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.

Carlisle playing at my sister’s house. :)

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 Diseño Dih-zenyo 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 berma.mr@msn.com 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.

 

xx, Mayu ♥
7 March 2014; 05:38 PM MNL

Carlisle For Another Surgery?

Well, yes, you’ve read it right. That’s what his doctors want to do with him.

On my last post, UPDATE: What Happened To Today’s Check-Up, we were referred to a pedia-oncologist by his pedia-neurologist for further testing. When we got there, she just conducted a simple interview about Carlisle’s medical history. She even said chemotherapy would not be an option for Carlisle since the tumor is designed to not respond to it. She also said that radiation therapy is advisable to at most three year old children. She said they need to talk about it with her fellow oncologists in a conference whether they will allow us to go with radiation on March (which is his 24th month) or wait until he’s three.

Still a happy baby. :)

So last Saturday, after waiting anxiously for two weeks for his pedia-oncologist’s advice, I decided to seek her pedia-neurologist’s words about what they’ve talked about in the conference, since she was also there according to one of her fellows. We arrived at her clinic by 12:30 PM and was checked past 5:30 PM already. We were her 13th patient. Her name is Dra. Antonia Moral – Valencia, by the way. She is the most reliable doctor that I know of, she patiently answers all my questions and expresses sympathy in our situation. She even let us have free consultation and says just add it to our funds.

Immediately, when she saw us, she asked if I already had a word with Carlisle’s neurosurgeons. It was supposed to last Monday, January 17th, but they keep on passing us to different doctors until we were not able to talk to anybody. My heart pumped like hell and I don’t know why.

“Hinihintay na sya ng neurosurge ah,” (His neurosurgeons are waiting.) she said. I asked why. And she said that what they’ve talked about in the conference was another surgery for Carlisle because the cyst grew unexpectedly faster than they thought.

“Wala na po bang ibang option?” (Are there no other options?) I said. Another surgery? A big no, my mind said. I don’t want to put his life at risk again. I was already traumatized when I saw him in seizure before he was transferred back to PICU. Yes, I’ve read that craniopharyngioma is a tumor that may come back even after surgery and radiation therapy. But I never thought it can be faster like this.

According to her, Carlisle was declined by hemo (I don’t know what they are for) and oncology because he’s too young to undergo radiation therapy. The last resort that they have is another surgery, to remove a part of the growing cyst. As per research, no one knows how big and how fast it can grow. Also, radiation therapy may be suggested if all visible tumor cannot be removed. That’s what the original plan is. According to American Brain Tumor Association, in children younger than three, radiation may be delayed by the use of surgery or hormone therapies.

Can the bi-weekly aspiration of fluid from his head be a little help to delay the surgery? Are there other medicines that I can give to him that can relieve him or stop the tumor from growing? Those were some of my questions, in teary eyes. Thank God, she understands why I don’t want Carlisle to undergo surgery again. It’s just eight months since his first major operation that almost took him away from me. I know this is for the best, but as long as there are other options, that I’m sure there will be, I don’t want to risk his life again.

She just said that she understands me, and will seek opinions from her fellow doctors that handle Carlisle’s case. If they will say yes for the postponement of operation, we will have another MRI procedure by April and continue his bi-weekly aspiration of fluid from his brain caused by the cyst. I do hope we would not end up to another surgery because it will kill me.

Happy to be with him. :)

With that, I decided to find more ways of how I can get funds for Carlisle. Aside from my work as a customer service representative which is my main source of income, I also am a part-time freelancer and an online shop owner. That would not suffice. I gambled my chances and messaged every Facebook owner that I know can help us. In God’s grace, Hope For Coby‘s page admin, which is the baby’s uncle, replied and shared some tips on how we can spread awareness about Carlisle.

I created Carlisle’s own Facebook page, Even A Cent Counts For Carlisle Von Patrick, and in just three days, we already got 403 likes and a lot of messages and donations. I was so amazed that I almost cried for all the help that we are receiving. Let’s do hope and pray that we have a positive news for the next follow up. Please like and share the page as well.

God bless everyone! Ciao! :’)

 

xx, Mayu ♥
24 February 2014; 10:27 PM MNL