Don't they have enough of me yet?

Well that was it for radiation. Saskia has done amazingly well. She is not too tired, still jumps around and is overly happy that she completed this major milestone yesterday without too many difficulties. Her throat hearts a little and the skin of her neck is very dark, she is a little tired, but that's all there is to it. She felt so good, she even went to school today. Well done to her.

The next stage is a little unsure. What we do know is that she will have to undergo a range of scans and tests over the next couple of weeks to determine what the effect of the last part of her treatment has been. If these results fall in line with the expectation, which is no evidence of disease left, she will follow a maintenance treatment.
The standard maintenance treatment involves the usage of a form of vitamin A, which is designed to suppress the further development or growth of any cancer cell left in her body. As we know, even if the scans show that there is no further evidence of disease, this does not mean that it is not there. It just means that the particles are too small to be detected by modern technology.
This vitamin A treatment has been moderately successful. There have been many cases of relapse, despite this vitamin A treatment. There is a new treatment on the market, which in Australia is still under trial. During the trials in America it has shown great potential and a great jump in the rate of success. This is an antibody treatment, which in layman's terms is a form of immunisation.
A special designed antibody is injected into the patient. This antibody wraps itself around any left-over neuroblastoma cell and then signals the immune system to get rid of it. To boost the immune system, the patient will also receive a boost to grow more white blood cells and another boost to increase the working of those white blood cells. This whole treatment is done together with the vitamin A treatment.
The only issue is that this antibody does not just wrap itself around the neuroblastoma cells, it also wraps itself around the nerve tissue. And although it does not do any harm to that tissue, it does signal the brain that there is pain. Apparently so much that the patient need to be on constant pain relief during the treatment.
There are 6 treatments over 6 months. Each treatment is given in hospital and will take anywhere up to 10 days in hospital, while on morphine and other type of pain killers.
Saskia was obviously devastated to hear that she will still have to be in hospital for so long. She shouted out with big eyes and open hands: OOOHHH DON'T THEY HAVE ENOUGH OF ME YET?!!?
But she also knows very well that this is the only way to be relatively sure that the cancer will not return.

In case the scans show that there is still some cancer left, then she will still get the maintenance treatment, but then combined with potentially some radiation or an MIBG treatment. As you know one of the scans is an MIBG scan, which identifies neuroblastoma. The MIBG treatment means that a higher dosis of MIBG is given, which potentially kills off neuroblastoma.

However we do not want to think too far ahead. For now we will enjoy Saskia's relative good health and good spirits before we continue on this journey.

A Little Scared

Earlier in the day we saw Dr. Petra Ritchie, her oncologist, who is very happy with her development. Even her bloods seem to be doing very well. She only need to watch her weight a little as she dropped around 1kg, but other than that nothing major. Thereafter we went to the RAH for her first session of radiation.
Today was the set-up and creating a background x-ray, so it all took a little longer. Saskia was a little nervous and anxious to the point she nearly had to vomit because of a strange smell in the hallway of the hospital. In the end the smell turned out to be the smell of soup.... When she new where this smell originated from, she felt much better and a little silly as well.

We went into the treatment room and saw this massive machine which could have been used in any science fiction movie.
Computer screens, cameras and digital bleeps everywhere. The radiologists were very friendly and helpful, which calmed Saskia down a little, but not too much. She had to lay down so that her pre-measured mask could be fitted and marked out correctly.
Saskia became a little claustrophobic and asked if some adjustments could be made to the mask, which was possible.
Then came the moment to say goodbye.

I was not allowed to stay with her, but I could watch her via the camera's and talk to her as well through a microphone. When I left her there my heart sank a little in my chest and it dropped a little further when I saw her on the screens. Imagine a very still body with a mask completely covering the face. The realisation that it was my own daughter laying there was a little harder to witness than I could have prepared for. But then I realised quickly that it would be much scarier for her, being all alone, than for me, so I grabbed the microphone and spoke to her. She later told me that she really was scared and nearly started to cry, but then she heard my voice and knew that everything was right.

First a couple of X-ray's were made and then the radiation started. There were about 5 or 6 sessions from different angles and each session lasted less than a minute. Saskia later described it as not painful at all, but more of a warm feeling, like someone putting their warm hands around her neck.

All-in-all not too bad. We have now some moisterising cream to keep her neck area moist and hydrated, as radiation treatment has a similar effect on the skin as being sunburnt, but for now that is all we have to worry about. This will now be a daily excersize for the next 2½ weeks, thereafter a variety of scans to see the results. If all is well,she should only have to have further maintenance treatment.  

Radiation

One of the last steps in this journey will start tomorrow. Saskia had a meeting with the radiologist more than a week ago, where the whole procedure was explained. For the next 2-3 weeks, Saskia will have to be in hospital on a daily basis (except weekends). This will be done in the Royal Adelaide Hospital as there is no such machine in the Women's and Children.
A special mask for her was made so that her head and neck will always be in the same position when she receives the radiation. She was explained that she should not feel anything and there is no such thing as feeling unwell. It will take however a lot of energy out of her, especially after the second week, but other than that, it should not be such a big ordeal.
Saskia herself is getting much better now. She is eating a lot more and re-gaining her strength. We had to get her a wheelchair as walking any longer than a minute or two was too much. She does however take the dogs for small walks again which is fantastic.
She feels quite anxious about the next couple of weeks, which is quite understandable. She is sooooo over it all (aren't we all?), but she also knows that she has nearly reached the end of this horrible ordeal.
Lets hope and pray that this time she has beaten it for good. Please keep her in your prayers when she starts the next stage.