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.