Kids with Gliomas
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Welcome to our site we created to keep everyone updated about our daughter,
Rabekah.
Scroll down to read previous postings.
Add your email address to the left and click OK, so you can be notified when we post new info and to
link back here. <<========
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Latest
News: Authoring Editing
April 27, 2009
Hi All,
Just an update to let you know the Ball was a
great success for it's very first year. Though we
only had 76 people attend we are proud to announce
we are making a Donation to the Rabekah's Rainbow
Fund in the amount of 3,011.86. Yay! Glenn and I
are so thrilled with how amazing the night was and
can't wait to do it again next year. Thank you to
all who attended and for those who could not
attend but made donations. We could not have done
this without you.
On another note, I was reading this morning in my
Everyday thoughts book and wanted to share
May you have joy after your trials, like a Rainbow
following a storm.
Even now she continues to shine hope, faith and
love on all of us here. God's promise is almighty
and everlasting.
Thank you all again, with much love.
The Hicks Family
April 11, 2009
Dear Friends
Due to a small amount of tickets sold for the
Masquerade Ball we have made it a Charity
Evening with dressy/casual attire or whatever
you choose to wear! We are also opening it up to
all ages. Tickets are still for sale at
patientsweb.org/rabekah. They will not be sold
at the door, final count needs to be in by
thurday April 16th. The evening will be a social
event with music, dancing, food, cash bar and
raffles.
We do apologize for the inconvenience.
Hope to see you there.
If you wish to have a refund due to this change
please email us through the website and we will
be happy to do so.
Thanks,
The Hicks Family
April 7, 2009
Hi Everyone,
Just a reminder that ticket sales end this
friday! Final head count has to be in by
saturday morning. Hurry up and get your
tickets!!!
March 31, 2009
Just a reminder, Tickets for the Charity Ball
can now be purchased on Bekah's Website through
paypal by credit or debit! Tickets sales will
end on April 10th.
March 20, 2009
Hi Everyone,
Just letting you know we now have a link on this
page for our Masquerade Charity Ball with all
the event info and you can also purchase tickets
there as well. Be sure to check it out!!!!
Hope to see you all there.
Much Love,
The Hicks Family
March 11, 2009
It's hard to believe that an entire year has
passed already. Glenn and I often say that it
feels like forever ago since we held her in our
arms but still hurts as if it were only
yesterday that she passed.
We did gather at her grave yesterday for a small
intimate memorial which was truly beautiful.
Once again we entered the site without trouble,
the weather was spectacular and we read the
stone and for the first time for some family,
saw the image on the stone in person. Glenn and
I each wrote a little something to share on her
behalf, we all shared in song, another Rainbow
Bouquet of balloons were sent off and it was
just perfect.
In the afternoon Glenn, myself our Girls and a
few other family and friends made way up to the
Hospital to gather in the PICU for our annual In
Honor of Rabekah Day. We were able to see some
of the nurses and Doctors we hadn't seen in a
year. Glenn and I had recently purchased 3 small
slushy machines and donated them to the Hospital
as part of the endowment agreement that every
year on March 10th we will gather at 4pm to
honor her memory and offer free slushy's to the
entire 8th floor.
We also had another surprise for the 8th
floor,,, I was able to purchase a wig and a gown
so that I could dress up like Princess Arial and
visit all the children on the floor. I had a few
helpers that were busy making slushy's and
delivering them as we went from room to room
visiting and offering face painting and fake
tattoo's. I just have to say that on such an
incredibly sad day for both myself and Glenn,
that was the most wonderful experience ever.
Just to walk into a room and see another child's
face light up in the midst of whatever illness
they are fighting, there really are no words. I
know that Rabekah would have loved a visit from
her Princess and to be able to give back and
know that for 5 minutes we were able to reach
out to another and share a smile together,
certainly makes all that we have been through a
little easier to understand. The entire staff on
the 8th floor as well as the staff of Health
care Charities are just such wonderful people.
Without all of them this day for our family
wouldn't have been as perfect as it was. My
friend was able to take some great shots of us
all at the Hospital and we hope to have them up
soon for everyone to see! A million Thank yous
to everyone for your thoughts and prayers of
support that helped guide our family through
this painful time.
We love each and every one of you so very much,
The Hicks Family
March 2, 2009
We are proud to announce our:
1st Annual Masquerade Charity Ball
Saturday, April 18th 2009
8:00pm - Midnight
At Spectacular Event Center
395 Griffin Road, Bangor
Formal Attire with Mask is required
Ages 18 and Up
Hors D' oeuvres
Cash Bar, Music, Dancing
Contests, Raffles and much more...
Come enjoy an unforgettable night in Support of
Rabekah's Rainbow Endowmnet Fund
established in memory of Rabekah Hicks
to help support children at EMMC who have been
diagnosed with a Terminal Illness.
This is a ticket only event and must be
purchased in advance and presented at the door
upon arrival for admittance.
Tickets are $25.00 each and can be purchased now
by calling 270-1104 or by mailing your check
(made payable to Rabekah Fund)along with number
of tickets desired and your return address to
Shannon Hicks
Attn: Tickets
25 Loon Lane
Frenchtown TWP, Maine 04441
Ticket sales end on April 9th and will not be
sold at the door!
If you cannot attend but wish to make a Donation
you may send it to the address above and write
the word Donation in the memo line of your check
or money order.
If you wish to Donate a Basket for Raffle or
wish to Sponsor this Event please email us
through the link above.
Thank you all for your Support and we hope to
see you at the Ball!
March 2, 2009
Imagine being locked in your own body. Imagine
not being able to speak, walk on your own, see,
or even swallow your own food; while having
complete cognitive abilities and independent
thought. Imagine waking up every morning and
experiencing the sensation of losing the use of
another finger, toe or limb at a pace that shuts
down your entire body within weeks. You are
trapped, without hope or without a lifeline to
the world around you. Now imagine you are just 6
years old.
Brainstem glioma, otherwise known as DIPG, is a
disease which affects the most innocent of all
victims – children who just want to grow up and
dream. And just at the time that they are
planning their first day of kindergarten, it
hits without warning and without mercy. In the
beginning it appears to be a migraine, loss of
balance or even slurred speech. Within hours or
days, the effects become more noticeable as the
child becomes paralyzed and unable to eat. Soon,
the glioma will restrict vision, ability to talk
and sometimes breathing. By the time treatment
is sought, it may already be too late. Even
those that discover it early are frequently left
without options. This is because there is no
cure.
Brainstem glioma is just as elusive as it is
deadly. Even today with superior advances in
cancer treatment, brain stem glioma prognosis is
regarded openly by experts as dismal in
medical articles and it is recommended that
these young patients receive advanced and
experimental treatments due to the severity of
the disease.
DIPG (diffuse intrinsic pontine glioma) is a
disease which strikes at the heart of childhood
and it is a disease in desperate need of a cure.
And at the same time, there may be no better
place to start the search. Lung cancer has a
survival rate of 80% if caught in the early
stages to less than 5% if caught in stage 5.
Breast cancer has typically an 80-90% survival
rate. Leukemia has a 48% survival rate. At the
same time less than 10% of DIPG children will
live longer than 18 months from diagnosis.
Survival is even more rare.
DIPG affects the pons portion of the brainstem,
rendering nervous system function impossible.
Symptoms include double vision, inability to
close the eyelids completely, dropping one side
of the face, and difficulty chewing and
swallowing. Unfortunately these symptoms usually
worsen rapidly because the tumor is rapidly
growing.
DIPG, for all its difficulties, presents an
opportunity for all forms of cancer. It is one
of the most resistant of all cancers to
chemotherapy treatments, it affects primarily
children that have historically led innovations
in many other forms of cancer, and with
a dismal prognosis, alternatives are few. Put
together, these obstacles offer researchers a
chance to revolutionize cancer research and
prevention. It is even suggested that a cure to
DIPG might result in a cure for almost every
other type of cancer. For this reason, the cure
starts now.
It's up to you...
90% of children with DIPG cancer are left
without options. There is no established
treatment and there are no cures. Unlike many
other forms of cancer, DIPG children must move
from experimental protocol to experimental
protocol in the hopes that this is “the one”.
But sadly, with every experimental option
costing upwards of $250,000 and taking two years
to develop, there are not many options. And when
you consider that there are less than 100 cases
per year, it isn’t economically worthwhile for
most drugs to be specifically developed for
DIPG. Yet, DIPG may in fact provide the best
hope for a cure for all cancers. Unlike other
forms of cancers, DIPG affects primarily
children who may be able to withstand more drug
types and concentrations than most adults. Also,
unlike other types of cancer, most victims of
DIPG don’t consider the impact of side effects
into their decision to pursue treatment. The
cure starts here...
Help today with a donation to
www.thecurestartsnow.org , or show your support
at a regional event for CSN. Our goal is the
establishment of one protocol per year
($250,000) and we can use all the help we can
get. CSN is an IRS approved non-profit charity
with a staff of 100% volunteers, thus ensuring
your donation goes where it's needed most.
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