No News is Definitely Good News

I can't believe it has been over 6 months since my last update. I have had a few requests for an update so here we go.

Seth started back at school in the last term of 2014. We moved him and Sienna to Heritage College Sydney at the start of this year so that he could receive the extra support he needs to catch up on roughly 4 years of missed schooling. He is now in year 6 and with the care he is getting this year at school I have no doubt that he will be able to handle the switch to high school next year.

Things have been relatively smooth for Seth. The worst thing that has happened is that his vertibrae was crushed. We can't pinpoint the exact moment it happened because he has been extremely active (which means he has been hurting himself quite a bit). We think it either happened with a fall off his motorbike or a fall off a hammock. He was in a bit of pain after both falls. This has happened due to his bones being weakened from the years of being on steroids. There really was nothing that the doctors can do to help him with this kind of a break and it was just a matter of time to heal and a lot less action from our boy. He is coming to the end of having to be careful and taking things easy and he is chomping at the bit to get back on his motorbike. I wish I could just wrap him up in cotton wool for a bit longer....

Seth's teeth are also beginning to lose their calcium and are showing signs of breaking down. Thankfully the damage is being done to the baby teeth he has left and the dentist gave him a calcium toothpaste that should help his adult teeth become healthy and strong when they come through.

We went to Westmead this week and have some great news. Seth will be finishing his steroid dose in a fortnight. The doctor is very optimistic that this time the GVHD will not flare up. I am optimistic too, as his dose has dropped to 2.5mg and he has had no symptoms.

The next bit of good news that we got was about his immunization. They sucked a lot of his blood this time to test whether he is able to go ahead with his re-immunization. He also got his flu shot. In about 1 month (if the tests are good) he will be getting the first of 3 doses of 'dead' vaccines. There is a 1 month wait between each dose. Then they do a whole lot more testing and if everything is well there, then he will be given the 'live' vaccines. I should hear in about a week whether we proceed or not with the vaccinations.

Seth has made progress with his IVIG also. The last time he had an infusion was in January. This means that he has gone from needing an infusion once a month to possibly every 3 months depending on what this latest blood test shows. His last test 3 weeks ago showed him at 4.6, so I am assuming he has now dropped below 4 and will need another. But progress has been made!! Slowly but surely he is getting there.

Seth still hasn't been growing a whole lot. His endocrinologist is keeping a close eye on his growth and we are hoping that once he stops the steroids he will begin to grow again. He has missed out on 4 years of growth and the doctor is optimistic that he will begin again. If not, they will help him along with medical treatments. His next appointment regarding that isn't until July so we should have a good idea by then exactly how his body will react to being off steroids.

Well, that sums up the last 6 months of Seth's progress. We have been getting out and about and getting back into society and "normal" life. I have had the great pleasure of telling Seth (when he was trying to get out of school one day) that he is now a "normal boy" and needs to go to school like everyone else does. I can't tell you how special that moment was for me.

If you have a moment of time please check out this little boy who has stolen my heart over the internet. I'm sure you will understand why when you see him. Click the two links below. The first one is to his blog. The second is to a video of this very special little guy who is about to undergo a bone marrow transplant on 1 May and needs your prayers.

www.ourlittlehero.wordpress.com

Wear Yellow

Little bump in the road

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.

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.

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 :)

Finally Has His Lines Out

Seth Getting some air on his new track at home

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.

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.

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.

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. 

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.

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.

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.

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

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.

Bit of a drama

Sorry for the late update. Seth appears to be doing well. He is cutting down on his steroids and his eating is subsequently slowing down and he is beginning to lose his weight. The CMV is completely gone and they have taken him off the meds they used to treat it. Today he is very tired and is shivering a bit, but there is no temperature. I hope it remains that way.
Seth's feet are painful to walk on and we are off to the hospital tomorrow for a bone scan and his usual weekly check up. The doctors have said that the medicines he is on can cause pain in the feet and I'm positive that this is all that is going on. Apart from that, the doctors are keeping a close eye on everything and he is managing extremely well at this stage.
Brett, on the other hand had a fall last Monday night and has broken his heel bone in 6 places. He spent 3 days in Liverpool Hospital before being discharged with a boot on his heel. The doctors there decided to let his foot heal itself. Yesterday he had another xray and it seems the break is separating further and after getting a second opinion, the new doctor says it needs surgery. He is scheduled to have surgery this coming Monday to repair the break. At this stage we are unsure what is involved in the operation or what the outcome will be. He is seeing the operating doctor tomorrow to find out some more information.
It will be nice when we no longer have to frequent the halls of hospitals. I am so sick of hospitals now. I just hope Seth remains well over the christmas break and Brett is in less pain so we can enjoy the holidays together.

Bone Marrow Results

Seth went back into hospital on Wednesday for another check up and to get the results of his Bone Marrow Aspiration. They cannot find any trace of cancer in his bone marrow. This is the result we were hoping for. We just hope this continues to be the result over the coming months and years.
Last Friday we received a call from one of Seths doctors in regards to the virus he has at the moment (CMV). They told us that the last blood test shows that the virus had increased to over 900 (it requires treatment and admission at 1000). The team were concerned that if it was left untreated they believed it would be about 5000 by his appointment on Wednesday. My heart sank, thinking they were asking us to come into hospital. Luckily, this doctor managed to convince the hospital to fund a rare and expensive medicine to treat Seth in the hopes that it avoids another hospital stay. We haven't heard yet whether this medication has worked it's magic and the virus is being kept under control. No news is good news. If this drug doesn't work, Seth will be admitted again for treatment.
Seth is still on steroids and getting chubbier and cuter by the minute. On wednesday he weighed over 26kg - big difference to the 21kg he weighed at his skinniest! He is very tired and finds it difficult to do anything physical at the moment. He has tripped over a couple times and falls alot harder now. He hates his big tummy which keeps getting in his way and we are continuing to have wardrobe issues. "Do I look fat in this???"

GVHD

We made it home finally on Saturday 3rd November. It has been confirmed that Seth's GVHD came back and they are now loading him up with a higher dose of steroids to combat the symptoms. The plan is to wean him off these over a period of 6 weeks and wait and see what happens. If he once more becomes overwhelmed by the GVHD it is almost certain that he will have the disease for the remainder of his life. Treatment would be a steroid that he is currently on called Budenoside. It is not absorbed by the body and only treats the gut. They tried using this drug at hospital in a larger dose but unfortunately his heart rate plummeted and they couldn't continue. The reason for this is that the radiation has made the gut "leaky" and it absorbs things more easily. Over time, this should correct itself and he will be able to tolerate the Budenoside in a larger dose to treat the GVHD.
The problem at the moment is that because Seth is testing positive for CMV, the steroid he is on will help the virus to multiply. So, they are keeping weekly tabs on how fast the virus is progressing and in the end, he may need to be treated for CMV after all, which is another stay in hospital.
Today, Seth has gone to hospital for his blood tests and they are doing the first bone marrow biopsy since his transplant. This will be sent off for testing to see whether there is any sign of cancer. We should get the results in a weeks time, so there is alot of breath holding for us at the moment.
Seth is putting on his steroid weight and his cheeks are so chubby and his tummy is so distended his normal t-shirts aren't fitting him. He is having wardrobe issues - much like a pregnant woman has (which is funny for me but not for him). He is very emotional - thanks steroids - and very fussy with food which isn't easy as there are so many restrictions on his diet now. He cried for about an hour because he couldn't have twiggy sticks. Poor little thing - its funny but not. He is not going to do well today having to fast for his general anaesthetic.
I would like to thank the 2012 Study Week for the DVD they sent. It brought tears to both Seth's and my eyes listening to you all sing for him and reading the signs of encouragement. Thank you also for your generosity, we will be using the money to enjoy some family activities during the christmas school holidays.
I would also like to thank the members of Golden Grove Sunday School for their collection and all the special messages we received. We are planning a family outing with a night stay away and we will be using the money for that. Thank you also to everyone sending cards and packages. They are very encouraging and remind us of how blessed we are.

Seth back to hospital

Things were going really well with Seth at home. He put on 3kg and was doing wonderfully. Then Thursday morning I decided to pack our suitcases away in the garage as I was feeling optimistic. Big mistake. I jinxed myself and late Thursday afternoon Seth developed a temperature. So off to hospital we went. Thankfully we got a room at about 1am and I didn't have to spend the night trying to get comfortable on a chair in emergency. His temperatures dropped and it looked like it might be just one of those annoying one-off temps. They started him on antibiotics and tested for everything - the usual procedure. They found CMV (same family as chicken pox virus) which he had about 2 years ago. This has been known to re-activate after a BMT. The test is very sensitive and sometimes brings a false positive so they do a secondary test to see how much of the virus is active. We only got the results late last night and the news is good. His number is 38 and it has to be 1000 before they need to treat the virus. This is great news because treatment is a month or more stay with some potent drugs iv.
What the doctors now think is that his GVHD is getting the upper hand and they may need to treat it a little more aggressively. I am now just waiting on what their plan is. He has all the symptoms of GVHD that he had before, just not so severe. He has the runs, nausea, tiredness and temps. They are talking about letting him go home tomorrow as long as his fevers stay away. His last fever was Saturday night and they have stopped the antibiotics today. So we wait and watch to see what his body does and with any luck we get out of here soon.

Seth is home and happy

Seth came home on Saturday because his GVHD can be treated with oral medications. He arrived, tired, lethargic, weak and very skinny but very, very happy.
He has made a whole week at home and is doing very well. He has alot of medications to take, but they are doing their job very well. All his symptoms are gone and now it is just a matter of getting him to put on some weight and slowly wean him off his medication when the threat of GVHD goes away.
We went to the hospital on Wednesday and all appears to be going well.
Now that Seth is home, he is eating (which also is because he is on steroids), he is walking around the house, playing with his dog and even cooking things in the kitchen (also the steroids working their magic).
All in all, we are in a really good spot right now and we couldn't be happier having our family back together again after being separated for so long.
I am now very tired as it is all catching up with me but very content to be back where I belong. Things are certainly looking very positive as we have a new baby arriving in the family (Seth's uncle and aunty Tod and Kerry) and my cousin (Matthew Forsdike) who had terminal cancer (Melanoma) has just been cleared of all cancer thanks to a new experimental drug he was offered to trial. Happy news all around and it feels like a new beginning for our family.

We have a reason

Yesterday I found out the reason for the problems Seth has been encountering. He has Graft V Host Disease through his digestive system.
By Saturday the doctors said enough is enough with his temperatures. They made the decision to start him on steroids which drops his temperatures and is what they would do if he had GVHD. They were taking a small risk in that if it was a virus he had, then they would be taking away the body's ability to fight the virus - which is temperatures.
The temperatures dropped immediately and have been normal ever since. He still suffers from nausea and vomits here and there and he also still has the runs.
The doctors went ahead with their endoscopy and colonoscopy on Tuesday and they couldn't see anything abnormal so I was left wondering what on earth is going on and hoping it wasn't a virus after all. They took 6 biopsies and sent them to the lab for testing and we found out yesterday that GVHD is confirmed. What this means is that Seth's body is unable to absorb any nutrients from food. He has been unable to keep things down, and what little he did keep down went straight through. This accounts for the rapid weight loss, the vomiting, diahorreah and the very high temps.
Now they know what they are treating, they have changed his steroids to one that just sits in the gut as the steroids he is on at the moment have made him extremely lethargic and he is just sleeping all day long. They are increasing his immunosuppressant drug as well, just to get him past this hump. 
They also ordered a PET Scan yesterday which was quite interesting - we had to go to the adult hospital and they put radiation into his blood. I then had to leave the room because he was radioactive and sit behind lead doors for 45 minutes while he stayed there watching tv. After 45 minutes they took him in to be scanned in a big donut, then 10 minutes later it was all over and we were able to go back to our room. We have no results from the PET Scan yet and I'm not really sure what they are hoping to find or rule out. Seth's temp got to 37.5 this morning, so I am just hoping it doesn't get any higher and we will be home soon.

Things not going well

The doctors have been unable to find anything that is causing Seth's temperatures. He went up to a massive 42 degrees one night last week. Then a couple days later it appeared everything was getting better. His temps dropped on their own, his vomiting stopped and all was looking hopeful for a swift recovery. Less than 48 hours later, his temps were back and they have been increasing since. He is now remaining in the 39's with Panadol on board. The nurses arent allowing him to get any higher than the mid 39's before dosing him with panadol. He is vomiting, he is pale, weak, dizzy and the runs are back. He had a CT scan yesterday to check his chest again and they have found more spots but nothing they believe the meds he is on can't take care of. They have booked him in for a endoscopy and a possible colonoscopy next week. They believe that as they can't find any viruses or bacteria he may be suffering from GVHD. This can get into the digestive system and cause problems. We will know more next week. He is still on antibiotics, he has become very skinny, particularly in the legs and they are making him as comfortable as possible. He was a little delusional with the temps last night which actually continued to rise even with Panadol in his system. He thought I was telling him the weirdest things like "eating an apple is doom in the jungle". Weird but pretty funny all the same!