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!



  

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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+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+3

It has been a few days since my last update. Apologies, but the stress of getting Seth to transplant I think took its toll and I have been pretty exhausted since the magic went in!!!

How’s Seth?

Well he is ok, he is doing better than  had expected so I am struggling to stay realistic. We still have potentially very rough times ahead. Nothing has changed in terms of risks and expectations, but he is not critically ill which is what I had prepared myself for. I keep having to remind myself that it can still happen. Seth still has no working immune system. The cells are in, but they are not home and not working yet.

 Also his Kidneys are an ongoing concern. At the moment the Creatine (used to monitor kidney function) in his blood is at the highest level of OK for his size. So it is a worry. Doctors have reviewed his medication to make sure they are only giving him drugs that are absolutely necessary. But inevitably they are all going to risk his kidneys to some extent. The positive thing today is that the kidneys have not got any worse and although it is not common for a BMT patient it is not unusual, so it is something we have to watch.

Since T+2 Seth has been having temperature spikes regularly and his CRP (inflammation/infection marker in the blood) is high at 450 (less than 5 is normal). We re not sure what is causing the temperatures at the moment.

In himself Seth is ok. On Saturday (T+1) he was in pain and discomfort but the morphine was helping, and he started to sleep a lot more. At the moment he is sleeping most of the day only having approximately 2 hours of awake time per day in half hour stints. He is getting tired quite easily. When he is awake, however, he is content. He has played and did some drawings today and yesterday.

His skin has an almost tanned look to it at the moment, which is a side effect of the chemo drug Treosulfan. His hands are very swollen and raw so we have a dressing on that won’t stick and bandages.

Seth is still positive fluid wise and the doctors are trying to manage it as best they can by monitoring his input and using diuretics to help him flush the fluid from his system. At the moment his genitalia are quite swollen and doctors think that this is because he is retaining fluid. But he is quite sore and uncomfortable with it.

At night he is continuing to struggle to maintain an acceptable oxygen level. So today we are spending sometime getting him used to oxygen prongs on his face, this will enable them to monitor how much oxygen he needs.

Another side effect of chemotherapy is Mucositis. Seth has bleeding on the roof of the mouth and the inside of his top lip from ulcers caused by the chemo.  We are trying to manage this with god oral hygiene – brushing his teeth, cleaning his mouth with a sponge soaked in mouthwash type medicine, and a bonjella type medicine 4 times per day.

we have bandaged hands because they are raw, prongs for oxygen and sore slin in general from the chemo . get better soon baby

  

 We still need to take it day by day. We do not know what is causing these temperatures, and we do not know how his kidney’s are going to cope with the ongoing medication. We also do not know how Seth’s body ill react to the stem cells, or how the new cells will react to Seth, also we do not know how Seth’s body will continue to respond to the chemotherapy. So at the moment there are a lot of unknown answers. But now everyday that passes we are one day closer to the next step – neutrophils. Hopefully we will start to see those come in at around day 10.

Seth says that Daddy’s magic is still finding its home, so he will feel better soon.

Today: T-1

The day before transplant and Nik’s has been to the Freeman Hospital to have his bone marrow cells harvested. This meant that Nik was hooked up to a machine for about 3 hours. The machine took out his blood, then separated out what it needed, and put the blood and unwanted parts back into Nik. Wowzers!!! It’s come along way from poking a needle through the bone! Doing it this way actually results in more cells being harvested. As soon as Nik came off the machine he felt much better, the pain and flu-like symptoms of the last 5 days have gone now he is not carrying increased bone marrow cells. Nik’s main complaint was that he could not eat the chocolate biscuits I had sent him with because it occluded the machine…… such a shame!

Nik Strapped to the machine

Nik Strapped to the machine

The machine

The machine

ready to transport to the lab for manipulation

ready to transport to the lab for manipulation

Looking good Nicholas.... ;P

Looking good Nicholas…. ;P

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Seth has had no vomits today and so far no temperatures. The doctors are concerned about the effect of the drugs he is having on his kidneys and liver, and concerned about fluid retention. So he had an ultrasound which, thankfully, showed no changes, fluid or infection. Seth is feeling unwell and so got upset when he had to have the ultrasound. He was crying, but when she went over his lower abdomen he started saying “ouch that hurts”. She said that every looked fine, so we think his skin is even more sensitive where he had his gallbladder out due to the scar and the chemo. As he was having the ultra sound all of a sudden i thought, they are going to tell me he is in kidney failure, I need to prepare myself for this. It is a total defence mechanism, because i guess at the moment, they might say that to me one day. But thankfully…..not today.

Today he has been in pain in his shoulder and left side and this seems to have been causing him breathing difficulties and a high heart rate. He has been asleep most of the day exhausted. He did not want to talk to anyone or be bothered, which when you are in pain and have been feeling rubbish for a few days I think is fair enough! He was dealing with it more admirably than I would anyway!

As such he is now being given morphine, and can have bolus’ if needed. Within half an hour of having this Seth perked up clearly happier now the pain is being managed. He stood up shortly after the morphine kicked in and shook his arm about declaring “Look Mummy! My shoulder is better!”. Nothing like a bit of pain relief to make things easier! After that he spent time playing with his fire engines and paw patrol toys and did some colouring. He got tired quickly but again I think that is acceptable considering the circumstances!!!

No matter what happens Seth continues to humble me with his strength and positive attitude. He has rough times, as I am sure he feels pretty pants. But the moment he feels a bit better he grabs it with both hands and makes the most of it. I could not feel more privileged than being able to say I am Seth’s mummy.

Seth asked about Daddy a few times today, he understood that Daddy was going to have the magic removed so that Seth could have it tomorrow and told me that before he could have it the Nurses needed to clean it. That is a close enough understanding for me! We had a conversation about Daddy’s magic needing to find a home inside Seth so it might not make him better straight away, and that the medicine that has been making him feel poorly this week might make him feel more poorly over the next week. I am not sure how much he understood that but he mentioned later that he won’t get better straight away. So hopefully he understands enough.

So as the day comes to and end, Seth’s pain is managed and he is happier. its transplant tomorrow. Lets just get it in…. we still have a long way to go and its day by day which has been proven this week where we have had something different to deal with every day. But for now, its OK.