Seth enjoyed his 11th birthday yesterday. It was a nice quiet one at home. Thank you to everyone who has wished him well on his birthday. He was pretty overwhelmed by the response on Facebook, so thank you all.
We visited the hospital on Monday for an appointment with Seth's Endocrinologist. He has some concerns regarding Seth's growth. He has grown 7cm in 4 years and is the size of an 8 year old. He has now come off his steroids completely so they are hoping that he will begin to grow again. They did a battery of blood tests and an X-ray of his hand which will give them his bone age. This will show them whether he can catch up to what he should be or whether he has just lost the last 4 years of growing. It will also enable them to estimate his adult height. He checks his height almost every day so hopefully he will see something happening soon.
He is off all but 3 of his medicines now. None of them are to repress his immune system any longer. Big steps ahead! There are no signs of GVHD any longer. His skin is still not great but his gut seems to be fine.
Also on Monday they needed to give him an infusion of Immunoglobulin (a boost to his immune system) as he is still not making it himself. They have retested his immune functions and hopefully this time it shows some improvement and we can finally relax the isolation. I hope to get the results by the end of this week.
We are off to the snow this Sunday for a week and we are all really looking forward to a great time together. Seth talked about seeing snow all the time when he was in hospital and now we get to make his dream a reality. It felt like we would never get to this happy point but we have and it's the best feeling. I can't wait to see the look on his face when he sees the snow for the first time.
The hospital has arranged a tutor to help us out with Seth's schooling. She is an amazing help and I feel more optimistic about Seth returning to school under her guidance. He still kicks up a fuss and fights doing work every step of the way but that's pretty normal I guess which is all we want these days:)
His steroid weight is just slipping off him now and I see those big dimples on his cheeks winking at me all the time now. My little boy is really starting to resemble himself again. I don't know whether he will get his blonde hair back again but I'm sure glad to see those dimples again.
Seth
Wednesday, July 16, 2014
Tuesday, May 20, 2014
Central lines are gone!!
Only good news to share with this post. We have come leaps and bounds in the last couple months and it is so encouraging and such a relief.
Seth was having trouble with his central line. The flesh was beginning to grow out of the opening in his chest and it was starting to bleed and weep. He was suffering from a lot of pain - so much so that I couldn't even touch his chest around the hole without him gasping in pain. He asked the doctors whether he could get the lines removed and they agreed that it was time for this to happen as long as Seth was prepared to have blood tests and cannulas (when needed). Seth wholeheartedly and happily agreed as he just wanted the lines gone. Tuesday last week they were removed with no complications and today we remove the dressing from his chest. This is a huge step for him and the future is looking bright. We are back in hospital tomorrow for a check up and blood test so we shall see how he goes getting a needle now.
As far as his medication goes, he has been able to drop yet another immune suppressant drug with no sign of the GVHD returning. We hope this result continues. They will be testing his immunity (somehow they can do it with a blood test) tomorrow and we will know whether we can start to relax a little on the isolation he has been needing for the past 2 years. He will need to be re-immunised before they will allow him to be completely free from isolation so I'm sure I will get a little more information in regards to that shortly.
When Seth had his lines removed they also tested his bone marrow for cancer and once again it has come back clear.
Seth is full of energy these days and I am getting glimmers of the boy he once was. He is doing flips and walking on his hands and jumping off anything he can climb. He is doing his crazy dances and getting on his motorbike and flying over jumps. It is a blessing to see.
As far as school work goes, he is causing me a lot of grief. It is a battlefield every time we sit down to do work. He gets upset easily when his brain doesn't work the way it used to anymore. He is frustrated that he cant remember the things he learnt the day before. I just don't know how he is going to cope when he returns to school.
We are getting excited about our snow trip now as it gets closer and closer and we braved the Aldi snow sale and got everything we needed for a great week together. Seth and the girls can't stop talking about it and counting the days down on the calendar. Life is pretty good right now :)
Seth was having trouble with his central line. The flesh was beginning to grow out of the opening in his chest and it was starting to bleed and weep. He was suffering from a lot of pain - so much so that I couldn't even touch his chest around the hole without him gasping in pain. He asked the doctors whether he could get the lines removed and they agreed that it was time for this to happen as long as Seth was prepared to have blood tests and cannulas (when needed). Seth wholeheartedly and happily agreed as he just wanted the lines gone. Tuesday last week they were removed with no complications and today we remove the dressing from his chest. This is a huge step for him and the future is looking bright. We are back in hospital tomorrow for a check up and blood test so we shall see how he goes getting a needle now.
As far as his medication goes, he has been able to drop yet another immune suppressant drug with no sign of the GVHD returning. We hope this result continues. They will be testing his immunity (somehow they can do it with a blood test) tomorrow and we will know whether we can start to relax a little on the isolation he has been needing for the past 2 years. He will need to be re-immunised before they will allow him to be completely free from isolation so I'm sure I will get a little more information in regards to that shortly.
When Seth had his lines removed they also tested his bone marrow for cancer and once again it has come back clear.
Seth is full of energy these days and I am getting glimmers of the boy he once was. He is doing flips and walking on his hands and jumping off anything he can climb. He is doing his crazy dances and getting on his motorbike and flying over jumps. It is a blessing to see.
As far as school work goes, he is causing me a lot of grief. It is a battlefield every time we sit down to do work. He gets upset easily when his brain doesn't work the way it used to anymore. He is frustrated that he cant remember the things he learnt the day before. I just don't know how he is going to cope when he returns to school.
We are getting excited about our snow trip now as it gets closer and closer and we braved the Aldi snow sale and got everything we needed for a great week together. Seth and the girls can't stop talking about it and counting the days down on the calendar. Life is pretty good right now :)
Finally Has His Lines Out Seth Getting some air on his new track at home  |
Monday, March 17, 2014
Chugging along
Thanks to everyone who continually shows an interest in how Seth is progressing. We are very grateful to have such caring and thoughtful people around us.
Seth is doing well. We are fortunate to have a wonderful hospital system that will come out to visit us weekly for the line flushes and blood tests. This means that we have gone from having to be at hospital weekly to only having to go monthly. They promised me a break this year and they are true to their word. This is a huge burden lifted of my shoulders and I am very grateful.
Seth is still dropping his medications bit by bit. He is now on a dose of 5mg of steroids (which felt like it would never happen) and he is stable on it. He is losing his chubby cheeks and his cuddly tummy and it is really uplifting to see how excited he becomes when his pants fall down around his ankles because his tummy is shrinking.
This week we are dropping another immuno suppressant drug and we hope he has no adverse effects.
He has had a lot of niggling minor health problems but nothing detrimental. Life is running smoothly at the moment. We spend the week doing home schooling as best we can and try to spend the weekend having fun. As Seth is still immuno suppressed all the rules about being out in public and eating out apply. He is awaiting the day he can eat some KFC.
Seth has of late had quite a bit of leg pain. This affects his ability to sit still and concentrate on school work and we are struggling to get through what has been set. The drs are doing tests of his bones to see what is causing it but they believe its probably due to his medication.
The last bone marrow biopsy came back clear!!! Another is set to happen in the next month or so.
Seth had some psychological testing done as I was noticing some difficulty in his learning. I assumed it was to do with his medication as he had started a new one. I was told that radiation and the strong chemo that Seth had can cause some learning difficulties. So the testing was done. Turns out the radiation and chemo has done some damage to his ability to absorb information. This is long term and he will not recover from this. He finds it difficult to keep up when listening to someone talking or explaining. This will affect him at school when the teacher talks. He will be stuck on trying to understand the first sentence when the teacher is up to the 5th sentence. He is good however at visual learning so this needs to implemented. Fortunately there are program's in place just for the oncology kids who are affected in this way. I have been assured that he will be supported by the hospital all the way up to getting a job. This is some comfort but in the meantime I am on a steep learning curve as to how I and his distance ed teacher can help him out the best way we can.
We have taken the leap of faith and booked a holiday for winter to Thredbo. Seth has always wanted to see snow, so we are going to stay in it for a week. This is really exciting for all of us and it gives us something to look forward to. We haven't done anything like this up until now because we always have that threat of Seth getting sick. It is still there but I think we feel more confident and positive about the future. This year for us is about having fun together as a family. We've gone too long without it and its time for a change and some optimism.
Seth is doing well. We are fortunate to have a wonderful hospital system that will come out to visit us weekly for the line flushes and blood tests. This means that we have gone from having to be at hospital weekly to only having to go monthly. They promised me a break this year and they are true to their word. This is a huge burden lifted of my shoulders and I am very grateful.
Seth is still dropping his medications bit by bit. He is now on a dose of 5mg of steroids (which felt like it would never happen) and he is stable on it. He is losing his chubby cheeks and his cuddly tummy and it is really uplifting to see how excited he becomes when his pants fall down around his ankles because his tummy is shrinking.
This week we are dropping another immuno suppressant drug and we hope he has no adverse effects.
He has had a lot of niggling minor health problems but nothing detrimental. Life is running smoothly at the moment. We spend the week doing home schooling as best we can and try to spend the weekend having fun. As Seth is still immuno suppressed all the rules about being out in public and eating out apply. He is awaiting the day he can eat some KFC.
Seth has of late had quite a bit of leg pain. This affects his ability to sit still and concentrate on school work and we are struggling to get through what has been set. The drs are doing tests of his bones to see what is causing it but they believe its probably due to his medication.
The last bone marrow biopsy came back clear!!! Another is set to happen in the next month or so.
Seth had some psychological testing done as I was noticing some difficulty in his learning. I assumed it was to do with his medication as he had started a new one. I was told that radiation and the strong chemo that Seth had can cause some learning difficulties. So the testing was done. Turns out the radiation and chemo has done some damage to his ability to absorb information. This is long term and he will not recover from this. He finds it difficult to keep up when listening to someone talking or explaining. This will affect him at school when the teacher talks. He will be stuck on trying to understand the first sentence when the teacher is up to the 5th sentence. He is good however at visual learning so this needs to implemented. Fortunately there are program's in place just for the oncology kids who are affected in this way. I have been assured that he will be supported by the hospital all the way up to getting a job. This is some comfort but in the meantime I am on a steep learning curve as to how I and his distance ed teacher can help him out the best way we can.
We have taken the leap of faith and booked a holiday for winter to Thredbo. Seth has always wanted to see snow, so we are going to stay in it for a week. This is really exciting for all of us and it gives us something to look forward to. We haven't done anything like this up until now because we always have that threat of Seth getting sick. It is still there but I think we feel more confident and positive about the future. This year for us is about having fun together as a family. We've gone too long without it and its time for a change and some optimism.
Thursday, November 28, 2013
Some promising developments
To update you on the PET scan, it showed that the GVHD was right through Seth's digestive system. So it confirmed that they are fighting the right thing with nothing else to be worried about. He is booked in for a scope and colonoscopy for 6th Dec but I think this is just a further confirmation of what they already know.
Finally we have had some developments! Seth has been able to drop his steroid dose to 10 and below for the first time since transplant! It's very promising for all of us and its hard not to get too excited about such a huge breakthrough (for us).
His chubby little cheeks have ever so slightly thinned out and it has given us all the boost that we needed. We can see the light at the end of the tunnel now.
Seth had another bone marrow aspirate done last Tuesday and the results are once again clear!!!
We had an appointment yesterday to meet with the oncology psychologist to go over Seth's learning ability. I have had some concerns with his memory lately and I brought it up with the bone marrow team expecting to hear it was to do with the medication he was on. I was told however that the high doses of radiation and chemo he had pre transplant can cause permanent memory damage and learning difficulties. So, this appointment was arranged to judge his strengths and weaknesses. I should get a report in a couple of weeks time. Hopefully it contains good news. If it shows some damage then I have been told that there are support systems in place just for these oncology kids who have been affected by radiation and chemo. They support them all the way through school and help them get a job doing what they enjoy and where their strengths lay.
These next two weeks can't go quick enough for me now. I prefer knowing what the news is, that way I can either relax or can tackle the problem. It's the not knowing that is the hardest part for me.
Finally we have had some developments! Seth has been able to drop his steroid dose to 10 and below for the first time since transplant! It's very promising for all of us and its hard not to get too excited about such a huge breakthrough (for us).
His chubby little cheeks have ever so slightly thinned out and it has given us all the boost that we needed. We can see the light at the end of the tunnel now.
Seth had another bone marrow aspirate done last Tuesday and the results are once again clear!!!
We had an appointment yesterday to meet with the oncology psychologist to go over Seth's learning ability. I have had some concerns with his memory lately and I brought it up with the bone marrow team expecting to hear it was to do with the medication he was on. I was told however that the high doses of radiation and chemo he had pre transplant can cause permanent memory damage and learning difficulties. So, this appointment was arranged to judge his strengths and weaknesses. I should get a report in a couple of weeks time. Hopefully it contains good news. If it shows some damage then I have been told that there are support systems in place just for these oncology kids who have been affected by radiation and chemo. They support them all the way through school and help them get a job doing what they enjoy and where their strengths lay.
These next two weeks can't go quick enough for me now. I prefer knowing what the news is, that way I can either relax or can tackle the problem. It's the not knowing that is the hardest part for me.
Wednesday, September 18, 2013
Over a year since transplant
My apologies for not keeping up to date on the blog. I have had a few requests lately for an update on Seth's progress. Life has been blessedly boring so there hasn't been much progress to write about as you will read further, we are stuck. So here goes.
In August, Seth passed his 1 year anniversary since his transplant. This is great because one year post transplant means that if the cancer reoccurs, they can actually do something to help him. If it reared its ugly head before this time was up, there wouldn't have been much hope left.
Our life is very routine at the moment which has its good points and its bad points. We are still required to attend hospital every week. Wednesday is usually our day there. Every month he needs to get a blood product called IVIG which is a little boost that his immune system needs. Every couple months he has a bone marrow aspirate. So far so good with no cancer detected. It would be a very rare thing to find cancer whilst someone has graft v host disease. So that is the bright side of him suffering through this side effect of transplant.
The last time he had a bone marrow aspirate done, we arrived at 7:30am and weren't taken through until 5:30pm. You can imagine what a little boy on steroids faced that day waiting with no food in his belly since dinner the night before. Not an easy day. We arrived home around 8pm and by 3am the following morning he had a temperature. So, back to hospital we went.... long story short, we spent a few days in hospital and it seems it was a post GA temp - nothing serious but boy were we tired!
He is still on a high dose of steroids and we just seem to be unable to wean him off them. Every time we drop past a certain point, the graft v host disease flares up again. It is incredibly frustrating as our life is in a type of holding pattern. We are unable to move forward and all the boring rules post transplant still apply as they have to keep his immune system suppressed. Any illness can have devastating consequences so we continue to keep him as isolated as we can while trying to give him a childhood - even so, it feels like his childhood is just slipping away from him and us. He is now 10 years old and he has been battling this since he was 6. That's a long time for a kid.
Seth is still on many meds and they are constantly trying to change them around to see if anything will help him with his GVHD. At this stage, even one of the strongest immunosuppressant drugs is not helping. In my visit to hospital today, the doctors are getting frustrated with the lack of progress. He is now booked in for a PET scan next Thursday so they can get a better look at what is going on. They are now checking for chronic diseases to make sure they only need to concentrate on GVHD and they haven't missed anything. They also have him booked in for another scope if they feel they need to investigate further. As they continue to depress his immune system, he is prone to getting illnesses easy and infections easy and it is a constant worry for us.
He has two ingrown toenails which is another weird thing that can happen post transplant. They give him a fair bit of pain when they flare up but the doctors won't remove them because it can become a source of infection.
As far as Seth's bones go, he has had another round of treatment for the prevention of bone collapse if he develops avascular necrosis. He has another due next month and that should wrap that little problem up. It won't stop the necrosis occurring but it should stop his bones collapsing if it hits him.
Other than that, life consists of home schooling, every other free day. Seth still fights bouts of nausea, tiredness, aches and pains, diarrhoea, skin problems etc. He is not able to do school work everyday because of this but we are trying our best to give him a decent education. Seth has not attended school for nearly two years straight and he didn't have much time at school before as he got sick half way through year 1. This will be another battle he will have to fight when he is well enough to return to school.
His growth is still stunted. Taylah is towering over him and Sienna has bypassed him as well. He is still carrying extra weight because of the steroids and he is still hairy from the cyclosporan. He is shy because of his appearance and says that he wishes he could just look like himself again.
So, we are not moving forward in any way, shape or form, but on the bright side, we are not moving backwards either. We just keep plodding on.
In August, Seth passed his 1 year anniversary since his transplant. This is great because one year post transplant means that if the cancer reoccurs, they can actually do something to help him. If it reared its ugly head before this time was up, there wouldn't have been much hope left.
Our life is very routine at the moment which has its good points and its bad points. We are still required to attend hospital every week. Wednesday is usually our day there. Every month he needs to get a blood product called IVIG which is a little boost that his immune system needs. Every couple months he has a bone marrow aspirate. So far so good with no cancer detected. It would be a very rare thing to find cancer whilst someone has graft v host disease. So that is the bright side of him suffering through this side effect of transplant.
The last time he had a bone marrow aspirate done, we arrived at 7:30am and weren't taken through until 5:30pm. You can imagine what a little boy on steroids faced that day waiting with no food in his belly since dinner the night before. Not an easy day. We arrived home around 8pm and by 3am the following morning he had a temperature. So, back to hospital we went.... long story short, we spent a few days in hospital and it seems it was a post GA temp - nothing serious but boy were we tired!
He is still on a high dose of steroids and we just seem to be unable to wean him off them. Every time we drop past a certain point, the graft v host disease flares up again. It is incredibly frustrating as our life is in a type of holding pattern. We are unable to move forward and all the boring rules post transplant still apply as they have to keep his immune system suppressed. Any illness can have devastating consequences so we continue to keep him as isolated as we can while trying to give him a childhood - even so, it feels like his childhood is just slipping away from him and us. He is now 10 years old and he has been battling this since he was 6. That's a long time for a kid.
Seth is still on many meds and they are constantly trying to change them around to see if anything will help him with his GVHD. At this stage, even one of the strongest immunosuppressant drugs is not helping. In my visit to hospital today, the doctors are getting frustrated with the lack of progress. He is now booked in for a PET scan next Thursday so they can get a better look at what is going on. They are now checking for chronic diseases to make sure they only need to concentrate on GVHD and they haven't missed anything. They also have him booked in for another scope if they feel they need to investigate further. As they continue to depress his immune system, he is prone to getting illnesses easy and infections easy and it is a constant worry for us.
He has two ingrown toenails which is another weird thing that can happen post transplant. They give him a fair bit of pain when they flare up but the doctors won't remove them because it can become a source of infection.
As far as Seth's bones go, he has had another round of treatment for the prevention of bone collapse if he develops avascular necrosis. He has another due next month and that should wrap that little problem up. It won't stop the necrosis occurring but it should stop his bones collapsing if it hits him.
Other than that, life consists of home schooling, every other free day. Seth still fights bouts of nausea, tiredness, aches and pains, diarrhoea, skin problems etc. He is not able to do school work everyday because of this but we are trying our best to give him a decent education. Seth has not attended school for nearly two years straight and he didn't have much time at school before as he got sick half way through year 1. This will be another battle he will have to fight when he is well enough to return to school.
His growth is still stunted. Taylah is towering over him and Sienna has bypassed him as well. He is still carrying extra weight because of the steroids and he is still hairy from the cyclosporan. He is shy because of his appearance and says that he wishes he could just look like himself again.
So, we are not moving forward in any way, shape or form, but on the bright side, we are not moving backwards either. We just keep plodding on.
Friday, June 7, 2013
3 years on...
On the 10th June 2010 Seth was diagnosed with Leukaemia. Three years have passed - some filled with joy, some filled with pain and disappointment. One third of his life has been taken up by this disease so far. Sienna wasn't old enough to have any memories of family life before Seth became sick. I cannot wait to show her the freedom that good health will give our lives. Unlike many families we have met along this journey, we still have our beautiful child by our side and that is all that matters. I count myself lucky.
We went to hospital on Wednesday for a check up. Seth has been gradually getting worse as his steroids have been dropping. He has been nauseas, tired and had no appetite. Thankfully the doctors didn't hesitate to put his dosage back up. It is getting tiring waiting for his GVHD to go for Seth and us. We are stuck in this limbo. Not going forward, but thankfully not going back. His last bone marrow test was negative for cancer. We are looking forward to getting on with our lives and taking a big family holiday. We just can't plan anything at the moment. The journey is trying and tiring and I am becoming impatient for its end.
We went to hospital on Wednesday for a check up. Seth has been gradually getting worse as his steroids have been dropping. He has been nauseas, tired and had no appetite. Thankfully the doctors didn't hesitate to put his dosage back up. It is getting tiring waiting for his GVHD to go for Seth and us. We are stuck in this limbo. Not going forward, but thankfully not going back. His last bone marrow test was negative for cancer. We are looking forward to getting on with our lives and taking a big family holiday. We just can't plan anything at the moment. The journey is trying and tiring and I am becoming impatient for its end.
Wednesday, May 8, 2013
Bisphosphinate done
We have been in hospital since Monday for Seth to get the medicine that should protect his bones from crumbling when and if necrosis hits him. We were expecting some flu like symptoms from the infusion but we were happily surprised that he came through with absolutely no reaction. He is feeling completely normal and we should be able to go home tomorrow (Thursday) if his blood work comes back normal. We have another bone marrow test coming up soon and there is no reason to suspect they will find cancer.
Seth is still struggling with GVHD unfortunately. He is still hobbling around like a little old man at times with his painful joints.
We have progressed to mostly every fortnight check ups rather than weekly. This is a lovely occurrence and it feels as though life is beginning to regain some of its normality. Seth still cannot attend school so we are enrolling him in long distance education until we get the go ahead from the doctors. He still needs to be kept isolated as his immune system continues to be lowered while we wait for Sienna's feisty bone marrow to settle in.
We have moved house from a 500 sqm block to a 7 acre lot and even though walking is difficult for Seth, he is now able to get out and about on a little buggy we bought for the kids. He is one very happy little lad with all that room to play and ride. It is nice to watch him just be a kid.
Life has been busy and stressful with the move and the constant worry over necrosis. Now the medicine has been infused and that concern been lifted, hopefully we can find a new rhythm and settle a little further into life as it should be and begin putting cancer behind us a little further.
The last hurdle to overcome is GVHD and hopefully that will be dealt with shortly.
Seth is still struggling with GVHD unfortunately. He is still hobbling around like a little old man at times with his painful joints.
We have progressed to mostly every fortnight check ups rather than weekly. This is a lovely occurrence and it feels as though life is beginning to regain some of its normality. Seth still cannot attend school so we are enrolling him in long distance education until we get the go ahead from the doctors. He still needs to be kept isolated as his immune system continues to be lowered while we wait for Sienna's feisty bone marrow to settle in.
We have moved house from a 500 sqm block to a 7 acre lot and even though walking is difficult for Seth, he is now able to get out and about on a little buggy we bought for the kids. He is one very happy little lad with all that room to play and ride. It is nice to watch him just be a kid.
Life has been busy and stressful with the move and the constant worry over necrosis. Now the medicine has been infused and that concern been lifted, hopefully we can find a new rhythm and settle a little further into life as it should be and begin putting cancer behind us a little further.
The last hurdle to overcome is GVHD and hopefully that will be dealt with shortly.
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