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.