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.

Celebrity

After the all-clear some 3 months ago, Saskia (and us) has managed to pick up her life again as if nothing has happened. She went back to school and all that reminded her of the past ordeal was her bald head.
Her school was really good and allowed her to sit in class with her beanie on. There were some kids who tried to take the beanie off, but a little show changed all that.
By shear coincidence the school had a request of CAMP QUALITY to perform a puppet show to explain what it is to live with cancer. At the end of the show, the organisers wanted to present an award to the school for hosting the event. Usually the award is given to the principal, but this time obviously Saskia was asked to come on stage.
Since the show and being so exposed to the rest of the school, she was treated with all the respect that little kids can display. Well done for the school and well done for Camp Quality!



At the end of this third term, her class performed a replay of the musical "Grease". Saskia played a big role and was soooo exited to participate. Melanie took care of the make up for all the girls. Finally her wig had a real purpose here...They all had a ball. It was great to Saskia and the rest of her class enjoy themselves so much. Once again, well done for ST MARK PRIMARY SCHOOL

Her hair is now getting a little bit longer so she doesn't even want to wear the beanie any more! A big surprise came a few weeks ago when the White Pages of Adelaide was delivered.
Our blog on 15 May "An amazing week" had a couple of very good uplifting moments for Saskia and one of them was the photo shoot with Chris McDermott.
Although we were told that one of the photo's would be used as the cover for the White Pages, it is something else that it actually happened. Chris McDermott is the founder of LITTLE HEROES, which is a foundation that supports children with cancer. The foundation is doing an amazing job, not only in raising money to support various projects, but also to just bring a bit of fun to these kids and their families.

Saskia had monthly check-ups with the doctor, but last week was the big one we have all been waiting for. Last Tuesday she had all kind of scans and blood tests to see how her body was healing and obviously to check if IT hasn't come back. And it hasn't! We are so grateful and thankful for this. We were all a bit worried as Saskia had those really big pains at the back of her neck, but that seemed to be her nerves growing back. So it is a good pain to have apparently....

If you have been reading our blog from the beginning, you would have noticed that on many photo's of Saskia, she was accompanied by Jaymee Blades. A month or so after Saskia got the all-clear, Jaymee's sister Ashley was diagnosed with cancer. The Blades family has been instrumental in providing support during our ordeal, Katie Blades set-up a support Facebook page FOLLOW SASKIA THROUGH HER TREATMENT and managed to regularly visit Saskia when she was in hospital. It has been surreal to hear that this family was handed the same ordeal as us. I ask you all to pray for Ashley and the Blades family in the same way you have prayed for us.

Alleluia

And today felt like a big heavy weight was lifted from our lives. All tests showed that there was no neuroblastoma left in her body! The left over bits from both operations were completely gone.
There are a thousand things that goes through our minds and a thousand more we want to write and share, but at this moment all we can do is whisper "thank You Lord" a thousand times, because those words say it all.

Are we there yet?

And now we are eagerly awaiting what the final outcome is. The last few weeks Saskia has been recovering from her last session. Yesterday she had another bloodtest which showed she needed a platelet transfusion. We also spoke with the oncologist about the way forward.
Next week monday Saskia will have a CT scan of her neck area, followed by an MIBG scan over Tuesday and Wednesday of next week. If all goes well we should have the all- clear on Thursday, whereafter she will be monitored/scanned once a month for an undefined period of time.
Today Saskia went finally back to school, but had to leave early as she complained about pain behind her eyes. She has this pain now for several days, but the doctor said that it was most likely a bug which was going around. However after the pain today, we were advised to bring her back in hospital for another blood test and some further eye examinations.
The bloodtest showed that her haemoglobin levels were quite low (yesterday as well, but not low enough for a transfusion) and so she had to have another transfusion today. Her eyes were tested as well and tomorrow she will have to see an eye specialist.

In Holland we have an expression "de laatste loodjes wegen het zwaarst", which freely translated means "the last weights weigh the heaviest" (I'm sure there is an English saying for this, but not sure which one). This is certainly the case here. Over the course of the next week, she will be every day in hospital either to be seen by a specialist or to run a test.

Let's all keep our prayers up that next week Thursday we hear the good news.

Four sessions done

Last weekend Saskia had her fourth and last chemo session. The treatment was as expected: sick and difficult, but Saskia managed to stay strong so she was allowed to go home every day!
Over the course of last week she slowly recovered and even managed to partake in the school photo shoot. Last Friday she was back in hospital for a blood test and all looks to be ok.
Next wednesday she has to be back in hospital again and then we will also hear from the doctor what the following steps are. We do know that she will have a test done within the next weeks or so to see the results of the chemo, but what test we do not know yet.
If all goes well, she can go back to school next term!

Counting down for the last chemo

Although it will not be the end of the journey, at least a very rough section will be over. Friday 8 June to Sunday 9 June will be Saskia's final chemo treatment. She has been on regular checks in the hospital last week and her blood count is coming up again. So all is set for next weekend...
We all cannot wait to get it over with. Saskia is so eager to get back to school. If all goes well, that should be possible next term which means she only lost one term which is not too bad if you're in year 5.
Please carry her in your prayers for this last section and please do not forget about Graham as well. His radiotherapy completed last week.

When journeys join...

Even though this blog is all about Saskia and her journey, we would like to mention one of our good friends Graham Skinner and his journey with cancer.

We met Graham and his family around 6 years ago when they just moved over from England. They moved "Down Under" for only one reason and that was to get a better life, like everybody else that makes the big trip.
This better life got a drastic change in late 2007 when he was diagnosed with Melanoma. It was one of those awkward moles on his leg that grew weird. Doctors thought they got most  of it out, but some tiny particles had spread throughout his left leg. Again after an operation and removal of his lymph nodes in his leg, doctors thought they had it all out. This operation caused him to change his lifestyle drastically as any injury/bruise on that leg could potentially loose him his leg. He gave up his beloved mountain biking and in order to remain fit, he took up Kayaking. Everything seemed manageable untill that moment in July 2010 when the doctors said that the cancer has spread throughout his whole body. It was everywhere: his skin, his bones, his lungs, basically every part of his body was affected, except his brain. The cancer was in such developed stage, that there was not much hope. No chemo therapy or radiation would be able to fight this. Melanie and I visited him in hospital somewhere in September 2010 and we thought that that was the last we would have seen off him. He was in soo much pain that if he had to give a number between 0 and 10, he would have rated it 15.
There was however a glimmer of hope. Some drug was being tested around the world and it seemed that Graham's situation and cancer mutation was a perfect match for a test. This drug goes by the name or registration GSK211 BRAF Inhibitor (??) and it indeed did miracles. Within 24 hrs of taking the drug, his pain levels dropped to below 10 and within 48 hrs the visual signs of the cancer reduced significantly. After now being on that drug for one and half year, he is back at work and feels great.
The drug however does not cure the cancer, it only reduces it in size and contains it. Containment lines can be breached... It did so with Graham and there is now a spot right in the centre of his brain. The drug still manages to keep the rest of the spots under control, but it fails to do so for the one in his brain.
He has been told that once the cancer is in the brain, there is little that can be done and survival rates beyond 4 months are rare. He was told that radiotherapy is the only option of prolonging his life a little and he took the option. We have seen first hand what chemotherapy is doing to your body and I would not wish that upon anybody, but having radiotherapy on your brain is probably worse. In order to get to the cancer spot, they literally have to fry his brain.
In America there is a new drug by the name of YERVOY or IPI, which is based on unleashing the body's own immune system on the cancer. In layman's terms it boosts the immune system so much, that it can actually fight the cancer. This drug is not available in Australia and a complete course of it costs around $120,000. Even as a private patient, this amount is not covered. The big downside is that this drug also does not give any guarantees and it can even cause the body to collapse on itself as the immune system cannot distinguish any longer between good or bad cells.

Humanly speaking there is nothing that can be done for Graham. His journey is getting tougher and tougher. In one of our earliest blogs, I wrote that cancer is a fair disease as it does not discriminate. In Graham's situation we so much wish that it would discriminate. I do not think that there is a better bloke than Graham, no better dad and most likely no better husband. Any one who has come to know Graham feels instantly better. He is always positive, optimistic and cheerful. Even now.

Please do keep him and his young family in your prayers.

Feeling Great!

The third lot of Chemo went as expected: feeling sick and tired during the treatment, but because Saskia was admitted in hospital throughout the three days of treatment, she was under constant watch and care. It seems to have helped, because other than the usual tiredness, she feels absolutely great.


She eats a lot, drinks a lot, laughs a lot and is generally happy and good. What an absolute pleasure to see that change in her. Saskia is very confident with her appearance as well. She ain't shy no more to show her bald head in public and cannot wait to go back to school.
Next week at her school there is the annual photo shoot and hopefully she can partake in that.
We thank God that He has given her this period of respite and we pray that the last few weeks (two more befor the last treatment and then another 3 or so to get better again) will be similar.

KEEP SMILING SASKIA!

An amazing week

What a week this was. After last post a lot has happened and where do I start. Saskia was allowed home on 9th May. She still needs to take daily medication for the infection in her arm and she receives twice daily from a nurse-at-home an injection to reduce the blood-clothing. Saskia needs to be pushed around in a wheelchair as she gets very quickly tired, but she feels good and is in high spirits.
But before Saskia got out of hospital she got an absolute surprise present from all my colleagues at Maritime Constructions. Below follows the text (or at least part of it) from what Amy Kretschmer and Carmen Fiedler wrote after they gave Saskia her gift:

"...we all wanted to do something to help, and we knew the best way would be to do something for Saskia that would make her smile. So we set out to raise some money, expecting to put together a little gift to lift her spirits.  To our complete surprise, our little office pulled together and raised $1,182.00!

With this amount of money, we were able to make one of Saskia’s dreams come true – we got her her very own iPad.

On Tuesday, Carmen Fiedler and I took our daughters to visit Saskia in the Women’s and Children’s Hospital, to deliver her gift on behalf of everyone at MC. When we handed her the package, she pulled out an iPad cover, and looked a little bit confused. She then took another look and discovered her very own iPad, and could not believe her eyes! For the next 15 minutes she may well have been in shock; she giggled, hyperventilated and looked like she might even cry.  The only words she could muster were  I… got… an… iPad!!!’ 

 

I wish I had a video of her reaction to show you all just how much your generosity meant to this gorgeous little girl. We certainly achieved our goal of lifting her spirits.....

""

An iPad might be seen as just another ordinary modern electronic gadget, but for Saskia with her condition, it is actually a pretty amazing tool. On it she can skype with her family in Singapore even in hospital. She plays games, watches video's, is on facebook, makes notes, photo's and does some art. Saskia does not have to carry a whole bag of stuff with her when she goes to hospital and she does not have to watch all those repeats which are on television. All in all it is an amazing present, which we are all very thankful for.

Another one of those special moments was the day that Saskia was allowed to leave hospital. I will write a little later about the various support groups that exists to assist children with cancer and their families, but I do like to mention the "Little Heroes Foundation". One of the founding fathers of this foundation is Chris McDermott, a well known Australian Rules Footy Player back in the eighties and early nineties. On wednesday he was doing a promotion for the Little Heroes Foundation which involved a photo shoot with three children under treatment for cancer. Saskia was asked to be one of those children due to her bubbly personality and amazing smile! 

Saskia was so excited and rightly so! One of the photo's will most likely be used for the cover of the next edition of the white pages, but that's all supposed to be a secret....(oops).

The Little Heroes Foundation does a lot for these children. One of the things they do is provide free admission tickets to all kinds of shows. For last Sunday we received 6 tickets to go to the magic "Razzamatazz" show. A show filled with magic, dance and acrobatic tricks. During one part of the show Arjen was asked to be the assistant of the magician! Arjen went on stage in front of hundreds of people and together with Michael Boyd the illusionist, he performed the most amazing tricks! We tried to take a couple of photo's but they all failed. However the scenes are forever in our minds!

Marcel received some very good news this week as well - he has been selected for the soccer reps team for the Adelaide Hills as well as for his school Cornerstone in Mount Barker!

All in all a very good week and an everyday smile on Saskia's face! It definitely prepares her for this week where she will receive another lot of chemo as of Thursday through till Saturday.

Laughter: the best medicine

On any journey, there are good moments and there are not so good moments. There are bad moments and moments that are just downright very bad. However they are all part of that very same journey. The last 10 days or so were part of a very bad experience, but it seems that we've had the worst of this episode.

Yesterday Saskia was visited by her two bests friends Jessica Steyn and Jaymee Blades. Jessica came in the early afternoon and within no time they were giggling away! They warmed themselves up with laughter before Jaymee came later in the afternoon and boy, did they have fun! They were all laughing their heads off and that did Saskia soooo good!

It is amazing what a bit of laughter can do. The photo on the left was taken with extreme difficulty. They just could not keep still or sit quiet. After this photo was taken, they all burst out again and again and again. It was FANTASTIC!

When she got her blood transfusion yesterday, the girls came up with all kinds of vampire stories and tears were running down their cheeks.

Brittany's Cheese Cake

And today there was another great visitor: Saskia's "big sister" Brittany Herriman. who made her a fantastic cheese cake.....

They do say that laughter is the best medicine and although it may not heal cancer, it certainly blows off some steam.
Saskia does feel much better now and doctors are happy with her progress. She still has fevers, but they have come down. The pain in her arm and shoulder is not there anymore and she actually has been eating some real food.

And yes, she does not mind being her again!

"I don't want to be me!"

That were the words she cried over and over again yesterday. No matter how much we want to get some positive news, it just doesn't come.
The PICC line has been removed as it has developed a nasty infection. Those of you with some medical knowledge will know what a "staff" infection is. At least we know now what type of bug it is and it can now directly be targeted with the right antibiotics. There was also a blood cloth in her left shoulder (somewhere along the alignment of where the PICC line was) and she is in a bit of pain. Fevers are sill all over the place and her white blood cells are now so low (due to chemo) that she needs a blood transfusion most likely today. The taking of oral medication is becoming more and more difficult as her stomach is nearly empty.

Even though Saskia is going through a very rough time at the moment, even though she keeps asking "why me?" and telling us "I don't want to be me", she does understand that there is no other way.
As I wrote before, there is little immediate comfort in words if you're in so much pain. All we can do is repeat those same words in times of lesser trouble, so that it becomes a beacon of hope when she needs it most.
The bible is full of this. The bible never promises an easy, healthy and happy life. It does not preach that when you believe, all your worries are gone, all your pain is gone and that you live a long and happy life. But what it does do is give meaning to life. It gives hope. It provides for a beacon in times when you need it most.

We do not know how long Saskia has to remain in hospital for. This all depends on her fever. If she is fever free for 24 hours, she can go home. Please keep her and us in your prayers.

Hospital time

Yesterday Saskia had to rush suddenly to the hospital as she had developed quite a high fever. Several test later it looks like she has an infection either in or around the PICC line.
Due to her treatment her body cannot really fight the infection, so Saskia receives a high dosis of antibiotics through her PICC line at the moment.
It does not look like she will return home soon, initial indication is that it will be 4 days to at least a week...

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.