Update on Trenton (Rodeo Kid #2): 10-4-2012 by Mena Noll
(Dreaming of Three will be revealing a new Christmas Tshirt, to benefit the Noll's during this difficult time-stay tuned.)
Trenton's MRI results Monday showed that although the
tumor is still stable in size it has once again become enhanced. In the past
enhanced has lead to growth. He has been showing more symptoms lately that we
are unsure if they are tumor related. They would like to start scanning more
often to monitor growth. After much discussion with the nurse I asked her that
we do what is best for Trenton at this point. As you all know there is no room
for growth. Growth will mean Trenton will be completely blind, growth will mean
a loss of speech, a loss of movement. Two weeks ago he began to stutter more, 1
week ago he began to drag his leg. My suggestion to her was why should he wait
to see how much more he looses. Start thinking, start researching NOW other
options, it was then the long pause came that suggested there were no other
options. The doctors currently have no other alternative because of the amount
of treatment he has been given. They say he doesn't qualify for other options
at this point. There is always something, we will just have to find it is what
goes through my head. She kindly said she will take his case to the tumor board
for discussion to see what can be found and do all she can. I trust that she
will, she has been fighting for us for everything since we arrived in
NC.
While dealing with this
news this week I also am dealing with the fact that Trenton no longer has full
medical coverage. When we made the move we failed to realize that PA and NC do
not follow the same Medicaid policy. We started the process months ago when we
got here and for lack of better words are dealing with idiots. Obama signed
that no child be denied medical insurance that has cancer, what he didn't do is
make it available to ALL children. If you are the average American you are
either screwed or must jump through hoops like we are doing in order to obtain
it.
As you can imagine
frustration is all around me this week. My job is to be a Mom and take care of
my children. Every morning I wake up and do my job, so my question is why is it
so difficult for others to do their job. Doctors need to find a cure and make
it available to all, and politicians need to make sure all are able to
financially obtain it through insurance and insurance that we pay a ridiculous
amount for needs to cover it! No child should endure this suffering and no
family should be made to do what we are doing at a time like this to make sure
our son can get it. We are at a point where even if there was a cure our
insurance wouldn't cover it. Trust me this mamma is on the phone and I will get
it covered and they will have other options :)
So this moment I sit here
and question the system, the doctors, all of it. Someday I will battle for all
children with cancer that families do not endure these struggles, but today I am
just battling for Trenton. At this moment we will continue his current course of
treatment and monitor the next few weeks for symptoms. The last three years
straight October has brought nothing but bad news, but for the last three years
we have placed Trenton's illness in God's hands and Trenton has prevailed. When
they told us last October that we had weeks left we prevailed through prayer.
The last three months have been a dream and if God willing we will enjoy more
time. Trenton has come to North Carolina and affected so many in such a short
period of time. He has a way of reaching out and touching so many hearts and
trust me it was meant to be for him to come here. His aide at school told me
she prayed for God to send her a case that would help change her life, and then
she cried as she said Trenton was the answer to that prayer. He is truly a
blessing.
I have to share with you
the story of Trenton's hellos. Everywhere we go, ( I mean everywhere!) he says
hello to each and every person (EVERY PERSON). Bryce was upset by this recently
because of the amount of time it took to get through the grocery store as we
waited on Trenton to chat to each person. Bryce said, " Trenton do you really
have to say hello to EVERYONE!" Trenton's reply was simple, "It is nice to say
Hello so yes I do have to say it, God is in my Heart!". I thought about it that
evening thinking of all the faces and smiles of people when this little boy
waves and says his simple hello. Who knows how their day was before that
pleasant exchange. It might have been that Hello that changed their day. Then
I heard it straight from an elderly man's mouth, "Thank you son, you just made
my day!" Lesson learned again from my son. Stop, take the time and love they
neighbor, all of them!
Thank you
all for your continued support and prayers and no matter the distance we feel
blessed to have so many of you in our lives. Mena
Noll
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