T+161

160 days since transplant day!!!! How has that happened?!!?! I am very sorry it has been so long since I have last provided an update. It wasn’t my intention to leave things so long, but being at home is just total brilliant chaos!!

After coming home everything was nice and settled for the first week. We went back to Newcastle for a check up and again they were happy with him. He was booked in to have his apheresis line taken out on the Friday of the following week. However, the line was not causing any problems and Seth was still requiring blood tests regularly. Also although his need for blood and platelet transfusions had reduced we were still not confident he would not start dropping again. So, the decision was made to postpone the operation to have the line out for a bit longer just to be sure….

However, on the Monday of the very next week his line was accessed for blood tests and shortly after Seth approached his dad with his t-shirt up saying “my line is leaking”. He was totally unfazed by the blood coming out of his line and going everywhere. Upon inspection the line had split near the top where it entered Seth’s body. We knew that this would be unrepairable so prepared ourselves for a trip to Newcastle to have it out.

First stop though is always the local hospital so that they can do initial checks and liaise with Seth’s consultant in Newcastle with regards to a plan. Also he was put on antibiotics immediately in case an infection had got into the line through the break. 24 hours later we were back on the road to Newcastle. The next day the line was taken out and luckily because Seth had not had a temperature he was able to return home the next afternoon. For the first time in a long time we had a fairly straight forward trip to a hospital, no unexpected long-term stays. BRILLIANT!!!

back in newcastle waiting for the op

school work !

the line- the blue clamp next to his skin is stopping the line from bleeding.

ready for the op!

All gone!!!

Being at home is fantastic for all of us. However, Seth is now more of an energetic, curious 5-year-old than he ever has been. He wants new challenges and new experiences like any young child, which can sometimes be difficult when he still has to remain isolated from other children and busy places. We have been pursuing home schooling via the school he is registered with and whilst waiting for that I have been trying to home school him so that he does not fall behind his peers. I think he will have enough to deal with socially when he finally goes to school so we like to try to reduce any other sources of stress for him.

Learning numbers playing Bingo

making bread

fine motor skills practice poking pipe cleaners through a sieve

learning about dinosaurs

collecting leaves , learning about autumn

  

making trees with a straw and water paints

Health wise he has been great. No illnesses or temperatures so far. So we are really pleased with that! Immunology wise we are still waiting for confirmation as to whether or not the Thymus is working. It is quite a source of stress for me at the moment. My understanding is that there is no definitive way to confirm whether or not anyone has a functioning Thymus, you just have to wait for ‘educated’ T cells to appear. This can be monitored via 3 things – which I cannot now remember the specifics. However, one is increased T cell numbers. This last week Seth’s T cell numbers have doubled – but this can happen also if he has in infection that he is fighting – then the uneducated T cells would multiply. Also there is a marker in the blood that is monitored in percentage – this has decreased significantly over the past few weeks which does indicate a working thymus, but again it is not conclusive at this time. The third way is by detecting the educated T cells in the blood. At present there is very little evidence to suggest educated T cells. So we continue to wait. Seth having GVHD for so long prior to this transplant may simply delay the Thymus sending out new educated T cells. Or there may be irreparable damage. Wait and See – rubbish!

He has managed to get rid of Rhinovirus which is promising. He is still positive for Adeno virus but is keeping it low level, so again that is positive. His skin is fantastic! Really clear. We have managed to be able to reduce the steroids right down again and we have not seen the GVHD rash in a few weeks!

IMG_9015

As a parent in this situation you have to manage your own emotions and stresses, trying to stay realistic and not to allow optimism to overcome you. With Seth being better in himself than he has ever been it is difficult to prevent myself from getting too comfortable, forgetting that this is not over yet. Also you find yourself trying to manage other people’s expectations as well. Everyone historically knows Seth as a child with physical struggles because of his health. They knew him as a child that did not run about, lacked confidence and tired easily. Now they see this normal (albeit small) 5-year-old energetic cheeky boy running around, so its difficult for us to highlight that we still do not know if he will be ok.

When we arrived in Newcastle in January this year, Hugo was only just 3 months old……he turns 1 in 3 days!!! What a year!



  

T+127

So, it’s been 230 days since Seth was admitted to hospital this time. So much has happened in those 7 and a half months. I think we have a different child! A child that is happier, more content, taller, healthier and who feels like everyday is less of a battle.  

Then and now. The photo on the left is the day Seth was admitted to hospital. The one on the right is now.

 

We still have a journey ahead of us and no one knows yet what challenges we will face. We still do not know if Seth’s body is able to educate the new cells, we still do not know what the GVHD in his skin is going to do or if it will respond to treatment. But we have come so far. 

Seth’s consultant gave a good analogy- “you can put the champagne in the fridge, but don’t drink it”. We’re not at the ‘job done’ stage yet. 

However, there has been one development this week……

http://youtu.be/_T1sCqGAkus
Yep, we have been so lucky as to be able to bring Seth home!!! We said our goodbyes to Newcastle

 

The Angel of the North that has been watching over Seth all this time


 

Ready to go!!

  

Hmmm not aure where we are going to put all these toys!!!!

Our connection with Newcastle is far from over. We have to go back to Newcastle weekly to start with because he needs that monitoring. The doctors are still not 100% happy. But they are happy enough that he can finally come and live in his home with the rest of us! 

Some of our friends decorated the house for Seth’s welcome home! 

  
So what is the first thing you do after 7 and a half months away from home?

http://youtu.be/gIKI1Q-e11U

Play your drums and….

   
 Sir I your fire engine with a gold fireman’s helmet on of course!!!

Although he is home he still remains in isolation. He is not allowed any contact with children, and only contact with well adults. He’s allowed to go out but not to busy or enclosed spaces, and he is not yet back to school. In England yesterday was the start of the school year for most people. But there was no obligatory photo of Seth in his school uniform. Hopefully we will be posting that in the new year if all goes well! 

Seth is so excited to be home. He discovered toys in the play room that he hasn’t seen in a long time, got to see our family dog, play with his brother, and simply sit on our sofa eating popcorn watching his favourite TV programmes! 

And then of course SLEEP IN HIS OWN BED!!! 

  
Whilst daddy, who has also not been home in 230 days, got to put some storage together for the toys so the playroom could be safe and ready for the boys in the morning!!

 

Important construction

  

Argh the mess!!!!

  

Finished and ready to play!!! Phew!!!

 

We know our journey is far from over. It is not the first time we have come home hoping for a bright and easy future for our boy. But today is good, we will deal with tomorrow when it arrives! 

Thank you to all the staff at the Great North Children’s Hospital in Newcastle Upon Tyne and the Bubble Foundation – you guys got us this far and kept us together as a family. Thank you. 

Today: T+112!!

It’s all a bit strange at the moment, time seems to be going so quick, Hugo is 10 months old! He was only 3 months when we first embarked on our Newcastle leg of Seth’s journey. My 12 months of maternity leave is due to end in a months time. Luckily I have been able to apply for addition time off, so i am not returning to work until January. That will give us time to return home and start living as a proper family again!

Over the past few weeks Seth has really settled into living with us all again. However, he does ask about going home quite a lot. He misses his home and his friends. I am at home at the moment getting the house ready for his return and when we speak on FaceTime he asks for a tour of the house and to look at his favourite toys!

With regards to his eating we are seeing an improvement! He is now eating reasonably well. Most days he eats lunch and dinner. It is still only small amounts however its regular eating. He still struggles psychologically though. He will say that his tummy is rumbling. But then when sat with the food in front of him he uses a number of different distractions techniques to delay putting the food in his mouth. Once he does have that first bite he eats well. We just keep eating our food and let him go through this process. It does seem to be getting a little shorter.

Immunology wise we are pleased that his bone marrow is still showing 100% donor. This means that all the cells in his bone marrow are Nik’s. They test this every month to see the strength of the graft. So far so good!!!
This week we have noticed that his cheeks are a little red and a patch on his arm. This looks like a bit of skin Graft Versus Host disease again. He has been given some topical steroid cream to put on the effect areas and we hope that will be enough. Over the past few weeks they have weaned him off the majority of his anti-rejection (immune suppressant) medication. He was on Tacrolimus, Mycophenolate Mofetil and Prednisolone. He is now only on 2.5mg of Prednisolone on alternate days. This is the smallest amount of Prednisolone he has been one ever!!!! As a restful we are continuing to see he face appear as his cheeks reduce and hopefully his belly will continue to reduce so he gets a much more normal shape.

Virus wise things are looking good. He has had 2 weeks of negative results and he is not longer on medication to treat them. We are just waiting for the all important 3rd negative! This is important as 3 negatives is what they want for Seth to be considered free of the virus – although it may come back later. Although the hope is now that he is not on any significant anti-rejection drugs his immune system will be able to fight these virus’ itself – another excellent out come of the 3rd negative result! FINGERS CROSSED!!

Were getting closer and closer to the time where we will find out whether or not Seth’s Thymus is educating the new T cells. Its something I am thinking about daily. Seth is doing so well at the moment I just want to enjoy it. All his life he has been tired and moaned a lot. Since this transplant he is like a normal boy. No moaning, no winging, loads of energy. It has made us realise that for the past 5 years he has probably felt rubbish all day, everyday. It makes me even more proud of him, as despite that he has had a go at everything put before him. I just don’t want to get too comfortable and then find out we have to get him through a Thymus transplant. If it comes back that the Thymus IS working I can start to relax! FINALLY!!!!!

Seth has been booked in to have his Apheresis line removed on 18th September, this is a big thing for us as this normally happens just before you are allowed to go home! Fingers crossed things continue to go well and we can be home in just a few weeks!!! PLEASE!!!!


  
  

T+89

A little while since my last post. Apologies for that.

However, we can now say Seth is no longer an in patient at The Great North Children’s Hospital!!! He was discharged on Thursday last week so is permanently living at the halfway house near the hospital with Daddy, Hugo and me!!!!


  
  
Seth is settling back into family life well and has FINALLY started to eat. It is very small amounts and not everyday, but he is eating and has a good relationship with food. He is no longer getting anxious about sitting at the table or being around food. Last week we did homemade Pizza which he loved making! This was the start of him eating more, he did not eat his slice, but did eat the ham off the top. A couple of days later he ate the meat and gravy part of Shepherd’s Pie, and today he has had some yorkshire pudding, vegetables and gravy! We are really pleased with his progress. Its hard not to pay attention to him eating, we have to turn away to hide our big grins! He seems to have started eating more as we have stopped the intravenous nutrition, as he is now feeling a bit more hungry. He still has a 14 hour feed of high calorie milk over night, as we cannot risk him losing weight.


  
Being at the halfway house more and school finishing for the summer holidays means that we have had a bit more time to do things. We have been to a local centre for disabled children called the Alan Shearer Centre (founded by a local footballer/soccer player). Here we can hire out sensory rooms or their hydrotherapy pool, and they have an outside play area which, so far, has not had any children playing on it so Seth has been able to use it. We are not at the stage where he can use the hydrotherapy pool just yet. But we used the sensory room which was great for both boys. They had a brilliant time.


  
  
  
  
  
Medically Seth is doing really well, hence the discharge! He is still positive for the HHV6 virus but the level is still low so it’s not a major concern at the moment. He is no longer positive for the Adeno virus, although that has come back once. He is still on the drug that treats both of these so hopefully they will remain under control until his immune system can deal with them itself.

Seth’s skin is amazing still. The GVHD rash appears to have gone and we have been able to stop one of the anti-rejection drugs. He is still on steroids as a management but only at 2.5mg on alternate days – the lowest he has ever been on! He is on a third anti rejection drug called Tacerolimus but he will stay on that for a while after transplant. The next step is to ‘stress’ test him (medically) to see if he is able to produce his own steroid. Because he has been on steroids for so long (about 4 years) his body may have stopped producing it – which means he would need to remain on oral steroids at the current level to match what the body naturally produces.

These next pictures I found this week. They are of Seth 1 year ago! What an amazing transformation!  
 All in all his progress has been brilliant so far. It is hard not to get over excited about his future, but we are certainly more relaxed about things. The next major worry is whether or not his thymus will educate the T cells his bone marrow is now producing. If it does that will be a MASSIVE relief for Nik and I. If not we have to look at a Thymus transplant at Great Ormond Street Hospital. I don’t know what that entails at the moment as I am hoping it will not be necessary. They will test his T cells around 120 days post transplant so see what is happening. So another 34 days to wait!

Today: T+68

Sorry it has been a little while! I started writing this post, and then my laptop had a falling out with the wifi. However, they are now communicating again so i can continue!!

In the last couple of weeks we have had one brilliant change……we have been allocated a halfway house. Hugo and I are now living at the house. Seth is allowed to be at the house all day, unless he needs medication or a transfusion. However, he must stay at the hospital at night because he still has to have TPN (intravenous nutrition). He is still not eating any food. He is showing interest in food which is an improvement so hopefully as each day passes we will get another day closer to him eating again. He is tolerating milk better now so we are able to increase it 1 ml every other day which means he is getting better nutrition through his gut.


  
In himself Seth is OK. His mood is good, however, it is subdued. When we first got the halfway house, Seth lost a bit of his sparkle. It was a little like it was a bit too much for him. He also found Hugo difficult to fathom. He isnot the peaceful little newborn Seth remembers. He now takes Seth’s toys, and does not understand the rules of sharing. Hugo also demands a lot of attention, he has to be watched. Seth isn’t used to that. He has not had the opportunity to grown with Hugo. So we make a big effort everyday to make sure we spend quality time giving Seth attention alone and with Hugo.


His skin is brilliant at the moment!!! The GVHD rash seems under control, we have been able to reduce the steroids so he is on 5mg one day and 0mg the next. This is still IV at this time, but will change to oral when we drop next time which will be to 2.5mg one day 0mg the next.

The Adeno virus is back, but only at a low level. The HHV6 is still at the same level. But neither are affecting him. So at the moment we are not very worried about them – they are managed and hopefully as we reduce the suppression his immune system should come up more and be able to deal with the virus’.

So things seem to be going well at the moment. Things are just taking time. We have worries, but they could be worse.

Today: T+54

As time goes on and Seth still receives gifts and letters in the post and messages through various media wishing him well. We feel grateful for all the support he has received. This week has brought a new surprise. A letter from our local Member of Parliament, and a second letter from the Prime Minister, David Cameron. It is nice to know that Seth’s story has been heard by so many and will possibly help others dealing with Primary Immune Deficiencies and/or Bone Marrow Transplants.

As I have previously said, the Bone Marrow Transplant Unit at the Great North Children’s Hospital is supported by The Bubble Foundation, an incredibly small but amazing non-profit set up to support children with Seth’s illness, Severe Combined Immune Deficiency. However, the unit transplants children who suffer not only with immune problems but any other difficulty that can be cured or helped by a bone marrow transplant, such as leukaemia and childhood arthritis. These children also benefit from the great work of this charity. Speaking to other families on the unit also opens your eyes as to how different every journey through transplant can be. I have discovered that with leukaemia a small amount of Graft Versus Host Disease can be a good thing as it can prevent the leukaemia from returning, which is the exact opposite of what we hope for with our transplant! As there has been so much interest in the charities supporting Seth I will do a blog entry (separate to this one) highlighting the support we have had so far. Also I have been contacted by quite a number of families who have themselves been through the bone marrow transplant journey and I thought it would be nice to have a blog post dedicated to helping families prepare for transplant that everyone can add their experiences to. Again this will be added in a separate blog.

Seth in himself is continuing to do really well.

Eating – He is still not eating consistently but on Monday he had half a yorkshire pudding (i am not sure if our readers from outside of the UK will know what that is – but we have them with a roast diner …. and they are amazing haha) and a floret and a half of broccoli. Today he had 2 plain pasta shells.

It doesn’t sound much, but his attitude towards eating is improving. We know he does not have a great relationship with food, so we have made a sign for his room door asking people not to come in if he is eating, and if they need to, not to mention the food. If people talk to him about it even if it is just “o you are having something to eat!” you can see him shut down and become anxious. He will then refuse to touch the food. Today, however, when his pasta arrived he gave a big “Whoop!’. So it is slow progress but if we can make food for him like it is the rest of us we will have won the battle i think.

He is still having milk feeds over night to give him nutrition alongside intravenous nutrition. The milk feed is now running at 23ml per hour, 4 hours on 2 hours off from 5pm to 7am. They have reduced his intravenous nutrition to 10 hours, so he has all day off his lines now other than the odd short medicine or blood/platelets if he needs them. He is still vomiting daily, and this increases when we increase his feed, but seems to settle down 3 or 4 days after.

This means that we are now waiting for a halfway house! Seth won’t be able to stay overnight but can be there during the day – which I really think will help his relationship with food – especially as Hugo LOVES eating!!!

Also I think having a bit more normality will help Seth psychologically. Over the past few weeks his behaviour has been getting a bit difficult to handle. He is not a naughty child, never has been. But he has so much energy he is bouncing round the room, switching from one activity to the next, not concentrating and pushing boundaries. It does not help that British Summertime is not to be seen and its raining everyday at the moment. We did manage to get him out on Monday to the museum again though. Which he walked round on his own showing me everything he loved.


    

Unfortunately, our family dog, who Seth loves SO much, has a tumour behind his liver. They don’t know if it is cancerous or not at the moment so we have no idea what will happen in the future. But Seth has been so interested in what is happening. He asks questions about blood tests, and needles and has made Stevie (the dog) 2 get well soon cards. Hopefully Seth will be able to see Stevie again.


Health wise, this week things seem to have improved slightly. The HHV6 virus is showing less in his blood and the Adeno virus that he was positive for last week is now negative. So the drug he is on for it appears to be working.

His skin looks great this week. The GVHD does seem to be flashing up now and then but I think the frequency is less, and it only flashes up for a minute or so and responds to the cream. Fingers crossed that this is as bad as it gets. I really hope so anyway.

Graphs

I thought I would post pictures of the graphs I have been keeping so I can monitor his progress.

Platelets. These are still dripping quite quick, but he is not needing transfusions as much as he was.

Neutrophils. these have been up and down but remain in an ok range. i would like to see them go higher though.

Red Blood Cells. These are maintaining much better than they were as you can see (the  rise is when he has had a transfusion) he is not needing these anywhere near as much as he was.

So our journey continues… i would love to live a week or a month at a time…..and go home…..i really miss home… but we are still a journey away from that…and still taking it day by day.

Today: T+49

49 days post transplant and Seth is doing ok really. Better than expected which is great!!! It’s June and we are halfway through 2015.

I have had a bit of time at home the last week as Hugo has had a cough and I had to return to the dentist (joy!). This was hard leaving Seth, but Hugo thrived. It made me realise how much this effects him as well as Seth. He is only a baby but he has loved seeing my best friends little boy this week (who is 2 weeks younger than Hugo). It got me thinking about what this year should have been. I should have been on maternity leave at home, taking my new baby to baby groups, meeting my friends and spending time helping our new baby grow and become part of our family.

Instead, we have spent the first half of this year giving Seth a chance. So I think it is maternity leave time well spent. Hurrah to the first half of 2015.

In himself, Seth is doing great. He is full of energy jumping all over daddy. It is clear he has a bit of cabin fever – in that he is bored of being in his hospital room for most of the day. He has time in the physiotherapy gym for 3 half hour sessions a week which he absolutely loves. We also get out to the park and make boats to race on the water.

Ryder had a hickman line fitted this week. Doctor Seth checked his bloods – all with a sterilise field and alcohol wipes – ‘got to be clean daddy’.


Walking the ‘snake’ in physiotherapy

  

One of Seth’s favourite physiotherapy exercises – racing to move the beanbag animals from one place to another faster than daddy or mummy!

Today we went out for the longest time yet, about 2 and a half hours and we went to walk around the fair ground that has been set up. Seth loves looking at it (he cannot go on!!) and he keeps talking about how when he is better he is going to go on the fair. He has also become interested in a skate park that we pass everyday and is saying he wants to ride his scooter on it.

Greating Grandma speeding ahead on his scooter. He had not seen her since transplant when the chemo was making him feel pretty ill. So he did not speak to her.

It is so great to see him how he is at the moment. So full of life. He has always been a happy, smiling boy, but he has never quite been a cheeky child of his age. Until now. I sometimes find my self watching him and smiling that finally I am seeing a child emerge.

Hugo learning about Seth’s face – through a protective rain cover…

Infections:

At the moment Seth is testing positive for Noro Virus,  Adeno Virus and the Human Herpes Virus 6. He has been on treatment for the HHV6 infection for 2 weeks, initially the virus went from 10 to the 5 in the blood to 10 to the 3, but it has now gone back up to 10 to the 6. There is an alternative treatment which also treats Adeno virus which he is now on. This is a once a week treatment to start with and will then drop to once a fortnight. The positive thing is that at the moment he is not showing any signs of illness. No temperature’s or feeling unwell! – yey!! He is vomiting every day, this is usually just once a day and we are not sure which is causing it. It could be the mentioned virus’ or low tolerance for milk feeds. But it is not significant so at the moment we are just monitoring it.

Hands:

Look at these bad boys! No more bandages. He has better movement in his fingers that he had before because the skin is not thickened from GVHD. At the moment his old damaged nails are growing out and new nails are coming through. This is common as when you are really ill the body stops doing things that are not totally necessary – like growing nails.


       At the moment Seth is still needing platelet and blood transfusions, but these are at the moment getting less frequent. I don’t want to get ahead of myself, but, I would love for a time to come where he does not need them again. He has been having 3 or 4 weekly blood transfusions since September 2014 and platelet transfusions since October/November at a similar rate.

So, things have changed so much in the last 6 months – surely as a BMT parent 49 days after transplant I can start to relax right?! Well, maybe not quite – I have graphs so I can see any trends or changes in his stool output, Red Blood Cell level, Platelet Level and Neutrophil levels. This is probably not necessary – but as I have said before you are sometimes armed with too much information. I have really found the graphs helpful for me to see the overall picture, rather than panicking because his neutrophils have dropped two days in a row, or he is still needing blood transfusions.

At the minute I feel a bit like we are sat waiting for a train that we don’t know where it’s going. We have a few virus’, we have a little bit go GVHD, we don’t know if the Thymus is working or not. Only time will tell on these. Today, these problems look like they are being managed….but, what will tomorrow bring?

Don’t get complacent and take it day by day