Done!

And that was it. No more hospital stays, or at least no more planned or scheduled hospital stays. We have been waiting for a long time for this moment and when the moment came, it was a bit of an anti-climax. There was no fire works, cakes or cheering crowds; just a walk down the hallway knowing that this would be the last time we stayed overnight there. Don't get me wrong here, the feeling was great; looking back at all these harrowing memories and knowing that this is all past now, is like a heavy weight being lifted from our shoulders.
This last hospital treatment was quit easy: it must have been because Saskia knew it was the last time. She ate 3 meals a day, she walked around the ward and smiled a lot. It was just great to see her like that. The first night, Melanie stayed over, the second I took a shift, the third it was her nana's turn and the last night was for Shaun. Marcel took his turn as well during one of the days and every one of the family managed to visit her in hospital. This week felt like a refreshing breeze after the various storms we have had here in the past.
The evening that Saskia came out, she was going to a pool party. This may have been a little bit too soon and too eager as she developed a cold, which turned into a heavy cough and saw her stay another night in hospital. It turned out to be a virus, which was relative easy to treat.

So this is it. There are only pills to take and tests to undergo, but the treatment is basically over. The final pill will be taken on Sunday 25 January. The tests which will follow will most likely be the standard tests which Saskia has undergone many times before.

Next year will be a year of change: No more frequent hospital visits, back at school, sports, full time work, restaurant open weekdays as well, my in-laws on permanent residency and Shaun nearly there.
Next year is all about getting our balance back, spending equal time with all of our children, trying to make sense of our last couple of year. I will be updating this blog every now and then as Saskia's journey will never be over. She will be living with the experience for the rest of her life. As we all do.

May I wish you a Christmas filled with joy, laughter, happiness and most of all: Love - For God loved the world so much, that He gave his one and only Son, so that everyone who believes in him will not perish, but have eternal life.

Only two more sessions...

First of all I must apologize for not giving any updates over the last couple of weeks. There are a lot of people whose only form of information about Saskia and us is through this online blog. And not providing any news, good or bad, is not good. So sorry once again, but as my mother always said: "no news is good news"... Which shows what positive view she had on life in general.

Saskia meanwhile has done very well. She feels very good, healthy and is counting down the hospital visits. She is doing relatively well at school. Obviously she missed out on many lessons, but together with her school, main teacher and home school teacher, Saskia managed to keep up with science and maths, which is actually pretty amazing considering the time she spend away from school. Her school has already indicated that as long as she shows an eagerness and willingness to learn, she will progress to year 8! Yeah. Saskia feels so much more confident about herself and her future and it is great to see here develop like this. All her siblings feel a lot better now as well so they made a collective selfie..

And if you have followed this blog for a while, you would know that Saskia's grandparents from Singapore live-in with us and were awaiting their permanent residency. And although it has taken a while, they have finally got it! They arrived back in Australia yesterday 9 November as PR.

Meanwhile, Saskia has managed to develop a little talent for playing piano... From a family unbeknown to us we received a beautiful antique piano. Originally build in Berlin by G. Schwechten around 1910/1918, we think it was brought to Australia somewhere after the second world war.

As a piece of furniture, it is absolutely beautiful and the sound is just mesmerizing (not when I play it though....). Pyrene has piano lessons at school and is doing very well, but Saskia has shown a real potential for it as well. She taught herself to play various songs and if the video-link here works, you should be able to hear it as well (the piano on the video is courtesy from the hospital).

The treatment meanwhile is still progressing. There are two more hospital visits left to go. She is now admitted for one of them and with a little luck she is out by Friday. Then three weeks of pills and injections, followed by her last hospital treatment somewhere early December. Her final pill and injection treatment should be over around her 13th birthday on 15 January. That will most likely be followed with an arrange of tests, but the full treatment should be over by January.
Throughout all this time, the last 3 years, but more particularly the last year and a bit, we have been carried by our faith, our family and our friends and colleagues on practical, emotional, spiritual and financial aspects. I am sure I will write a piece somewhere next year to try to put to words what it was like looking from a "rearview mirrow' perspective, but for now we are immeasurably grateful for the blessings we have received throughout this period.

Please do continue to keep her and us in your prayers as we move through the last stages of the journey.

Update....By Saskia

This week has been quite an event full week.
On Tuesday 7th of October we went on an adventure hike in the Mt. Lofty Ranges. Marcel, Arjen, and Pyrene were so enthusiastic about the hike that they were far ahead of us while me and the adults stayed behind slowly making our way to the bottom. One quarter through the hike and my mum and I had already been puffing and huffing. We called my fellow siblings so we could turn back. They were quite upset to turn back but in the end they were out of sight going back up the hill. I think I did quite well for a person that hasn't exercised in a very long time. My father had to physically push me up the hill. We asked my dad to bring the car down so we could get picked up instead of walking another 400 meters. My father drove us down the highway to see the bottom were the waterfall was and let me tell you it was mesmerizing.

I'm back in the hospital to spend another five days laying in bed having medicine and drugs flowing into my body. Yay! :(
I had my picc line done shortly after I arrived and I was back in bed.
I love the nurses and doctors and everyone in the hospital. Just the feeling of not being at home makes me angry, sad and frustrated. No matter how much people decorate the hospital I still wont get the terrible memory's out of my head. I can't get the fact out of my head that I came here heard that I had cancer and then my life was upside down.
Alright enough of the sad part of my life. I can't believe that the treatment ends on the 16th of January, that is so cool because its one day after my birthday! It's probably the best gift I could wish for!    

Antibody Therapy #2

Second one done and dusted...The new cocktail of drugs she received made her temperature spike a lot. She reached 41.5 degrees (or just under 107F). This made the doctors decide to suspend the treatment for several hours each day in order to keep her temperature and her blood pressure under control.
She was allowed home on Saturday 20 September, but again extremely tired.
This last week her uncle Shaun stayed most of the days with her, which she enjoyed a lot. I took most of the night shifts. Saskia was wondering why Melanie did not stay with her. We could not tell her at that time, but Melanie was busy every day to transfer Saskia's bedroom into something new and refreshing. Ikea had given us a voucher to be spend on Saskia and we bought a new high bed for her, re-decorated her walls (painting and wallpaper) and gave her cupboard a make over as well. It looks absolutely fantastic and the look on Saskia's face when she saw it for the first time was priceless.
She starts to feel now as well that she is nearly at the finish line and that the count down can actually start.
3 more hospital stays and then we're done!
In God we trust.

New Experiences

Two weeks have passed since Saskia got home and all is good. She is still very quickly tired and lost most of her appetite, but we can cope with that. Another side effect is that her skin gets very dry, mainly around her mouth and eyes. But now that the end is in sight, everything gets more bearable.
Last Monday Saskia had to go for an overnight stay to see how she would react on a mobile pump. The drug she gets now does not have any nasty side effects, but it need to be administered in a constant supply.
So she now walks around with a backpack which contains an electronic pump...
Saskia can't be bothered too much anymore. We reckon she has gone through so much, that she takes everything as it comes. And that is exactly the only way to cope with it.

Next week she will be again the whole week in hospital for another antibody treatment.
Nearly there...

Exhausted

Last Monday, Saskia went with Melanie to hospital to start her next stage. This stage actually started a couple of days earlier (on Friday 15 August). From that day onward she received daily injections of "Sagramostim" (or GM-CSF). This is a medicine similar to a substance made by the human body in small amounts and helps to produce normal infection fighting white blood cells. There is some evidence that sagramostin increases the anti-cancer effect of monoclonal antibodies.
On Monday she received a PICC line. This line (separate from her port line) was used to inject the monoclonal antibody CH14.18 (excuses for the medical terms here). This is a protein made in the laboratory and specifically designed to attach to neuroblastoma cancer cells. When the protein attaches to a cancer cell, the body's immune system is stimulated to attack and kill the neuroblastoma.
Her port line was used to keep the body under a continuous supply of hydration as well as morphine. While Saskia was admitted, she was attached to all kinds machines to monitor her heart rate, her blood oxygen levels and the rhythm of her breathing.
The cycle of administering the antibodies started daily at about 2 pm and lasted till about midnight. From 2 hours before till 2 hours after, she received high dose of morphine, which Saskia could regulate herself.
On top of all this she still received the various medicines for her shingles (which is now finally under control and fading off). During the administering, a nurse stayed constantly with her to monitor Saskia and the machines.
The whole week was not overly exciting (if you can speak of excitement that is), but we could see that it was exhausting to Saskia. She slept through most of the day, hardly ate anything (either not in the mood or just too tired to chew), but the most important part was that her pain was under control. The most pain she felt was level 6 (out of 10) and concentrated around her stomach and lower back (which is usually the case apparently). She had daily fevers, but this was a common side-effect to the treatment, so nothing to really worry about.
Saskia was so much looking forward to going home and she was allowed on Friday. We left the hospital at 2pm, but when we arrived home she was so tired, she went straight to bed. However, within the hour she had developed another fever, which climbed very quickly to 39.6 degrees, which means that we had to go back to hospital. So we were back in hospital at about 6pm and back in the ward at 8pm. She had a terrible night (restless, painful, itchy, etc), but the following morning, the fever was over and all blood cultures came back negative. Although the doctors still did not have a clue what the fever may have caused, she was allowed to go home once again. When she came home she was greeted by her little Duchess and both fell peacefully asleep on the couch.
Today she was still too tired, but she should be right for tomorrow to go back to school.
A few more sessions and then we're done. Keep fighting on Saskia!
The daily injections of sagramostim will continue untill Thursday and as of tomorrow she need to start taking isotretinoin, which is a drug closely related to vitamin A and has been shown to stop the multiplication of any remaining neuroblastoma cells.
Please do keep her in your prayers that she may find the strength within her to keep her spirits high.

A little delay

Last Friday Saskia went to hospital and it was decided that the antibody therapy would be delayed with one week. Her shingles must be under reasonable control before she can start with the treatment.
She got some different medication for pain relief, which settled her down a little more. Last couple of days she was a little sick, but nothing really to worry about.
So this coming Friday Saskia will receive an instaflon in her shoulder. This is a little tube just under the skin, through which daily an injection will be given. Then Monday next week, she will be admitted into hospital. She'll get a PICC line in one of her arms. Both the PICC line as well as the port she still has will be used to administer the various medications she needs during her hospital stay.

You Got To Be Kidding...

Sorry for the lack of updates since our last post. We have just been enjoying Saskia being in relative good health  and returning back to school. It was great seeing her smile every day of the week. She sees the future bright and clear and is determined to go to year 8 next year. Her home tutoring is going great and she slowly starts to feel like a normal person again. Even her hair starts growing again (yes, photo's will follow soon...).
However.....last Sunday she had some pain in her back, just under her shoulder. We all though it was just a muscle pull as she has gone through a bit of a growth-spurt and has been relative active over the last couple of days, but considering the circumstances, we had better check it out. The emergency doctors at Mt. Barker hospital basically confirmed our own diagnosis and after a couple of painkillers, the pain seemed bearable. Monday however the pain was still there and that night she could hardly sleep. Today she did not go to school and we saw some blisters appearing. We knew this was no good. Last time this happened was when she was about 7 years old and was then diagnosed with shingles. We called the oncology ward, who advised us to go to the GP, who confirmed that it was shingles.
Shingles is caused by a viral infection of the nerves just below the skin. It is caused by the same virus that causes chicken pox. Once a person has had chicken pox, the virus remains dormant in the body and can re-emerge as shingles when the immune system is down.
Now this just blew our minds. We were just preparing for her anti-body maintenance treatment, which is due to start coming friday and now this. We are hopeful that the treatment still continue as per schedule as it at least means that she will be under morfine-control which will suppress the pain she presently has.
Please pray that she will continue to be positive about all that is to come.

No Evidence of Disease (NED)

After nine month of chemo sessions, radiotherapy, operations and a stem cell transplant, Saskia is now once again in remission. This is a huge relief as prior to the radiotherapy, there was still active cancer in her C2 vertebrae. But now all is gone and we can all breath a little better and start focussing once again on a complete recovery for Saskia.
Although we are extremely happy and thankful, the fact that this is now the third time that we hear that Saskia is in remission, means that we are a little bit cautious to be over-joyful. We all know and realise that being in remission is not a cure. Being in remission means that there is no sign of any active cancer. This does not mean that is is not there, it just means that modern technology cannot spot any active cancer particles which may still be in the body.
However, this is the best outcome we could have hoped and prayed for and we continue in full confidence to the next stage. When this stage starts is still a little uncertain, but it will be within the next couple of weeks.
Meanwhile, Saskia will recommence school as of next week and she will receive some additional home tutoring so that the subjects taught are not overly foreign to her. She is determined to still progress to year 8 and we are sure she can do it. With the help of her school Cornerstone College, the Home Tutor Scheme through the Childhood Cancer Association and her home school tutor, Mrs Colleen Bradfield, we are sure that Saskia has all the assistance she needs to progress to year 8.
Please do continue to carry Saskia and us in your prayers as there is still a long way to go.

Don't they have enough of me yet?

Well that was it for radiation. Saskia has done amazingly well. She is not too tired, still jumps around and is overly happy that she completed this major milestone yesterday without too many difficulties. Her throat hearts a little and the skin of her neck is very dark, she is a little tired, but that's all there is to it. She felt so good, she even went to school today. Well done to her.

The next stage is a little unsure. What we do know is that she will have to undergo a range of scans and tests over the next couple of weeks to determine what the effect of the last part of her treatment has been. If these results fall in line with the expectation, which is no evidence of disease left, she will follow a maintenance treatment.
The standard maintenance treatment involves the usage of a form of vitamin A, which is designed to suppress the further development or growth of any cancer cell left in her body. As we know, even if the scans show that there is no further evidence of disease, this does not mean that it is not there. It just means that the particles are too small to be detected by modern technology.
This vitamin A treatment has been moderately successful. There have been many cases of relapse, despite this vitamin A treatment. There is a new treatment on the market, which in Australia is still under trial. During the trials in America it has shown great potential and a great jump in the rate of success. This is an antibody treatment, which in layman's terms is a form of immunisation.
A special designed antibody is injected into the patient. This antibody wraps itself around any left-over neuroblastoma cell and then signals the immune system to get rid of it. To boost the immune system, the patient will also receive a boost to grow more white blood cells and another boost to increase the working of those white blood cells. This whole treatment is done together with the vitamin A treatment.
The only issue is that this antibody does not just wrap itself around the neuroblastoma cells, it also wraps itself around the nerve tissue. And although it does not do any harm to that tissue, it does signal the brain that there is pain. Apparently so much that the patient need to be on constant pain relief during the treatment.
There are 6 treatments over 6 months. Each treatment is given in hospital and will take anywhere up to 10 days in hospital, while on morphine and other type of pain killers.
Saskia was obviously devastated to hear that she will still have to be in hospital for so long. She shouted out with big eyes and open hands: OOOHHH DON'T THEY HAVE ENOUGH OF ME YET?!!?
But she also knows very well that this is the only way to be relatively sure that the cancer will not return.

In case the scans show that there is still some cancer left, then she will still get the maintenance treatment, but then combined with potentially some radiation or an MIBG treatment. As you know one of the scans is an MIBG scan, which identifies neuroblastoma. The MIBG treatment means that a higher dosis of MIBG is given, which potentially kills off neuroblastoma.

However we do not want to think too far ahead. For now we will enjoy Saskia's relative good health and good spirits before we continue on this journey.

A Little Scared

Earlier in the day we saw Dr. Petra Ritchie, her oncologist, who is very happy with her development. Even her bloods seem to be doing very well. She only need to watch her weight a little as she dropped around 1kg, but other than that nothing major. Thereafter we went to the RAH for her first session of radiation.
Today was the set-up and creating a background x-ray, so it all took a little longer. Saskia was a little nervous and anxious to the point she nearly had to vomit because of a strange smell in the hallway of the hospital. In the end the smell turned out to be the smell of soup.... When she new where this smell originated from, she felt much better and a little silly as well.

We went into the treatment room and saw this massive machine which could have been used in any science fiction movie.
Computer screens, cameras and digital bleeps everywhere. The radiologists were very friendly and helpful, which calmed Saskia down a little, but not too much. She had to lay down so that her pre-measured mask could be fitted and marked out correctly.
Saskia became a little claustrophobic and asked if some adjustments could be made to the mask, which was possible.
Then came the moment to say goodbye.

I was not allowed to stay with her, but I could watch her via the camera's and talk to her as well through a microphone. When I left her there my heart sank a little in my chest and it dropped a little further when I saw her on the screens. Imagine a very still body with a mask completely covering the face. The realisation that it was my own daughter laying there was a little harder to witness than I could have prepared for. But then I realised quickly that it would be much scarier for her, being all alone, than for me, so I grabbed the microphone and spoke to her. She later told me that she really was scared and nearly started to cry, but then she heard my voice and knew that everything was right.

First a couple of X-ray's were made and then the radiation started. There were about 5 or 6 sessions from different angles and each session lasted less than a minute. Saskia later described it as not painful at all, but more of a warm feeling, like someone putting their warm hands around her neck.

All-in-all not too bad. We have now some moisterising cream to keep her neck area moist and hydrated, as radiation treatment has a similar effect on the skin as being sunburnt, but for now that is all we have to worry about. This will now be a daily excersize for the next 2½ weeks, thereafter a variety of scans to see the results. If all is well,she should only have to have further maintenance treatment.  

Radiation

One of the last steps in this journey will start tomorrow. Saskia had a meeting with the radiologist more than a week ago, where the whole procedure was explained. For the next 2-3 weeks, Saskia will have to be in hospital on a daily basis (except weekends). This will be done in the Royal Adelaide Hospital as there is no such machine in the Women's and Children.
A special mask for her was made so that her head and neck will always be in the same position when she receives the radiation. She was explained that she should not feel anything and there is no such thing as feeling unwell. It will take however a lot of energy out of her, especially after the second week, but other than that, it should not be such a big ordeal.
Saskia herself is getting much better now. She is eating a lot more and re-gaining her strength. We had to get her a wheelchair as walking any longer than a minute or two was too much. She does however take the dogs for small walks again which is fantastic.
She feels quite anxious about the next couple of weeks, which is quite understandable. She is sooooo over it all (aren't we all?), but she also knows that she has nearly reached the end of this horrible ordeal.
Lets hope and pray that this time she has beaten it for good. Please keep her in your prayers when she starts the next stage.

Home Sweet Home

Excuses for a little late update, but we had a couple of very busy days. Saskia was finally well enough to come home last Monday. Over the course of the previous days, her pain relieve was slowly reduced and was completely disconnected on Sunday. This caused some issues over the course of the following days, as her body was used to a constant supply of sedation drugs, which was no longer there, which caused a great deal of restlessness. Thank God for good books! Only when we read "Black Beauty" to her she managed to get to rest and fall asleep...
So Monday was the day. The doctor mentioned that if Saskia managed to eat something and keep it in, he would allow her to go home. She was so nervous that the first bite she took she had to vomit out. Poor girl, she was desperate to come home but could not keep much in due to the anxiety. In the end she managed to eat 3 bites of an apple and that was enough to get her home.
Obviously she has only limited energy to do anything. She can hardly walk, so we got her a wheelchair. She sleeps a lot of little sleeps, but manages to slowly get back to her usual self. She eats and drinks a lot more now, although she says that all the tastes have changed. Her spirits have lifted dramatically and today she was actually smiling most of the day. That's how we like it!

Saskia is blessed with such a strong and beautiful spirit, it is amazing. We have never seen anyone of any age so sick as she was and I hope and pray that she will never have to go through something like this again. The transplant was necessary in order to replace her bone marrow. In order to replace her bone marrow, the old one had to be wiped out. We can read about it what this will do to your body and try to prepare for it, but to witness this happening on our very own child is something that I cannot describe as words will fall short. It were the most horrifying weeks we have had as parents. But thank God this is behind her and us now.
She's on the road of recovery and that is all that matters.

And then .... a Smile!

Not many, but still she managed to smile a little today. Praise be to Him!
Her stomach has settled a lot, still a little crampy, but nothing realy serious. She still has mucositis (the blisters and ulcers all the way to her stomach), so she cannot take in any food or liquids and she still has a reasonable level of constant pain. She is still on constant as well as 'patient controlled' pain relief, which makes her very sleepy and causes her oxygen levels in her blood to drop. This means that she will have to wear a mask for additional supply of oxygen.
She looks a little bit like a Christmas Tree at the moment: a port and a pic line with a total of 5 machines, an oxygen line and a line to her foot to measure heartrate and oxygen. However, the important part is that it seems that the transplant has worked as all of her blood indicators are climbing back to normal, which is great news.
She can sit up in bed again and even manages to do some activities (building lego, always the best...). Talking is very difficult due to her ulcers, but she still manages to communicate.
There is still a long way to go, but we are hopefull that she can be out of hospital early next week.
Thank you all for your prayers and please continue to do so as we're not there yet.

Childhood Cancer is Pure Evil

Now I usually do not start with such bold and confronting title. However, this last week and especially these last few days, we have seen the true evil face of childhood cancer and the treatment thereof. Over the past year we have seen Saskia in pain, in all kinds of discomfort and begging it to be over. We have always managed to sooth her pain or make her more comfortable. She always managed to pick herself up after a while and bring back that beautiful smile of hers. But the last few days showed us that those pains were nothing compared to what she has to endure now.
Last week she received her most heaviest dose of chemo. It was targeted at her bonemarrow and it sure worked: her immune system got wiped out. We never take real note of our immune system, but it is constantly at work. Saskia was allowed home last Friday although she was very weak. She could hardly keep anything in her stomach, but insisted on going home. She tried her hardest to keep something in, but nothing worked.
On Saturday she pleaded to get back to hospital as she could not take it any longer. Since then her body has slowly stopped repairing certain common damages. Ulcers have appeared in her mouth and extent all the way down to her stomach, her throat is soar and raw from all the vomitting, blisters on her tongue, which start to bleed, blood in her urine, her stool and every part of her body just aches and aches. And on top of all that pain and agony, her body 'decided' it was time to become a woman. This should have been her special time, but because her body cannot heal, it caused great additional pain and agony.
When she wakes up, she needs to vomit, thereafter she cries herself to sleep. Nothing seems to calm her down. Fevers are coming and going. She is now on constant pain relief which she can dose herself by pressing a button. In order to still give her body the desperate energy it needs, she is on liquid food. She gets daily platelet transfusions to try to support her immune system.
The treating doctors say that her symtoms are common for this part of the treatment. It will take anywhere up to two weeks, before her own body has found the right balance again.

There a few moments of respite. She feels comfortable when Melanie hugs her to sleep or rubs her back, or I massage her head or read stories to her, keep my hand on her stomack, but for now, those moments are few only.
It hurts so much seeing your own child going through all this. We need to be strong for her, so we swallow our tears and smile the warmest and most re-assuring smile to her and we tell her that everything will be alright in the end.

But the truth is that we want to be hugged to sleep as well. But God seems so far away. But then when we need it most, He re-assures us:  "In the world you will have tribulation. But take heart; I have overcome the world.”

And we do take heart.

In God we trust

What a fantastic couple of days we had during the Easter weekend. Saskia was allowed home on the Thursday before Good Friday and the Little Heroes Foundation had organised that we could spend the weekend at Hindmarsh Island. A wonderful family has donated their holiday house for the use of families supported by Little Heroes. It was a wonderful time to be away from it all for a while.
Saskia managed to forget the effects of her operation and was happily sitting along the waterside and catching many a fish.

As earlier mentioned, the operation was a great success. A total of 15 nodes have been removed of which 3 still had active cancer. This was a bit of a surprise as we all thought that there was no more live tumour left, bar her 2nd vertebrae. The MIBG scan however can only detect active neuroblastoma if the size of the tumour is larger than 1 cm. The 3 nodes were smaller than 1 cm, so the scan did not pick these up. However 80% of these tumours was already dead, which proves that the treatment is working.
Our theory is now that Saskia's neuroblastoma is a very slow growing cancer. The last time when she was declared to be in remission (after an MIBG scan in June 2012), there were still some small particles left, which were not detected. These particles started to re-grow again, which made her relapse. With this operation, ALL of the nodes have been removed, so we are relative comfortable that there is no way the cancer can come back here.
All that is left now to treat is her 2nd vertebrae. This will be done with one more chemo session and one lot of radiotherapy.
The chemo will start next week. This will be a very heavy dose and targets her bone marrow. This treatment will be the heaviest she has ever had and will wipe out her immune system completely. There will be virtually no platelets left to stop any bleeding, no white blood cells to fight any infection and no red blood cells to bring vital oxygen to any organ. This means that she will be extremely weak and need to stay in hospital all of the time until she has regained some strength.
On Monday thereafter (12 May), she will receive her own stem cells through a stem cell transplant. It will take a while before this transplant will have its effect, so in all likelihood, Saskia will have to spend around 3 weeks in hospital. As she will have no immune system to protect her, she will have to be in isolation. Only one family member is allowed to stay with her.
We ask you all to carry her and us in your prayers as the coming period will be one of the most trying ones.

Happy Easter everyone!

The operation was a success. It lasted for four and a bit hours, but the surgeon mentioned he managed to remove everything that he could find. This also means that he had to take her left neck muscle, but he said that this would not have a major effect in the long run. Lots of neck exercise and physiotherapy over the next foreseeable future and all should be right again. There was one node that the surgeon could not reach, which was quite high up in the neck, but after an extensive discussion with the oncologist it was decided to leave that one in. After all this is over all that should be visible is a little dent in her neck and some scarring, but this should all be covered by her hair when that grows back.
She had a lot of pain after the operation (obviously), but she was able to come home on Thursday! That was a real surprise as we all thought that it would be at least Friday or even Saturday, considering the severety of the operation. But then again, Saskia would not be Saskia if she doesn't surprise us....

This weekend we are celebrating Easter. Yes we will have a few eggs, but this weekend we are reminded once again, that our Creator took our sins upon Himself so that we can live in his eternal grace. This weekend we are once again reminded that the world we live in is only temporary and that there is an eternal life hereafter (whether you believe that or not) and it is up to us to choose where to live in eternity.
Have a happy Easter everyone!

A little anxious for tomorrow...

Saskia is a little anxious for tomorrow. She feels great, her platelets have been behaving with fluctuations between 55 and 72, she has had sleepovers and her school report was better than we could have hoped for. Tomorrow (15 April at 1 pm local time) she will have her operation with the aim to close that cancer door forever. 

Saskia is not afraid for the operation, she is just a little anxious for the period between being put to sleep and the moment she can walk out of that hospital again.

We ask you all to keep her in your prayers, for courage, for faith and for a painless and speedy recovery and that the cancer cannot return there ... ever ...

Fasten Your Seat Belts ...

Saskia had her 6th chemo session as from Tuesday 10 March till Thursday 13 March and all went reasonably well. The last day she felt very nauseous, but she was still allowed home on the Thursday.

Saskia stayed home over that weekend to rest and relax and felt good enough to go to school on Monday. Tuesday 17 March she had to be in hospital again for a blood test and although her platelet count was very low (14) she was allowed to go home without a blood transfusion. However the day after we took her earlier out of school as she did not feel too good and had developed a little fever. Back to hospital it was where she stayed until last Saturday. During this last stay in hospital, she was also educated a little about what lays ahead and she is a little anxious so to speak.

The next couple of weeks/months will be the heaviest and most difficult part of her treatment.
On 15 April she will be admitted in hospital for an operation. This operation is aimed to remove the bits of (dead) tumour which are still left in her neck as well as all of the gland/lymph nodes in that area. There are basically 5 areas of gland/lymph nodes on either side of the neck and all of those areas (bar one) on the left side will be removed. This is done to ensure that the cancer cannot come back through these channels in this area. One of the downsides of this operation is that it is likely that her left neck muscle has to be removed as some of those glands apparently hide in there or very close by.
After Saskia will have been recovered from that operation, she will receive between 5 and 8 days of high-dose chemotherapy which is aimed at destroying any left-over active cancer cells and most of her bone marrow.
Straight after that she will receive her stem cell transplant for which she has to remain in hospital for due to various daily checks and observations to ensure that the transplant has actually worked.
After recovery, she will receive another three weeks of radiation. This can most likely be done as an outpatient, but it requires daily visits to the hospital.

As you can imagine she is really not looking forward to all this. Although she has had a few "dirt roads", a couple of "detours" and several flat tires along this journey, the path that lays ahead is more like "fasten your seat belts ... rough terrain and bad weather ahead ....".
There are a couple of other practical challenges as well. After having been absent from work for 7 months it is time for me to return to work (bills need to be paid). We will reduce the opening hours of our little restaurant so that Melanie can spend more time with all the kids. And we are still waiting on the return of Shaun and the visa approvals for my in-laws, which places quite a bit of additional anxiety to all of us.

I am not skilled to understand

What God has willed, what God has planned;

I only know that at His right hand

Is one Who is my Saviour!

"There is no reason to be sad..."

I told Saskia the other day that we as parents were very proud of her in the way she keeps herself, that even in the midst of things, she never is too upset for too long. She said that there is nothing to be sad about and that it is of no use to cry about something you cannot change.

These words just blew my mind away as you expect this type of response from an adult. She is an amazingly strong little person. If more people (adults) would have more of the attitude Saskia portrays, I reckon the world would be a much better place.

The results of the tests of the previous weeks came back yesterday and we are reservetly happy with the outcome. The tumour in her neck has shrunk substantially and the left-over bits don't show any sign of active Neuroblastoma. The C2 vertebrae however still has active cancer in it. Although the cancerous area in her vertebrae has reduced, it is not gone yet. The overall good news is that there is still no sign of any cancer elsewhere in her body.
The treating team is happy with the progress and says that this outcome is as good as it can get and that the rest of the treatment will take care of her vertebrae. So I guess we have to be happy with the progress as well, even though we would have liked that there was no longer any active cancer.

On Tuesday Saskia will receive her sixth cycle of chemotherapy for which she has to stay 3 days in hospital for. After she has recovered from this, she will be operated to remove all of the left-over bits and all of the gland nodes on the left side of her neck. Thereafter she will receive another chemo treatment which targets the bone marrow, followed by a stem cell transplant and radiation.

We are still not there yet, but "there is no reason to be sad....".
Please continue to pray for Saskia and all who care for her.

Preparing for some tests

Saskia has been doing great the past few weeks. She did receive a couple of platelet transfusions. Doctors are still a bit puzzled as to why her platelets don't want to go up. The steroids she was on just prior to her previous chemo session did work as the platelet count went to about 70 which was an amazing result. The treating oncologist wanted to give Saskia another type of bloodproduct last week, which is supposedly better than the steroids, but suddenly her body "decided" to make a few herself, which is a little bit strange, but great news nonetheless.
Saskia has been in and out of hospital, mainly for the blood tests, but in between she managed to go to school and keep up with her social life. She starts to see her journey now more as a burden than ever and just wants to go on with life. Although the end of this stage of the journey is in sight, there are still a couple of major "roadblocks" to take.
This week on Wednesday she will have a CT and a bone scan while next week she will have an MIBG scan. These tests are to determine what effect the chemo treatments have had so far and to redirect treatment protocol if need be.
At this stage all we know is that there is one more chemo session to go through to finish the initial cycle; one major operation to remove all of the left over bits of tumour and all of the glands in the left side of her neck; one major chemo session to target the bone marrow and one radio therapy session (of 3 weeks) followed by maintenance treatment for about 5-6 months.

However this may all change depending on the outcome of these tests. Please keep praying for Saskia and all who care for her to not give up faith.

Our Super Hero!

Definition of Courage: The quality of mind or spirit that enables a person to face difficulty, danger, pain, etc. without fear.

Saskia has shown us last week what an immeasurably courageous girl she is. She knew from past experience what her last week's treatment would be like. She was determined to not let that happen again. She did not want to remain in hospital and the only way to do that is to eat and drink, no matter how difficult it would be. And she did just that!
We are soooo proud of her. Even the doctors were amazed with what she did. To the extend that she was allowed home on Saturday morning. Feeling very tired and exhausted, but utterly contempt with herself that she did it.
She returned to school today, by the end of this week she will have a check-up. By the end of this month Saskia will undergo a range of tests (MIBG, CT and Bone Scan) to see what is left of her cancer. Thereafter there are two more chemo sessions, a stem cell treatment, one radiotherapy session (of 3 weeks), one operation and an undefined period of maintenance treatment.

We are absolutely certain that she was carried by all of your prayers and we thank God for giving her the strength and courage to face last week's evil. We are encouraged by all the well wishes, prayers, offers to help out and ask you to please continue doing so, especially now that we progress through the real hard part of her treatment.

Next stage

Saskia had another bone marrow biopsy today to check once more if there is anything else going on regarding her platelets. The previous biopsy showed that there were the so-called "megakaryocytic" from which the platelets are being produced, but just not enough. There are several theories as to why this is and one of them is that the body reacts as if there is an infection somewhere in the system or that the bone marrow is damaged beyond repair.
I just stick with this last one as it is the easiest to understand. There has been so much poison injected into her system, that parts of the functions of the bone marrow just cannot be repaired.
Saskia is now on a daily dose of steroids, to see if this will increase the production of platelets.
On Monday 03 February she will go back to hospital and irrespective of the platelet count, she will start her next chemo therapy.
This one will be the same one which she had early November of which she had a very bad reaction to (and which was the cause of the drop in platelets for the last two months). This means that she will have to stay in hospital for a minimum of 5 nights but potentially 7 nights, depending on how she reacts. Last time we were back in hospital within 24 hrs of being discharged and we do not want to repeat. So she will remain in hospital until she can keep some food and drinks in her stomach.

We are immeasurably thankful for all your prayers for Saskia. She is an amazingly strong girl and never lets herself down too much. We ask you to keep praying for her and us, specifically over the course of next week when she will receive this very strong dose of chemo.

My First Day Of Highschool...

Today I had my first day of high-school. I personely think it was an awesome day, everything looked so much bigger in Cornerstone College. It was a long but a short day, only because we had labell everyone of our books and that took FOREVER... the rest of the day was quite nice but not so relaxing because we had P.E. (Physical Education) in which we did alot of little activities. I met alot of new people, which was quite nice because this is usually the best opportunity to make new friends and to learn about how they live and what interests them, because I know for one thing is that everyone is different, even the most identical twins in the whole world, they would have a different personality and a difference inside of each one of them.
After a quite hot sports lesson, we went back to class to finish of the rest of the day with a nice German lesson. Well that kind of wraps up my day so to finish of this paragraph... Gute Nacht (Good Night).

Animal Farm

15 January 2014: Saskia's 12th Birthday! Although we had several hospital visits to check her bloods, all in all we managed to celebrate it in reasonable fashion. On Tuesday evening we went to the last remaining drive-in cinema in South Australia at Gepps Cross with two cars, fully loaded with giggling girls, followed the next day with a visit to Aldinga Beach. This had to be later in the day as Adelaide is/was sweltering through a heat wave (45+ degrees Celsius, or for those of you in America: more than 113 Fahrenheit).
We have seen Saskia grow into a beautiful, wonderful, loving, and gorgeous young girl. Even under the given circumstances, she has maintained a very positive attitude and always looks forward. She has a large group of diverse friends and her love for animals is growing with the day. She wants to become a veterinary scientist working for a governmental organisation, an interest sparked by her natural ability to be with animals and the career of a very friend of us.
Saskia's biggest wish (besides the obvious) was to get a dog for herself. Although we do already have a dog, a cat, a miniature horse, two sheep and two ducks who accidently wondered in one day, we though it would be a good thing for her (and Gemma our Golden Retriever) to get her a little cuddly friend. So we bought all the little things a new puppy needs and progressively gave that to her. At first she did not really know what to say, but managed to keep a smile on her face. But when we gave her a piece of paper with some 20 different dog photo's and the text "Please choose me", she nearly screamed the roof of our house!

Although we said that the next round of chemo was to start today, it didn't....Today's blood test showed that her platelet count was only 33, which is only 3 more than a few days ago. Dr. Petra Ritchie, Saskia's oncologist has now said that she would still like to wait a little longer before making a decision. But if the count remains low, it is likely that Saskia will still have her chemo treatment within the next 10 days and not receive a stem cell transplant. The argument is that if she receives a stem cell transplant, it would be a waste as it would be wiped out during the next session. Saskia's bone marrow is behaving reasonably well, bar the platelets, however the platelets can be "topped up" so to speak.
Monday 20 January we will be back in hospital. If the platelet count is up, Saskia will start 5 days of chemo, if not, then we just have to wait a little longer....

Bloody Platelets....

As mentioned in our last update, Saskia received her fourth treatment on Friday 27 December through to Sunday 29 December. Her platelet count was still very low (32 in stead of the required 75), so she received half dose of chemo only, which made her feel not too bad. Saskia knew that if she did not manage to eat or drink anything, she would have to stay longer in hospital, so she did everything possible to make sure she did eat and drink something. At least she felt realy great for the New Years Eve party at our place.
However the platelet count remains a major issue. On 31 December her counts were 25 and was told to be careful and not bump into anything. Now being Saskia and fed up with all the restrictions she has, she "forgot" about that and climed into the rope swing we have. After several swings obviously she knocked herself against the tree, hereby bruising most parts of both her legs.  On 2 January we went back for another blood check and her platelet count was only 9, which required her to have a transfusion. Obviously the doctors were not to happy with all the bruising and gave her once again a little lecture of what could happen if the bruising was not on her legs, but for example in her head.

Saskia took the advice to heart and tried her very best to not harm herself again. However..... She stayed over at a friends place on Saturday night and realy behaved very well. They stayed indoors, watched movies, played games, shared photo's on ipads, ipods, etc. All went well untill her ipad slipped out of the cover and knocked one of her teeth through her lip. The photo here is the one she sent us Sunday morning, which woke us up realy quick.
It clearly showed that her platelets were realy down and back to hospital it was, where it turned out that her count was only 8...
She got another transfusion and luckily her face looks much better now. Also Saskia is well aware of what the function of platelets is now.

The doctors still do not realy know why her bonemarrow just doesn't make sufficient platelets. Our initial scare that it was a secondary cancer (which is likely with her treatment) which caused this "malfunctioning", was luckily ungrounded. It is possible that her bonemarrow is permanently damaged and is in need for a stemcell treatment. Luckily at the start of her treatment (after the first chemo session), there were sufficient quantities of stem cells harvested, so this is all possible. We hopefully know more over the course of the next week or so.

Her next treatment is at this stage scheduled for 16 January (straight after her 12th birthday). This treatment will be the same one as treatment number 3, which means a full week in hospital and feeling very, very sick.
But we do enjoy the in-between times, even with all the bruising...