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?!?!

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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?

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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