Today, it's 200 Filipino NF Friends!

I’m not sure if it’s okay to be happy about this, but I AM SO GLAD!

Ever since I met my first, NF Friend (Ate Cel), I’ve started listing down the names of my NF Friends. Wala lang. Gusto ko lang.

I started writing it on Notepad (the app).

And then the names on the list reached 15++, so I transferred it to MS Excel while we were hoping that we’ll be plenty enough to be able to form a support group.

And then NFF Support Group was born!

I keep revising and editing the list as our members grew in number. When it reached 50, I wished that if only I can group the members according to theeir location so that they’ll know who lives near who. But I think it won’t be fair for some if nobody else is located near them. 

Fast forward to today, we already have: 65 NF Friends from Metro Manila, 12 NF Friends in Rizal, 14 NF friend in Laguna, 13 NF Friends in Cavite, 8 NF Friends in Bulacan, 10 NF Friends in Southern Luzon, 23 NF Friends in Northern Luzon, 27 NF Friends in Visayas, 17 NF Friends in Mindanao, and 10 Filipinos with NF from outside the country.

Once again, I have mixed feelings about this. Happy that we already have a lot of members and it’s now a 3-digit number. Sad that there are a lot of us who have NF. And then VERY HAPPY that we found each other! We are really not alone.

  

The other night, while I was arranging & organizing the list, I suddenly felt so amazed, happy, & grateful all at the same time and so I posted this:

It goes something like this:

When there are members who were able to find NFF (support group) because a random person approached them and asked: “Do you have NF?” and then told them about NEUROFIBROMATOSIS FRIENDS (Philippines).

When there a students who send messages to the NFF page because of their case study, thesis or assignment that is about NF.

NF may still be not that known and a lot of people are still not aware about it but *tears of joy because even if it’s something small and only a few people knows about it, still there is something.

It’s just like the saying, “every cent counts.”

Big things are made of small things, right?

13 years of winning versus NF

I was having double vision. Went to neurologist and neuro-ophthalmologist. EMG (electromyogram) test said something is wrong with my nerves. What is it? Undefined. Then MRI (magnetic resonance imaging) of the brain it is! There were 3 big white spots on my MRI plates. Brain tumors. I have brain tumors. I didn’t feel sad, or maybe a bit sad at first; though I really can’t remember feeling sad that time. In fact, when I got home, I was running around our compound raising and telling everyone that I have brain tumors like I was on a show and tell. I was definitely happy about it, buy why should I feel sad when I don’t feel sad. In fact, I was amazed because not everyone has brain tumors. Maybe I’m really weird. Haha. And now I know the answer: FAITH. I from from the start that everything has a reason, I didn’t know what that reason is, I have no idea what is it, but I know that there is.¬

After 2 or 3 visits to the neurosurgeon’s clinic, I was diagnosed with NEUROFIBROMATOSIS TYPE 2 (NF2) on October 15, 2004.

All along, I thought it was August 2004 but then again I saw that my first MRI was done was on September 29, 2004 (link the fb album) and I was able to figure it out, thanks to my blog, an online journal & my memory.

I was diagnosed a day before our simple DBS Batch 2000 get-together at Dencio’s Grill in Megamall. I can recall telling them that I have neuro something something – a long & tongue twisting word “basta may brain tumors ako” – I can recall cheerfully saying those words. Haha.

That was also the day (err, night) that we (Lea, Pau & I) became friends with Madie again. That was one of my significant “everything has a reason” in life.

Madie organized and gathered some of our batch mates and found a way to raised funds for me at Don Bosco Technical College Alumni Homecoming & Jig concert in 2005 in Jig 2006 as well and so on.

Later on, we found out that I have the type 1 (NF1) as well and all my diagnosis (or misdiagnosis) in the past were ann symptoms of NF1.

“You don’t look sick.”
“Maybe you are sad about it and you are just hiding it.”
“You must be in a lot of pain.”
“Are you really alright?”
“Are you sure you are not scared?”

My family & friends keep telling me those words especially whenever I say: “I AM OK”

I keep telling them that I am fine, being sick and having brain tumors really doesn’t make me feel sad, I am not scared (not a bit), etc.

No, I don’t really find it irritating because I understand the reason they are saying those words. Those are their TLC (tender loving care).

I wrote this on October 17, 2004:

“She (Tita Angie) asked me what I really feel daw. I told her, "tanggap ko" (“I accept it”). I’m not trying to hide my feelings. Whatever I'm showing, ‘yun na ‘yon (that’s it). Why should I cry? Why should I get lonely? Ano magagawa non dba?! (What can it do, right?!) I shouldn't stop living life the way i want it to be just because I’m sick. Lalo lang ako magkakasakit (The more will I get sick) like depression or something.

There’s a reason behind all these. I know there is. O diba?! (Right?!) Is this really me?! I'm not just showing you that I'm a strong person even though I’m really scared. I need to be strong, but I’m not really that scared. Ganito lang talaga ako. (This is really how I am) Even in the hardest situations, I still try to look on the positive side of things. Even if it's isn't visible, I will really find it. 

Hindi ako nagpapaka-manhid (I’m not being numb). This is how I am. This is how I take it. Smile nalang (just smile). I don't really want people's pity, though I’m really touched whenever someone comforts me or lets me feel their concern. As in! Promise. But you don't really have to think about it a lot of times and be bothered by it. Sige na nga, alam ko na hindi niyo naman mapipigilan mag-worry kaya (Okay, I know that you can’t really stop being worried, so) THANK YOU.”

 And then on November 19, 2004

“My mom and I went to PGH this morning to meet with the chairman of neurosciences, Dr. Willy Lopez, for a second opinion. Well, I really need to undergo surgery. Maybe in 2 weeks.. 3 weeks.. I’m not sure but I think it's gonna be within this year which is in less than 2 months.. Hay-ay-ay! Hehe!”

At one look on my MRI plates (When we barged his office. Haha.), he knew that it was NF2 at once.

We visited Dr. Lopez’ clinic the following week and then he became my doctor and took care of me since then.

Ever since then, a lot of thing had happened. Good things. Bad thing. Problems. Pain. Struggles. Triumphs. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc.

Like you and most people, I also felt like I was pushed flat on the ground, everything's seems wrong and I can't do anything about it, but I chose to stand up and move, Little by little, with all of my might, no matter how little it is. I’ve fought, I’m still fighting and I’ll always be fighting through life.

While tapping my head, my mom said, “You are so blessed!”

And because I keep moving and fighting, the blessings that I’ve been receiving are my reward. So, the bigger the battle that we’ll conquer, the bigger the reward.

And I am very grateful because God put me in this kind of battle; a battle that HE is a part of.

Cheers to 13 years of living an AWESOME LIFE despite of battling with NF!

Those are tumors. Blue and green are the colors of NF. 13 years. And 13 is also my favorite number.

MAY IS NEUROFIBROMATOSIS (NF) AWARENESS MONTH

When we are aware about something, we start caring about that something and because of caring, great things can happen; small and big things.

I made an NF AWARENESS Twibbon that can be used by anyone and everyone – with and without NF. Use this and show your support. It may be a simple and trivial thing to do but this little thing ban bring us closer to greater things.

https://twibbon.com/Support/nf-awareness-month-2

Know all about NF and share the information to at least one person. In this way, we can make NF known and increase the possibility of finding a cure for it.

Be aware about NF and show everyone that you care.

Please visit our page:
NEUROFIBROMATOSIS FRIENDS (Philippines)

Our scars will make us a stronger person.

I was reminded of the word “scarface” and then I giggled and immediately wrote this on my Facebook wall:

And then my Malaysian friend, YL shared with me something Keisha wrote about dealing with NF2 and surgery scars, this was from her last public speech before she passed away in 2014 and here it is:

"I have a genetic condition called NF2. Basically, tumors grow throughout my nervous system, and every time I have sought treatment, I come out of the operating room with a new scar - a souvenir to remind me of a hard-fought battle for survival.

I do not see reason to consider these scars a disfigurement of my body. Rather, I choose to see them a testament of how trials and adversity can unite the human spirit. Out of tragedy, my family, doctors, nurses, physiotherapists, caregivers and friends have united time and again to shine forth with the ultimate good within humankind. This is the story behind each and every scar on my body - of a unity of care and love turning tragedy into triumph.

In overcoming danger and earning the scars, I have found true strength, true character true faith and true love."

—Keisha Petrus (1989-2014)

Though I wasn’t able to meet Keisha when she was still alive, it's like I already did and I’m so inspired by her. Thanks to YL that I got to read her previous writings.

“My duels with NF2 have left me scarred, wheelchair bound and deaf! As bleak as that sounds, my life doesn’t revolve around the hospital. I have never let NF2 stop me from living my life. To the contrary, I have allowed my condition to provide me opportunities to broaden my horizons, challenge my faith and test my character. So instead of wallowing in self-pity, I embrace adversity to bring out the best in me and overcome the obstacles in my life. Thanks to my condition, I’ve been able to experience the world in a way few people get to see. The fragility of life inspires me to live to the fullest."

— Keisha Petrus (1989-2014)

It’s so amazing that we have the same outlook in life. WOW. WOW. WOW.

While I was about to write this blog post, YL commented on the status that I posted in Facebook with Keisha’s peice. 

Maybe, God eavesdropped on what I was thinking again and HE learned about the topic I’m planning to write & asked Keisha to whisper to YL for him to share that certain writing / speech that she wrote back in April 2014 that I posted above.

I also love this poem written by Keisha:

I Am Wearin' My Skin

Poem by Keisha Petrus

My message stands tall with pride and grace, 

My words in good time shall be like wind, 

Brace yourself dear friend, let the breeze propel you, 

Trust in my mission, and you will be free to live life’s embrace.

I once was swayed by aesthetic charm, 

Beautiful hair, beautiful eyes, beautiful body, 

I sweat, I sought, I fought, 

To no avail did I reach my Envy.

Lost a few pounds, strapped on my heels, 

No more laughter, no more tears.

But my heart knew better, I lacked content, 

I yearned, I cried, I prayed for something more than this.

My pleas were answered, my life put in perspective, 

Those blossoming belles bore nothing, 

Instead engrossed in hopeless insecurity, indeed highly defective, 

A hidden image behind a mirror, a roamer’s reflection.

Loving myself is more important than ridding my blemishes, 

As women come in many shapes and sizes.

I spend my time now in helping others, 

I am wearin’ my skin, no more empty and foolish disguises.

Today should be my 11th birthday. Haha.

October 25, 2005 — it’s my Tita Myrna’s (aunt & godmother) birthday. I was supposed to went upstairs and use the computer to send her an email and greet her a happy birthday but then I suddenly felt very dizzy (servere vertigo) and I can't climb the stairs Vertigo + Severe headache = I passed out and became unconscious..... then DOT DOT DOT

I was rushed to Philippine General Hospital and was admitted there. Thant was the start of my 2-month long hospital stay when my health deteriorated and became weaker and weaker. 11 years ago. Everyone thought I won’t be able to survive; everyone — including the doctors and nurses.

About to die, maybe?

It’s so amazing that from being bedridden and very weak, I feel so great and stronger now.

I may still be in this condition with a lot of limitations, but still. No need to explain further, instead I’ll let my life explain it to you..everyday..as long as the clock is ticking.

Today should be my 11th birthday. Haha.

October 25, 2005 — it’s my Tita Myrna’s (aunt & godmother) birthday. Upon waking up, I sent her a birthday greeting via email and then DOT DOT DOT ……

I was brought to and admitted at Philippine General Hospital. Thant was the start of my 2-month long hospital stay when my health deteriorated and became weaker and weaker. 11 years ago. Everyone thought I won’t be able to survive. Everyone, including the doctors and nurses. About to die, maybe? It’s so amazing that from being bedridden and very weak, I feel so great and stronger.

I may still be in this condition with a lot of limitations, but still. No need to explain further, instead I’ll let my life explain it to you..everyday..as long as the clock is ticking.

I dunno what title to put, it's just so amazing!

Last Friday, while I was waiting to be prayed over by Fr. Joey Faller after the healing mass, something suddenly pop out of my mind that made me say, “Thank you, thank you so very much, Lord.” I kept on thanking God until it was already my turn & Fr. Joey placed his hand over my head.

Back in late 2005, when I was confined in the hospital for 2 month and my health deteriorated. Most of you know that I became so weak then. Very very weak. It was really hard to move on my own. Even when I want to roll on the bed and change my sleeping position, someone has to do it for me.

Back then, I would often close my eyes and imagine myself getting better and kept telling God. “Please heal me. Please. Please. Please. If You do, I promise to pay You back by sharing your words through my own words , with my own life."

***TEARS OF JOY***

 I was discharged from the hospital but even if I am already home, I still kept pleading to God especially when I had an anxiety attack in Holy Week 2006.

And then last Friday, I just realized that God has been answering me since the day after Holy Week 2006.  

I keep on stopping while writing this because it’s just so amazing! I feel like crying and thanks Him again for not letting me cry coz I might hyperventilate. I even don’t feel like there’s a lump on my throat. Thank you, thank you Lord.

And wait, there’s more!

During a conversation with someone, I got to remember this…

 AMAZING! AMAZING! AMAZING! I don’t know what else to say. It is really so amazing!!!

And now, God made my words to Him when I was lying in the hospital bed in 2005 become a reality. ANG GALING GALING TALAGA!

It's bcoz... WHY NOT?!

Why am I so strong? Why am I so brave? Why am I still a happy & cheerful person despite the not so good things that's happening in my life? Why am I so confident about myself? Why am I able to laugh at myself? Why am I full of positivity? Why do I find it easy to move on with my life?

Why? Why? Why?

Ever since whenever (even before I was diagnosed with NF2 in 2004), I often encounter these questions and people would complement how brave and strong I am and that I have a very a positive outlook towards life.

While smiling, I would alwaya answer: “Ganon talaga.” (that's how it really is) or “Why not?” Haha.

Now I realize that my Faith has been working since then. Faith in myself, Faith in others and of course, Faith in GOD.

And now I totally get it, this is the reason why I have a very big and very strong FAITH today. Wow. Wow. Wow. Thank you Lord!

• I am strong because God is the strongest.

• I am brave because God is at my back, in front of me, my left-side and right-side, above me and below me. He is all over me, protecting me.

• I always feel so good because God is so great. He is the greatest!

• I am able to face these challenges because I am not doing it alone. I am surrounded with awesome people and of course, an awesome God.

• I am always ready because God already prepared me before I was born.

• I am a fighter because God is with me in all of my battles.

• I am a cheerful person because God is always making me happy!

• Amazing things are happening in my life because an amazing God is doing it.

Indeed. EVERYTHING HAS A REASON.

Cranial Surgery: Success! It was double the awesomeness!

“Lord, please continue doing amazing things in my life. I don’t think I need to tell YOU to make my surgery a success because it will be successful like always, thanks to You!”

I’ve been telling those words to God everyday until I was waiting in the surgery suite, waiting to be transferred in the operating room.

Looks can be deceiving. It's not as painful as it looks

June 17, 2016, 7 am. After a couple of minutes waiting in the surgery suite, I was brought to operating room number 10. This is it! When I already felt like I was about to doze off from being sedated, the last thing in my mind was, “Lord, Ikaw na po ang bahala ha.” (Lord, it’s all up to You)

Before entering the Surgery Suite

And then I woke up. I was in the surgery suite again. The operation was done and I already knew that it was a success. It felt like I had a really good, deep and long sleep. I was asleep for almost 10 hours, that’s why. The surgery took that long huh? It was not only a tumor excision, reconstructive surgery and tarsorrhaphy were also done. Titanium mesh was placed and my right eye lids were partially and temporarily stitched together in order to protect it.

While I was looking at the exit sign in the waiting room (surgery suite) before the operation, I told myself, “Later, after this operation, I will have a clearer vision and that signage will not be too bright and cloudy anymore.” And I was right, the exit sign was clearer!

When they wheeled me out from the surgery suite, I thought I’ll be brought to the ICU and I was so surprised when they wheeled me back to my room instead. I was feeling very fine. It really felt like I just slept in the operating room. No ICU stay? Wow! This is the first.

Nothing was painful. My head was not feeling heavy. I didn’t feel any discomfort. I was as talkative as always. After a few hours or minutes, I asked my mom to give me my mobile phone so that I can see how I look like and then I clicked the camera and took a selfie before sleeping.

Hours after the operation. I was very much okay. I took that selfie by myself. :)

It was a sleeping galore. I didn’t felt like I got weaker, I kept on sleeping so that I won’t think of eating coz it’s NPO (Nil Per Os - nothing by mouth) for me. Haha. My red blood cells were low so I had blood transfusion while I was doing my sleeping escapade.

The following day, I was already on a liquid diet (YES!!!!), soft diet the next day and 3 days after the surgery, I was already back on a regular diet!

With my neurosurgeon, Dr. Willy Lopez

My taste buds, chewing & swallowing didn’t change. I already had a lot of major surgeries and it usually happens but not this time. I had numerous mouth ulcers and even sore throat after a major surgery and I’m so used to it but it didn’t occur this time. I didn’t get a bit weaker. Nothing changed.

Selfie!!!!

The only thing that needs to recover are the scars on my head. So I told myself that when the staple wires on my head are removed, it means I have fully recovered. But I never expected it to happen this fast. 1 week and 4 days after my operation, we went to my neurosurgeon’s clinic for a check-up. We thought that he’ll only remove the stitches on my eyelids, but he removed all the staple wires on my head as well. Wow. It’s already healed. Speedy recovery it is!

Dressing of the wound at home. I was discharged from the hospital 5 days after the operation

My surgery last April 11, 2016 was so amazing and I never thought that greater things are going to happen. Amazing! Amazing! Amazing! Because God is in control, amazing things keeps happening in my life and it gets more and more amazing!

Please don’t idolized me, I am not the one who is doing all these amazing things in my life. Believe me God is really taking over my life. I am not in control, I am God’s instrument. I am letting Him use me. This is all His doing, I don’t want to take all the credit for it.

I am strong because God is the strongest.

I am brave because God is at my back, in front of me, my left-side and right-side, above and below. He is all over me, protecting me.

I always feel so good because God is so great. He is the greatest!

I am able to face these challenges because I am not doing it alone. I am surrounded with awesome people and of course, an awesome God.

I am always ready because God already prepared me before I was born.

I am a fighter because God is with me in all of my battles.

I am a cheerful person because God is always making me happy!

Amazing things are happening in my life because an amazing God is doing it.

"How do you combat all the challenges in your life?This is a question that I often encounter. I always say that my biggest weapon is my faith in God and faith in myself.I have realized though that my faith in people is also important, especially those who are part of my life……”(Excerpt from Being Ready (April 11, 2011)

Thank you. Thank you. Thank you. Thank you for paying with me. Thank you for all your love and support. Thank you for helping me. Thank you for letting God use you and become His instrument to help me. Thank you for being one of my blessings. Thank you mother, father, sister & brother. Thank you Dr. Willy Lopez and the medical team. THANK YOU!!!

“God also knows that we need people to help us and to guide us. He sends mortals from different walks of life to help us in many ways and means. He is so able to show His power and might in doing His part.”

From now on, I will go back to focusing on improving my health and I am claiming that a big improvement will happen to me before the year ends.

When I become better, God can make use of me more!

Fight! Fight! Fight!

Neurofibromatosis is a continuing battle not knowing when another tumor will show up and cause me harm but I am not backing out. I will keep on fighting! God is bigger and stronger than NF!

I am ready for my next cranial surgery but...

I have already recovered from the open-brain surgery as soon as it finished last April 11, 2016. I regained my full-consciousness at once after the medical team have successfully removed my 6 centimeter brain tumor and closed my head. I woke up at once. I was already 100% conscious. I can still remember every detail of everything that transpired from the time I opened my eyes. I felt like nothing happened. No discomfort and pain. From then on I started to recover, not little by little but I had sudden improvements. Amazing things were happening. For example, just the day before, I can’t get up from the bed on my own, and then the next day I CAN! And that didn’t happen just once bur many times. God surprised me many many times and it’s really amazing!

 

 Here’s the list of my improvements. I’m not sure if everything is on this list, but one thing’s for sure: I had an amazing recovery!

1. My vision is brighter. It’s too bright though but I believe that my vision will still improve.

2. My vision is clearer. It’s not blurry anymore and I can do without eyeglasses.

3. I can see in the dark, I can see what’s happening inside a dark car at night, everything that’s going on in the dark parking lot & I can already see silhouette people or things in a dark room; it’s not all pitch black for me anymore.

4. My eyes don't hurt anymore when it's too bright. I can look in the sun without hurting my eyes. Of course it’s ‘nakakasilaw’ but my eyes don’t sting anymore.

5. I can eat on my own already. No one needs to feed me. I can properly shoot the spoon in my mouth again.

6. My left foot isn't swelling anymore (after 10 years).

7. My right eye is not too bulge out anymore. It went inside a little bit and is already parallel to the left.

8. My right eye can see. It’s still blurry because of the scar on my cornea but it it can see what my left eye can see.

9. My knees and legs are not weak anymore. I can stand by myself again.

10. I can sit on the bed. I can sit without backrest.

11. ’Kaya ko na uli ang sarili ko’

12. I can get up from lying down. I can do it without any help.

13. I am able to transfer from the bed too the chair & vice versa using my own strength

14. II don't easily get tired.

15. I can use the pedal & exercise again

16. My brain cells are already working because I can be able to write properly and my writing-style is already the same as before.

17. My arms and legs are not that skinny anymore.

18. I can easily find what I'm looking for as long as it's located somewhere that I can see. Unlike before, I I find it hard to see what's already in front of me.

19. I would always slouch when sitting and when I was weak, I needed someone's help to fix me and make me sit up straight, but not anymore! I can sit back straight again on my own and I can do it easily, without feeling like I am falling.

20. Before, the computer monitor in front of me needs to be open when I'm using the mirror for added light. Now, the light on the ceiling is already enough. I can use the mirror and use it properly even without an added light.

21. I don’t nearly fall off the chair anymore when reaching for things that’s near me.

22. I don't ‘hikbi' and hyperventilate at once when crying.

23. I’m less ‘madungis’ when eating. I can already control my food intake

24. My regular chewing & swallowing are back!

25. Minimized GERD (Gastroesophageal Reflux Disease) ‘Nuff said.

26. No pain still. Period.

I believe that I have already finished my FULL RECOVERY because I can’t think of anything more to recover from. I feel so great! Everyday. Since day one.

I am ready to have the next cranial surgery for the removal of tumor in my optic wall. I am ready, but the Php700,000 isn’t ready yet. We are not yet done raising the funds. God will provide. HE always does. Maybe you are one of God’s instruments in helping us.

You are one of my countless blessings, right? Here are ways on how you can help.

1. Buy my book

Price: Php450.00 plus shipping fee (P60 Metro Manila, P100 Provincial)

You may place you order to me via Facebook or my mom, Madge Yarza – you can send her a PM on Facebook or contact her at  09272459400 and send us these details:

Name:
Contact Number:
Quantity of book/s:
Shipping Address:

You may send your payment via BDO, BPI, Money Transfer, or Paypal. Meet-ups can only be done in Kalentong & Hypermarket in Shaw Blvd. since it’s near our place.

2. Care & Share by donating

• BDO
Account Name: MARIA KATHRINA L. YARZA
Savings Acct Number: 00 02 809 824 88

• BPI Express
Savings Account # 1899 394 7 51
Name: Maria Kathrina L. Yarza

• Money Transfer (Western Union, LBC, Cebuana-Lhuillier, MLhullier, Palawan, etc.)

Name of Recipient: Madeliene Lopez YarzaAddress: 451-M M. Vasquez Street, Barangay Harapin Ang Bukas, Mandaluyong City 1550 PhilippineContact #:  09272459400

• PayPal
 kcatyarza@yahoo.com


3. PRAY WITH ME

In this way, you are bringing us closer to God. Both of us. You & Me.

4. Share my story to everyone you know

Forwarding this may reach people who wants to help as well. Internet and social media is very powerful these days.

“Through social media, missing persons are found; sick persons are given chances to live a healthy life. I say, that is the modern bayanihan movement.”

I often tell God: “Lord, please continue to do amazing things in my life so that I can keep on bragging how great YOU are.”

You can also share this note on Facebook

35 Staple Wires on my head

After 18 days, the staple wires on my head were removed.

Here is the video taken by my dad:

My AMAZING STORY because God is in control

Living in pain but living a beautiful and awesome life!

I often have sudden nerve pain on my head; but I still feel so blessed because before I can even react and say “ouch”, it’s already gone. That happens every 20 minutes and lasts for an hour or even the whole day, but each prick/pain is only a second or less.

Headaches are becoming frequent these days, as in almost everyday; but I still feel so blessed because all the pain I’m feeling are always tolerable.

image from google

How caring are you?

A couple of my concerned friends told me about GoFundME, YouSharing and other Crowdfunding sites. When they told me about it, I refused and said there’s really no need for it coz it’s not like I’m raising funds for a much needed medical procedure like surgery or something. I’m continuously doing a fundraising campaign to sustain my recurring medical needs; NF is a continuing battle. Besides, there are a lot of people who needs more help compared to me. I didn’t want to put up a fundraising page then, but I considered and told myself that if I really need to raise a big amount for my surgery, I’ll make one.

Please don’t feel obliged to give. Share only if you can and I’ll sincerely appreciate it. You can buy a shirt from me. May tshirt ka na, nakatulong ka pa at may chance ka pang maka-inspire ng kung sino mang babasa ng nakasulat sa shirt mo! Haha. Praying for me is helping too. I really feel comforted and more at ease whenever someone tells me that they’re praying for me.

http://www.youcaring.com/kcatumors

Anyway, here’s my youcaring page, I tried creating a gofundme page but they  don’t accept Paypal. We have a dollar account but my mom’s not sure if it’s still active. Time is moving and we still have a lot of things to do, so I'll use my Paypal at youcaring site instead.

Please read:
3 bad tumors: Please help me shoo them away!

3 bad tumors: Please help me shoo them away!

  

MRI scan results are out and it’s 3 pages long! Meningioma. Schwannomas. Lesions. Mass. Soft tissue. Irregular. Abnormal enhancement. Definite progression. Tumors, tumors and more tumors all over my cranial MRI. Aside from the 4cm big bad brain tumor, there are also tumors on my optical wall (on each side) that needs to be treated. That’s 3 bad tumors! Hopefully the other tumors will remain small and behave forever!

It’s Hypofractionated Stereotactic Radiation Therapy (SRT) times two that costs Php 593,450.00  and we need to raise it within this month.

Here’s the copy of the estimated price quotation we got from Medical City (the only hospital in the country that has this kind of treatment) – the red marks are the discount.

Here’s the plan according to Dr. Vega (radiation oncologist):

Please help me shoo this big bad tumor away

Hello! I’m Kcat Yarza. As you all know, I was diagnosed with Neurofibromatosis (NF–tumor of the nerves) and I have so many tumors all over my body (inside and out), including the brain. I got lots of small, benign and harmless tumors in my brain except for one aggressive big bad tumor that measures 3.8 x 4.7 x 4.3 cm and causes further compression of the brainstem. Although no too severe (yet?) this causes my frequent dizziness, nerve pain and headaches. If I am able to walk by myself, I would have fall down often and lose my balance. Maybe that is why I kept on falling from my chair countless times.

This tumor needs to be treated with 5 sessions of hypofractionated stereotactic radiation therapy that will cost Php 400,000 or it could be more. It’s not really an emergency but we need to prioritize it because it’s already big and we don’t know how aggressive it is. If it gets bigger, it could cause more harm. How soon is soon? Hopefully before Christmas. Maybe. With your help, this CAN be possible! God will provide.

Every cent counts.

Big bad brain tumor

In May or June (this year), I noticed that I frequently have headache, nerve pain (inside my head) and I often feel disoriented. Good thing, I already know how to manage it. That’s what life is with Neurofibromatosis (NF) and I’m used to it. Then a few weeks ago, I’ve been feeling disoriented and I almost had a seizure. I know the feeling every time I’m about to have seizures. I just know. Amazing, right? I just have to stop what I’m doing, be calm, drink water, drink my anti-seizure, drink water again, and deep breathing. Inhale. Exhale. It works all the time! I never had seizures ever since I started doing this. Almost seizure but it never succeeds! I always win! Haha.

After that, I told my mom that I almost had a seizure and told her about that ‘disoriented feeling’. Then we remembered that it’s been a while since my last cranial CT scan to monitor my tumors. After that, my mom told my neurosurgeon, Dr. Lopez about it and a few days after we got the letter of request and I was scheduled to have the CT scan at PGH-FMAB.

Too good to be true, but it's really true!

My mom always massages my legs with Oleia. Today, Lastnight, when I scratched my legs while I was in bed lastnight, I was surprised when I can't touch the tumor on my right lower leg. I was too sleepy to find it, so I just told Talitha to send me a message on Viber that my tumor is missing. :P I found it today and it shrunk in size. I think it's only 1/4 in size compare to my June 2010 blog post. Amazing!

Amazing, right?

KCAT CAN: Unwavering Faith

Unwavering Faith

Late last year, I met Joyce Quiñones because of the group Neurofibromatosis Friends (NFF) Philippines. Her younger sister, Shiela was recently diagnosed with Neurofibromatosis Type 2 (NF2) just like me.

She has multiple tumors in the brain that affected her hearing and vision. She needed to undergo surgery to have the tumors removed but her family doesn’t know where to start. Upon my suggestion, they went to see my neurosurgeon, Dr. Willy Lopez, and after that clinic appointment, they were enlightened. Her craniotomy and radio surgery were both a success!

My right eye is always red..bloody red

Finally, we (my mom, dad & I) were able to go to Dr. Rey Santos' (my ophthalmologist) clinic in Capitol Medical Center coz my right eye is super duper bloody red since before new year.

KCAT CAN: Addressing a global issue

Addressing a global issue
By Maria Kathrina Lopez Yarza
Published: May 13, 2013

It’S my birthday today! The month of May has always been special to me not only because this is my birth month, but because of a couple of other reasons that calls for a celebration. Most of my family members were born this month – my uncle on the 6th, my dad on the 10th, my cousin on the 16th, my brother on the 17th, my grandmother on the 20thh and my mother on the 27th.

This May 18 will be our 7th annual gift-giving at the Philippine General Hospital and I’m certain that it will be as successful as the previous years. More importantly, it’s also Neurofibromatosis (NF) Awareness Month, and I’ll get to celebrate it with my NF friends who’ll be joining me in my upcoming birthday project to spread NF awareness on May 18. Someday, I wish that we’ll have our own NF event in the country.