Emily's Journey

Emily’s inpatient treatment is finally finished so no more hospital overnight stays for Emily! What a year she has had! So pleased to see the back of 2010. Here’s a recap of what Em went through from Nov 2009 until Jan 2011…

November 09 – Jan 2010 = 9 weeks of feeling unbelievably unwell with zero appetite, lethargy, and horrific bone pain that required Gary or myself to have to rub her wee body every hour during the night. Could only manage to move from the couch to her bed. Lost 4kg from her already slim frame. 3 hospital stays during this time to figure out what was wrong with Emily. Diagnosed with a virus that was masking the Neuroblastoma. We were so worried about her, and as awful as it sounds, Emily was literally dying before our eyes. Her complexion was grey and her eyes had no spark.. and we wanted that spark back… TODAY THE SPARK IS BACK!! : )

Jan 8th 2010 – After finding a mass in Em’s abdomen and a lump on her skull, a CT scan was performed and a biopsy of the lump/tumour took place.  Emily was diagnosed with Stage 4 Neuroblastoma and given a 20% chance of survival. The outlook was so poor due to her age and the fact that the cancer was widespread. The news was devastating and effected so many people… especially her Mum and Dad :(

• Jan 13th Em commenced her first round of chemotherapy. Emily’s bone pain was gone after round one. One saving grace.
• 8 more rounds of chemo.. every 10 days ( each round lasting 3 days). In hosp for a month following diagnosis. Had a tube inserted into her kidney as kidney was dilated from the pressure for the tumour.
• Countless temperatures between chemo rounds meaning back to the hospital she went… for IV antibiotics.
• So much vomiting I don’t even won’t to think about it.
• An infection in the bowel (typhlitis) as a result of the intense chemo (an 18 night hospital stay for that).
• Required naso-gastric feeding for 10 months due to loss of appetite/weight caused by the chemo.
• The psychological issues re losing her hair and not feeling “normal” or “pretty”.
• 6 bone marrow aspirations to check the amount of Neuroblastoma in the bone marrow
• 13 general anaesthetics, countless scans, xrays, tubes in her nose, blood tests, injections, painful dressing changes where her central intravenous line is on her chest.
• High Dose Chemo and a stem cell transplant (26 nights in hospital for that). Painful mucositis (Google it), morphine, morphine and more morphine.
• Surgery to remove her tumour and her left kidney (as the kidney’s blood supply was feeding the tumour). In HDU for 4 nights, then recovered in CHOC for another week.
• 14 rounds of radiation to the area where the tumour was removed.
• 5 rounds of painful antibody therapy
• 6 months of Accutane (a drug that helps prevent relapse). Em is on this until the end of Feb. Causes severe skin dryness and sensitivity.

We are so thankful for the amazing staff on the CHOC ward. Nurses, doctors, surgeons, play specialists, dieticians etc. An awesome collaboration of exceptional staff.  Emily has had top notch treatment and I can’t fault our health care system when it comes to receiving optimal care.

These are just the things I remember… I’m sure I’ve blocked some of it out… as has Emily.

Last week, Emily attended her first Camp Quality camp (a camp for children living with cancer).  She had the most amazing time!  Emily is now looking forward to starting school with the rest of her classmates on 2 February.

Emily you are amazing and have been through more than anybody should have to go through in any lifetime.  You are so brave and have taught so many people so much. You have earnt each and every one of your 831 beads of courage and we are all SO THANKFUL you are still here with us! :) I will update the blog after every scan.  Next one is in March, but other than that I won’t be writing about our ‘normal’ life – that’ll probably be on facebook :)

Thought I’d sign off with a story Em wrote on one of the days she got to school last year. We think the ‘cat’ is the ‘cancer’… you’ll know what I mean when you read it.  I’ll write it exactly as Emily did.

Once there lived a mouse and a cat. They were enames for a long time. One day insted of hurting each other they thought of killing each other. The mouse won. So the cat died so that was the end of the cat!

Thanks for all your support. Love to you all.

Kath, Gary and family x