Today: T-5

Another day closer and this morning I had a 7.15am FaceTime chat with Seth who was bright as a button and wanted to complain that Daddy was trying to get him to go back to sleep by saying it was not morning! Unfortunately Daddy slipped up when he said Good Morning to the cleaner – Seth does not miss a trick!! Seth was also very excited to tell me that he had not had one temperature over night. He had needed Oxygen throughout the night, but other than that his presentation was great!

Bloods today also showed some improvement, better liver function and the infection marker in his blood was the same – so atlas it had not gone up!

Today Seth has been up and about playing, making fire engines out of lego, and at one point Adventure Bay (Paw Patrol) and Pontypandy (Fireman Sam) came together to stop Teenage Mutant Turtle Raphael kidnapping Dilys (off Fireman Sam).  O the drama!

Paw Patrol and Fireman Sam save the day!

Paw Patrol and Fireman Sam save the day!

Concentrating on the lego fire engine!

Concentrating on the lego fire engine!

AND this afternoon he declared “I am hungry” and ordered a bowl of macaroni cheese. We thought he would have one piece and leave the rest as he would normally. Nik said to him that for every piece of pasta he ate he could pull a sticker of his arm (Seth finds this very amusing!) – half an hour later he had finished the bowl!!!

All finished! Get those stickers Daddy!!!

All finished! Get those stickers Daddy!!!

  

So today Seth has been an entirely different child and back to his normal happy self. Who knows what will happen over the next 24 hours. But at least he has had a bit of a break from feeling rubbish today.

Pulling his pretend grumpy face because he has to have a bath!

Pulling his pretend grumpy face because he has to have a bath!

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik's dad took Hugo for a walk.

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik’s dad took Hugo for a walk.

Transplant wise we are continuing with the protocol and today was day 3 of Treosulfan and day 2 of Fludarabine. Today Nik started GCSF injections to make his bone marrow produce more cells in preparation for harvesting on Thursday. Feedback from Nik was that it stung a little….. I am sure he will cope!

Now the chemo has started we are doing what we can to reduce the side effects, such as bathing him 3 times a day and making sure his skin and mouth are cleaned regularly. However, the chemo will cause sickness and hair loss among other things, which are likely to start about a week after chemo has finished. I am ok with the hair loss, it is part of the programme and it will grow back. But i will miss his eyelashes! They are amazing and i don’t know if they will grow back the same!!!

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Those eyelashes!!

Those eyelashes!!

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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.

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.