Fran,
My Onc. wont let me lower my dosage either and I have been at zero twice. It is maddening. He told me I would have to be on medication for the rest of my life no matter how long I was in remission or at 0. I just dont understand that. I asked him once wasnt it like other cancers that if you stayed cancer free for five years you were cured and he said NO. It just still seems unreal that at some point I wont be able to quit taking medication.I feel for Jonathan my 16 year old is barely an inch taller then me, I am five five and for sveral years we didnt think he would get that tall. He would get sooo upset because the other kids teased him about being small. So I understand and hope that things will get easier for Jonathan......just remind him that good things come in small packages!
Hugs,
Katy
--
xanga.com/katybug45
xanga.com/katybug45
-------------- Original message --------------
From: "franw/hope" <[EMAIL PROTECTED]>
>
> Hi everyone,
> I was so thankful for the news about the findings of folks phosphorous
> levels decreasing and deficient bone growth that it threw up a red flag
> for our 12 year old that has not grown in 3 yrs.
> Jonathan was dx 10/03 and also has had a femur head had deteriorate
> and had it put back into place with hardware to grow back rounded. This
> was in 3/05. He is having this hardware removed a year and 5 months
> later (sept 7th). The femur had grown back. We are very Thankful.
> Although doc odered a bone density test. We rec'd the results today.
> Jonathan is 3 years delayed in his bone growth and is also osteopedic.
>
> So off to a Endocrinologist the 20th. With hopes that there is some
&g t; help.
> Jonathan has wondered around his friends why he is still the size of a
> 9 yr old. It breaks our hearts to see his face of discouragement.
> Good news though on top of this. Jonathan's PCR came back
> 3/100,000. That is the lowest it has ever been. We have asked about
> lowering his dosage..but the answer still remains no.
>
> God Bless each one of you...
> fran
> son: Jonathan
> age 12
> dx 10/03 600mg
>
>
>
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