Caution long post ahead! This is what happens
when your mind races and you can't sleep...
Sitting here waiting for oncology to call and
tell us our "game plan" and we literally feel like time is standing
still. We just want to know what to do. I think for every parent all you ever
want to do is help your child. When you see them cry you want to wipe away
their tears. When you see them hurt you want to kiss it all better. You never
want them to suffer or feel an ounce of pain. One of the hardest things we have
ever done is to sit and wait and rely on the experiences and knowledge of other
people. We have no control... We are at the mercy of people we just met. We
have no choice but to put all of our trust and faith in them. Don't get us
wrong- we know without a shadow of a doubt that Rylie is in very capable hands.
All of the doctors at Primary Children's Hospital are amazing and we know they
are weighing every option and only want to do what is best for Rylie BUT
nothing will ever take away a parents need to help their child and in order for
us to do that have to wait. But I tell ya the waiting is pure torture. It can
literally make you physically sick. Over the last few weeks we have literally
weighed every option. We have played out each scenario asking all of the
questions…all of the who, what, where, when, and whys. There are pros and cons
with every scenario and to be honest I don't think we know what the best option
is. We either jump into treating the tumor, which will mean our baby will be
put through an extensive chemo regiment or we wait and see what the tumor
does...
Rylie has an Optic Nerve Glioma. An Optic Nerve
Glioma is a tumor of the optic nerve (the nerve that connect your eyes to your
brain). Essentially these tumors are classified as brain tumors. These tumors,
which are uncommon, usually appear in childhood and are first noticed because
of poor or failing vision or a bulging of the eye. Rylie's ophthalmologist
first noticed the bulge in her eye which is why we are here today. Treatment
for Optic Nerve Glioma does typically involve chemo, radiation, and/or surgery.
Here is what we know and the options Rylie's doctors are reviewing...
Treatment Options:
(1) The first treatment option will be chemo.
There are currently 5-6 different chemo regiments we can try to get rid of the
tumor. The first chemo they will try on Rylie has a very high success rate and
they are hopeful she would respond well and we can just go through one chemo
treatment and be done. If that is not successful there are more chemotherapy
options and if we need to look into those we will be ready. The down side to
chemo besides the obvious there can be some potential developmental risks for
children under age 3 so doctor’s have to proceed carefully.
(2). Radiation. This is an option they will
only try after every possible chemotherapy treatment has been exhausted. This
will be our last ditch effort to get rid of the tumor--- Radiation comes with
some major risks for Rylie so her doctors don't even want to look at this as an
option unless we absolutely have to.
(3). Surgery. This will literally be our final
option. Why? Performing surgery will literally mean complete vision loss for
Rylie. With these types of tumor they are not attached to the optic nerve, they
are in the optic nerve so the only way to remove the tumor would be to remove
the nerve there for leaving Rylie blind. Our oncologist firmly believes this
will never be an option we will have to look into. In her 21 years or treating
NF patients she has only had to do surgery once! Those are some pretty good
odds however it is an option and although this option terrifies us and keeps us
awake at night we feel a HUGE sense of relief knowing our chances of ever
having to cross "that" bridge will be slim to none.
So why the wait? Why didn't we just jump into
immediate treatment? Unfortunately the answer is complicated. As Rylie's
doctor's have explained to us Optic Nerve Glioma's are very complex tumors.
First, they deal with the brain. Second, there really isn't any rhythm or
reason to these types of tumors. Sometime the tumors appear but never grow,
other times they appear and grow very rapidly and an aggressive treatment plan
is needed. We just don't know where we fall on that spectrum yet. Rylie is so
little. She has never shown any signs of trouble until recently so there was no
reason to send her in for an MRI so her doctor's don't know how long the tumor
has been there or how long it has been growing. They just don't have anything
to compare it to. Another big factor is Rylie’s age. Rylie is not even 2
years old; starting her on an aggressive chemo regiment will bring some serious
risks. Children's brains are still developing until around age 3 and starting
her on chemo too early could potentially bring on some major developmental
challenges later on not to mention it will make her very sick. It will be a lot
for such a little person to handle. It's a very fine line were walking...
Including her pediatrician Rylie currently has
a team of 6 doctors’ that we see on a regular basis. The good thing about this
is we have 6 different sets of specialties looking out for her best interest...
The bad thing.... Getting all of them together to communication and decide on
the best course of action takes time. Time we don't always want to take. Sure
we hate waiting. I remember sitting in oncology for the first time and after
meeting with the resident oncologist and her telling us the best option may be
to wait it out... We shot each other an "She has to be insane look"
and when she walked out of the exam room I told Brett there was no way in hell
I was going to sit around and wait while my baby has a tumor growing on her
eye. Then reality sets in. The attending physician came in and literally laid
out every option--- the good, the bad, and the ugly and suddenly it hits you...
All of these options suck! Every option has risks, risks we wouldn't wish
on our worst enemy. And weighing these options takes time and a whole lot of
patience. In the last few weeks we have had to learn to trust the process and
know they would never do anything to harm her... We have had to learn that the
doctors are not making us wait for fun. They are studying every detail of
Rylie's case and are talking to each other so we know that if and when it's
time to treat this tumor we will do it with a rock solid plan and we will do it
with a team of medical professionals that care about our baby's well being now
and 10 years from now. It's frustrating and stressful but we have to be patient
and know that when we move forward we will move forward with a plan everyone
agrees with and we will be stronger and more capable of giving it our best
fight.
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