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.
Saskia's Journey with Cancer
Friday, 18 July 2014
Thursday, 26 June 2014
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.
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.
Tuesday, 10 June 2014
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.
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.
Monday, 9 June 2014
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.
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.
Thursday, 29 May 2014
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.
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.
Thursday, 22 May 2014
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.
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.
Wednesday, 14 May 2014
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.
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.
Thursday, 1 May 2014
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.
Saskia managed to forget the effects of her operation and was happily sitting along the waterside and catching many a fish.
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.
Friday, 18 April 2014
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!
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!
Monday, 14 April 2014
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 ...
Monday, 24 March 2014
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.
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!
Friday, 7 March 2014
"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.
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.
Monday, 24 February 2014
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.
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.
Monday, 10 February 2014
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.
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.
Thursday, 30 January 2014
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.
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.
Tuesday, 28 January 2014
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).
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).
Friday, 17 January 2014
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....
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....
Tuesday, 7 January 2014
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...
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.
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...
Tuesday, 24 December 2013
Merry Christmas
Since our last post, Ssakia has still not received her fourth treatment. The platelet count did not show any improvement. This means that her bone marrow is still recovering from the previous session. Saskia went for a bone marrow biopsy last week, which showed that her bone marrow is doing everything right, except making sufficient platelets.
The decision has now been made that irrespective of the platelet count, she will receive her fourth chemo session on Friday 27 December until Sunday 29 Decmber. The doses will be reduced and in case her bone marrow does not show any signs of improvement thereafter, she will receive a stem cell transfusion.
All-in-all relative good news as this means that Saskia feels really great for Christmas and can enjoy every moment of it. Also, because the coming session is a reduced dose, she should not feel too sick in the period thereafter and can then also enjoy the New Year party.
From our side, we wish you a Merry Christmas and we pray that you all will remember why we celebrate Christmas in the first place!
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!
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.
Thursday, 21 November 2013
Selective Hearing
Today Saskia had to have several check-ups and tests done to see if the chemo sessions had any negative effects on the overall functioning of several vital organs. The first was her heart - all clear.
The second was her hearing. This one had some issues. Apparently the higher frequency sounds are not so clear for her anymore. In order for her to hear these frequencies, they need to be louder. One of the potential side effects of one of the chemo drugs is (partial) loss of hearing, which is irreversible. Saskia need to have one more session with this type of chemo, which means that hearing loss may get worse. The oncologist has mentioned that they will do everything possible to reduce the doses, but the main concern is to rid the body of the cancer and if that comes with some loss of hearing, that this is a relative small price to pay. At least it confirms that Saskia has selective hearing....
The blood test of today showed that she was very low on blood platelets, so she had to have a platelet transfusion. All-in-all a busy day for Saskia with not too much good news. Once she heard that she needed a platelet transfusion, she got all upset and did not want to speak with anybody. And that's when Captain Starlight steps in. Captain Starlight's sole purpose is to bring smiles to sick children by distracting them from their illness. And the team at the Women's and Children Hospital in Adelaide is absolutely great at it. It didn't last too long before Saskia could smile again and was her usual bubbly self.
Straight after the platelet transfusion, Saskia went with her Nana into town to have a little bit of "nana time" and managed to get a huge appetite. Although she did manage to keep her food in during the last couple of days, she never ate a lot. But that all changed today. Finally her appetite is back.
Next week Tuesday she will have another blood test and if all is well, she will start her fourth round of chemo then as well. This will be given over three days with two over-night stays. Please keep her and our family in your prayers.
The second was her hearing. This one had some issues. Apparently the higher frequency sounds are not so clear for her anymore. In order for her to hear these frequencies, they need to be louder. One of the potential side effects of one of the chemo drugs is (partial) loss of hearing, which is irreversible. Saskia need to have one more session with this type of chemo, which means that hearing loss may get worse. The oncologist has mentioned that they will do everything possible to reduce the doses, but the main concern is to rid the body of the cancer and if that comes with some loss of hearing, that this is a relative small price to pay. At least it confirms that Saskia has selective hearing....
The blood test of today showed that she was very low on blood platelets, so she had to have a platelet transfusion. All-in-all a busy day for Saskia with not too much good news. Once she heard that she needed a platelet transfusion, she got all upset and did not want to speak with anybody. And that's when Captain Starlight steps in. Captain Starlight's sole purpose is to bring smiles to sick children by distracting them from their illness. And the team at the Women's and Children Hospital in Adelaide is absolutely great at it. It didn't last too long before Saskia could smile again and was her usual bubbly self.
Straight after the platelet transfusion, Saskia went with her Nana into town to have a little bit of "nana time" and managed to get a huge appetite. Although she did manage to keep her food in during the last couple of days, she never ate a lot. But that all changed today. Finally her appetite is back.
Next week Tuesday she will have another blood test and if all is well, she will start her fourth round of chemo then as well. This will be given over three days with two over-night stays. Please keep her and our family in your prayers.
Sunday, 17 November 2013
Stomach says "no...."
Wow. What a week. After Saskia came home on Monday 11 November, feeling very weak, she was re-admitted in hospital on Tuesday 12 November. The chemo had such a bad influence on her stomach, that she just couldn't keep anything in. Saskia tried her hardest, but nothing could stay down for much longer than 1 hour.
Her last real meal was on the wednesday before she started her chemo, so after 6 days of no food, you can imagine how weak she felt.
There was not a single drug, which could settle that stomach. On Friday 15 November (9 days without food), the doctors even mentioned that if this would continue for a few more days, she may have to be fed intravenously. But even that would have doubtful results as the food still has to go through the stomach.
But then suddenly, on Friday night after a small meal, she managed to keep it in and slept the whole night through. In the morning she took a little bid of breakfast and that stayed in as well! Fantastic news, so she was allowed home and although Saskia is still very weak as she lost about 3kg, she is home and relative healthy, but in real good fighting spirits.
Meanwhile, her supporters group is growing by the minute. There will be a family fun day at Mount Barker organised by our friend Krista Hodgson and owner of "Chilli Hair". She and her friend Alice Hilam have set up a fund raiser to go bald for Saskia and raise some money for a good cause. Check out their Facebook page "Chilli Hair shave for Saskia". My ex-colleague and friend Ard van der Heide ran with his family 10km for Saskia in Singapore during the "Run for Hope 2013" event. There are many others, friends, family and total strangers who help out in our daily lives as well as the start of our restaurant.
Seeing all these people work hard for Saskia is a humbling experience and certainly encourages Saskia to continue her fight in great confidence. She has to be back in hospital next Thursday for a check up and then it should be another week or so before the next round of chemo.
Her last real meal was on the wednesday before she started her chemo, so after 6 days of no food, you can imagine how weak she felt.
There was not a single drug, which could settle that stomach. On Friday 15 November (9 days without food), the doctors even mentioned that if this would continue for a few more days, she may have to be fed intravenously. But even that would have doubtful results as the food still has to go through the stomach.
But then suddenly, on Friday night after a small meal, she managed to keep it in and slept the whole night through. In the morning she took a little bid of breakfast and that stayed in as well! Fantastic news, so she was allowed home and although Saskia is still very weak as she lost about 3kg, she is home and relative healthy, but in real good fighting spirits.
Meanwhile, her supporters group is growing by the minute. There will be a family fun day at Mount Barker organised by our friend Krista Hodgson and owner of "Chilli Hair". She and her friend Alice Hilam have set up a fund raiser to go bald for Saskia and raise some money for a good cause. Check out their Facebook page "Chilli Hair shave for Saskia". My ex-colleague and friend Ard van der Heide ran with his family 10km for Saskia in Singapore during the "Run for Hope 2013" event. There are many others, friends, family and total strangers who help out in our daily lives as well as the start of our restaurant.Seeing all these people work hard for Saskia is a humbling experience and certainly encourages Saskia to continue her fight in great confidence. She has to be back in hospital next Thursday for a check up and then it should be another week or so before the next round of chemo.
Tuesday, 12 November 2013
Third Chemo Session Done!
Although the exclamation mark behind the title is meant to visualise some sort of celebration, it also means that this one was a tough one.
Luckily, Saskia had a few more days to enjoy her relative health as the PET scan could only be done last Wednesday, while her chemo was suppose to start again on Monday 4 November. However, in order to get a reliable PET scan, it can only be done when the body is not under the influence of any chemo. So her chemo was delayed with three days, which meant that she could go to school and have an "all girls out evening".
On Tuesday she went with Melanie, her Nana and two very good friend to the movies. It is great to see Saskia in such good spirits, she is so comfortable with her baldness, that even in full view of everybody in the restaurant, she just takes her hoodie off and totally looks relaxed.
She also has a good doses of self humour. The day after Halloween, she woke up, took a "selfie" and posted this on instagram "waking up with a bad hair day....". Her attitude has changed so much over the last couple of weeks and she takes this journey in comfort.
Not that there are no times of discomfort, but she is comfortable with the fight if that makes sense.
Last Thursday she went in for her third chemo session. This time she had to be admitted to hospital, as the drugs she was to receive had to be flushed out on a continuous basis. This drug was quite a nasty one and made her feel really sick from the moment she received it. Although we were allowed to go home late Monday afternoon, she is still very weak and can hardly eat or drink anything. We hope and pray that she will be able to get something in her stomach soon, otherwise we will end up in hospital within the next couple of days.
The hospital visits for chemo treatment seem to be the wrong way around: you get in when you are in relative good health and get out feeling really, really sick.
Please keep carrying her in your prayers.
Luckily, Saskia had a few more days to enjoy her relative health as the PET scan could only be done last Wednesday, while her chemo was suppose to start again on Monday 4 November. However, in order to get a reliable PET scan, it can only be done when the body is not under the influence of any chemo. So her chemo was delayed with three days, which meant that she could go to school and have an "all girls out evening".
On Tuesday she went with Melanie, her Nana and two very good friend to the movies. It is great to see Saskia in such good spirits, she is so comfortable with her baldness, that even in full view of everybody in the restaurant, she just takes her hoodie off and totally looks relaxed.
She also has a good doses of self humour. The day after Halloween, she woke up, took a "selfie" and posted this on instagram "waking up with a bad hair day....". Her attitude has changed so much over the last couple of weeks and she takes this journey in comfort.
Not that there are no times of discomfort, but she is comfortable with the fight if that makes sense.
Last Thursday she went in for her third chemo session. This time she had to be admitted to hospital, as the drugs she was to receive had to be flushed out on a continuous basis. This drug was quite a nasty one and made her feel really sick from the moment she received it. Although we were allowed to go home late Monday afternoon, she is still very weak and can hardly eat or drink anything. We hope and pray that she will be able to get something in her stomach soon, otherwise we will end up in hospital within the next couple of days.
The hospital visits for chemo treatment seem to be the wrong way around: you get in when you are in relative good health and get out feeling really, really sick.
Please keep carrying her in your prayers.
Thursday, 31 October 2013
Back to Sports and School
Last week Thursday Saskia had to have her bloods checked and it showed that there was not much substance to it. A blood and platelet transfusion was organised for Friday 25 October, but she developed a fever on the Thursday evening, so back to hospital it was. The usual procedure is that you need to be fever-free for 48 hours and on antibiotics for at least an additional 24 hours. Luckily we managed to bring the fever down quite quickly and were able to go home on Saturday afternoon with a bag full of drugs.
The real issue with the chemo treatment is not that you feel very sick during the actual administering, but the ability to fight any infection is reduced to nearly nothing in the 10-14 days following the treatment.
To have a fever does not sound as bad, but for persons being treated for cancer, it is actually pretty bad news and if not treated immediately can potentially have a deadly result. Healthy persons get infected all the time without the person actually knowing it. The body's immune system is usually taking care of all that without noticeable signs. But when your body has received a large amount of poison, the ability for the body to make healthy blood (through the bone-marrow) is next to nothing. This means that any infection, no matter how small, cannot be fought, which causes a fever and back to hospital for treatment it is.
But this week was an awesome week for Saskia. Yesterday (Wednesday) she managed to go a whole day to school and did one-and-a-half hours of calisthenics. She felt absolutely great. Today she is back in hospital for some further blood checks, but it seems that her body has produced the healthy blood stuff, so we do not believe that there is any need for additional transfusions.
Tonight we'll all dress-up for trick-or-treating and I am sure Saskia and her siblings will have a ball of a time.
Next week wednesday she will have a PET scan (which was postponed last time), followed by a 5-day intensive chemo treatment. With this treatment, she has to stay in hospital as the chemo need to be administered with 24hrs per day of liquids as well.
Please do keep Saskia and us in your prayers.
The real issue with the chemo treatment is not that you feel very sick during the actual administering, but the ability to fight any infection is reduced to nearly nothing in the 10-14 days following the treatment.
To have a fever does not sound as bad, but for persons being treated for cancer, it is actually pretty bad news and if not treated immediately can potentially have a deadly result. Healthy persons get infected all the time without the person actually knowing it. The body's immune system is usually taking care of all that without noticeable signs. But when your body has received a large amount of poison, the ability for the body to make healthy blood (through the bone-marrow) is next to nothing. This means that any infection, no matter how small, cannot be fought, which causes a fever and back to hospital for treatment it is.
But this week was an awesome week for Saskia. Yesterday (Wednesday) she managed to go a whole day to school and did one-and-a-half hours of calisthenics. She felt absolutely great. Today she is back in hospital for some further blood checks, but it seems that her body has produced the healthy blood stuff, so we do not believe that there is any need for additional transfusions.
Tonight we'll all dress-up for trick-or-treating and I am sure Saskia and her siblings will have a ball of a time.
Next week wednesday she will have a PET scan (which was postponed last time), followed by a 5-day intensive chemo treatment. With this treatment, she has to stay in hospital as the chemo need to be administered with 24hrs per day of liquids as well.
Please do keep Saskia and us in your prayers.
Tuesday, 22 October 2013
Moving on ... Feeling Blessed
Saskia started her second round of chemo last week Monday (14 October). She had to be in hospital every day for 5 days. Each day was a long day, leaving our home at 7am and only back by about 4pm. She had to be on fluids for 2 hours before the chemo session of one-and-a-half hours, followed by another two hours of fluids. Although she felt very nausea throughout the week, she managed to go home every day, which was fantastic! Even though she could hardly bear the thought of food, she actually managed to eat and drink every day.
Meanwhile she has decided that she is better off without hair. She woke up every morning with large plugs of hair just scattered around her bed and pillow which made her realise every time that she was ill. Better to have it off! her little brother Arjen of 8 years said without hesitation that he wanted to do the same, so his hair went off as well. Marcel her older brother of 15 could obviously not stay behind and decided together with our friend Luke Jones to go bald as well. Grandpa and myself had done it already a little earlier. Saskia had great fun shaving all these heads.
At the end of her chemo session last week, the weather was so good and Saskia felt really fantastic, so we organised a big bonfire for last Saturday. It was great to see all of our kids enjoy themselves so much with each other and their friends. It is moments like these that make us feel blessed and humbled by all that is happening. It is in moments like these that we feel comforted by Christ and His promise, and it is these type of moments that we will have to look back upon and remember in times of difficulty, which we know will surely come as well.
Little Sebastian, Saskia's miniature pony has received some company. We are now the proud owners of two little sheep as well. These sheep were donated by the home-groups of our church (Trinity Mount Barker). They are approximately 4-5 months old and are very tame. They came from the Hahndorf Farnbarn and have been bottle-fed for all of their short lives. We still bottle-feed them for a little longer, although this is not really needed, but it is great fun for the kids. Our youngest daughter Pyrene had the honour of naming them and now we have "Shaun" and "Fluffy". We had to promise that we do not eat them over Christmas....
Meanwhile Saskia is feeling relative good, still easily tired and she sleeps like a log, but at least she is home, strengthening herself for the next round in approximately two weeks.
Meanwhile she has decided that she is better off without hair. She woke up every morning with large plugs of hair just scattered around her bed and pillow which made her realise every time that she was ill. Better to have it off! her little brother Arjen of 8 years said without hesitation that he wanted to do the same, so his hair went off as well. Marcel her older brother of 15 could obviously not stay behind and decided together with our friend Luke Jones to go bald as well. Grandpa and myself had done it already a little earlier. Saskia had great fun shaving all these heads.
At the end of her chemo session last week, the weather was so good and Saskia felt really fantastic, so we organised a big bonfire for last Saturday. It was great to see all of our kids enjoy themselves so much with each other and their friends. It is moments like these that make us feel blessed and humbled by all that is happening. It is in moments like these that we feel comforted by Christ and His promise, and it is these type of moments that we will have to look back upon and remember in times of difficulty, which we know will surely come as well.
Little Sebastian, Saskia's miniature pony has received some company. We are now the proud owners of two little sheep as well. These sheep were donated by the home-groups of our church (Trinity Mount Barker). They are approximately 4-5 months old and are very tame. They came from the Hahndorf Farnbarn and have been bottle-fed for all of their short lives. We still bottle-feed them for a little longer, although this is not really needed, but it is great fun for the kids. Our youngest daughter Pyrene had the honour of naming them and now we have "Shaun" and "Fluffy". We had to promise that we do not eat them over Christmas....Meanwhile Saskia is feeling relative good, still easily tired and she sleeps like a log, but at least she is home, strengthening herself for the next round in approximately two weeks.
Wednesday, 9 October 2013
A body in pain
Since last post, Saskia has hardly been out of hospital. After she was finally able to get home, she was so weak and couldn't fight a simple infection as a common cold. Monday 30 September she was admited again into hospital with a high fever. Although the fever went down gradually, the oxygen levels in her blood were very low, so she had to be frequently on aditional oxygen supply. For Saskia there was nothing worse which could happen to her: being confined to a small hospital room during the school holidays. And although we can try to entertain her with movies, games, books, karaoke, etc, if you're not allowed to leave the hospital, everything just looks grim. But we are so proud of her as she was never realy too upset for too long. She always managed to pick herself up and do something to entertain herself.
Last monday (7 October) we got the good news that she was all clear to go home, but......there was still the stemcell harvesting to be done. The 7th chemo treatment will be a treatment targeting her bonemarrow and as a result will wipe it out. Without bone marrow, the body is unable to make blood. In order to overcome this, doctors can now extract so-called stem cells from the blood, keep it in the fridge and re-inject it when the body needs it. The best time to take these stem cells, is from blood which is newly created by the bone marrow, which is usually 2 weeks after the initial chemo treatment.
Saskia was allowed home on Monday and had to be back on Tuesday early morning for an operation to receive another line. The portline which she has is not large enough to extract blood in a continuous flow and as such a line is inserted in one of the larger veins in her right leg. The lines are then connected to this hi-tech centrifugal machine. The blood now flows through this machine, the stemcells are being extracted and the rest of the blood is pumped back into the body. This procedure took about 4 hours and with a little bit of luck, there are sufficient quantities of stem cells extracted so that Saskia does not have to do it again today.
This all sounds realy simple and relative easy, were it not that our own child is actually connected to three or four machines, with tubes, wires and electrodes connected to every part of her young body, with tears in her eyes and crying that it all hurts so much. It is one of the most devastating scenes which we can face as parents and one that we cannot prepare for. We can talk about physical and emotional pain, we can try to prepare for how we will react to it and we can try to find meaning in it. But when it actually happens it exceeds all expectation and any form of preparation falls short. It is heartwrenching to see your own child being so sick, going through so many painful procedures, hooked up to so many machines and getting a drugstore full of prescription drugs. There is something so wrong with this scenario. And there are no answers. Even the bible falls short of a direct answer. God never gave Job an answer as to why he had to suffer and even Jesus cried out on the cross "Why have you forsaken me?". How can we keep faith if even God's own son struggled with the same question as we do? It is because of that: even God's own son struggled with the same question as we do. Although all this pain does not make sense, faith means believing in advance what will only make sense in reverse. We know that one day, it will all make sense. And that is what we as a family hold on to.
Last monday (7 October) we got the good news that she was all clear to go home, but......there was still the stemcell harvesting to be done. The 7th chemo treatment will be a treatment targeting her bonemarrow and as a result will wipe it out. Without bone marrow, the body is unable to make blood. In order to overcome this, doctors can now extract so-called stem cells from the blood, keep it in the fridge and re-inject it when the body needs it. The best time to take these stem cells, is from blood which is newly created by the bone marrow, which is usually 2 weeks after the initial chemo treatment.
Saskia was allowed home on Monday and had to be back on Tuesday early morning for an operation to receive another line. The portline which she has is not large enough to extract blood in a continuous flow and as such a line is inserted in one of the larger veins in her right leg. The lines are then connected to this hi-tech centrifugal machine. The blood now flows through this machine, the stemcells are being extracted and the rest of the blood is pumped back into the body. This procedure took about 4 hours and with a little bit of luck, there are sufficient quantities of stem cells extracted so that Saskia does not have to do it again today.
This all sounds realy simple and relative easy, were it not that our own child is actually connected to three or four machines, with tubes, wires and electrodes connected to every part of her young body, with tears in her eyes and crying that it all hurts so much. It is one of the most devastating scenes which we can face as parents and one that we cannot prepare for. We can talk about physical and emotional pain, we can try to prepare for how we will react to it and we can try to find meaning in it. But when it actually happens it exceeds all expectation and any form of preparation falls short. It is heartwrenching to see your own child being so sick, going through so many painful procedures, hooked up to so many machines and getting a drugstore full of prescription drugs. There is something so wrong with this scenario. And there are no answers. Even the bible falls short of a direct answer. God never gave Job an answer as to why he had to suffer and even Jesus cried out on the cross "Why have you forsaken me?". How can we keep faith if even God's own son struggled with the same question as we do? It is because of that: even God's own son struggled with the same question as we do. Although all this pain does not make sense, faith means believing in advance what will only make sense in reverse. We know that one day, it will all make sense. And that is what we as a family hold on to.
Monday, 30 September 2013
On our way again..
After the surgery to give Saskia a port, she was allowed home for one night before the chemo sessions started once again. Friday 20 September was the due date. Saskia was admitted once again at the Michael Rice ward in the Women's and Children hospital for 4 nights. The treatment had its usual effects and Saskia felt in general very miserable and sick, couldn't eat much and became very weak.
The hospital is great at trying to keep the patients entertained and Melanie has decorated her room in the hospital with all kinds of 1D memorabilia to brighten her days. But the best gift of all was an anonymous person/group who managed to give her two tickets for the live concert of her favourite band! The concert was on Wednesday 25 September, which was the day after her last treatment session, so it was a bit doubtful if she could go. She came home on Tuesday 24 September feeling very weak, but she was determined to go to the concert. So on the wednesday, Melanie and I dropped both Saskia and Marcel off. Marcel was in charge of looking after her during the concert and he did an amazing job! Although they left around half an hour early, they both had an amazing time and something for Saskia to remember.
Another great moment came on Thursday. Friends of us had put some money together to buy her a little miniature pony. Miniature is a bit of an over-statement as she is approximately a meter high, but sure smaller than the "regular" ones. When we picked him up last Thursday, she could not believe her eyes. She put her hands to her head, in front of her mouth and could not say one word. This is one of the only times we have seen her speechless....The pony came with the name "Little Sebastian" and Saskia thought that was a great name for a little horse! It is an amazingly friendly animal and loves the attention it gets from all of the family as well as from Gemma our Golden Retriever.
The hospital is great at trying to keep the patients entertained and Melanie has decorated her room in the hospital with all kinds of 1D memorabilia to brighten her days. But the best gift of all was an anonymous person/group who managed to give her two tickets for the live concert of her favourite band! The concert was on Wednesday 25 September, which was the day after her last treatment session, so it was a bit doubtful if she could go. She came home on Tuesday 24 September feeling very weak, but she was determined to go to the concert. So on the wednesday, Melanie and I dropped both Saskia and Marcel off. Marcel was in charge of looking after her during the concert and he did an amazing job! Although they left around half an hour early, they both had an amazing time and something for Saskia to remember.
Another great moment came on Thursday. Friends of us had put some money together to buy her a little miniature pony. Miniature is a bit of an over-statement as she is approximately a meter high, but sure smaller than the "regular" ones. When we picked him up last Thursday, she could not believe her eyes. She put her hands to her head, in front of her mouth and could not say one word. This is one of the only times we have seen her speechless....The pony came with the name "Little Sebastian" and Saskia thought that was a great name for a little horse! It is an amazingly friendly animal and loves the attention it gets from all of the family as well as from Gemma our Golden Retriever.
Meanwhile Saskia has slowly regained a little bit of strength and started to eat again, but developed a fever early this morning. Melanie is currently with her in hospital where Saskia is undergoing many tests to determine what this fever is caused by. Due to the chemo treatment, her immune system is very low and it may take a while to recover.
Wednesday, 18 September 2013
The way forward
This week was (and still is) a big week for Saskia. Last Monday she had an MRI scan, Tuesday a bone marrow biopsy and today she received a port line. To be under complete anesthetics for both operations is not an easy thing to do. The MRI scan did not reveal anything different and the initial result of the bone marrow biopsy shows no signs of neuroblastoma there. This is a huge relief as is means that the neuroblastoma is still only localised to several areas in her neck.
The oncologists remain however quite puzzled with the fact that her C2 verterbrae shows as neuroblastoma positive. In order for a tumor to become "boney", it usually travels quite a distant through the blood and settles at a distant part in the body. This one however showed up right next to the tumor, which is not just unusual, it is actually unheard off. The MRI scan combined with a PET scan next week may provide some insight into how it may have moved through the body, but all we care about is that it is not spread far. This is good news.
However, in order to treat Saskia, the oncologist (with her team here in Adelaide and backed up by a similar team in Sydney) has decided to treat her as if it was spread throughout the body. It is now the third time that it came back and it need to be treated as if it is the most severe form of neuroblastoma, even if it does not behave like this.
So the way forward is a 4 step approach:
At this stage the oncologist does not yet know which maintenance regime will have to be followed, but it relates to "teaching" Saskia's immune system to recognise neuroblastoma and to kill it off before it develops further.
If we compare the initial journey of 1,5 years ago (which seems like both yesterday and yesteryear), with this one, than this one will be much heavier on Saskia. The chemo will be longer and more intense. This ultimately means that her hospital visits will be more frequent and she will feel generally more sick.
She is currently in hospital recovering from her surgery; tomorrow she can come home and then on Friday 20 September she will be starting her new episode on this journey.
But as it was the first time round, she will not be travelling alone! Please do keep her and everybody travelling with her in your prayers.
The oncologists remain however quite puzzled with the fact that her C2 verterbrae shows as neuroblastoma positive. In order for a tumor to become "boney", it usually travels quite a distant through the blood and settles at a distant part in the body. This one however showed up right next to the tumor, which is not just unusual, it is actually unheard off. The MRI scan combined with a PET scan next week may provide some insight into how it may have moved through the body, but all we care about is that it is not spread far. This is good news.
However, in order to treat Saskia, the oncologist (with her team here in Adelaide and backed up by a similar team in Sydney) has decided to treat her as if it was spread throughout the body. It is now the third time that it came back and it need to be treated as if it is the most severe form of neuroblastoma, even if it does not behave like this.
So the way forward is a 4 step approach:
- Induction chemo treatment. This should kill off all neuroblastoma and will be administered in 6 cycles of 3-5 days each over a period of 5 months;
- Surgery to remove the left-over tumor bits. The chemo may reduce the tumor and kill it off, but in order to be effective, all tumor bits need to be removed. So the surgery which was originally planned for this week, will still take place in similar format, but now after the chemo treatment;
- Consolidation therapy. This a chemo treatment specifically targeting the bone marrow and will be administered over a period of one month;
- Radiation therapy. In order to finish it off, the area where the original tumor started will be targeted with radiation therapy. This will be done over a period of approximately 3 weeks.
- First we spray the weeds in the garden,
- Then we dig them out;
- We then spray the surrounding areas in the garden;
- Then we burn the original spot.
At this stage the oncologist does not yet know which maintenance regime will have to be followed, but it relates to "teaching" Saskia's immune system to recognise neuroblastoma and to kill it off before it develops further.If we compare the initial journey of 1,5 years ago (which seems like both yesterday and yesteryear), with this one, than this one will be much heavier on Saskia. The chemo will be longer and more intense. This ultimately means that her hospital visits will be more frequent and she will feel generally more sick.
She is currently in hospital recovering from her surgery; tomorrow she can come home and then on Friday 20 September she will be starting her new episode on this journey.
But as it was the first time round, she will not be travelling alone! Please do keep her and everybody travelling with her in your prayers.
Saturday, 14 September 2013
Blue is Good!
As promissed, this time Saskia could get her hair blue. We all thought it was a good idea to do it now as soon as possible as last time (see our post of 9 April 2012, "The first Chemo"), she could only enjoy it for a couple of weeks.
So yesterday was the big day. Saskia was soooo excited and could hardly wait to get it done.
Her smile has not many times been any bigger than this. The before, during and after shots clearly show that she had some real fun doing this and more so this time as she managed to convince her dad to follow suit....
Today Saskia will spend most of the day at the Royal Adelaide show, where at the end of the day her little brother Arjen will play a showgame of soccer with his Hahndorf team.
Tomorrow Saskia will have a little performance with her school class in St. Marks's Lutheren Church. Not everybody there knows that she has already blue hair, but we are sure that when they see the father, they will instantly know it is her natural colour.....
Next week will be a very big week for Saskia, with daily trips to the hospital. Monday she will have an another test (MRI) followed by a bone marrow biopsy on Tuesday. This will be a day-surgery operation. During this biopsy they will also take stems cells as spare during the treatment. The drugs to be administered this time will be more aggressive to the bonemarrow and the best bone marrow you can get is usually your own.
Then on wednesday she will most likely get a port. Last time she go a PICC line, but that gave her all sorts of trouble, so the advice is this time to go with a port. This should make her life a little easier as she can even swim with that. This procedure is usually an over-night stay. On Thursday she will then get her first dose of chemo.
Once again we thank God for having us blessed with wonderful friends. It is great to have a laugh, wipe a tear, grab a shoulder, share a drink and just be ourselves with people who understand what we need.
Please do keep praying for Saskia and the rest of us (grandpa "G", Nana, Melanie, Sikko, Shaun, Marcel, Arjen and Pyrene) when we all start the next part of Saskia's journey.
So yesterday was the big day. Saskia was soooo excited and could hardly wait to get it done.
Her smile has not many times been any bigger than this. The before, during and after shots clearly show that she had some real fun doing this and more so this time as she managed to convince her dad to follow suit....Today Saskia will spend most of the day at the Royal Adelaide show, where at the end of the day her little brother Arjen will play a showgame of soccer with his Hahndorf team.
Tomorrow Saskia will have a little performance with her school class in St. Marks's Lutheren Church. Not everybody there knows that she has already blue hair, but we are sure that when they see the father, they will instantly know it is her natural colour.....
Next week will be a very big week for Saskia, with daily trips to the hospital. Monday she will have an another test (MRI) followed by a bone marrow biopsy on Tuesday. This will be a day-surgery operation. During this biopsy they will also take stems cells as spare during the treatment. The drugs to be administered this time will be more aggressive to the bonemarrow and the best bone marrow you can get is usually your own.
Then on wednesday she will most likely get a port. Last time she go a PICC line, but that gave her all sorts of trouble, so the advice is this time to go with a port. This should make her life a little easier as she can even swim with that. This procedure is usually an over-night stay. On Thursday she will then get her first dose of chemo.
Once again we thank God for having us blessed with wonderful friends. It is great to have a laugh, wipe a tear, grab a shoulder, share a drink and just be ourselves with people who understand what we need.
Please do keep praying for Saskia and the rest of us (grandpa "G", Nana, Melanie, Sikko, Shaun, Marcel, Arjen and Pyrene) when we all start the next part of Saskia's journey.
Friday, 13 September 2013
Back to square one
On Wednesday Saskia had her MIBG scan of which we discussed the results with the oncologist today. There was not a lot of good news.
The lump in her neck was confirmed to be neuroblastoma. This was not new news, as we all knew that this was most likely not some sort of virus.
The operation of two years ago left a little bid of tumor behind, which was killed off during the chemo sessions. However, this little bid has now signs of life once again.
But the most disturbing message was that the neuroblastoma has now also spread to her bones. On the MIBG scan it showed that her second verterbra from the top (C2) is now neuroblastoma positive. This means that the scheduled operation of next week is cancelled, as it would not make sense to remove one lump and leave another effected area.
Saskia will have to undergo some further tests next week to determine a baseline for further monitoring. She will also receive a "port" through which her chemo will be administered and as of Thursday next week Saskia will start with intensive chemotherapy for at least 7 month, followed by "maintenance" chemo for another 4 month.
We are basically back at square one and there are no words to describe how we feel at the moment. All we can rely on is the words of Job who answered his wife: "Shall we accept good from God and not trouble?".
Please keep Saskia and us in your prayers.
The lump in her neck was confirmed to be neuroblastoma. This was not new news, as we all knew that this was most likely not some sort of virus.
The operation of two years ago left a little bid of tumor behind, which was killed off during the chemo sessions. However, this little bid has now signs of life once again.
But the most disturbing message was that the neuroblastoma has now also spread to her bones. On the MIBG scan it showed that her second verterbra from the top (C2) is now neuroblastoma positive. This means that the scheduled operation of next week is cancelled, as it would not make sense to remove one lump and leave another effected area.
Saskia will have to undergo some further tests next week to determine a baseline for further monitoring. She will also receive a "port" through which her chemo will be administered and as of Thursday next week Saskia will start with intensive chemotherapy for at least 7 month, followed by "maintenance" chemo for another 4 month.
We are basically back at square one and there are no words to describe how we feel at the moment. All we can rely on is the words of Job who answered his wife: "Shall we accept good from God and not trouble?".
Please keep Saskia and us in your prayers.
Thursday, 5 September 2013
Can I have blue hair this time?
Yesterday we met with Dr. Michael Switajewski, the surgeon who will operate on Saskia's neck. He did it twice before with remarkable limited visable scarring remaining. He explained that although the procedure is relative standard and that he has performed these type of operations many times before, he cannot go back into the same area indefinately without the change of real lasting damage.
Both the oncologist(s) and he are of the opinion that this should be the last time. In order to ensure that he does not have to go back in again, he will remove all of the remaining glands. There are 5 areas on either side of the neck with glands and he will clean out 4 of those areas. The fifth area (or actually the first) is nearby the chin and is not considered critical to be removed.
With this complete clearing out, the oncologist hopes that, by removing the complete area where it seems to be starting, the cancer will not return. Lets hope and pray that by removing the "factory" and the surrounding area, this battle will be won.
Next week Saskia will have a complete body scan (MIBG), which should show if there are any other further areas affected and on 17 September she will have her operation.
Saskia is slowly getting anxious about the whole process. She understands that after surgery, she will have to go through chemo once again. Even though she doesn't like her curly hair, she hates to loose them again. But she remains in remarkable good spirits. She keeps finding stuff to look forward to. He very first reaction after we heard three weeks ago that IT is back was so typical for her. Her very first words were:
"poop....can I have blue hair this time?"
And yes she can!
Both the oncologist(s) and he are of the opinion that this should be the last time. In order to ensure that he does not have to go back in again, he will remove all of the remaining glands. There are 5 areas on either side of the neck with glands and he will clean out 4 of those areas. The fifth area (or actually the first) is nearby the chin and is not considered critical to be removed.
With this complete clearing out, the oncologist hopes that, by removing the complete area where it seems to be starting, the cancer will not return. Lets hope and pray that by removing the "factory" and the surrounding area, this battle will be won.
Next week Saskia will have a complete body scan (MIBG), which should show if there are any other further areas affected and on 17 September she will have her operation.
Saskia is slowly getting anxious about the whole process. She understands that after surgery, she will have to go through chemo once again. Even though she doesn't like her curly hair, she hates to loose them again. But she remains in remarkable good spirits. She keeps finding stuff to look forward to. He very first reaction after we heard three weeks ago that IT is back was so typical for her. Her very first words were:
"poop....can I have blue hair this time?"
And yes she can!
Thursday, 29 August 2013
Here we go again
Yesterday we (Melanie and I) met with Saskia's oncologist, who confirmed what we allready knew but did not want to accept. The lump in her neck is considered to be a recurrance of the neuroblastoma.
During a meeting last Tuesday night with other oncologists and surgeons, the general consensus was that it is highly unlikely that it is anything else but neuroblastoma and everybody was of the opinion that it is best to be removed now and not wait for the results of a biopsy. In case a biopsy would show that it is something else, it still has to be removed, so better to take the lot out now.
Next week wednesday we will meet with the surgeon (same one who performed the previous two operations) and we will then know more about a date for the operation. The operation will be definately after a full body MIBG scan, which will be on Tuesday 10 and Wednesday 11 September.
This means that Saskia can still perform in her finals for callisthenics on Sunday 8 September...YEAH!!
After she was cleared last year, her body had to recover from the poison it received. She was very stiff and could not realy participate in any sports.
She found this type of gymnastics march/dance which she really enjoyed (and still does) and managed to train her body back into a pre-teen aged shape and form. She felt absolutely great and when we saw her perform not too long ago in the Royalty Theatre in Adelaide, Melanie and I had to wipe a tear away as both of us had flash backs of a year ago. We were soooo proud of her.
On Sunday 8 September will be the season finals and she has been training very hard to get there.
After the operation, Saskia will have to undergo once again chemo treatment. The number of sessions is still to be determined, but this will be anywhere between 2 and 6.
We slowly come to grip with the situation. Obviously we were all angry and had and still have many questions. But we have learned throughout the last trials not to ask too many questions as there are not too many answers. More research is needed to find the "kill-switch" so to speak.
Reading back through our blog brings us some comfort. We have gone through this before with the support of our church, school(s) and employer, our family, amazing friends and our faith, so we know that we can do this once again. Although we have no say in what cards we are being dealt in this life, all we can do is accept it and have faith that God is still in control, no matter what the outcome.
During a meeting last Tuesday night with other oncologists and surgeons, the general consensus was that it is highly unlikely that it is anything else but neuroblastoma and everybody was of the opinion that it is best to be removed now and not wait for the results of a biopsy. In case a biopsy would show that it is something else, it still has to be removed, so better to take the lot out now.
Next week wednesday we will meet with the surgeon (same one who performed the previous two operations) and we will then know more about a date for the operation. The operation will be definately after a full body MIBG scan, which will be on Tuesday 10 and Wednesday 11 September.
This means that Saskia can still perform in her finals for callisthenics on Sunday 8 September...YEAH!!
After she was cleared last year, her body had to recover from the poison it received. She was very stiff and could not realy participate in any sports. She found this type of gymnastics march/dance which she really enjoyed (and still does) and managed to train her body back into a pre-teen aged shape and form. She felt absolutely great and when we saw her perform not too long ago in the Royalty Theatre in Adelaide, Melanie and I had to wipe a tear away as both of us had flash backs of a year ago. We were soooo proud of her.
On Sunday 8 September will be the season finals and she has been training very hard to get there.
After the operation, Saskia will have to undergo once again chemo treatment. The number of sessions is still to be determined, but this will be anywhere between 2 and 6.
We slowly come to grip with the situation. Obviously we were all angry and had and still have many questions. But we have learned throughout the last trials not to ask too many questions as there are not too many answers. More research is needed to find the "kill-switch" so to speak.
Reading back through our blog brings us some comfort. We have gone through this before with the support of our church, school(s) and employer, our family, amazing friends and our faith, so we know that we can do this once again. Although we have no say in what cards we are being dealt in this life, all we can do is accept it and have faith that God is still in control, no matter what the outcome.
Thursday, 22 August 2013
A stop-over?
It has been a long time since we added something to this blog and for a very good reason. The last year has been amazing for Saskia. She returned to school, her grades are fantastic, she joined calisthenics and just generally feels good. Her hair is getting long and curly and she is looking forward to high school.
The last year we have had some major changes to our family circumstances. Our household now has two more members: Saskia's grandparents from Singapore. They arrived last December and we hope that the Australian government is kind enough to let them stay forever. So with nine in the house we need to keep ourselves occupied and we are in the middle of opening a restaurant in Hahndorf in the Adelaide Hills.
All was going very well and we had grand ideas for the future.
And then there was this lump in her neck once again.
She had developed a little lump before, but the treating doctors mentioned that due to the removal of half of the lymfnodes/glands from the left side of her neck, in case of a cold, the remaining nodes would work a little harder and swell up. So nothing to worry about.
However this time it was a little different. The lump was quite substantial in size and after some tests (ultra sound and CT scan), the oncologists mentioned that it is highly likely that the neuroblastoma is back. Although there is a small chance that this is just a glandular virus, due to Saskia's history and the fact that the lump re-appeared at exactly the same spot as where the neuroblastoma originally started, the doctor said that we have to brace for another storm.
Now this just took our breath away. So many questions and so little answers:
why?
the journey was over, or was it just a stop-over?
why?
why?
she was cleared, how is this possible?
why?
why?
God, what do you want from us?
why?
why?
WHY!?
At this stage there are no answers. The fact remains that it is highly likely that Saskia's journey has to start all over again. Next week we will meet with the doctors once again and talk about the way forward. A date for an operation will have to be set, followed by some form of treatment thereafter.
All we can hope for is that it is just a bad dream and that the lump is some form of a glandular virus.
The last year we have had some major changes to our family circumstances. Our household now has two more members: Saskia's grandparents from Singapore. They arrived last December and we hope that the Australian government is kind enough to let them stay forever. So with nine in the house we need to keep ourselves occupied and we are in the middle of opening a restaurant in Hahndorf in the Adelaide Hills.
All was going very well and we had grand ideas for the future.
And then there was this lump in her neck once again.
She had developed a little lump before, but the treating doctors mentioned that due to the removal of half of the lymfnodes/glands from the left side of her neck, in case of a cold, the remaining nodes would work a little harder and swell up. So nothing to worry about.
However this time it was a little different. The lump was quite substantial in size and after some tests (ultra sound and CT scan), the oncologists mentioned that it is highly likely that the neuroblastoma is back. Although there is a small chance that this is just a glandular virus, due to Saskia's history and the fact that the lump re-appeared at exactly the same spot as where the neuroblastoma originally started, the doctor said that we have to brace for another storm.
Now this just took our breath away. So many questions and so little answers:
why?
the journey was over, or was it just a stop-over?
why?
why?
she was cleared, how is this possible?
why?
why?
God, what do you want from us?
why?
why?
WHY!?
At this stage there are no answers. The fact remains that it is highly likely that Saskia's journey has to start all over again. Next week we will meet with the doctors once again and talk about the way forward. A date for an operation will have to be set, followed by some form of treatment thereafter.
All we can hope for is that it is just a bad dream and that the lump is some form of a glandular virus.
Monday, 1 October 2012
Celebrity
Her school was really good and allowed her to sit in class with her beanie on. There were some kids who tried to take the beanie off, but a little show changed all that.
By shear coincidence the school had a request of CAMP QUALITY to perform a puppet show to explain what it is to live with cancer. At the end of the show, the organisers wanted to present an award to the school for hosting the event. Usually the award is given to the principal, but this time obviously Saskia was asked to come on stage.
Since the show and being so exposed to the rest of the school, she was treated with all the respect that little kids can display. Well done for the school and well done for Camp Quality!
At the end of this third term, her class performed a replay of the musical "Grease". Saskia played a big role and was soooo exited to participate. Melanie took care of the make up for all the girls. Finally her wig had a real purpose here...They all had a ball. It was great to Saskia and the rest of her class enjoy themselves so much. Once again, well done for ST MARK PRIMARY SCHOOL
Her hair is now getting a little bit longer so she doesn't even want to wear the beanie any more! A big surprise came a few weeks ago when the White Pages of Adelaide was delivered.
Our blog on 15 May "An amazing week" had a couple of very good uplifting moments for Saskia and one of them was the photo shoot with Chris McDermott.
Although we were told that one of the photo's would be used as the cover for the White Pages, it is something else that it actually happened. Chris McDermott is the founder of LITTLE HEROES, which is a foundation that supports children with cancer. The foundation is doing an amazing job, not only in raising money to support various projects, but also to just bring a bit of fun to these kids and their families.
Saskia had monthly check-ups with the doctor, but last week was the big one we have all been waiting for. Last Tuesday she had all kind of scans and blood tests to see how her body was healing and obviously to check if IT hasn't come back. And it hasn't! We are so grateful and thankful for this. We were all a bit worried as Saskia had those really big pains at the back of her neck, but that seemed to be her nerves growing back. So it is a good pain to have apparently....
If you have been reading our blog from the beginning, you would have noticed that on many photo's of Saskia, she was accompanied by Jaymee Blades. A month or so after Saskia got the all-clear, Jaymee's sister Ashley was diagnosed with cancer. The Blades family has been instrumental in providing support during our ordeal, Katie Blades set-up a support Facebook page FOLLOW SASKIA THROUGH HER TREATMENT and managed to regularly visit Saskia when she was in hospital. It has been surreal to hear that this family was handed the same ordeal as us. I ask you all to pray for Ashley and the Blades family in the same way you have prayed for us.
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