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.

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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.

A little aside….

A huge overwhelmed THANK YOU goes out to all of you who’ve read the blog, watched the video, commented, messaged and who are planning to take part in #wearyellowforseth.

As i’m sure a few people have noticed we were totally underprepared for the response we’ve had to this!! (Sorry!)

We are doing our absolute best to respond to every single one of you but there are only me (Seth’s mum), Seth’s dad, his grandad and his aunt currently answering messages and I think we’re answering you all.

We are trying to respond to comments on posts on YouTube, Instagram, facebook and Twitter but it’s impossible to keep up with so we are sincerely sorry if we have missed you.

I am aware that a few wear yellow for Seth accounts have been set up on Instagram and facebook which have been done without our knowledge. As such we have no input on these sights and cannot respond to questions there.

The official sites are:

Facebook – wearyellowforseth

Instagram – ourheroseth

Twitter – ourheroseth.

Or you can always message on here and I will get to responding to you.

We have had a lot of incredibly kind messages from people wanting to contribute to Seth’s medical care. We are extremely grateful that here in the UK we have the National Health Service which is funded by the welfare state. This means that we do not have any medical bills for Seth. So he has access to the best treatment he possibly can in an amazing hospital without us having to worry that we cannot fund it. We are very much aware of how privielidged we are that our boy has that benefit that many other children do not.

I really worry about what will happen if the UK government pursue the planned privatisation of the NHS for children like Seth who insurance companies would be unlikely to want to cover.

We also owe a thank you to the Bubble Foundation for the additional support we are getting so that Seth (and U.S.) can be a family as much as possible.

The Bubble Foundation provides accommodation for the parents of patients on Seth’s ward (there are 10 beds always full of children going through bone marrow transplants for various medical reasons). We live a 4 hour drive from the hospital and we have a new baby. This means that without this accommodation Seth’s baby brother and I would have to live at home and Seth wouldn’t be able to see me (his mum) for the time he was in hospital. It would also put a lot of pressure on his dad who would be with him everyday alone in the bubble.

Where did the #wearyellowforseth idea come from?!

Well 4 and a half years ago as Seth was approaching his first transplant an old friend of mine was also battling leukemia. She was a big supprter of Seth and spoke to me about the significance of the colour yellow in relation to immunity. Apparently is signifies a strong immune system. So we had the idea to ask people to wear yellow to show support on his transplant day. This happened and friend, family, associates and colleagues all posted pictures of them wearing yellow. It was amazing for us as his parents to see people we’re thinking of our baby. At the time Seth was only 7 months old so had no idea.

Since then Seth’s journey has continued and weirdly his favourite colour has become yellow! His playroom at home HAD to be yellow, he LOVES minions because they are yellow and Ioves it when he or his brother is dressed in yellow!

So as his health became more concerning and we were made aware he would need another transplant, it popped into my head that it would be nice to do the wear yellow day again because Seth would really love and appreciate it this time.

Seth doesn’t really grasp the enormity of what’s happening (I don’t either!), but the pictures he’s seen of people wearing yellow has already started to make him smile. So it’s worked already!! Thank you and we are looking forward to next Friday to see how amazing people really are!!!

The history part 2: it all gets a bit grim….or does it?!

At the end of the last history we had just been given the news that Seth had SCID. How do you respond to that? Well if I’m honest I didn’t know what to think. I’d never heard of immune problems, nevermind not having an immune system at all, and the consultant said it just needs a bone marrow transplant….easy right?!

They will fix the infection, and send him off to Great Ormond Street who will give him the bone marrow and we’re sorted right. Oh wait a minute…this is what I’ve heard about time an again since being a child – no match for bone marrow, and people doing massive world-wide campaigns looking for a match?

But whilst all this is going through my mind, there’s a feeling of relief – I’m not a rubbish mum who can’t cope with a simple baby! However selfish it may seem, I felt it. Now we know what it is we can do something. Hurrah! So first things first, he needs to get better.

At the time he was on an oscillator. This is a huge frequency type of ventilation, so effectively it uses little puffs to breathe for the patient, keeping their lungs open (give it a try quick short breaths you will feel that your lungs don’t fully close). More conventional ventilation requires the lung to open and close, therefore requiring more work. Seth wasn’t coping with normal ventilation, so oscillation it was.

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Nappies on his hands and feet to get them warm, all the medicines he was on, and the oscillator

They wheeled out what can only be described as a washing machine from the 70s, and they confirmed that in fact it was from the 70s. It sounded like a steam train sat in a station….but it worked! Within 24 hours of being on it Seth was coping, he was maintaining an acceptable oxygen level and his heart rate and pulse had improved – he was more relaxed. After this first week my mum went home as she had to return to work, and Nik also had to go back to work, He visited straight from work until 11pm but the rest of the time I was on my own, watching Seth’s monitor, doing his cares (wiping the inside of his mouth with a wet sponge, putting his eye drops in), and waiting for daily bloods to see what his infection marker was doing. He was improving.

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Every morning the consultant did their rounds and parents had to leave, but they let me stay and be part of the discussion about Seth’s progress. They’d always ask me how he’d been over he last 24 hours. On the Monday morning he was moved back onto conventional ventilation. But he struggled, he had to have very high pressures to keep his oxygen levels up. But in the afternoon the next day (1pm- it’s funny what seemingly irrelevant details you remember!) they felt he was well enough to be taken off ventilation. They warned me that it may not work and he will need assistance from other measures. He did need other measures, he couldn’t manage on his own at all and was put on a type of ventilation CPAP (continuous positive airway pressure) which uses low pressure oxygen to keep open the airways making breathing easier. I hated it. He hated it. The docs and nurses were saying it can take time for him to get used to it but I struggled to watch him, he was struggling, he wouldn’t settle, he was making this whimpering noise. I hated it.

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Off the ventilation, struggling to breathe and the bottom pic is cpap (ugh)

I got to hold him, but only for 2 minutes as he struggled. Nik came as usual that evening and he got to hold him, but for longer. I felt so jealous! It’s ridiculous but I was desperate to hold him. I had to leave and come back later. The nurse had noticed and let me hold him again, so I felt bad… It was silly really I’d been with him the whole time.

I made Nik stay with me that night, he wanted to go home – it was fair he did have work in the morning, but I made him stay. I’m glad I did, at 3am there was a knock at the door. Our room was across from intensive care. It was a nurse. When your partner opens the door at that time to a nurse with a sad-looking face when your baby is in intensive care, you don’t tend to think all is well…and it wasn’t. He’d failed and had to be resuscitated again, they’d struggled to get him stable, again, and he was back on ventilation. We went to see him and the faithful chugging of the oscillator had returned. It was comforting. In my mind he was safe. The next day was another difficult one, he had to have three chest drains fitted throughout the day because his lungs kept puncturing, and when the evening came, he had two fits. This was harder than I thought. I’d coped up until now. But I was alone again, and he wasn’t getting better. I struggled this week and withdrew. Seth went for a CT scan on his brain which showed he’d had a stroke and was left we two small bleeds on the brain, and his lungs kept puncturing so he now has 5 chest drains. It got to the weekend and he was still struggling, Nik was there and I didn’t want to go and see him. I thought he was dying and I didn’t know what to do. The ward sister came to see me and said a few things but I remember she said “we don’t know where we’re going with Seth right now, but he’s still here and we still have options”. I cried. I slept. and then I was ok again.

Obviously I wasn’t happy or joyous…but I was back coping. It was as if Seth knew…he then started to improve everyday. The nurses would send me out for a walk for an hour a day. It helped, but sometimes i would become a bit of what i refer to as a ‘pram kicker’ (internally of course – i didn’t go round sticking peoples prams, I’m sure that would be at the very least frowned upon! it means that i would momentarily resent people wandering round the shops with their healthy children) Small steps and sometimes he took a few back wards steps, but the overall trend was in the right direction. Another 2 weeks later they took him off the ventilator again and brought him out of the coma. He coped this time – and didn’t need CPAP! He needed oxygen of course but not the horrible CPAP.

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04-09-2010 (6 months old) Tube out for the second time….still poorly but managing

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As he started to recover his personality came out. He charmed every one of the nurses- who incidentally were brilliant the whole time we were there.

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cuddles

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kisses for the cow whilst practicing sitting again

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he’s getting better…really!!!

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peekaboo

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playtime

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bathtime in intensive care

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ugh this is hard!

They learned about SCID so they could answer our questions. One day I was ill so had to stay away from Seth. He was on his own. The next day they showed me LOADS of pictures of them playing with him all day!!!

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Having cuddles with the nurse

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20-09-2010 (7 months old) Learning to sit up again

Also everyday that he was there they filled in a diary about his day (see pics below) it was amazing and although it was an awful time we really like having it. It is written to him so he can understand when he is older.

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The book

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First entry

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6 weeks after first being admitted he was ready to be transferred to Great Ormond Street. He was still very poorly so we had to have an emergency ambulance there. But we were going to the mighty great ormond street! They fix the unfixable. It’s all going to be fine!

Getting ready to go to GOSH, saying goodbye to daddy

Getting ready to go to GOSH, saying goodbye to daddy

Who is this Seth anyway?!

Being born and living with a life limiting illness (that leads your mum to write about it on the Internet) means that loads of people know your face, your diagnosis and other bits, but don’t really know you… So I though it would be nice for you readers to get to know our lad, who is more than a bubble boy. Actually I’m pretty sure Seth doesn’t consider himself to be ill. He just thinks we’re all a bit mental!

He may be stuck in a room with no where to go….but this boy still has things to do!

http://youtu.be/BisHgbuYUgU

Seth has always been a stickler for the rules..(those of you who know me will realise how  proud that makes me!!). Seth believes everything has its place and his playroom at home is managed through “one toy in…one toy out”. He often shakes his head with a tut and a sigh when other children have been in and (naturally) trashed the place.

This acceptance of rules is the bane of his fathers life at times as he is often told “not like that daddy” and daddy is often on the receiving end of a disapproving grunt and stare if something hasn’t been done as it should. Even his daily injection (which he hates) if it isn’t done on time daddy gets a good telling off!!

The bane of our lives…….firman sam – or anything fireman related….

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Favourite pyjamas (standard)

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Christmas list – everything fire or rescue related from the argos catalogue

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His BEST days EVER – a day at the firestation

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Showing the fireman how its done

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A small part of his fire engine collection. This child serious has every fire engine ever made…EVER!

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Th new addition to his rescue addiction – paw patrol!

He’s genuinely a very affectionate boy:

Totally besotted with his baby brother who arrived October 2015

Totally besotted with his baby brother who arrived October 2014

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Adores his daddy

Adores his daddy

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and the dog……who appreciates it!

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…like REALLY appreciates it

http://youtu.be/z8tDJwIcwrw

and a bit of a plonker…..

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Throwing confetti at mummy at our wedding

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CHUNK!

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Excited for Peppa Pig world

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Loves nothing more than having his hair cut....but ONLY by Vicky!

Loves nothing more than having his hair cut….but ONLY by Vicky!

and he will give anything a go…

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even a bit of posing…

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were just proud that he makes the most of his life.

Today: Turning 5 in hospital…..

Yesterday was Seth’s 5th birthday. He is in the Great North Children’s hospital in isolation. So at best he  was allowed into a room on the ward to be with his dad, baby brother, grandma and me to have a little birthday celebration. I had ordered a cake for his birthday party (which he now won’t be having) so brought it with me along with ALL his gifts from family and friends.

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Decoration by the play team in the hospital.

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Waiting for the main man to arrive – his brother clearly overly excited :/

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Opening presents

Happy with his Madagascar DVD

Happy with his Madagascar DVD

A fireman sam DVD - one that he actually doesn't have!

A fireman sam DVD – one that he actually doesn’t have!

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Thats a green dog…..called Stevie after our dog at home

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Caaake! The thing he was most excited about for his party – Paw Patrol Cake….even though he doesn’t like cake!

Dressed in his finest mis-matching joggers and t-shirt with toothpaste round his mouth, Seth managed to open his gifts, cut his cake, and identify that he had indeed received “loads” (how people found so many things this child doesn’t already have I don’t know!), before he began to go a little quiet and tired. He asked to go back to his room. This instantly made me concerned and not long after he spiked a temperature of 38.3 and spent the rest of the day in bed. His respiratory rate, blood pressure and heart rate where very high which is consistent with a high temperature. Despite burning up Seth was complaining of feeling cold.  The birthday was over (for now).

Staff were in and out of his room most of the day and it was noted that the infection in his lungs may be fungal infection – which is very hard to treat in someone who is neutrophenic (no white cells, therefore no ability to fight infection). So they began antibiotics to treat this whilst they awaited the results of a BAL (Bronchoalveolar lavage) from Friday last week.

Seth made efforts to play with some of his presents and watch a DVD, but he was feeling so poorly he didn’t manage much. The doctor was concerned about his presentation and suggested that if his oxygen level began to drop they would need to consult the intensive care unit for early intervention. Luckily his oxygen level was the only thing that stayed good.

Although him going into the room to open his presents did not trigger his temperature, we decided that we will no longer bring him out of his room. It is too dangerous. The ward staff agreed and Seth is now in total isolation. This means that only Nik, me and one other named person are allowed in his room and we have to wear a gown to cover our clothes at all times. We have to check our temperature and if it is increased we are not allowed contact with Seth.

What is going to be hardest for Seth though is no contact at all with his baby brother. Seth’s always asks to see Hugo before anyone else when he comes in from school. Now they have chats and conspire via FaceTime.

Brotherly love

Brotherly love

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Seth and Hugo having a wee chat

The next day (17/02/14) – Seth had improved a lot. His temperature had come down and appeared to be consistently staying down. He was also much more himself, still quiet, but he managed to play today and eat a bit of food (which is good as he has gone from 11.5kg to 11.2kg in less than a week).

Today we have had a meeting with Seth’s main consultant. Dr Andy Gennery (click here to see a clip of Andy talking about BMT). Andy confirmed what we thought and the only option for us now is a second bone marrow transplant, this time it will follow 8 days of chemotherapy. But Seth is too ill at the minute to survive a transplant, therefore we need him to get better and then a transplant will be arranged as soon as possible. The marrow will come from either Nik or I because advancements in medicine mean that they can manipulate the bone marrow taking out what will cause harm and leave in cells that he needs and that will help him fight infection. This means that there is a longer period where he is at risk, but if it works we should not have issues with Graft Versus Host Disease

So the next 8 weeks couldn’t be more crucial.