check-up

Its been a month since our last check up, and things are almost back to normal. We thought each check up involved only her routine finger prick, but alas, now we know, it also involves the flushing of her port with heparin. So every month, the nurses will have to access the port to draw blood as well as flush it with heparin. Thankfully, she was busy playing with my i-phone, so that kept her distracted while the awful needle went in. Both Bern and I winced as it brought back reminders of her non-stop chemo sessions not too long ago. During the check-up with our oncologist, we were also told that we had to schedule her next Pet-CT scan in January. Of course I had to ask the question that had been on my mind--what is the percentage of relapse for Burkitt's? 5-10% we were told. That was supposed to give us comfort, but for some reason, it didn't. I guess what I wanted Prof Quah to say was, 5-10%, but we've never seen a relapse yet! Or something like that. But he didn't. He just informed us that if it were to come back, it would do so within the first two months. that was how aggressive Burkitt's is. We are past the 2 month mark and the next scan will really tell us what we need to know about the chance of relapse.

I had lunch with our case worker not too long ago and told her how I still can't sleep, still can't help worrying and being on high alert mode. She asked me how long I was going to be on this mode. 3 months? 1 year? 5 years? The truth is, once there is cancer, there is always the chance it might come back and I'm not sure I dare to let my guard down. The what-ifs are all too real. I know I have to release my little girl to God and release all my fears and let God be in control. right now, I'm not sure I know how to. Intellectually, yes. Emotionally? Am not so sure. its easy to sing a whole list of platitudes about trust, but the reality is not that simple, although you must give me full marks for trying! So it is a daily surrender that I have to do. A worry, a confession. A tear, a prayer. When I get that look, my little girl will tell me, "mummy, stop hyperventilating!" Indeed. My little girl, my rock.

Make-a-wish princess party

Maeve's no-more-chemo party sponsored by make-a-wish foundation! We had the time of our lives and Maeve was practically delirious after that. The ultimate fantasy party for a little princess!

Whilst out for a stroll one day, I turned the wrong way and ended up backtracking quite a bit with Maeve. She wasn't very impressed.

"Mummy, I've got lots of mean things to say in my mouth that want to come out"

"Such as?"

Deliberate pause.

" I can't tell you because it will break your heart. And I don't want to do that."

Then my little girl takes my hand and bends to pluck a grass flower for me.

It is these moments that make motherhood really worth it!

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!