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Hi ,

Can't speak for anyone else but yes ... that's exactly what we're doing

:) I'm so happy the children are finally out of school! My daughter goes

back early this year, July 27th, so we really have to enjoy it while we

can :)

At my son's most recent rheumatology appt the doctor said he looks

better than she's ever seen him, in the last 5 years. One elbow and his

right big toe are all that seem to be bothering him and not too badly,

at all. Unfortunately, because he was a little fussy about the MTX by

injection all of a sudden, she wanted to hold off on reducing the

prednisone for now. Last week he took his MTX dose orally, today he had

his regularly scheduled shot. Haven't noticed yet that anything was

amiss. He seems to be fine. But he has the pills for next week ... again

.... and then hopefully, we'll just stick with the injections, which seem

to work a lot better for him.

Hope you enjoy the summer, too :)

Aloha,

Georgina

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  • 8 years later...
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Hello Sandi

I am always sad to hear of another 'child' diagnosis.... and my heart goes out

to you too as I know what you are going through.

My 25 year old son was diagnosed with CML just over three years ago. Just last

week he got married and is now on his way back from honeymoon. This past month

he said that his tiredness has got much easier and thankfully he is no longer

cold all the time either. I know that must sound like a long time - three years

to get to this point, but it has happened faster for others. From what I read,

the side effects can come and go with time.

learned to take time out of his day - even just the odd 5 minutes for a

quick slow-down and snooze before going on again. Often he just has no option

but to take it easy, but he has adjusted and takes it in his stride these

days.......especially now that its not as bad right now.

Eating well played a good part in his adjustments, as well as going to bed

really early for the first two years. I used to joke that all my kids are

asleep by 9.30pm and old mom is up and awake till the wee hours of the

morning...

Hang in there Sandi - hopefully it will get easier as time goes on - for her and

for you too. Please feel free to email me anytime you need a shoulder to yell

at or to share :) My email is ibannie @ comcast.net. Also, feel free to read

about my feelings regarding 's cml on my blog - I forget everything I

wrote in the early days, and am really thankful that these days are much

smoother.

love and light

Annie

http://livingwithcml.blogspot.com

>

> Hi.

> My daughter was diagnosed with CML in Feb.   She has a 22 month old, active

baby.   She continues to work and take care of the baby and is extremely

fatigued.  I do the food shopping and go every night to take care of the baby so

she can eat and take her medication.  The days are like roller coasters.  Are

there any parents of children with CML that can offer me suggestions?

> Sandi

>

>

>

>

>

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