Too many happenings...

Tuesday, April 13, 2010

I dont even know how to begin but lets just start by saying, WE COMPLETED CHEMO AND ARE HOME TODAY!

Charmaine's fever took a sharp climb on thursday morning to over 39. But it also subsided on Thursday after the docs switched her antibiotics to a stronger type - maropenem. More blood cultures were done and thankfully all were negative.

I was definitely worried over the postponement of her chemo constantly because of her persistent fever. Highlighted my concern to Dr Aung and requested for them to start her chemo despite her fever. Once again, we are on the same level of understanding and she started the chemo immediately along with the antibiotics. Fever came down miraculously!

Dr Aung dropped by everyday when we are inpatient and on Friday, her first words were: "Not sure if its the antibiotics or the chemo". We happened to be in this situation a couple of times and one can only guess whether its the antibioics or the chemo that worked!

And hopefully, this is THE WEAPON that will totally destroy whatever cancer cells still lurking in her body!

A little piece of good news~
In NYC, they have a practice which will be a culture shock to any Onco family from Singapore - Us included! Patients are allowed to go back home with their needle still in their port. I was mortified the first time we stepped into MSKCC for our first appt and was asked if we want to leave "IT" in or not. It took awhile for me to register the "IT" but once I realised she was referring to the NEEDLE, I was freaked. I asked in shock, "Is it safe? Is it even possible? How do I take care of it?" After all her answers, I said, "Please pull IT out". But Char was really traumatised since it was our first time in MSKCC and seeing how terrified she was, the nurse suggested to leave it in instead. I obliged skeptically. And within minutes, we were called back into the procedure room to have more blood drawn. WOW - that was one huge lucky call. Had we pulled it out earlier, she would have to be poked again! Anyway, we went back to RMDH with the needle and it was the first time I realised HOW convenient and HOW much more comfort it provided to the child! For the next few days, we had scans lined up daily and they just easily hooked her gripple needle up whenever they need to. No fuss, no struggling, no tears, and most importantly, NO TRAUMA! We quickly got adjusted into our new found practice and Charmaine is actually so comfortable with it that she kept commenting: "I wish they can be like New York so I can go back home with my needle and doesnt need to stay in the hospital for so long." My baby girl didnt understand that she still has to stay inpatient even if they allowed us to go back with the gripple needle whenever she has fever. But of course, it would make a huge difference when it comes to doing chemo that runs for a couple of hours over a duration of a number of days or a week! Because it would potentially mean that we dont have to stay inpatient for 5 days and yet we come can daily for infusion without having to be poked every single day!

WE ACHIEVED THIS OVER THE WEEKEND! Dr Aung believe strongly in this change and fought hard for us. And I overheard that there were also nurses who supported this first crucial step. And we did it! We all did it! Charmaine is the first patient to be allowed to go home with her gripple needle. Frankly, Charmaine handled it with much ease and I should say, happiness! After all, its not anything new for her since we have done this countless times in NYC. I'm not sure if the rules are entirely changed, I believe not so and I can understand their concerns. Its a first for many of the nurses since many have not been exposed to such practice and they were so sweet to call up and check upon Charmaine when we were home for that couple of hours. But I am glad that we have all taken this first step. Its one small step but it means a huge quality of life for these onco kids. Imagine not having to be inpatient all the time. Imagine not having to be poked all the time. Charmaine couldnt be happier. She is so thrilled but I had to caution her that she is the first patient they allowed home with her gripple needle in Singapore and that she should take good care of it so that other kids will be able to go home with their needles like her in future. She was rather proud about that and I am just glad to let her have her little moment of pride amongst all the pain that she has experienced.

A sudden loud tearful cry of pain on her left thigh on Saturday...
So we came home for a couple of hours on Saturday (home leave) because of some administrative procedures that didnt allow us to be discharged fully until Sunday. And we werent planning to return until bed time at 10pm. Charmaine was jumping for joy the moment we stepped into our house on Sat and played the whole evening with Jase.

At 7:30pm, Charmaine suddenly started crying and kept bending her left leg, complaining: "Mommy, my leg pain!!! Mommy, my leg very painful!" I was taken by surprise totally! Went into a panick mode, so did my mom. My mom even started crying seeing Char cry non stop. My tears started to gush out too. I was at a loss and I was so scared. Its something new and its bad. I prayed desperately that its nothing serious and it will go off! 15mins later, she was still crying and I decided to give her paracetamol and just threw everything into my bag, to rush back into KKH. Within 10mins of the panadol, she stopped crying and the pain just miraculously went off.

By the time we reached KKH, she could even dance to the Madagascar movie on her bed! But my guards were not let loosen yet. I couldnt. I remembered the last time she experienced pain suddenly on her right knee which progressed to total immobility and infections and swelling and all... within a couple of days... frankly, it just sucked. I was paranoid, actually tried to get the HO to call Dr Aung and kept questioning if we need to start Char on her bone infection antibiotics. I admit I was just imagining the worse and wanted to take extreme precautions. Char's dancing and laughters calmed my nerves eventually. I did email Dr Aung and updated her and of course acknowledged my paranoia.

And because of that pain episode on Saturday night, I decided to keep our bed on Sunday and requested home leave instead of discharge. Just in case. I didnt want to be going to A&E and waiting for hours before getting a bed or anything like that. Come Sunday, we returned to KKH at about 10pm and guess what, the entire KKH's aircon broke down! It was terrible, the nurses were perspiring and and one can only imagine the kids doing their BMT in Isolation rooms! Not to mention the mothers to be in the labour wards!

And since it was already bed time, I felt safe to head back home for the night before returning the next morning for our last day of chemo #3.

A Heartbroken Sunday
Sunday was a heartbroken day for me... I woke up to a message sent by Charlene and was shocked to see it. I was devastated and immediately started pouring. As much as I tried to keep my volume down, I guess it was still loud enough for the other families in the room to hear it. Ended up huddling together in tears.

Our closest family in NYC, another family with a daughter battling cancer, the only other Asian family in the whole of Ronald MacDonald House (Taiwanese), our neighbours living a few rooms away… Her 18 years old daughter passed on Saturday NY time. Both Charlene and Jolene met with them while they were in NYC and we were all just too shocked and too consumed by the sadness. Even though we knew she was battling cancer, its still very hard to accept the reality as it is.

For the entire Sunday, I couldn’t think straight. Her mom took care of me when I was ill. She calmed my nerves when Charmaine was bleeding profusely from her nose. She hug me so tightly when I received news of Charmaine’s HAMA and Charmaine’s relapse. She helped me packed all our belongings. She always watched over me and my 2 kids despite her own battle. Both Jase and Charmaine love them so much and see them as family! Whenever we sat down for meals together, Jase would sing and shout: “Yeah, we are YI JIA REN!” They were one of our closest friends and I depended on them a lot physically and mentally. I still can’t stop crying, typing this…

I don’t know HOW to return to NYC without my other family there. Already, I have been so worried with Charmaine’s heavily battled body. This time around, we had so many more fevers, it just seems harder and tougher for her to bounce back… her colors still look pale… I don’t dare to think… Most importantly, the kids are looking forward to returning to their other family and now… they are not going to be there anymore… I didn’t mention anything to them… I don’t know what to say…

Its too painful just thinking about them now… Another day, I will share with you how this 18th year old girl has taught me so much…



stacey said...

At times, words seem insufficient to describe those emotions of overwhelming feelings. When something goes terribly wrong, don’t go with them. Don’t drown yourself with negative thoughts; instead make the best of what you have. You and your child well being matter more than anything else in the world, not those emotional clutters. All emotions are powerful, they gather momentum. Don’t focus endlessly upon what seems like a “bad situation”. Rather face the unlikable event with a healthier attitude. Each time you need help; look for those who can cater your personal needs with not a judgmental attitude but with love, patience and understanding. We can’t change the direction of the wind, but we can adjust the sail to make it a better journey. Blessings.

The Peanut Momster said...

Hi Cynthia,

I don't know how to tell you this, other than to try it.You might be skeptical but it's been proven to work. Maybe you can start changing Charmaine's diet. I'm not asking you to let her eat different right away but to start giving her lots of green, organic vegetables juice every morning (which has either been blended or juiced). You can go to the link below to see what I mean:

I believe that diet can make a major difference in how we help our bodies to heal.if you google,loads of people have cured themselves by juicing and eating raw (vegetables and fruits) food. Just a thought, it's really worth trying.

Stephanie said...

Hi Cyn,

The Creator of Heaven and earth is also the creator of humans. He knows our physical body as He is the maker.

Many months ago, even before you went USA, Lord has foreseen this happening.

In fact, what revealed about Charmaine is, her body was best just before returning to Singapore.

The on start of Chem treatment is causing more harm then you realise. Why more fever? all the organs in her is rejecting the harsh poison that goes into them. This is the breakdown of her body.

I know when I get to see Charmaine, she is barely alive. Lord Jesus can't do much as you refused His direct access. Anyway, this will I pray for Char:

Abba Father, by the Grace of Lord Jesus, Charmaine is your beloved Child of God. You said all children belongs to you.

Abba, Jesus at the cross had already been judged for Charmaine's cancerous cells. Abba father, Jesus had also been judged for Charmaine broke down in all her organs.

She shall not be double judged by the devil.

Abba father, by the Grace of Lord Jesus, May you manifest your Lord's hand into Charmaine's cancerous cells in all parts of her body. Bind the satan out of the cancerous cell and throw them down to hell in the name of Jesus!

Abba Father, by the Grace of Lord Jesus, May you plea the blood of Jesus over Charmaine, over her body, soul and spirit. Abba father, may you sustain Charmaine's life to see the full deliverance by you. Glory to Lord Jesus! Amen Amen!

stacey said...

I agree with Peanut Momster. If you need help for juicing/ vege diet for Char, check this link There are volunteers who can give you proper info especially if you are new to this as some of them are cancer survivors and have years of experience in dealing with such diet. They used to deliver organic vege door to door for just $10, once a week. Not sure if they are still doing it these days. They are very much into naturopathic approach, and may not see chemo as something beneficial but I do find them quite knowledgeable about cancer diet as I spoke to few of them before. Hope this helps.

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