A life so poor..

I remember when Papa D was still around, his fave way of describing himself was what a poor life he've got! It was at some point making him sound so whiny and so..., helpless. I actually could feel his helplessness, right now when I am feeling it for my poor princess.

There's no one to blame except me & Papa D for giving Rianne a life so poor. So sickly that I fear I will lose her just like how we lost Papa D to the dreadful cancer.

Apart from already been confirmed of inheriting her daddy's genetic disease NF1, Rianne has started showing the nasty effects/implications from the disorder. The very first time she experienced a headache was in August. We didn't quite know what to do, or how to react to the unusual complaint from Rianne. Hence, we only took her to a doctor a day after the occurrence of the headache that came with vomitting. The A&E doctor assessed Rianne to be well and probably suffering from a stomach flu which will just go away in a day or two. I was advised by many people at work to treat it seriously, and send Rianne for a scan. I intended to bring it up to the genetic specialist whom Rianne was seeing twice a year in her appointment this month. I couldn't wait til then. Rianne had another headache in Sept, and this time it was more severe.

My mom did not hesitate to send Rianne to the A&E right after she vomitted twice at school. She actually threw up for the third time at my neighbour's door when she and my mom were making their way to the hospital. I am somehow very grateful to the A&E doctor who decided to send Rianne up to the ward for further observation. Rianne was warded for a total of 5 days, and had a drip on for 2 days.

Our genetic specialist, Dr Lai came by to check on Rianne and ruled out the possible viral infection which the ward doctors have diagnosed. She has instructed for an eye test to be performed, and also a MRI scan to be fixed at the soonest available date.

Rianne had the MRI done just this Tuesday, and dramatic I would call it an experience for my 3.5 year old toddler and myself as well. Fasting aside, Rianne has never had anesthesia before. The anesthetist was discussing the various administrations with me, deciding which would be best with the least trauma to Rianne. I know Rianne can be calm with the gas mask on, so I asked for that to be administered instead of through an injection. Indeed, it was a smooth anesthesia with Rianne dozing off within minutes of inhaling from the gas mask. It was the post anesthesia which drove us a little nuts, and again, helpless when we could not do anything to ease Rianne's discomfort except to take turns to carry her when she asked for her grandma or me.

The detailed report of the MRI scan wasn't ready when we needed it, so the ward doctors actually discharged Rianne based on the preliminary results. However, they have told us that Dr Lai has recommended us to see a neurosurgeon which could be beneficial. I didn't think much of that referral since it was Dr Lai's recommendation so it must be only reasonable.

We went home after a 2D1N stay in the A1 ward. Rianne really liked the room as it practically got everything exclusively for her. I took a look at all the papers from the hospital, ensuring that I marked all the appointments onto my calendar. It was then I actually saw the preliminary results of the scan in writing. Those words never got off my head since then. They were like imprinted onto the back of my head and keep reciting on their own to me!

"Preliminary results of the MRI scan showed optical nerves thickening on the right, enhancing post-contrast." I thought there was nothing found from the scan, so I refused to believe what I saw. However, I know I can't deceive myself. As I typed the sentence onto Google search, I could feel my heart skipping beats like it's on a skipping routine. I didn't want to open my eyes to see what I saw on the Internet. It is not exactly negative, neither is it positive.

It seems that it is fairly common to spot optical nerves thickening in children with NF1. But, some other articles have also mentioned that the early symptoms of a glioma (brain tumor) is associated with optical nerves thickening which gives rise to headaches, nausea, vomiting and even loss of vision.

We are seeing the neurosurgeon later, so I really hope to get a clear explanation of the scan results from him. Please, please let my speculations be wrong..