Charlies Challenge. Fighting brain cancer for 4x. Now 8 years old.

Charlie had been sick for 6 to 8 weeks before the Dr's figured out what was wrong. She had high fevers and was fatigued but minimal reports of headaches or vomiting until the final days. Initially we had guessed it was a simple bug, linked in with starting kindy and being overwhelmed by the change. This led to us initially managing symptoms at home. 2 weeks later, the day after her birthday I took her to the Dr and they did a blood test. They measured her CRP – an inflammation marker which would normally be under 10. Hers was over 100. The Dr sent us to Whangarei hospital for diagnosis. This was our longest stint in hospital, 13 days. She endured scans, MRIs, 2x daily bloods, OBS, ultrasounds and physicals. They found nothing but originally felt it was “atypical Kawasaki”. This diagnosis later became “Systemic Juvenile Arthritis” and so they waited more time for final symptoms to present.

Over the period we were admitted into hospital on 4 separate occasions and I’m guessing now that over 10 to 20 different Drs missed this golf ball tumour in my tumours head.

Just after Xmas, we went back into Starship as on one occasion Charlotte starting screaming, this high pitched noise. It unnerved me and was the first time she was vocal about her pain. We estimated that she must have been suffering before but was disclosing it. We thought it better to go to Auckland hospital – The epicentre for children’s care, hoping that now something would be found. For the two weeks prior to Christmas she had been vomiting, but again this looked like a direct response to the steroids that they had given her intravenously over 3 days (as a generic response to her ongoing inflammation, that they hadn’t identified). We got to emergency department about 10 o’clock at night and they chose to do the MRI as a precaution on the head on the next day.

I remember them telling us. We had our whole family with us, and we had been waiting in another part of the hospital for her to wake from the MRI. The Drs struggled to locate us but then started to ring different places as if it was important to speak to us quickly. We were taken to site, and then suddenly there was about 5 Drs including the previous specialist we had dealt with, the surgeon, and another paediatrician. They pulled us into a room, all of them making eyes between themselves, probably wondering “where best to do this”. My 3 older kids were suddenly occupied by a junior dr. I asked them up front, what the bad news was. They told us.

In the movies, the women break down. The husbands get angry and storm out. We didn’t do that. We sat there and asked questions and I remember looking at my husband trying to process this, as if it wasn’t real. It was like an out of body experience. No emotion was felt and it was just confusing. I think the Drs wanted us to cry , telling us that we could and all that , but when you are faced with a wall of Drs , all staring you , analysing your body language and what feels like judging .You cant. You just want to gather your kids and go see your little one. You just want to go to another room and talk to your husband about what the hell you are going to do.

By Friday (the next day – December 30th) we were in 8 hr long, emergency surgery, being told that we would have lost her if we'd waited another week. The surgery went well, but seeing her after it, wrapped up, with cords everywhere and drugged, it was exceptionally confronting. You need to be strong for your kid but its graphic and ‘real’ and hard.

The pics show some of the images we faced. We were lucky in that she recouped well. Was conscious within suitable times, was communicative and angry but alive. Some kids/adults even would have been sedated to allow the brain to heal. Her progress and recovery was shocking and lucky. To some degree the speed of her surgery after diagnosis, the speed of her recovery gave us an illusion that it was all going to be ok, that she was well. We escaped the institution of hospital after 5 days.

The biopsy was sent and we went home. Results came in last Wednesday and as the title page says, the news was crap. This rare tumour whose previous prognosis is about 20 to 30 percent was what was causing my kids fevers. They couldn't explain the lack of symptoms. They advised us that radiation and chemo were key.

Next day was more surgery - her Hickman line was put into her upper chest, a tube which connects to an artery making it easier for medication to go in and bloods coming out. She had a lumbar puncture with Dr's looking for a secondary tumour site and a sample of her ovaries removed due to her loss of fertility which would occur following chemo.

This time in my life is one of the hardest, being in and out of hospital is stressful – the poor sleeps often caused by screaming sick babies, the lack of decent food or natural ‘personal space’, entertaining a 4 year old kid when tethered to lines, the separation from your whanau , in addition to the trauma that your child goes through with tests , and surgeries and pain. It’s one thing after another. It becomes a matter of survival , waiting until you are released like a criminal seeking redemption from jail. You just wonder when this journey will end and how. Chemo and Radiation is a long journey ahead and you wonder how strong you are to survive it , and how strong your little girl will now have to be.

PS the pics are a combo of pre sickness and post-surgery. Now this page is up I should be able to make them more logical.