An emotional week

And suddenly it really hit home. It will be a tough time ahead.

We have been relatively easy cruising after the first treatment. Saskia was sick for a couple of days, some hair loss, but nothing major. We all went out, saw some movies, went to the zoo; Saskia had sleep-overs and friends did stay over. Our lives continued as if nothing was changed.
But then last week all this changed, back into reality it was. The first signs were early in the week when Saskia's hair got really thin. Melanie managed to get it into one plat, but we knew that this would only last for one or two more days.

Our neighbour Gilly is a hairdresser and Saskia agreed to cut off the plat in whole now that it was still possible.

Then on Thursday she had to go for her second lot of chemo. Saskia was sooo not looking forward to this one as it was also the first day of school after the holidays. She was sooo looking forward to this day and then to have it ruined by this treatment was just not on.

I think it was one of her longest days so far. I went with her in the early morning to the hospital, while Melanie took care of the other three. Mel took over in hospital around 10am and was only home with Saskia at 9pm. Saskia was very tired, but felt reasonably ok. We expected one, maybe two days of Saskia being sick, but it lasted until today. She did not just feel sick, she did have and still has pain as well. The nurses warned us for this. The more advanced in the treatment, the less the body can actually cope and the longer it will last before Saskia will feel a bit better again. They advised us even to get a wheelchair as the walking would eventually be too painful and would be tiring her out.

Suddenly we realised that the following months will not be a period with just feeling a bit "off". It will be hard, both for her and the rest. Saskia's hair dropped off so suddenly on Friday that it all freaked us out. When she complained about the pain in her stomach and her legs, when she was emptying her stomach nearly every half hour and when she was crying that it all hurt soo much, then suddenly you realise that there is absolutely nothing that you can do, that there are no words of comfort to make it all easier. All you can do is hold her.

Pyrene and Arjen are still too young to really understand what is happening. That gives them the opportunity to be really honest in what they say and do without getting a rebuke. Pyrene made a while back a rap-song called "my sister has cancer, oh yeah", absolutely hilarious and we all just rolled on the floor laughing. And Arjen made us all cry with passion when he went to Saskia the other day with a mirror to show her how he saw her: really beautiful.
Marcel understands very well what is happening and he has his moments. He is lucky to have so many good friends who turn his attention to other important things like soccer. He is getting really good at it and was adamant that he needed to score a goal for Saskia. He did last Saturday!
Mel and I of course have our moments as well. We sometimes feel so lost and lonely. Although we do know that this cancer is treatable as the doctors keep reminding us, it is soooo not easy to see your own flesh and blood getting so sick from the medication that is supposed to safe her. Her body needs to be broken down, before it can be rebuild. And that is the hard part.

Yes, we do read the bible and yes we do pray and yes we are surrounded by fellow Christians, but that does not mean that it brings relief. We just have to accept and have faith and that is what we do.

Saskia has accepted only today that she is really sick. Only today she was able to smile again and only today she allowed me to post a photo of her bold head.

The first weeks

After the initial sickness and difficulties immediately following the first chemo sessions, Saskia had a reasonable good couple of weeks. It was the Easter holidays and she surely enjoyed herself with her friends and obviously ASLAN. Saskia named her cat after the mighty lion in Narnia.

She has been to hospital a couple of times to check her blood in order to see when the next chemo session can be done. At this stage it looks like Thursday 26 April. She had developed a bit of a nasty rash on her arm under the wrap which holds the PICC line in place, but other than an incredible itch, nothing to worry about. She gets tired very quickly and even before her head hits the pillow she is deep asleep.

Wherever Saskia goes she get a lot of looks due to her pink hair. Nearly everybody loves it (some unknowing adults frown upon it though).
Melanie will give it today an extra shot of colour to make it really bright and pink as this might be the last chance. Her hair is getting really thin at the moment and we think it would not last another week or so.
But until then let's enjoy the pinkiness of the hair and the smiles it brings on her and everybody's faces. WELL DONE SASKIA!

The first Chemo

It is not easy to anticipate what chemo therapy is doing to your body. People can say that you can feel sick, but they cannot really prepare you for the real deal.
Last Thursday Saskia got her PICC line, which was a bit of an experience. It was a bit like a scene from a science fiction movie. They brought this thin tube into Saskia's left upper arm and you could see on a screen how it went. Even Saskia thought it was awesome!
Thereafter a long wait before she actually got the chemo. During the administering, it was a bit boring according to Saskia. She couldn't feel a thing. But after this on the way home, she was exhausted and went straight to bed.
On Friday just before we reached church, she was very nausea and had to vomit. This remained like that for the rest of the day. poor girl, she was sooo sick, couldn't keep anything in her stomach. But no matter how sick she felt, she was determined to get her hair dyed pink. Our neighbour who is a hairdresser offered to dye Saskia's hair and she thought something like: "if I'm gonna loose it, I might as well do something crazy with it!"

During the whole process, she had to empty her stomach once or twice, but she did it!
And the result is fantastic. She looks stunningly awesome (even next to he mum, who usually takes all the credits...)

Straight after she was "pretty in pink", we went to the hospital for the second lot of chemo. Upon arrival, the nurses saw straight away that Saskia was not ok and advised that she had to stay the night in hospital. Not what we wanted, but certainly not unexpected. 

On Saturday, she felt much better, but also more tired. After the third lot of chemo, we could go home.

As a parent it is very difficult to see one of our kids go through soo much pain and trouble. You want to protect your child from everything that is bad in this world and you can arm yourself and your child against a lot of stuff. But you cannot prepare nor arm yourself against this. You feel so helpless and all you can do is take her in your arms and tell her that everything will be ok. No matter what people say about cancer, it is certainly humbling.

Trying on a wig

Today a day full of tests, but all done with ease. The kidney test was done in several intervals and in the in-between time Saskia went to look for a wig with one of her best friends Jamie Blades!
Obviously the girls had fun, but most importantly, Saskia was actually pretty pleased with what she could get.

The first one she tried was nearly as good as her own hair, but obviously not good enough.
"the colour was not the same, the length was not right, the fringe looks silly, I look stupid" were all of her arguments.

Obviously the girls could not stop giggling. But then she saw the redish one and Saskia thought that was awesome.

I think we can we can all agree that this red wig will suit her best. She is now a little more happy and sees the potential loss of her hair as another adventure.

The Real Deal

Alright then, the second operation was a success. All tumours were removed and around 18 glands of which 8 tested positive for Neuroblastoma. So the theory is that when part or most of the original active tumour was removed, this acted as a catalyst for tiny particles which had spread through the lymph system. These particles are so small that it could not be detected by all the tests which were performed.
So now that it has proven that Saskia's cancer is actually spreading throughout her body (although slow) it has been decided that she will have to go through 4 sessions of chemo therapy.
Tomorrow she will have a heart, kidney and hearing test done to do some baseline testing. These are the most likely areas which may get an adverse reaction to the chemo. (We did inform the doctor that Saskia has a selective hearing, so the hearing test might fail....)

On Thursday she will get a PICC in her arm. When I asked what PICC stands for, even the doctor had difficulty pronouncing it, so I will not even try to spell it. It is effectively a very thin flexible tube, which will be brought around 15cm into her upper arm into one of the larger veins. This will be her "port" for the administering of the drugs and she will keep this in her arm until all the treatment is over.
The first treatment session will start on Thursday, straight after she receives the port. She will get two different types of chemo. On Friday she will receive a second dose of one of the drugs and on Saturday the third dose. Saskia does not have to stay in hospital during these three days and can come home every night.
The second treatment session will be around three weeks after the first and so forth until four sessions have been completed.
One of the confirmed side effects of this treatment is the depletion of bone marrow. As the bone marrow is the blood-factory in the body, the follow-on treatments can only commence when the bone marrow functions normal again and makes sufficent levels of red/white blood cells. Usually the bone marrow is at its weakest 7-10 days after the chemo session. In order to speed up the recovery of bone marrow, Saskia need to get a special injection 24 hours after each session. So for the first session this will be Sunday.

Throughout all this period, Saskia has been very strong. She understands everything that is happening to her and is not afraid for the journey. The only time when she gets a bit down is when she realises she will lose her hair (this may happen within 3 weeks of the first session). But to compensate for all that, we gave her a little fur ball...

Easter has been a message of hope and salvation throughout the ages. The Christian symbol is a cross. And this cross is our strength and we pray that it is or becomes yours as well.