sweetpickleNO@SPAMknology.net wrote :

Oh, that poor little boy! I'll keep him in my prayers. Thanks for
keeping us posted.

Nell

On May 10, 1:45 pm, <sweetpickl...@SPAMknology.net> wrote:

Gwen
You know I have a feeling that this is going to end up better than we
think.  Tracie has an extraordinary mom-the perfect one I think, to
exemplify Mother's day.  Prayers will continue

m

it's so hard to imagine this little guy going through all of this. my
prayers are with him and his family.

diane

Sent: Thursday, May 08, 2008 4:19 PM
Subject: update on Jackson

     Hello everyone.  We returned late last night after a day at the
Rheumatology Clinic of Children's Hospital in Birmingham.  Jackson saw a new
doctor who confirmed that he definitely has a classic case of Juvenile
Dermatomyositis, an autoimmune disorder which affects both the skin and the
muscles.  There is currently no cure for this disease and we are looking at
life long treatment.

     The doctor feels that Jackson's case is moderate to serious, but we
are hoping that with aggressive treatment we may see improvements.  The
treatments consist of high levels of steroid which Jackson takes morning and
night, shots which I will be giving him at home weekly, and a monthly visit
to Children's Hospital for IVIG, which is an infusion (IV) treatment that
takes 8 hours at a time.  The doctor hopes that if we are diligent with
these treatments that it may allow them to decrease the dosage of prednisone
steroid that Jackson has to take.  Long term doses of this steroid often
cause alot of weight gain, irritability, a decrease in bone density and can
stunt the growth, so we are praying that this can be decreased as soon as
possible.

     Dermatomyositis causes alot of muscle weakness in Jackson's neck,
abdominals, arm, and leg muscles.  We will begin physical therapy soon,
although it is not expected to cause a regain in his strength.  His strength
may improve down the road if the immune system is stabilized.  Usually the
expected course for these children is that in 2-3 years, the medication may
be lessened, until the next flare-up occurs and then the cycle begins again.
The doctor did say that there are a small number of cases who do go into
remission after 2-3 years with little to no symptoms from then on.  We are
certainly praying that it will be that way with Jackson.  One of the biggest
prayer requests we have is that Jackson will not experience any permanent
disabilities because of this as many children do when their muscles become
frozen from unuse and lack of strength.  The physical therapy is simply to
try to keep the mobility that Jackson has.

     Please pray as I begin to give his shots each week.  Jackson has an
enormous fear of needles, and this medication is a chemotherapy medicine
which often has difficult side effects for several days following, including
nausea and fatigue.  Also, please pray for Robert as he will not be able to
return from Romania most likely until late July.  It is quite difficult for
him to be there knowing all that is going on here.

     This is hard news for any parent to hear, and we are very emotional
although we are full of faith.  We are realizing that God's expectations and
plans may be very different for Jackson than what most parents usually dream
of for their children.  However, when I look back at everything that I have
ever loved about my son, it has never been his stunning physical abilities
or his perfect physique.  He is one of the smartest 3 year olds I know, with
an amazing way of bringing people together.  He is charismatic and funny,
and he doesn't let anything stop him when he wants to do something.  Those
are simply things that this disease cannot steal from him, and so I trust
that God will continue to use those assetts of Jackson's for His glory.  I
know that God has big plans for our sweet boy.

     Thank you all for the constant encouragement, e-mails, phone calls,
gifts, etc.  You have really sustained us in a dark time.  I will be without
internet for a bit as we reestabilsh cable and things with our home in
Montgomery, but as soon as I can, I promise to respond and read each and
every e-mail that you send.  Thank you, and just please keep us in your
prayers.

     Love, Tracie Griggs

it sounds as though jackson is in great hands, on all counts.  it's sad that
he has to go through all of this.  some kids are amazingly resilient and the
description of him by his mom sounds to me like he's going to be one of
them.  my healing thoughts and prayers continue for him and his family.

kate

Remember that prednisone in certain conditions such as this and childhood
leukemia, heart problems etc is a "friend" not a foe.  I have known many
children that have been through leukemia and taken prednisone.  The worst
side effect of it for them has hit their mother's and father's pocketbook.
To quote a dear friend's son "You are on prednisone Kelly right?  Does the
light on your fridge ever go out - my mom says ours never does and it is a
signal from god that I am doing well."  He was 5 when he said that.  The
eating was a side effect, he could use the extra weight and it helped keep
his food down.

Remember that although their is no "cure", there are incredible meds out
there for life long treatments and they are getting better all the time.
Eventually he will probably be off all prednisone and hopefully the IVIG
treatments will work miracles for him.  At his age the treatments will
become routine much earlier and hopefully he can go through life accepting
these like some children might "put on glasses".  This is what I hope for
him.  It may take a while and will definitely be harder on you than him.
There are many on this group that can help you along the way - they have had
RA since young and know some of the hard stuff.  Keep your faith in god,
accept all help, reach out to anyone and always about your fears, your hopes
and your dreams.  Always encourage Jackson to talk to his doctor's and
yourself and never let him feel there is nowhere to go - all of us will tell
you there is always another med or treatment coming down the tube and they
are better and better.  Soon these will help unlock the autoimmune disorders
and help find a cure!  Each time a med works the scientists find out a
little more about our bodies - in a way that is part of what fuels the high
costs of these drugs - this helps develop the next generation and helps
unlock a few more mysteries.

My heart goes out to you and I am not ignoring your fears in any way.  I am
just telling you it is okay to be scared but also be wise.  Respect the meds
and their side effects but don't let fears cripple you.  That fear will pass
to Jackson.  Get all information but don't ignore the treatments - you don't
want problems down the line and early treatment will stop those in the
tracks in most autoimmune diseases.  How lucky you are to have early
diagnosis and such wonderful doctors and hospitals.

My prayers will continue.  For you, your family, Jackson and those wonderful
doctors walking right beside you.

Kelly in BC Canada.

prayers still coming that way. This is so sad.

I will be hoping things go well with Jackson's treatment and keeping
the family in my thoughts.

debbie m.

sweetpickl...@spamknology.net wrote:

poor little guy and it has to be incredibly stressful for his family.  it
must be killing the father to be so far away right now.  They will all remain
in my prayers.  Thank goodness they have their faith to sustain them and
appear to have a well-adjusted attitude to whatever will be.  Wise parents
who will fight for him are the best gift for little Jackson right now.

I used to fear and hate needles, but matured to the point of being able to
inject myself.  Judging by the email from his mom, I think Jackson, with his
mother's support, will learn to accept the needles that will help him feel
better and, God willing, may even cure him.

Oh, Tracie, I was so saddened to hear about Jackson.  I have been involved
with some other things, so didn't get to ASA until today.  Prayers and hugs
coming as fast as they can.  Remember they are discovering all sorts of new
things for different diseases and conditions all the time, so remember we
are all praying for you and Jackson.  My great nephew was discovered with
leukemia at the age of three (2 years ago) and, like some one said, he soon
accepted the treatments as part of life and continued to be his own cheerful
self.  I will remember you and yours in all my prayers.  God bless.

PS to my last message.  The website of http://www.caringbridge.org/  will be
an excellent place to keep us all informed.  I believe some one else uses
it, too, as well as my niece.  We sign up with our email and she just puts
the latest info on the site, which then automatically notifies everybody,
who has listed their email address, of the latest update.  Since my niece
has a seven year old and a two year old, as well as Nate, it helps her a
lot.  She also can post pictures there.