Pyrene's Hair Donation

No news is good news and as our last post was around 10 months ago, all must be well and all is well. I am sure that Saskia will write something herself soon, but I just wanted to update you on something her amazing little sister Pyrene did.

Pyrene is 9 years young and had hair like Rapunzel! She loved her long hair and it was her distinct feature. Her hair was the longest in our house, in her class, of her school and most likely of our general neighborhood as well.

Her hair was amazing and as you can see from this photo, it was very artistic as well. As grandparents, parents, brothers and sister, we could not ever imagine Pyrene without her long hair.

But then one morning several months ago, she said that she wanted to donate her hair to the kids who lost it due to cancer treatment. Saskia without hair had made such a lasting impression on her and she thought now was the time to cut it off and give it to the kids who need it most.
We though it was just a passing phase, but Pyrene was very determined and insisted for a very long time that her hair should be cut off.

So we researched the various hair donation options and finally choose "Variety, the Children's Charity" organisation to donate her long locks.
Obviously we choose "Chilli Hairsalon" (remember the one owned by Krista who also organised Saskia's fundraiser several years ago) to take the honors of using the scissors.

Last Saturday 17 December 2016 was the big day. The appointment was at 9am and we were all very excited, especially Pyrene. The next couple of photo's will speak for themselves as I cannot find the right words to describe it. It is obvious that we are very very proud of her and I am sure there will be a very lucky child wearing a wig from Pyrene's hair.

New scans and a wholelotmore!

Hey everyone it is Saskia!

I know it has been a long time since I last updated but there are so many new things that I have done that I never could do in hospital. I will tell you all about it in this update!

First before I go into detail about my new adventures I want to say that this week I will be having many tests and scans done like an MIBG scan, MRI scan, PFT’s and I can’t remember the rest of the names but I am a little nervous, as usual, for the scans but I know that whatever happens I will always have the amazing support I get from everyone.

Well one big major aspect of this year was me starting long distance education. I have to say that I love doing this schooling because all of the booklets include Christianity in some way which to me is really important for a learning mind. I haven’t found a sport to do yet but I’m slowly edging towards softball although I feel I wont be very good at it. My hair is also currently at my shoulders which makes me really ecstatic because finally after so long I can tie it up!
My best friend (Emma) and I made a waterslide out of tarp in the warm rain and it was so cool. Although we did get a few scratches from sliding into the fence but that was part of the fun.

Last weekend we went to a close friends wedding and it was my first attendance of a wedding. I thought it was absolutely beautiful to watch two people come together. I also wore an awesome dress that I love so much and had my hair in this fancy bun thing! Photo below, but my dad looks a bit grumpy. I can assure you he is not...... 

This morning I decided to paint a beach on my new canvas, testing out the paint. It started off looking really good but then my brush went wonky and it went downhill from there so now it looks like some sort of abstract art.

I’ve also got a project of building a treehouse in our backyard with Emma. Also another project of making one wall full of treasurable events in pictures. There is also a wall in my room that has tons of art which I am pretty proud of. I can’t wait for the whole wall to be covered in my art and others.

I know that I am going to have so much fun building so much more things like waterslides, treehouses, picture walls, art walls, and one day hopefully do up a kombi van (my dream car). I just want to say that so far I’m loving life.

Living, loving & taking on life!

All right I know I didn’t keep to my promise of updating often, but I am now and I have a lot to say.
At the end of my school holidays I had some visitors from Holland and they were really cool people. It was the van Dorp clan, my father's good old friend and his three kids. They stayed with us for four weeks. We showed them around and we even ended up going to Cairns with them for one week! 

In Cairns we did so much that it is hard to name them all. We mostly lay at the beach, swam in the pool and did all these fun activities including horse back riding the oldest forest in the world! I loved the hot weather and I wish I could go back and do it all over again. Sadly our Dutch friends had to leave and go back to Holland. I really miss them but we stay in contact.

The video is taken in Queensland when me and my brother saw this old piano at a market and we just started playing this song.

A few weeks later we had some more visitors and this time they were from Singapore. They stayed only for two weeks but still had lots of fun. We took them on winery tours (of course not with me...) and all of the good places to go. All of us even went to the Royal Adelaide show! I went on two rides and they both went really, really fast. Again the Singaporeans had to leave and they had to wake up at 5:30am, which is when I woke up too. Ever since that day I have said to myself to wake up earlier and go for a jog or bike ride with my dog Gemma. I really loved an early morning bike ride.

Moving to the present and towards my health, I am doing really good and living life. I have done some ice skating which was really good and fun! I am more active with Gemma (bike riding and walking). I am just feeling really, really, really good. Did I say I was feeling good?!

I still need to go for the regular check-ups and I really want to go as well (although I really do not want to go if that makes any sense....)

This week I had two scans one of which is a major one. So on Monday my dad took me to the hospital for an MRI which the nurses had to give me four injections because they couldn’t find a good vein. One Tuesday my dad took me the hospital again and my mum stayed with me thereafter, and I had a nuclear injection which I thought was awesome. I felt like becoming the Hulk... 

Lastly on Wednesday my dad took me again to the hospital to have an MIBG scan which was the important full body scan. Next week Tuesday I have a check up to see the results of the scan, and I am really nervous, although there is nothing to be nervous about I think....

Anyway! To sum up my ‘in remission state’ I am living, loving and taking on life!

I'm so excited!

I am so excited to finally get my port out. I cannot explain my ecstasy but I am also unsure. Yes it is an exciting event but it has always sort have been a safety for me. If I got sick, they would send me to the hospital and immediately they would access my port. When I got to the hospital for my treatment they would access me. So I refer my port as something good. It gave me the treatment I needed and took the cancer away.
Don’t get me wrong! I would love it to be out, but I’m still unsure. People say you should be happy, there’s nothing to be unsure about. They don’t understand. If that’s not there and my cancer comes back, which is highly unlikely, there won’t be an immediate solution. I guess I’m just gonna have to deal with that after.

I can joke about having cancer now. My friends ask each other what is the scariest experience you have ever had. They assume that my scary experience would be having cancer. I would say “I nearly fell backwards on the ice! That was scary!” Trust me on this, it is!

For now. I’m going to enjoy whatever life throws at me! Anyway I hope to update as often as I can! BYE!

Last Treatment Day

And finally the day has arrived that we all have been looking out for. Saskia took her last treatment pills today, 26 January 2015. This marks another major milestone in her journey and hopefully is a line in the sand, marking a change of times.

There will still be countless of doctor's visits and tests to be done, starting tomorrow with a bone marrow biopsy and a CT scan, followed by an MIBG scan next week. From now on she will have every month a doctor's check-up, once every 3 months a CT scan and most likely once every 6 months an MIBG scan. But no more gruelling chemo therapy or radiation treatment, no more operations and no more pills.

Saskia also need to make a decision about the removal of her port line. We thought she couldn't wait to see that thing removed, but it is slightly more difficult than that. That port has given her comfort during her treatment. Through her port all the chemo was administered, but she also got all the good stuff. Every time when there was something not right in between hospital visits, the first thing she got hooked up to was her port. She hates it, but she also is comforted by it.

Saskia is excited about the period that lays ahead. She is also a little anxious. It is like starting a new life in a different place wondering what the other kids would think about the "newcomer".
We as a family are equally excited and anxious at the same time. We have been ripped apart and brought together again, we have been through periods of pure evil together whereby we couldn't bear to be around each other and we have been through periods of pure joy and belly laughter.
Fact is that we as a family have shared an experience which will have an effect on how we live the rest of our lives. We cannot ever go back to the "normal" we had before we embarked on this journey.

This coming year will be a year whereby we all try to get our lives back in balance. There will be a new "normal". What that is and how that will look like is still to be seen, but I reckon it's gonna be awesome!

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.