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+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+42

The past 10 days have flown … and i am pleased to say its because we have been having a great time!! The Graft Versus Host Disease, so far, is responding to high dose steroid treatment and the rash has gone. It comes back  a little bit now and then but applying steroid cream seems to calm it down. The treatment started at 2mg per kilo (seth’s weight) of Methalpred. He is now on 1.5mg per kilo which will be reviewed again in the consultant meeting on Tuesday. HHV6 Seth has been on treatment for Human Herpes Virus 6, which is a drug called Foscarnate. He tested positive for this and the level was 10 to the 5 in his blood. A week later he is now 10 to the 3. So it is improving. Another positive thing is that he has had no temperatures and he has not been symptomatic with it. Immunology The doctors are happy with his immune system so far. He still needs to be kept away from busy places and children. But we are able to take him to the park everyday and he went to the local museum during the week. Which he loved as there were Dinosaurs and fish like Nemo.

a hour at the museum

holding on to daddy

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+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.