We're at Day 3 of 5 for chemo

We are at Day 3 out of 5 for our chemo today, sitting at the Waiting Area for an Isolation Room.

This is Charmaine’s Cycle #14 chemotherapy and it doesnt look like we are nearing that ‘End Point’ I’ve always been praying for and looking forward to... However, she is here, watching her ‘High Five’ DVD and singing along to the tunes. And this IS the moment that I should treasure and consider myself blessed.

The past week has definitely taken such a toil on me, both physically and emotionally. In fact, it felt like the month of September was just full of turns and twists; tears and pain, and quite frankly, nothing memorable.

Even as we speak right now, the diagnosis is still somewhat inconclusive and our treatment plans are also somewhat in limbo.

Each doctor within the NB team seem to have extremely different opinions and it's honestly very hard to know who is correct. By extremely different, I do mean it literally.

One day, a doctor walked up to me and tell me its “MUCH IMPROVED”, as compared to the clean results we had in Singapore. I just crumbled. Yes, it could have been worse but it still hurts to know that its not clean.

Next day, another doctor walked up to me and told me its bad, because it looked like progressive disease to them.

For the non-cancer savy, PROGRESSIVE is NEVER used in a good way in CANCER WORLD.

And then I would cry a sea of tears, breaking apart completely and just wishing that I will just stop breathing literally. I am not sure if I was even functioning but I just couldnt pick myself up... However, as much as I wish to freeze time and turn everything to a complete stand-still, life continues... And I continue to function after the tears dried up.

And before you know it, another doctor will give you another picture...

Yesterday, after all the loud crying, insane screaming and quiet sobbing for days and days, we met up with her Radiation Oncologist, Dr Suzanne Wolden.

For the first time in days, I am suddenly seeing a very very very faint light coming through our tunnel of complete darkness. It isn't the light that I was wishing for, nonetheless, her compassionate self and her concern over the diagnosis gave me a sense of warmth I so needed.

Of course, nothing went according to plan yesterday. WHY am I NOT SURPRISED?

Yesterday, the plan was for us to go in and meet with Dr Wolden, to discuss all the dreadful side effects of the higher dose of radiation that I had decided to do to both Charmaine’s femurs and possibly stunt her growth, partially or completely. It was really not a morning that you will wake up to, feeling bright and happy.

Dr Wolden was our Radiation Oncologist last year when we radiated her liver and I remember her as one of the nicest ladies, truly having a passion in wanting to help us treat our kids. We talked to her assistants while waiting for her and her assistants were just as good as she is. Finally, when Dr Wolden came, the first thing she said was:

“I’m honestly not convinced that Charmaine is having progressive disease. Unless I am very certain that her disease is indeed progressing, I wouldnt want to succmb her to all these radiation. And I just called Dr Kushner, he said that he doesnt know what is going on either. The team will discuss this evening again and we will let you know the decision.”

I didnt know what to think or feel. I’ve gone through TOO MANY UPS AND DOWNS (actually it felt like it was just going down, and deeper down...) the past week, I honestly dont know what is real and what is not.

What is truth at this moment and what is real factual truth.

We mainly talked abt her right femur. Hence I asked about her left femur and she said she thought the same of the left, that it was not clear cut progressive. I asked for her opinions on what she felt was an option for Charmaine. She said she would actually feel comfortable to not do much, maybe a light chemo, allow Charmaine to have a good quality of life and re-scan in 3 months, after Christmas, to track the results and have a better idea of what is going on.

I know she is not an oncologist that treats Neuroblastoma specifically but more a radiation expert, and that her opinions may not count towards the team BUT her words have most certainly provided me a MUCH NEEDED perspective. THE perspective that I never thought was possible because everything was so grim and dark when we discussed with the other NB experts last week and who am I to question their judgement.

Amidst the grey skies, it suddenly dawned upon me that the day I met Dr Wolden was Tuesday and if i hadnt begged for another option, Charmaine would have already been on Day 2 of ICE --THE CHEMO THAT WILL COMPLETELY WIPE CHARMAINE IMMUNE OUT, AND MAY CAUSE HALLUCINATION, CONFUSION, LOSS OF MEMORY. I even had one father email me that his son went into a semi-conscious state while doing ICE. It IS THE CHEMO I’ve always dreaded.

Oh God, I simply couldnt even imagine WHAT IF I had gone ahead with their suggestion of ICE and now, this doubt of HOW true that the disease is progressive is being questioned and brought up, what terrible terrible mistake would that be!

I have not heard back from anyone yet. We are doing a light chemo now which gives me a little comfort that we are not giving her cancer cells a break to grow. And hopefully, this will give the team some time to re-organise their thoughts and plans. There are many many questions and decisions going through my head each day, but without a proposal from the team, I cannot do anything except to worry and stress.

On top of cancer, I have to continually worry about her knee which is acting up this morning again. SHE NEVER GETS A BREAK. And last weekend, her temperature spiked up and she had a bout of FEVER. [It was another drama on its own, but I am too physically drained now to even start narrating it.

I had SO MANY BREAKING POINTS last week alone that I had no idea how I am even alive today. I fear about her cancer, I worry about her knee pain, I am highly stressed over her having fever.

Jase gives me a different set of worries, making sure his homework is done, making sure he is fed, making sure he goes to school on time, making sure that I can pick him up from school on time...

“I just want to go home...”

“I just want to hug someone and cry till I fall asleep.”

“I need to give my heart a break, my mind a rest, my body a good sleep... maybe than I can pick up the pieces, carry all my worries and fears and continue to plough forth...”

Sorry I cant continue more, because this just makes me want to cry so bad...

Anyway, I just want say that despite all the ups and downs, all the insanities in our lives, we are OKAY. I am sorry to have made everyone worried... Please continue to keep those prayers coming in. I honestly NEED THEM more than ever.

And, PLEASE CONTINUE TO VOTE. We dropped to 3rd place... THANK YOU EVERYONE.

Love,
Cyn mommy

~*~*~*~*~*~*~*~*~*~

More on how to vote...

Click on this link:
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

Click on "Vote for this idea" button.




I couldn't manage to printscreen this part but a pop up window would appear prompting you to log into facebook or to use email @. If you've got Facebook a/c, logging into FB is mush easier and faster.

Within a few seconds, you will be directed back to the original page, then click on "Vote for this idea" button again.

Make sure your "Votes left today" changes to 9 to ensure that your vote has been submitted.



Today's the closing date. This idea is up to its 2nd spot again (YAY!) and we've to make sure it remains there in order to receive funding as only the top 2 ideas would be considered. I'm not too sure if it's according to GMT or what but let's all just vote.

Thank u!

Love,
Jolene

Decision made, Tears Dried

I made the decision to put my baby through much higher doses of radiation for both her femurs and possibly stunt her growth permanently. It hurts so badly, just imagining what I am putting my own flesn and blood thr, but I will take whatever consequences and side effects just as long as she beats cancer and is alive. The thought of giving up has dried up like the tears, no longer there. The reality is getting tougher with each single day and the journey will be nothing that I've ever experienced, am sure that I will be beaten a couple more times. I will cry, I will think of giving up and I will be devastated more than a million times, but I will get up, dry my tears and do whatever it takes to survive.

Cyn mommy

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.

Sept 20th 2010 - A special day!

YES, guess what! Charmaine is going to school tomorrow!

~~~SCHOOL IS STARTING~~~
And SHE IS SO DARN EXCITED! Its been her wish to go to school like her brother, Jase and she is SOOOOOO looking forward to her first day! (Although she doesnt realise that she will not get to go to school on Tuesday because we have her knee biopsy... decided not to ruin her fun for now.)

But yeah, lets focus on the good and positive! Finally, Charmaine is going to school and I am one very paranoid mother, excited but yet so anxious and worried, all in a good way. Hmm, I dont even recall myself being so worried when I first send them to school years back! Lets keep our fingers crossed and pray that everything will go smoothly for Jase and Charmaine tmr! Going to school in NYC is so different and I am starting to appreciate Singapore school system even more, despite the stress and all!

~~~Liver is normal~~~
The other good news that I have to share is that her liver MRI turned out to be nothing but a good scare. Hence, the conclusion is the one site that is still having disease is her right femur. I will take that, although I had desperately wished that this was not the case but yes, I will take that because the alternative could have been worse. Continuing to look on the positive!

~~~Charmaine is walking and dancing again~~~
Yes, you heard me right. From a week ago of totally not being able to move, she started walking on Thursday and was even dancing to a show last night! This is my life, this IS OUR LIFE. :-) Justing having a charmaine with no pain and being able to walk is a gift. A BIG GIFT. A gift sometimes I take it for granted, and forget that walking is not a given, but a huge blessing. Looking at their backs, watching them walk down the streets, holding their hands, giggling and talking is something that can be taken away from me anytime... Hence, I am thankful, so grateful that I get to watch them do just that again! Its been a roller coaster week for me, with so many scares, so many twists and its not about to end yet.

~~~Knee Biopsy on Tuesday~~~
On Wednesday when I suddenly found out that Charmaine was scheduled a knee biopsy on last Friday, I was shocked. Partially because of the way things worked here; because I wasnt informed of it until I tracked down one of the Nurse Practioner, it really felt that information was not passed on efficiently. Especially, when I needed to arrange for Jase to be taken care of should Charmaine get admitted. And of course, I was also very worried and concerned abt the recovery from the knee biopsy. Nonetheless, when we met the Orthopedic Surgeon (finally!) on Thursday, she said we couldnt proceed with her biopsy on Friday as she was on antibiotics which would have made her results inaccurate. Great, now I know the different teams dont exactly communicate amongst themselves. Not a big issue this time but argh! Hence we are postponed to Tuesday instead and she got her last dose of antibiotics on last Friday. And from Saturday till her biopsy on Tuesday, should she spike a fever or her pain gets worse, than we will rush to Urgent Care and she will have an emergent biopsy.

~~~Worrisome Tuesday~~~
The vague picture that would happen on Tuesday is that she will have a knee biopsy sometime in the morning and the biopsy results will be out in an hour or so. If she indeed has a knee infection, than they will push her into Operating Theatre and have a surgery on her knee to clean up the infection on the day itself. What time, how long, or whatever else in terms of recovery and all, we have NO IDEA. I am just like this soldier on stand by, waiting to be activated anytime, with no clue. All I know is that it will be an admission for sure. So I have Iris and Stephanie on a stand-by with no back-up plans and no schedule... because I have nothing to work with! Everything will HOPEFULLY WORK OUT on the day itself. And the BEST PART is I have no telephone reception in the hospital! Hmm, communicating and co-ordinating everything with no phone reception, its going to be interesting huh! And with Jase attending school, life just gets more and more interesting. (I have to figure out how to shutter bet hospital and school when I have each kid at each location and I am only one person. But yeah, I will figure it out... no point thinking right now right?

To simplify everything, PLEASE PRAY THAT CHARMAINE HAS NO INFECTION IN HER KNEE and that we can start treatment for her cancer asap! Dear God, if you hear me, PLEASE PLEASE PLEASE LET THE BIOPSY PROCEED SMOOTHLY AND SAFELY and THAT THERE IS NO INFECTION AT ALL so Chamrmaine doesnt have to endure more pain and suffering than she already has. PLEASE, Charmaine really treasures her ability to walk, she is so happy the last 2 days, regaining back her independence and capability to dance happily. I really hate to see her in pain and unable to walk...

THANK YOU EVERYONE, I really appreciate if you could say a little extra prayer for us. THANK YOU.

~~~A mother who cannot decide whether to be excited or worried~~~
I have a really exciting Monday that I should be happy about but I also have a really stressful and worrisome Tuesday not far in sight... Just how much more extreme can things get... Focus, I keep telling myself. So for now, I am trying to focus on being excited and stressing about all the paperwork for school tmr. I will leave the fear, stress and anxiety of the biopsy till tmr, after school.

I think saying one day at a time is actually too much to ask for. I can only take it one step at a time.

Need to sleep early because I am a mom with school-going kids tonight! No cancer B.S. but just a normal paranoid mommy worrying about my own kiddos having separation anxiety tmr!

Goodnight to everyone in US and Good Morning to everyone in Singapore!
May everyone remain happy and healthy!

Love,
Cyn mommy

Getting better bit by bit...

Hi everyone,

I'm sorry that I have not updated since my last post...

Actually, dont know where did I stop previously, but she spiked a fever on Saturday night and we managed to persuade the doctor to allow us to go home and return daily for antibiotics so I can still look after Jase.

Anyway, Charmaine is doing MUCH MUCH better now. Her swelling has gone down significantly since our first dose of antibiotics. Although its still swollen and she still cant straighten her leg, her pain is now manageable with paracetamol and she can actually sit with more comfort on her stroller. So that has helped greatly in making me sane and calming my nerves. Being in pain just tears me apart...

So we are getting there, slowly but surely.

Charmaine is still a little upset with not being able to move and walk on her own, being reliant on me but at least she is able to take part in the activities in her stroller so that has definitely helped her mood.

I still have NO CLUE what is our treatment plan. And the orthopedic surgeon still hasnt seen her knee yet. Everyday, I have to ask and remind the doctors whether we have to come back the next day for antibiotics...

Thats about all I have for updates...

Please keep those prayers coming in, that all the other parts of her body is healthy and clean!!!

I am not thinking much, just living everyday routinely... hospital, meals, clean and wash...

Nonetheless, we are all doing okay!

Thanks for all your concern... they kept me going strong, thank you all.

May everyone be happy and healthy.

Love,
Cyn mommy

At Urgent Care with a darn fever now :-(

:-(

That darn fever spiked at 1930hrs! Argh!

I nearly just wanted to stop breathing myself at that moment!
I could feel my tears wanting to burst out literally, overcome with fears, anxiety and desperation. Really wanted to crumble but I couldn't. Charmaine herself was already close to tears because she knew what a fever meant. Inpatient.

Anyway, I kept breathing and I kept pushing my brain to think what I should do and prepare next.

We reached the hospital abt an hour later. It's now 2300hrs and we are still here. The amazing thing though is the kids' spirits.

Jase didn't complain abt us having to rush down to Emergency. And that seemed to have influenced Charmaine's mood as well. As soon as I regained my composure and assured her that we are not in Singapore and that we have a chance of not being admitted, she calmed herself down too.

Right now, as we are waiting for her blood test results to come back, Jase is happily playing the Nintendo while Charmaine is looking on. That's THE REASON I'm breathing slightly normally, while still anxious.

Charmaine had a really long day today.
She woke up in severe pain this morning at abt 6am, crying terribly and complaining that she couldn't move her right leg... Such a dreadful and awfully familiar scene to me but still, I panicked and I froze. Checked her knee and darnit, it was doubled yesterday swelling!

Jumped off bed and gave her coedeine and her antibiotics (which doesn't even seem to work at all!!!). Checked her temp and it was 37.9! My heart sank. It is a temperature that brings out the most fear in any oncology mommy. I quickly sponged her, told her to drink lots of water and prayed fervently that the darn temp would go off!!!

The rest of the day she was just tired. She couldn't move her leg due to the excruciating pain and could only lay on the bed. It was so bad she couldn't even sit up. A few times, she wanted me to carry her to the window to just look at the BBQ party out at the terrace but the pain was too much to bear, she reluctantly said she couldn't do it. It is days like these that makes me appreciate my legs and the ability to simply walk. Whenever Charmaine can't move or walk, it just makes her extremely depressed. Today, she seemed to just totally resigned to the fact that she should be in complete bed rest and didn't cry over being bored or wishing that she could join Jase at the playroom. Instead she just cooperated and rest quietly on bed.

I'm desperately praying that she is not neutropenic and that we can be allowed to go back to the house. And of course PLEASE let her body be good with NO infections!!!

It's gonna be a long night... Hopefully we can leave the hospital by 2am!

Love,
cyn mommy

Knee Pain...

Have you voted today?

http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

After spending almost an entire day at the hospital today and finally completing all my chores, I decided to use whatever energy I have left in me to remind you to vote.

How do I begin today's post? I suppose I have alot to update but yet nothing is meaningful in the whole lot I have to write about.

My facebook status pretty much summaries up my rather drained and long friday~

the getting worse knee pain, a more than 3hrs MRI today, a swollen knee, a CT bombshell - saw some tissues on liver, an emergency MRI of liver ordered on Monday and still no plans... thats how our friday went. Please help us make it better by voting. http://www.refresheverything.com/armswideopenchildhoodcancerfoundation
With cancer still in Charmaine's body, after 13 cycles of chemo and more to come, we need better and less toxic therapies. With time and funding being our biggest obstacles, your vote today means a chance of living longer for kids like Charmaine... thank you everyone.

From last week till this week, its 2 weeks, 10 working days of scans which revealed the need for more scans and more scans... and we are not even done yet...

Apparently this week's CT scan of her abdoman revealed some soft tissues on her liver. Well, no one called me. I wasnt informed. And today, it was only made known to me after I saw Dr Kushner and ran after him, telling him that Charmaine's knee pain seems to be getting worse again...

He asked if I was aware that they saw something on her liver and they have ordered an emergency MRI of her liver on Monday. NO. I DIDNT KNOW.

Am I still alive? Ya, I think I am. As a matter of fact, I didnt even cry. Maybe I'm just too tired. I've been up since 5am this morning. I think I'm void of emotions almost entirely. I didnt think that I even reacted to the news at all. I thought I felt my heart sank but I wasnt sure either. I just functioned on th basis of completing one chore after another. I brought Jase and Charmaine home at about 2pm and than I realised that they forgot to de-access or pull up the needle in her port. I decided to feed the kids lunch before I bring her back to the hospital again.

Everyone is just plain exhuasted from being at the hospital since 7am...

It is only now that I could feel the tears flow down my cheeks. I think I am actually glad that now I can be certain I am still alive and I am still human.

Nothing is actually registering in my head now. I dont know what to think. I dont know what to expect. The doctors are not saying anything until more scans and more reports are finalized.

Everything is so wrong. Everything that I had mentally visualised and all the various scenarios that I had prepared myself for had been nothing but just wrong.

Only ONE THING I had gotten right. This time around, things will be different, harder, tougher and more challenging. Yet, I wasnt expecting it to be SO DIFFERENT, SO TOUGH, and SO MUCH HARDER.

Just when will things start to look brighter and clearer again?

Please just let everything be a scare, be a nightmare and let the grey skies become clear finally.

We need a clear picture and we need a PLAN soon.

Please pray for Charmaine's knee plan to subside miraculously again and please also pray that the knee can finally heal so that she doesnt have to suffer this pain which immobilises her.

Please also pray that her MRI of the liver is clear and that we only need to focus of getting rid of the disease in her right thing and NOWHERE else.

Of course, most importantly, please pray that there is ABSOLUTELY NO NEW DISEASE ANYWEHRE in her body! And that her MRI of her legs and head today is all good!!!

Please also pray that we will have plan by next week and that we can start her chemo soon.

May everyone have a good long weekend in Singapore...

THANK YOU SO MUCH.

Love,
Cyn mommy

YOU CAN VOTE FROM SINGAPORE!

Dear ALL, I was told that everyone can vote.
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

Its very simple and you can help save many kids like Charmaine.
Just click on the box that says "VOTE FOR THIS IDEA" and than choose to "LOG IN WITH FACEBOOK" and allow access to your account and you are DONE.

You can vote once daily. We are now at the #10 spot, we need more more more votes to reach #1. The $250k won will be used entirely for research on Neuroblastoma. We are a few steps away from new treatments and lack of funding is our obstacle.

So please help us. Please VOTE to help us extend the life of our kids suffering from Neuroblastoma.

THANK YOU SO MUCH.

Love,
Cyn

PLEASE VOTE to help us save our children's lives.

http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

I hate to watch Nick suffer so.........

At 10 last night a CT was ordered. Nick's pain was presenting like appendicitis, constant, gut wrenching with no relief for 14 hours. Dilaudid not managing it well. Nerves kicked in as they said with and without iv contrast. Very quickly after the scan they came to the room and asked...he doesn't have is appendix does he? Duhhh.. Well, we see something where his appendix would be..."inflammatory changes".... Pass the puke bucket please! I immediatley thought... new tumor, we are done, this is it. She left the room and as I tried to not have my teeth chatter and legs shake the next 20 minutes felt like eternity. Then she came back in and said the attending radiologist diagnosed him with a condition called Typhlitis. Hmmm... that doesn't sound like tumor... breathe.....

It is an acute inflammation of the area around the appendix at the very bottom of the intestines that occurs in post chemo neutropenic patients. Treated with aggressive antibiotics quickly there is a good outcome. So Jim and I left feeling ok........ got back to the RMhouse after midnight. Immediately went online to google Typhlitis. First words I see "often fatal" "high morbidity rate" "dead bowel"... Ok... teeth chattering resumed.

Got up here this morning and asked about all of that horrific wording I read. They ASSURED me that at THIS hopital they see it a lot in neutropenic, heavily treated patients (that would be Nick) and they have very good outcomes. The path to get there is hell though. The pain will not go away until the inflammation does. Guess what will help that? a Friggin WHITE blood cell count... which ours is on the way DOWN, not up... We are on day 8 chemo. The anti-fungal and antibiotics will help too, but white cellls are magic and we are no where near getting those right now. Please, please pray for Nick to ride this storm... it is not an easy one. He has to have a pain pump at a very high rate to just manage the pain. He can't have anything by mouth for two days... Even water was coming right back up.

Stem cells infused tomorrow, that will help (in 10-14 days). GCSF shots onboard..that will help (10 days or so). antibiotics on board... pain pump on board.... now for this condition to not get any worse... which it could, and that wouldn't be good.

This is such a perfect example of toxic treatments having bad side effects. This can't go on for Nick much longer. We need these antibody trials OPEN!!!! So I beg everyone again... text your vote daily..... tell your coworkers, fraternities, sororities, churches, civic groups.. They want to have a project of hope to focus on this month for Childhood cancer awareness month?? then set a daily email and text reminder and help us out, please!!!

www.refresheverything.com/armswideopenchildhoodcancerfoundation.

TEXT: Text is : TEXT PEPSI (73774) and then Text 102653.

The above journal entry is an update from a fellow Neuroblastoma mommy from NYC.
http://www.caringbridge.org/visit/francafamily

For a long time, I've been following their journey, marked with numerous miracles, inspired by their never-give-up attitude, cried and cheered alongside with them silently.

Nick Franca's mom is an amazing mother who is now inpatient at MSKCC with Nick and yet, has never stopped thinking of ways and methods to fight Neuroblastoma.

I truly am humbled by her efforts.

Charlene has tried voting from Singapore but apparently, it doesnt work. I know its a long shot but if you happen to be in America, and is reading this update now, please help us to spread the message to all your friends, families and whoever may be able to vote! Help us, this sum of money may literally save the lives of many kids whom need more treatment available to them desperately.

And if you happen to be a Singaporean with friends, schoolmates studying in America, please help us to inform them of this campaign. Anything, every vote counts. We are not talking about making anyone richer but literally saving lives of kids whom are fighting a very hard battle of their lives.

Many many decades ago, Leukemia is a horrible cancer with a very low chance of survival. But research and funding has remarkedly changed that. WE NEED tons and tons of fundings to research for better and more effective methods of treating neuroblastoma. Your vote today not only will save the many children currently fighting neuroblastoma but the many many thousands that will be diagnosed with Neuroblastoma in the many many years and decades from now... Hopefully, one day a cure for cancer will be found and no one will ever have to go through all these sufferings, no matter a child or an adult.

THANK YOU FROM THE BOTTOM OF OUR HEARTS.


Updates about Charmaine

Last week, Charmaine completed her MIBG scan on Wednesday. Dr Kushner had an appt scheduled with me right after her scan. We met but we couldnt discuss anything about her treatment plans; this is because her MIBG scan looked questionable.

MIBG scan is the most important scan that we do for kids with Neuroblastoma. Although it is not the only scan we use to diagnose our kids, the most weightage is placed on the MIBG scan, amongst the others such as MRI, CT and Bone scan.

If you recall, our last MIBG scan in Singapore was taken in July @ SGH.
HER REPORT WAS NEGATIVE and CLEAN.

I saw the scans myself and was beyond relieved to see the scans as totally clear. It meant so much especially after the MRI scare that I had.

Anyway, I emailed Dr Kushner on Thursday, requesting him to email me back with the MIBG results once he gets them so I can actually function. Being the sweet doctor, I got a call soon after from his secretary, Stephanie.

Here are her words...
"MUCH IMPROVED"

We went from "CLEAR to MUCH IMPROVED".

I didnt cry.
I didnt scream.
I didnt stop functioning.

I inferred the results as being NOT CLEAN, with some disease.
Most certainly NOT WHAT I was hoping to hear.

Although I had always prepared myself that the isotope (contrast/dye) they use in Singapore is inferior in quality compared to the one they use in MSKCC, to actually hear the words "MUCH IMPROVED" still threw me off guard. And the sadness is still overwhelming.

While we didnt discuss any plans last thursday with Dr Kushner, he did mention casually that looking at the scans, he thought it is most likely that they will propose 2 more rounds of chemos. However, it is pending the final report of MIBG.

While I know that I should count my blessings that "MUCH IMPROVED" is still WAY BETTER than the alternative, I just couldnt bear the thought of putting Charmaine through more chemo. I will do whatever necessary to fight but its just painful and scary to deal with chemo here alone in NYC. Nonetheless, I have to do what I have to do. I just keep repeating that sentence over and over in my head.

This week is Labor Day holiday on Monday and as part of Charmaine's work up, she will need to have a MRI of her head, CT of her abdoman and MRI of her legs from Wednesday to Friday.

Depending on Charmaine's bone marrow biopsies results, we should most probably have a plan by end of this week. PLEASE PRAY THAT HER BONE MARROW IS CLEAR.

However, I am already mentally preparing myself for Charmaine to start chemo anytime soon.

Aside from the unexpected result from MIBG, we are doing good. Made some new friends in the house as alot of our old neighbours have returned home either after completion of treatment or they had become angels not needing treatment anymore.

Jase and Charmaine seems to be enjoying time and life in NY. Especially Jase, who has matured and grew more independent. He would go down to the playroom himself and play the entire afternoon with new friends and volunteers. In fact, he has grown less picky with food and is eating almost everything I cooked or bought.

On the other hand, Charmaine is still recovering from all the fasting that she had to do for all the procedures with General Anesthesia last week. She is not eating as much and is rather fussy with her choices as well. And I think she is home sick, missing her traditional chocolate rice bread from the Singapore confectionary! I almost feel inclined to ask Charlene to help me go beg for the recipe from our favourite confectionary shop!

We have almost recovered fully from our jet lag and is finally sleeping at normal american hours but we still wake up faithfully every morning at 6am! Haha, guess its not such a bad thing because the early riser gets to get the most! :-)

Stephanie, one of our best friends in NYC drove us up to Korean Town in Flushing and I was just thrilled to see almost all the familiar sauces and food stuff that's available! I think she was amused, seeing how wide my smiles and eyes were! We joked that now we can finally migrate to NYC! Haha. THANK YOU STEHP! LOVE YOU!

I’m loving the nights where we get to sleep on our bed together as a family and wake up every morning as a family. I think I can do this everyday and will never be bored of it! I truly cherish such moments. It is probably hard to imagine how much happiness such a simple routine can actually bring me but it is just so true. Its been so long, back in Singapore, everything is always in a rush. Things somewhat slow themselves a little whenever we are at NYC. Not sure if its because both Jase and Charmaine gets to spend every moment together, with nothing else to bother them. Their holiday mood is so infectious it gets to me too!

While chemo is looming ahead of us, I choose to escape that thought and just focus on my happines for now, one on my left, one on my right, and talking, giggling and laughing non stop...
If only life is just this simple...

Before I end this, I would like to just do the mommy thing and NAG again. Or rather, I am pleading for your help.
PLEASE VOTE!!! SAVE OUR KIDS.
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation

Thinking of everyone back home and wishing that you could feel and share in our happiness...

Love,
Cyn mommy