Wednesday, December 16, 2015

Well Wishes for CP

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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