Saskia's Journey Overview

In May 2011 we noticed a little lump on the left side of Saskia's neck. The lump was not painful and did not seem to cause her any issues, but we thought we better have it checked out. Melanie went with her to her GP who mentioned that it was most likely just a swollen gland which can happen in little children. Saskia was 9 and a bit at that time. So basically nothing to worry about.

However the lump did not disappear and showed signs of growth. Back to the GP it was who sent her for an ultrasound. By the end of May 2011 Saskia had an ultrasound and it was confirmed once again that it was a swollen gland or lymph node and not something we should worry about. The lump would disappear on its own.

And indeed we thought the lump reduced in size, so we did not think much about it anymore. We carried on with our lives as usual. We finally moved into our own home in Mount Barker, South Australia and Saskia and her siblings just started to feel comfortable at their new schools.

By the end of October 2011, Saskia mentioned that the lump had re-appeared and actually hurt a little bid. Not a lot, but enough to go back to the GP. This time the GP sent us to a specialist who, after a quick ultrasound, mentioned that it would be best to have a biopsy performed in order to determine exactly what this lumpy thing was.

The biopsy was performed on Friday 11 November 2011. The Monday thereafter we were informed that Saskia had Neuroblastoma Cancer and that further tests were required to determine the best approach for treatment.

After a variety of tests, Saskia's diagnoses was Low Risk Neuroblastoma Cancer and that an operation to remove the tumor would be sufficient to stop the cancer. The operation was carried out on 10 December 2011 whereby approximately 95% of the tumor was removed. The oncologist mentioned that this was sufficient and did not require any further treatment, but only monthly checks for monitoring purposes.

On Monday night 27 February 2012, Saskia felt some pain in her left shoulder and hardly could move her arm. Further tests showed that the Neuroblastoma had spread and another operation was required to remove the tumor. This time her diagnoses was Intermediate-Risk Neuroblastoma and would have to be treated with chemo after the operation.

The second operation was performed on 20 March 2012 and the first out of four sessions of chemo started on 5 April 2012. Saskia received her last chemo on 9 June 2012. After a variety of tests, Saskia was declared in remission on 28 June 2012.

Although there was still a little bit of tumor left in her neck, it was dead tumor and had no sign of any active Neuroblastoma. 

We thought that was the end of it and Saskia started to work very hard on her recovery. Every now and then she still had nightmares about the chemo and that it would return, but slowly, this episode was something from the past.

On Monday 20 August 2013, after nearly 14 months in remission, the nightmares of the past became the reality of today. A lump had re-appeared on the left side of her neck once again and after a series of tests it was confirmed to be Neuroblastoma. However this time around, the cancer also appeared in one of her vertebrae (no. 2). Although there was no evidence of widespread cancer, Saskia was still diagnosed with Stage 4 High Risk Neuroblastoma as this was the third time that the cancer appeared and showed some signs that it was spreading.

Saskia had her first lot of chemo (out of six) on Friday 20 September 2013. Between her first and second treatment, Saskia's stem cells were extracted from her blood to keep for future use. The last of these 6 treatments was completed on 13 March 2014. These six sessions of chemo (induction treatment) were followed with many scans, which showed that all of the cancer in her neck was dead or in-active, but that her vertebrae still had active cancer. A major operation to remove all of the dead bits as well as any lymph and gland nodes in her (left) neck followed on 15 April 2014, which also saw the removal of her left neck muscle. After her recovery, Saskia started her stem cell transplant. This started with 5 days (from 5 May 2014) of heavy dose of chemo therapy (consolidation therapy) in order to wipe out her immune system, followed by the actual transplant (on 12 May 2014) in order to kickstart the development of her new immune system. This was the most difficult part of her treatment and kept her in hospital for the longest period (she was only discharged on 26 May 2014).
After recovery she commenced on 10 June 2014 with 12 sessions of radiation therapy which was completed on 25 June 2014. This was followed by a range of test and Saskia was declared once again to be in remission. There was no evidence of disease (NED) left in her body.
Her final stage for treatment started on 18 August 2014 which is an antibody therapy. This is in Australia still in trial mode, but in America it has shown promising results for children treated for stage 4 High Risk Neuroblastoma. The antibody therapy will be 5 sessions of one week hospitalisation per month. Her last hospitalisation is planned for early December 2014, followed with one month of pills.
Saskia took her last treatment pill on 26 January 2015. This was followed by a range of tests (CT Scan, Bone Marrow Biopsy and an MIBG Scan). All scans showed that there is no sign of disease left.
From now on Saskia will have 6-weekly check-ups with the oncologist, she will receive once every 3 months an MRI scan and once every 6 months an MIBG scan. This will be continued for the next foreseeable future.