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...