Kahlan’s Story

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When Kahlan was a little over 6 months old we had just got home from a holiday to visit my parents. Within a week of being back home I noticed that a small lump had appeared on Kahlans back near the spine up near her shoulder blades. After a few days I took her to a doctor who after looking at her for just a minute gave me a referral for an ultrasound but told me I wouldn’t need it as it was just fluid or a bruise and would go away on its own within a couple of weeks. Just in case I booked the ultrasound anyway but could not get one for 25 days (26th August 2011). During this time Kahlan stopped using her legs so she wasn’t kicking in the bath and when I would put her on the floor she would just lay there and also during this time the lump was still growing. the ultrasound couldn’t show what it was just that it looked like it was in the muscle. At yet another doctors appointment after mentioning that Kahlans legs weren’t working the doctor said that she was just lazy and if it was to do with the lump the lump would be lower but he still referred me to a pediatrician in Bunbury for and MRI because he couldn’t tell what it was from the ultrasound.
On the 1st September 2011 at 7 and a half months old we travelled to Bunbury for the MRI and afterwards the paediatrician took me aside and said that she had a tumor and we would be flown to PMH that afternoon. On arrival a surgen looked at Kahlan and we were told that the tumor was too far advanced to consider surgery. Later that night my partner flew in from Esperance to be with us. The next day Kahlan had 6 procedures including biopsy, a pick line put in, CT etc. when we spoke to the oncologist she told us she thought it was neurobalstoma and went through everything that was coming up. That night Friday 2 September 2011 Kahlan started emergency chemo to stop the growth of the tumor. When the results from her tests came back we discovered that it wasn’t neuroblastoma but a rare teenage boys cancer called Ewings PNET (Primitive Neuroectodermal Tumor). We were told that the Cancer had grown inside the bones of her spine and pushed against and her spinal cord flattening it against the bone, hence the loss of use of her legs. At first because there is so little known about this cancer in children of her age radiation was not an option so we were told that if after the first 3months of chemo if the tumor didnt shrink enough then we would take her home. The team at PMH eventually found that if she didn’t have radiation that even if the chemo worked and got rid of it it would eventually come back and be practically untreatable so it was decided that she would have the radiation in Brisbane. Since then we have been on 5 different chemos in fortnightly rotations and had to travel to Brisbane for 30 rounds of Tomotherapy Radiation, have come back to Perth and are having still more chemo.
Thankfully at her 3 month scans it was discovered that the tumor had shrunk to 7mm by 10mm so Kahlan was responding really well and then 6 weeks post radiation MRI we have had the wonderful new that she is now cancer free. We still have to have chemo until September and then the monthly scans etc as well as extensive long term treatment with the spinal team in regards to her still not having use of her legs. From a tumor that was from her t2 to her t10 and had then cracked a vertebrae and grown into a golfball sized lump to nothing, I am so proud of my little girl. she has been so brave and happy though it all and I know she will be though all that is still to come.