The New Normal

These few days have been extremely blissful. We've been to the airport (we skip/hop from end to end--only on the black tiles as apparently if you step on the white ones you fall right through according to her royal highness, and that makes for a very tired mummy, hopping at my age is hazardous!), climbed the treehouse at VJC (and picked flowers there as well), had a lovely manicure/pedicure session courtesy of Vanessa, and ran through the sprinklers about a million times at the zoo. My little girl has now gotten back her rosy cheeks, her energy and I'm ashamed to admit, I teared when I watched her run and burst into fits of giggles (her, I mean, not me). It wasn't too long ago when I carried an almost colourless, battle-beaten little girl out of the hospital, princess plasters stuck all over her little body. "tears of joy mummy?" she asks me as she plops down beside me and leans over to plant a wet kiss on my cheek. "yes, sweetheart, I'm so glad there's no more chemo and no more cancer", "and i can eat yoghurt now!" said the gleeful one, her priorities obviously different.

So now, we're going to do all the things I've promised her we will do once she's well, and she has been extremely patient. People tell me I shouldn't bring her swimming, the zoo, let her run around so much, but hey, she missed out those few months of doing precisely those things and a child has to do what a child should do. Tonight she is staying at her cousin's and I'm a little nervous, given she's never stayed away from me before, and of course, I worry that she falls when I'm not looking, but I have to learn to let go and trust that she'll have a great time and she'll be fine.

Pet Scan results

...and the results are....100% in the clear! There is not a trace of cancer left in Maeve's body, and she is definitely, irrevocably, without a doubt, cured!!

On friday, the nurse who accompanied us to the radiology department and stayed with us throughout, coincidentally, had recovered from lymphoma as well, and has hit, the 5 year mark, where she is considered, a cancer-surviver. I took that as a sign, even before Maeve did her scan, that Maeve has already been cured. There have been other hints as well, such as when I hopped to my usual bookstore and chatted with the owner (who sported a shaven head), who told me that his little girl (now 19) had cancer at age 4 and, well, obviously, has been cured completely. I know I can't quite pop the champagne yet till she is declared completely in remission (after 1/2 year to 1 year of no relapse), I know in my heart that our battle is truely over. Looking at her, with the exception of a bald head, you wouldn't have a clue what she had been through the past few months. She's happy, giggly, sports rosy lips and has the sort of energy only 4 year olds can muster.

We're taking this time now to take stock of our lives and think about what we've learnt from the whole experience, what we should do differently, what new direction we should take. If we don't do something different, the whole experience of almost losing our little girl, would have been in vain. God wants to tell us something. I guess its up to us to figure out what. One thing I know for sure, I'm going to let my little girl enjoy her childhood and forget about angsting about her being monolingual or being unable to spell anything other then words like princess, love, castle and once upon a time! School can wait. Jobs can wait. Childhood cannot. Life cannot.

Pet Scan

We're on our way to hospital now to prepare for Maeve's Pet Scan tomorrow morning. We have been told that its dangerous assessing her port as it can cause port complications (and there'll be no one in the scan machine with her), so it'll have to be the hand plug. :( Given that she says the pain factor for that is 12/10, we are going to have to really prepare her mentally for it tonight. Pray that she will be brave for this last thing, and pray, most of all, that the results will show a 100% all clear. I'm beside myself with nerves but I know God is in control, today, tomorrow and for all her tomorrows.

Thanks all for praying for Maeve's platelet counts. It went up quite a lot so no transfusion needed today. hurray! she still has her bruises but they will heal once her counts go back to normal, which is soon i think. We'll check again on friday. If counts are good, I'll take her out to lunch to celebrate! We've arranged for her PET Scan to take place next friday, so we'll stay overnight on thursday. The only problem with this scan is they have to put a plug in her hand (which hurts and she hates) as the nurses in the radiology dept are not allowed to access the port (only oncology nurses can do that). So am trying to figure out a way to tell her that. They need to sedate her and put in the radioactive contrast so that tumour markers (if any) will show up. We trust that God has already healed her and that she is cancer-free.

The best news is by next week she can go back to church if she is ready. Not sure how she'll feel about her lack of hair, but we'll cross that bridge when we come to it. Hopefully, no stares but lots of smiles!

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!