The way forward

This week was (and still is) a big week for Saskia. Last Monday she had an MRI scan, Tuesday a bone marrow biopsy and today she received a port line. To be under complete anesthetics for both operations is not an easy thing to do. The MRI scan did not reveal anything different and the initial result of the bone marrow biopsy shows no signs of neuroblastoma there. This is a huge relief as is means that the neuroblastoma is still only localised to several areas in her neck.
The oncologists remain however quite puzzled with the fact that her C2 verterbrae shows as neuroblastoma positive. In order for a tumor to become "boney", it usually travels quite a distant through the blood and settles at a distant part in the body. This one however showed up right next to the tumor, which is not just unusual, it is actually unheard off. The MRI scan combined with a PET scan next week may provide some insight into how it may have moved through the body, but all we care about is that it is not spread far. This is good news.
However, in order to treat Saskia, the oncologist (with her team here in Adelaide and backed up by a similar team in Sydney) has decided to treat her as if it was spread throughout the body. It is now the third time that it came back and it need to be treated as if it is the most severe form of neuroblastoma, even if it does not behave like this.
So the way forward is a 4 step approach:

1. Induction chemo treatment. This should kill off all neuroblastoma and will be administered in 6 cycles of 3-5 days each over a period of 5 months;
2. Surgery to remove the left-over tumor bits. The chemo may reduce the tumor and kill it off, but in order to be effective, all tumor bits need to be removed. So the surgery which was originally planned for this week, will still take place in similar format, but now after the chemo treatment;
3. Consolidation therapy. This a chemo treatment specifically targeting the bone marrow and will be administered over a period of one month;
4. Radiation therapy. In order to finish it off, the area where the original tumor started will be targeted with radiation therapy. This will be done over a period of approximately 3 weeks.

Marcel tried to make sense of it all and explained it in a relative easy to understand parable, which makes so much more sense:

• First we spray the weeds in the garden,
• Then we dig them out;
• We then spray the surrounding areas in the garden;
• Then we burn the original spot.

This whole process lasts approximately 7 months and will be followed by an additional 5-6 months of maintenance therapy.

At this stage the oncologist does not yet know which maintenance regime will have to be followed, but it relates to "teaching" Saskia's immune system to recognise neuroblastoma and to kill it off before it develops further.

If we compare the initial journey of 1,5 years ago (which seems like both yesterday and yesteryear), with this one, than this one will be much heavier on Saskia. The chemo will be longer and more intense. This ultimately means that her hospital visits will be more frequent and she will feel generally more sick.

She is currently in hospital recovering from her surgery; tomorrow she can come home and then on Friday 20 September she will be starting her new episode on this journey.


But as it was the first time round, she will not be travelling alone! Please do keep her and everybody travelling with her in your prayers.