Judas started vomiting everytime he is being fed and his neurologist asked for a CT scan. Based on the results, the tumor became bigger from 4.8mm to 5.1mm in a span of 23 days and the Oncologist wants to start the chemotherapy as soon as possible even without the portacath.
Yesterday, August 06, 2019, Judas had his first chemotherapy session. Carboplatin and Vincristine are the chemo medicines that he will be needing for the entire medication timeline and we are hoping that his tumor size will start to reduce because as of this moment, his hearing and vision is no longer working due to the pressure in his brain.
All the doctors agreed to go with the chemotherapy instead of the operation. The plan is to shrink the size of the tumor as small as possible. The doctors also wants Judas to have a portacath implant because the chemotherapy drug might burn his vains.
The chemotherapy will be conducted once a week for one year. It costs about 35,000 PHP per session. That includes the medicines that he will be using, the chemo procedure fee, doctors fee, and the hospital bill for a 24hour confinement.
He also needs to have an MRI scan every so often to check the size of his tumor which would cost about 15,000 PHP.
We transferred here in National Childrens Hospital last July 24 from St. Luke's BGC due to financial reasons.
After looking at the MRI scans in the ER, we were told by the neuro surgeon that there is a huge possibility that he will never wake up again, pee until all fluids inside his body gets drained, die while being operated or be permanently blind. He then asked us if we are willing to take those risks. He also said that we can opt out for the operation but since the tumor is continuously growing, his shunt will eventually fail in a few months and he will eventually die.
As a parent, we are always willing to give anything uo for our kids, we are always ready to give anything up for them and we will do anything innour power to keep them safe and well. My wife and I both know that the chances for a successful operation is low but we accepted that risk. The surgeon then said that he will conduct the operation on the 31st of July. Our hearts were broken again for the second time.
When we went back to the room, my wife and I started to have second thoughts about the operation. We were both thingking of just going home and enjoy the rest of his days at home wherein our son will be more comfortable, he can sleep without being disturbed by the nurses every couple of hours, IV insertion is not needed and drink his milk through his bottle instead of an NGT.
Two days went by and a new doctor came. The surgeon referred us to an Oncologist after he got the final biopsy results from the previous hospital. It was then explained to us that the type of tumor that he has is a low grade glioma suprasellar mass which is highly responsive in chemotherapy. We now have a new option. A better one in our own opinion because the risks are lower and the success rate is higher but before we decide, the Oncologist wants us to attend a family counseling meeting with all of my son's doctors and hear what everyone has to say because the surgeon wants to conduct the operation while the oncologist wants the therapy.
The next day, the surgeon came to our room, this time he was smiling. He said that he would want us to go with the chemotherapy instead of the surgery because it is safer for Judas.
I was laying on the hospital bed when the nurse handed me a healthy baby with his head tilted and congratulated me for having a son.
My wife and I were so happy because she had a tough time during her pregnancy due to cyst on her ovaries that causes massive bleeding every now and then.
3 days after, we went home to our tiny little place and started a new chapter of our lives together with his big sister.
A few months went by then we started to notice that his weight became stagnant so we've decided to see a doctor and we were advised to give him food supplements to manage his weight. We also noticed that his eyes were shaking a bit and one of his doctor asked us to see an ophthalmologist.
Last June 28, he started vomiting so we went to the hospital and he was diagnosed with a viral infection inside his stomach. We were sent home after a few days but we noticed that he was always sleeping and only making minimal interaction with us. We went back to the hospital due to dehydration and was given a different diagnosis which is functional constipation with upper respiratory trac infection and was sent back home.
He was on the same condition for the next 2 weeks and we were so alarmed because he was so weak and restless so we've decided to see a different doctor.
His new doctor noticed that his head was larger than the average which we tought that was caused by him being under weight. We were sent to the emergency room for some tests and was advised to be admitted for the 3rd time.
A few tests were made and one of it was a head ultrasound. The tech placed the apparatus in head and paused after a few minutes. Then we were advised that he needs to have an MRI for a better visuals of his brain. One of the senior doctors came and asked us to transfer in a Pediatric ICU because of the suspected mass in his head.
The next day, he had his MRI and we were told that there is a lot of excess fluid in his head which is hydrocephalus that was caused by a tumor. The tumor is blocking the normal flow of fluid that needs to be disposed that's causing his head to swell and block his vision. We were also told by his neurological doctor that there is an immediate need for them to install a VP shunt to drain those fluids.
Our world stopped, my wife and I cant seem to find the words to comfort each other, I can't even stand from where I was sitting and the only thing that we could do was to cry. Our hearts were broken into pieces and that was the most painful thing that I have felt in my 31 years of existence.
The next day, the neuro surgeon inserted the VP shunt to address the fluid in his brain. We were told that the operation will only take 1 hour but it lasted for 3, that was the longest 3 hours of our lives. We were told that his vitals were stable before, during and after the operation which was good news for us.
His head circumference went down to 49cm from 50cm the day after the surgery. He is now responding better. His pupils reacts to light. He now needs to regain his strength and be stronger to be prepared for a major operation, hopefully in about two weeks but we are out of resources and badly needs anyone's help financially in order for the tumor to be removed in his head, for him to continue living and hopefully to live normal.
We are currently in desperate need for your financial help.