Open Letter To All, From Cynthia

For parents of kids suffering from neuroblastoma,

Like to share a few websites I gotten from Char's doc, Dr Aung Lele. According to Dr Aung Lele, these websites are more reliable and I hope it would help other cancer children's parents who are surfing for more information.

www.mskcc.org
www.cure4kids.org (St Jude Children's Hospital)
www.cancer.gov

Dr Aung Lele also mentioned 2 medicines that would improve Charmaine's chance of survival.

1) Monoclonal Antibodies
[This drug can increase the chance of survival from the current 20% to 40%. Sadly, this drug is only available in US and Hongkong and they do not sell it as its still in the clinical trial phase. Nonetheless Dr Aung Lele is going to try to write to the doctors in Hongkong to check if they could send some for Charmaine. Really need everyone's prayers to get a positive response from the doctors in HK so that Charmaine is able to get the antibodies to increase her chances. In case some might ask, why dont I fly Charmaine down to HK. Well, the catch is that they only provide for Hongkong citizens as one of the creators of the drug is a Hongkonger. who is now practising in the States.]

2) NK cells
[which NUH is currently using under their joint research with St Jude's Children's Hospital]

The above drug is to be used during the bone marrow (stem cell) transplant phase.


For all my friends,

Jolene has written that I suffered another setback recently and it was not appropriate to mention it earlier. Indeed, this may seem like the least of all the setbacks in my life lately. However, it still resulted in another changed circumstance in my life and poses another challenge.

I found out that my maid is pregnant on the 31st March.

When the clinic called me up, I had a real bad hunch but I didnt cry. For some very weird reason, I just didnt cried out in shock. I just kind of went numb. I walked to the room to ask my maid what was the problem and she confessed that she might be pregnant and it was only just once. I was shocked.

I dont blame my maid for what she did but everything just happened in such a bad timing. Just when I needed her most because Char is only comfortable with me and her and she has been with us since Char is 6months old. The kids and all of us see her as part of the family.

The subsequent days went be pretty quickly in a blur... I had to figure out what to do, send her back, get a new maid and everything while trying to fight Char's infection with her in the hospital. I just kept telling myself not to think too much and that I would be able to handle whatever it is as we go along.

The truth is I am more saddened at the fact that once again, someone is going to walk out of my life after so much we have gone through together. I know this is part and parcel of life and that I am not unique; everyone else has to deal with the pain of friends coming in and walking out of our lives every now and than. But I am just human and I still feel the sadness and sense of loss no matter how many times I have already gone through this.

Anyway, thanks to everyone's prayers and blessings, Char managed to fight the infection once again and I had to request for discharge on Monday night because I had to return home to settle my maid's departure on tuesday morning.

And yes, my maid left on 7th Apri and I had to manage and cope with the changed situation myself.

Jase and Charmaine, if you are reading this many many years later, I just want to say sorry for my infrequent outbursts because I am very exhausted.

All these years, I relied much on my helper and we would rotate our roles, while one is doing chores, the other would be playing or watching them. Now, I have to multi-task myself. I am now the mom, the dad, the chef, the cleaner, the playmate, the accountant, the adminstrator and etc...

What makes it extremely stressful is that because of what Char has gone through, she doesnt like to be left alone too much. Hence the kids would always be calling "Mummy, mummy, come". "Mummy mummy come" while I am cooking, washing or cleaning... and it really makes coping with the situation much tougher than before where I could pretty much leave the kids to play and fight among themselves while I do the chores.

Furthermore, with Char being neutropenic (low neutrophils count - low immunity), I also have to wash everything from utensils to toys and floor, a couple of times a day to make sure that things are kept clean and infection is kept to a minimal.

And the marketing and fetching Jase to and from school. Everything sums up to an astronomical amt of task because Char is not allowed out of the house and yet she doesnt like to be left alone at home with my folks. So i cant do the marketing which needs to be done before Char gets admitted tmr and Jase cant go to his classes because the mall is air-conditioned and air-conditioned areas/malls are totally out of bounds for patients undergoing chemo with zero immunity.

Special thanks to Jolene, Charlene and Angela for coming down over the weekend to help me with the urgent marketing. Thank you so much.

Thank you to my folks too. My mom who is ill herself and yet also helping with the washing and folding of clothings everyday. My dad who must be very tired, and yet travelling so far just to get something for Charmaine.

Quite frankly, I feel like the monster myself. Because I would raise my voice to get the kids not to mess up the place where I painstakingly tidied up. And I feel very guilty.

Jase, I know you usually get the brunt of mummy's outburst. Forgive mummy because I love you just as much as I love Charmaine. I am just very lousy at coping with this changed situation, and having to deal with much of it myself.

The biggest worry weighing on my head now is I CANNOT FALL SICK. Not even a simple flu because I am the main caregiver to both Jase and Char, especially Charmaine who has to go hospital weekly and warded almost every alternate week for days. If i fall sick, I wont be able to stay in the hospital with her and it would be disastrous now that I lost my maid, the only other person whom she is comfortable with.

I know I am not the most unfortunate soul in Singapore right now and I know that I am not literally alone in this battle because of the countless number of friends rallying me on. Its just that this is my burden to shoulder and my challenge to overcome.

Many of you friends ask if you can help me in anyway. I appreciate it and its not that I am too shy to ask for help. Its just that most of the times, I have to do the chores myself. Jase wants mummy to sleep with him and Charmaine wants mummy to sleep with her. Even though now I am sleeping between the kids, both of them would want me to face them. I wish I can clone myself.

To cut the long story short, I am very exhausted right now. I barely have any energy to reply any of the text messages friends sent. And when I do reply, I know I probably sound very curt. Please forgive me for my non response and please forgive me for not being able to stay in touch. I dont exactly wish to say much most of the times too.

Just a little plea and gentle reminder to the friends who do visit Charmaine, please refrain from visiting her if you are feeling slight unwell or has family members who are sick at home. Just like DBS CEO Richard Stanley, Charmaine is very prone to infections and the risk of cancer patients dying from infections is very high. As such, I seek your kind understanding. Also, if you do visit, please remember to wash your hands cleanly before getting near Charmaine. As Jase and Charmaine are very close to each other, Jase also cannot afford to get sick. So please kindly practise extra caution with Jase too. This would apply to anyone visiting any other cancer patients.

I know I probably sound like a paronoid mummy now. Please bear with me. Friends who have known me before this episode would know that I never believe in such extreme cleanliness because I grow up in the era where "we eat dirty and we still grow up fine". Hence, I am also trying to deal with changing my own beliefs when it comes to bringing up kids, especially cleanliness. I wash my hands numerous times a day to a point where I am getting extreme dry skin and scalding myself countless times a day while washing all the utensils in hot water.

Thank you for listening to me whine. I would like to end by saying that no matter how tough it is, I am still ploughing on and I am not giving up.

May this find everyone of you in good health.

Take care and warmest regards,
Cyn mummy