T+335

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:

https://www.facebook.com/notes/bubble-foundation-uk/denise-we-will-all-miss-you/10153593400104716

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.

 http://youtu.be/RYAnd5tSZJ8 – 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!

 

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+272….

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.

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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.

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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.

T+179

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.

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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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T+161

160 days since transplant day!!!! How has that happened?!!?! I am very sorry it has been so long since I have last provided an update. It wasn’t my intention to leave things so long, but being at home is just total brilliant chaos!!

After coming home everything was nice and settled for the first week. We went back to Newcastle for a check up and again they were happy with him. He was booked in to have his apheresis line taken out on the Friday of the following week. However, the line was not causing any problems and Seth was still requiring blood tests regularly. Also although his need for blood and platelet transfusions had reduced we were still not confident he would not start dropping again. So, the decision was made to postpone the operation to have the line out for a bit longer just to be sure….

However, on the Monday of the very next week his line was accessed for blood tests and shortly after Seth approached his dad with his t-shirt up saying “my line is leaking”. He was totally unfazed by the blood coming out of his line and going everywhere. Upon inspection the line had split near the top where it entered Seth’s body. We knew that this would be unrepairable so prepared ourselves for a trip to Newcastle to have it out.

First stop though is always the local hospital so that they can do initial checks and liaise with Seth’s consultant in Newcastle with regards to a plan. Also he was put on antibiotics immediately in case an infection had got into the line through the break. 24 hours later we were back on the road to Newcastle. The next day the line was taken out and luckily because Seth had not had a temperature he was able to return home the next afternoon. For the first time in a long time we had a fairly straight forward trip to a hospital, no unexpected long-term stays. BRILLIANT!!!

back in newcastle waiting for the op

school work !

the line- the blue clamp next to his skin is stopping the line from bleeding.

ready for the op!

All gone!!!

Being at home is fantastic for all of us. However, Seth is now more of an energetic, curious 5-year-old than he ever has been. He wants new challenges and new experiences like any young child, which can sometimes be difficult when he still has to remain isolated from other children and busy places. We have been pursuing home schooling via the school he is registered with and whilst waiting for that I have been trying to home school him so that he does not fall behind his peers. I think he will have enough to deal with socially when he finally goes to school so we like to try to reduce any other sources of stress for him.

Learning numbers playing Bingo

making bread

fine motor skills practice poking pipe cleaners through a sieve

learning about dinosaurs

collecting leaves , learning about autumn

  

making trees with a straw and water paints

Health wise he has been great. No illnesses or temperatures so far. So we are really pleased with that! Immunology wise we are still waiting for confirmation as to whether or not the Thymus is working. It is quite a source of stress for me at the moment. My understanding is that there is no definitive way to confirm whether or not anyone has a functioning Thymus, you just have to wait for ‘educated’ T cells to appear. This can be monitored via 3 things – which I cannot now remember the specifics. However, one is increased T cell numbers. This last week Seth’s T cell numbers have doubled – but this can happen also if he has in infection that he is fighting – then the uneducated T cells would multiply. Also there is a marker in the blood that is monitored in percentage – this has decreased significantly over the past few weeks which does indicate a working thymus, but again it is not conclusive at this time. The third way is by detecting the educated T cells in the blood. At present there is very little evidence to suggest educated T cells. So we continue to wait. Seth having GVHD for so long prior to this transplant may simply delay the Thymus sending out new educated T cells. Or there may be irreparable damage. Wait and See – rubbish!

He has managed to get rid of Rhinovirus which is promising. He is still positive for Adeno virus but is keeping it low level, so again that is positive. His skin is fantastic! Really clear. We have managed to be able to reduce the steroids right down again and we have not seen the GVHD rash in a few weeks!

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As a parent in this situation you have to manage your own emotions and stresses, trying to stay realistic and not to allow optimism to overcome you. With Seth being better in himself than he has ever been it is difficult to prevent myself from getting too comfortable, forgetting that this is not over yet. Also you find yourself trying to manage other people’s expectations as well. Everyone historically knows Seth as a child with physical struggles because of his health. They knew him as a child that did not run about, lacked confidence and tired easily. Now they see this normal (albeit small) 5-year-old energetic cheeky boy running around, so its difficult for us to highlight that we still do not know if he will be ok.

When we arrived in Newcastle in January this year, Hugo was only just 3 months old……he turns 1 in 3 days!!! What a year!



  

Today: T+112!!

It’s all a bit strange at the moment, time seems to be going so quick, Hugo is 10 months old! He was only 3 months when we first embarked on our Newcastle leg of Seth’s journey. My 12 months of maternity leave is due to end in a months time. Luckily I have been able to apply for addition time off, so i am not returning to work until January. That will give us time to return home and start living as a proper family again!

Over the past few weeks Seth has really settled into living with us all again. However, he does ask about going home quite a lot. He misses his home and his friends. I am at home at the moment getting the house ready for his return and when we speak on FaceTime he asks for a tour of the house and to look at his favourite toys!

With regards to his eating we are seeing an improvement! He is now eating reasonably well. Most days he eats lunch and dinner. It is still only small amounts however its regular eating. He still struggles psychologically though. He will say that his tummy is rumbling. But then when sat with the food in front of him he uses a number of different distractions techniques to delay putting the food in his mouth. Once he does have that first bite he eats well. We just keep eating our food and let him go through this process. It does seem to be getting a little shorter.

Immunology wise we are pleased that his bone marrow is still showing 100% donor. This means that all the cells in his bone marrow are Nik’s. They test this every month to see the strength of the graft. So far so good!!!
This week we have noticed that his cheeks are a little red and a patch on his arm. This looks like a bit of skin Graft Versus Host disease again. He has been given some topical steroid cream to put on the effect areas and we hope that will be enough. Over the past few weeks they have weaned him off the majority of his anti-rejection (immune suppressant) medication. He was on Tacrolimus, Mycophenolate Mofetil and Prednisolone. He is now only on 2.5mg of Prednisolone on alternate days. This is the smallest amount of Prednisolone he has been one ever!!!! As a restful we are continuing to see he face appear as his cheeks reduce and hopefully his belly will continue to reduce so he gets a much more normal shape.

Virus wise things are looking good. He has had 2 weeks of negative results and he is not longer on medication to treat them. We are just waiting for the all important 3rd negative! This is important as 3 negatives is what they want for Seth to be considered free of the virus – although it may come back later. Although the hope is now that he is not on any significant anti-rejection drugs his immune system will be able to fight these virus’ itself – another excellent out come of the 3rd negative result! FINGERS CROSSED!!

Were getting closer and closer to the time where we will find out whether or not Seth’s Thymus is educating the new T cells. Its something I am thinking about daily. Seth is doing so well at the moment I just want to enjoy it. All his life he has been tired and moaned a lot. Since this transplant he is like a normal boy. No moaning, no winging, loads of energy. It has made us realise that for the past 5 years he has probably felt rubbish all day, everyday. It makes me even more proud of him, as despite that he has had a go at everything put before him. I just don’t want to get too comfortable and then find out we have to get him through a Thymus transplant. If it comes back that the Thymus IS working I can start to relax! FINALLY!!!!!

Seth has been booked in to have his Apheresis line removed on 18th September, this is a big thing for us as this normally happens just before you are allowed to go home! Fingers crossed things continue to go well and we can be home in just a few weeks!!! PLEASE!!!!


  
  

T+89

A little while since my last post. Apologies for that.

However, we can now say Seth is no longer an in patient at The Great North Children’s Hospital!!! He was discharged on Thursday last week so is permanently living at the halfway house near the hospital with Daddy, Hugo and me!!!!


  
  
Seth is settling back into family life well and has FINALLY started to eat. It is very small amounts and not everyday, but he is eating and has a good relationship with food. He is no longer getting anxious about sitting at the table or being around food. Last week we did homemade Pizza which he loved making! This was the start of him eating more, he did not eat his slice, but did eat the ham off the top. A couple of days later he ate the meat and gravy part of Shepherd’s Pie, and today he has had some yorkshire pudding, vegetables and gravy! We are really pleased with his progress. Its hard not to pay attention to him eating, we have to turn away to hide our big grins! He seems to have started eating more as we have stopped the intravenous nutrition, as he is now feeling a bit more hungry. He still has a 14 hour feed of high calorie milk over night, as we cannot risk him losing weight.


  
Being at the halfway house more and school finishing for the summer holidays means that we have had a bit more time to do things. We have been to a local centre for disabled children called the Alan Shearer Centre (founded by a local footballer/soccer player). Here we can hire out sensory rooms or their hydrotherapy pool, and they have an outside play area which, so far, has not had any children playing on it so Seth has been able to use it. We are not at the stage where he can use the hydrotherapy pool just yet. But we used the sensory room which was great for both boys. They had a brilliant time.


  
  
  
  
  
Medically Seth is doing really well, hence the discharge! He is still positive for the HHV6 virus but the level is still low so it’s not a major concern at the moment. He is no longer positive for the Adeno virus, although that has come back once. He is still on the drug that treats both of these so hopefully they will remain under control until his immune system can deal with them itself.

Seth’s skin is amazing still. The GVHD rash appears to have gone and we have been able to stop one of the anti-rejection drugs. He is still on steroids as a management but only at 2.5mg on alternate days – the lowest he has ever been on! He is on a third anti rejection drug called Tacerolimus but he will stay on that for a while after transplant. The next step is to ‘stress’ test him (medically) to see if he is able to produce his own steroid. Because he has been on steroids for so long (about 4 years) his body may have stopped producing it – which means he would need to remain on oral steroids at the current level to match what the body naturally produces.

These next pictures I found this week. They are of Seth 1 year ago! What an amazing transformation!  
 All in all his progress has been brilliant so far. It is hard not to get over excited about his future, but we are certainly more relaxed about things. The next major worry is whether or not his thymus will educate the T cells his bone marrow is now producing. If it does that will be a MASSIVE relief for Nik and I. If not we have to look at a Thymus transplant at Great Ormond Street Hospital. I don’t know what that entails at the moment as I am hoping it will not be necessary. They will test his T cells around 120 days post transplant so see what is happening. So another 34 days to wait!

Today: T+68

Sorry it has been a little while! I started writing this post, and then my laptop had a falling out with the wifi. However, they are now communicating again so i can continue!!

In the last couple of weeks we have had one brilliant change……we have been allocated a halfway house. Hugo and I are now living at the house. Seth is allowed to be at the house all day, unless he needs medication or a transfusion. However, he must stay at the hospital at night because he still has to have TPN (intravenous nutrition). He is still not eating any food. He is showing interest in food which is an improvement so hopefully as each day passes we will get another day closer to him eating again. He is tolerating milk better now so we are able to increase it 1 ml every other day which means he is getting better nutrition through his gut.


  
In himself Seth is OK. His mood is good, however, it is subdued. When we first got the halfway house, Seth lost a bit of his sparkle. It was a little like it was a bit too much for him. He also found Hugo difficult to fathom. He isnot the peaceful little newborn Seth remembers. He now takes Seth’s toys, and does not understand the rules of sharing. Hugo also demands a lot of attention, he has to be watched. Seth isn’t used to that. He has not had the opportunity to grown with Hugo. So we make a big effort everyday to make sure we spend quality time giving Seth attention alone and with Hugo.


His skin is brilliant at the moment!!! The GVHD rash seems under control, we have been able to reduce the steroids so he is on 5mg one day and 0mg the next. This is still IV at this time, but will change to oral when we drop next time which will be to 2.5mg one day 0mg the next.

The Adeno virus is back, but only at a low level. The HHV6 is still at the same level. But neither are affecting him. So at the moment we are not very worried about them – they are managed and hopefully as we reduce the suppression his immune system should come up more and be able to deal with the virus’.

So things seem to be going well at the moment. Things are just taking time. We have worries, but they could be worse.