We are well

Dear All,

So sorry for the lack of updates...

Charmaine and I have been going in and out of hospital so frequently that it was so exhausting for me... We would be out and barely 24hrs later, the fever would surface again. I was worried and frustrated! Her temp just wouldn't stay stable at a normal range of 36.9 to 37.2. Thankfully all her blood tests results came out good. They did find a bacteria in her stool which they say may have aggravated her diarrhea this round... Even up till last Friday, her diarrhea was still persistent. Hence we had to continue her antibiotics for 3 more days and postpone her chemo to this Friday instead!

All these admissions and discharge finally ended on 9th May (which was when we just made it home to celebrate Mother's day with my mom and Jolene) but the abdominal pains continued for a couple more days. By mid week, Charmaine's temp stabilized at a normal range and we were able to enjoy our 'normal' lives.

I have no idea why but I've been feeling rather drained, both physically and mentally. Probably because I was expecting the last chemo to be more tolerable and less admissions and was doubly disappointed when it turned out that we had more fevers and more admissions. She was also visibly weaker...

That was last week. We are good now. It felt like so long ago since we had our normal lives... In our lives, no news is good news... I am very sorry for making you all worried with our lack of updates... I know how upsetting it can get because I myself am following quite a number of blogs of the onco kids in America and gets worried too when there is a lack of updates... However, there is an unspoken understanding between most of us onco families which I dont expect anyone on the outside to understand... its a life which many others have, a life outside of cancer... a life where we get about doing the simple and basic stuff, worrying about bills, fretting about the untidy rooms, doing the endless chores day in and day out and once we get back to that 'normal' lives of ours, we want to hold on to every moment of it. Coming back here to write brings back the harsh reality that I dont want to face and dont want to think about.

As Charmaine got better last week, her Godma Alexis brought us all out. I was jittery but I definitely wanted to give Charmaine a chance to be like any other child her age and having seen how happy she was when I brought her out briefly after chemo #3, I knew she needed to get out and play so that she would regain her strength and her spirit to fight back even faster. It was a much needed break for myself too. I have never been happier in a long long time. We packed our days away from hospitals with activities. Seeing Godma Alexis, hanging out with Charlene Jie Jie and going out with Godma Jolene was beyond awesome. The kor kors and uncles visited as well. I forgot my other life. I forgot that Charmaine is sick. I forgot everything cancer. I stayed away from everything related to neuroblastoma except for our doctor's appt and the antibiotics that she needed to take daily. And I stayed away from online blogging... I dont know why but everytime I type here, my tears wouldnt listen to me...

It was such a much needed break for me. I have so much I want to share about how I felt and how tiring everything is... but I had my break and I recharged my batteries so I shall not rake up those feelings of lethargic anymore.

We also celebrated Jase birthday last sunday at Josse's home. THANK YOU JOSSE! And thank you to all the jie jies and kor kors whom helped! It was a cozy and warm affair which gave me the opportunity to catch up with family and the few friends whom I call family. It meant a lot to me, to see the happy faces of my children. It reminded me the meaning of life and provided a great source of strength for me to continue our battle. Its always bittersweet as it brought back memories of last year. Last year, I didnt get to spend Jase's birthday with him as Charmaine was admitted in hospital for fever and Godma Jolene and Charlene jiejie had to take leave to spend the day with him on my behalf. And last year this time, we were preparing to go into operation... the whole mood was just sombre. Hence, I am thankful, grateful and especially touched that we get to celebrate this year and spend this special day together and the kids had such a blast because of the kor kors and jie jies! I think Charlene jie jie had a bad muscle ache for days after the party! HAHA.

For the past week, Charmaine has been shouting across my face, telling me how HAPPY she is and she has been thanking me every single time for all the little things that we do, even if its just going across to United Square for a short walk after a finger prick and check-up at KKH. My heart feels so warm and I am so happy. I always make it a point to tell Jase and Charmaine how thankful I am for their excellent behaviour and for all the things they did right or did not do and I think Charmaine has learned it very well! Jase, being a boy tends not to be as vocal as Charmaine is.

For those of you following Charmaine's progress, here is a brief summary of the latest in case you didnt catch it during the previous post. Basically, Charmaine's latest scans in April showed that her right femur (thigh) is still not clear. After seeing her scans, the MSKCC doctors have ordered for Charmaine to have another 2-3 cycles of chemo (irinotecan and temodar) and repeat all the scans and tests. I will than send all the reports and scans to NYC for them to make their evaluation and recommendation. As of now, she has already completed 4 cycles of chemo for her relapsed treatment and we are doing the 5th cycle this coming friday. (All in all, since diagnosis until today, she has already done 9 cycles of chemo in total - going into our #10 cycle!) In short, we will be here in Singapore for a couple more months.

Thats about all I have for everyone for now. Please kindly bear in mind that when you dont hear it from me or anyone of us, it usually means 'No news is good news' in our world. I seek your kind understanding and am grateful everyday for having all of you supporting us in one way or another. Even when I stayed away from everything to recharge, I never once forget the kind souls in my life. Just like this is a lifelong battle, all of you are my lifelong angels in one way or another.

I wish everyone happiness and good health.

Love,
Cyn mommy

PS: A very belated HAPPY MOTHER'S DAY greeting to all the great mommies out there!