Wednesday, March 3, 2010

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.

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