Water water everywhere

I've been trying to feed Maeve water throughout the day (as she doesn't ask for it) and this involves following her around the house, surreptitiously pouring water into her mouth as she colours, watches videos, plays with her toys. This is absolutely essential as I need her to pee out all the chemo, and also to hydrate a very dehydrated body. So a couple of days ago, as I was trying to feed her water, she jerked away and of course, the inevitable happens. Water all over her. She looks at me purposefully for a long time, then says coolly.

"My heart tells me to beat you."
" So why don't you?"
"My head tells me you'll get angry and punish me"
"Hmm...so why are you listening to your head and not your heart?"
(long pause)
"I'm not stupid mummy"

Love it! I love that my little girl is growing up and able to think through her decisions and react after careful thinking. I must admit it's more than I can say for myself, sometimes!

Home at last

..and hopefully forever! We ended chemo yesterday with her final lumbar puncture. It was a strange feeling, almost surreal. Bern had packed the bags and put everything in the car and the room was empty, except for us three. I had envisioned this day a thousand times and each time, i imagine us celebrating, dancing about, laughing, cheering and shouting, "no more chemo!". the reality was rather different though and what struck me was the sheer silence of it all. We didn't exit with a bang but a whimper, so to speak. The nurses were busy in other rooms, so no congratulations, Maeve was teary after the removal of her central IV line, and Bern and I were just exhausted. So we hardly spoke to each other, just got the job done, said a few goodbyes and carried our precious little girl home. I'm still adjusting to the fact that there is no more chemo to do, and am suddenly feeling quite lost, rather than jubilated. I think that's how Maeve feels too as she wasn't particularly enthusiastic about being at home this time round. I think it hasn't hit home yet for us. And of course there's the fear of fever and readmission. Today she had her GCSF jab which she wasn't too pleased about, but i reminded her that other children have to have 10 jabs instead of 1, so please stop fussing. 10 jabs cost $300 but her 1 jab is a slow release one (so it spares her multiple jabs) and costs a fortune. $900 to be exact. Someone is sure laughing their way to the bank!

Am monitoring her temperature zealously once again as today, its already 37.8. Her counts will start to drop now and probably will be at its lowest over this weekend (ie. almost nil immunity), so please join me in praying for her protection from any viruses, germs, bacteria that will land her in hospital again. I don't know whether i should pack the hospital bag again (for practical reasons) or unpack everything and trust that she won't go back again. Some call this faith, others call it foolhardiness. So if anyone has a word from God about this, do tell.



As for my other little darling, she has decided to stand (at 7 months!) and hence even the cot isn't particularly safe anymore as she is trying to figure out how to climb out. We're trying to get her to practice her crawling but she'd rather practice walking. i guess some children just skip the whole crawling business altogether! She's overjoyed we're home and has been giggling and cackling the entire day, which is lovely. She still can't nurse so its still pumping full time for me. She has clearly forgotten as whenever I try to nurse her, she just sort of holds my breast like its some interesting artifact. she pokes a bit, prods a bit and takes a bit of a nibble! ah well, i guess i just have to leave it.

A cheerful heart is good medicine

Today is Day 3 of chemo round 4 and so far so good. Maeve's in good spirits and despite the awful middle of the night finger pricks, has been more or less very cheerful. I guess she knows that this is her last chemo and hopefully, the last time we need to stay in hospital. I am both happy and yet, scared as I know, the verdict will be out soon, when she does her Pet CT scan. Before that, we can just go into task mode, do the chemo round by round, but this time, after the chemo, about 2 weeks to a month later, we will find out if the chemo worked for her, if 100% of the cancer cells have been killed. 99% is not good enough as it means the chemo didn't work completely and she'll have to consider something else. Once again, we are staying at the BMT side, where 3 kids are currently undergoing bone marrow transplant. just the thought of it freaks me out but this is what happens to those who relapse. In faith, I will not even accept that as a possibility. I cannot. After this chemo, please really pray that she doesn't get a fever again. She's had a 3 out of 3 strikes so far, so I don't even know how to begin praying. It truely is russian roulette. Thankfully, each time, the antibiotics worked and she comes out of it fairly unscathed, but there are kids who don't and are in ICU fighting like mad. So each time there is a fever, we'll racing against time. Praying that her counts come back up fast enough to fight the infection before the infection wins. Till then, I'll always be a nervous wreck and I hate being in that position. I want her to go home after chemo and THAT"S IT. No creeping in at night with a fever, no countless hours begging God to make the antibiotics work, no knots in my tummy.

We will be in hospital till either Monday or Tuesday, so let me know if you intend to pop by. Maeve loves visitors and she has had only one so far, so she's been a little disappointed. It is the only thing she looks forward to each day. Without which, I occupy her with lots of videos and drawing and horsing around doing a one-man pantomime! We also need a cook for her for Monday evening as I don't want to tax my mother-in-law too much. If anyone is free to cook, or even not cook, but able to transport food, do let me know. We are praying in faith that someone will be available to help out for monday. A shameless appeal I know, but, a mum's got to do what a mum's got to do!

chemo round 4

Maeve's counts were very good yesterday, so as a treat, we took her out for lunch at Holland Village to celebrate her birthday. She was so excited as we've not been out at all, except to the hospital, since July. In fact, her counts were so high, they exceeded the normal range, so I guess plenty of people were praying for her! We start the 4th and final round of chemo on monday (if there is a room for us) and this round will last 8 days/nights. So once again, we ask for prayer support. This chemo protocol is quite "heaty" so it may result in a fever, mouth sores etc, so please pray specifically against it. She will also be doing 2 lumbar punctures as usual, and MTX (which means finger pricks every day as usual). Pray for courage, patience and a cheerful heart. If you'd like to visit and spend time, she'd like that, and once again, we'll probably need dinner cooks if anyone is available to do so. pls leave me an SMS or a message here on my blog if you are available. If you can come by and play for about 2 hrs or so, it'll be great, as it does get very lonely in hospital...and also because i can take a break to shower/pee/pump! Without another adult, I can't leave maeve to do anything, even use the toilet. so here's to the very last round, and prayerfully, no fever round after!

Baking Gingerbread on Maeve's birthday with Christabel Jie Jie!

Maeve really liked her baked goodies - she ate 5! she's also wearing Christabel's wedding ring =)

Mummy likes it too!

Maeve showing off her gingerbread creations!

Maeve is hard at work rolling out the dough! Happy Birthday sweetie!!!

Earlier pics

These pictures were taken from Part 2 of Maeve's birthday celebration when Aladin and Jasmine from 'Singapore Disneyland' came to visit!

Its good to be home! We brought the 2 girls downstairs to walk (we walk, they sit in stroller) around the neighbourhood with their lanterns last night. It was lovely, looking at the full moon, embracing the joy of being at home. i realise we've been very spoiled by our ability to get a single room most of the time. this time round, we didn't as the ward was at its maximum capacity, so we shared a room with 3 other kids (plus their caregivers). What was nice was being able to see other parents bustling around so we don't feel so lonely and isolated. However that obviously comes with its fair share of minuses, the top being the noise level. the little boy in the next bed (we are separated by a sliver of a curtain) cries all day and night (actually shrieks is more appropriate) and I'm thinking, he's either in a lot of pain, or a real drama king, or both. Turns out he's got real bad bum sores (the chemo can cause that because it can cause diarhoea) AND he's a drama king. So he screams when the nurse takes his temperature, screams when they take his BP, when his mother leaves the bedside, when another parent smiles at him...and here's parenting at its worse...his mother alternates between ignoring him (and hence allowing her son to disturb the other 3 kids throughout the night) and screaming back at him and/or smacking him. She could have just soothed him (why didn't she??) but didn't. So my poor feverish and very exhausted little girl couldn't sleep for 2 days and 2 nights, making her extremely irritable (well, make that, us). Despite that, when i complained how noisy the little boy was, Maeve admonished me, "don't say that mummy or you'll hurt his feelings". My little considerate angel. I guess being in a 4 bedder shows me how blessed we are, in that, while Maeve does get some side effects, its not that bad considering. the little boy had real bad bum sores, mouth sores etc.
So praise God for His protection, His provision and His grace towards Maeve. She's playing happily today and we're going to make some gingerbread cookies later!