Thursday, April 23, 2009

Qays has an infection...

It was confirmed that Qas has an infection...gram negative bacteria. The specific organism will be identified in a couple of days. The other two babies with infection don't look good. One of them is so thin you could see the ribs and bones poking through. He barely moves. If Qays is infected with the same organism...It scares me to even think about it...

At the moment he looks tired, but he appears better than yestesday. He has started taking 8ml of milk every 3 hours.

I had my chest x-rayed today, thanks to Dr Eeson of O&G, HKL. If he leaves it to the Oncology, it'd probably never happen. I did take a look at the film...the left lung doesn't look good. In fact, it looks pretty bad...

I hang on to my husband for strength. He is taking this better than I do, thinking positively most of the time. He truly believes that the antibiotics will work for Qays, and chemo will work for me.

Friends and pray for us

Wednesday, April 22, 2009


I still cry, still about 7 times a day in average, but the duration has shortened.

Qays didn't respond well to indomethacin. It played havoc with his kidneys. And now they suspected him of having an infection, which is no surprise to me because he is placed with two other premature babies who are having an infection. Last night he was taken off milk because his tummy suddenly couldn't process 14ml of milk every 3 hours. Today the doctors restart his diet with a mere 5ml/ 3 hours.

The next plan is to stabilize his bloood count and blood gas, and retry indomethacin.

I finally mentioned these little nodules that emerged on my mastectomy site to the O&G doctors who immediately notified the surgical team. My appointment with the oncology team has been carried foward, for them to do all sorts of scans and restage my condition. I'll probably start chemo sooner than expected.

Anything for my children.

My biggest concern is I may not be able to visit my son 5 times a day like I'm doing now.

But I've come across some of God's gifts...a baby who was born at 24 weeks gestation and weighted 500gm was finally discharged from the NICU after 4 months, a 28-week baby weighted 780gm who are still surviving...

I will get through this. God will help me.

Monday, April 20, 2009

From The Hospital...

I'm writing this from HKL. I'm severely depressed. I cry at least 7 times a day. Some days I managed to keep my spirit up, telling myself all will turn out fine. Most days however, I'm a wreck...

I was given spinal anesthetic during the c-sec, so I was happy to hear Qays' screamed the moment he was born. It was beautiful. Then he was taken away and I didn't get to see him until the day after...

He was diagnosed with Respiratory Depressed Syndrome, which is expected in premature babies, but it pisses me off because I did take the Dexa shots twice! But that wasn't all. He also has a condition called PDA, Patent Ductal Asteriosus. The hole in is heart which is supposed to close after birth did not, flooding his left lung with poor oxygen, making it difficult to breathe.

I have confronted a lot in my life. I have cancer cells in my body right this minute, multiplying happily. But even that doesn't make me as depressed as I am now with my son's survival uncertain.

Today he started on Indomethacin, a type of drug that could and in his case WILL shrink and eventually close the hole in his heart.

But Qays is beautiful, as beautiful as the sound of his name. He's fair with sharp nose (unlike mine which resembles jambu air at its best), and long fingers and toes.

I love him to pieces already...

Do pray for us, for his complete recovery.

Sunday, April 12, 2009

Another Aunt Joins the Club!

I found out on Friday that my dad's youngest sister has just been diagnosed with both breast and ovarian cancers.

When I was tested positive BRCA1, the darn breast cancer gene that happily carries along ovarian cancer in females and prostate cancer in males, I told my aunts on my father's side, the hero who passes me this adventurous life, to get tested too. Aunty Enon told me that she doesn't want to get tested (despite the tumor that she has sitting on her ovary right this minute) because she doesn't want to know, because knowing means she her children and grandchildren are affected too.

What kind of an argument is that? Even if you don't get tested, if it's in your gene, there is a 50% chance that you have already passed it on to them anyway!! For me personally, it's better to know so that you can plan your life accordingly. The moment I was positive for BRCA1, I quickly surveyed for a house to buy, and in my hurry I decided on a house I probably wouldn't buy had I have more time in my hand. I also decided not to wait for a second child, because my body might give up on me anytime. And between all the rush, the cancer decides to show up again. I beat it only by a few months...

Anyway, although organ mets is something all cancer patients fear, I have come across people who live with bone and/or lung mets for as long as 9 nine years..and still living. And these people withstand chemo like it were income taxes - something we hate but has to be done anyway. I sure hope I could be as strong as they are.

Well, I'm off to hospital tomorrow, the c-sec is scheduled for Wednesday 15th. I'm not worried about the surgery itself, because it'd be my fifth if we count the oral surgery to extract four teeth in 2001. That was the first time I was put under GA. But I'm worried that Qays is not yet ready to stand on his own. These past 32 weeks, I have been breathing and eating for the two of us. Come Wednesday, he's on his own. But I have to have faith, because this is something that I have to do...

Pray for us...

Saturday, April 11, 2009

Nice People

You know, sometimes people surprise you by doing nice things. I'm one of those who don't expect favours or special treatment for whatever reason. I don't expect people to give up a seat because I'm heavily pregnant, or carry my things because because both my arms are at risk for edema after axillary clearance, or hold the door open for me because I'm a lady etc. I mean, I do what I can as long as I can do it, without favours whatever. But some people have done some nice things for me, which, I admit, makes me warm all over.

Last Friday when I was absent from school for the Dexa shots, my students called me from the school public phone.
"What time are you coming to school today?"Aminah asked.
"Not coming. I'm on leave", I told her.
"What!!! Miss, not today please. You have to come to school!" The scream was deafening.
"I can't. I'll talk to you later. Bye" and I hang up.

Seconds later, the phone rang again. This time it was Nadirah.
"Teacher, please come to school today, even for a little while", she begged.
"I can't. I really can't".
And she begged and begged but still I said no. Then on Monday when I was busy marking exercise books, Nadirah came into the computer lab and switched off all the lights. I was taken aback, but I wasn't stupid. My birthday was only a few days ago (Earth Hour, to be exact) and these kids were so elementary I could smell what was going on in seconds.

Then Aminah, Nadirah and Nasuha came in with a cake and candles from Secret Recipe, singing Happy Birthday in off key. The rest, is history.

Then on Tuesday, on my last day of school before I was ordered a rest by my gyneacologist, a collegue of mine, Indira came to wish me luck with the coming treatment. Then she told me that she and her children go to pray on the weekends and she asked if I mind them writing down my name on a piece of paper and put it at a temple to pray for my health. She's told me weeks before that she was looking for a universal prayer that she could use to pray for me. And I was touched, because we are of different religion. I told her I don't mind, that she could go ahead, because a prayer is a prayer, and it's what she believes in that counts.

And last Friday, 10th April 2009, another collegue of mine, Anis treated a bunch of us, whom are often referred to as GBS (Geng Bas Sekolah) to a lunch at Kenny Rogers at The Curve. Mek Na, K. Rozi, Indah and K. Mai ate like pigs. The lunch was for me actually, sort of a good luck with the delivery and the forthcoming treatment.

Then there are others who give me money...

This just reminds me that people can be nice sometimes...


Sunday, April 5, 2009

Darn Dexa!!!

When I visited my gynecologist the other day, I was given a shot of dexamethasone on the butt, and another to take home for Friday's shot, to be done by a qualified gynecologist of course. The purpose was to help baby's lungs to mature, in anticipation of the early delivery. The first shot was pretty painful, but the second one was easier to handle. But what I did not expect was this lethargy that engulfed me this entire weekened!!

Well, it could be due to something else, you can never be sure with cancer cells in your body. It could just be them zapping up all the nutrients I so eagerly consumed for the sake of my baby. But there I was lying down on the couch like I'm already on chemo, and breaking my promise to my little girl that we would play with water colours today...

And Qistina, my angle, has a lot to cope with at such a young age. She already understands what being sick means, because Mummy is always too tired or too sick to play. She would repeat to me, as she softly touches the place where my left breast used to be and said "Hurt here? Not hurt here?" as she moved her little fingers to my reconstructed right breast. She knows that she is forbidden from asking me to carry her around in my arms, but what mother could resist such pleasure so I carry her anyway, from time to time when my body could handle it and when the father is not around. Then she would ask me to carry her on my good side, because the left side hurt. And she never asks me for a ride on the back either...

How I wish for all these restrictions and limitations to be over so my life could resume. I have a huge mountain range in front of me, but I'm not sure if I'm all equipped to conquer it all.

Thursday, April 2, 2009

Qays Aiden

Well, that's the name I've been fighting for for my baby boy and so far I've won. It's pretty easy actually. Easier than when I tried to get Qays Shafique and Qays Aqeel approved. I just trained my daughter to say the name and repeat it to my hubby as many times as possible. Finally he agreed, but warned me not to get hysterical if the people in his hometown in Parit pronounce it as Qays Udin or Oden instead!! Qays is Arabic, meaning firm while Aiden is Gaelic, meaning little fire, or fiery little one. I think it's kind of suitable considering he'd be born premature. Just hope my hubby won't trick me and register him as Oden in favour of his native tongue. On second thought, maybe I should register him myself...

I went to see my gynae today for a detail scan. Qays is in perfect condition. His lungs and kidneys and other internal organs looked good. The blood flow seemed ok too, as did his heartbeat. He weighs approximately 1.6kg now, plus /minus 100g. The doc said it'd be nice if he could weigh at least 1.8kg at 32 weeks. Well, I'm working towards 2 kg actually. I'll deal with the excess fat later. Let's just hope chemo will help me shed some of the pounds. But looking back, that's kind of wishful thinking. I gained 8 to 10 kg after my last chemo in 2004. Darn steroids!!!

Anyway, I was forbidden from going to work beginning 8th April, was ordered some serious rest. I'll be admitted on the 14th and will have the c-sec on the 15th.

So, do pray for us my dear friends. I sure hope that this little fighter that has been busy stretching my once flat tummy post DIEP-flap to its limit, to be born strong and healthy. Then maybe I wouldn't have such a hard time dealing with (uweekk!!! Sorry, can't help myself) CHEMO!!!!