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|  Message 296  |
|  Ardith Hinton to Mark Hofmann  |
|  Childhood Leukemia  |
|  03 Jun 14 23:52:55  |
 
Hi, Mark! Recently you wrote in a message to All:
MH> This past year has been especially difficult with
MH> regards to medical related things with two of my kids.
MH> First, we completed the long awaited Hirschsprung's
MH> corrective surgery. This involved multiple operations
MH> over a period of a few months. All went excellent and
MH> that has been completed.
Ah, success at last! Thanks for the update.... :-)
MH> Second, was my daughter's herniated disc back in March.
MH> That operation went great and that has been resolved.
So you made it over another hurdle. But then....
MH> Third, on April 1st, my son (still getting used to being
MH> Hirschsprung's free) was diagnosed was Leukemia (B-ALL).
MH> That was a huge shock to us - especially since he has
MH> already been through more medical procedures than many
MH> gown adults.
You may remember our daughter had ALL when she was three.
The bad news is that kids with Down's syndrome have a higher risk of
developing leukemia than "typical" kids do.
The good news, however, is that ALL in young children is the easiest
form of leukemia to cure... or so we were told years ago. And we heard from a
number of medical professionals that *kids with DS* do particularly well. :-)
MH> He has been responding great to the treatment and was in
MH> total remission on day 29. It is a long treatment plan -
MH> 7 months of typically, weekly treatments/visits. Followed
MH> by once every 12 weeks for several years in the maintenance
MH> phase.
Yes, it was a long haul for us too. I understand the treatment is a
bit different nowadays. Is he getting any medications at home?
MH> Taking things day by day and week by week.
I learned about that from the kids in the oncology ward. The
younger ones lived in the moment... if they threw up, e.g., they'd be fine
again almost immediately afterwards & wouldn't expect a recurrence. OTOH the
nurses told me teenagers often began throwing up as soon as they set foot in
the ward.... ;-)
MH> There are good days and not so good ones, but overall
MH> things have been really good and heading in the right
MH> direction.
Glad to hear it! I think your positive attitude goes a long way
too. Kids, especially the young ones, pick up on their parents' feelings
intuitively
... but many of them seem to lose the ability as they develop language. It
may be just as well in situations like this to have a kid who takes somewhat
longer than average to reach certain milestones. If you believe things are
heading in the right direction, your son probably will. And the not-so-good
days are much easier to deal with if one can remain focused on one's long term
goals.... :-)
--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)
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