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!!!!

  
  

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.

Today: T+49

49 days post transplant and Seth is doing ok really. Better than expected which is great!!! It’s June and we are halfway through 2015.

I have had a bit of time at home the last week as Hugo has had a cough and I had to return to the dentist (joy!). This was hard leaving Seth, but Hugo thrived. It made me realise how much this effects him as well as Seth. He is only a baby but he has loved seeing my best friends little boy this week (who is 2 weeks younger than Hugo). It got me thinking about what this year should have been. I should have been on maternity leave at home, taking my new baby to baby groups, meeting my friends and spending time helping our new baby grow and become part of our family.

Instead, we have spent the first half of this year giving Seth a chance. So I think it is maternity leave time well spent. Hurrah to the first half of 2015.

In himself, Seth is doing great. He is full of energy jumping all over daddy. It is clear he has a bit of cabin fever – in that he is bored of being in his hospital room for most of the day. He has time in the physiotherapy gym for 3 half hour sessions a week which he absolutely loves. We also get out to the park and make boats to race on the water.

Ryder had a hickman line fitted this week. Doctor Seth checked his bloods – all with a sterilise field and alcohol wipes – ‘got to be clean daddy’.

Walking the ‘snake’ in physiotherapy

  

One of Seth’s favourite physiotherapy exercises – racing to move the beanbag animals from one place to another faster than daddy or mummy!

Today we went out for the longest time yet, about 2 and a half hours and we went to walk around the fair ground that has been set up. Seth loves looking at it (he cannot go on!!) and he keeps talking about how when he is better he is going to go on the fair. He has also become interested in a skate park that we pass everyday and is saying he wants to ride his scooter on it.

Greating Grandma speeding ahead on his scooter. He had not seen her since transplant when the chemo was making him feel pretty ill. So he did not speak to her.

It is so great to see him how he is at the moment. So full of life. He has always been a happy, smiling boy, but he has never quite been a cheeky child of his age. Until now. I sometimes find my self watching him and smiling that finally I am seeing a child emerge.

Hugo learning about Seth’s face – through a protective rain cover…

Infections:

At the moment Seth is testing positive for Noro Virus,  Adeno Virus and the Human Herpes Virus 6. He has been on treatment for the HHV6 infection for 2 weeks, initially the virus went from 10 to the 5 in the blood to 10 to the 3, but it has now gone back up to 10 to the 6. There is an alternative treatment which also treats Adeno virus which he is now on. This is a once a week treatment to start with and will then drop to once a fortnight. The positive thing is that at the moment he is not showing any signs of illness. No temperature’s or feeling unwell! – yey!! He is vomiting every day, this is usually just once a day and we are not sure which is causing it. It could be the mentioned virus’ or low tolerance for milk feeds. But it is not significant so at the moment we are just monitoring it.

Hands:

Look at these bad boys! No more bandages. He has better movement in his fingers that he had before because the skin is not thickened from GVHD. At the moment his old damaged nails are growing out and new nails are coming through. This is common as when you are really ill the body stops doing things that are not totally necessary – like growing nails.

       At the moment Seth is still needing platelet and blood transfusions, but these are at the moment getting less frequent. I don’t want to get ahead of myself, but, I would love for a time to come where he does not need them again. He has been having 3 or 4 weekly blood transfusions since September 2014 and platelet transfusions since October/November at a similar rate.

So, things have changed so much in the last 6 months – surely as a BMT parent 49 days after transplant I can start to relax right?! Well, maybe not quite – I have graphs so I can see any trends or changes in his stool output, Red Blood Cell level, Platelet Level and Neutrophil levels. This is probably not necessary – but as I have said before you are sometimes armed with too much information. I have really found the graphs helpful for me to see the overall picture, rather than panicking because his neutrophils have dropped two days in a row, or he is still needing blood transfusions.

At the minute I feel a bit like we are sat waiting for a train that we don’t know where it’s going. We have a few virus’, we have a little bit go GVHD, we don’t know if the Thymus is working or not. Only time will tell on these. Today, these problems look like they are being managed….but, what will tomorrow bring?

Don’t get complacent and take it day by day

Today: T+18

A few days since my last update, and have there been any changes.

Well only this little thing…..

Yes – Seth has been dropped from RED isolation to Purple.

As you can see the rules on cleanliness are still strict. But we can give him kisses and don’t have to curb our arms as much. He has not been allowed outside yet because he is still on oxygen and still on pain relief 24 hours a day.

Immunology:

It’s good, the Neutrophils are still rising but they have slowed down a lot. We are now at 1.87. Which is 1.86 more than he has had this year!!! On Saturday blood was taken to send away to test the new cells and see if the graft is Nik’s – we hope that it is. If the cells are Seth’s or the previous graft then his marrow has rejected this transplant. However, the way things are going at the moment that is looking highly unlikely.

Hands:

the difference in his hands over the past 10 days – starting to breakdown, at their worst, and now, getting better.

They are starting to get better. Now he has an anaesthetist come up when he is having his dressing changed who basically gives him Ketamine and Midazolam as needed. Last time he had quite a large amount. But it meant we could clean his hands and get some of the dead skin off lowering the risk of infection. Afterwards he  was a bit out of it and at one point was laughing at me because i had 3 eyes and looked like an Alien. The hands are definitely beginning to heel. New skin is present, so its just time.

Lungs: Seth is still needing Oxygen. However, we are now weaning him off it a little each day. At his highest requirement he was on 2l of Oxygen. Now he is on 0.2 during the day and 0.4 when asleep. This is good news as it suggests that the new immune system is not currently causing problems in his lungs, and it is another step closer to getting through this.

Everything at the moment appears to be going in the right direction. Doctors are cautiously happy with his progress so far. To date he has exceeded all our expectations with his strength and his little personality is back in full swing. He even started having school lessons again this week!

insisting on playing even though it really is exhausting

nap time on his playmat seems to have become a ‘thing’ he just loves being out of his bed

But, i am sure other BMT parents will know – especially those embarking on a second or third transplant – that when things go well you want to relax but can’t. At the moment we have to wait and see everyday if anything changes. We have another 6 is weeks before we can start to relax a little because until then we worry about the new graft causing problems with his breathing, his liver, or GVHD. Even when that time has past we have until day 120 (or there about) to wait and see if Seth’s thymus is still working. If it is not although his bone marrow will be producing baby t cells, his thymus won’t be educating them so they will not work. As Seth had Graft Versus Host Disease for so long it is a worry that his Thymus may not be working. Which will mean a Thymic transplant.

Then there is the ongoing worry about him picking up an infection. Yes his immunity is better than it was but he is still quite a way below the normal range and what he has will not be working as effective as a normal immune system. These are all things that we just have to wait and see what happens day by day.

Today: This will be quick…it’s only been a week…although this is Seth….

Seth is continuing to improve and it totally back to his normal cheeky self! He’s current phrase is if he is asked to do something to shrug his shoulders and say “alright bossy!” sigh…

Here’s how he’s been spending his time:

Being a Ninja with the play specialist

Using the suction as his ninja weapon!

Taking time out to watch some TV after a busy day

A bit of golf to pass the time

A sunday roast….with gravy in a mug for dipping purposes (thats the northerner in him!)

Talking to Hugo via Facetime (what would we do without technology!)

Doing his own obs – taking his own temperature

Concentrating!

Check out the guns!

A lot of people ask Nik and I how we get through this, and its difficult to answer. We’re no different to any other parent out there I don’t think. You just get on with things. We’re helped by having family and friends who help us every step of the way. 

I’m not naturally someone who relies on wishes, prayers and other things that aren’t tangible. For me thats a risk, it’s not tangible or measurable. 

My gods are numbers. Numbers in the form of Seth’s daily blood results. As a parent in this situation you become knowledgable about the meaning of the blood that is taken from your child at 6am every morning. By 10am you wait for the nurse to come in and fill in the sheet you keep on the wall to look for patterns and changes.

The 2 ‘gods’ of this page are the ALTs and Bilirubin. These levels are related to liver function and the issues we’ve been having with Seth’s gallbladder. Were looking for these numbers to come down. As you can see on the 17th Feb when Seth had become quite unwell on the afternoon of 16th Feb his levels have jumped up high. He was also very yellow that day.

On this sheet you can see that Seth’s Neut (Neutrophils – white blood cells) are below 1. The numbers our looking at here indicate that he has virtually no white blood cells. CRP (C-Reactive Protein) – This is a infection marker in the blood. So when you have an infection this level will rise, although it tends to work 12+ hours behind the patients clinical signs. As you can see on 17th Feb this number also significantly increased.

Knowing about this and being a major geek about immunology helps me cope. It gives me control back in a situation that we didn’t plan for. It would be easy for me to feel sorry for myself – why do i get a sick kid?….but this isn’t about me. I’m not sick. I made a choice to be a parent and that means my job is to do what i can to be there for Seth.

 We have two children, Seth and his baby brother Hugo who is 4 months old. Being at the hospital is hard on Hugo as he ends up spending far too much time in his pram or being held whilst in a hospital waiting room. So this week I have come home to give him a break. It’s obviously nice sleeping in my own bed (when Hugo lets me sleep that is!).

 Seth continues to be really well and I get videos of him making the most of his time (see below for some examples). 

 Stealing the HCA’s water (as a ninja obviously!!): http://youtu.be/WCp7NZ4kEuw

Moving rooms – Seth had to move into a new room this week because he was in a room with a special filter system for babies in cots, a baby was coming in so his room was needed for them. Seth decided he should move into his room on his scooter! http://youtu.be/zPv45aQvI7Q 

 So here we are ploddin along waiting to get to transplant…..or are we. Of course you don’t all know Seth but those that do are aware that he doesn’t like to conform to expectation!!! Why should he be any different in this situation?! 

The consultants have been having a few confusing, head scratching conversations about our boy recently.

 They had previously sent of a sample of Seth’s current (post transplant) bone marrow to GOSH to compare it with his bone marrow prior to his original transplant. The aim of this was to identify which parts of his current bone marrow is his and which parts are from the donor. 

 A bit of history (i will try and keep it simple and provide links to terms you may not be familiar with): Seth had no T cells prior to transplant but had his own Neutrophils and B Cells (although without T cells his B cells wouldn’t work). Normally the patient has chemotherapy which wipes the entire bone marrow, and then the donor’s immune system comes in and takes its place. So in a normal transplant the new bone marrow would be entirely donor cells. 

Seth, however, had a transplant without chemotherapy because he was too ill to survive chemo. Because he had no T cells he was in the best position to receive this type of transplant as he had nothing to fight the donor cells. 

 So it was expected that when they look at his bone marrow now he would have donor T cells, but his own Neutrophils.

HOWEVER….of course nothing goes as plans…and it appears that Seth’s bone marrow is 96% donor (the split is different but without confusing things its WAAAAAAY higher than expected). 

They’re not sure what’s going on but have two possible explanations:

1. The donor T cells are still rogue and have gone to the bone marrow and been attacking that. This would explain his recent inability to maintain, neutrophils, platelets or red blood cells. 

2. The previous stem cell transplant has started to take over his bone marrow and make it it’s own (basically sorting itself out and begin in to behave). 

So the plan now?!

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!! 

Whilst his bone marrow is doing all this, or not. They will continue to prepare for transplant. In 3 weeks it’s a CT under general anaesthetic with a bone marrow sample being taken at the same time. The CT scan is to check the infection in his chest to make sure they are controlling it. Then a week or so later he will have his gallbladder removed- the anaesthetist will need the CT results to ensure that Seth is at as little risk as possible during the op.

Then all being well we go to transplant 4-6 weeks later. But hopefully more like 4 weeks.

Transplant is incredibly risky. But if we want Seth to have any chance this is what we have to do.

Keep an eye out in the next few days for a #wearyellowforseth announcement.