So, Helen came home from the hospital two weeks ago.
She is recovering slowly, she is still feeling very dizzy and weak, and she is taking a lot of steroids to reduce the swelling in the brain, and the side effect of these are to break down the muscles, so she is losing a lot of strength and can only walk with the aid of a walking chair.
So she is spending most of her time in bed, sleeping, and getting me to fetch things for her :)
Helens mother has stayed her with us all this time and she is great help with everything.
Helen father will come here tomorrow, and so will Helens brother Matt from Cape town, and we will all spend christmas together, so that will be very nice :)
Next week we'll meet the oncologist to plan for the radtation treatment.
I read in the newspaper about the snow and the cold in Europe, and here we are having 30+ most days :)
But I miss the cold and the darkness, the real Christmas atmosphere :)
Anyways, Merry Christmas to all of you!
Take care!
Wednesday 23 December 2009
Thursday 3 December 2009
Helen is improving
Helen is improving steadily :)
Yesterday afternoon they moved her from the intensive care unit (ICU) back to the normal ward. She is still very swollen, but not in very much pain.
The surgeon has told Helen that she could be allowed to leave the hospital and come home already next Tuesday.
Later today we should be getting the laboratory-results of the analysis of the tissue that was removed in the operation.
And Helen asked me to send thanks to all of you who are following this and for all the well-wishes she has been receiving. *Hugs*
Yesterday afternoon they moved her from the intensive care unit (ICU) back to the normal ward. She is still very swollen, but not in very much pain.
The surgeon has told Helen that she could be allowed to leave the hospital and come home already next Tuesday.
Later today we should be getting the laboratory-results of the analysis of the tissue that was removed in the operation.
And Helen asked me to send thanks to all of you who are following this and for all the well-wishes she has been receiving. *Hugs*
Wednesday 2 December 2009
A long day
This morning I was at the hospital at 8, so I could talk a little bit more to Helen before the surgery. She had already gotten a mild sedative and was starting to get drowsy.
At 9.20 they rolled her away into the operating theatre.
The neuro surgeon had told us that if the surgery went without complications it would take 2 1/2 - 3 hours.
So I waited, with Helen's parents and her aunt Cooks, and it is such a difficult wait.
Lots of terrible worrying, a desire to have this over and done with, you don't want the operation to take much longer than anticipated, but you also don't want to see the surgeon come towards you much earlier than expected.
In the end the operation took only just over 2 hours, there was very little bleeding, and they managed to find the affected area easily. They got a sample of the central tumour, and the removed some of the surrounding swelling that were interfering with the nerve leading to the left side of Helen's face. In a few days we'll get the results of the testing of that tissue, and then we should maybe also start to see if some of the symptoms are reduced.
And then we'll see if they want to do any further surgery, or whether radiation will be the next step.
About an half hour after the operation ended they let us in to see Helen for a few moments. She was awake, but quite drowsy. They had to cut through her muscles in the back of the head which means lots of pain after the surgery, so they were giving her great amounts of pain killers.
Helen's mother took the below picture
After that we went home, and I had a great long nap, I haven't slept that well in a long time.
In about an hour we'll go back to the hospital and see her again :)
At 9.20 they rolled her away into the operating theatre.
The neuro surgeon had told us that if the surgery went without complications it would take 2 1/2 - 3 hours.
So I waited, with Helen's parents and her aunt Cooks, and it is such a difficult wait.
Lots of terrible worrying, a desire to have this over and done with, you don't want the operation to take much longer than anticipated, but you also don't want to see the surgeon come towards you much earlier than expected.
In the end the operation took only just over 2 hours, there was very little bleeding, and they managed to find the affected area easily. They got a sample of the central tumour, and the removed some of the surrounding swelling that were interfering with the nerve leading to the left side of Helen's face. In a few days we'll get the results of the testing of that tissue, and then we should maybe also start to see if some of the symptoms are reduced.
And then we'll see if they want to do any further surgery, or whether radiation will be the next step.
About an half hour after the operation ended they let us in to see Helen for a few moments. She was awake, but quite drowsy. They had to cut through her muscles in the back of the head which means lots of pain after the surgery, so they were giving her great amounts of pain killers.
Helen's mother took the below picture
After that we went home, and I had a great long nap, I haven't slept that well in a long time.In about an hour we'll go back to the hospital and see her again :)
Monday 30 November 2009
Friday 20 November 2009
Surgery
It's been while now since I updated here.
Two weeks ago we went to Johannesburg and spent three days there for Helen to have scans. She had a PET/CT-scan and an MRI-scan at Linksfield hospital.
It took a week before we got the interpreted result by our doctor in Durban, and as has been the case with almost every of Helens scans, the result was good but left many questions unanswered.
They have established that there are two areas with tumour activity, one 4 mm tumour almost at the centre of the brain (which was much larger in the first scan six months ago), and one more diffuse area in the periphery of the brain.
Over the last two months Helens has been getting more and more symptoms:
-numbness in the left side of the face, nose, tongue and inside of mouth
-tiredness
-dizzyness
-loss of balance
-headaches
-weightloss
The doctors couldn't find anything in the scans that could explain any of these symptoms, no swellings or buildup of pressures were visible.
Last Thursday Helen was anyway given steroids, which are supposed to reduce swelling. After five days her symptoms continued to get worse, so the dose was doubled and from then the situation at least is more stable.
Right now the plan is like this:
-We will meet the neuro-surgeon on Tuesday, on Wednesday we are going to cape Town for five days for Helens cousin Ambers wedding, and probably on Tuesday 1st December she will have brain surgery.
They will not try to do anything about the central tumour, that would be to great a risk. What they will do is inspect the area at the periphery of the brain, and try to see if it is obvious where that tumour is, and if it is non-complicated try to remove it. This operation should not be too risky.
-Then after Christmas Helen will have radiation treatment to both these areas, this will be a 10-minute procedure every weekday for 6 weeks until mid-February.
-After all of this hopefully Helen will be scanned and have no more tumours and no more symptoms :)
Two weeks ago we went to Johannesburg and spent three days there for Helen to have scans. She had a PET/CT-scan and an MRI-scan at Linksfield hospital.
It took a week before we got the interpreted result by our doctor in Durban, and as has been the case with almost every of Helens scans, the result was good but left many questions unanswered.
They have established that there are two areas with tumour activity, one 4 mm tumour almost at the centre of the brain (which was much larger in the first scan six months ago), and one more diffuse area in the periphery of the brain.
Over the last two months Helens has been getting more and more symptoms:
-numbness in the left side of the face, nose, tongue and inside of mouth
-tiredness
-dizzyness
-loss of balance
-headaches
-weightloss
The doctors couldn't find anything in the scans that could explain any of these symptoms, no swellings or buildup of pressures were visible.
Last Thursday Helen was anyway given steroids, which are supposed to reduce swelling. After five days her symptoms continued to get worse, so the dose was doubled and from then the situation at least is more stable.
Right now the plan is like this:
-We will meet the neuro-surgeon on Tuesday, on Wednesday we are going to cape Town for five days for Helens cousin Ambers wedding, and probably on Tuesday 1st December she will have brain surgery.
They will not try to do anything about the central tumour, that would be to great a risk. What they will do is inspect the area at the periphery of the brain, and try to see if it is obvious where that tumour is, and if it is non-complicated try to remove it. This operation should not be too risky.
-Then after Christmas Helen will have radiation treatment to both these areas, this will be a 10-minute procedure every weekday for 6 weeks until mid-February.
-After all of this hopefully Helen will be scanned and have no more tumours and no more symptoms :)
Friday 18 September 2009
Update on Helen's cancer
First I must thank all of you who have written encouraging messages.
I will write replies to all of you, very soon.
After Carl died me and Helen went to Ficksburg to see Helens parents for a week, and then we came back here to Durban. It took us just a few minutes to gather up all baby-related things and put in the nursery and then we closed the door.
Since then we have enjoyed having just ourselves to care for, building up a routine. I am working as usual for getmein.com and Helen is mostly resting.
We have of course a lot of thoughts about what happened, and I will write more about those later.
Last week Helen had a brain and spine MRI, and we have now seen both the neuro-surgeon and the oncologist.
The results of Helen's scan were mainly good. The small tumour seems to be completely inactive (or maybe not a tumour at all), and the larger tumour has shrunk a little bit since the last scan two months ago. But the tumour is situated in a location in the brain which makes it difficult to operate on Helen without great risk of causing other problems. So the surgeon does not want to operate unless the situation gets more critical.
Another problem is that the tumour is not displaying the precise characteristics of the type of cancer that Helen had seven years ago, so now the doctors are speculating that it might be another type of cancer (which could be both worse and better), but it makes the planning of the treatment more difficult. And they can't know for sure, unless they get a sample, but as said before, just getting that sample is associated with a great risk of damaging some part of the brain.
The doctor said this about Helens chances:
If there are 10 people in Helens position, then
-1 of them will die within a year
-at least 5 of them will die within 5 years
-only 1 of them will live longer than 10 years.
On the bright side, this is the same prognosis that they gave Helen seven years ago, except they said only one in ten would live longer than five years :)
The way the tumour would kill Helen would be if it stopped responding to treatments, and just continued to grow and the doctors were unable to stop it. So far this tumour has responded very well to chemo-therapy, so that is an encouraging sign.
So the treatment plan now is that on Monday Helen will start another round of chemo-therapy, and three weeks later she will have another round, and three weeks after that they will commence a five week radiation treatment, that will last until early December.
We had planned to go away on some holiday to get some distance, but now there will not be much time for that, plus the fact that the chemo-therapy will lower Helens immune system, and then perhaps travelling in these swine-flu times is not a good idea.
But it is still our plan to try and spend Christmas in Sweden.
I will write replies to all of you, very soon.
After Carl died me and Helen went to Ficksburg to see Helens parents for a week, and then we came back here to Durban. It took us just a few minutes to gather up all baby-related things and put in the nursery and then we closed the door.
Since then we have enjoyed having just ourselves to care for, building up a routine. I am working as usual for getmein.com and Helen is mostly resting.
We have of course a lot of thoughts about what happened, and I will write more about those later.
Last week Helen had a brain and spine MRI, and we have now seen both the neuro-surgeon and the oncologist.
The results of Helen's scan were mainly good. The small tumour seems to be completely inactive (or maybe not a tumour at all), and the larger tumour has shrunk a little bit since the last scan two months ago. But the tumour is situated in a location in the brain which makes it difficult to operate on Helen without great risk of causing other problems. So the surgeon does not want to operate unless the situation gets more critical.
Another problem is that the tumour is not displaying the precise characteristics of the type of cancer that Helen had seven years ago, so now the doctors are speculating that it might be another type of cancer (which could be both worse and better), but it makes the planning of the treatment more difficult. And they can't know for sure, unless they get a sample, but as said before, just getting that sample is associated with a great risk of damaging some part of the brain.
The doctor said this about Helens chances:
If there are 10 people in Helens position, then
-1 of them will die within a year
-at least 5 of them will die within 5 years
-only 1 of them will live longer than 10 years.
On the bright side, this is the same prognosis that they gave Helen seven years ago, except they said only one in ten would live longer than five years :)
The way the tumour would kill Helen would be if it stopped responding to treatments, and just continued to grow and the doctors were unable to stop it. So far this tumour has responded very well to chemo-therapy, so that is an encouraging sign.
So the treatment plan now is that on Monday Helen will start another round of chemo-therapy, and three weeks later she will have another round, and three weeks after that they will commence a five week radiation treatment, that will last until early December.
We had planned to go away on some holiday to get some distance, but now there will not be much time for that, plus the fact that the chemo-therapy will lower Helens immune system, and then perhaps travelling in these swine-flu times is not a good idea.
But it is still our plan to try and spend Christmas in Sweden.
Wednesday 26 August 2009
For Carl
Everything in life can change so quickly. 5 weeks and 6 days can seem a short time, but it can also feel like a life time.
Here in South Africa I don't use my mobile phone very much, most of the people I talk to are in Europe, so we use email or chats or Skype. I often don't even carry my mobile with me.
But when we came to Johannesburg with Carl, and gave our mobile numbers to the hospital so that they could contact us if something happened, I started to put my phone on the bedside table next to our bed when I went to sleep, just so that I wouldn't miss a call from them.
They called from the hospital a few times, always in the daytime, always starting the call with "your son is doing fine", and then asking us for consent to do one thing or the other.
And every morning I woke up, happy that I had woken up by myself and not by the phone.
But then one morning the phone _did_ wake me up. And the call didn't start with "your son is doing fine", instead the nurse said: "your son is not doing well, you need to come to the hospital".
Now, when I am going somewhere, I still automatically reach for my phone, thinking "I have to be available in case they try to reach us", and then it hits me that there will be no more important phone call, the worst phone call of them all has already been made, it woke me up from my sleep and it shattered my dream, in every possible way.
When we arrived at the hospital you had just died. We got to hold you for a precious hour, your body was still warm but very bruised, and your eyes were closed, those same eyes that had been peering at me so eagerly the day before. How difficult it was to take farewell of you and leave you in that room.
I loved you so much Carl, and I miss you.
There was a short time when you were recovering and they took you off the ventilator, and we for the first time could hear you cry, a small weak cry from untested vocal chords.
I would sacrifice anything, absolutely anything, if I could hear you cry like that again, anytime, night or day.
Did you cry a lot that last night, when they were trying to save your life? I hope that you had images of me and Mummy and our voices in your head, and maybe memories of the songs I sang to you in the hospital; that you knew how much we and everybody else loved you; and that perhaps it soothed you in your last moments.
Your life was short and difficult and full of pain.
Now you don't feel any pain anymore, and whereever you are, I hope you are playing nicely with your brother.
Pappa
Here in South Africa I don't use my mobile phone very much, most of the people I talk to are in Europe, so we use email or chats or Skype. I often don't even carry my mobile with me.
But when we came to Johannesburg with Carl, and gave our mobile numbers to the hospital so that they could contact us if something happened, I started to put my phone on the bedside table next to our bed when I went to sleep, just so that I wouldn't miss a call from them.
They called from the hospital a few times, always in the daytime, always starting the call with "your son is doing fine", and then asking us for consent to do one thing or the other.
And every morning I woke up, happy that I had woken up by myself and not by the phone.
But then one morning the phone _did_ wake me up. And the call didn't start with "your son is doing fine", instead the nurse said: "your son is not doing well, you need to come to the hospital".
Now, when I am going somewhere, I still automatically reach for my phone, thinking "I have to be available in case they try to reach us", and then it hits me that there will be no more important phone call, the worst phone call of them all has already been made, it woke me up from my sleep and it shattered my dream, in every possible way.
When we arrived at the hospital you had just died. We got to hold you for a precious hour, your body was still warm but very bruised, and your eyes were closed, those same eyes that had been peering at me so eagerly the day before. How difficult it was to take farewell of you and leave you in that room.
I loved you so much Carl, and I miss you.
There was a short time when you were recovering and they took you off the ventilator, and we for the first time could hear you cry, a small weak cry from untested vocal chords.
I would sacrifice anything, absolutely anything, if I could hear you cry like that again, anytime, night or day.
Did you cry a lot that last night, when they were trying to save your life? I hope that you had images of me and Mummy and our voices in your head, and maybe memories of the songs I sang to you in the hospital; that you knew how much we and everybody else loved you; and that perhaps it soothed you in your last moments.
Your life was short and difficult and full of pain.
Now you don't feel any pain anymore, and whereever you are, I hope you are playing nicely with your brother.
Pappa
Tuesday 25 August 2009
The worst news
Carl didn’t make it, his infection came back this morning and it all went very fast.
He was improving a lot, he was doing so well yesterday, I was holding him in my arms, and he was looking at me with wide open eyes. But he couldn’t fight it all.
He was improving a lot, he was doing so well yesterday, I was holding him in my arms, and he was looking at me with wide open eyes. But he couldn’t fight it all.
I don't have more words to write right now.
Friday 14 August 2009
Finally some good news!!!
Yes!
Over the last 48 hours Carl seems to have recovered from the NEC infection that he has been suffering from for 10 days. For two days last week the doctors told us he was "touch and go".
His platelets are still low, and the doctors say that "things can change very fast for someone this small".
The swelling has gone down and they have reduced most of the medicines. They have also removed the breathing machine, so now he is breathing on his own, which also at last enables him to cry.
Who knew it would feel so great to hear one's own child crying?
http://www.youtube.com/watch?v=3NPkU8X6Otk
Over the last 48 hours Carl seems to have recovered from the NEC infection that he has been suffering from for 10 days. For two days last week the doctors told us he was "touch and go".
His platelets are still low, and the doctors say that "things can change very fast for someone this small".
The swelling has gone down and they have reduced most of the medicines. They have also removed the breathing machine, so now he is breathing on his own, which also at last enables him to cry.
Who knew it would feel so great to hear one's own child crying?
http://www.youtube.com/watch?v=3NPkU8X6Otk
Wednesday 5 August 2009
Rollercoaster Ride
Last Wednesday we arrived here in Johannesburg with Carl. The doctors here at the specialist hospital considered Carl's heart problem to be less critical than the doctors in Durban thought.
So here we were initially told that they could possibly wait 5 months before operating on Carl. Then after a few days of observation they thought that he wasn't doing that well and meant that surgery should be done when he reaches 6 kilo in weight, this later fell to 3 kilos and on Monday, two days ago, the meaning was that when he gets to 2.5 kilo they need to do the surgery, which should then be in about 3 weeks, and they have been feeding him high-calorie food, so that he would gain in weight faster.
But yesterday morning, Tuesday, he was suddenly struck by an infection in his bowels, NEC (Necrotizing Enterocolitis) which happens to some premature babies. This infection is difficult to treat, and even more so for Carl, with his heart condition, and now with his low blood pressure. And Helen was ill, so I had to go and sit with him alone all day.
This morning we went there together, and he looked a bit better, but his blood pressure was very low. And the paediatrician told us that in this situation they lose as many babies as they save, and that he can get worse very fast, within hours.
We went there again this evening, and he was looking a lot better, better colour, much better values, blood saturation, blood pressure, etc. So that gave us some comfort, even if he is not even close to safe. If he survives this infection, then he will face the heart surgery, which is another big risk.
But soon he has had everything that he can get, if he wants to spring anymore surprise on us, I guess it will have to be swine flu :)
So here we were initially told that they could possibly wait 5 months before operating on Carl. Then after a few days of observation they thought that he wasn't doing that well and meant that surgery should be done when he reaches 6 kilo in weight, this later fell to 3 kilos and on Monday, two days ago, the meaning was that when he gets to 2.5 kilo they need to do the surgery, which should then be in about 3 weeks, and they have been feeding him high-calorie food, so that he would gain in weight faster.
But yesterday morning, Tuesday, he was suddenly struck by an infection in his bowels, NEC (Necrotizing Enterocolitis) which happens to some premature babies. This infection is difficult to treat, and even more so for Carl, with his heart condition, and now with his low blood pressure. And Helen was ill, so I had to go and sit with him alone all day.
This morning we went there together, and he looked a bit better, but his blood pressure was very low. And the paediatrician told us that in this situation they lose as many babies as they save, and that he can get worse very fast, within hours.
We went there again this evening, and he was looking a lot better, better colour, much better values, blood saturation, blood pressure, etc. So that gave us some comfort, even if he is not even close to safe. If he survives this infection, then he will face the heart surgery, which is another big risk.
But soon he has had everything that he can get, if he wants to spring anymore surprise on us, I guess it will have to be swine flu :)
Wednesday 29 July 2009
Carl's surgery has been postponed
Yesterday around noon we arrived here in Johannesburg, I flew and Helen travelled in the ambulance with Carl.
The hospital we are at houses the Walter Sisulu centre for peadiatric cardiology for Africa, so he can't get much better care than here.
After about an hour the paediatric cardiologist came to examine Carl with ultrasound.
Her conclusion (a bit different from the doctors in Durban) was that surgery is absolutely necessary, and if he was a bit bigger it should have been done immediately. Since he is very small the risks would be too great to do the surgery now, and since he seems to be doing ok at the moment, it would be better to wait until he grows some more, ideally wait for 6 months.
So they are keeping him here for 4-5 days for observation, and then they will reassess what to do. It could be that he stays here longer, or that he will go back to Durban and then come back here later.
The hospital we are at houses the Walter Sisulu centre for peadiatric cardiology for Africa, so he can't get much better care than here.
After about an hour the paediatric cardiologist came to examine Carl with ultrasound.
Her conclusion (a bit different from the doctors in Durban) was that surgery is absolutely necessary, and if he was a bit bigger it should have been done immediately. Since he is very small the risks would be too great to do the surgery now, and since he seems to be doing ok at the moment, it would be better to wait until he grows some more, ideally wait for 6 months.
So they are keeping him here for 4-5 days for observation, and then they will reassess what to do. It could be that he stays here longer, or that he will go back to Durban and then come back here later.
Tuesday 28 July 2009
Good news and bad news - again
Helen is doing ok, she had chemo last week, and had some effects of that during the weekend, but she is ok now.
Carl has been doing very well, his colostomy bag started working well last Thursday, and on Friday they started feeding him food (via a tube), and today he is getting food at a rate of 6 ml/hour :)
But... They have had concerns about the low levels of oxygen in his blood, so they have been giving him extra oxygen. And yesterday he had an ultrasound scan of his heart, and then they discovered that he has a birth defect on his heart called "tetralogy of fallot" which causes the blood with oxygen to mix with the blood with low oxygen. This is one of the more common heart problems for new born babies.
So tomorrow, wednesday 29 July he will be transported to Johannesburg where he will have heart surgery to correct this problem. This is a procedure with a high success rate, but of course he is very small and he is already recovering from his previous surgery.
Helen will travel with him in the ambulance, and i will catch a flight in the morning, and the surgeon will see him in the afternoon.
But we are convinced he will go through this without problem. He will be fine :)
More pictures:
http://www.pbase.com/tessajoughin/waiting_for_casper
http://www.facebook.com/group.php?gid=82357430938
http://www.facebook.com/home.php?#/album.php?aid=286365&id=790075440
Carl has been doing very well, his colostomy bag started working well last Thursday, and on Friday they started feeding him food (via a tube), and today he is getting food at a rate of 6 ml/hour :)
But... They have had concerns about the low levels of oxygen in his blood, so they have been giving him extra oxygen. And yesterday he had an ultrasound scan of his heart, and then they discovered that he has a birth defect on his heart called "tetralogy of fallot" which causes the blood with oxygen to mix with the blood with low oxygen. This is one of the more common heart problems for new born babies.
So tomorrow, wednesday 29 July he will be transported to Johannesburg where he will have heart surgery to correct this problem. This is a procedure with a high success rate, but of course he is very small and he is already recovering from his previous surgery.
Helen will travel with him in the ambulance, and i will catch a flight in the morning, and the surgeon will see him in the afternoon.
But we are convinced he will go through this without problem. He will be fine :)
More pictures:
http://www.pbase.com/tessajoughin/waiting_for_casper
http://www.facebook.com/group.php?gid=82357430938
http://www.facebook.com/home.php?#/album.php?aid=286365&id=790075440
Sunday 19 July 2009
Another update with mostly good news :)
So, Carl was born last Wednesday :)
He was doing very well, breathing on his own, and looking very good.But then they found that he was born with a small birth defect, his intestines were not fully developed, the bowel ended about 1 cm from where his "exit" should have been.
This is obviously a big problem, so on Friday, when he was only 48 hours old, he had to have surgery. It took two hours with some complications for them to give him a colostomy bag, that he will need to wear for a few months.
Right after the operation, Friday evening, he was quite weak and the doctors didn't want to say very much about his chances.
But now it is Sunday night, and he is doing well, he is breathing on his own. He is still sedated, so he is not feeling any pain from the operation. So that is good news :)
And we have more good news: On Friday morning Helen had an MRI-scan, and it showed that Helens tumours had shrunk very much. The neuro-surgeon and the oncologist both expressed great surprise that the two rounds of chemo had had such a great effect. Helen was scheduled to have brain-surgery on Saturday to remove the tumours, but this was now cancelled, and she will now instead just have two more rounds of chemo and some radiation, before they scan her again. So that is VERY good news :)
Here are some more pictures of Carl:
Wednesday 15 July 2009
Welcome Casper!
Today at 13.15 SA time, Casper was delivered :)
And from now on he will be called Carl Michael Andersson :)
He weighed 1.6 kilos, and he is breathing by himself, but he is staying in an incubator in the paediatric ICU. He is doing well and the paediatrician is optimistic.
Since they weren't sure about the pressure in Helens brain, they decided not to give her an epidural and instead she had a general anaestethic. She has now woken up and she is very sore, but very happy :)
On Friday they will scan Helen, and based on the result of that they will probably operate on her on Saturday to remove the brain tumours.
On Friday they will scan Helen, and based on the result of that they will probably operate on her on Saturday to remove the brain tumours.
Here he is :)
He is wearing a nappy for premature babies, and it is still much too big :)
And to prepare for all this, I shaved my "baby-beard" this morning :)
Before:
After:
Friday 3 July 2009
short update
I'm sorry, I haven't written anything here in a month.
It's been a bit hectic, we have had Helens mother settle here properly, and also my best friend Daniel has arrived here 10 days ago and he is staying for 2 months, and that is of course a lot of fun and a great support.
And the news are good, Helen has had a second round of chemo two weeks ago, and she has responded well, very little nausea. Casper is kicking a lot, and he has grown a lot, last monday he weighed 1.2 kilos.We now have a set date for the ceasarean, the 15th July, in 12 days, Casper will be 33 weeks then. And the day after that Helen will have a MRI scan and probably the day after that she will have brain surgery to remove the tumours.
It is great to have a date set, something we can look forward and count down the days to.
So all in all we are positive, but still, it is a lot of waiting.I'll report more soon!
It's been a bit hectic, we have had Helens mother settle here properly, and also my best friend Daniel has arrived here 10 days ago and he is staying for 2 months, and that is of course a lot of fun and a great support.
And the news are good, Helen has had a second round of chemo two weeks ago, and she has responded well, very little nausea. Casper is kicking a lot, and he has grown a lot, last monday he weighed 1.2 kilos.We now have a set date for the ceasarean, the 15th July, in 12 days, Casper will be 33 weeks then. And the day after that Helen will have a MRI scan and probably the day after that she will have brain surgery to remove the tumours.
It is great to have a date set, something we can look forward and count down the days to.
So all in all we are positive, but still, it is a lot of waiting.I'll report more soon!
Thursday 4 June 2009
Cancer and baby update
So last week Helen received chemo-therapy, Monday to Wednesday. It made her very nauseous, and on the Wednesday she started getting pressure headaches, which can be a sign of hydrocephalus (when swelling in the brain is blocking off the normal flow of fluids). The oncologist said that when the chemo-drugs are working they initially cause the tumours to swell, so he increased the level of steroids (prednasol) that Helen is taking, since they reduce swelling.
The headaches disappeared on Saturday, and since we have gradually reduced the dose of steroids, and Helen is feeling a lot better. So that is actually a good sign. But there is still a long way to go.
Last friday we had another ultrasound of Casper, and he is doing very well. And now it is also confirmed that he is a boy :) Yesterday he was 27 weeks gone in the pregnancy.
On Friday also Helens brother Matt arrived here with his wife Helen (yes, that causes a lot of confusion :) and the same day Helens mother and father arrived here, and they stayed the weekend with us, lots of fun. Helens dad went home on Tuesday, but Helens mother is going to stay with us for as long as we need her, she is a great moral support and it makes a lot of difference to get help with the practical things in the household.
The headaches disappeared on Saturday, and since we have gradually reduced the dose of steroids, and Helen is feeling a lot better. So that is actually a good sign. But there is still a long way to go.
Last friday we had another ultrasound of Casper, and he is doing very well. And now it is also confirmed that he is a boy :) Yesterday he was 27 weeks gone in the pregnancy.
On Friday also Helens brother Matt arrived here with his wife Helen (yes, that causes a lot of confusion :) and the same day Helens mother and father arrived here, and they stayed the weekend with us, lots of fun. Helens dad went home on Tuesday, but Helens mother is going to stay with us for as long as we need her, she is a great moral support and it makes a lot of difference to get help with the practical things in the household.
Wednesday 27 May 2009
Odd birthday
I forgot to write that yesterday 26th May at 11:36 was my "20 millionth minute" birthday :)
My next odd birthday will be on the 15th September at 14:16, when I will celebrate my 2000th week :)
Calculate your own odd birthdays at:
http://oddbirthdays.com/default.aspx
My next odd birthday will be on the 15th September at 14:16, when I will celebrate my 2000th week :)
Calculate your own odd birthdays at:
http://oddbirthdays.com/default.aspx
Monday 25 May 2009
First day of chemo
We couldn't wait any longer, this morning Helen got her first chemo-therapy treatment, two drugs called Epotoside and Carboplatin. She will get two more treatments, tomorrow and the day after tomorrow, and after that we wait for 3 1/2 weeks before the next round.
These drugs are very powerful, they damage all cells that grow fast (like cancer cells, but also some healthy cells), but the healthy cells recover much better than the cancer cells.
So these drugs can travel from the blood to the brain, which means that they also can travel from the blood through the placenta to the womb and this is why normally they are only given to pregnant women when there is no other alternative.
Our oncologist could only find 11 cases globally where pregnant women had been given these drugs, so there is very little experience of this. In most of the cases everything went without problems, but in a few cases the baby fell ill and had to be delivered urgently. So of course we will monitor Helen very closely.
But even if we are nervous, the overall mood is positive, there is after all a good chance that this will end well.
These drugs are very powerful, they damage all cells that grow fast (like cancer cells, but also some healthy cells), but the healthy cells recover much better than the cancer cells.
So these drugs can travel from the blood to the brain, which means that they also can travel from the blood through the placenta to the womb and this is why normally they are only given to pregnant women when there is no other alternative.
Our oncologist could only find 11 cases globally where pregnant women had been given these drugs, so there is very little experience of this. In most of the cases everything went without problems, but in a few cases the baby fell ill and had to be delivered urgently. So of course we will monitor Helen very closely.
But even if we are nervous, the overall mood is positive, there is after all a good chance that this will end well.
Tuesday 19 May 2009
Bad news again
I haven't written here in three months now, it has been busy, first with my mother visiting here in Durban, and then with us spending a month in Europe.
When we came back home to South Africa we had an ultrasound scan of Casper, and he is doing very well, very strong and kicking a lot :)
But Helen mentioned to our gyneacologist that she experienced some blurred vision and that she had some loss of strength in her left hand. He referred her to a neurologist who sent her for an MRI.
This MRI showed that the brain tumour that Helen had surgery and treatment for seven years ago, has now come back and she has two tumours in the lower back of her brain. They are fairly sure that it is the same type of tumour that she had previously, it is a relatively rare, malign type called desmoplastic medulloblastoma.
This scan (which can be seen here http://scans.untangledweb.co.za/) was on the 7th of May, and since then we have been speaking to our doctors about how to proceed. If Helen hadn't been pregnant they would have operated her they day after the MRI, and then given her radiation and chemo-therapy.
But all these things have risks for the baby, radiation is out of the question, chemo-therapy can create many problems, and surgery means a high risk of early labor (since she would have to lie on her stomach when they go into the back of her head), and since the baby is only 25 weeks gone now it would be very risky to have him born now.
If possible we would like to wait and do nothing, and have the baby delivered maybe in the 28-30th week, and then let them treat Helen aggressively.
But Helen is getting more and more symptoms; tiredness, dizzyness, vomiting, etc, so we can probably not wait that long. She is taking steroids that reduce the swelling around the tumours and they help somewhat. We will have another big conference with our doctors tomorrow, and there will probably be another MRI-scan later this week, and based on that we will decide what to do next, but it looks now like it would be chemo-therapy.
Before we had spoken to the doctors I was very shaken when I suddenly realised how much was at risk here; my wife, baby and all the plans we have made for our lives for the coming years.
But the doctors are optimistic and seem to think that it is very possible to find a way out of this that saves both Helen and the baby. So until the facts tell us otherwise, that is what I believe too.
When we came back home to South Africa we had an ultrasound scan of Casper, and he is doing very well, very strong and kicking a lot :)
But Helen mentioned to our gyneacologist that she experienced some blurred vision and that she had some loss of strength in her left hand. He referred her to a neurologist who sent her for an MRI.
This MRI showed that the brain tumour that Helen had surgery and treatment for seven years ago, has now come back and she has two tumours in the lower back of her brain. They are fairly sure that it is the same type of tumour that she had previously, it is a relatively rare, malign type called desmoplastic medulloblastoma.
This scan (which can be seen here http://scans.untangledweb.co.za/) was on the 7th of May, and since then we have been speaking to our doctors about how to proceed. If Helen hadn't been pregnant they would have operated her they day after the MRI, and then given her radiation and chemo-therapy.
But all these things have risks for the baby, radiation is out of the question, chemo-therapy can create many problems, and surgery means a high risk of early labor (since she would have to lie on her stomach when they go into the back of her head), and since the baby is only 25 weeks gone now it would be very risky to have him born now.
If possible we would like to wait and do nothing, and have the baby delivered maybe in the 28-30th week, and then let them treat Helen aggressively.
But Helen is getting more and more symptoms; tiredness, dizzyness, vomiting, etc, so we can probably not wait that long. She is taking steroids that reduce the swelling around the tumours and they help somewhat. We will have another big conference with our doctors tomorrow, and there will probably be another MRI-scan later this week, and based on that we will decide what to do next, but it looks now like it would be chemo-therapy.
Before we had spoken to the doctors I was very shaken when I suddenly realised how much was at risk here; my wife, baby and all the plans we have made for our lives for the coming years.
But the doctors are optimistic and seem to think that it is very possible to find a way out of this that saves both Helen and the baby. So until the facts tell us otherwise, that is what I believe too.
Wednesday 18 February 2009
Monday 12 January 2009
New scan
Yes, it looks just like a little blob, but there is a beating heart in there :)
6 weeks old now :)
6 weeks old now :)
Tuesday 6 January 2009
My old school
My old school (I went there when I was age 12-15), Killebäckskolan, is burning :(
http://sydsvenskan.se/lund/article403632/Vi-maste-hitta-nya-lokaler.html
So many memories I have from that place :)
http://sydsvenskan.se/lund/article403632/Vi-maste-hitta-nya-lokaler.html
So many memories I have from that place :)
Subscribe to:
Posts (Atom)