Friday, March 7, 2014

We’re Not Giving Up on You, Craniopharyngioma!

We had our scheduled follow-up check last Monday on Carlisle’s pediatrician, ophthalmologist and neurosurgeons. Though we weren’t able to catch his pediatrician because we were caught on a heavy traffic on our way to the hospital.

Next stop, to his neurosurgeons. We went to the operating room as per instruction relayed to us by my uncle (who works at the same hospital as a radiologic tehchnologist), maybe they have an ongoing surgery. Nothing new, they still told me that surgery is the only way to lessen the tumor for now. Since Carlisle was declined for radiation therapy because he’s too young, what they want to do is to perform another surgery as soon as possible because they’re not sure whether the tumor will grow as slow or as fast as they can imagine.

Carlisle’s MRI last March 2013.
Craniopharyngioma is a cystic tumor, meaning that they consist of a membrane wall surrounding a hollow, fluid-filled, or semisolid space. The inner space of the tumor is filled with a hazy brown liquid that shimmers because cholesterol is present in crystalline form. Although considered benign, craniopharyngioma exhibit locally aggressive behavior and will invade surrounding structures if left untreated, according to Barrow Neurological Institute. So the liquid part is the one that is being drained to Carlisle’s ommaya reservoir bi-weekly. The solid part is the one that is being taken out through surgery. As what his neurosurgeons told us, the part that is growing now is the solid one. They need to stop draining fluid out of Carlisle’s brain because they need it for the operation, and as well, nothing else will be drained.

Would you blame a mother like me to have second thoughts on this situation? It was just been less than a year since Carlisle had his first major operation, and I almost lost him because of that. It pains me to know that he needs to undergo another operation in less than a year, and that he needs to feel those needles again on his skin. I asked his doctors if we could possibly delay it, or wait for another year, but their point is the speed of the tumor’s growth which is unknown. Our final decision is to have another MRI session and check whether the tumor grew again, and we all agreed to it.

Carlisle is unstoppable! :)
On the other hand, his ophthalmologist told us the same thing, that his optic nerves are still pale to work. Would it still work? Sometimes it depends on the age of the person affected, the number of years that the nerves are crushed. Any vitamins that we can give to energize his nerves? None. Same thing. Same old story.

Though we have received devastating news this week, those are washed away with all the good things that all happened to us. Last Monday, March 3, 2014, Carlisle’s story was featured by one of his page followers and Manila Bulletin columnist, Kathrina Yarza. Kathrina also has a tumor in her brain and fortunately, it’s been stable for eight years now. Like Carlisle, the tumor caused her to lose one of her five senses – she became deaf. We were very much thankful to Kathrina who became our bridge to people to raise awareness against brain tumor. Yes, it’s not just for adults, even babies can have it. You can also read the article here.

Carlisle’s plea for help.
Since the day that I've set up our Facebook page (which is February 20,2014), we now have 587 likes from people not only from Philippines but also from other parts of the world. It was so touching though that there are still kind people who would helped someone they don’t directly know. I mean, it was so relieving that people will send you messages of hope and faith every day. That’s one of the things that inspire me to go on with this battle. And I really thank all these people for their warm support.

Currently, we have raised 5.29% from GoFundMe alone, and 17.13% of our $7,000 goal in total. I included all of the donations, my spare money every pay from my full time work, my salary from my freelance work, and my loans from our local government system. I’m so happy that I don’t have to think about his hospital funds. We can do laboratory requests by his doctors immediately, and even his MRI can be done in time.

We have also started our fundraising campaign for Carlisle’s hospital funds. We currently are selling shirts in all sizes. Thank you to Noreen Galvez for making this possible and to JR Jimeno for printing our shirts. Other sizes are also available by request. For orders, kindly send us a message at our Facebook page, email us at or text us at 63939 883 6164 along with your preferred shirt size and quantity.

Shirt design. :)
We also have a safer way to donate. You can now send your donations for Carlisle on his Facebook page itself. Just click the Donate tab and it will be sent automatically to our PayPal account. For other means of donation, check the image below. If you have spare time, please do share this as well.

In 24 days time, Carlisle will be two. I’m so proud that I have raised such an amazing kid. I just wish we get passed through this as early as we can, so he can live a better life. I love you, son, more than anyone knows.


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