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2 Year Old Son with CML chronic phase- post from another thread

I have posted this here as Michelle had joined another much older thread on children with CML.

Submitted by Michelle H on Thu, 2008-09-25

Hello all,

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.

Dear Michelle,
I am so sorry to hear that your little boy has been diagnosed with CML. He is so young! However, you will learn that Glivec has saved many lives and I am sure your child will continue to respond. Where is he being treated?
Please do make sure you post on the current page of this forum as your post might not be read by many others if it is on an 'old' discussion thread.
If you notice that Tad in her post below is also dealing with her son's diagnosis and is hoping to talk to other parents/carers in the same situation.
Julie is also in the same postion, as her son of 11 has CML.

Please continue to update us on his progress and do not hesitate to ask for support and advice at what must be a very challenging and difficult time for you.

my very best wishes,
Sandy

Hello Michelle,

Im so sorry to hear that your little boy has been diagnosed with CML. Im also sorry that I seem to have missed your post on the Children with CML website.

It does seem so young to be diagnosed with CML. My Son was diagnosed when he was 15, and like your Son his White Blood Count was in the 600's.

It must be difficult to get your little one to take his Glivec when he refuses. I have a 2 year old and I know what its like trying to force medicine down them when they dont want it - it usually ends up all of you doesnt it.

If you need any help, advice or support - as Sandy has already said, please dont hesitate to ask - either here or on the Children with CML site. There are many people who will respond to you Im sure.

Much love

Jayne

Hi Michelle,

I'm sorry to hear about your son's diagnosis. I can relate to your concerns, fears, and even confusion.

My son, Ben, was diagnosed with CML in May 2008. He is 10 years old. He has responded well to Gleevec.

I can only offer limited advice at this time since I am very new here too. I would suggest that you learn as much as possible about treatments and options - and consult with as many experts as possible.

My son was recently switched from Gleevec to Dasatinib since his oncologist felt that his response was not good enough at 3 1/2 months (Ben went from 86.4% Ph+ to 3.6% Ph+.)

I just didn't feel right about the doctor's determination. So I immediately reached out to other experts. Dr. Brian Druker (the guy who invented the precursor to Gleevec) emailed me only today and said that my son's response to Gleevec was "fantastic."

So, now I'm preparing a trip to see Dr. Druker for more information.

Not certain about what I'll do, but I know that I can make better choices with greater information. This disease is greatly researched because it's one of the few leukemias with distinct stages. There are changes in the scientific and medical communities all the time. Keep current.

I'm also going to have a bmt consult. Right now, that's considered the only real "cure" for CML. I don't know when or if my son will need a bmt, but I'll be best prepared for it so that I can best prepare my little boy.

Allow yourself to become the foremost expert with respect to your child. Always listen and learn. And of course, love, love, love.

I wish you well.

Regards
TAD

Hi Sandy,

I was told in hospital that CML in children was rare and am now starting to realise just how rare. I will post to TAD and Julie. Does anyone know of any other toddlers with CML?

We have an appointment at the hospital tomorrow and while we are there, they want the family to be tested for BMT compatibility (is that right?). Will be a challenge to coax my 4 1/2 daughter into it. Apparently the BMT test is just incase it's ever needed in the future and that it can be a lengthy process.

You are right Sandy that it is difficult time however we are trying to keep positive and pray that glivec works with minimal side effects. Our stay in hospital was an awakening to what some families are going through with their beautiful children.

Will keep in contact.

Kind regards
Michelle

Hi Jayne,

Thank you for your reply and completing my registration for the Children with CML support.

I'm hoping the white cell count will be down again tomorrow.

I don't know when we will take out the nasogastric. When could you be confident a 2 or 3 year would take 2 tablets for you every day? It doesn't seem to bother him yet but we'll have to see how he goes in summer when he wants to go swimming.

I've been reading a little about your son's journey. I don't understand all of the complications he had but it sounds wonderful news on how he is now going. Best wishes to you and your family.

Kind regards
Michelle

Hi Tadlaw,

Im so sorry to hear that Ben has been diagnosed with CML.

I think that what you are doing at the moment is exactly the right thing to do. Take as much advice from as many different people as possible. I think that because CML in children is such a rare thing (although becoming worryingly more common), the Dr's who generally treat children arent armed with enough information and I know, from my own experience, very often dont have a set protocol to follow so are a little bit unsure themselves on how to proceed. They very often, nearly always, need to consult with adult Dr's to decide on which is the best treatment.

I also think the fact that you have had Dr Druker telling you that this is a very good response is fantastic. I would definately seek 2nd, 3rd, 4th opinions. Dont be afraid to ask the Dr's direct questions about your worries, concerns etc.

Sending you much love and lots of luck.

Jayne xx p.s. do join in the forums on the children with cml website.

Hi Tad,

Sorry to hear about Ben. It must be incredibly hard supporting Ben through the various procedures and helping him deal with this emotionally.

If an expert in the field is happy with his results then that is great news. I know I'm living week by week for Kayne's next blood results and that is only the white cell counts still. Does the waiting get any easie? I wasn't aware of Dr Druker, I will research his work.

You have encouraged me to look into things a little more than the information that we are provided with by our doctor. We had an appointment today and although it provides the opportunity to examine Kayne and find out how his bloods are going, there isn't the time to give us any more information. I want to know about the various trends, treatments, etc. I've found a couple of seminars that are occurring in the Oct and Nov so hopefully they'll be a good start, together with what I can find on the internet. The research on the internet is scaring me when I've found most children with CML have had or are planning a bone morrow transparent. My husband, 4 1/2 year old daughter, Kayne and I had the blood tests today for tissue testing. I hope that Shaelyn is a match for Kayne but also hope we never need it.

I wish Ben, you and the rest of your family the best with his treatment and results.

Kindest regards
Michelle

Cell count down to 82.3. Relief for another week.