychological and medical examinations and is ready if needed. He say he is looking foreward to having time of school if and when it happens--typical teenager.
We have a third son, who is the middle child age 13 years and it was very touching to see that he was very disappointed that he wasn't a match.
Do you ever feel guilty that your thoughts are full of Rio's condiion and that you may not be focusing enough on your other children. Silly I know, as my elder two are never in the house and when they are there are dozens of friends with them so I know they are not suffering. Anyway we are of on holiday tomorrow to spend some quality family time together.
Love Trish. x
My son was diagnosed with CML nearly a year ago. He has just turned 13yrs old and is now in blood and cytogenetic remission. At molecular level he has 5% trace (bcr-abl). So we're nearly at zero reading!
He is being treated at Birmingham Childrens Hospital and his Consultant is absolutely wonderful, as are the nurses!
I am looking forward to this dedicated website for children with cml because it is such a rare condition in children and specialised forums are most certainly needed. It is a really scary place to be when you are a parent of a child with CML as the treatments and prognoses are not the same as other leukaemias, even within CML the treatments seem to vary..eg. BMT or no BMT...
Glivec is also in it's early stages and our children are the first to be taking the drug, so they are, if you like, test cases for glivec.
I find it to be a miracle drug, my son is so much better, side effects are very few now. Early days he had a lot of bone pain, mainly in his feet. Now it's a bit of water retention around his eyes, bit of skin rash and that's about it. He is as lively as a flea on a dog, he rarely misses any time from school, and we're looking to take him to the States next spring. He has a younger brother who is thrilled to bits as well!
I find it very difficult to describe how I am feeling about it all, I seem to have been focussing on the blood tests, then BM tests and now the zero reading, after we do the USA thing what's next? I can't look far into the future, I am living in the short term, I find that I don't really care about much other than making our family life as good as it can possibly be, we don't push our kids very hard at school anymore, academic achievement is not as important as it used to be..just being happy and getting the most out of life. Does anyone else feel like this???
It really does seem to me that CML seems to be appearing more and more in children these days. Whilst I realise that it is still very rare in children it makes me see that a site for children is important.
I was uncertain before as I thought it would only be a couple of parents/children that would use it, however reading all of your comments and posts I know that it will be helpful.
I felt like all of you did with Aaron, when he was diagnosed, through to transplant and also through his journey with GVHD. I was scared to death and also wasnt sure if I was 'acting' as a parent should. I also had 2 other small children at home who needed me but I had to prioritise my time with Aaron. All of these issues are so hard to deal with and you really dont get any lessons in how to deal with it.
Without this site to support me I'm not sure how I would have got through it all.
Best wishes to everyone.
The childrenwithcml website will hopefully up and running this week, but will let you know. I think that Sandy has said that she will put a link on it from here as well.
After reading your post, I am excited to think that maybe my son will be feeling "normal" once again. He was diagnosed just 4 weeks ago, due to turn 14 next Friday. Bumpy ride, emotionally draining - still, but when I read other peoples posts etc, it gives me lots of hope and I know we are not going through all of this alone, although we live in Australia where there seems to be no other children with this than my son? I can't find out, which is a real shame, as I would love my son to be able to talk to other kids with cml, as you said, it's different than other leukaemias, because they are taking their chemo every day at home, you are not around other people for support etc. My son hasn't gone back to school yet, as he has a back problem (symptom of cml), so once he feels he's ready, we will ease him back into it. Yes, enjoying life and all it has to offer certainly overrides all I used to think was important. Even my 10 year old daughter said to me the other day "mum, so many things in the world are wonderful and beautiful, even the hills". I wish you all the best.
We live in a suburb near Melbourne, we have the Monash Medical Centre not too far away, and 2 hours to the Royal Childrens Hospital (the best hospital in Australia thank god). So we are quite lucky compared to some of the other families who live in the bush. Jared seems to be coping with the Glivec a little better than before, maybe it gets better with time? His eyes are a little puffy and his appetite isn't quite what it was beforehand. BUT it is amazing how quickly life settles back down, he still fights with his little sister and life is pretty much the same only so much more uncertain now. He isn't back at school yet, he's not emotionally ready yet. Maybe in a month, we will see. Good to hear Rio was back doing the things boys should be doing, hopefully Jared won't be too far off that. His back is slowely getting better, although his spine is -4.9 to what it should be (denseness), apparently due to the cml. I wonder if anyone else has had this problem? Good luck to you all!
Thank you so much for doing this - I feel sure that the site will be well-used. I certainly wont desert THIS site though, because there is so much wisdom and knowledge to be shared here. But somewhere where parents/carers of children with CML can give each other support and encouragement will be wonderful - you just have to look at the posts above for proof of that!
Thinking of you all on this sunny Saturday!
Much love, kestrel xx
My son was diagnosed nearly a year ago and it was only discovered when his upper arm swelled up, I thought he had injured it on the bouncy castle but the hospital could find nothing on xrays. He had a blood test and less than 3 hours later i was told to take him to bristol childrens hospital, oncology ward for a bone marrow biopsy the following day.As a nurse several moons ago i was aware what the drs weren't saying and when diagnosis was confirmed the following day i was stunned to say the least. My son is very active,never ill and in the first few days he had so many blood tests and needles poking him he didn't know which way to go. Leaflets given by the hospital were no help because they only spoke about adults. As a single parent i struggle at times to take everything in, with his illness, working ,looking after a teenager that if anyone would like to chat or give me some support i would be very grateful.I was interested about the comments on skin rash as my son has this on his face.
I jumped when I read that your son is being treated at BCH! That is where we go and I had heard that there were only about 2 current children with CML being treated there. They are probably our 2! If you would like to chat about experiences etc do contact me on firstname.lastname@example.org - it would be good to meet up there sometime perhaps?
All the very best to you and your son
just a quick note to see how your son is doing. Is he back at school yet? How is the back pain?
My son suffered very painful feet and legs in the early days of his glivec treatment, in fact it carried on 6 months into his treatment, although it did become less of a problem as time went on.
The side effects he suffers now are Orbital swelling, and a skin rash on his face and upper arms.
he hates talking about his CML, so i won't even try to suggest my son and your son should communicate, though I believe it would be a very good thing.
How are your sons bloods now?
No, my son isn't back at school yet, hoping to phase him back in from next week, then it will be almost 3 months since diagnosis. His back is getting slowly better, he is still quite lethargic and feels sick sometimes. How old is your son? Jared seems ok with having cml, although it scares him sometimes. Having just turned 14, I wonder what his future is going to be but I try and take one day at a time and try not to think too much! All the best to you and your son Mary.
I know Mary has registered with Jayne's new site - I think that makes 5 of us so far, but we're getting going! - have you got the details? It's childrenwithcml.org.uk.
Its good that Jared is starting to feel better. Does he take anything for the sickness? Rio used to have Ondansetron, but he stopped taking it after a few weeks and very rarely feels sick now, so hopefully it will improve for Jared too. Does he take his Glivec with a meal and plenty of water? That seems to help a lot. We very much functioned 'one day at a time' to begin with, but as Rio started to feel better we slowly started to make plans again. We had a short break at a holiday centre with a great indoor pool in the late Autumn last year which was about 4 months after diagnosis (November here is pretty chilly!), and this year we went away on holiday to France for 10 days. When Rio was first diagnosed I couldn't imagine being able to take him to the shops, let alone go on holiday! Life is nearly normal - and Im sure it will be for your famliy too. Is Jared looking forward to going back to school - if not for the work, at least to see his mates?!Thinking of you, kestrel xx
I can identify with what you say about your son not wanting to talk about cml - Rio hates talking about it too, so we try to keep it all very low key. I sometimes think he would benefit a lot from talking to other kids with cml, but he's not keen. He had a brief flurry of interest in this website and made a few postings last year, but he's more intersted in Bebo and MSN Messenger now! I guess its because he doesnt actually FEEL ill, so I should be grateful for that....
All the best, kestrel xx
Our son who is nearly 3 years old was diagnosed with CML 3 weeks ago. He is a fit and healthy toddler and I only took him to the doctor because my mum noticed he had a firm tummy. I now know this was his enlarged spleen. He went to hospital with a white cell count in the 600's and it is now 215. I don't know any other measurements (still learning everything). He taking 200mg glivec daily. Thankfully, he seems to tolerate it well although he refused to take it in hospital so we had to put in a nasogastric tube for him to have the tablets.
I want to learn more, although I am also fearful of what I might find out.
My thoughts go out to all the other people dealing with cml and their carers.