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.

The Real Deal

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

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

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

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

Quick update

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

Date for Operation

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

Last week's results

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

The message of a stranger

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

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

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

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

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

Saskia's Birthday tomorrow

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

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

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

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

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

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

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

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

This sounds awfully similar to what Jesus Himself said:

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

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

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

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

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