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!



I know it hasn’t been that long since my last but I though I would do more of a medical update for those who are interested in the medical side of things.

Before I start though, today is a sad day as the President of the Bubble Foundation sadly passed away. Denise Robertson worked tirelessly with the charity for over 20 years helping many children like Seth and parents like Nik and I deal with SCID and a bone marrow transplant.

Here is a word from the Bubble Foundation:

So this week Seth went back to The Great North Children’s hospital for a routine appointment with his consultant, Dr Andy Gennery. Whilst there he had a Synacthen test. This is a test to ascertain whether or not the body is producing a hormone known as Cortisol. Cortisol is important because it helps to regulate blood pressure, the immune system helps the body deal with stress and regulate blood sugar level. The Synacthen test uses a chemical to stimulate the glands into producing Cortisol. It requires three blood tests throughout a day. The results take a bit of time to come back so we don’t know if Seth is producing Cortisol.

The importance of this for Seth is steroids! Seth has been on Prednisolone, a steroid that is a synthetic Cortisol since he was 6 months old, sometimes prolonged use of Predisolone can cause the body to stop pricing Cortisol. At times he has been on a very large amount of this in order to try and control the Graft Versus Host Disease that he had prior to this transplant. As a result Seth is, as you know, very small for his age – he is currently just in 2 to 3 years old clothing, when he is 6 years old. He also has soft bones prone to breaking as a result of prolonged steroid use. So really, we would like for him to never have to use them again – they have been a necessary evil and been a primary medication for Seth’s treatment.

So again we wait – but this time, I am not thinking about it daily/hourly or getting anxious – I might even forget about it……. well maybe not quite!

Also during this appointment Andy made a decision about the immunoglobulin that I give Seth on a weekly basis. This involves two needles being put into his legs just under the skin (subcutaneously), the medication is a thick liquid and stings when it starts infusing into his legs so he gets quite upset. But he has needed it since he was diagnosed on Friday 13th August 2010. But today – 294 weeks later – he had his last dose! This has made Seth a very happy boy! He hates it, he cries when we put the needles in until about 10 minutes after it has started, and then again taking the stickers off and the needles out at the end. This was worse when his skin was bad with the GVHD. – But also I think Daddy is grateful for the end – maybe he will grow back some arm hair. Haha.

We have also been able to stop 2 more of Seth’s medicines. This means that I have been able to send more stuff to the shed cleaning out the medicine cupboard!


two boxes head for the shed!




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:298 Boy turns 6!!

So a quick and cheeky update no The past two weeks have been very busy for our little soldier! He has had his 6th Birthday! A very different experience than last year when he was allowed out of the room to open his presents, but he got ill whilst he was out so had to go back to his room. That was the last time he left his room until after transplant.

This year he had a party with a children’s entertainer, cake, food, music and face painting!


Tom and Jerry AND Octonauts cake – because he couldn’t decide!!! (not made by mummy – Cake making is NOT a talent of mine! haha


Helping make the food for the buffet!



Doing tricks with ‘Mr Custard’!





Playing with his new toys


A VERY serious game of Chairs!


Out and about…boys and their Wellies!



Its been 38 days since my last update and during that time we have had a wonderful christmas and welcomed in 2016!

I hope you all enjoyed the festive season. I know some of my readers will have spent it in hospital nursing their own children through bone marrow transplants, but I hope that everything is going smoothly for you all. I remember spending Seth’s first christmas in Great Ormond Street. We were lucky enough that he had his transplant 8 weeks earlier so we were given permission to return home for the day. It was a 2 hour drive so it was a busy day but it was lovely to be home all together. A very quiet Christmas Day but it was everything we wanted at the time. As you can see from the photo’s at the time Seth was on a very high dose of steroid as he had already got GVHD.


Christmas 2010 – Just after transplant

Last Christmas, i will be honest, I spoiled Seth. I couldn’t admit why, but I wasn’t convinced he would get another Christmas. Although a few weeks before I had asked Seth’s consultant if I was watching him die, and was assured I wasn’t; I still was not convinced. My dad had come over for Christmas as he lived abroad, it was a good happy Christmas, but there was a dull ache or worry inside me.


Christmas 2014 – When things had started to go wrong

Then fast forward to Christmas 2015!! The best one yet! A child’s first Christmas is considered memorable, as should be every single one after…… we always thought we had great Christmas’ with Seth, but this one proves that the rest he did not have the energy to enjoy fully. Don’t get me wrong, I know that there are children in the world who’s Christmas and life do are far from as privileged as Seth. But as a parent you want to do what you can to make everything memorable. When he was feeling so rubbish, that ability was taken away from us.

December was a flurry of excitement for Seth. This is the first year he has really got excited about the build up, he talked about Santa and his Elves a lot and made up stories about what they would be doing. He loved counting down to ‘the big day’! On Christmas Eve I thought he might actually explode!!! He put a carrot and some food out for Rudolph and the rest of the reindeers, and a bottle of beer and mince pie for Santa. I was surprised at how easily he went to sleep and that he did not wake us up too early in the morning! When we went downstairs he entered the living room and whispered to himself “he’s been” with a big smile! It was amazing to see!


We then said goodbye to 2015. As we all do I reflected on the year, and I have to say…… what an amazing year! Starting the year with devastating news, we did not think Seth would see 2016, and yet I am sat her typing this with him asleep upstairs after he has spent the day at school! We never thought we could have got this far! Also 2015 was the year we saw amazing support for #wearyellowforseth from around the world. It helped us through some very hard times. We have recently seen another increase in interest as Seth’s video has been posted on Ellen Nation. You can vote by pressing on the green up arrow above the video (if you like) for it to be on the Ellen Show.

Seth is back in school full time now, mixing with the class like an ordinary healthy child. He loves it. He started the year just going a few hours a day, but then when he spent the whole day there for a dinosaur visitor he did really well and he has done full days since. He got a certificate in the assembly at the end of the first full week for trying hard at everything and for bringing his smile to school.

I have returned to work full time as well, so it’s strange not being home all day with the boys, but it is nice to get a bit of normality – although there are never enough hours in the day!!!! So apologies if I don’t get updates all that regularly.

Energy wise Seth is improving all the time. His hyper mobility is still there and he does still struggle to jump and run, but he is doing more and more each week.

His skin is still very good, we haven’t seen any signs of GVHD (touch wood).

His hair had started to fall out again and the white patches were once again growing. This was making me feel really anxious, this happened on the build up to his last transplant finally failing. However, it turns out his scalp has overgrown skin, almost like cradle cap (but not) which is common for people who have had a compromised immune system for a long period of time. At present we are trying to treat it with a special shampoo, it seems to be improving slowly. If it doesn’t work though we will have to try a sort of acid that we would need to put on his head for an hour a day.

Immunology wise things are great! We had a visit to Newcastle today to see Andy and he is very pleased with him, he says that its now time to concentrate more on the secondary concerns like his growth and weight. Seth has been growing in the last 6 months, but his weight has been pretty static, he is currently 12.8kg, only 2kg heavier that he was a year ago and three months ago he was 13.6kg. He is still on an overnight milk feed of 500ml (a high calorie milk feed) and his relationship with food has improved significantly. He is now eating 3 meals a day, however, he won’t eat anything with sauce so getting high calorie food into him is a NIGHTMARE! His favourite foods are Carrots, ham sandwich (no butter), Popadoms, Popcorn, sliced ham and cous cous…..its really difficult to get anything else in him. So we keep persevering and encouraging to try new things.

I no longer take it day by day, i am still on edge if something happens, but now its more about giving Seth the opportunity to live, rather than fighting for his life.


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)




A shorter time since my last update. Seth’s health appears to be going from strength to strength and we are slowly getting used to our cheeky, energetic 5 year old that we have never before seen!

First haircut since he lost it all with chemo. It wasn't really all that long, just messy. So we had it tidied up!

First haircut since he lost it all with chemo. It wasn’t really all that long, just messy. So we had it tidied up!

Things are still going in the right direction, albeit slowly. A couple of weeks ago they took the bloods for the Thymus check and the numbers are still not enough to give a conclusive result. However, there does appear to be a few more ‘mature’ T cells. So were hoping that this is a sign that things are changing, slowly! Also he has grown FINALLY! 6 or 7cm since January.

He is now eating pretty well. He has three meals a day, small portions but he finishes them. We are currently encouraging him to try different things, especially things with a sauce. This is often met with some anxiety from Seth and he often takes a break from the table, but then returns and finishes the meal. The last few days he has come on leaps and bounds with this. The best way we can get him to eat – is by getting him to cook it with us. This week he has made us Lasagne and Pizza.

In himself he is ready to go to school and be with other children. He is under stimulated at home. We try our best but it’s the same home everyday. We get him out in the garden and to the local park when it is empty. But it’s not the same as being surrounded by your peers and stimulated 7 hours a day 5 days a week. Hopefully, his cells will come up soon and he can go back to school in January. He will be going to a new school and restarting reception year because he has missed so much.

Also, just as Seth was going into isolation, what seems like a long time ago. I posted that we did not have a family picture, and a member of staff took one of the 4 of us in a room at the hospital. It’s not the most flattering family picture. But it is all we had and at the time we were not sure we would get the opportunity to take another.

The only family photo we had.

The only family photo we had.

So, Hugo had a cake smash photo shoot booked for his first birthday. The photographer kindly let us use this session to get some family pictures. We love them!

(photo credit: rebecca jayne photography)

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At the moment he is having bloods taken every other week to monitor his full blood count, liver, kidney function, potassium, magnesium, white blood cells etc and so far things are pretty stable. He is currently on less medication that he has been on since he was 6 months old! Also once a week I give him an infusion into his legs (subcutaneously) of anti-bodies. Known as IVIG.

In other news…… Seth was the winner of the Northamptonshire Pride Award for Courage. Unfortunately, he was unable to attend the award ceremony himself due to isolation. However, his daddy got an evening out at the awards and collected it on his behalf.


The Bubble Foundation, which has given so much to children like Seth has launched a campaign this week. Asking people to posts pictures of they #bubblesforthebubble. In our opinion the Bubble Foundation enabled Seth to have ECP treatment for the 12 months before his transplant, they provided Hugo and me with accommodation throughout Seth’s time in hospital so that we didn’t have to live 4 hours away. They do this for ALL families on the ward. They fund important research to help save the lives of children just like Seth. Here are Seth and Hugo with their #bubblesforthebubble.

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