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.

Quick update

Just a quick update on how the operation went.
The doctors were very happy with the operation. It took about 3 hours and they managed to get everything out (at least all that they could see). She did not have to stay on the intensive care and went straight to the ward.
At this moment she still has a drain in her neck and once that can be removed, Saskia can come home. We are hopefull that this will be tomorrow.
Today Pyrene, her little sister kept her company (together with Melanie of course), while the boys were at school. Once again we are surrounded by the helping hands from our friends taking some of the burdens from our shoulders.
By the end of the week we hope to hear more about the further treatment (length and intensity).
Meanwhile, Saskia has some "pappa time" at the hospital. Those hospital guest beds are ever so comfortable.......

Date for Operation

The date for the second operation has been set for Tuesday 20 March in the early morning. We anticipate only one night in hospital, but we'll see how.
During the operation, she will have all kinds of tests done: the bone marrow test to see for any evidence of neuroblastoma and a kidney and heart scan to see the status of these organs in light of the coming chemo therapy.
Well not much more to say other than that she is in God's hands and that we will be praying for her.
Please continue to do the same.

Last week's results

Since the previous posts, Saskia has done a multitude of tests (full body CT scan, Bone scan and MIBG). For what these test are all about, please read through the earlier blogs.
The CT scan showed that there are no other lumps in the body.
The bone scan showed potential affected areas in her right heel, which was a bit of a scare. But the MIBG showed that there are only three spots which were positive for Neuroblastoma.
So yes it is confirned that the Neuroblastoma has developed and spread, but at this stage it only shows at three locations.
There are a couple of other tests still to be done, but those will be performed during the operation. Those tests will confirm the severity of the cancer and will determine what dosis and for how long the chemo treatment will have to go for.
Last Wednesday Saskia saw the surgeon who will operate on her and she was really happy to see him again (NOT). He had some positive news as well. As the tumors are lower in the neck, the operation is not as difficult as the previous one. I won't say it is all in a days' work for him, but he was quite relaxed in the way he explained the operation.
Anyway no date for the operation has been set other than "as soon as possible", but it is likely to be either Friday 16 March or otherwise Tuesday 20 March.
Please do keep her in her prayers.

The message of a stranger

Last week friday, Melanie and Saskia were on their way to the hospital for the bone scan. On the way they stopped to buy some food and snacks. When Melanie wanted to pay for the items, which totalled about $19,- she could not find her card to pay and stepped out of the line to search for it. As we all know, women's handbags contain a heap of treasure and it does take a while to search through all that (..).
While she was searching through her bag a total stranger came up to her and asked if there was a problem, to which Melanie answered that she was just looking for some money.
Without saying a further word, the man walked to the counter, awaited his turn and paid the full amount. When walking out of the shop, he briefly stopped near Melanie, placed his hand on her shoulder and said: "everything will be ok". Thereafter he left. Just like that.

Now you have to imagine the situation. There was no need for the man to pay anything, as Melanie was not holding up the line. The man only paid for what Melanie bought. He had nothing for himself. Then he did not say that "all was paid", he said that "everything will be ok".
This encounter made both Saskia and Melanie her day. Both were relatively cheerfull (remember that we just heard the bad news once again and our spirits were not overly high).

To hear something like this is like a message from above: "hang in there guys, I'm still in control".

It ain't over till it's over....

Saskia has been feeling fantastic and has happily started year 5 at St. Mark's.
Last week she had to go for one of her regular CT scans and nothing suspicious was to be expected. The results of the scan were to be discussed today, but last Monday night, she woke up with a pain in her left shoulder. She could not move her arm and there was a relative large lump on her shoulder.
So the following morning an appointment was made at the Brookman ward at the Women's and Children hospital, were she was told that it seems that the neuroblastoma is back....
Immediately a full body CT scan was organised for today.
After today's scan, we had a long discussion with the treating doctor and we saw for ourselves what had happened. Even though all the tests performed last year showed that there was no cancer in the rest of her body, there are now 3 spots that are very suspicious and are most likely neuroblastoma.
To cut a long story short: Saskia will have to undergo the whole range of tests once again, followed by potentially an operation, but now most certainly followed by chemo therapy.
Tomorrow she will go for her bone scan and they try to organise the MIBG scan for next week. Once they have all the test results in, a decision will be made regarding the doses of chemo and whether an operation is needed or not.
"Shall we accept good and not trouble?"

Saskia's Birthday tomorrow

Well, as we mentioned in our previous blog, the journey is over and tomorrow we celebrate Saskia's 10th birthday. Although the journey is over, the reflections and images of what we've seen and experienced are definitely not over. It's like a travel album whereby we reached safely home and now trying to put together our travel pictures with relevant stories.
Looking back at that dreadful day in November 2011, we still do not know what really hit us. The forecast of this journey was to be a long one with heavy chemotherapy and doubtful results.

How do you respond to such news? How can we as Christians still claim that our God is great and good and loving and caring, while we are facing the possibility of loosing our child?

Many of you have asked us this question and some of you have mentioned that you were inspired by how we handled ourselves and the situation we were in. The bible has a book called Job and is about a very wealthy man who has everything he wants. All that he has is taken away from him, his farmlands are destroyed, his cattle and stock is either stolen or dead and all of his children die. In all that trouble he kept his faith, as he said: “Shall we accept good from God and not trouble?”.

However all the bad stuff had already happened to Job when he said it. He did not know what was to come, but when it came he accepted it.

We on the other hand were informed of the hardship that laid ahead. We were told that we will see our daughter suffer for a long period of time with a potential deadly result.

We did not understand what was happening and we absolutely hated the trouble that awaited us, but the same day that Saskia was diagnosed, we accepted the trouble from God in blind faith. There was not a moment of doubt in our minds and hearts that whatever the end result would be, it would be His way, that Saskia would be in His hands, even if He took her away from us.

I say blind faith, as that is what it is. We were totally blind for what was happening and we needed to be guided and carried. Since that total submission to God, we only received good news. All test showed positive in such way that it even astonished the doctors. After a successful operation and some further tests, the verdict is that she needs to be monitored over the next 10 years or so, but there is no need for any chemo.

What do we do with such message? It feels like we were held by our shoulders and given a good shake up as if to say: YOU SEE, YOU DO NOT HAVE TO WORRY, LOOK AT ME FIRST AND ALL WILL BE OK.

This sounds awfully similar to what Jesus Himself said:

“But seek first His Kingdom and His Righteousness and all these things will be given to you as well.”

And that’s exactly what we did and that’s exactly what we received.

I know that a lot of non-Christians are reading this blog and they might think that whatever happened was good luck, and I fully agree. It is just a matter of how one defines "luck".

For all of you who say that there is no God and that Jesus was just a good moral man, but are open-minded and willing to hear and explore some of the reasons why we believe that God is real, I suggest the following website: http://y-jesus.com/ 

For now, we are thankful for all the good that has come from our journey. We have come closer as a family and tomorrow we celebrate Saskia's 10th birthday: Happy Birthday Saskia!

The journey is over!

Well that's it. This weeks' scan showed that more than 80% has been removed and that the rest will just be monitored over the next 10 years or so. Saskia will have to go for regular check-ups once every 3 months, but that's nothing compared to what we were told initially.
Just over 6 weeks ago we got news that no parent want to receive and six weeks later we got the all clear. We still cannot grasp the magnitude of what actually happened but we thank our God that he provided us with the strength that we needed. Remember the poem "footprints in the sand"? He certainly carried us through these difficult times.

We thank you all so much for all of your support, your prayers, your hugs, your cards, your well wishes, your shoulders and just your "you". It is fantastic to see and feel that we were not alone in our struggle. Our blogs have been viewed well in excess of 2300 times from 17 countries all across the world, this in itself is truly amazing. We received well wishes from total strangers. We just cannot start to describe what this has meant for us.
We will post one more blog somewhere in the new year to try to put to words what pulled us through, so watch this space, but for now we wish you all a blessed 2012!!!

What a week!

After the operation, Saskia stayed for 1 day on intensive care, after which she was transferred to the normal day ward. She remained in a bit of pain, but that was to be expected. There was still a drain in her neck and doctors said that as soon as that one could be removed, she should be able to go home.
The doctor who assesses the follow on treatment after the operation came on Tuesday morning. She indicated that she was very happy with the result and the likelihood of need for chemo therapy has been reduced to nearly zero!!!
In order to confirm this result, Saskia will have to undergo one more test (a CT scan), which will be done on Wednesday 28th December. On Thursday 29th December we should know the outcome.
That same day (Tuesday) the drain was removed and she was ready to go home. Saskia remained having some pain and a sore neck, but as the week progressed all that faded away. Most likely as well because Saskia now understands that her journey with cancer is nearly over.
We will continue to update this blog until the final results on 29th December, but it seems that all the prayers has worked and her journey was a remarkable short one with a very happy ending.

The Operation

Well today was the day. We "checked in" at about 7am and and we both were able to follow her to the operating theatre untill she was in deep sleep by 09:15. As you can imagine we had some difficulty leaving her in the care of the doctors. The operation took up to five and a half hours, but the doctors declared it a complete success! They said that as far as they could see it, at least 95% of the tumour was removed. According to the doctors it was an operation in "tiger land", meaning that all the major arteries and nerves run through that area. Hence the long duration.
She is now on the intensive care unit and is still drifting in and out of pain, but expectations are that she can go tomorrow to the daycare recovery ward.
Thank you all so much once again for your continuous support and prayers. She has been and still is in God's hands and He has given us all the strength and encouragement to face this journey from the beginning.

Tomorrow is the day

Over the course of last week Saskia has been to hospital twice. Last Wednesday for a scan just to confirm that nothing unusual has happened and that everything is ready for tomorrow, and today to give a bit of 'emergency blood', just in case for tomorrow.
We are all very anxious and have full confidence that tomorrow's operation will be a success on all frontiers.
People from all over the world are praying for Saskia and her doctors and we just cannot describe what this does for our spirits. Thank you all so much once again.

Saskia feels soo much better and is soo much more confident about tomorrow. It is such a change with last week. She is a beautiful and courageous girl

Awaiting the operation

Well finally the date for the operation has been set: Saturday 10 December.
Saskia has been trying to go to school, but she starts to feel more and more uncomfortable with her neck. Last Tuesday we went back to the hospital, because her neck was constantly hurting and today she got an ultra sound to see if the tumour had changed since the last test. She got some pain killers prescribed and Saskia hopes she can go to school tomorrow.
Today Saskia followed Melanie and her grandparents to town for some Christmas shopping and what a surprise! She met up with Jaimee who handed her a bag full of cards and presents from her previous school Tyndale. This brightened her day and certainly made her forget the pain!
When she returned home, she got an extra surprise: another lot of angels from her present school was awaiting her there!
All those cards and angels will follow her to hospital, so when she awakes she will see all those well-wishes and prayers.

The Specialist

Today Saskia was seen by the head and neck specialist. He explained the results of the CT scan and clearly described what we saw on the pictures. He did not classify the operation as being great risk, but obviously he had to mention what could go wrong. We would like to forget about that!
However he has full confidence that the operation will be successful, which means that no chemo should be required thereafter.
This man also explained that this type of cancer is a weird one (if one can speak of weird for a cancer...). Usually with cancer tumours, all need to be removed in order to ensure that it will not return. However with neuroblastoma it is very well possible that any left over bits can turn in time into a benign tumour.
All in all, Saskia's diagnosis has improved greatly since last week, which we all are very thankful for.
We still do not know the date for the operation, but it will be "as soon as possible".

A day without tests

Today Saskia's grandparents from Singapore arrived! The whole family welcomed them at the airport. The rest of the day she stayed home and just relaxed. After such intense 10 days, she is just exhausted and today was a welcome rest.
Her class at St. Marks made another lot of angels, which she will take to the hospital for after the operation.
Tomorrow she will see the head and neck specialist and hopefully the date for the operations will then be set as well.

The final test

Today was the last test. Saskia had to lay very still for two hours while a special (nuclear) scan was made of her entire body. Luckily she could watch a movie ("Happy Feet") during the scan.

The initial scan results were the same as the others: no apparent signs of spreading through her body (hallelujah!).
The tumor in her neck has grown with two of its 'fingers' very close to the skull and as such it was decided that a head and neck surgeon (who is used to be fiddling in that area) will need to be present during the operation. 
Now that it is confirmed that there is no spreading throughout her body, the doctors will not perform any heroics in removing the tumor. They rather leave a bit behind, than to cause serious damage while removing. In case the bid that they leave behind is too large to leave untreated, she will still need chemo, but not as extreme as initially anticipated.
The operation will be performed in the next fortnight or so.

Very good news!

And today we were told that Saskia's tumour is not amplified, which means that the likelihood of her getting any chemo therapy is very small. Yippedaddodah! Thank God for that! The doctors speak of an extremely rare situation. They went back through their records and only about 10 years ago they came across a similar situation. So once again they apologised for the earlier given scenario, but they just could not envisage such rare development. We mentioned that this is proof that God still works with miracles.
We were informed that tomorrow afternoon most of the tumour would be removed and that Saskia has to stay in hospital for the remainder of the week. However on our way home, the surgeon who was suppose to operate tomorrow called us and said that the operation was cancelled. After careful study of the size, shape and location of the tumour, they decided that it would be wise to have a special head and neck cancer specialist perform the operation. When the operation will take place is still to be decided. Hopefully tomorrow we get a few more details as to the reasons of this last minute cancellation.
Today was also the first day of her last test of which tomorrow the final one will be held. This test should confirm all other tests and conclude that the tumour in her neck is the only one.

Feeling better

Saskia feels much better now. The fever is gone, her neck does not hurt so much and she is her usual bubbly self. The medication knocks her about a bit, so she did not go to school.

Tomorrow is a big day. We should hear about the amplification of the tumor. Please keep your prayers up that it is not amplified.

She will also go for her last test (the MIBG scan). This will go over 2 days and should provide clarity over where the neuroblastoma is in her body. It is a test specifically designed for Saskia's condition in her body and as such the test need to be designed to suit her.

We are absolutely thankful for all the support we receive from everybody around us. Our congregation in Campbelltown Christian Church is truly united; St Marks Lutheran school in Mount Barker provides top class support, our immediate friends (both close by and far away) take turns in looking after Marcel, Arjen and Pyrene, providing food and other every day necessities. The staff in the hospital is great. The understanding from my employer Maritime Constructions is fantastic. We even receive well wishes from total strangers as all of our friends post a link to this website on their Facebook page.

We feel humbled and blessed by such strong support. Thank you all and please continue to pray for Saskia.

Some encouraging news

Today Saskia felt much better and was allowed to go home. There is most likely an infection in or around the tumor, which should be able to be treated with antibiotics. Her neck is still very stiff and she keeps her head under a slight angle, but at least she is home!
Usually neuroblastoma develops in little children under the age of 5. When older children  (for example Saskia's age) are diagnosed with neuroblastoma, the cancer has usually developed when they were under 5 but remained undetected for a number of years. During these "silent years", the cancer could have spread throughout the body.
At this moment it looks like the cancer has not spread and it is only this localised tumour in her neck.
That the cancer is not spread within a 9-year old girl is extremely rare and a true Gods' miracle. It means that the chemo therapy does not have to be as extensive as earlier anticipated. However there is still one very important fact to be known and that is the so-called "n-myc amplification". The rate of amplification is an indication as to what extend the chemo needs to be given. We will know by Tuesday next week to what extend the tumour is amplified.
Please join us in our prayers that there is no amplification and that Saskia may avoid chemo at all!

A night at the hospital

Last night we had to go to the hospital as Saskia did not feel very well. She was admitted to the oncology ward at the Womens & Children Hospital. The tumor in her neck was realy hurting and she had a bit of a fever. It is always better to have that monitored at the hospital than from home.

In the morning the doctor came to tell some very good and encouraging news: the bone scan of yesterday was all clear! Thank God for that. The bone marrow scan was performed today as well.

Saskia still has to stay in hospital as she remains having a bit of a fever and her neck is realy stiff and hurts a lot.

Her class 4SM from St. Marks school in Mount Barker has made some wonderful cards with photo's of all her class mates whereby each of them has written a personal note. They had also made some little angels to remind her that God's angels are always watching over her. Well done for that class!

Later in the day our minister (Campbelltown Christian Reformed Church) came for a quick visit, as well as the Blades family who brought some cards and presents from Tyndale (her previous school). It's always good to see so much support. And last but not least, her good friend Jaymee came to see her for a while!

After all visitors were gone, we read through most of the comments on this blog. Reading all those comments brought a big smile on her face. It is truly heartwarming to see so much support from all over the world!

The first days - by Saskia

On friday my daddy brought me to the hospital where they put me to sleep with funny gas. The man said it smelled like purple but it was more chewing gum. When I woke up i was a bit dizzy and had a plaster on my neck.
On monday I went to my doctor who said I was going to have treatment for a year so I am not going to go to school for a long time. Then we went to central market and bought a few things. Then we went home. We had a few visitors then we went to McDonalds. I was so happy because I did not have McDonalds for 11 months!
On Tuesday we went back to the medical centre and I was very happy because my best friend Jaymee and her mum was there with me.
On wednesday we went again to the hospital and I got a line in my arm. I was scared that it would hurt, but it did not! I had to lay on a bed which went through a doughnut machine. Then we went to Oom Aad in the city and later I saw Santa Clause. Then we went to school to pick up Marcel and Arjen and I was so happy, because I saw all my friends at school.
Today we went to the hospital for some more tests. They took a lot of my blood and I had to lay on a bed again but now they strapped me in. They took pictures of my bones.

The Tests and some results

Saskia had done and has to do the following tests:

• Blood tests (08.11.11)
• Chest X-Ray (08.11.11)
• Biopsy (11.11.11) - under total anaesthetics
• Urine test and more blood tests (15.11.11)
• CT Scan (16.11.11)
• Kidney functionality test (GFR) and Bone Scan (17.11.11)
• Bone Marrow Test (BMB - 18.11.11) - under total anaesthetics
• Heart scan and hearing test (21.11.11)
• MIBG Scan (22 & 23.11.11)

The blood tests were all good, so the initial scare of potential leukaemia is over.

The chest X-ray revealed that there is a potential other growth on the right side of her lower neck.

The biopsy confirmed that the tumour was neuroblastoma cancer. A further test on the tissue taken during the biopsy will show the so-called "n-myc amplification". If the tumour is n-myc amplified, it means that it is more aggressive and requires full scale treatment. This result will be in next week.

The CT scan showed some positive signs: the shadow which was thought to be another growth as per the X-ray, are enlarged blood veins (due to the tumour on the other side). For the rest there are no signs that the cancer has spread to her abdomen, kidneys, heart or lungs.

The kidney test and bone scan was performed today and results will be later this week. All other scans are still to be done.

What is Neuroblastoma?

There are many websites, which explains what neuroblastoma is, but reading through all of them might be very confusing. Even the doctors who treat Saskia, say that this type of cancer can be a confusing cancer. Therefore Saskia will have to go through many test in order to determine the method of treatment.
The following description is from one of the largest online medical libraries, modified to suit our understanding from how it applies to Saskia:

Neuroblastoma is a malignant (cancerous) tumour which develops from nerve tissue. It occurs in infants and children and can occur in many areas of the body. Most neuroblastomas begin in the abdomen in the adrenal gland or next to the spinal cord, or in the chest. They may also start in other areas. In Saskia's case it started in the neck. Neuroblastomas can spread to the bones (face, skull, pelvis, shoulders, arms, and legs), bone marrow, liver, lymph nodes, skin, and around the eyes (orbits). In most patients, the neuroblastoma has already spread when it is first diagnosed.
The first visual sign of Saskia's tumour was back in May 2011. After an ultrasound, the prognosis was that it would disappear by itself. And although it did reduce in size, it never really disappeared. Late October 2011, the lump had grown and Saskia felt more uncomfortable. A specialist advised a chest X-ray which was done on 8 November, followed with a biopsy on 11 November. On 14 November it was clear that the lump would not disappear by itself and that it was neuroblastoma.

Knock Out

On 14 November 2011, we received news that no parent ever want to receive: Our daughter Saskia has been diagnosed with neuroblastoma cancer and will need extensive chemotherapy over the next year.
The immediate reaction is as usual a question: WHY? Why her? Why an innocent 9 year young girl? Why us? Why now?
Even as Christians we struggle with these questions and understandably so. But there is basically a very simple answer: Why not? Cancer does not distinguish between good or bad, young or old and it is not ethnically biased. It is as a matter of fact a very fair disease as it does not discriminate. 
Saskia will face an immeasurable challenge but she will not have to do that alone. We are certain that with our support and that of her family and friends, she will be able to walk this journey in comfort and in faith.
We have started this blog for her, for ourselves, our family and friends and for others in similar situations, to express our thoughts, feelings and actions in order to provide support and comfort during these times of trials.
We will try to provide regular updates of the procedures and treatments. Whenever possible, Saskia and her older brother Marcel will provide their thoughts and experience.
We encourage all who read this blog to post a comment or share their own experience in their journey with cancer.