WHY IS IT SO HARD TO LIVE?

Sunday - September 19th 2010

A day that I couldnt decide whether to be happy and excited or worried and paranoid. (I even got the date of the first day at school on Monday wrong!)


Monday - September 20th 2010

My Facebook Status:

Another new star in the skies tonight, another angel earned his wings... Too young and too much sufferings... Wish I could say HE is in a better place but there is simply no place better than a mother's hug.

A tribute to Gabriel Liam, Forever 3...

Liam was diagnosed in March 09 with stage 4 neuroblastoma, unfavourable histology. After 7 rounds of chemo with surgery after the 4th chemo, he had an autologous transplant in early November 09. His treatment had been relatively event-free except for a lung infection after the 6th chemo, just before the harvesting of the stem cells. In Feb 10, during a routine post-transplant MIBG scan, there was an avid spot on the knee/s. Liam developed a port-infection shortly after treatment for relapse. This resulted in the port being removed and Liam going through the remaining rounds of chemo without a central line. The 4-5 rounds of relapse chemo and 14 sessions of RT failed to beat the monster. The disease continued to spread to other limbs and soft tissue despite active chemo.

Things I remember about Liam, forever 3...
Liam is the only son of Joan and Carlos. He is deeply loved by them. Liam loves to play with Ben 10 and power ranger figurines. He is very imaginative and makes all kind of noises when the aliens and power rangers are fighting a difficult fight. His favourite foods are fish and squashed pumpkin. But he loves Mummy's milk best. Liam likes to play PSP too and one of his favourite games is Ben 10. Sometimes, he accidentally deletes a game saved and Daddy has to play Ben 10, clearing all the levels again so that the aliens can be unlocked.

Liam likes walks in the park and he loves to play at the playground. He dances a good jig to entertain Mummy and Daddy. When he sees tears in Mummy's eyes, he tells her not to cry and that everything will be alright. When Mummy tries to feed him morphine, he tells her he wants to pray to Papa Jesus to take away the pain.

Thanks for being part of Liam's journey in his fight against cancer.

By Lili, another NB mommy...

[Please pardon me for not writing one personally myself as today is most probably one of the worse days in my life, (YET AGAIN) hence I am frankly incapable of anything except to cry...]



Tuesday - September 21st 2010

"Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit." - Napoleon Hill

It is barely mid-week and I will never imagine how the week which started on being the most memorable first day at school for Charmaine and Jase has taken such a drastic, extreme turn barely 1-2 days later. And the biggest irony is that I had even anticipated that today (with the wrong date I typed) was going to be a 'SPECIAL' day. However it WASNT the exciting, first day at school SPECIAL DAY.

Today is awfully painful and just ridiculously wrong. I started off my day with preparation made from last week, with arrangements for friends to babysit Jase in case Charmaine has a knee infection and requires a surgery immediately, rendering us inpatient. And I was worrisome the entire time, trying to prepare myself mentally for the fight against the infection bug on her knee.

Someone really has to drill the mantra of "Expect the UNEXPECTED" into my brain hard, if its possible. My emotions are running everywhere, and I have no idea how do I even start relating...

Charmaine's knee biopsy went well, the Orthopedic Surgeon Dr Morris came out within 15mins to inform me that it didnt look like an infection to her but nevertheless, we had to wait for the biopsy results to confirm that and it should be out in an hour. So that was what I thought to be the start of a good day, with a possible good news of no infection. However, the bad news would mean that we have absolutely no answer as to why her knee keeps swelling up and hurting her so badly because with no answer, we have no treatment... And its even a high possibility that Charmaine has to live and deal with it on a daily basis, with the fluid deciding when it want to swell and play the joke on us...

I have to tell you that I actually told Dr Morris that I was truly half hoping that she would tell me its an infection because at least I know it can be cleaned up and treated... Obviously, she opened her eyes so wide and said: "YOU DO NOT WANT THAT!" Well, yup, I did ask for prayers to make sure it isnt an infection... I am just really frustrated and upset at having to see Charmaine suffer the pain and immobility of her knee all so frequent... You know, EVERYTHING that she wishes for are just simple things, NO? BUT WHY DOES EVERYTHING SEEM SO OUT OF HER REACH and SO IMPOSSIBLE. She wishes to go to school, study, play, run and fret about homework... She wishes to have her own friends... I cant even stop crying typing these words out...

~~~ Monday @ School ~~~
Honestly, I cannot never do enough justice to the happiness that she feels whenever I tell her that she can go to school the next day. I was a total wreck on Monday, after dropping both Jase and Charmaine at school. The moment I bid them goodbye and barely stepped out of the building, I was already tearing up so badly, basically cried my way back home... Her excitement, her joy, her courage, her pride and contentment made me a very proud mother of hers... I was expecting her to want to back out the moment she stepped in school, but she was beaming with joy, waving her hand so happily at me, telling me that: "I will see you later after school when you come pick me up! Love you mommy, byeee!" It felt to me that she has waited forever just to say those words to me... and she was truly overjoyed to be able to finally say those words to me herself and just be on her own... Thats her first day.

On the other hand, I could tell that Jase wasnt as excited as Charmaine was and probably even slightly scared but he did well too! When I kissed him goodbye, he didnt cry, just said goodbye to me and went with his teacher. At the end of the day, it seemed like I was the one suffering from separation anxiety instead. The moment, that one day gave me a sense of hope, a possiblity that we are just one more step closer to our goal of living a 'normal life', something that is so seemingly distance from me...

~~~ Monday @ Liam's passing ~~~
And barely minutes after dropping them off, I received the dreadful phonecall that I knew would be coming... the horrible horrible news of the passing of Gabriel Liam. We were almost parallel in terms of diagnosis and treatment and I only met them early this year when we returned to Singapore. We were inpatient together most of the times, and we were the 2 mothers battling with NB relapse... I really hate cancer. NO AMOUNT OF GOOD OR BENEFIT can outweigh the heartache, the pain, the loss, the despair cancer brings to one's life. NOTHING. Napolean Hill who said that, obviously didnt meet cancer. I couldnt stop crying again... I wish to just scream out at the top of my voice at something, someone. I really want to run away to never never land, or just pause everything, make everything come to a complete stand-still. So that I dont have to live anymore... no love, no happiness, but also no pain and no sufferings...

The joy of Jase and Charmaine's first day at school was completely overshadowed and swept away by the overwhelming grief in my heart...

Which is why I couldnt even blog...

~~~ Back to Tuesday ~~~
My Facebook status:

kept pushing, pounding and clawing against the dead wall. It didnt even flinched. Promised myself not to cry infront of Charmaine but I failed again today... :-( DAMN YOU CANCER! LEAVE ME and EVERYONE I LOVE ALONE!!! I HATE YOU!!! STOP TORTURING ME LIKE THIS!!!

So while waiting for her biopsy results, I requested to meet the doctor to discuss our plans...

I am still finding it very tough to re-live those thoughts by typing them out again, so please bear with me, here is an excerpt taken out from an email I typed to Dr Aung in Singapore...

And NOW, the biggest shock today is that Dr Modak is thinking that there is a possibility she has progressed. :-((((((((((((((
Well, it started with me questioning how is her LEFT FEMUR, and they started to look at the MIBG scan and than they said they thought they saw something very faint and probably questionable in her left femur, near the knee area.
Obviously, they said the MRI picked up disease on her left femur as well. I said we sent them the MRI done in July but for some odd reasons, they dont have it! :-(

Finally they dug through and found the report of the MRI done on July 22nd. Apparently, the new spot we saw is now bigger, on her left femur...................................................................

Dr Modak said he needed to go back and discuss with the radiographer again.... will let me know soon............. (their idea of 'soon' never felt soon enough though.)

Hence, amidst my mad crying, I asked will the plan change if there is indeed something on her left femur?
Dr Modak said maybe they might consider high dose chemo if there was something on her left.... :-((((((((((((((((((((((((((((

I cannot think very well now and just cant stop crying... I am still waiting for someone, anyone to call me and inform me of her knee aspirate results and hopefully, their plan!!!!!!!!!!! ARGH, its really frustrating that they seem to only read the scans when I asked and questioned it......................................... I know they are busy but I've already given them 3 weeks................................................... I honestly feel that Charmaine's case has been shelved aside... I would have zero complains if she is CLEAN, I am more than willing to let them review other cases first. BUT IF indeed Charmaine has progressed, we have been doing nothing for 3 weeks! Can you feel my desperation. :-(

Besides, MIBG result was OUT in the first week of September. Aiya DR AUNG, I am so paranoid and freaked out now. With Gabriel Liam passing, I am going even more insane here. :-(

Half my mind is thinking if indeed we have to do high dose, should I rush back to Singapore or HOW?!?!?!?!?!?!

Sorry, I know I should wait for them to get back to me but i really needed to cry out aloud to someone...

I cried the whole of Monday till Tuesday and now my eyes are swollen and hurting so bad...

I emailed the doctors and nurse practioner yesterday and only got a reply at 6pm which said this:

Please come in this week to get chemo consent—the team would like to start chemo next week

AND AS I AM TYPING THIS, I RECEVIED AN EMAIL FROM A DOCTOR.

THEY CONFIRMED SHE HAS PROGRESSED. I JUST WANT TO DIEEEEEEEEEEEEEEEEEE RIGHT NOW I COULD.