Today: T+54

As time goes on and Seth still receives gifts and letters in the post and messages through various media wishing him well. We feel grateful for all the support he has received. This week has brought a new surprise. A letter from our local Member of Parliament, and a second letter from the Prime Minister, David Cameron. It is nice to know that Seth’s story has been heard by so many and will possibly help others dealing with Primary Immune Deficiencies and/or Bone Marrow Transplants.

As I have previously said, the Bone Marrow Transplant Unit at the Great North Children’s Hospital is supported by The Bubble Foundation, an incredibly small but amazing non-profit set up to support children with Seth’s illness, Severe Combined Immune Deficiency. However, the unit transplants children who suffer not only with immune problems but any other difficulty that can be cured or helped by a bone marrow transplant, such as leukaemia and childhood arthritis. These children also benefit from the great work of this charity. Speaking to other families on the unit also opens your eyes as to how different every journey through transplant can be. I have discovered that with leukaemia a small amount of Graft Versus Host Disease can be a good thing as it can prevent the leukaemia from returning, which is the exact opposite of what we hope for with our transplant! As there has been so much interest in the charities supporting Seth I will do a blog entry (separate to this one) highlighting the support we have had so far. Also I have been contacted by quite a number of families who have themselves been through the bone marrow transplant journey and I thought it would be nice to have a blog post dedicated to helping families prepare for transplant that everyone can add their experiences to. Again this will be added in a separate blog.

Seth in himself is continuing to do really well.

Eating – He is still not eating consistently but on Monday he had half a yorkshire pudding (i am not sure if our readers from outside of the UK will know what that is – but we have them with a roast diner …. and they are amazing haha) and a floret and a half of broccoli. Today he had 2 plain pasta shells.

It doesn’t sound much, but his attitude towards eating is improving. We know he does not have a great relationship with food, so we have made a sign for his room door asking people not to come in if he is eating, and if they need to, not to mention the food. If people talk to him about it even if it is just “o you are having something to eat!” you can see him shut down and become anxious. He will then refuse to touch the food. Today, however, when his pasta arrived he gave a big “Whoop!’. So it is slow progress but if we can make food for him like it is the rest of us we will have won the battle i think.

He is still having milk feeds over night to give him nutrition alongside intravenous nutrition. The milk feed is now running at 23ml per hour, 4 hours on 2 hours off from 5pm to 7am. They have reduced his intravenous nutrition to 10 hours, so he has all day off his lines now other than the odd short medicine or blood/platelets if he needs them. He is still vomiting daily, and this increases when we increase his feed, but seems to settle down 3 or 4 days after.

This means that we are now waiting for a halfway house! Seth won’t be able to stay overnight but can be there during the day – which I really think will help his relationship with food – especially as Hugo LOVES eating!!!

Also I think having a bit more normality will help Seth psychologically. Over the past few weeks his behaviour has been getting a bit difficult to handle. He is not a naughty child, never has been. But he has so much energy he is bouncing round the room, switching from one activity to the next, not concentrating and pushing boundaries. It does not help that British Summertime is not to be seen and its raining everyday at the moment. We did manage to get him out on Monday to the museum again though. Which he walked round on his own showing me everything he loved.


    

Unfortunately, our family dog, who Seth loves SO much, has a tumour behind his liver. They don’t know if it is cancerous or not at the moment so we have no idea what will happen in the future. But Seth has been so interested in what is happening. He asks questions about blood tests, and needles and has made Stevie (the dog) 2 get well soon cards. Hopefully Seth will be able to see Stevie again.


Health wise, this week things seem to have improved slightly. The HHV6 virus is showing less in his blood and the Adeno virus that he was positive for last week is now negative. So the drug he is on for it appears to be working.

His skin looks great this week. The GVHD does seem to be flashing up now and then but I think the frequency is less, and it only flashes up for a minute or so and responds to the cream. Fingers crossed that this is as bad as it gets. I really hope so anyway.

Graphs

I thought I would post pictures of the graphs I have been keeping so I can monitor his progress.

Platelets. These are still dripping quite quick, but he is not needing transfusions as much as he was.

Neutrophils. these have been up and down but remain in an ok range. i would like to see them go higher though.

Red Blood Cells. These are maintaining much better than they were as you can see (the  rise is when he has had a transfusion) he is not needing these anywhere near as much as he was.

So our journey continues… i would love to live a week or a month at a time…..and go home…..i really miss home… but we are still a journey away from that…and still taking it day by day.

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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+32

So where do i begin? Its been a little while since my last post, and i apologise for that. But we have had a few developments and I needed to process one in particular and find out more information.

So the good news first!

Look at these hands!

        

An amazing improvement and finally he has his fingers back (well most of them anyway!) He still has a couple of bits to heel but they are generally really good. The first thing he did with his hand (before they had finished dressing them) was touch his head.

 

We hadn’t realised he had never felt his head. He was surprised at how it felt but says that he likes it. Losing his hair isn’t a problem for Seth. His foot is also getting better and he is walking on it confidently.

The infection level in Seth’s blood is

However,

The Human Herpes Virus 6 (HHV6) is back, low levels in his blood at the moment and we are waiting for the results of a re-test to know whether or not he will need treatment for it.

Also, on Friday we got a devastating blow. The Graft Versus Host Disease has started again in his skin. It’s obviously not caused by the same cells as it was last time as he no longer has those cells (they were from the previous graft which the chemo killed off). GVHD is when the T cells attack the recipients cells. In Seth’s case the T cells from the transplant are attacking his skin – thinking it is an infection.

At the moment it is presenting as a red rash quite angry looking around his groin and then he has patches of the rash on his arms, legs and chest.

The rash to me looks different than it did last time. Last time is was less ‘rash like’ and instead angry red skin that was dry and peeled. I don’t really remember what it looked like in the beginning. However, last time the GVHD was predominantly on his hands and feet and, at the moment these areas appear to be pretty clear. The treatment at the moment is IV steroids at a very high dose (2mg per kilo) for 5 days, clobavate ointment and tacrolimus ointment Today he was the 3rd day and doctors feel that he is responding but its a long road – we have been here before.

At the moment Nik and i just feel deflated. All of the fighting for the past 4 and a half years a second transplant, and we feel like history is just repeating itself. It is early days we know. we are just gutted.

But all this happening has made me feel a little bit like I got complacent. I am really worried about it. Things seemed to be going so well. I guess being aware of what might happen doesn’t necessarily mean that it won’t affect you when it does. That’s the nature of the bone marrow transplant it seems. I guess that is why we take it #daybyday.

In himself Seth is brilliant.

He is still tiring easily but he is motivated to do things and get out.

The physiotherapy department at the hospital has a ‘gym’ that Seth is now booked into on a Monday, Wednesday and Friday for half hour sessions. At the moment the physio is hiding animal bean bags (which Seth loves) and getting him to find them, moving about the room. We encourage him to race Daddy to really get him moving.

The increased movement makes him breathe harder so it is good exercise for his chest. He is still having his daily school sessions and is learning so much.

He is now mentioning going home a lot more. We have told him that before he goes home he has to go to a house here in Newcastle with Nik, Me and Hugo. He is happy about that, as long as he can teach Hugo how to play he is happy! However, he is still a while away from moving on.  We don’t know exactly what he needs to achieve to get there as things change daily and every child is different. We do know though that he needs to be off intravenous nutrition (TPN). This is an infusion that runs for 18 hours giving Seth all the calories and nutrition he needs. We need to replace this with milk feeds via his button and/or normal food. At the moment he is not eating and only tolerating 20 mL per hour of milk (split over 16 hours a day). To be able to come off the TPN he needs to be on 67ml per hour (this is without any food consumption). Seth has been told this and today decided to have two crisps and a mouth full of noodles. He says that tomorrow he is going to have 3 crisps! Although we will see. We are not going to pressure him. We want to encourage him to have a positive relationship with food.

Today: T+25

25 days post transplant already. How did that happen?!?!

Best text ever!!

So we now have confirmation that the immune cells we have been watching rise each day on the bloods ARE Nik’s, so the transplant has found the marrow ands grafted. So that is one hurdle overcome. This means that he has cells and is producing cells that are all donor. With regards to problems caused by the new cells we still have to wait on that one.

At the moment things are going really well. His skin is great and he is not needing any additional oxygen.

His hands are also looking amazing (in comparison to what they were). We are hoping that when his dressings next need changing (Friday), he won’t need the bandages anymore. It is likely his wrists will need a dressing, but hopefully he can have his fingers back!

        

his heel still has a little way yo go. But he is walking on it now so hopefully it won’t be too long!

We have been able to get him out everyday, going to the park for a walk. Before he returned to hospital this time, Seth hated being outside, he would complain he did not like the sun, would not want to be outside at all. Now he loves it and is saying he cannot wait to ride his scooter outside. So for us that is brilliant to see. Our little boy just wants to do normal everyday things.

Immunology wise the doctors are still happy with him. Sunday and Monday this week his levels dropped and it sent me into a mild panic. A chat with the doctor and a text to a friend who is also a parent on the ward soon eased my fears. Their cell count goes up and down often and twice daily bloods are necessary to monitor Seth’s red blood cells and platelet counts. But they also mean his immune system is under close monitoring, sometimes it might be too much information.

Seth is still needing regular platelet infusions, almost daily. This is again common at this stage of transplant so at the moment it is not a major concern and is being managed. The minimum level they allow his platelets to drop before they transfuse is 50.

I found this sheet from January – that is how long Seth has been without any immune system, amazing that he made it this far so well!

This result sheet is from January. shows how amazing it is that his neutrophils are now above 4!!!.

Above i mentioned speaking to another parent about Seth’s neutrophils. When your on a BMT ward you get to know other parents, you are all there a long time, and you are all going through a similar process. However, the reasons we are there are different and even if the diagnosis is the same, the child is different. So i would never advise people to compare their child with another, no matter how similar they seem. Speak to your doctors, use the information from other people’s experiences to help you have expectations, but be very prepared for your child’s journey to be different.

Seth’s energy levels are getting back to normal and we have had a lot of playing this week. Including some time using his bed as a mountain to run away from Daddy – dressed as a superhero – as you do!

    

Doing his own nebuliser whilst watching his favourite programs on you tube!

Today: T+20

I am not going to ‘wang’ on today….. I am going to let the pictures do the talking for the most of it.

But to start things are going well and I am allowing myself to enjoy it. It may be short-term, it may not. I’m not becoming complacent I am just enjoying today, and today is GOOD!

Neutrophils are 3.44!!!!

Seth has not required oxygen all day.

His cheeky character is back and he’s been doing school and playing games as much as he can. He still gets tired easily and is sleeping a lot. But that is to be expected at this stage.

  

He is tolerating the milk feeds so we are increasing them slowly each day.

AND MORE IMPORTANTLY for half an hour today we did this:

    

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: T+13 – unlucky for some?!?!

WELL NOT FOR US!!!!!!!!

Thanks to vivabop uk for this. we LOVE it! So true for ALL the superheros going through; have been through; or will go through BMT

I totally am putting today and yesterday down as AWESOME days. Seth has a LONG and uncertain road ahead of him. By no means is he out of the woods…..

HOWEVER, look at these numbers:

so the initial numbers we look at are the Neutrophils- 0.5 or above consistently means he can go outside (as long as he is well)

Yeah – that’s right – WE HAVE AN IMMUNE SYSTEM – and because the neutrophils are coming up it is most likely to be daddy’s magic and not the old mean and grumpy immune system from the last transplant.

These numbers are still too low for Seth to leave his bubble. But as you can see – they’re getting bigger. Slow is good as if the cells rush in they are more likely to rush about causing inflammation/Graft Versus Host Disease (bull in china shop springs to mind).

Not only do we have some cells but my boy is BACK! He is cheeky, a little obnoxious at times, sharp as you like and determined to be a normal little boy. Yesterday he was walking to and from the toilet and both days we have been playing games and doing rescues with Fireman Sam and Paw Patrol. The last two days Seth’s strength has knocked me sideways.

He still has incredibly painful hands and ulcers in his mouth, he is weak from spending so long in bed. But he is fed up of being in it. So much so that today and yesterday he didn’t want to get back in and fell asleep on his playmat on the floor (don’t worry the playmate is sterile!!!). I also got to have my first proper cuddle in 3 weeks. He is still in RED isolation so no facial touching, but a cuddle is enough. Seth gives THE BEST cuddles.

rocking the ‘new do’ – he loves it 🙈

so fed up of being ill- nap time on the floor 😁

So what now? All sunshine and roses ahead? Unfortunately, no one can say. He has got through the chemo and engraftment, so far, is going well. But the next 5 or 6 weeks will be telling as to whether or not the engraftment is going to cause problems. Our main worry is the return of Graft Versus Host Disease. Having battled GVHD for nearly 4 years I kind of consider it to be part of transplant. The fact that is may not happen has not registered with me. But i am scared of it returning. The treatments for GVHD take there toll on Seth, as well as the GVHD.

So the next weeks consist of watching and waiting day by day. Watching Seth looking for any sign of GVHD which could be problems breathing (GVHD of the lungs), acute diarrhea (GVHD in the stomach) and his skin flashing red initially (skin GVHD).

The risk of infection remains, Seth has a new immune system that is not at the same level as a fully functioning immune system. But at least he has a bit now which will help him and the doctors have a better chance of managing infection.

The next positive stage – being dropped from RED isolation to PURPLE and being allowed to go out for an hour or so each day – a big step for us. A big scary step. Mixed emotions at the moment as I am scared to hope because I don’t want to get complacent and then be totally floored by hiccups or problems. However, 4 months ago I was telling myself I would probably end this year as a mother of 1. Now, I might, just might, end it as a mother of 2.