An additional day in our treasure chest!

Time to update again. :-) [A post written on 20th July but somehow didnt get published]

Can you sense my happiness?

Well, things have not been all rosy and easy. However, if we look at each day's tiny little blessings, then I would say that the feisty family is definitely blessed in more then one way. The simple fact that we got through last Friday's sudden turn of events with an indwelling urinal catheter is truly a miracle. Of course, it's not the perfect miracle that we have all been praying for but I will take it gladly.

I was a total mess on Friday. Rushing Char to Emergency and being told to head to the resuscitation room is scary beyond words. I was barely functioning because everyone was on high alert and Operating Theatre was fully prepped for a spinal cord decompression surgery. I didn't want to freak my princess and hence was trying my very best to act normal, look alive with a tears filled face. My white lie to char when she questioned my sadness and tears was: "I'm feeling so sick. My tummy is hurting and I feel nausea. That's why I am sad." Char said: "I'm sorry mom that you have to take care of me even when you are sick. Thank you mom. I promise I will take care of you next time when I'm old and you are sick. I will stay with you in the room when you take picture. I will feed you. I will also bath you and I will carry you to the toilet. I will wash your backside for you." Tears couldn't defy the gravity anymore.

When Char was wheeled into the MRI, I was sitting outside all by myself, crying non stop. I was desperately praying and cursing the damn cancer for being so cruel to my innocent child. I tried to prepare myself for a long night of surgery and recovery while being insane. I don't even know how to narrate to you. Another mom was just telling me the other day how she doesn't dare to tease others that they are behaving as if they are characters in a drama. Because the truth is our entire life is somewhat oddly similar to those TV dramas! With all the crazy scenarios you thought were ridiculous and only found in dramas to hype up the ratings are actually real life scenes in other people's lives!

You cannot even begin to imagine my fear when I saw our neurosurgeon Mr Seow walked out of MRI to inform me the 'good news' and the 'bad news'. Usually I'm in this 'semi-conscious' zone when I'm about to hear news of scans. It's the moment that could turn your world upside down - quite literally. And it's that simple. Just in a matter of a split second, you might find yourself dropping from heaven to hell or shooting from earth to heaven all in one second. Personally, for me to get through that is to remain 'semi- conscious' (for lack of a better word). It's like I have to be conscious enough to understand the news rationally and yet I cannot be too conscious because that will render my knees weak and I might slip into a coma there and then.

Anyway, the good news was no surgery was required because there was no spinal cord compression. However, the bad news was the tumor on her sacrum seemed to have grown and might be pressing on her nerves causing her bladder some sort of pressure such that she's unable to pee. I smiled for a few seconds there, hearing no surgery, no ICU stay and no numerous needles and tubies... But then I quickly asked, what's next? I had already called up our radiation oncologist, Dr Lee, informing him of the bladder issues before I even left home and so everyone was updated and aware of our latest situation. Radiation (as what I had anticipated) was the answer it seems.

We were discharged the next day on Saturday morning. But we were disappointed that we had to miss Char's Primary 1 School Open House. :-( I was probably the most upset. Jase was performing and we were all so excited to watch his performance. Attending Char Primary 1 Open House is a huge milestone that I had been looking forward too. Although our future is so uncertain, simply attending her Primary 1 Open House itself is one way I stay focused on the right path, the path to light and hope. The path to our miracle. To say I'm disappointed is an understatement. I felt like we had been thrown a huge boulder and I am crushed. It's a small insignificant non event really but somewhat I was irrational about it. Maybe because our lives now are filled with small insignificant non events that actually count towards our treasure chests.

I guess I lost my focus there for a bit. Instead of rejoicing in what I have, my sight was unfortunately set on what I've lost. It was silly. I'm glad that once we arrived home, I am reminded of how blessed we are to simply be home at that moment. And not some ICU bed, not anywhere away from home. :-)

Yeah! We are home!!! Everyday is an additional gift. Every morning, Char would get up as early as Jase and me so that she can send her brother to school. And every day, she will stress about what to prepare for her brother's lunch when we fetch Jase home from school. Last week, she made egg salad sandwiches and peanut butter sandwich daily. This week, we were unable to fetch Jase from school because we had to go hospitals daily for various appointments and she is actually rather upset. However, she has been sending Jase to school every single morning. As a mother, this is truly my greatest gift. :-)

Just a few days ago, I received an email from a donor saying that her friend who is recently diagnosed with cancer is inspired by my little Char. I'm happy to know that even during her difficult and tiring time, my Char is still able to give others encouragement and hope. Whoever you are, walking this journey is never easy. Let's fight on! It doesn't matter if you are an adult, a senior citizen or a young innocent child, no one should have to suffer and live like this. I know it's different being an adult cancer warrior from a child. I cannot even begin to imagine. Because with understanding comes more fear... At the end of the day, to me... We are all walking a painful journey which hopefully will end in the miracle we are all praying for.

On a side note, I do have a purpose in writing about the previous paragraph. After we went to NYC for treatment and coming in touch with so many of our fellow comrades in the pediatric cancer world, I'm somewhat influenced by the way information is shared online in such great details with treatment options, side effects and even simple descriptions of how one gets through a day of hell is so powerful. I've learnt more reading the blogs of all these kids then from doctors themselves. It's like a big responsive encyclopedia where you can ask and get answers from someone who has actually gone through the actual treatments and know first hand what to except. It's nothing like reading from medical journals. For awhile there, I found myself writing the same way as our friends in NY, sharing in great details Char treatment options and side effects, our entire thought process. However, as time passes... I somewhat figured that most of our supporters are not folks who would understand medical terms and specifically Neuroblastoma treatment options, which by the way is great news. We don't have that many Neuroblastoma kids in Singapore, thankfully. Hence, as time passes, I found myself getting back to my narrative writing, usually surrounding our roller coaster emotions and probably a large part of random ramblings.

Today, I feel somewhat inspired to share the experiences we have had walking this journey, specifically some of the observations I've made in the medical world. Some of the experiences may be particular to Singapore only but some of the experiences could probably be found in any medical world anywhere. For those of you who have been following us over the years, I'm sure you would remember some of my frustrations with the systems and regulations. Nonetheless, systems and regulations are not what I want to ramble on tonight.

Instead, I like to highlight to some of you who are unfortunate to be on this journey like us. The most important thing on this journey is to find yourself an oncologist that you can trust. I'm certain there are parents or adult patients who share a different perspective from mine and there's absolutely nothing wrong with it, the important thing is to find one who shares the same perspective as yourself. And by trust, I mean that. There are a lot of smart doctors out there but medical profession is more an art rather then science. It's all about judgement calls. You want someone who at the very least is supportive of your every decision. Please do not hesitate to seek a second opinion. There truly is nothing wrong with it. I don't know if it's a cultural issue or what. But I was one of them. I had sort of refused to seek a second opinion when Char was diagnosed. Part due to my ignorance, part inertia. It was too much to ask of me. My world just literally crashed and I was too 'dead' to seek another opinion. And I had been brought up to believe that KKH is THE BEST Children's hospital in Singapore. Why would I even want to seek elsewhere?

Now that I look back. The day that I went to NUH to seek a second opinion with Dr Aung was truly the best thing that can happen to Char and me. I honestly cannot imagine WHAT could have been if not for Dr Aung. I can safely say that without Dr Aung, my little girl probably wouldn't be here, walking her brother to school daily inspite of her own suffering and pain. And all it took was one 45mins consultation for me to make up my mind to switch under Dr Aung's care. That was truly the smartest thing I ever did my whole life.

I have no doubts at all that had it been other doctors treating my princess, with this progressive disease, many, if not all, would have tried one way or another to convince me that there isn't any hope and that I should be bringing her home and keeping her happy. No one would be able to tolerate my irritating demands, my constant pleads to bring in another non FDA approved drug, my annoying hounding. No one but our dear Dr Aung. Believe me, I am not exaggerating when I say that. Imagine the many requests I've put Dr Aung through: - Can we bring Char to Japan for any trials? Can I bring Char to China for alternative treatments? Can we apply to import in the non FDA approved drug Millennium? Can we try to bring in another non FDA approved drug Nifurtimox?

It's more then just tolerating my requests. I'm sure other doctors would at the very minimum listen to me rant and plead. But Dr Aung has actually agreed to my every plead. She asked, she wrote, she applied, she checked, she enquired and she made sure she tried as hard as I have.

So, my point is GET a second or third opinion. Get the one doctor you can trust to work together with you and not against you. It's not about being right or wrong. Because at some stage, there is no black or white, it's all grey and it's all about what you want. I want to fight for my child and to quote other parents, "Even if it's death, we will die fighting." As parents, somehow or rather, we will know when to stop... The crucial thing is not to have a doctor we depend on entirely to tell us to stop when we don't feel that the time to stop is here yet...

Of course, the reality is that there are smart doctors and there are compassionate doctors. There are practical doctors and there are doctors who would go the extra miles for you. Find the one you can entrust your life or your child's life onto.

Getting the right doctor is going to make ALL the difference between hope and despair. Just as everyone tells me to remain hopeful, it's crucial to have a supportive doctor to even have any hope to hold onto.

Secondly, while we should trust our doctors, it never hurts to learn more yourself. There are some smart doctors who never like parents like myself, the type who questions and is in need to understand as much as possible. Those are the doctors I can never work with. I need someone who can be patient to my questioning and my need to learn more.

Hmm, just my 2 cents worth. I hope that my sharing would help those on our journey in a small way.


Love,
Cyn mommy