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.