2 years since the day that change ALL of our lives

 

It has been a long time since i have posted. Apologies for that, life has got in the way.

I can not believe that 2 years ago today Seth made it to transplant and he got ‘the magic’ from his daddy. The difference in him in those 2 years is unbelievable! I don’t think Nik or I ever thought we would be raising a ‘normal’ boisterous cheeky child – who hasn’t been hospitalised with illness in OVER A YEAR!!!!!! – that would never ever happen! We spent 5 years in hospitals, just thinking this was how parenting was. Knowing nursing staff on sight, where as now I doubt the nurses in our local hospital would recognise us!

So Seth – medically is doing really well. In terms of his immunology he is fine! Great in fact! He has now had all of his immunisations (he had to start all over again as if he is a new born) and has managed them fine. We are also now on ANNUAL visits to the Great North Children’s Hospital!!!!!!!! – in 6 years we never thought this would ever be possible!

He had period where he suffered with a sickness bug. For two or three days he was ill, but recovered well. Although, he stopped eating and it took us a few days to get him back to eating anything. This worried me and I was anxious that we should be ringing the hospital. However, he came out of it and is now back to eating EVERYTHING in sight – which is another first for us as he has always been fussy with his food. I think his taste buds are finally recovering from the years of steroids and the chemo. He is trying new foods and enjoying them, he is looking forward to certain types of food for the first time ever! So for those of you coming out of chemo and going through that phase of being desperate for your child to eat and not understanding why they won’t eat the slightest thing – don’t worry – eventually they will! People told us this, but at the time it seemed like there would be no end. That Seth would always only eat ham and pretzels! But now he loves Chicken Curry, Fajitas, a roast dinner, lasagne – all sorts of sauce based food! Only recently has he been able to eat sweet food. Seth has never been partial to chocolate or anything sweet, however, in the past few weeks he has started to ask for sweet treats! This is something we are trying to manage well as we don’t want his teeth rotting away – especially when the dentist has been so pleased with the quality of his teeth because he had not had sugar!

Seth is growing as well. He is still small for his age, more like a 3-4 year old. However, he is finally growing! I have had to buy new shoes and clothes for him because he has grown out of things- I have never had to do this before! (well only previously because the steroids made his belly so large that I had to buy a bigger size in tops!). His legs have also grown and he is much more in proportion. He is still on a night feed of milk to help with his calorie intake (and hopefully growth).

Physically Seth is improving all the time. A few weeks ago he walked to school for the first time. It was his request and we didn’t think he would make it the whole way. But he did, and he really enjoyed it! He does have a bowing to his legs where his bones that go into his knee joints have grown at different speeds – so the outside has grown faster than the inside causing his lower leg to come out at an angle rather than being straight. We have been to a specialist about that and they have noted some improvement so are not going to interfere at present. I can also see an improvement as he is running and able to do small jumps now, where as previously he couldn’t do that at all.

All in all his quality of life is infinitely better than what it was 2 years ago and we have The Great North Children’s Hospital, the nursing staff and doctors on Ward 5 and of course Andy Gennery and the other immunology consultants who worked so hard to get him through transplant.

Although things are going better than expected, you still get your worries, the niggles that you have developed over time worrying about a child with health problems. However, they aren’t as strong and less frequent. Life becomes fun again and planning for the future doesn’t require the careful planning and commitment that it once did. Seth has ongoing battles to face in relation to finding his place socially and catching up educationally. He missed so much as a child that he is not as developed or sophisticated as his peers and it is hard as a parent to watch your child try and figure his way through this maze. He wants to socialise with peers his age, but he is smaller and not as mature, but then children younger than him he struggles to understand and accept their unpredictability. Educationally he struggles sometimes but he is catching up so hopefully he will get there. We will do what we can do to support him, but unfortunately these things we can’t do for him.

I am afraid this is likely to be my last post on here. With work, family life and another baby on the way I am struggling with time!!! Thank you to every single one of you for the support you have shown Seth over the past 2 and a bit years. You can never know how much it helped us help him.

Thanks

Leanne, Nik, Seth and Hugo.

This is how Seth has been spending some of his time since transplant!

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Guitar playing

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Making the most of a hot and sunny day in England at the beach!

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Giving his brother a lift!

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First Ski lesson!

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Has there ever been anyone more excited to meet Santa?!?!

T+407…we did it! Over a year since transplant! 

So it’s been over a month since the one year anniversary of Seth’s bone marrow transplant. 

Since my last blog (which was a while ago- apologies!) we have stopped quite a few medicines and stopped the immunglobulin infusions. Which is amazing progress! After Seth’s first transplant we were told that he would need the immunglobulin infusions for life because he would never produce B cells. However, this transplant has basically reset everything and he now produces his own B cells! Amazing! 

Also no sign of GVHD! So we can relax a bit. 

Seth is continuing to love school and we have been able to have our first family holiday since the transplant and Seth has been able to have his first plane ride!!! It was such a lovely holiday Seth has the best time! 
However, as per ‘sods law’ two weeks before we were due to lace for holiday Seth started spiking high temps of 39 and 40. Paracetamol wasn’t bringing it down but ibuprofen was. He was started on antibiotics for a potential infection in his button (a line foof into his stomach for his milk feeds and medicines). This helped and the temperatures stopped. But then on the Monday before we were due to leave on the Friday Seth woke in the night screaming in pain in his right hand side. Investigations identified a kidney stone 😩. But he was immediately put on the right antibiotics and within 48 hours his blood markers were back in the normal range thankfully!!! We were given the go ahead to take him away 18 hours before we flew! Cutting it fine!!! 

We had a bit of a rubbish time with our flights- long delays and lost luggage but we had a lovely time in Malta. 

helping mummy at the yard

attending a masqurade themed family birthday

Making cakes for the school bake sale

ready to fly…a bit nervous until we started moving then he loved it!

Making the most of the time waiting for the flight

absolutely loving the swimming pool

dunking daddy

making the most of a warm and sunny day in England!

T+326!!

Well…..we are coming up to the first anniversary of Seth’s transplant (1st May), however, this weekend marks the anniversary of #wearyellowforseth. We have been looking back over the pictures and messages and I think we are only just beginning to realise how big the # was! I have been blown away again by your amazing support. Thank you.

Seth is well, despite Hugo being ill recently and Seth has stayed well! It seems that daddy’s magic is working well!!!

Seth is eating really well, but I don’t think he is putting on enough weight. So I am concerned about that – i guess worry never ends as a parent!

Seth has lost his first tooth this last week! However, he doesn’t have a gap because he had already grown his replacement!!! He was very proud of his little tooth and left it under his pillow for the tooth fairy (also called the princess by Seth). He was so excited he forgot about it in the morning and I had to remind him to check if the tooth fairy had been!!!!


A short update this time – but I am seeing that as a good thing as for the first time in 6 years….things are settled – long may it stay that way!!!!

Here is a little video to say THANK YOU and recap on Seth’s year!

T+234….HURRAYYYY!!

So time has been ticking and the days seem to be flying by. Seth is still doing really well. We have all been ill in the house, except Seth who has been fine!!!

In the past month Seth has started back at school! It is only 1 hour a day for a one on one session with a teacher. But he loves it. It has given him more energy and his behaviour at home has improved.  The teachers are really pleased with him and say he is very dedicated. However, when I collect him each day and ask him what he has done he says “I don’t know”! 
  
However, you may notice that he has a cast on his foot in this picture….Seth broke his leg. Another side effect of his complicated health history and long term use of steroids has led to him having osteoporosis. So his bones are very prone to breaking. He was running down the hall to me and just slipped. He landed funny on his leg and unfortunately caused a very small fracture. Luckily he only needed the cast for 2 weeks. But he was happy and walking on it a few days after having it put on (with the permission of his doctor!!!)

  
Immunology wise the numbers are continuing to go in the right direction….and…..finally….we have evidence that the thymus is working! There are educated T cells now coming through. The numbers are still low but it’s a start. 

All of his bloods look good at the minute and finally he is getting his appetite back. I never thought I would get excited at Seth saying “mummy my tummy is rumbling”. 

The one thing that is worrying me at the moment is that his skin has gone a little dry. The hospital say that this is because of the change in weather and that his skin is still very sensitive. But with Seth’s history I automatically started worrying about GVHD again. 

Also his hair is thinning. He has lost his eyelashes, although there are some new short ones there, and his eyebrows have thinned. A few months prior to him being admitted this time he was losing his hair. So again I started to worry. But Seth’s doctor again thinks that this is more related to his body having been through a trauma that it is still recovering from. Reminding me that it is only 6 months since his body had to battle very hard, and that major changes are still happening internally. 

I guess that’s the struggle with a bone marrow transplant- you don’t see the changes, it’s not like they have a scar on their chest as a reminder of the transplant. 

So, I’m trying to remain positive. The champagne is still in the fridge, but I am not ready to open it yet 😉

Halloween- Surgeon Seth

 

Building a tent and watching an iPad with a snack   
Christmas is coming and Seth is very excited!!!   

Showing off the big muscles he has from all his eating.   

    

The first book from his advent (he doesn’t like chocolate and sweets so we do books)

  

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. 

Day 0 – transplant day 

Another step closer to Seth being able to come home. 

Today Seth has been ok. He’s been sick a few times but he’s remained temperature free. However he has tested positive for the HHV6, although at a low level. 

So we spent the day waiting for the cells to be manipulated and made ready for Seth. This includes a lot of maths making sure that the right number of the right cells are given. At 5.30pm the cells went up and the infusion started. 

As they came in to give the drug Seth got upset and a bit scared as he didn’t know what was going to happen. But within a few minutes of it running he was sat on his bed watching Mr Bean cartoons and colouring in!!!

   

 

So what now?

Well Seth’s journey is far from over. The effects of the chemo will get worse and continue for another 2 weeks. In addition the new cells have to find their home and start work, hopefully without causing problems. 

So the major first step to recovery has started, it may bring complications but we still have to take it day by day

Today: Fasten your seat belts…..

So since my last post Seth has had a bit of a hard time. He has contracted a virus called Hhv6 (Human Herpes Virus 6) this is part of the herpes family and is a virus that by the age of 2 years old 98% of the population carry it, and are most likely unaware. It is likely that Seth was a carrier of this virus and now that he has no immune system it has ‘flared up’. The worry is that it is a virus – which antibiotics cannot treat – will cause Seth to become incredibly ill and the medical staff will not be able to manage it. However, this virus is treatable. The medicine takes a bit of time to work, but they can treat it. It caused Seth to vomit and have loose stools. He was not holding down food and felt poorly, his temperature was consistently above 39 with paracetamol.  Although the Doctors said his presentation was normal for this virus and that it is treatable, it still sparked worry in Nik and I. We are getting close to transplant, we need to keep him well.

Yesterday, Seth turned a corner and perked up for the first time in nearly a week. He was happy and playing and got down off his bed to play on the floor. But today he woke very tired and complaining of pain in his right side. His blood results had returned showing that his HB (red blood cells had dropped from 96 to 39 in 24 hours, and his potassium was very low. His presentation was consistent with these results but an X-ray was carried out just to rule out any other problems. Within half an hour of the blood being put up Seth had totally perked up and his pain had gone away. It’s amazing what a bit of blood can do!!!!

Then this afternoon we have had visits from 2 consultants. The ward consultant and Seth’s consultant with some important news…..

TRANSPLANT DATE HAS BEEN SET  FOR 1st MAY 2015.

Seth will have 7 or 8 days of chemotherapy finishing the day before transplant, and Nik will start the injections to activate his bone marrow 5 days before, with the bone marrow being harvested the day before. ( i will do a post about the transplant next week when we have managed to have a sit down and a long chat with the consultants).

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Having bubble blowing races with daddy (its for lung physiotherapy)

Having bubble blowing races with daddy (its for lung physiotherapy)

Practicing writing numbers

Practicing writing numbers

Get some rest baby

Get some rest baby

Today: That boy just gets more amazing…..

So my last post detailed my concerns about the return of some of Seth’s immune system (t cells). We have now spoken with Seth’s consultant who agrees with us – this graft is unstable. It is going to be better for Seth to get rid of it and start again. Even though it is dangerous the years of steroids and problems with this graft are taking its toll on his body. So its time for that graft to get out!!!

This week the plan was to remove Seth’s gallbladder because of a large gallstone that has been causing problems. This happened on Tuesday and whilst he was under he had his PEG changed to a button. The PEG is a tube going from the inside of his stomach, through the stomach wall and out of his belly that milk and medicine can be put down. Seth has a very poor appetite so we need this to help him put weight on. The button changes the tube into a shorter tube that stops at his skin. It is more hygienic and doesn’t dangle down so won’t get caught on things.

The gallbladder removal went well and they were able to do it via keyhole surgery. Afterwards he was in a lot of pain (which is always difficult to judge with Seth as he doesn’t complain, but when he tried to move he cried so we know it hurts a lot) as such he had morphine to help him manage the pain and get some sleep. The day after his surgery we were surprised at how Ok he was. He was his normal self, sore and needed a morphine bolus when we carried him to the toilet, but he was sat up in bed playing paw patrol and fireman sam. The day after however, he was very sore and did not want to sit up or move at all, he slept a lot and they had to increase his morphine. By the Friday, however, he had perked up again. He had a wound at the bottom of his belly (similar place to a c section scar) which started oozing. This made Nik and I worry as our first thought was INFECTION. However, the surgeon came to see him and was very pleased with the wound. Leaking is expected apparently because it is a high pressure wound and as long as it is dressed properly and kept clean it is fine.

Seth has now been moved into the room he will be transplanted in this room his smaller than his previous rooms (no reason – just how it is) and it has a blue line on the floor. Inside the blue line is the “clean” area. Above Seth’s bed is an air system. It pushes air down onto Seth’s bed. Vents in the corner of the room suck air out. So the air inside the line is filtered and clean. Outside the line is where the dirty air is pushed to.  So this means that he can have visitors – as long as they are well and do not enter the area within the line.

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The blue line that keeps Seth safe, and the rules of RED isolation.

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As a result of the move we are now in RED management and will be so until he has neutrophils post transplant (approximately 10 days to 3 weeks after transplant we should see him having neutrophils). At that point he will go down to PURPLE management and be allowed out (wearing a mask).

This week two other families on the ward have children that have now got neutrophils after transplant. This is brilliant You spend a lot of time on the ward and although you never meet the children, you feel like you know them. You spend a lot of time with their parents and asking after their welfare. It is brilliant to see things going well. But at the same time you have a pang of sadness wishing to be in their position. So much could happen in between now and then, we may never get there.

I had a brief conversation with Seth’s consultant on Sunday and he is very happy with Seth’s progress so far. A CT scan last week showed the infection we were worried about has gone – so what the doctors are doing so far is working. Ideally they would like to transplant tomorrow – as soon as possible. But it is not safe to do so whilst he is still healing from the operation. Chemotherapy could cause the wounds to re-open, which could be devastating. So it is a fine balance rather than best case. Were hoping he will heal well and we will be able to start chemo in 3 weeks. But that is entirely dependent on Seth’s recovery. We have had so many twists and turns over the years we take everything day by day. Never look to tomorrow – things could be entirely different and that leads to disappointment.

When it is time to transplant Nik and I have to give consent, at which time we will be told in the ins and outs of chemotherapy and the risks. We know that these will be scary. But we have no choice. We do this or we definitely lose our boy. This gives him a chance. We know that Seth has extensive damage to his lungs from the lung infection i spoke about here. Chemotherapy may cause issues here, this may be a problem, he may struggle and need assistance to breathe. We have to be ready for that. We hope it doesn’t, but we have to be prepared.

On a lighter note during this conversation we spoke about Graft Versus Host Disease, which we have been battling for 4 and a half years and lead to where we are today. Research indicates that a T cell depleted transplant carries a low risk of Graft Versus Host Disease. Seth’s chances are higher because he has had it before, but even so they are still very low.

My mum and step-dad came to visit this weekend, they spent time with Seth (only my mum was allowed to touch him as she is the 4th carer. My step-dad was allowed in the room but had to sit in the dirty area and was not allowed to touch anything.). They also took Hugo for a while so that Nik and I could be in Seth’s room at the same time – which was weird AND BRILLIANT! I really can’t wait for the day that Hugo can be there too.

New bedding sent to him. He LOVES it!!!

New bedding sent to him. He LOVES it!!!

Doing school work - learning to write

Doing school work – learning to write

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Easter Eggs! All donated to the ward by kind people....Seth does not like chocolate though so........

Easter Eggs! All donated to the ward by kind people….Seth does not like chocolate though so……..

Playing with Paw Patrol pups and showing off his new hair cut!

Playing with Paw Patrol pups and showing off his new hair cut!

the certificates he is given when he has to have something done that isn't nice, or he does something that we want him to do like eat.

the certificates he is given when he has to have something done that isn’t nice, or he does something that we want him to do like eat.

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot - but thats the most he has eaten in weeks!)

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot – but thats the most he has eaten in weeks!)

After the overwhelming success of #wearyellowforseth we have started to decorate his room….

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So that is where we are – no we wait and take each day as it comes. We wait.

Today: A bit of head scratching…..

Hello again. Wow what a week. Its been amazing, confusing, stressful, tiring, scary, fun and inspirational!

Since my last today update (can be viewed here). Seth there have been a number of days where Seth has had a temperature which has resulted in increased respiratory rate, heart rate and blood pressure, but he has remained happy and positive in himself. As a result of this we have had a CT scan this week under general anaesthetic. The results of this show two areas of infection in the top of both lungs. Obviously this is a concern and it means that he needs the transplant soon if he remains without any form of protection as it seem the antibiotics he is on is managing it to an extent but they may not cope long term. They did manage to get a good sample of mucous from his chest whilst he was asleep so hopefully something grows from that and we are able to identify what exactly it is on his chest….fingers crossed!

I’d like to remind you of something I said in a previous post (here):

“They will give a drug called ATG everYday for 5 days starting Monday 9th March. This drug wipes out all the T cells. Then we wait. There is a possibility that Seth’s own neutrophils will come back, but they may not. He may be left with an empty bone marrow if the T cells have been able to cause enough damage. So them coming back and giving him a little bit of protection is best case.

Or the bone marrow may come back as donor cells…this will cause more head scratching and frowning from the consultants!! Let’s be honest Seth really likes to confuse things so let’s not rule it out even if it’s thought to be unlikely!!”

So, here i was talking about them giving Seth a drug called ATG. This drug kills active T cells. The aim was to get rid of the cells from the last transplant to allow his bone marrow to have a break and his body to return to normal function. The intention was that he would start to maintain red blood cells and platelets again and there was a small hope that his own neutrophils would return to provide some protection over the next few weeks while we wait for transplant.

So, over the past few days Seth’s bloods have shown a very small insignificant increase in his neutrophils (not enough to provide him with any sort of cover), BUT also an increase in his Lymphocytes (T and B cells) which means that the T cells they got rid of are now coming back……… this is where it gets complicated….

This could mean that his bone marrow is now producing T cells (donor ones as he will never be able to produce ones from his own DNA). These could be well-behaved T cells and provide him with protection and a working immune system (however, we are not seeing any significant increase in other immune cells at the moment).

OR his bone marrow could be producing T cells that are not well-behaved (like the ones that were killed off by the ATG). These would come back and cause Graft Versus Host Disease again. Seth has damage to his skin from Graft Versus Host Disease and he has damage and infection in his chest. So these  T cells may cause problems there, which we do not want.

So at the minute we don’t know whats going on!!!! They are taking blood to look into what cells are there in more detail to be able see more of what is going on, and this week he has his gallbladder removed and a few other bits done in surgery. Whilst he is recovering from this we will be monitoring what is going on with his immune system and skin and discussing the plan with the doctors.

This week Seth has moved rooms to his transplant room. He is in stricter red isolation so we are washing our hands more than ever which is making them red and sore, but that’s nothing in comparison with what Seth has been through so we’ll get on with it!

Also we have had the amazing #wearyellowforseth day. Which Seth loved. He was visited by local firemen who gave him a real fire suit and brought the fire engine outside his room. They then got lifted up to his window. (https://youtu.be/n9OSXjLLwHM). He loved every second. He has also receive gifts from various people, which has kept him busy.

But he has especially loved looking at everyone’s pictures! The dogs dressed in yellow has made him laugh out loud, he has been asking to look at more and had an amazing day Friday spending most of the day out of his bed and on his feet.

If you want to see ALL the pictures posted to ALL social media you can at http://www.wearyellowforseth.com.

Saturday morning he wanted it to be yellow day again – because that was his favourite day! So thank you everyone!  We really had an amazing day and the positivity shared on that day will help us keep Seth positive for a long time. YOU ALL DID GOOD!!!

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Seth received some balloons from someone and LOVED them!

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Seth and Me sporting our matching t shirts!

History: Part 3 – To transplant and getting home!!!

It’s been a little while since I last posted about Seth’s history and the things that have happened up until his readmission to hospital at the beginning of February. You can read the first part here and the second part here.  So much happened during this time it is difficult to remember, but the basic over view is here – i hope!

We left off with Seth being deemed well enough to be moved from Leicester Royal Infirmary to Great Ormond Street Hospital in London. This is approximately a 3 hour drive. Because he was still on oxygen and still really quite a poorly lad we had to blue light there with two nurses in the back just incase Seth had any problems. Arriving at Great Ormond Street I was overwhelmed. This was the children’s hospital that we have all heard about (in England at least!). They fix the sickest of children. So they had a reputation to live up to. This was my first time seeing Great Ormond Street and my first time being involved with tertiary care (tertiary care means that they largely provide third-level specialist care. Primary care generally consists of frontline services such as GPs and dentists, while secondary care is offered by local hospitals. Therefore they address more specialist issues). We were on Robin ward, a ward for infectious diseases and immune deficiency. You may be thinking woah woah woah – immune compromised kiddies on the SAME ward as children with infectious disease?!?! Yes its true. But the ward is a corridor with a bunch of rooms, all with filtered air that takes out any bacteria. Prior to a patient going into a room the room is deep cleaned. The nursing staff follow strict guidelines to prevent infection between patients. So actually it makes sense that both are on such as ward as they both need isolation. Also children like Seth often carry infectious disease because of the nature of their illness.

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Robin Ward at Great Ormond Street Hospital.

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The ward is a corridor of rooms. As you can see in this picture the children have a large glass window to look out of.

Seth arrived at Great Ormond Street Hospital at the beginning of October 2010. Within a few days of arrival we had met Seth’s allocated Immunology Specialist Nurse, she would be his main contact throughout transplant organising his care alongside his consultant, Dr Wasim Qasim.  The first thing was to discuss donor options. They were approaching the bone marrow and stem cell registers world-wide to identify any potential matches. Within 11 days we were told there were 4 matches, each being a 100% match to Seth. The doctors decided to go with a cord transplant from a cord donated in Germany in 2006. The reason they chose this was because Seth was carrying virus’ in his stomach and chest and research had indicated that a cord transplant was more likely to be able to address these issues quicker than a donation from an adult marrow.

In addition to this we were told that because of the damage caused to Seth’s chest, and because he was carrying these virus’ chemotherapy would put his life at risk. Normally you have chemotherapy to prepare for a bone marrow transplant. The chemo empties the bone marrow of all cells and the new bone marrow goes in without there being any cells to fight.

Seth’s condition (x linked Severe Combined Immuno Difficiancy) means that he does not have any T cells (T cells are white blood cells, but the most important white blood cell as none of the other cells work without them). So as he has no working immune system and is missing “the management” he is in the best position to have a successful transplant without conditioning (chemotherapy).  However, the risk would be Graft Versus Host Disease which can cause significant complications and in some cases be unmanageable causing death.

In an ideal situation we would go for the conditioning and get rid of anything that Seth may have had in his bone marrow. But, unfortunately, we had no choice. He wouldn’t survive chemo and gene therapy at the time was new and thought to be causing leukaemia in some patients. So we agreed and plans were made.

Whilst this was happening Seth’s chest was getting stronger and he was becoming himself again. Because of the virus’ in his stomach he was nil by mouth and being given TPN (Total Parenteral Nutrition). So he was getting all the nutrients he needed, but was still hungry. He would go crazy when the nurses brought in his oral medicines and suck them out of the syringe despite them not tasting very well. He would also suck the water of the sponges we used to keep his mouth clean. It was hard to watch your baby being so hungry and you not being able to explain why he could not have food. However, as usual, Seth dealt with it and got on with thing most of the time  ( way better than i would have done – i get ANGRY when i have missed one meal never mind several!!).

As the days and weeks went by there were a few hiccups with Seth spiking a temperature and having kidney problems. This delayed the transplant on one occasion.

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Sucking the water out of a mouth cleansing sponge

Seth received his transplant on 5th November 2010. When you get to transplant your child goes into script isolation, where gowns have to be worn at all times, clothing and bedding boil washed daily, very strict hand washing, no drinking or eating in the room, everything Seth touched had to be sterile and only 3 named carers allowed in his room until he has neutrophils. Our named people were me, Seth’s dad and my mum. In the few weeks before the transplant we asked friends and family to wear yellow (like we have this time, however, it did not get so big last time!!!). This was really good for us as parents isolated from the people we know. It’s a way of making you feel like everyone is closer. I mentioned in my previous post (an aside) where the idea came from but i will re post here in case you did not see it.

An old friend of mine was also battling leukemia. She was a big supporter of Seth and spoke to me about the significance of the colour yellow in relation to immunity. Apparently is signifies a strong immune system.

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A few of the pictures we received on the previous wear yellow for Seth day 5th November 2010

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Below – Seth and I on transplant day in our yellow tops!

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The cord had arrived frozen and was defrosted in the lab before being brought up. Seth had three bags of cells! The process is less exciting than you expect it to be. It happens very similar to how a blood transfusion happens. However, Seth was on so many medications he was attached to his line pretty much 24 hours a day.

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The new immune system going in!!!!

The actual transplant days (he had one bag of cells a day for 3 days) we uneventful. Although it came with an overwhelming smell of canned sweetcorn! The substance used to freeze the cord blood after harvest smells of sweetcorn! So as it is given to Seth he starts to smell of sweetcorn! I swear I loved sweetcorn until that! It was overpowering at times!!!!! Seth didn’t seem to mind though.

4 days after the transplant Seth grew his first 2 teeth! All of a sudden out of no where! It was quite a surprise! On the 5th day i noticed Seth flash red, his skin went a patchy red for a few seconds and then back to normal. I called the doctor as they had stated that this was a sign of Graft Versus Host Disease, but they said it would be longer before there would be any signs of it.

Following transplant it was all a bit of a blur. The days were very much the same routine. Normally volunteers and play specialists spend time with the child playing with them helping them develop, and giving them another face for an hour. Because Seth had virus’ he was not allowed such visits. So Seth and I spent all day everyday together, which wasn’t too bad actually and i was able to get out of the room when he fell asleep for a nap or in the evening. There was an intercom system that the nurses could switch on when i left so they could hear if Seth woke up. Nik, Seth’s dad had to work so during the week he would stay at home and at the weekend he would come to visit us. He would spend the nights with Seth and I would take a break and stay on the mother’s unit (accommodation for mothers provided by GOSH). Because i had been unable to leave the room all week I would often spend time during the days walking round London ( I can now navigate our great capital pretty well on foot!). This meant that Nik and I did not spend much time together. It mattered, but at the same time it didn’t, because this point in our lives wasn’t about us. It was something we had to get through. I think because we both accepted that we got through it.

After 10 days I went out as i did everyday to check Seth’s blood results and…. FANTASTIC… he had neutrophils. They were still very low, but had started to come up – this means that the transplant had worked…to some extent at least.

Also as time went by it became apparent that Seth did have Graft Versus Host Disease in his skin. So, although he was already on IV steroids (prednisolone) this dose was increased. In addition it was time for him to start eating again. As he had been nil by mouth for 4 months his stomach was extremely sensitive. He didn’t tolerate the smallest amounts of milk for the most sensitive stomach and refused to drink milk himself. So we had to feed him slowly through a pump and a NG tube (a tube from his stomach coming out of his nose). He tolerated very slow levels (5ml of milk per hour) and even his medicines if given too quickly would cause him to vomit.

Eventually he was off TPN, tolerating enough milk and was being managed on oral medication. This means the plan was home. Hurray! After 5 months and 17 days (170 days) we were going home!!!! YES!!! Although….this is Seth…. nothing runs smooth!!

5 days before we were due to go home i looked up and he was sat in his cot shaking, so much I thought it was the start of a fit. I pressed the buzzer and the nurse came in. He was spiking a temperature. His body was shaking to get itself hot. Phew, not a fit. But, a temperature, damn it so close to going home. The doctor was sure it was an infection in his Hickman line (the line that gives them access to a large vein in his neck so he can have large volumes of medicine) so they removed it and he had no more temperatures… we got to go home!!!

Going home wasn’t straight forward. Nik had to deep clean the house to make it as clean as possible for him. As although he was going home  he still needed to live in isolation for a while. So no visitors, especially no contact with children, no going out to crowded places and when out where there may be people to be in his pram with the rain cover over him.

The next step of his journey had begun though and we were home. With the boy who doctors weren’t sure he would make it out of intensive care. The next few months were all about weekly visits to GOSH (3 hour drive from home) for check ups and monitoring, and learning to live as a family again. Nearly 6 months apart is a long time.

In mid April I had to return to work as my maternity leave ended, so we had to think about what on earth we were going to with Seth. I had to work as we needed the money, and if i did not return I would have to repay my maternity pay. We were very lucky that a close friend was able to look after Seth when I had to go into the office. This made a huge difference to us as a family. 14 months later in June 2012 he was allowed to go to a local child-minder who had only a few children. This did Seth the world of good. Up until then he had only had contact with one child and as such he did not know how to interact with children. He had been  raised around adults and nurses and so children made him anxious. They are more unpredictable than adults! An adult doesn’t take a toy off you, or push you over so this was a whole new experience to Seth. He did not know how to communicate with children and so he took to being passive. If a child took a toy from him he would let them and there would be no response from him. As a parent it was difficult to see him being completely indifferent to situations like this. He did not get angry, or upset. He just sat there.

In addition to his lack of peer-to-peer social skills Seth’s development was delayed. At the age of one he was not yet crawling. At 18 months he had begun to crawl, but on all fours (like MowglI from the Jungle Book!), and did not start walking properly until he was 3 years old. He had support in trying to walk. The main reason for his struggle was that the steroids were preventing his muscles from growing properly and his ligaments were too loose making him hyper flexible. Although he now walks confidently he still cannot run or jump, and just prior to returning to hospital continued to lack confidence outside because of his lack of stability.

The graft versus host disease continued to get stronger causing extremely dry and flaky skin, inflammation and redness to the extent that his skin begin to crack and he would have sores, his lips at times were just scabs. It was not until his skin healed recently that we realised how much this affected his smile. He now has a great big smile that was not there before.

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Showing the GVHD in his face and hands

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The skin being very dry and thickening as a result of the GVHD

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GVHD on his belly that is very distended due to steroids

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Showing the GVHD in his lips, preventing him from smiling properly – but he still does it!

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Since transplant and until January 2014 we tried to manage this with steroids, for this time he has been on a very high does of prednisolone (2mg per kilo at times) which has caused its own problems. Steroids are a necessary evil i have learned. As a result of the prolonged steroid use Seth has osteoporosis. He is very small (the size of a small 2-year-old), and has poor muscle development. The steroids reduce the effectiveness of the immune system, therefore preventing it from attacking Seth and reducing the GVHD. However, this also makes him more prone to picking up infections.

Despite this reduction of his immune system he managed quite well, although we did have hospital visits regularly (if Seth has a temperature of 37.8 or above he has to go into hospital for antibiotics and blood cultures). These hospital visits also seemed to coincide with weddings! In 2013 we had 4 weddings to visit and we only made it to one as a family, luckily that one was ours!!

Although Seth’s health has never been perfect, we have managed it along with getting him to experience things. He had missed out on so much we want him to experience what he can. He has travelled to Europe – because he cannot fly due to the extensive damaged caused to his lungs when he was in intensive care.

However, we were failing to control the GVHD and there were growing concerns about him being on steroids at a high dose for so long. They were now becoming the problem. Luckily, the Great North Children’s Hospital had begun a trial using ECP (extracorporeal photopheresis or light therapy). To have the treatment you are connected to a machine by a central line. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein. Seth had this treatment at the Great North Children’s Hospital once a fortnight for 3 months, then once a month. Although at the time Seth’s management was at Great Ormond Street Hospital. The Great North Children’s Hospital was the only place in the country able to offer this treatment to someone Seth’s size. So once a fortnight we would travel up to Newcastle Upon Tyne (4 hour drive) and stay over night to have the treatment over two days. Seth’s skin did improve a lot, it meant that we were able to reduce his steroid from 20mg per day to 7.5 and 5mg alternate days.

This was looking BRILLIANT! Finally there might be an end in sight……….. however, in September 2014 Seth and the rest of us attended a friend’s wedding. Seth was doing amazing. For the first time ever he was confident in public like a normal boy. He got up with the band playing a toy guitar. It was amazing to see. However, at about 4am he woke up and came into our room complaining his leg was sore, we thought he had slept on it funny so allowed him to get in our bed and went back to sleep. At 7am he woke complaining it was painful again. Seth doesn’t complain. He broke his arm in 2013 (as a result of the osteoporosis) and we only knew because it was swollen and he wasn’t using it. So we knew something was wrong.

I don’t know why but i suggested deep vein thrombosis to the doctors who thought he had broken his leg. I just couldn’t see how he’d broken his bone, he had not fallen, or twisted it or anything. He had been fine. Seth was getting more and more pain in his leg which swelled to an unbelievable size. A wee man who doesn’t complain was screaming in agony when he was lifted to go to the toilet. So much so that he stopped going. Refusing to wee because it was just too painful. Eventually a ultrasound was completed and a large clot was found in his left thigh. It was a DVT. This meant that they could start him immediately on blood thinners and his leg should go down within a few days. However, when doing the CT scan and moving his leg it seemed that some of the blood clot had moved which caused Seth to have a turn. He started shaking, his temperature shot right up and he went unconscious. I felt sick, immediately i thought we were going back to intensive care. I genuinely thought that was it for him. Luckily, it wasn’t he was stabilised and then transferred from our local hospital up to Newcastle to the Great North Children’s Hospital.

For the first time ever Nik, Seth’s dad was the one going instead of me. I was 33 weeks pregnant and so not allowed to travel in the emergency ambulance with him. I have never had to watch him speed away before. I am always the one holding his hand. It was a horrible feeling not to be there for him.

That time we stayed in Newcastle for 3 weeks before returning home, luckily I stayed pregnant and had Hugo as planned in the hospital near our home. Hugo’s cord was collected at birth and frozen incase Seth would ever need another transplant. Hugo was also tested for SCID. The likelihood was that he would not have it because I am not a carrier, and he doesn’t.

In addition since August 2014 Seth has been unable to maintain his HB (red blood cell) level, so he has been having 2 to 3 blood transfusions per week, in December he also stopped maintaining his platelets (the things that make our blood clot) so he has been having transfusions of these ever two to three days. Initially it was thought that this was related to Haemolytic Anaemia (an auto immune disease were that attacks blood cells)…. however, we now know that it wasn’t this but that the Graft Versus Host Disease had begun to attack his bone marrow….leading to where we are today.