Out of NICU

If everything goes well, Qays will be discharged from the NICU later this afternoon, to reduce the risk of infection. And he's stable, although the PDA is still there, after 4 days of Indomethicin. Thanks to all of you for the prayers and well wishes...

My left arm is now swollen, probably stage 1 lymphoedema. Will get it wrapped today, or tomorrow...

And my cancer is getting worse by the minute. Lots of little nodules , tons of them actually, are comfortably making my left chest their home. The skin has gotten red and it's warm to the touch, which means the cancer is aggressively attacking all the healthy cells. I'm going for my radiotherapy appointment tomorrow, and onco doc has promised to see me then. I'm thinking of an earlier chemo...

To all friends and readers, thanks for your support, because it does mean a lot to me...

Qays is free of infection

Alhamdulillah...finally the infection has cleared off. It was serratia species, whch at its worst may cause meningitis. Thanks to prayers from friends and family, we made it through.

He is in his second dose of Indomethacin today. According to the nurse in charge, he would be taking the drug for 6 days, then the PDA would be reviewed. Hopefully it will be closed by then and he wouldn't need a second round of Indomethacin. If he does, there will be a two-week break before they could restart.

Sometimes I feel like I am asking too much from God, but there's nothing else that I could do at this point.

On Wednesday, for the first time, I held my son in my arms. Two weeks after he was born...

There's no words to describe how I feel. I so wanted to kiss him but I was scared that I might cause him to have another infection, so I had to be content with just rocking him in my arms for about 15 seconds while the kind-hearted nurse cleaned his incubator. I was even afraid to talk, in case my breath carry germs...

Then last night the same nurse allowed me to hold him again...for about 10 seconds...but those were the best seconds of my life...

I still cry...but I'm taking this better now.

I want my son to recover soon, so he could come home and be with us...because I don't know how much time I have left...since little nodules have merrily emerged where my left breast used to be...and nausea a constant companion...

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 readers...do pray for us

Coping...

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.

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.

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...

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...