Saturday, August 29, 2009
Charmaine will be having her HAMA test on 3rd September and next round of 3F8 to be somewhere around 14th September.
Beside complain of leg pain, our Charmaine has been very cheeky.
Wednesday, August 26, 2009
Sunday, August 23, 2009
She is back from hospital at 2-ish am, however, will need to head to hospital again for her antibiotics shot.
Top left: Mommy Cyn and Charmaine
Top right: Charmaine and her Magic Wand.
Bottom Left: Her new pram and baby.
She will be starting her radio on Tuesday to 3september before the next 3F8 round will start in mid September.
Saturday, August 22, 2009
finally has the peace to write. we have completed cycle 1, 5 days of gruelling treatment. the toughest in evrey way. thankfully, help came in. Iris came on mon to be with Jase at playroom. Tue evening, Jasmine and Viviene flew in from Phoenix. On tue, help came in the form of Jase. On Mon and Tue, when I was alone, help came in the form of Jase. to those, including myself who think that kids cant help you much in times like this, i would like to say that kids are more than what we think they are.
On Mon, char was in extreme pain until 4am. i had to rush out to get cold packs and it was Jase who watched over his little sister for that 20mins. He called to tell me she fell asleep. for char, it was the toughest day. She was drowsy but yet it was too painful to sleep. Even 30mins, she would cry out in pain. When she finally slept at 4am, i had to wake her up at 7am. I was tired, so were the kids. Worst of all, Char rems everything that has happened on monday clearly. Although she remember it and fear was written on her face, she didnt put up any fight when i said we had to go for 3f8. Asked formilk and chose her dress, and we left.
Gettering her to take herpre-med was tough on tues. She had another reaction on tue, breaking out in hives all over, and vomitted at least 5 times. i cried out in fear, looking at her hivey face and body. Luckily she responded to the bendaryl given immediately. She didnt eat anything at all for 3 days. Wed was slightly better than tuesday. JStill in pain, still nausea. Thursday was the surprise. Our feisty little girl returned her feisty self when she woke up! we tried to encourage her on wed with all the pain that we go toys r us when she;s better, and she can get a toy. She couldnt even answer me on wed. sshowed no interest even at the mention of toys. When I opened my eyes on thurs morning, first sound I heard was "mommy, i tought u said, we were gonna get toys?" i was shocked in a pleasant way. =) to see her eyes glow, and her cheeky look asking for toys. Imiss that so badly. It was also the first time Jasmine and Viviene hve heard my real girl in her true self. And not the grumpy distressed unhappy baby over the previous days. They laughed and they smiled. I did too.
Welcome back my feisty princess!
She was clearly upset at having to go hospital but did little to resist. In fact, she went on to continue to surprise us further throughout the day. She learned to cope with her pain ! One of the things we notice about little girls here is the strength to suffer in silence. Even when I mentioned Char crying out in pain, its never thouse loudness bursting through the hallway. but boys tend to do that. Girls turn stoic. So did my little princess.
The nurse first saw her signs of distress through her heart rate. I hadnt Know! we were on bed watching Dora. she had been tolerating thepain in silence with no complains. What can I say? Only after another 15mins did she let out a whim saying her tummy is very painful. Asked if she wanted med, she said no. After another 20mins, she was still in pain. We dedcided to give her Dilaudid. Her hives broke out bad. She was given so much med that the nurses were surprised that she's still awake. I'm surprised again! She was fighting the pain, fighting the zzz monster. She just want to stay awake and go home. And we did. Upon home, she was up and running by 6pm. A veryvery wonderful sight. I;m just so glad to have her back the way she is.
Today, she was upset cause she thought yesterday was her last day. but she soon appease her anger and fear. For some weird reason. Today's pain was much more than yesterday, altho they expect the pain to get betterb y friday. Hives again. Gave her more rescue than yesterday. Right now, she's in pain. But she said this to me when i asked if she wanted more med. "I dont want med. i want to wait for baby monster to go away then I wont be painpain. " It brought tears to my eyes. I know she's a fighter but i just didnt realise how tough she is until now. because of the pain relief medication, shewould be in this drowsy mode. But since yesterday, every now and then, she would say out a short phrase and u know her mind is awake all the time, listening and thinking. She just couldnt keep her eye lids open wide. we had some near death experience for a boy across the room receiving 3f8 and it totally freaks u out. He pulled through but was removed from the protocl. U hear kids screaming in the morning when they start 3F8. Not a place u want to know or rem actually. We have another warrior on the same protocol as Princess Char and we started on the same day in the same room, side by side. And we will be pretty much on this journey together.
--edited to add--
cyn SmS at 0952pm Friday (NY) or 0952am Sat (SG)
Damn. She was just screaming out and crying out in so excruciating pain! 10mins ago. Fraek me out cause iam alone. =( Luckily the pain med helped. Other than first day, this is probably the next worst!
(Cyn has rushed Charmaine to hospital since then)
Friday, August 21, 2009
Over the past few days, she has been vomitting and only been able to sleep in the wee hours of 4am, only to wake up early the next day for another shot.
The conversation starts with the standard opening line of the kids:
Charlenejiejie, where are you?
- Working in Singapore
Charlenejiejie, is it night time there or morning?
- Morning here, and NY night time right?
Then, Charmaine started to inform me about her 3F8 saying.. I did my 3F8 finish already. Very painpain.... Got win Monster?
Of course my dear. U have been such a strong girl and with so many bullets fighting rounds, Monster surely wont be back to you soon.
I miss all of them.
Thanks for Cyn Mommy's friend for coming by for a week + as well as Iris for being with Jase in the crucial days.
Yes love, Charlenejiejie will be back to sleep in that.....sofa bed you all specify. =D
I'm hoping to meet elizabeth and her folks on every cycle because that means that our girls have not hama and is on schedule! I'm just so glad that its over. Its friday. All of us can finally have a breather and have a decent sleep. Next on, radiation. I wont think abt it until mon. Just wanted to say thank you for all the prayers that got us through cycle 1 safely. Thank you all. I am forever grateful. Thank you.
[SGT 00:55 22-08-2009]
Tuesday, August 18, 2009
Tough day for char. She went in happily but has been in pain since the infusion. exactly 10mins after they strted she was in excruciating pain. Was asleep when they started but cried out in pain. After 15mins of crying and cramping she finally dozed off with the increased sedation, head covered in cold swear. 30mins infusion, 15mins flushing slept for an hr, discharged. But in pain since reaching room. Drowsy from the med but wakes up in pain every 30mins. Just vomited too. At one point in so much pain, she doesnt know where. She got upset with the pain and cried she doesnt want baby monster inside stomach. I hope she can at least get a decent sleep tonight cause we need to be in at 8am tmr. Barely 18hrs from today 1348hrs first 3f8 infusion.
Saturday, August 15, 2009
We came back from the hospital at about 2pm today with 5 new tattoos on Charmaine's body.
I was actually taken aback when I heard from the Radiation Oncologist yesterday about getting 5 permanent tattoos during the simulation session (which took place today). She explained that the tattoos are required for the technologist to line up the radiation beams for the upcoming 14 sessions of radiation that Charmaine has to go through.
We survived Day 1 yesterday without the kiddos' favourite Charlene jie jie.
Everyone woke up past 7am and managed to reach the hospital on time for our 10am appointment. Jase and Char were exceptionally sweet and I stocked our bag with food, knowing that they would be screaming out in hunger upon reaching MSKCC. Sure enough, just as we walked through the entrance and Charmaine already started screaming. Fed them their sausage and crabstick and everyone is happy! Brought the babies to the playground, to reward them after the consultation. Lunch and we were done for the day. That was the brief summary for yesterday.
Today is another early day at the hospital. She was scheduled for a checkup with the NB team at 0930hrs and for Radiation simulation at 1130hrs. I was a little worried about today because Charmaine has to be sedated for the simulation and hence she is not allowed to eat since midnight and she is really one feisty lion cub when she gets hungry. Sure enough, she was very upset this morning about being restricted with no food and drink. It is always not easy to calm her especially when she is hungry and hence I get rather stressed up every time she has to get a sedation and fast. [A rather amusing thing though about the hunger is that it pushes Charmaine to be even more co-operative than ever! I told her that we have 3 procedures to be done today and than we will go for lunch! So you can pretty much imagine her reaction when she gets a little fearful and I would mention "Quick, food after we are done!" and she would oblige swiftly whatever she is asked to do almost instantenously! I couldnt contain my smile seeing how adorable her reaction is.]
The thing about seeking treatment in MSKCC is that I always have to try to pre-empt what they need to do for the day. [I decided to put emla on Charmaine's port-a-cath today before going to MSKCC. Thank goodness I did! They said they needed to do blood tests and hence had to access the port! Not sure if its just me or rather MSKCC simply doesnt have a habit of informing or rather keeping within certain daily habits. Things are always so non-standardised and non routine] Another NB mommy in Singapore referred to it as having to start all over again. Strangely, while its indeed true that I am starting all over again in a new hospital, I have never really felt 'seasoned' anywhere. Not even in NUH or KKH. I assume I never will. Because life with a sickness thats here to stay is never a 'play that follows the script'. No doctors can tell me what the future holds for my little princess. And its so strangely true that the doctor here cant even tell me clearly how long the treatment will take.
The only thing we know for sure now is that Charmaine will be getting her first 3F8 infusion this coming Monday, 17th August. I am willing yet dreading for the day to come. I am going to face this day alone. Well, not entirely alone. I have Jase with me. As it is the first infusion, no one knows how she will react to it. But we all know that Monday will definitely be a long day for my babies and myself. As Charlene had mentioned earlier, I spoke to a couple of parents who offered words of advice: "Dont look at her straight in the eyes when it starts". "Its one of those few things that tear you apart totally but its worth it!" "Just focus on the road ahead". I am filling my head with almost all the most horrific thoughts , hoping that they will mentally prepare myself but I know I am most probably gonna be a nervous wreck on Monday. I have no idea how I am going to manage between taking care of Charmaine and watching over Jase but Monday will be here in a blink and given no options at all, I know I can only prepare as best as I can. [I dont know since when it started, but I must say that sometimes, no options is not a bad thing after all. When one has no options ahead of oneself, one can only walk through the only path ahead, willing or not, fearful or not. At least for me, this is pretty much my life in the last 6 months. No options and hence only just action to move forth.]
The next 3 weeks of our lives will probably be the toughest ever. And it looks like I am going to have to manage those 3 weeks on my own with my little ones.
A little technical bit for friends who wanna have a better idea of the treatment in the next 3 weeks.
17 Aug to 21 Aug - 3F8 infusion daily
24 Aug to 28 Aug - Twice daily Radiation
31 Aug to 1 Sep - Twice daily Radiation
Pain will be the most worrying for 3F8 treatment.
Hunger will be the most stressful for the 14 sessions of Radiation. [Because Charmaine has to be sedated for the Radiation and its twice daily, it means that she would not be able to eat everyday until almost evening for those 7 days. Even the Radiologist said that hunger will be tougher than the radiation itself. And its even tougher because I need to somehow feed Jase and yet not feed Charmaine. Frankly, I have NO IDEA how I am going to do it but I will sit on it for now because I have to face 3F8 first.
For now, I just have a little request, if its not too much to ask for.
Please continue to pray for our feisty princess Charmaine, especially so on Monday.
I will need all the luck and all the godly power available to survive Monday.
With this, I like to wish you and everyone in your family good health and happiness.
No matter what battle we all have to fight on Monday, we shall have a good time with our love ones before the fight begins...
Have a good weekend.
Friday, August 14, 2009
After hugging my three lovlies, I am in JFK now waiting for the flight back. Today had been a long day for all of us. We arrived in MSKCC @ 10am thinking that all we need is to sign the consent form for 3F8. However, we only managed to meet up with Dr Kushner at 12pm, after our lunch in cafeteria.
After about an hour of discussion with Dr., Mommy Cynthia came out ifnorming us that we have to take charmaine in for injection to kickstart the 3F8 immediately. We were not prepared, and definitely not Charmaine. Feisty she is, she knew that it is to make sure Monster is forever out of her, she allowed herself to be carried by Mommy. A little while later, we were sent to the Pharmacy to collect the five viles of injections as well as a few other medications. These 5 viles is to prep her body for white blood cells generation (i think) or something to increase her white blood cell count. It has to be injected daily ... by... Cynthia herself! Princess Charmaine now has a tube-like plastic around 1 inch long on her left arm so that Cynthia can access to it easily. It has to be refrigerated and kiasu us decided to tape every vile our name on. Small it is at 1ml, it comes at a hefty price! From the photos, you can see the cost of it.
Charmaine told JaseJase that she had to take injection daily, and looked real upset about it. An injection a day, a step away the Monster it will be, I told her. Then, the amusing part is, the kids started to decide on the number of steps to the black dustbin that it should be. Too little, too near. Too many, too much for Charmaine to take.
We were also given a form to sign and Dr has briefed Cynthia on what the study would be. Nothing that had surprised her given that Mommy had spent alot of time reading up, weighing the options before making the decision for 3F8, and then, the fund raising. In RMH, Mommy Cynthia also took time to chat with fellow parents to understand the pain involved.
Initially, we were recommended of a 4 rounds, where 3 weeks of resting is needed, which means, around 4 mths (if there is no infection). Dr. has now revised to 8 or as long as she has not developed HAMA (resistance to the mice injections) There might be an extension of the duration, or Dr might keep the resting period shorter so that she can finish her course asap. However, based on the image below, you can also see that the resting period after 4 rounds would be 8 weeks, which means that we could also do a fly-in and out every 2-3mths. This is still an open-ended one for us because everything is still as tentative as it can get. Our princess health status, reaction to drug etc are needed to be monitored closely.
After the 6-8course, we are required then, to do a follow-up for at least 2 years, before we can conclude this 3F8 study. It seemed a long fight as the 6-8course would be approximately 24mths, and another 2 years of follow up but whatever it is, the first 4 would be the most important ones.
Pain, is the most common thing the kids will feel.
Neuroblastoma, as the Monster is named, involves injecting 3F8 into the body over a period of less than 90mins, typically 15-30mins. However, the excruiating pain is felt the entire day, if not longer, for older children or young adults. Morphine is given (luckily our princess is not allergic to it) and even so, they will still feel that pain and vein popping (as we heard). Cool Oxygen will also be blown to the face to make them feel better. While we have been warned and it never would be painer than to know that your most valued one is in pain, it is all worth it, a parent said. 4-8 rounds of 3F8, with the possibility of extending his/her life. You will fight for it.
Recently, there is also a talk by a survival where he was diagnosed with Neuroblastoma and now, 30 years old, alive and living. Hopes are aplenty. Which reminds me of a Turkish family conversation this morning. What do we live for? Looking at the kids in the playroom, where they all seemed to suffered. Fight. Fight for a day to live.
I leave with a heavy heart, because, I will not be there, when our princess win her fight, when our princess has dumped the Monster into the black rubbish bin - the smelliest and stinkiest, as they call it.
(And I wish, I have taken a video of her doing this gambatte action... )
Love, Charlene (back in SG)
Wednesday, August 12, 2009
For the kids, RMH is a big playground for them. Even laundry days! These little helpers of mommy cyn love to head to the laundry room with the pink laundry bag. They figured out it is too heavy to carry by one person, they decided to do it this way:
In the small room, emptying the bag:
Just a few trips to MSKCC where they had chemo outpatients, they picked up how the kids are taped with tubes at their back and decided to decorate mine with it too!
Jase is such a darling to Charmaine. Whenever we had to head out in the sun, he made sure that Charmaine's head is covered by the stroller, or she wears a cap. Once when she was slping on the stroller with the Sun shining, though we have covered the stroller, she still gets shined. Jase then used her pillow and held on to it to block and shade sleeping charmaine.
Then, there were a couple of times we had to carry the food from the kitchen, and little helpers are needed. He will make sure that he carried the heavier ones while Charmaine either do not carry or carried the lighter ones.
Wonder if it is the food or the air here. They are growing so fast and both had put on weight too!
I am leaving New York tonight and guess what is the part i miss about them most? when they woke up. They look so cute and always seeking for each other. If the brother woke up first, Charmaine will search for her bro and hug him before snuggling back to bed again.
Jase in return, will hug her back and they will just cuddle into a ball.
Bless you, dearies and we shall see one another soon!!!
Sent in by a reader, nicknamed ArtistDing from HWZ forum.
Thank you for the cute video!
Recently, there have been quite a number of feedback from SG saying they can't view the blog. What they see would only be some outlines of videos with no text and photos. I'm also experiencing the same problem on my laptop up till now but everything's fine on my hubby's desktop.
If you are able to view the blog and see this, please let anybody you know who are not able to view that it could be coz they are using the old IE browser. Switch to Modzilla firefox or the new IE to solve the problem. So now whenever I wanna view this blog, I would just switch to firefox browser. It works well. Thanx to the suggestion of one of our readers.
I do not know how else to solve this problem in the long term except totally switching browser.
I've also included this temporary solution in the Facebook group wall to reach out to those who are not able to view the blog to see this. Please help to spread the word around.
Tuesday, August 11, 2009
Just minutes ago, we received the phone call by MSKCC that Charmaine has been cleared of cancer cells in her latest bone marrow tests and detailed scans by MSKCC with the sophisticated machinery that is not available in singapore.
All thanks to everyone's blessings that our princess has won each and every phase of her war:
Phase 1 - Chemotherapy in NUH
Phase 2 - Operation in KKH
Phase 3 - Preparation and funding of NY treatment
Next phase, 3F8 treatment will be the, hopefully, last round for our princess to win the monster!!!
Thank you all!!
Monday, August 10, 2009
There has hardly been a 15-min break for either of us as the kids are forever energetic.
Thanks to Auntie Iris for popping by again to for the water kettle so that the kids can have their hot water dispenser easily.
Friday, August 7, 2009
Forgotten about the bitter medicine that she struggled with, she walked in cheerfully to MSKCC and everyone was commenting about how cute she was. A typical Asian in an American setting, when asked what was her name, how old she is, she was either not replying or whispering. Cyn Mommy taught her what she needs to do, and boy, did she impress us when she was asked again in the elevator!
"Mommy, see! I say very loud. Jase Jase also!"
The power of mother-child bond.
From the previous post, you would have seen the play room in MSKCC. After the injection, with Jase around, both of them were playing in the room for about 2hrs, before we head back home.
Taught with a lesson of responsibility, and they ace it, their reward was to be able to play with the mobile phones. Look @ the glee on their face. We are so glad we took up unlimited talktime with TMobile as they were talking to each other through the phone.
It was fasting night again for Charmaine and the last one because she will be taking out the needle from her "circle bone" on Day 5.
She is now in Day5, MSKCC, while Jase is watching the GI Joe cartoon series bought by Barby. Now he is hooked on it. =)
A weekend of MSKCC-less soon!
Whee~ and thanks to all!
Oh ya, any1 has any lobang over apartments in NY around E70s with 1 bedroom and a kitchenette?
Thursday, August 6, 2009
Crying Charmaine. Mommy Cynthia has to coax her down before she finally takes it.
Minutes after, our feisty girl seemed to forget about the medication and starts to play with her oxygen mask.
While waiting in MSKCC, Jase waited for her at home. Using the same oxygen mask, he had created himself a bow and arrow.
A kind singaporean dropped in to get us the snacks for Charmaine as well as porridge&duck for the kids lunch. Yum.. finally something for them that looks more @ home.
To reward our little princess, we packed them for a trip to FA O as well! Both kids came back with radio-controlled cars and of course, our princess had herself a pink car.
Can you spot them?
This afternoon, they felt like they are on a long holiday trip as the chemo will only start next week. Looking at the three of them, hope that Mommy Cynthia did enjoy herself as much as the kids too =D
Instead of cabbing 20streets back, we decided to make use of the strollers and walked back home after getting the toys.On the way back, Jase has KO-ed while Charmaine occasionally request to walk with her mommy. Pavements here is huge and i guess, tempting for her to run around. Our naughty princess saw pigeons nibbling on the food along the pavement and decided to run and scare them, with her hands in her mom's.
Dancing in store:
Our final stop is T-mobile, to get two pre-paid cards (and phones) for Jase and Charmaine. Next week would be the separation week for them and they have this great plan of unlimited calls between T-mobilers. With the chatty kids, this option will definitely be the best.
Jase woke up while we are waiting in line and it seemed that he landed in winter
As we all did not nap during the afternoon, by the time we reached back hotel at 7-ish, we were all kinda slp walkers and finally KO-ed @ 10pm.
Visits by guests and courtesy calls by concerned donors also touched our heart. Thanks to Iris for her snacks, Barby and team from SIA for the toys and colouring books/stickers (and Krispy Kremes for us!). We have also phone calls who assured us that, if there is anything, anything that we need, they are a phone call away. =) Thanks Andrew and another i couldnt catch the name in my sleepiness.
It is Day 4 soon and no fasting today!
Kids are munching nuttela bread right now.
Videos will be up shortly.
Good morning sunshine!
Wednesday, August 5, 2009
I should write...
But its the first time ever I am so brain dead, probably due to the jet lag. Or maybe just having too much on my head, or maybe I am coping in my own realm of reality (denial?). Please pardon me but this entry is not going to be a coherent one.
Let me just touch on briefly what had transpired over the 2 weeks before our departure from Singapore. I was enthralled in a lawsuit with my ex-husband defending myself up against a top notch lawyer from a very famous law firm. I really dislike attending court because it never ever fails to drain the energy off me totally. This time, it was even more tormenting, having to shuttle between hospitals and the court. That was the first time I left charmaine in the hospital without her mommy and I couldnt feel more guilty - I couldnt even concentrate in the courtroom, as all my mind was on Charmaine who was waiting for me in NUH. [I know his lawyers are diligently reading up on Charmaine's blog and I wouldnt be surprised if I get some lawyer's letter from him seeing this blog entry.] I am so sorry that I cant share more of this and its precisely because of this very reason why I dare not blog much, not knowing any aspects of law and what am I not allowed to step on... [Even as I am typing now, I am full of apprehension... and its very tiring]
"Take each day as it comes" is pretty much how I am living my days...
No anticipation, no dreams, no zest. I just concentrate on what needs to be done the next few hours, the next day... I always quietly promise myself that the next entry I write has be a positive one, and one that doesnt make any of you reading it tear because I hate to be the reason for upsetting one's day. But I always fail.
Upon the closure of the case, I had to focus on packing. 2 days were all I had. Charlene, Godma Jolene, Uncle Kehang, Wei Kang kor kor, Angela, Emily, Josephine and Fanny all dropped by to help whenever they could. Thank you for being godsend. And I have to mention Lynn and Kevin who sponsored the DHL courier charges and helped to arrange for the shipment to be sent. And also thank you to SIA for being so understanding in accommodating our request to postpone the flight last minute due to Charmaine's fever. I seem to have forgotten to say a word of thanks to all the kind souls who made Dora party possible for Charmaine. It was the first time my feisty princess Charmaine was out in a public setting and the looks of her face said it all when it comes to how much she enjoyed that brief moment of being out there. THANK YOU ALL.
Last week when Charmaine was suddenly admitted for fever infection, I couldnt have been more stressed than ever. Amidst the court case, amidst the packing, amidst arranging the flights and the accommodation... everything just added up to a humongous amount of things to be dealt with...
Having said all that, we finally arrived in New York a day later than planned, but whatever it is, we are here. A few close friends told me to take it as an extended holiday with the kids and it may help me to cope easier. The mind is a powerful tool no doubt, but my physical body is incapable of commanding my mind, no matter how hard I try, having been battered so many times... I almost feel fearful to be happy, in fact, I do. I try to numb myself, not too much joy, not too much hope, not too much of happiness, in the hope that, if I dont have too much of happiness in my life, maybe whatever little happiness I have wont be cruelly snatched away from my life. I am sorry I digress...
The 2 days we spent over the weekend before the first consultation on Monday, were heavenly for the kids and myself. It almost felt like a holiday. In fact, it does. Although we are all trying to get over the jet lag, till today... We did simple things like walking down the streets, doing some grocery shopping and just playing in the park. Jase and Charmaine enjoyed themselves thoroughly, especially with their favourite Charlene jie jie. Charlene's presence definitely made settling in so much easier. She is a very efficient girl, so fast and swift in whatever she does and she takes on everything as if they were her obligations.
Good things do happen amidst all the trials in my life. First, Charlene is the best thing that has happened. The kids got themselves a best friend and I got myself an angel. Next, YOU are one of the biggest reasons. For making the miracle of raising that USD $350,000 a reality. Previously, I had prayed so hard to raise that sum wanting so badly to give Charmaine a 50% chance of survival... Now, that half a million gives a whole new meaning to me and my family. With Charmaine's bone marrow not cleared even after completing 5 cycles of chemotherapy for the standard treatment regiment in Singapore, Charmaine's chances of surviving even under the mere 10%-20% chances in Singapore is bleak. Put it simply, if we hadnt raised that sum, the treatment in Singapore would be "to give more chemotherapy until Charmaine's bone marrow is cleared or to give more chemotherapy until Charmaine's body can no longer take it anymore". Hence, the first and foremost goal ahead is to get Charmaine's bone marrow to clear. Without clearing, there is nothing to talk about... no hope... nothing...
According to discussion with Dr Kushner, with 3F8 in MSKCC, the chances of clearing the bone marrow is more than 85%. One of the misconception I had before about 3F8 was that 3F8 is only administered if the child is cleared of any disease in the body. I checked with Dr Kushner and he said MSKCC uses 3F8 to treat the disease in bone marrow especially when it is difficult to clear the bone marrow of the cancer cells even after beating the body with numerous high doses chemotherapy. The question of when to start 3F8 infusion will be discussed after we get results of all the numerous tests done this week.
Saturday and Sunday were the most 'noraml' days in my life since god knows when. I didnt discuss much about the reality of having scans and tests scheduled daily for the whole of this week with Charmaine because I wanted her to be able to just enjoy the 2 carefree days happily. To Charmaine, those 2 days were pure happiness even without her speaking explicitly in words. Because, even to mommy me, those 2 days were just plain simple and easy.
I actually didnt realise how relaxed I was until the harsh reality of Monday set in. Sitting in the clinic, waiting for Charmaine's name to be called, I was numbed with unknowns, trying to fight the jet lag, coming up with questions to ask the doctor, figuring out the environment and keeping Charmaine feel safe... Even though we are international patients at MSKCC, it is nothing like the international patients in Singapore (Although much of the patients here have traveled distances to come to MSKCC). Back in NUH, services for international patients were admirable. Not because they are paying more. But each patient had a point of contact from their fellow country (or rather speaks in similar language, I didnt speak to everyone but based my assumptions on my observations) who would visit them and always appear besides them when they visit the clinic in NUH to assist them. It was this same sort of assistance that I had hope to receive upon arrival in MSKCC. Sadly, none.
I had to figure out where to go. I had to figure out what to do. I had to figure out what is what. It is intimidating, especially being the only asian in the room packed with Caucasians. Since this week is fully packed with the numerous scans and tests, it means we will be going to various departments at various levels and I have to figure out everything down to the elevator location all by myself while trying to calm my little girl. I am most certainly not hoping to receive special treatment but surely a short orientation tour around the hospital would help greatly. Sadly, none. Indeed, I had chosen this path voluntarily and is not allowed to complain. I am choosing to say out my fears aloud, in the hope that it would give me some much needed courage to plough forward.
One of the most striking differences here in New York is most of the kids we have seen living in Ronald MacDonald House do not wear a mask. The same goes for people in MSKCC. Almost none except for a couple of them wears mask in the hospital. The next shock came when we went in to the clinic, waiting for our turn to do a finger prick - for blood test. I had explained to Charmaine saying its her favourite finger prick, told her to choose a finger and that there was nothing to worry about. To our dismay, when we went in, the RN said they had to collect alot of blood to many tests and hence had to access her port instead. Upon hearing that, Charmaine broke out in tears and cried very loudly, clinging more tightly than even onto me, refusing to move. I was shocked too. I really hate to have explained the situation wrongly to Charmaine because I really hate to have her trust on me betrayed. And what transpired next was just sheer nightmare. In Singapore, to access the port, the nurses would apply a cream called emla (anesthetizing cream) on the port before they poke the needle. Over here, they said we are going to spread some ice coolant on the area and we can access the poke. There I was, given little reaction time to think and I had to decide for Charmaine. Gesh, it sucks. The only words that came out from my mouth was "dont you use emla?" They answered yes but that means you would have to wait for another hour. Charmaine was already very tired from jet lag, so was Jase waiting outside for more than 2hours already. I asked if the ice coolant really numbs the area, they said yes and so I said yes. What happened next was everyone's imagination. Charmaine fought hard, crying out aloud "mommy, mommy, mommy!!!" and gripped me so tightly that we couldnt spray on her skin. I, her mother, had to be the very person to restraint her down and allow the nurses to do the procedure on her.
The most tormenting thing throughout this journey is having to be the very devil to restraint our very own child for any procedures. It is one of the most painful experience ever. [It doesnt help even when one knows that whatever needs to be done is for the good of our own kid. At least, I feel this way each time. To witness your own child scream out in total fear, crying out for you to help her and yet you join forces with the other team in restrainting her down too... I cannot even begin to imagine what goes through the mind of every child having to go through all these painful procedures...] Will they understand? Or will they end up hating us? That reminds me of nurses and doctors. Even though the kids are not their own, it can still be daunting on these medical professionals. THANK YOU for being so strong. Whenever Charmaine cries out for mommy and just freezes up her body, I just cant control myself from crying... and when Charmaine sees me crying out too, she will cry even louder, saying, "I DONT WANT MOMMY TO CRY"! There I am, a nervous wreck, trying to stop crying, in order not to be the reason for Charmaine to cry harder and yet tears wont stop flowing seeing her struggle in fears.
As painful as it is, we completed the procedure and inserted the needle into her port-a-cath successfully, with the less than usual standard of 'steps' practiced in Singapore hospitals where port-a-cath access and de-access is seen as an very important task.
Next shock, do I want to leave the needle on her for the whole of the week. For people unaware of the port-a-cath care in Singapore, we are never allowed to leave the hospital or even venture out of the ward with the needle still inserted. They take great care in the needle and fear greatly for any risk of infection and believe that only nurses or medical professionals can take care of the port-a-cath with the needle carefully. So yes, another adjustment. After seeing how much Charmaine struggled, the RN adviced me to leave the needle on, I was there still numbed by the trauma of the poking of the needle and now, another decision. I wasnt quite sure what to say but decided to leave the needle on, while trying to adjust my mind from the Singapore practice. Gosh - thank goodness we left the needle on. Barely 5 mins after we walked out of the room, we were called in for more blood to be drawn. THANK GOD. Else Charmaine will have to be accessed again! No showering for Charmaine for this whole week with the needle. I am not going to risk her for anything. More shock to come, of course but I will leave it to the next time.
The general update from Dr Kushner is that he is rather concern for Charmaine's condition because the tumor has invaded her liver. In his own words, "Charmaine's disease is very large (meaning that her tumor was very big) and that liver is a very hard to treat area. It is an area where it is hard to eradicate the disease. There will be radiation for Charmaine 5 days after the first 3F8 infusion. Liver is an organ that is difficult to radiate and hence the concern too. We will most slightly treat Charmaine with another round of chemotherapy regardless of what the bone marrow results show and it will start on Monday 10th Aug. If bone marrow is not cleared, we will do another bone marrow biopsy after the 6th chemo - may do another round after 6th cycle if disease persist in bone marrow and start antibody treatment (3F8) after.".
It felt like a bombshell thrown onto me when I heard that the tumor site is an area of concern and worst of all, its difficult to treat, because its the first time I am hearing this.
I have to end this quick because we need to go to the hospital for her MIBG injection and CT scan soon.
Once again, thank you all for the prayers and blessing given unto us. THANK YOU all.
[My mind is now in a blur, having to figure out what to do after Charlene leaves next wednesday...]
Fasting from 12mn is not good for Charmaine, as she has not switched her timing over to NY yet. This means that there is a possibility that either she wakes up too early, or wakes up too late to eat before 12mn. So this morning, she has been asking for food over and over again, before her test.
Even telling her that monster will grow faster does not deter her to have a bite on her favourite food.
While Charmaine and Cynthia are in the hospital, Jase and I were out to playground for a good 30mins. Due to Charmaine situation, Jase had not been in a crowd with kids for quite sometime. The playground was full of kids and he sort of dislike the fact that it was not as quiet as yesterday. He played alone, took the slide alone, and it was obvious that, he did not enjoy himself much, without his sister companion. After which, we went grocery shopping and he reminded me to get two packs of chips for Charmaine, so that she can eat after her visit to hospital.
Then, for the first time, Jase saw horse carriages out on the street near Fifth Avenue as I took him to FA O schwartz to get them a toy each for being such lovely children. He is so excited and said that when Charmaine is well, they will go on a ride with Cynthia as a family. Took a picture with the horse and off we went to get air pistol guns for the kids.
Jase in his first subway ride:
Jase amazed with the horse on roads:
Jase in FA O:
The level of cleanliness seemed to be different as NUH. Kids are allowed to mix in the playroom and there is hardly any children on masks in MSKCC. Probably a different culture that we have to take note of.
Most families in RMH are here with either two parents, or a grand parent. So, as they knew about CYnthia would be here alone, even the doctor had advised her to think of a solution soon when Charmaine has infection or for Chemo, and needs to leave Jase alone. This is one of the disadvantage that we knew from the start when we decide to bring Jase over, but it sure beats over having the kids separated.
Jase in the playroom of RMH on Day 1:
Mommy Cynthia is still working out the options, and how simple it will be, if there would be a second adult that ought to be here. A pity that I am on self-funds. We probably will seek help from our neighbours here but cards are still on the table, and she is still considering.
It is 4pm soon and the kids needs to be awake. We are trying to wean them off the jetlag. The air pistols seemed to be a good weapon now.....
-- Updated with photos--
It turns out, all of us woke up at the wrong side of the world, and they only got to play it at 10pm.
(Thank you Wei Kang for the rice cooker!)
Eagle-eye Jase "found" Charmaine's bullet under the bed but it was in fact on her hands!
We have to take a shot of this "toilet/kitchen/sink" as Cyn Mommy is tormented with the fact that there is no proper washing area for her babies.
Monday, August 3, 2009
All awake at 0500. Consultation will start at 1300.
-Edited to update-
Early the day, the kids went to a nearby playground at 7am a few streets down from RMH. They came here as well the day before and some of the photos taken.
At 1pm, the appointment with Dr Krushner was set and while waiting, the children were in the playroom like other kids. It is a good enviornment considering that both of them could blend in very well after a few minutes.
There are alot of activities in this room
Shortly after the nurse called in Charmaine for a blood test, and this, kick off the series of her treatment in MSKCC. As expected, tomorrow will be a round of scans and she will need to be fasting from 12mn now.
All this while, while waiting for Charmaine and Cynthia, Jase spent his 5hours playing in the playroom as well as the marine fish found in the waiting area.
And... the DHL boxes finally arrived!
Saturday, August 1, 2009
We are all settled in for the night and kids are showering now. Photos of the plane will be put up after we tucked them in bed (hopefully soon).
The trip had been a veryvery lovely one and we are all blessed with the people around us, especially the ground staff, crew, and friends from New York. It had helped the first few hours in here, a pleasant one.
-- edited to add--
finally the kids are aslp now after drinking their milk. They had a late night on Thursday Singapore time and woke up very early on Friday Singapore time. Finally our Cyn Mommy has fulfiled her wishes in bringing the kids overseas. Though it was not the holiday that she would like, the kids did take their first ride in the plane together.
5 boxes of items are on their way here, and we settled in with 3 large luggages and 1 small luggage. 2 Strollers, with 1 here, and the big twin one to be delivered by SIA for us. The ground crew in both Singapore and New York were so helpful that it did made me felt a little redundant. Thanks to you all, who rendered their help to us from the ticketing, to the ferrying to the gate, all the way till we landed and got our ride from a friend's friend.
Char and Mommy on Buggy Ride:
In Ronald MacDonald House, we had faced with a small problem (or quite a big one, if not the fact that we were offered accommodation by the NY friend). Charmaine was hospitalised last minute for fever and we had no chance to inform RMDH. Due to this, they had thought that we are not making our trip and we nearly had no rooms for it. Lucky for the great chaps, they made a few phone calls and assured of our room in no time.
We landed quite late, and so, our tour in RMDH will be postponed till tmr.
Payment for the hotel has been made for a month in advance as well.
I took a few photos (will update later) on this room. Basically, it is a standard hotel room with a twin bed and sofa sleeper.
Messy Food Items
The kids do enjoy here, as they were running and playing all round.
They still have no idea that New York is actually very far away as they been telling people that, NUH is so far compared to here. All thanks to the technology, they have skyped with their grandparents, and GodMa Jolene.
Wei Kang korkor was nice enough to call into the room and boy, were they surprised of the phone ringing.
While there are inconveniences around compared to back @ home, (where even hot water is highly inaccessible), I am sure, things will get better when the time goes.
Cyn Mommy: OK I give up (cant remember the subject matter)
FeistyChar: No Mommy. U cannot give up. U must fight!
Charmaine will have a good weekend of rest, before her schedule to the hospital start again on Monday.
The kids had been awesome on the plane too. Neighbours around us gave us a thumbs up and of course, the kids, after the flight. I cant believe it, given that we were practically all over the plane, climbing up and down and asking for food, every now and then. They really love the pretty jiejies and the big headphone while watching the cartoons. Thanks to the crew for ensuring that the kids were well taken care off, and cuddled with a bed full of pillows. The visit to the sacred area created much anticipation and excitement for the kids, and I wouldnt be surprise if Jase comes back and says he wants to be a pilot. They pronounce pilot as pirate but let's hope, it is due to the air in the plane! =X
Their quieter moments:
And the rowdy times
Those that should help and can help, did not. But, it didnt stop our feisty princess and mommy. We really wouldnt be able to make this trip without all of your help, and the trip to here, was fantastic. It is definitely not easy for the next six months or so here for Cynthia, but I am sure the help we have, is all that we needed.
Good night to all, and we will update again.
For those who needed our address:
Ronald McDonald House of New York
405 East 73rd Street
New York, NY 10021
Unit # 502
Please let us know once you use our address and contact info, one way or another.
If you have time, do read up on
Captain Jase signing off: