It is never a good thing when a child becomes sick, really
sick. It is so much worse when it
happens at the holidays. Unfortunately,
this has recently occurred in my family.
My cousin CP has been diagnosed with cancer. This blog is dedicated to him as well as his
parents and his brother.
CP is a few months shy of two years old. He lives with his Dad (my uncle), his Mom,
and his older brother. From the moment he
was born, he was sick. At first, he was
just not a very energetic boy, kept getting respiratory infections, and was not
hitting the right developmental goals for his age. Finally, they diagnosed him with Neurofibromatosis
type 1 (NF1). This condition causes (usually)
benign tumors to grow on the nervous system (if you want to learn more about it,
here is a link to the Wikipedia page https://en.wikipedia.org/wiki/Neurofibromatosis_type_I). CP developed tumors on his optic nerves,
which caused almost complete blindness.
They have treated him over the past year with a few different chemotherapy
drugs, which has further inhibited his growth as well as put stress on his
circulatory system.
Last week, CP went to Children’s Hospital to get a battery
of tests run to see how his tumors were responding to the treatments. At first, it was all good news. His optic gliomas seemed to be stabilized. His blood pressure was down and his EKG was
good. Then, the final MRI was done, and
the bad news began. He had too much
fluid and swelling in the brain. He also
had a new tumor growing on his thalamus.
They performed surgery to insert a shunt to drain the fluid and to do a
biopsy of the tumor tissue. Then, the
worst news yet came, the tumor was malignant. He has a Fibrillary Astrocytoma, WHO Grade II
(if you want to learn more about it, here is the link to the Wikipedia page https://en.wikipedia.org/wiki/Fibrillary_astrocytoma).
Unfortunately, the treatment options are
limited at this point. His age and the
location of the tumor mean surgery and radiation are not options. The chemotherapy drugs that normally would be
used are the same ones that he was already taking to treat the NF1. The doctors are attempting to get him
qualified for a clinical trial on a new chemotherapy drug that has some
promise. They are also working to reduce
the fluid buildup and swelling to keep CP as stable as possible while they try
to come up with alternative methods of treating the cancer.
Right now, there is not much that friends and family can do. CP is already receiving the best care he can
from the doctors as Children’s Hospital.
The Ronald McDonald House charity is helping the family with living arrangements
as they stay there to get CP’s treatment started. My aunt’s family is caring for CP’s older
brother so his parents can focus their attention on CP. My grandmother and another aunt just went out
to offer what support they can as well.
The rest of the family remains very far away geographically, but we are
trying to keep them close in our hearts.
I am not much of a praying woman, but my thoughts and hopes are with
them this Christmas. I so very much hope
that the doctors can figure out a plan to treat the cancer and clear it from CP’s
brain. This holiday I hope my family can
still find the energy to enjoy Christmas with their children and each other
despite the circumstances. Finally, I
hope that someday I get the chance to once again hug CP, see his beautiful
smile, and enjoy the energy of a little boy who is feeling better.
I encourage you all to hold your family close and treasure
every precious moment with them.
See you next week!
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