Rainbow man

It was rainbow day at Tane's kinder today. So he dressed up in as many colours as possible, and wanted to take Carys's new hello kitty stuffed toy that Jum and Yume sent for her. To say that he's loving kinder here would be an understatement. He gets so excited about going, that he practically runs down the road dragging me along, and when he sees his friends going in the gates, he shouts at the top of his voice "HI CLASSMATES!!!! HIIIII!!!!!" His teacher Sue is thrilled to have him, and says he's doing really well- participating, making friends, exploring different activities...... I'm so glad that he's fitted in and adjusted so well, and just so happy here.

Carys had her weekly blood tests on tuesday, and she's neutropenic, which means that the white blood cells called neutrophils that fight bacterial infections, is very low. She has a bit of a runny nose, but otherwise is fine. We went to the Botanical Gardens yesterday for a picnic with Julie and her little boy Riley. Carys kept wriggling and screaming to get down and crawl around on the grass, and although I was a bit apprehensive, we let her get down and close to nature. It's hard to know what's the right thing to do, but I figure we can't keep her totally sterile! Her happy face and "ayyaa yaaa's" as she crawled around with the grass between her fingers, assured us that indeed, it was the right thing to do!

round two

Carys started her second round of chemo yesterday. This time, she had 3 different drugs administered through her central line, one after the other. Each one took an hour, then she had to have 3 hours of IV fluids. So all up, we were in the day oncology unit for the day and didn't have to stay overnight. When they hung the 3rd bag of drugs to her trolley, and I saw that it was a black bag, it made me want to cry. I had read on Adrian's blog http://adrianau.blogspot.com/ that the black bags of chemo drugs are the really strong ones. It was also red in colour, whilst all the other ones she's had so far have been clear. It was awful to watch the poison dripping into her, and worrying how her little body would take it. Throughout the day, she was happy to play with a succession of toys provided at the hospital, and watch the comings and goings of the other day onc patients. Tane and Ian also came in to visit in the afternoon, and Tane was very helpful with keeping Carys supplied with toys! The only thing different about her yesterday was her appetite. All she seemed to want to eat were hot cross buns! Luckily I had brought 2 with me!

Today Carys seemed fine, except for her eating. She threw up most of what she ate, though she did manage to eat and keep down a whole banana. In fact she screamed at Ian when he didn't spoon it to her fast enough! The hospital did give me some anti-nausea medicine, but when I tried to give it to her, the screams and tears seemed the greater of 2 evils. So unless the vomiting goes on for more than another day, I'm not going to try and force the medicine down her throat.

here we go

this morning was hard. Carys has started to lose her hair. Although it's to be expected, nothing can quite prepare you for the suddenness. I took Carys to her usual tuesday check up and as we got ready, I didn't notice anything different about her. It wasn't until we got to the hospital and I went to take her out of the car seat that I saw her t-shirt covered in hair, and little wisps caught between her fingers. As I began to cry for her lost hair that had just begun to curl at the back of her neck, she just looked at me with her smiley face. I could just imagine her saying, 'don't worry mummy, it will grow back. just be patient.' Perhaps as adults, we bring forth our own preconceptions and fears of cancer and cancer treatment. But to a baby or child, it's just the way things are. I could learn a lot from that. In fact, the kids in the oncology wards here and in HK are just amazing. I said to Ian that it's both heartbreaking and inspiring to see these kids. Heartbreaking to see their little bald heads and bags of chemo drugs on IV trolleys, but so very inspiring to see them playing, chattering away to each other, and just being normal kids. Their strength of spirit is impossible to describe. It goes beyond amazing.

Carys's doctor continued to be encouraged by her progress, and has scheduled the next round of chemo to start on monday 15th. This time, it will be 3 different drugs administered over the course of a day, so we don't have to stay overnight in the hospital.

On the bright side, Ian and Tane arrived tonight! It's soooooo good to be together as a family again. I can't believe how much Tane has grown both physically and emotionally. He's up to my chest in height!!

one day at a time

January 29, 2010. That day will always be etched in my memory as the day our world turned upside down. I took Carys to see her pediatrician for her 1 year check up. I told the dr that I had noticed a lump in her abdomen a couple of days ago that I had initially thought was just a hard poo. Since it was still in the same place, I asked him to take a look. As he pressed on her tummy, he mmm-ed and mmhhmmm-ed though his face remained neutral. He advised us to have an ultrasound straight away and called a friend just a few minutes away on Nathan rd. After we had the ultrasound, I read the radiologists report whilst walking back to the pediatrician's. "suspected neuroblastoma...." the report said. I had no idea what that was so did not allow myself to worry just yet. After the ped read the report he said it was serious and that we should go to Queen Mary hospital straight away. Neuroblastoma was a type of tumour, though no mention of the C word yet. In tears I called Ian to meet us at the hospital. It was there, in the waiting room that I called Chris to tell him where we were and to ask him what a neuroblastoma was. After a moments silence came the reply "oh man, that's cancer... " I felt my whole body go numb, then tingly as I had the sudden urge to throw up. Don't panic, don't panic I kept telling myself. It's just "suspected" Although we were admitted to the hospital, we were allowed home leave since Carys looked well, and they couldn't begin further testing anyway. After we got home that night, the tears came uncontrollably. The thought that we could lose our beautiful, sweet daughter was too much to bear. My little big man Tane, tried to comfort me, by saying "don't cry mummy, take deep breaths like this uhuuuuu" All I could do was hold him tight and try to take his advice.

The next day, we went back to Queen Mary, met the pediatric oncologist and began the testing. over the next few days tests would confirm that it was indeed neuroblastoma. During that time, I was in constant contact with Chris and mum, who were gently urging me to bring Carys back home to Melbourne for treatment. As Carys and I went back and forth between home and Queen Mary, I thought to myself that there's no way we can continue doing this for months on end. There were no support or facilities for parents/carers at the hospital. Not even a shower! Ian and I both felt overwhelmed by the prospect of having to manage on our own in HK. Once we made the decision that we would move back to Melbourne, it was like a huge weight had been lifted. During all of this, Chris has been hugely supportive in every respect. Talking to the drs in HK, lining up drs in Melbourne, helping us make sense of something so complicated when we are still in a state of shock, and just being my incredibly loving and caring big bro. Words cannot express how extremely grateful i am for my big brother, I would not be able to cope with this without him.

So one week after the first ultrasound, Carys and I arrived back in Melbourne, and a few days later, we saw Lisa, one of the ped oncologists at the Royal Children's hospital. The remaining tests were done in Melbourne, and the final diagnosis was stage 3 neuroblastoma, favourable histology. The treatment plan is 4 cycles of chemo then another CT scan to re-assess the tumour for surgery.

We have now had the first round of chemo and so far, Carys has tolerated it amazingly well. Throughout all of this, Carys is our inspiration and strength. She remains her sweet, smiley, courageous self. She is already winning the hearts of the hospital staff. Whilst we were there for the chemo, nurses kept popping in and saying " oh, so you're the cutie everyone's talkig about!" Lisa is very happy and encouraged by Carys's progress so far. She is positive for a good outcome, though I haven't asked her about percentages. Anything less than 100% full recovery is not good enough for me. I need to believe that Carys will make it through this and we will share all the joys and battles of a mother-daughter relationship for many years to come.