Since last post we have had our trip to the snow which was exhausting and fun and magical and everything we could have hoped for. Seth and Sienna were very excited once they saw snow. All I could hear in the car was "wow" then the click click click of his camera. Seth took to the slopes on a snowboard like a pro and by the end of the week was traversing blue runs easily. He loves the snow and I have no doubt we will be back. From my perspective it was a long held dream come true. To see my boy being a carefree kid and having the opportunity to share in a family holiday. Don't ever take these simple little moments for granted. Soak them up.
You will notice a new photo above. This is my boy back the way I remember him pre-steroid. He has lost roughly 10kg and looks like amazing. He also was taken off ALL medication. This was a huge exciting step. Seth couldn't believe it. It took about 3 days before he stopped asking me whether I was sure he didn't have to take meds. He has also been given release from his isolation. He has been out and about and has seen 2 movies and been out to a restaurant for my birthday and walking around the shops and eating most foods he has been restricted from eating. He is pretty chuffed at this new found freedom. He is still not quite well enough for school yet but it's getting closer. He is still not making his own immunoglobulin so he continues to need that given by IV. He has also reached another milestone and had his final planned bone marrow aspirate. He has reached 2 years post transplant and is no longer required to have it checked. The results are clear and we couldn't be happier.
As for the little bump in the road, Seth has developed his GVHD once again. The Drs have put him back on steroids - hopefully only for a couple of weeks. He is in a lot of pain, is constantly running to the toilet and feeling nauseas. They don't think this will take him off track with him moving forward with his life, we just need to go to hospital a little more frequently and hopefully the steroids will work their magic sooner rather than later.
Seth
Tuesday, September 2, 2014
Wednesday, July 16, 2014
Our little man turns 11
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.
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.
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.
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