Merry Christmas

Since our last post, Ssakia has still not received her fourth treatment. The platelet count did not show any improvement. This means that her bone marrow is still recovering from the previous session. Saskia went for a bone marrow biopsy last week, which showed that her bone marrow is doing everything right, except making sufficient platelets.
The decision has now been made that irrespective of the platelet count, she will receive her fourth chemo session on Friday 27 December until Sunday 29 Decmber. The doses will be reduced and in case her bone marrow does not show any signs of improvement thereafter, she will receive a stem cell transfusion.
All-in-all relative good news as this means that Saskia feels really great for Christmas and can enjoy every moment of it. Also, because the coming session is a reduced dose, she should not feel too sick in the period thereafter and can then also enjoy the New Year party.

From our side, we wish you a Merry Christmas and we pray that you all will remember why we celebrate Christmas in the first place!

A Balancing Act

Since we heard that Saskia's cancer had relapsed, we all had some difficulty focusing on what matters in life. During her previous ordeal back in 2012, we managed to continue living our lives in more or less the same rhythm as before. After the initial shock, we managed to focus and continue the usual daily tasks of work, school, shopping, cooking, church, friends, etc. Our friends were instrumental during that stage and we are forever grateful for their help and understanding.
This time around, it seems different. The ordeal is the same, the friends are the same (and some great new ones too!), although we moved churches, the church is the same, we still do all of the daily choirs, but for some reason this time around it "feels" different. The chemo treatments are more severe, the hospital visits are more frequent, the recovery from the chemo treatments take longer than expected and any and every activity that we have planned had to be changed around to suit Saskia's treatment. Our lives are truly upside down at the moment.
We face some major challenges of which caring for Saskia is only one. We have three other children who all need to have an as  'normal-as-possible' life. And although we try to make part of their lives 'cancer-free', it is near to impossible. It does not matter what we do, the big C is always front of mind.
At Marcel's school they have this great program for year 9: The Journey. With this program they teach 15 year old kids how to deal with this fast paced world and form meaningful relationships. The program is concluded with a graduation and a personalised speech. When it was Marcel's turn to have his speech in front of all his journey-lads and their parents, it became very quiet. Although Marcel and us speak open and a lot about Saskia and her ordeal, his speech made us realise that his journey was (and is) a tough one as well. He could hardly say his words, but at the end he got a well deserved long lasting applause from everybody and a group hug from his lads.
When Arjen had to go to hospital for some check-up for some pain he has had for a while, he was worried that it was the same as Saskia. And when we wanted to drop Pyrene off at Calisthenics, which she usually does with Saskia, Pyrene did not want to go as she missed her big sister so much.
It is not just our children that have to cope with cancer, equally so the adults in our clan.
Melanie, Shaun and myself have been preparing for opening a restaurant, which would provide an income-opportunity for my in-laws for when they receive their PR status (hopefully early next year). After investing many a dollar and lots of hours, just before opening this place, we found out that Saskia's cancer had relapsed.
For obvious reasons, we could just not open on the planned date. The restaurant was least of our worries. If we could have known, we would never have started this place.
And then on top of all this, due to a small judgement error, Shaun had to leave the country early September for visa reasons and we are still awaiting his return (hopefully next week, to commence a new study early next year).
Our lives were totally turned upside down and there seemed no easy way out. As it turns out, with childhood cancer (as with many other life threatening circumstances), there is no easy way out. But there is a way out. As Christians we have our hope not in this world, but in Christ. To be a follower of Christ does not mean that we just follow certain principles and have a certain lifestyle - many non-Christians have similar principles and lifestyles - it means that we know that life on this earth is only temporary and that the life hereafter is without pain and suffering. Before I became a true follower of Christ I always thought that this statement was an easy way out - a cheap pep-talk to provide the individual with some hope. But through Saskia's ordeal, her and our journey, I became to know the true meaning of this. I started to question the existence of God - so I researched his existence and was proven beyond doubt that God does exist (I highly recommend "I don't have enough faith to be an atheist"). But although I now knew beyond reasonable doubt that God existed (as I do not have enough faith to be an atheist), I still struggled to understand why He allowed a little girl to have cancer. And although I still struggle with that question, the book Disappointment with God by Phillip Yancey helped me to deal with that question. However, to gain a little understanding of Gods' plan does not make this life any easier, it just makes it more acceptable.
Things have fallen a little into place though. My company Maritime Constructions initially allowed me to take all of my balance leave in one hit, which took me to the end of October. But as I was not able to get back to work (my mind was just not ready for it), they allowed me to take as long as I needed with the promise that my job would still be there upon my return. This is amazing and shows the Christian principles on which this company is build upon. It was the best that could happen to us as it allowed me to spend valuable time with my family and help in starting up our restaurant (it opened 20 November).

Friends of us have shown their great support in shaving off hair; running for hope in Singapore; organising a family fun day (a fundraiser of which the funds will be equally distributed between Little Heroes Foundation and Saskia - funds we will set aside for a trip away when Saskia's health allows); our restaurant is frequently visited by people who just want to support us (and also for the food we hope...) and the continuous support from our loyal friends, church and colleagues, with offers to help out with anything is just amazing.
Our life is still a big balancing act to try to cater for everyone's needs, but as we are comforted by the great support of a warm and caring community surrounding us, we know that we can do this.

Meanwhile, Saskia has still not completely recovered from the previous chemo session (her blood platelets still do not have the required count to start the next session). This meant that she could go to her year 6 graduation night as well as shave off Krista Hodgson's hair during Chilli Hair Shaves for Saskia Family Fun Day last Sunday, which was a great event and indeed did put a smile not only on Saskia's face but to all of our faces!
Today we heard once again that her platelet count is still not right, so we do not know exactly when the next session will begin.
Lets hope and pray that she feels ok for Christmas.

Selective Hearing

Today Saskia had to have several check-ups and tests done to see if the chemo sessions had any negative effects on the overall functioning of several vital organs. The first was her heart - all clear.
The second was her hearing. This one had some issues. Apparently the higher frequency sounds are not so clear for her anymore. In order for her to hear these frequencies, they need to be louder. One of the potential side effects of one of the chemo drugs is (partial) loss of hearing, which is irreversible. Saskia need to have one more session with this type of chemo, which means that hearing loss may get worse. The oncologist has mentioned that they will do everything possible to reduce the doses, but the main concern is to rid the body of the cancer and if that comes with some loss of hearing, that this is a relative small price to pay. At least it confirms that Saskia has selective hearing....

The blood test of today showed that she was very low on blood platelets, so she had to have a platelet transfusion. All-in-all a busy day for Saskia with not too much good news. Once she heard that she needed a platelet transfusion, she got all upset and did not want to speak with anybody. And that's when Captain Starlight steps in. Captain Starlight's sole purpose is to bring smiles to sick children by distracting them from their illness. And the team at the Women's and Children Hospital in Adelaide is absolutely great at it. It didn't last too long before Saskia could smile again and was her usual bubbly self.

Straight after the platelet transfusion, Saskia went with her Nana into town to have a little bit of "nana time" and managed to get a huge appetite. Although she did manage to keep her food in during the last couple of days, she never ate a lot. But that all changed today. Finally her appetite is back.
Next week Tuesday she will have another blood test and if all is well, she will start her fourth round of chemo then as well. This will be given over three days with two over-night stays. Please keep her and our family in your prayers.

Stomach says "no...."

Wow. What a week. After Saskia came home on Monday 11 November, feeling very weak, she was re-admitted in hospital on Tuesday 12 November. The chemo had such a bad influence on her stomach, that she just couldn't keep anything in. Saskia tried her hardest, but nothing could stay down for much longer than 1 hour.
Her last real meal was on the wednesday before she started her chemo, so after 6 days of no food, you can imagine how weak she felt.
There was not a single drug, which could settle that stomach. On Friday 15 November (9 days without food), the doctors even mentioned that if this would continue for a few more days, she may have to be fed intravenously. But even that would have doubtful results as the food still has to go through the stomach.
But then suddenly, on Friday night after a small meal, she managed to keep it in and slept the whole night through. In the morning she took a little bid of breakfast and that stayed in as well! Fantastic news, so she was allowed home and although Saskia is still very weak as she lost about 3kg, she is home and relative healthy, but in real good fighting spirits.

Meanwhile, her supporters group is growing by the minute. There will be a family fun day at Mount Barker organised by our friend Krista Hodgson and owner of "Chilli Hair". She and her friend Alice Hilam have set up a fund raiser to go bald for Saskia and raise some money for a good cause. Check out their Facebook page "Chilli Hair shave for Saskia". My ex-colleague and friend Ard van der Heide ran with his family 10km for Saskia in Singapore during the "Run for Hope 2013" event. There are many others, friends, family and total strangers who help out in our daily lives as well as the start of our restaurant.
Seeing all these people work hard for Saskia is a humbling experience and certainly encourages Saskia to continue her fight in great confidence. She has to be back in hospital next Thursday for a check up and then it should be another week or so before the next round of chemo.

Third Chemo Session Done!

Although the exclamation mark behind the title is meant to visualise some sort of celebration, it also means that this one was a tough one.
Luckily, Saskia had a few more days to enjoy her relative health as the PET scan could only be done last Wednesday, while her chemo was suppose to start again on Monday 4 November. However, in order to get a reliable PET scan, it can only be done when the body is not under the influence of any chemo. So her chemo was delayed with three days, which meant that she could go to school and have an "all girls out evening".
On Tuesday she went with Melanie, her Nana and two very good friend to the movies. It is great to see Saskia in such good spirits, she is so comfortable with her baldness, that even in full view of everybody in the restaurant, she just takes her hoodie off and totally looks relaxed.

She also has a good doses of self humour. The day after Halloween, she woke up, took a "selfie" and posted this on instagram "waking up with a bad hair day....". Her attitude has changed so much over the last couple of weeks and she takes this journey in comfort.
Not that there are no times of discomfort, but she is comfortable with the fight if that makes sense.

Last Thursday she went in for her third chemo session. This time she had to be admitted to hospital, as the drugs she was to receive had to be flushed out on a continuous basis. This drug was quite a nasty one and made her feel really sick from the moment she received it. Although we were allowed to go home late Monday afternoon, she is still very weak and can hardly eat or drink anything. We hope and pray that she will be able to get something in her stomach soon, otherwise we will end up in hospital within the next couple of days.
The hospital visits for chemo treatment seem to be the wrong way around: you get in when you are in relative good health and get out feeling really, really sick.
Please keep carrying her in your prayers.

Back to Sports and School

Last week Thursday Saskia had to have her bloods checked and it showed that there was not much substance to it. A blood and platelet transfusion was organised for Friday 25 October, but she developed a fever on the Thursday evening, so back to hospital it was. The usual procedure is that you need to be fever-free for 48 hours and on antibiotics for at least an additional 24 hours. Luckily we managed to bring the fever down quite quickly and were able to go home on Saturday afternoon with a bag full of drugs.
The real issue with the chemo treatment is not that you feel very sick during the actual administering, but the ability to fight any infection is reduced to nearly nothing in the 10-14 days following the treatment.
To have a fever does not sound as bad, but for persons being treated for cancer, it is actually pretty bad news and if not treated immediately can potentially have a deadly result.  Healthy persons get infected all the time without the person actually knowing it. The body's immune system is usually taking care of all that without noticeable signs. But when your body has received a large amount of poison, the ability for the body to make healthy blood (through the bone-marrow) is next to nothing. This means that any infection, no matter how small, cannot be fought, which causes a fever and back to hospital for treatment it is.
But this week was an awesome week for Saskia. Yesterday (Wednesday) she managed to go a whole day to school and did one-and-a-half hours of calisthenics. She felt absolutely great. Today she is back in hospital for some further blood checks, but it seems that her body has produced the healthy blood stuff, so we do not believe that there is any need for additional transfusions.
Tonight we'll all dress-up for trick-or-treating and I am sure Saskia and her siblings will have a ball of a time.
Next week wednesday she will have a PET scan (which was postponed last time), followed by a 5-day intensive chemo treatment. With this treatment, she has to stay in hospital as the chemo need to be administered with 24hrs per day of liquids as well.
Please do keep Saskia and us in your prayers.

Moving on ... Feeling Blessed

Saskia started her second round of chemo last week Monday (14 October). She had to be in hospital every day for 5 days. Each day was a long day, leaving our home at 7am and only back by about 4pm. She had to be on fluids for 2 hours before the chemo session of one-and-a-half hours, followed by another two hours of fluids. Although she felt very nausea throughout the week, she managed to go home every day, which was fantastic! Even though she could hardly bear the thought of food, she actually managed to eat and drink every day.

Meanwhile she has decided that she is better off without hair. She woke up every morning with large plugs of hair just scattered around her bed and pillow which made her realise every time that she was ill. Better to have it off! her little brother Arjen of 8 years said without hesitation that he wanted to do the same, so his hair went off as well. Marcel her older brother of 15 could obviously not stay behind and decided together with our friend Luke Jones to go bald as well. Grandpa and myself had done it already a little earlier. Saskia had great fun shaving all these heads.

At the end of her chemo session last week, the weather was so good and Saskia felt really fantastic, so we organised a big bonfire for last Saturday. It was great to see all of our kids enjoy themselves so much with each other and their friends. It is moments like these that make us feel blessed and humbled by all that is happening. It is in moments like these that we feel comforted by Christ and His promise, and it is these type of moments that we will have to look back upon and remember in times of difficulty, which we know will surely come as well.



Little Sebastian, Saskia's miniature pony has received some company. We are now the proud owners of two little sheep as well. These sheep were donated by the home-groups of our church (Trinity Mount Barker). They are approximately 4-5 months old and are very tame. They came from the Hahndorf Farnbarn and have been bottle-fed for all of their short lives. We still bottle-feed them for a little longer, although this is not really needed, but it is great fun for the kids. Our youngest daughter Pyrene had the honour of naming them and now we have "Shaun" and "Fluffy". We had to promise that we do not eat them over Christmas....
Meanwhile Saskia is feeling relative good, still easily tired and she sleeps like a log, but at least she is home, strengthening herself for the next round in approximately two weeks.

A body in pain

Since last post, Saskia has hardly been out of hospital. After she was finally able to get home, she was so weak and couldn't fight a simple infection as a common cold. Monday 30 September she was admited again into hospital with a high fever. Although the fever went down gradually, the oxygen levels in her blood were very low, so she had to be frequently on aditional oxygen supply. For Saskia there was nothing worse which could happen to her: being confined to a small hospital room during the school holidays. And although we can try to entertain her with movies, games, books, karaoke, etc, if you're not allowed to leave the hospital, everything just looks grim. But we are so proud of her as she was never realy too upset for too long. She always managed to pick herself up and do something to entertain herself.
Last monday (7 October) we got the good news that she was all clear to go home, but......there was still the stemcell harvesting to be done. The 7th chemo treatment will be a treatment targeting her bonemarrow and as a result will wipe it out. Without bone marrow, the body is unable to make blood. In order to overcome this, doctors can now extract so-called stem cells from the blood, keep it in the fridge and re-inject it when the body needs it. The best time to take these stem cells, is from blood which is newly created by the bone marrow, which is usually 2 weeks after the initial chemo treatment.
Saskia was allowed home on Monday and had to be back on Tuesday early morning for an operation to receive another line. The portline which she has is not large enough to extract blood in a continuous flow and as such a line is inserted in one of the larger veins in her right leg. The lines are then connected to this hi-tech centrifugal machine. The blood now flows through this machine, the stemcells are being extracted and the rest of the blood is pumped back into the body. This procedure took about 4 hours and with a little bit of luck, there are sufficient quantities of stem cells extracted so that Saskia does not have to do it again today.
This all sounds realy simple and relative easy, were it not that our own child is actually connected to three or four machines, with tubes, wires and electrodes connected to every part of her young body, with tears in her eyes and crying that it all hurts so much. It is one of the most devastating scenes which we can face as parents and one that we cannot prepare for. We can talk about physical and emotional pain, we can try to prepare for how we will react to it and we can try to find meaning in it. But when it actually happens it exceeds all expectation and any form of preparation falls short. It is heartwrenching to see your own child being so sick, going through so many painful procedures, hooked up to so many machines and getting a drugstore full of prescription drugs. There is something so wrong with this scenario. And there are no answers. Even the bible falls short of a direct answer. God never gave Job an answer as to why he had to suffer and even Jesus cried out on the cross "Why have you forsaken me?". How can we keep faith if even God's own son struggled with the same question as we do? It is because of that: even God's own son struggled with the same question as we do. Although all this pain does not make sense, faith means believing in advance what will only make sense in reverse. We know that one day, it will all make sense. And that is what we as a family hold on to.

On our way again..

After the surgery to give Saskia a port, she was allowed home for one night before the chemo sessions started once again. Friday 20 September was the due date. Saskia was admitted once again at the Michael Rice ward in the Women's and Children hospital for 4 nights. The treatment had its usual effects and Saskia felt in general very miserable and sick, couldn't eat much and became very weak.

The hospital is great at trying to keep the patients entertained and Melanie has decorated her room in the hospital with all kinds of 1D memorabilia to brighten her days. But the best gift of all was an anonymous person/group who managed to give her two tickets for the live concert of her favourite band! The concert was on Wednesday 25 September, which was the day after her last treatment session, so it was a bit doubtful if she could go. She came home on Tuesday 24 September feeling very weak, but she was determined to go to the concert. So on the wednesday, Melanie and I dropped both Saskia and Marcel off. Marcel was in charge of looking after her during the concert and he did an amazing job! Although they left around half an hour early, they both had an amazing time and something for Saskia to remember.

Another great moment came on Thursday. Friends of us had put some money together to buy her a little miniature pony. Miniature is a bit of an over-statement as she is approximately a meter high, but sure smaller than the "regular" ones. When we picked him up last Thursday, she could not believe her eyes. She put her hands to her head, in front of her mouth and could not say one word. This is one of the only times we have seen her speechless....The pony came with the name "Little Sebastian" and Saskia thought that was a great name for a little horse! It is an amazingly friendly animal and loves the attention it gets from all of the family as well as from Gemma our Golden Retriever.

Meanwhile Saskia has slowly regained a little bit of strength and started to eat again, but developed a fever early this morning. Melanie is currently with her in hospital where Saskia is undergoing many tests to determine what this fever is caused by. Due to the chemo treatment, her immune system is very low and it may take a while to recover.

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.

Blue is Good!

As promissed, this time Saskia could get her hair blue. We all thought it was a good idea to do it now as soon as possible as last time (see our post of 9 April 2012, "The first Chemo"), she could only enjoy it for a couple of weeks.

So yesterday was the big day. Saskia was soooo excited and could hardly wait to get it done.
Her smile has not many times been any bigger than this. The before, during and after shots clearly show that she had some real fun doing this and more so this time as she managed to convince her dad to follow suit....

Today Saskia will spend most of the day at the Royal Adelaide show, where at the end of the day her little brother Arjen will play a showgame of soccer with his Hahndorf team.

Tomorrow Saskia will have a little performance with her school class in St. Marks's Lutheren Church. Not everybody there knows that she has already blue hair, but we are sure that when they see the father, they will instantly know it is her natural colour.....

Next week will be a very big week for Saskia, with daily trips to the hospital. Monday she will have an another test (MRI) followed by a bone marrow biopsy on Tuesday. This will be a day-surgery operation. During this biopsy they will also take stems cells as spare during the treatment. The drugs to be administered this time will be more aggressive to the bonemarrow and the best bone marrow you can get is usually your own.
Then on wednesday she will most likely get a port. Last time she go a PICC line, but that gave her all sorts of trouble, so the advice is this time to go with a port. This should make her life a little easier as she can even swim with that. This procedure is usually an over-night stay. On Thursday she will then get her first dose of chemo.

Once again we thank God for having us blessed with wonderful friends. It is great to have a laugh, wipe a tear, grab a shoulder, share a drink and just be ourselves with people who understand what we need.

Please do keep praying for Saskia and the rest of us (grandpa "G", Nana, Melanie, Sikko, Shaun, Marcel, Arjen and Pyrene) when we all start the next part of Saskia's journey.

Back to square one

On Wednesday Saskia had her MIBG scan of which we discussed the results with the oncologist today. There was not a lot of good news.
The lump in her neck was confirmed to be neuroblastoma. This was not new news, as we all knew that this was most likely not some sort of virus.
The operation of two years ago left a little bid of tumor behind, which was killed off during the chemo sessions. However, this little bid has now signs of life once again.
But the most disturbing message was that the neuroblastoma has now also spread to her bones. On the MIBG scan it showed that her second verterbra from the top (C2) is now neuroblastoma positive. This means that the scheduled operation of next week is cancelled, as it would not make sense to remove one lump and leave another effected area.
Saskia will have to undergo some further tests next week to determine a baseline for further monitoring. She will also receive a "port" through which her chemo will be administered and as of Thursday next week Saskia will start with intensive chemotherapy for at least 7 month, followed by "maintenance" chemo for another 4 month.

We are basically back at square one and there are no words to describe how we feel at the moment. All we can rely on is the words of Job who answered his wife: "Shall we accept good from God and not trouble?".

Please keep Saskia and us in your prayers.

Can I have blue hair this time?

Yesterday we met with Dr. Michael Switajewski, the surgeon who will operate on Saskia's neck. He did it twice before with remarkable limited visable scarring remaining. He explained that although the procedure is relative standard and that he has performed these type of operations many times before, he cannot go back into the same area indefinately without the change of real lasting damage.
Both the oncologist(s) and he are of the opinion that this should be the last time. In order to ensure that he does not have to go back in again, he will remove all of the remaining glands. There are 5 areas on either side of the neck with glands and he will clean out 4 of those areas. The fifth area (or actually the first) is nearby the chin and is not considered critical to be removed.
With this complete clearing out, the oncologist hopes that, by removing the complete area where it seems to be starting, the cancer will not return. Lets hope and pray that by removing the "factory" and the surrounding area, this battle will be won.
Next week Saskia will have a complete body scan (MIBG), which should show if there are any other further areas affected and on 17 September she will have her operation.
Saskia is slowly getting anxious about the whole process. She understands that after surgery, she will have to go through chemo once again. Even though she doesn't like her curly hair, she hates to loose them again. But she remains in remarkable good spirits. She keeps finding stuff to look forward to. He very first reaction after we heard three weeks ago that IT is back was so typical for her. Her very first words were:

"poop....can I have blue hair this time?"

And yes she can!

Here we go again

Yesterday we (Melanie and I) met with Saskia's oncologist, who confirmed what we allready knew but did not want to accept. The lump in her neck is considered to be a recurrance of the neuroblastoma.
During a meeting last Tuesday night with other oncologists and surgeons, the general consensus was that it is highly unlikely that it is anything else but neuroblastoma and everybody was of the opinion that it is best to be removed now and not wait for the results of a biopsy. In case a biopsy would show that it is something else, it still has to be removed, so better to take the lot out now.
Next week wednesday we will meet with the surgeon (same one who performed the previous two operations) and we will then know more about a date for the operation. The operation will be definately after a full body MIBG scan, which will be on Tuesday 10 and Wednesday 11 September.

This means that Saskia can still perform in her finals for callisthenics on Sunday 8 September...YEAH!!

After she was cleared last year, her body had to recover from the poison it received. She was very stiff and could not realy participate in any sports.
She found this type of gymnastics march/dance which she really enjoyed (and still does) and managed to train her body back into a pre-teen aged shape and form. She felt absolutely great and when we saw her perform not too long ago in the Royalty Theatre in Adelaide, Melanie and I had to wipe a tear away as both of us had flash backs of a year ago. We were soooo proud of her.
On Sunday 8 September will be the season finals and she has been training very hard to get there.

After the operation, Saskia will have to undergo once again chemo treatment. The number of sessions is still to be determined, but this will be anywhere between 2 and 6.

We slowly come to grip with the situation. Obviously we were all angry and had and still have many questions. But we have learned throughout the last trials not to ask too many questions as there are not too many answers. More research is needed to find the "kill-switch" so to speak.

Reading back through our blog brings us some comfort. We have gone through this before with the support of our church, school(s) and employer, our family, amazing friends and our faith, so we know that we can do this once again. Although we have no say in what cards we are being dealt in this life, all we can do is accept it and have faith that God is still in control, no matter what the outcome.

A stop-over?

It has been a long time since we added something to this blog and for a very good reason. The last year has been amazing for Saskia. She returned to school, her grades are fantastic, she joined calisthenics and just generally feels good. Her hair is getting long and curly and she is looking forward to high school.
The last year we have had some major changes to our family circumstances. Our household now has two more members: Saskia's grandparents from Singapore. They arrived last December and we hope that the Australian government is kind enough to let them stay forever. So with nine in the house we need to keep ourselves occupied and we are in the middle of opening a restaurant in Hahndorf in the Adelaide Hills.
All was going very well and we had grand ideas for the future.

And then there was this lump in her neck once again.

She had developed a little lump before, but the treating doctors mentioned that due to the removal of half of the lymfnodes/glands from the left side of her neck, in case of a cold, the remaining nodes would work a little harder and swell up. So nothing to worry about.
However this time it was a little different. The lump was quite substantial in size and after some tests (ultra sound and CT scan), the oncologists mentioned that it is highly likely that the neuroblastoma is back. Although there is a small chance that this is just a glandular virus, due to Saskia's history and the fact that the lump re-appeared at exactly the same spot as where the neuroblastoma originally started, the doctor said that we have to brace for another storm.

Now this just took our breath away. So many questions and so little answers:

why?
the journey was over, or was it just a stop-over?
why?
why?
she was cleared, how is this possible?
why?
why?
God, what do you want from us?
why?
why?
WHY!?

At this stage there are no answers. The fact remains that it is highly likely that Saskia's journey has to start all over again. Next week we will meet with the doctors once again and talk about the way forward. A date for an operation will have to be set, followed by some form of treatment thereafter.

All we can hope for is that it is just a bad dream and that the lump is some form of a glandular virus.