Since our last post, Ssakia has still not received her fourth treatment. The platelet count did not show any improvement. This means that her bone marrow is still recovering from the previous session. Saskia went for a bone marrow biopsy last week, which showed that her bone marrow is doing everything right, except making sufficient platelets.
The decision has now been made that irrespective of the platelet count, she will receive her fourth chemo session on Friday 27 December until Sunday 29 Decmber. The doses will be reduced and in case her bone marrow does not show any signs of improvement thereafter, she will receive a stem cell transfusion.
All-in-all relative good news as this means that Saskia feels really great for Christmas and can enjoy every moment of it. Also, because the coming session is a reduced dose, she should not feel too sick in the period thereafter and can then also enjoy the New Year party.
From our side, we wish you a Merry Christmas and we pray that you all will remember why we celebrate Christmas in the first place!
Saskia's Journey with Cancer
Tuesday 24 December 2013
Monday 9 December 2013
A Balancing Act
Since we heard that Saskia's cancer had relapsed, we all had some difficulty focusing on what matters in life. During her previous ordeal back in 2012, we managed to continue living our lives in more or less the same rhythm as before. After the initial shock, we managed to focus and continue the usual daily tasks of work, school, shopping, cooking, church, friends, etc. Our friends were instrumental during that stage and we are forever grateful for their help and understanding.
This time around, it seems different. The ordeal is the same, the friends are the same (and some great new ones too!), although we moved churches, the church is the same, we still do all of the daily choirs, but for some reason this time around it "feels" different. The chemo treatments are more severe, the hospital visits are more frequent, the recovery from the chemo treatments take longer than expected and any and every activity that we have planned had to be changed around to suit Saskia's treatment. Our lives are truly upside down at the moment.
We face some major challenges of which caring for Saskia is only one. We have three other children who all need to have an as 'normal-as-possible' life. And although we try to make part of their lives 'cancer-free', it is near to impossible. It does not matter what we do, the big C is always front of mind.
At Marcel's school they have this great program for year 9: The Journey. With this program they teach 15 year old kids how to deal with this fast paced world and form meaningful relationships. The program is concluded with a graduation and a personalised speech. When it was Marcel's turn to have his speech in front of all his journey-lads and their parents, it became very quiet. Although Marcel and us speak open and a lot about Saskia and her ordeal, his speech made us realise that his journey was (and is) a tough one as well. He could hardly say his words, but at the end he got a well deserved long lasting applause from everybody and a group hug from his lads.
When Arjen had to go to hospital for some check-up for some pain he has had for a while, he was worried that it was the same as Saskia. And when we wanted to drop Pyrene off at Calisthenics, which she usually does with Saskia, Pyrene did not want to go as she missed her big sister so much.
It is not just our children that have to cope with cancer, equally so the adults in our clan.
Melanie, Shaun and myself have been preparing for opening a restaurant, which would provide an income-opportunity for my in-laws for when they receive their PR status (hopefully early next year). After investing many a dollar and lots of hours, just before opening this place, we found out that Saskia's cancer had relapsed.
For obvious reasons, we could just not open on the planned date. The restaurant was least of our worries. If we could have known, we would never have started this place.
And then on top of all this, due to a small judgement error, Shaun had to leave the country early September for visa reasons and we are still awaiting his return (hopefully next week, to commence a new study early next year).
Our lives were totally turned upside down and there seemed no easy way out. As it turns out, with childhood cancer (as with many other life threatening circumstances), there is no easy way out. But there is a way out. As Christians we have our hope not in this world, but in Christ. To be a follower of Christ does not mean that we just follow certain principles and have a certain lifestyle - many non-Christians have similar principles and lifestyles - it means that we know that life on this earth is only temporary and that the life hereafter is without pain and suffering. Before I became a true follower of Christ I always thought that this statement was an easy way out - a cheap pep-talk to provide the individual with some hope. But through Saskia's ordeal, her and our journey, I became to know the true meaning of this. I started to question the existence of God - so I researched his existence and was proven beyond doubt that God does exist (I highly recommend "I don't have enough faith to be an atheist"). But although I now knew beyond reasonable doubt that God existed (as I do not have enough faith to be an atheist), I still struggled to understand why He allowed a little girl to have cancer. And although I still struggle with that question, the book Disappointment with God by Phillip Yancey helped me to deal with that question. However, to gain a little understanding of Gods' plan does not make this life any easier, it just makes it more acceptable.
Things have fallen a little into place though. My company Maritime Constructions initially allowed me to take all of my balance leave in one hit, which took me to the end of October. But as I was not able to get back to work (my mind was just not ready for it), they allowed me to take as long as I needed with the promise that my job would still be there upon my return. This is amazing and shows the Christian principles on which this company is build upon. It was the best that could happen to us as it allowed me to spend valuable time with my family and help in starting up our restaurant (it opened 20 November).
Friends of us have shown their great support in shaving off hair; running for hope in Singapore; organising a family fun day (a fundraiser of which the funds will be equally distributed between Little Heroes Foundation and Saskia - funds we will set aside for a trip away when Saskia's health allows); our restaurant is frequently visited by people who just want to support us (and also for the food we hope...) and the continuous support from our loyal friends, church and colleagues, with offers to help out with anything is just amazing.
Our life is still a big balancing act to try to cater for everyone's needs, but as we are comforted by the great support of a warm and caring community surrounding us, we know that we can do this.
Meanwhile, Saskia has still not completely recovered from the previous chemo session (her blood platelets still do not have the required count to start the next session). This meant that she could go to her year 6 graduation night as well as shave off Krista Hodgson's hair during Chilli Hair Shaves for Saskia Family Fun Day last Sunday, which was a great event and indeed did put a smile not only on Saskia's face but to all of our faces!
Today we heard once again that her platelet count is still not right, so we do not know exactly when the next session will begin.
Lets hope and pray that she feels ok for Christmas.
This time around, it seems different. The ordeal is the same, the friends are the same (and some great new ones too!), although we moved churches, the church is the same, we still do all of the daily choirs, but for some reason this time around it "feels" different. The chemo treatments are more severe, the hospital visits are more frequent, the recovery from the chemo treatments take longer than expected and any and every activity that we have planned had to be changed around to suit Saskia's treatment. Our lives are truly upside down at the moment.
We face some major challenges of which caring for Saskia is only one. We have three other children who all need to have an as 'normal-as-possible' life. And although we try to make part of their lives 'cancer-free', it is near to impossible. It does not matter what we do, the big C is always front of mind.
At Marcel's school they have this great program for year 9: The Journey. With this program they teach 15 year old kids how to deal with this fast paced world and form meaningful relationships. The program is concluded with a graduation and a personalised speech. When it was Marcel's turn to have his speech in front of all his journey-lads and their parents, it became very quiet. Although Marcel and us speak open and a lot about Saskia and her ordeal, his speech made us realise that his journey was (and is) a tough one as well. He could hardly say his words, but at the end he got a well deserved long lasting applause from everybody and a group hug from his lads.
When Arjen had to go to hospital for some check-up for some pain he has had for a while, he was worried that it was the same as Saskia. And when we wanted to drop Pyrene off at Calisthenics, which she usually does with Saskia, Pyrene did not want to go as she missed her big sister so much.
It is not just our children that have to cope with cancer, equally so the adults in our clan.Melanie, Shaun and myself have been preparing for opening a restaurant, which would provide an income-opportunity for my in-laws for when they receive their PR status (hopefully early next year). After investing many a dollar and lots of hours, just before opening this place, we found out that Saskia's cancer had relapsed.
For obvious reasons, we could just not open on the planned date. The restaurant was least of our worries. If we could have known, we would never have started this place.
And then on top of all this, due to a small judgement error, Shaun had to leave the country early September for visa reasons and we are still awaiting his return (hopefully next week, to commence a new study early next year).
Our lives were totally turned upside down and there seemed no easy way out. As it turns out, with childhood cancer (as with many other life threatening circumstances), there is no easy way out. But there is a way out. As Christians we have our hope not in this world, but in Christ. To be a follower of Christ does not mean that we just follow certain principles and have a certain lifestyle - many non-Christians have similar principles and lifestyles - it means that we know that life on this earth is only temporary and that the life hereafter is without pain and suffering. Before I became a true follower of Christ I always thought that this statement was an easy way out - a cheap pep-talk to provide the individual with some hope. But through Saskia's ordeal, her and our journey, I became to know the true meaning of this. I started to question the existence of God - so I researched his existence and was proven beyond doubt that God does exist (I highly recommend "I don't have enough faith to be an atheist"). But although I now knew beyond reasonable doubt that God existed (as I do not have enough faith to be an atheist), I still struggled to understand why He allowed a little girl to have cancer. And although I still struggle with that question, the book Disappointment with God by Phillip Yancey helped me to deal with that question. However, to gain a little understanding of Gods' plan does not make this life any easier, it just makes it more acceptable.
Things have fallen a little into place though. My company Maritime Constructions initially allowed me to take all of my balance leave in one hit, which took me to the end of October. But as I was not able to get back to work (my mind was just not ready for it), they allowed me to take as long as I needed with the promise that my job would still be there upon my return. This is amazing and shows the Christian principles on which this company is build upon. It was the best that could happen to us as it allowed me to spend valuable time with my family and help in starting up our restaurant (it opened 20 November).
Friends of us have shown their great support in shaving off hair; running for hope in Singapore; organising a family fun day (a fundraiser of which the funds will be equally distributed between Little Heroes Foundation and Saskia - funds we will set aside for a trip away when Saskia's health allows); our restaurant is frequently visited by people who just want to support us (and also for the food we hope...) and the continuous support from our loyal friends, church and colleagues, with offers to help out with anything is just amazing.Our life is still a big balancing act to try to cater for everyone's needs, but as we are comforted by the great support of a warm and caring community surrounding us, we know that we can do this.
Meanwhile, Saskia has still not completely recovered from the previous chemo session (her blood platelets still do not have the required count to start the next session). This meant that she could go to her year 6 graduation night as well as shave off Krista Hodgson's hair during Chilli Hair Shaves for Saskia Family Fun Day last Sunday, which was a great event and indeed did put a smile not only on Saskia's face but to all of our faces!
Today we heard once again that her platelet count is still not right, so we do not know exactly when the next session will begin.
Lets hope and pray that she feels ok for Christmas.
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