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.
Seth
Thursday, November 28, 2013
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.
Wednesday, March 27, 2013
Necrosis precautions
Seth had another visit to hospital today. Over the last week as the steroids have been cut down, he has developed the symptoms of graft v host disease again. Luckily this time the doctors are not allowing him to get sick and hospitalised. They have listened, taken note and are raising his steroid levels again. Seth has been getting nausea, lack of appetite, red hands, feet and ears and mouth ulcers. All the signs that his GVHD is about to take over again. His blood pressure is now well under control. He has been getting cramps in his feet and legs, he is getting bruising along his legs and feet and swelling in his feet also. This is causing him some pain, particularly at night and early morning.
As said in my previous post, Seth is having issues with his bones. Due to his symptoms, the strength of steroids and the length of time he has been on them and the need to continue with no end in sight, the doctors believe that it is almost certain that Seth will be developing AVN (Avascular Necrosis). To refresh your memory, this is when the blood flow to the bones stop - usually in the ankles, knees and hips. The bone then dies and cells come in and eat the bone away. The bones then crumble and they either need to be replaced surgically with prosthetic joints or if left, new bone forms incorrectly causing terrible arthritis. Neither of these outcomes are very enviable. Now for how they plan to help Seth: there is a drug they can give patients with AVN to prevent the bone eating cells from taking hold. They normally give it to people that have AVN. It is rare to give this to people before they have developed it. As Seth is what they called a "sitting duck" today. They have decided to give him this drug now in the hopes that when AVN hits him, his bones won't crumble as they are protected from the bone eating cells. Eventually, the blood flow will come back to the bones and what they hope will happen is that this will cause new bone to form over the dead bone and it should retain the shape of the joint and it is hoped that that will mean no arthritis or joint replacement. As with all drugs, there is a price to pay. There needs to be a dental appointment as it can cause problems in the gums. Also, it will make him pretty sick. He will need to be admitted to hospital for 3 days. He is likely to get a temperature and the doctor said he will get flu like symptoms. Not the man flu kind but the one that feels like you've been hit by a Mack truck. This is why he will be admitted so they can keep an eye on his temp and his reaction. Then a month or two later he will have a second dose of this drug, but he shouldn't have the same nasty reaction second time round.
So, big day today as he was required to have IVIG (blood product filled with immunity), long time spent talking to doctors and nurses and a lot to take in. He will be getting the fluvax next visit and we have been told to get the fluvax organised ASAP for ourselves and the girls. His dentist visit is next visit and two weeks after that, admission for AVN treatment.
As said in my previous post, Seth is having issues with his bones. Due to his symptoms, the strength of steroids and the length of time he has been on them and the need to continue with no end in sight, the doctors believe that it is almost certain that Seth will be developing AVN (Avascular Necrosis). To refresh your memory, this is when the blood flow to the bones stop - usually in the ankles, knees and hips. The bone then dies and cells come in and eat the bone away. The bones then crumble and they either need to be replaced surgically with prosthetic joints or if left, new bone forms incorrectly causing terrible arthritis. Neither of these outcomes are very enviable. Now for how they plan to help Seth: there is a drug they can give patients with AVN to prevent the bone eating cells from taking hold. They normally give it to people that have AVN. It is rare to give this to people before they have developed it. As Seth is what they called a "sitting duck" today. They have decided to give him this drug now in the hopes that when AVN hits him, his bones won't crumble as they are protected from the bone eating cells. Eventually, the blood flow will come back to the bones and what they hope will happen is that this will cause new bone to form over the dead bone and it should retain the shape of the joint and it is hoped that that will mean no arthritis or joint replacement. As with all drugs, there is a price to pay. There needs to be a dental appointment as it can cause problems in the gums. Also, it will make him pretty sick. He will need to be admitted to hospital for 3 days. He is likely to get a temperature and the doctor said he will get flu like symptoms. Not the man flu kind but the one that feels like you've been hit by a Mack truck. This is why he will be admitted so they can keep an eye on his temp and his reaction. Then a month or two later he will have a second dose of this drug, but he shouldn't have the same nasty reaction second time round.
So, big day today as he was required to have IVIG (blood product filled with immunity), long time spent talking to doctors and nurses and a lot to take in. He will be getting the fluvax next visit and we have been told to get the fluvax organised ASAP for ourselves and the girls. His dentist visit is next visit and two weeks after that, admission for AVN treatment.
Thursday, February 21, 2013
It's been a while
Sorry for my lapse in blog writing, time seems to be slipping through my fingers and I seem to lack the energy to keep up with it at the moment.
Seth is doing well, he has been going to hospital as usual for check ups and things on the cancer front are all positive looking. He is scheduled for another bone marrow biopsy on 12 March and once again there is no need to expect anything untoward in those results.
Seth is on high doses of steroid to control his GVHD and there are serious side effects from being on this type of medication for extended periods of time at such high doses. One that have the doctors concerned at the moment is the effect on Seth's bones. Steroids are known to cause a problem called a vascular necrosis which is when the blood flow to the bones is affected and the end result is bone death. There appears to be no signs that this is the case for Seth, but they are certainly very wary of this condition due to the pain Seth has been getting in his joints (which is where the necrosis sets in)
We have found that his foot pain increases with his steroid dose and decreases accordingly. He was unable to walk apart from a slow shuffle at his worst. This has thankfully subsided and he is now getting about easily and with little to no pain.
The other thing they have found is that (via an MRI) Seth has brittle bones. He underwent a bone density test yesterday to see just how much they are affected. We are still waiting on those results.
The other concern they have is with his blood pressure which read a massive 163/100 yesterday. This is due to steroids and Seth has begun a medication to help level out his blood pressure.
Apart from the above, he is a happy little boy who, in his own words "just wants to be normal". I have put on the school teacher hat and sit with him for a couple of hours each morning to do school work. He loves Dynamo the magician and spends some time every day trying out magic tricks and illusions. He spends time teaching our dog Ruby tricks. She now knows how to catch and how to drop dead when we say bang. He is trying to teach her how to skate on a skate board. Quite a challenge but he is up to the task. Seth is also practising his touch typing skills and his guitar. As he is on steroids once more, he is an avid helper in the kitchen at meal times and has to know what we are having for dinner once breakfast has been consumed. He is a little fatty boom bah again and his hair has grown in dark tight ringlets - quite the opposite to the straight blonde hair he was born with. He has become quite the little bookworm and reads books quite quickly now.
Seth is still has to be isolated from people and crowds. Steroids will make any virus or bacteria 10 times worse if he catches anything so we have to be very vigilant with his health and who is is in contact with. We still need to take care of the food he eats which is much to his disgust (thanks steroids).
The girls are going well, being back at school. Everything seems fairly settled on the home front for them as long as we are home together. They are happy and healthy and bubbling with life. We couldn't ask for more.
Seth is doing well, he has been going to hospital as usual for check ups and things on the cancer front are all positive looking. He is scheduled for another bone marrow biopsy on 12 March and once again there is no need to expect anything untoward in those results.
Seth is on high doses of steroid to control his GVHD and there are serious side effects from being on this type of medication for extended periods of time at such high doses. One that have the doctors concerned at the moment is the effect on Seth's bones. Steroids are known to cause a problem called a vascular necrosis which is when the blood flow to the bones is affected and the end result is bone death. There appears to be no signs that this is the case for Seth, but they are certainly very wary of this condition due to the pain Seth has been getting in his joints (which is where the necrosis sets in)
We have found that his foot pain increases with his steroid dose and decreases accordingly. He was unable to walk apart from a slow shuffle at his worst. This has thankfully subsided and he is now getting about easily and with little to no pain.
The other thing they have found is that (via an MRI) Seth has brittle bones. He underwent a bone density test yesterday to see just how much they are affected. We are still waiting on those results.
The other concern they have is with his blood pressure which read a massive 163/100 yesterday. This is due to steroids and Seth has begun a medication to help level out his blood pressure.
Apart from the above, he is a happy little boy who, in his own words "just wants to be normal". I have put on the school teacher hat and sit with him for a couple of hours each morning to do school work. He loves Dynamo the magician and spends some time every day trying out magic tricks and illusions. He spends time teaching our dog Ruby tricks. She now knows how to catch and how to drop dead when we say bang. He is trying to teach her how to skate on a skate board. Quite a challenge but he is up to the task. Seth is also practising his touch typing skills and his guitar. As he is on steroids once more, he is an avid helper in the kitchen at meal times and has to know what we are having for dinner once breakfast has been consumed. He is a little fatty boom bah again and his hair has grown in dark tight ringlets - quite the opposite to the straight blonde hair he was born with. He has become quite the little bookworm and reads books quite quickly now.
Seth is still has to be isolated from people and crowds. Steroids will make any virus or bacteria 10 times worse if he catches anything so we have to be very vigilant with his health and who is is in contact with. We still need to take care of the food he eats which is much to his disgust (thanks steroids).
The girls are going well, being back at school. Everything seems fairly settled on the home front for them as long as we are home together. They are happy and healthy and bubbling with life. We couldn't ask for more.
Wednesday, January 23, 2013
2 steps forward,1 step back.
Seth had his bone marrow aspirate last Wednesday and the results show no cancer visible. After Seth's visit to hospital on Wednesday we were told to cease his last remaining steroid. Happily this was done but on Thursday Seth complained about having ulcers in his throat. I put it down to his ng tube rubbing on his throat. Friday morning he thought his throat was closing over and was in a fair bit of pain. Friday night he had one bout of diahorrea but no temp. Saturday morning he woke up with a temp, feeling nauseas and sore throat. I took him to Campbelltown hospital which is the closest to us and what the doctors at westmead request that I do so he can get medical attention earlier. As usual a battery of tests were taken and his symptoms were trying to be managed as best as they could. His diahorrea worsened, the soreness from his throat came up into his mouth. They were red swollen angry looking spots and he continued to vomit. On Sunday, he was having hallucinations with a medication that he has had thousands of times with no side effects. He thought it was funny because my hair would turn purple, I would get old and wrinkly, my eyes would glow, my face would grow fat or long, my nose would turn into a pig nose. Thankfully it happened to anyone's face and it wasn't just me. It lasted about 15 minutes and then was gone. It happened again later that day with the same meds but hasn't happened since. Seth has some strange things happen to him! On Monday, he seemed to be improving a little and the docs were leaning towards a virus. He then developed a rash which was put down to heat rash but it wouldn't fade and it got worse. By Tuesday, the doctors at Westmead wanted him with them and I think the doctors at Campbelltown were relieved to have him go where the experts are. His rash has progressively worsened, but the temps have gotten lower, he cannot stomach anything other than water so hasn't eaten since Thursday. We are now tucked up in Westmead with the BMT looking after Seth and the doctor this morning has said that they just need to rule out CMV. Once that is done, they will put him on steroids to treat GVHD. They have said Sienna's cells are very feisty and they are still trying to attack Seth's cells. The good news is that they are attacking any Leukaemia cells that might be floating around as well. So the plan is to go back on steroids and wean off them quite quickly again and see what happens again when he comes off them. They have said eventually, her cells will get used to him, it's just taking a little longer to happen. Seth's blood group has now changed to Siennas blood group which gave the Campbelltown team a bit of a shock (hehehe). Well, hopefully we should be out of here by the end of the week
Wednesday, January 9, 2013
Merry Christmas and Happy New Year to all! We have been fortunate enough to have Seth home this entire time. We have enjoyed a quiet holiday period as there is not much we can do with Seth being immune suppressed and Brett with his foot injury. It has been lovely catching up with friends and family. Brett came through his op well with plates and pins in place permanently and is well on his way to recovery.
I just returned from Seth's weekly hospital visit today and most things seem to be going well. They have found arthritis in his ankle from the bone scan. However his pain is getting worse as time goes by so they did extra bone blood tests (dont ask me how they do that or what they look for) and an xray today and have booked him in for an MRI. He is hobbling about like a little old man and it's sad to watch him struggle. Unfortunately the arthritis is here to stay and they believe it's due to the chemo and steroids as there was no evidence of it in all his tests before his transplant. Unfortunately the side effects of treatment are now starting to catch up to Seth and it is a matter of dealing with them as they appear. The other thing is that one of the chemo's he has taken can shorten the calf muscles and now that he is up walking around, they are being stretched and can cause pain for about a year.
Seth is having a bone marrow aspirate next week to test for cancer. There is no reason to believe that at this stage they will find anything.
Seth is still very weak and tired and lacks energy. He finds it very difficult to walk and has found that reading is a way for him to escape and to pass the time. He is still very chubby, in fact he gained further weight since last post despite dropping one of his steroids. After losing a kilo, he steadily gained a kilo a week until he reached 32kgs. The doctors have put this down to the second steroid he is taking, which is not supposed to be absorbed, but is in fact being absorbed because his gut hasn't recovered from the radiation yet. He has now completely finished his pred steroid and from today is halving the dose of his second steroid. Progress is being made and it's encouraging to see these medications no longer being needed by him.
I just returned from Seth's weekly hospital visit today and most things seem to be going well. They have found arthritis in his ankle from the bone scan. However his pain is getting worse as time goes by so they did extra bone blood tests (dont ask me how they do that or what they look for) and an xray today and have booked him in for an MRI. He is hobbling about like a little old man and it's sad to watch him struggle. Unfortunately the arthritis is here to stay and they believe it's due to the chemo and steroids as there was no evidence of it in all his tests before his transplant. Unfortunately the side effects of treatment are now starting to catch up to Seth and it is a matter of dealing with them as they appear. The other thing is that one of the chemo's he has taken can shorten the calf muscles and now that he is up walking around, they are being stretched and can cause pain for about a year.
Seth is having a bone marrow aspirate next week to test for cancer. There is no reason to believe that at this stage they will find anything.
Seth is still very weak and tired and lacks energy. He finds it very difficult to walk and has found that reading is a way for him to escape and to pass the time. He is still very chubby, in fact he gained further weight since last post despite dropping one of his steroids. After losing a kilo, he steadily gained a kilo a week until he reached 32kgs. The doctors have put this down to the second steroid he is taking, which is not supposed to be absorbed, but is in fact being absorbed because his gut hasn't recovered from the radiation yet. He has now completely finished his pred steroid and from today is halving the dose of his second steroid. Progress is being made and it's encouraging to see these medications no longer being needed by him.
Subscribe to:
Posts (Atom)