Chek's battle with NF1

My first born was diagnosed with NF1 when he was two years old ( Dec. 2008). His pediatrician advised us to consult a dermatologist due to some skin rashes. After a long look at Chek’s back which was peppered with café -au -lait spots , the dermatologist told us, that Chek might have NF. She immediately advised us to see an ophthalmologist. The ophthalmologist confirmed our fears. He detected Lisch  nodules. After that, his pediatrician advised us to have a yearly check up on Chek’s eyes and to undergo CT scan to check if there are tumors growing inside his body. She also advised us to be more sensitive on Chek's body, should always be on look out for  "bumps" growing and have it checked ASAP.

Year after year we had Chek’s eyes checked by an ophthalmologist (results are all OK)  but put on hold the CT scan procedure. Since he is still a kid, doctors informed us that sedation is required for this procedure.  We initially kept this a secret. Somehow sharing this  means accepting all the possibilities this disorder brings (cancer, paralysis, disfigurement, blindness and learning disability.) Prayers and the thought that God will never leave Chek strengthen us. We also stopped researching about NF. The more we are informed the more scared we become. My husband and I  cried to sleep every night the whole Dec. 2008. We never felt so helpless. When we look at Chek, we saw a boy full of promise but somehow due to NF1 his future seemed so unclear.

Chek when he was diagnosed with NF1

Today, Chek ( 6) is a very active healthy boy. He is enrolled in a mainstream school.  He is now starting to realize that he is different from other kids. He is starting to compare himself and will tell us that he will look more handsome if he does not have the black black  marks (his term for cafe au-lait spots). The mark is the least of our worries. Our fear lies on what is growing inside his body. 

Last August 13, 2012, we visited his neuro-pediatrician at Manila Adventist Medical Center and Colleges at at Pasay City. We commuted from our house in Cavite to Pasay.Rode on a trycicle, jeepney, bus and a train to reach his doctors' clinic. The train ride was the highlight of Chek's day.

It also released the tension in me. Seeing him so happy gave me a positive vibe on the impending doctors' diagnosis :). Her doctor advised us to have an MRI and EEG immediately. The following day, I prioritized his EEG and MRI schedule at Asian Hospital and Medical Center in Alabang which is more convenient for  us. August 15 is his schedule for EEG and his appointment on his pedia-anesthesiologist who will assist him on his MRI ( August 22, 2012).

Preparations for Electroencephalogram (EEG)

Sleep Deprived EEG-EEG recording up to 1 hour (Awake and Sleep EEG)

1. Shampoo hair; do not put oil, gel, spray net, pomade, etc

2. Eat full meal.

3. Avoid coffe, tea, cocoa, chocolate and cola.

4. Sleep late at night before the procedure . (sleep @ 12 midnight, wake up early @ 4 am)

5. As much as possible avoid taking even a short nap from 4 am till the sceduled time.

Our schedule was at 8:30 am. We were at the hospital as early as 8:15 am but before the procedure started Chek blurted out that he is very hungry. Ate Mira advised us to feed Chek first, (second breakfast at hospital cafeteria) and the procedure started at 9:29. I prayed that Chek would sleep without taking any medicine and he did after two rounds of his favorite bedtime story the three little pigs (my version) and dad's 5 little monkeys story.

Sleepy dad and hyper Chek, waiting for EEG to start

Colorful Electrodes

Ate Ice and Kuya Vic, removing the electrodes.

Kuya Vic said, you look like Goku! Chek replied Goku Martin? hahaha

Met his pedia-anesthesiologist @ 11 am.
Had blood extraction @ 1pm (creatinin test for kidney function assessment).

Waiting for mommy to submit and finish MRI requirement @ 2 pm.

Well behaved boys @ Radiology waiting area

Treat Chek (ride on a race car) before going home. Trying to inject fun in an otherwise somber mood in the days activity.

You are so brave  Kuya! After the painful procedure and tiring day, you still managed to smile.
You will never be alone. Family and friends are praying for your health.
God will continue blessing you.

I love you, forever!

Aug. 22, 2012

Pictures taken last Aug. 22, 2012 on Chek's MRI.
Both of us (B and I) are so stressed not because we don't  trust  the doctors but because anything can happen. Chek was sedated because he really need to lie still.

Dad, holding Chek's hand.Chek did not struggle when the needle is being inserted.

This goes inside the IV (for sedation)

Meds are taking effect.

MRI. I was advised to go to  "waiting area". Apparently this room is off-limits to moms :)

Trying to pass time.

Off to recovery room.

All the staff were super nice to us. But even if they are the nicest doctors, anesthesiologist, nurse and lab technician, I still don't want to meet them any time soon :(

Chek's MRI result is free from tumors!Thank God. We are also thanking HIM for making kids naturally resilient. Chek's coping mechanism is truly remarkable...

Chek's First Day in School

I think I am more nervous than Chek was last June 14, 2012. Chek is only 6 years old but been to 3 schools already ( different every year) and St. Anthony de Carmelli is his fourth.! Aside from the fact that he is a transferee, he is also starting big school. I tried calming my nerves so as not to add tension for Him.

Around 7 am, all four of us ( Dad, Chek, Me and Lola Deling) went to school.

At the school entrance.

 

Immediately went to Check's room (206) . He does not want to let go of his Lola's hand.Actually he does not  want to enter the room! After numerous pleadings from us and teacher, he went inside (with us in tow) and found a vacant seat. Good thing his seat mate has a Mc Queen bag too. This started a conversation which eventually made Chek relax inside the class room and our cue for us to  leave also :)

What a relief! Thanks to Disney Cars.
Good luck Kuya:)

Have to go. I'm not allowed to stay in this floor. :)

Entrance Exam @ St. Anthony de Carmelli

We are going to move to our new "home" very soon. One of the things we are preparing is Cheks' transfer to big school. As early as January we've been telling him that he will have new school, new teachers, class mates and eventually new friends to which Chek tearfully replied, "I don't want to transfer and I already have friends". No amount of persuasion can convince him that transferring is not a bad idea.

Last May 12, 2012, I told Chek that we will visit our house and we will check a cool playground inside a school. I already made appointment so that  we can tour around and if Chek is still in the mood, he will have the entrance exam. A school staff met us and gallantly showed Chek the class room for grade 1, library, computer room and the play ground. She asked Chek if he wants to play with a computer (entrance examination)to which Chek readily agreed. I was permitted to watch. At question no. 5, Chek suddenly walked out from the room ,crying and shouting I don't want to take an exam. I want to go to Nazareth School not this school. I followed him and told him we cannot go out the school till he finish the exam. The teachers were so patient and also helped me in convincing Chek.. After 5 minutes, he went back and finished the exam without creating another scene. He passed the exams and got above average grade.

Not sure what changed his mind but after the exam, after a trip from the bathroom, he was thrilled and somewhat excited to transfer. He even said the school was OK to his dad! :)

Thank God to the wonderful staff!

In from of admin office

So happy. On top of the bench at waiting area.

With Teacher

Now, he is preparing his school things excited for the school year to start.
First day of classes will be on June 14, 2012.

Good luck to us.

Visita Iglesia @ Lipa City

This is the first time that the kids will experience holy week in Lipa City, Batangas. I prepared an itinerary (for Maundy Thursdy) that is suitable for their age and at the same time they will get to understand the Love and Sacrifice that Jesus Christ made for us.

After visiting the official website for Batangas under tourism (religious site), I decided that we will visit only 3 out of the 7 posted churches (due to distance from our house)  for our Visita Iglesia or church visit which is a tradition practiced back home in Bicol. I instructed the kids to have a power nap and briefed Chek that this is no ordinary family outing and there will be no side trip to his favorite fast food chain. After ensuring the kids baon, extra shirts, water, milk for Chey, biscuits, powder, cologne and hand sanitizer, we were ready to go.

The 3 churches:

1. Marian Orchard (Barangay Malabanan, Balete, Batangas):  A 5-hectare Catholic theme park conducive for prayers, meditation, friends or family bonding, with modest retreat house, Sacred Heart chapel, observation tower, picnic huts, shrines of different saints, meditation garden, Rosary garden, Koi ponds and fountains, etc.

First stop is the chapel.

 

Off to the Stations of the Cross. It's a downhill path. I actually expected the kids will rollover. They are too happy and free that it is super hard to restrain them.

On our way to the first station. It's a beautiful walkway surrounded by flowers, lamps and vines.

This is at the foot of Station 1. The kids are still hyper while we grown ups are sweating furiously!

Eleventh Station. Chek is already clutching his canteen. So thirsty and tired but no regrets.

Food kiosks are conveniently positioned after the last station. The benches are God's gift to our tired feet. So exhausted yet  still have big smile on our faces :) Shirt change also for the kiddos!

Enjoying the garden.

Last stop is the wishing fountain.

2. Lipa Cathedral of San Sebastian
Located in Lipa City, the parish church was constructed by the Augustinians in 1605 and was completed in the late 19th century.

3. Carmelite Convent of Lipa our Lady of Mediatrix
This convent of the contemplative order of our Lady of Mt Carmel was the site of a mysterious "Shrine of Petals" to a visionary.

 Both churches have on going mass, we did not get the chance to get inside. After saying a little prayer, we decided to go home.

The kids may not fully understand (now) the greatness of Jesus Christ but they have memories to treasure. In time for sure they will..

Chek's Graduation Day

After almost 3 weeks of practicing in school ( 2 weeks of which Chek missed due to fever). finally ....the big day !It's raining and Dad is not with us due to urgent call from office (Subic) We prepared early since we're going to commute. Start of program is 10 am but we were at CAP Development Center Lipa City at 9:30 am. It's so funny because the moment we step on the gates of CAP, three grown ups approached my chek (famous Joseph: the security guard, the School Engineer and the errand boy). It's nice to know that my boy is well loved. Because we were early, we still got the chance to take pictures.

I felt nervous for Chek. He's the first one who will go up in the stage to receive the diploma and I fear that he does not know his place because he did not attend the general rehearsal! It went well, with minor glitch only :)

Parents were not allowed to go near the stage  ...? but I sneak in to take a picture of Chek.

I love this picture! This is so Chek... so carefree. hehehe!
Below is his creative shot taken by official photographer (ART Studio). Nice..  Till now I'm wondering how they captured this shot. Total opposite of Chek's personality.

I love you Chek. Good luck. This is the start. Dad and Mom will always support, guide and love you. Congratulations!

Chek: First Love

Check at the age of five already have his girl preference which us grown ups labelled us crush or girlfriend. I remember when we transferred him to other school, he shed bucket of tears and said he will miss his friend. He does not want any other friend but her. When we went to Bicol to visit his Lola Deling, we have with us a map and he continuously ask the girl friends location! It came to a point when the girl's Lola and I decided that the 2 kids should meet and play....but this did not happen and eventually turned out better and healthier because Chek gotten new friends :)

A week after valentines day Chek showed me this drawing. Apparently it was given by a new girlfriend.

A day after, Ate Annie showed me two drawings. While waiting for their school service, Chek was not his usual makulet self. He was actually silent and he asked Ate Annie to safe keep his drawings.

Oh my,,,,love at is purest form.
I dread the time when I'm no longer his world. =(

Cheks' 1st Night Out

I don't think I can sleep well tonight for it is Cheks' 1st night out! I started preparing his stuff for the camp since last week and packed it all inside B's over night bag yesterday. He left home for BluRoze Farms at around 1 pm and tonight is the most awaited bonfire.

We missed it :( but got there just in time for hotdog roasting.

Initial plan was to to take a peek, check if my baby is doing fine, check sleeping conditions and should do that all in just 15 minutes because parents are advised not to visit (as much as possible). There was also a guard who made sure that we don't over stay.  Below is the dining area.

They stayed at Ifugao Hall, foam mattress were all over the floor and the air conditioning was really nice. For sure Check will sleep soundly tonight. I also met his teacher (Malou) on my way out.

  

Thank you teacher Malou and to all the other teachers who are really working hard  to make this camping a success! Just one look at Cheks' face and  I know he will treasure this moment forever.

As a working mom, I only have Sundays' to spend with my kids and  I want it to be extra special for them. Specially this Sunday because this is the day before Cheks' birthday. My initial plan for Chek's pre birthday party was the whole family will go to Fun Ranch-Tiendesitas, meet my college friends then go to Marikina to visit relatives.... but come Sunday morning, the whole family was too lazy to rise on the bed and prepare! I then settle on the idea to visit Lipa palengke (with the kids in tow)...=) Kids had a blast with the jeepney ride!

That was before we realized that is was the "Buling buling Day." Water was thrown on us. People were screaming, laughing and some are really mad for they are wet! Chey started crying. We hurriedly went inside the market and luckily the kids forgot the whole incident.

Next stop was SM Lipa. Chey started crying as soon as we boarded the jeepney. I called DAD  to fetch us in SM because Chey was crying so bad he was already shaking and wont let go of his Ate Jenny. When my kids are safe at home, I went out and took pictures of the "festivities".

To end this super unique Sunday, I cooked Chek's favorite sopas (chicken is not mixed with the soup but fried separately) and Dad's cupcake with icing on top (1st attempt).