My Progress

A recap after completion of the Chemotherapy.

Liam Samuel or Yam-Yam as we call him, had completed his chemotherapy in August 2019 and a month after he had to undergo a series of test and scans.  One of the scans was an MRI. While reviewing the results with his doctors, we found out the extent of the damage the TUMOR has caused him.  A compression of his spinal cord.  A dreaded effect of the tumor that was pressing his spine.  Injury to the Spinal cord is permanent.

We were referred to a development Pediatrician in St. Luke’s and was informed that Yam-Yam has Global Developmental Delay as his diagnosis.  So, he is delayed in all aspects and requires wide range of therapy to catch up.  We moved back to Singapore on October of that same year and continued the monitoring and follow-up checks in KK Women’s and Children’s Hospital.  They referred us to the rehab team which Liam was casted for an AFO, started Occupational Therapy, Speech therapy, Physical Therapy and enrolled to a nutritional dietician to monitor his progress.

However, the unexpected turn of events in January 2020, while we are in a vacation in the Philippines for the Christmas break.  Yam-Yam got sick with an unknown virus that caused him to go on ARDS, his symptoms were very similar with #COVID.  He was warded in St. Luke’s (BGC) ICU for almost 50 days and was even subjected to ECMO.  Yam-Yam was blessed and given another chance, we went home February 2020 on oxygen support, and he was weaned off oxygen by June 2020.  During these times all his developmental therapy was halted, and we just focused on making his lungs recover.

A challenge that almost broke me.

We were supposed to return to Singapore in July 2020, but another unexpected news was delivered to us.  Liam might be suffering from Neurogenic Bladder.  A condition wherein your bladder does not have the ability to fully empty with urine, making you prone to Urinary track infection and kidney infections. My husband and I must return to Singapore and heartbreakingly left Yam-Yam under the care of my parents and siblings.  My dad untiringly went and accompanied Liam to every appointment and admissions.  During one of the admissions in St. Luke’s he underwent a 7-day antibiotic treatment due to on/off fever and urinary tract infection.  After the infection was cleared, they proceeded to a test that they call Urodynamics.  This test will determine the bladder’s ability to void urine.  Unfortunately, Liam was diagnosed with an Overactive Bladder.  His bladder kept on voiding, or in layman’s term he kept on peeing even if his bladder is not yet full. To make it even worst, when he pees he’s not able to fully empty his bladder and the remaining urine was the cause of UTI and other infections.

After the test was done, we were left with a decision to have Liam undergo a major surgery which they called Vesicostomy.  This is an opening created by the doctor between the abdominal wall and the bladder.  In short, Liam will instead have a hole in his abdomen to empty his bladder and he will no longer be able to pee the usual way.  This is what I call the “Easy way out”.  My husband and I had to contact our oncologist in KKH and requested if she can help us secure an appointment with a Pediatric Urology on a very very short notice.  Fortunately, God heard our plead and we were able to secure an appointment even without the patient being present.  The Urologist in KKH was kind enough to explain to us Liam’s diagnosis in St. Luke’s and explained other options.  What I can recall was she mentioned the Vesicostomy was the last resort.  Typically, with Liam’s condition we can do Clean Intermittent Catheterization (CIC).  We decided not to proceed with Vesicostomy and shifted to another Urologist from University of Santo Tomas (UST).  There Liam had went through what they called Botox Therapy for the bladder, this is a temporary treatment that will allow his bladder to expand and relax.  After the treatment, his bladder pressure returned to normal and though he still cannot empty his bladder, but we can reduce the frequency of CIC to every 6hours.  Unfortunately, upon returning to Singapore the urologist in KKH do not recommend Botox therapy for a temporary aid to overactive bladder, so she reverted to CIC of every 4hours.  But this is good enough to control UTIs and infections.

Resumption of Physical Therapy

Whew! That was tons of challenges for us. Came out victorious, with God’s grace and lots of blessings.

Able to sort out managing clean intermittent catheterization was a relief and this would mean return to a normal smooth life for us. This would also mean Yam can now move forward with development in terms of physical movements, motor skills and balance.  We still continue with his physical therapy with KKH, but we bump into another problem.  This time the schedule that was given to us was every 6 weeks which I thought would be a very long interval if I wanted to have him catch up faster.

During one of Yam’s sessions with his PT from KKH they required us to purchase a tilting bench to use for his home Therapy.  I was sourcing online but I could not find any cost effective or second-hand tilting bench.  I was lucky enough to come across a builder of therapy equipment from the Philippines and was able to secure the tilting bench for Liam to use.  They are very accommodating enough to customize the bench to be able to be transported easily.  A custom collapsible tilting bench!

With every challenge faced, there are blessings in disguise that provide solutions to all these challenges, blessed indeed!

What makes it more exciting is through this builder, we are able to meet someone who we will forever be grateful for.  Through Dev Depot we met Dra. Hossana Camacho, she helps our Yam-Yam achieve what we were told before that he cannot do or should I say for his case maybe near impossible to do.

“Faith doesn’t make things easy; it makes them possible”

“Everything is happening exactly as it’s supposed to, with hidden blessings that we’ll soon understand.  Sometimes what appears to be a challenge is actually and answered prayer in disguise.”