Saturday, October 31, 2009
Apple Picking Trip with Uncle Brendon and their new friends - Brendon Junior and Patrick - Boss of Auntie Stephanie:
The weather has turned cold for the kids. I think our princess has grown alot there!
Kiddos first halloween!
Our feisty princess waiting for infusion for 3F8..
Friday, October 30, 2009
As Jolene has mentioned, our internet connection was down for a week and we only got it back yesterday, hence this very late update.
I'm typing this entry with mixed emotions. I had actually only wanted to update a few days later as I cant seem to gather the positive mood to write a decent entry. However, I know that many of my friends and many others following the blog is getting concerned. Thus, I have decided to write something. Hmm, I will make an effort to ensure as much rationality and sanity as possible.
So what started out to be a miraculously Day 1 of cycle 3 for 3f8 ended with me feeling somewhat lost and scared. It was a feeling I cant even begin to describe. To wish for pain or not. Charlene seemed to put it how it felt best. It has never ever occured to me that pain was an indicator. I've never heard another parent caution me that if there was no pain, than it would mean bad news. Hence, I was always kind of praying for minimal pain... not because I was aware that some sort of pain is good. It was more because I never imagine a day where there would be no pain with 3f8.
The nurses took turns and walked in a couple of times, waiting to give Charmaine the pain relief medication but Charmaine just looked great. It probably took me a good 5minutes or so to realise that something about no pain just doesnt sound right. The thought freaked me out totally. In a daze, I dont know how or where did I muster enough sanity to actually ask the nurse, "Can I ask a silly question? Does this mean that its not good?" Princess Lea (one of the nurse codename) looked at me and said "Well, she had pain from Mon to Thurs. So it may not mean anything." And when nurse Jessica walked in, Princess Lea immediately said to Jessica, "Mom is already asking me!" So realisation number 2, the nurses were already discussing amongst themselves. Just adds on to the insanity right at that moment. I thought I looked alright. The kids were just great. Charmaine was up and running immediately after the flush was done. Jase was happy, playing with his sister. I was kind of alive, I think. Another of the nurses, Cat walked into the room and gave me a big warm hug assuring me not to think too much into it. I nodded my head and probed further. Apparently, if the kid doesnt experience any pain from Monday to Friday of the 3f8 infusion, it was a sure sign of HAMA positive coming. At that point, nothing seemed to get into that head of mine. Even though she did have pain from Mon to Thurs, that one day of zero pain is enough to send me go crazy for awhile. Until I get the HAMA negative results, I guess my heart will never be peace and calm. Ironically, its not exactly like my mind has been anything near peace and calm since Charmaine was diagnosed...
Last week has been tough for me. I am not sure if I can blame it on HAMA, or is it just me reaching the lowest point. My fuse short circuited easily, my mind is just depressed. Even the internet and the lift broke down. What great timing. :-( Jase and Charmaine did great though. It must have been really tough for them to face a very grumpy mommy. I'm very sorry babies. :-( I just wished I could control my frustrations more but its so tough. Every night, I would promise myself that I would wake up happy tomorrow but I never did.
Well, I guess the important thing is that I am feeling better now.
Another hiccup last week would be the Home Isolation that Charmaine was put under. Sigh. Just one of those times when all the worse things has to happen all at the same time again. Saturday, there was a Pumpkin trip organised by RMH which I signed up for but didnt go eventually because there was a slight drizzle that morning and I decided against going. (It turned out to be a good call)
Saturday night past 10pm, I received a call from MSKCC. The fellow doctor called to tell me that a child in RMH was diagnosed with Influenza at 5pm that day and Charmaine was identified as one of the child exposed to the kid. FEAR. PUZZLED. WORRY. The 3 things that went through my mind when I heard it. Fear because treatment would just heighten my already very stressed out body and mind. Puzzled because I know my kiddos dont mix with other kids much and where and how could she have been exposed. Worry because if she was indeed infected, than all the hospitalization and stuff would just make my life turn upside down.
I asked politely if I could know who is the kid but was told it was illegal to divuldge. I wasnt keen to gossip but more to get a clearer picture if Charmaine was indeed around the kid. But yes, I was just left with no choice but to follow instructions. Home Isolation until Thurs and everyone including myself has to taken Tamiflu for 10 days. It cost USD $160 per pax for the medication. I wasnt very convinced that Char or Jase has been exposed because none of us has any symptoms at all. In fact, they couldnt be happier and more active. Nonetheless, it was for our own good, I cant exactly complain either. The only issue was the stress of confining the kids to the room and yet keeping them happy. But the kiddos did it. :-)
Yesterday, I heard from another neighbour that the kid was part of the Pumpkin trip and hence everyone who went on the Pumpkin Trip was treated as being exposed to the Influenza virus. OH GOD. But we didnt go. They probably got our names from the sign up list. :( Oh well, the important thing is that it puts my mind at rest knowing that we werent on that Pumpkin Trip.
Home isolation, all 3 of us on Tamiflu, Charmaine on her cycle 2 of Accutane, I should be grateful that I am here typing this entry unscathed. I am. Thank you all for always supporting us.
For now, the kids are excited about their first ever Halloween. The TV cartoons have been showing Halloween cartoons for a week so they know its Trick or Treat. But they dont exactly have any idea whats its about. Frankly, neither do I. I brought them out today to get their Halloween Costumes and Stephanie has arranged to pick the kiddos and me to her boss - Brendon's house to spend Halloween with his kids. The kiddos are very excited about spending Sat with both Brendon and Patrick - their new playmates. Jase is dressing up as The Black Ranger and Charmaine as a Pink Princess. Charmaine kept telling me "Mom, I'm so excited about Halloween Party and I'm ready!" :-)
Oh yes, I forgot to mention. Because of Home Isolation, Char didnt go for her blood test today but we will most slightly do it on Monday. The blood test results will only be out on Wednesday. I am praying not to hear any news from MSKCC. Their usual practice is no news when there is no problem.
Next week is another fully packed week. A week where even more prayers are needed. I cant help but gave a bitter grin after saying that. It just sounded silly to me because since Feb, there has not been a week in my life where no prayers are needed. And I reckon there will never be such a day anymore.
2nd Nov - Brain MRI
3rd Nov - CT Scan and MIBG Injection
4th Nov - MIBG Scan
16th Nov - Bone Marrow Biopsy.
I am telling my heart, my mind and my soul to be happy this weekend for Jase and Charmaine's Halloween celebration. Thats all I can do right now.
Before I end this entry, I like to say a big THANK YOU to Chew Lian for her package from Singapore. I had forgotten to request for them to include the Chui Kway mould in the package and thankfully, you did!!! We love everything and finished almost half of what was sent. :-)
Our Auntie Iris in NYC who has helped us greatly had a minor op today and hence, I would like to ask for some prayers for her speedy recovery (if its not too much to ask for).
Lastly, our 3f8 neighbour Elizabeth also had a somewhat uneventful cycle 3 of 3f8. I'm praying that both Elizabeth and Charmaine will be HAMA negative and will continue their cycle 4 together, as always!
Read a phrase last week - Life's a climb but the view is great.
I'm still climbing, holding on to the thought that I'm gonna reach the top of the mountain one day - where the view is gonna be all worth it.
I shall end this for now and wishing everyone good health and happiness.
Take good care.
Today's the date of the HAMA test results (NY date)... Can't sleep. Tried calling NY but there was no answer.
Cynthia, Charmaine and Jase have been fine the past few days. Their internet's down so there was minimal correspondence. Everything's down... lift's down... spirits were a little down but Cynthia assured that all's still ok.
PLEASE PLEASE PLEASE pray for negative HAMA.
Sunday, October 18, 2009
Many a times, kids are nearly lost during 3F8, yet when there is no pain, the same will apply.
round 3 of 3f8 had been a breeze for Charmaine. Almost too perfect on the last day. Yes she felt pain on the first four days. However, on the fifth, there was nothing.
Not a good sign, for it means, her body has develop resistance to 3F8, fighting against it, rendering the treatment useless. No, we do not want that to happen. Remember that the more the better for 3F8.
Her blood test will be on 29th october, please pray for her that she will never get HAMA positive. Have mercy on the pain but do not remove the pain entirely.
Thank you all for she will need this prayer big time.
Wednesday, October 14, 2009
After her morning treatment, she still has the energy to pop downstairs for the tuition. As Jase has been out of school for many months, his long summer break has finally ended. RMH has so kindly arranged tuition for Jase and to our surprise, Jase love granny alot!
Being close to her korkor, Charmaine insisted getting changed and sit through the tuition, colouring her apple while granny comes over for tuition.
In all, this round, is still manageable for our super Cyn Mommy.
Counting down to the days in New York! WHEE~
Tuesday, October 13, 2009
I am just going to write a very short update.
We just came back from the hospital after completing Day 1 of 3f8 (3rd cycle).
Both the kiddos are now sound asleep...
Its a long day as compared to our usual discharge around 2pm. Nonetheless, Day One(1)s are always much longer because all the kids have to do a CBC (finger prick/stick) to check the blood counts and neutrophils. Also we have to be seen by a Nurse Practitioner who will certify if the kid is good to go ahead to receive the treatment for that week.
Today, we were pretty much the last one to receive the 3f8 infusion... started about 1.30pm. Jase was really tired and sleepy. Thankfully, Iris arranged to come by almost every monday knowing its the toughest. (Thank you Iris! Really appreciate your help and very grateful)
To keep the long story short, Char did wonderful today!!!
Of course, she didnt escape totally unscathed... BUT I consider today a miraculous Day 1!!! Our little feisty princess slept through almost the entire infusion except for the last 10ml (which was probably the last 5mins) where she woke up crying in pain. They had to give her 2 rescue of pain relief med - Dilaudid (which was 1 less than the maximum dosage she had received). She fell asleep after the 2nd rescue was given and slept throughout the flush of another 20mins.
Despite the pain she experienced today, I am certainly most willing to live with the side effects of today. :-)
Baby girl, you are a superstar today. Awesome. You are mummy's pride. :-)
Had to ruse her up at about 3.45pm as Jase was simply too tired. She wasnt even cranky!!! Oh god, what did we do right today? I wish for everyday of 3f8 to be like today!!!
I have to go get the chores done before the kiddos wake up...
Praying that everyone has an awesome day like we did.
THANK YOU THANK YOU. I cannot be more grateful for the prayers that worked the miracle today!
Sunday, October 11, 2009
The adventure will begin.
Godma Jolene and Charlene jiejie are heading to New York to peep on you!
Cyn Mommy, Godma Jolene and Charlene jiejie are all plotting weeks full of fun with u all.
Snow or no snow, we'll have our fun!
So start counting down together with mommy and we'll see you in no time.
Hugz & kisses!
Thursday, October 8, 2009
Here's the video
Hama test - Negative!
Some post cookie-making session photos to add
The Skype telephone rang and I was greeted by very healthy-looking Cyn and Jase.
Jo: "Hey! The colour looks so much warmer!"
Cyn: "Yes, we were experimenting with the colour contrast and lighting cos we always look so pale and ghostly on Skype."
Jo: "Where's Charmaine?"
Cyn: "She's busy doing something. I dunno what."
Then Charmaine popped in to complete the family portrait. (As seen above in the bottom 2 pix.)
Then it was her turn to have some screen time.
I didn't know what she did with the colour settings but she slowly disappeared into whiteness. Kinda reminded me of an angel.
As we always have difficulty hearing one another via Skype, we've to use the phone to talk. While the adults talked over the phone. The kids would be making funny faces at the camera and asking if I could see or hear them as well.
Then, they would pester mommy for them to have the phone...
And finally... their MASTERPIECES!
Monday, October 5, 2009
My little princess Char just swallowed her 14th dose of Accutane with ease and delight!
YAY! I'm just so glad that we have completed the 14 doses of Accutane!
She woke up this morning with a terrible nose bleed, blood on her pyjamas, pillowcase, bed sheet... I got a shock. Got her to sneeze out her mucus and it was just blood and more blood.
I contemplated calling the hospital but decided it was pointless. It was a Sunday and there are only fellows around at the Urgent Care. I was already taught that nose bleed was one of the common side effects due to the dryness and we have already completed 12 doses out of the prescribed 14... I have faith that Charmaine would finish unscattered. After all, she even enjoyed the taste which I was told that it would be an uphill task getting some kids to even put it into their mouth!
THANK YOU for the prayers. It must have helped. I am very certain all your prayers have brought us this far! Please keep it coming. Because of your prayers, Charmaine has completed 2 rounds of 3f8, radiation and her first cycle of Accutane!!!
Her nose bleed finally stopped an hour later and I gave her the Accutane as prescribed. I told her to drink lots and lots of water to prevent the bleeding again and she smartly obliged.
Couldnt help contain my excitement even though its just a 'mere' completion of 14 doses of Accutane. Its simply another milestone for me and the feisty team. :-)
Silly I know, but I just want to share with you this joy I am feeling right now!!! I am keeping my fingers crossed, hoping that there will be NO MORE nose bleeding!
Now that Accutane is completed, in the next few days, if her HAMA results turn out normal (which means NO HAMA), than Charmaine will start her GM-CSF injection (which I personally feel is as daunting as the 3f8 itself - irritation on her insaflon area, pain, redness, itch and swell)on wednesday and she will receive her 3rd round of 3f8 next week!!!
Gosh... its already the 3rd round... Time flies!
In the mean time, please keep those prayers coming for NO HAMA!!!
THANK YOU everyone!
We appreciate it sincerely, from the bottom of our hearts.
Cyn mommy, Jase and Char!
Saturday, October 3, 2009
I was going to write about our cookie baking session at Stephanie's house but I checked my email and received an email which saddens me greatly. Another NB child. Another Stage 4. Another devastating mother.
I really cannot bring myself to even write about what went on last Sunday anymore...
It is no secret that I am a receiver of many help and is still in the process of receiving help from kind souls everywhere. In the most ironical way, I seem to be the most inappropriate person to say that I want to help but I do.
3 weeks ago when Charmaine went in for her Bone Marrow Biopsy, I saw Dr Kushner. I dont know what came over me but I decided to let the words flow out of my mouth (even though I know it is probably very silly). I asked Dr Kushner, "Is there any way I can bring the antibody back to Singapore?" Dr K let out a big laugh and had a smile on his face which seemed to say "Just what this ignorant young lady is thinking here!?!?" Than he went on to say, "impossible, we dont even produce enough for our patients here." Than I went on to probe further, "I remember you said that the drug formula has already been sold to a drug manufacturing company who is looking to commercially produce them. Maybe I can find out more?" He laughed again and said maybe Dr Cheung would be able to talk to you more.
So that was it. I felt silly. And I felt stupid. And to make matters worse, that day wasnt a good day either. So I just got more depressed with my own stupidity. And hence I decided to just shut up and not probe anymore. Nonetheless, the thought is always lingering at the back of my mind...
Bumped into Dr Kushner again 2 weeks ago and first thing he asked was "So did you manage to get your special package (antibody 3f8) back to Singapore yet?" I was embarrased and replied, "Was it really that funny? I know I am being silly but I just had to ask." I know he meant no harm at all. And I agree that he has every right to laugh because I am indeed being very silly.
The receipt of this email once again reminded me of how close and yet how far I am to being able to pay forward all the kindness that has been showered onto us.
It is frustrating. Many neuroblastoma kids in Asia who can afford a little bit are probably in Singapore since we have one of the best surgeons and yet the higher hopes eludes everyone else who simply cannot afford the USD $350,000 upfront deposit.
I have never been a science student in my entire life and the best medical knowledge I have is feeding medication to my kids when they have a fever or flu. Charmaine's experience has taught me more medical knowledge than any textbooks could teach me. Yet, what I know doesnt even amount to a fraction of what most NB parents in the New York knows.
I know that 3F8 is a clinical trial drug. But hey, talk to the parents in New York and they will tell you that if 3f8 is not effective, why is the rest of the states using antibody treatment as well?!?! (CH14.18 is also an antibody which rides on the results of its predecedant drug, 3F8 - pardon my very layman explanation here).
Be it clinical or not, it gives way better hope than the opposite of having none. I am in a NB group in FB which is based in UK and they have recently organised a conference for which doctor(s) from MSKCC will participate. Because one particular parent who has lost their child to neuroblastoma is fighting very hard to convince other parents of NB kids in UK that 3f8 is indeed very good.
Am I begining to sound like a salesperson here? I guess what I want to say is that whether 3f8 is good or not, it is simply not fair when most of the other unfortunate kids do not even have an option to reject the treatment. Because the treatment is not even available to them in the first place!
And yes, I feel bad. I feel guilty that my little girl has the chance to be here whereas the other ones couldnt.
I know being a one man show, I cannot accomplish anything at all. I can only say, I can only wish. I have no idea how. I have no connections. I am not even in the medical profession to begin with! I do not know what the laws in Singapore state.
I do know that there are many kind souls out there.
Maybe I am just remotely hoping that amongst one of the many kind souls out here, someone may have an idea. Maybe, just maybe someone would be kind enough to point me to a direction... I know that it may take years and years before we can even come close to having the same percentage of survival in Singapore... And I know that maybe some of the doctors may have already been looking into doing whatever they can...
But I feel oblige to mention it here.
As much as I am still fighting my little girl's battle with this terrible monster, I am sure that Charmaine would want other kids like her to have the same chance as her too.
Maybe, just maybe... if there's anything you think I am in a better position to find out about... please do not hesitate to email me.
I do not talk to the other NB parents as much as I wish, or as much as I should.
I am always hanging out with my 2 kiddos and living in our own little world because I am tired, because I am drained... because I dont dare, because I just dont like to talk much anymore...
Although I should focus my every ounce of energy on my kiddos. But we are here today because of everyone of you who helped in one way or another. I may never be able to repay this gratitude to each one of you personally, but I want to pay it forward... I dont know how but I really want to...
I'm going to end this here as my heart is still heavy after receiving that email.
I am utterly sorry for writing such a depressing note... forgive me.
Friday, October 2, 2009
Almost fell asleep while playing with her, called her this morning, in time for her "yellow medicine". As Mommy Cyn has put in, "it is a real tedious job preparing this medicine"
Finally, the show is up! =D
Of course, our strong Charmaine knows very well, the monster is kept at bay and she took in the medicine in less than 2 secs. Look at her big smile.
Today they had gone to MSKCC for her HAMA test and she whined about how the needle at her "circle bone" was hurting her. Apparently, based on what future-nurse Charmaine says, the anethestic was applied off center, so it hurts her while the needle was poked in and out. So she proudly declared that she cried for awhile. |||
Our babies have also been eating so much recently and probably it was due to the weather turning cold. Charmaine take in cold very well, but she claimed she wore two layers while Jase had three on. Then, came the long list of what they ate for dinner -Pork, cauliflower, brocoli, mushrooms, soup, the red-thing-gonggong-put-in-the-soup (gou qi zi) and alot alot of rice.
Kids are off now to help Cyn to do the dishes~