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.

Today: T+11

  

International Nurses Day today, and we as a family appreciate the nurses of the world.

We appreciate them spending 2 hours to change the dressing on Seth’s hands because it is too painful to rush.

We appreciate them taking the time to explain what they are doing and why.

We appreciate them taking the time to make sure we, the parents, are ok. (even though that is not their job).

We appreciate them dealing with traumatic events and then coming to our child and putting on a brave face.

We appreciate that if they are worried, or panicking, we don’t know about it.

We appreciate them making Seth laugh playing with him and building his trust so he is happy for them to do their work. Making this all that bit less stressful for him.

We appreciate them working constantly hard for their 12 hour shift to make sure Seth gets the drugs he needs. Seth is currently require 12 intravenous medicines per day. One of these is 24 hours a day, another 20 hours a day and quite a few are more than once a day. The shortest is half an hour but the rest are all an hour – and that is without a flush. All this with only 2 lines and a child that often needs little extras such at blood, platelets, magnesium, potassium and the like.

We appreciate them answering our seemingly never-ending questions;  going away and getting us an answer they’re unsure of, and not telling us what we want to hear because that would give us false hope.

We appreciate them taking a later break because Seth’s in pain

We appreciate them taking the time to learn about a child with complex health needs and adapt their practices to keep them safe.

So thanks to all the nurses in the world. You’re doing alright!

Today we returned to our bubble – as a BMT parent it is the place you feel most safe. But mainly it is nice that we were able to come back as planned. The trial Seth was on is a 4 day trial so was always planned to end today, however, if Seth had needed intensive care he would have stayed there. It’s always nice not to need it.

The numbers in his blood (liver, kidneys, inflammation etc) are all good. They are not perfect and won’t be for a long time, but for Seth on day 11, they’re not getting worse and that is a good thing.

The hair is gone now. It starts falling out slowly and then just falls out in clumps. When it began falling out more it was long and patchy so we asked the play specialist to come and shave it off…..Seth though she had taken all his hair and made him bald! Haha – until I reminded him that the medicine would do that and i got a sigh and “o yeah”. Today we showed him what his head now looks like and he says he quite likes it! Hopefully he will also be happy when it comes back!

His skin is starting to setting, it is quite flaky at the moment and his ankles, toes, heels, armpits and neck are still sore to touch but slowly getting a little less angry each day.

His hands are still so sore and the patches where the skin had become raw have now joined up. However, we had someone from Burns and Plastics come and see him yesterday and they have recommended a non stick dressing which has some silver in it that will help prevent infection. Unfortunately there is nothing more that we can do until the graft starts taking and he starts growing back the skin. In order to help him with the pain when we took the bandages off yesterday he was given some Ketamine and Midazalam. The really helped and he was not screaming in pain like he has been the last few times. But he had to have a bit extra Ketamine, which made me a bit sad because he must have been in complete agony the previous times for him to need so much medication to help him cope. Hopefully it will start healing soon. At the moment all we can do is try to keep it clean and infection free whilst managing his pain. Luckily when it is bandaged the pain is manageable with Fentanyl which runs 24 hourly.

Over the weekend we have been having Lymphocytes showing in his white cell count. This has been analysed and shows that Seth has 1500 T cells (Gamma Delta) in his blood. These could be the cells they gave from Nik as they only gave Gamma Delta cells. Also the Neutrophils have been coming in, but then going down again (0.03 then 0.01 then 0.3 today). Were waiting now with baited breath. Lymphocytes coming in before Neutrophils could be a sign that the previous graft has come back – therefore evidencing rejection of the new cells. Or they could be Nik’s cells floating around in the blood attempting to fix the things that are inflamed in Seth’s body. We just have to wait and see what happens and keep taking it day by day

Today: T+9

So since my post yesterday there have been a few changes…….

Seth was on the CPAP machine again for 12 hours over night as part of the SCARF research.

He had the most settled night he has had in a while, and today has been maintaining his oxygen level WITHOUT the need for additional oxygen! He has been breathing a lot easier and his chest sounds better. Hooray! Towards the end of the day he did start to breathe a bit harder and needed additional oxygen when asleep. But its an improvement.

His cheeky little character is also coming back a bit and we sat on the floor to play paw patrol again today, although he again tired very quickly. He is just so determined not to be sick!

His hands remain sore but we are now only going to change the dressing every other day, and they have doubled the amount of pain relief he gets when he has a bolus. So that should help him a little with the pain. In addition he has been referred back to the tissue viability team who will know how best to dress the hands and ensure he is getting pain relief.

Fluid wise Seth is still retaining fluids, his genitals are less swollen, but he is puffy on his face and legs, and his belly is very distended at the moment. The doctors are continuing to monitor this closely and treating it with diuretics when necessary as well as giving him the minimal amount of fluid.

Being on the intensive care ward is stressful for Nik and I, and is creating some frustration and conflicting feeling (it may be that we are crazy BMT parents scared at leaving our safe little bubble!). Seth is doing well with the CPAP support and it seems to be helping him to improve. But we also feel like we may be compromising his safety in terms of infection. The nursing staff on intensive care are not BMT nurses and so work differently and have a different understanding to isolation nursing. So having Seth on the ward is a learning curve for them, but he is still not receiving the protective care he would receive on his normal ward. The strict isolation rules seem to not apply as much here, but if he needs it he needs it right? This may be fine and not an issue, but 9 days post transplant Seth is as vulnerable as it gets and we are worried.

Tomorrow we are going to speak with the relevant people to confirm what is absolutely necessary to protect Seth so that we can ensure that is happening. It may be that we are more cautious than needs be and he is already getting the level of protective nursing that he requires. At the minute Nik and I are feeling more stressed than we have throughout this process so we need to clarify and understand and then consider our options. As removing him from the research and back to his ward may be detrimental to his breathing and could lead him to need to be in intensive care, which would not change anything anyway.

Now….about that magic…….

It looks like engraftment has begun, he has some lymphocyte numbers coming up in his blood. At the moment that means nothing as they need to check further to see what is going on. But hopefully it is the sign that the magic is home and beginning to settle. This is good – it what he needs, but it may cause him to go backwards again before he starts improving. The new cells might go to all the areas we have problems at the moment and cause further inflammation trying to fix things.

So today was a good day…..tomorrow who knows were still taking it day by day.

Today: T+5

So I would like to start with my opinion on chemotherapy…..It’s a BITCH (sorry mum).

I should probably expand on that statement a little. Chemo in our situation is a necessary evil, and it is EVIL. Looking back at Seth’s first transplant we made the decision we did because, well we were told that he would not survive chemotherapy. It got us this far. But the reality is that if Seth would have been well enough for chemotherapy in the first place, we may not be here now. So we are here and we have used chemotherapy this time to try to get a better graft and a cure. It’s necessary, absolutely and I do not regret the choices we have made.

But,

My baby boy is so unwell with it. His mouth is full of bleeding ulcers, he’s violently wrenching and vomiting bringing up bile as he cannot tolerate anything in his stomach other than 6ml an hour of Dioralyte (and he has to have 2 hour breaks every 4 hours).

They are also concerned that he has VOD (Veno-Occlusive Disease) another chemo side effect. It can be life threatening. However, Seth was on the treatment from the first day of transplant because of worries about his liver, so hopefully it will not develop into a severe form.

Then there is his skin. His poor skin. It looks like sunburn and apparently also feels like sunburn, so its painful, especially when he is touched. In parts the skin is a bit worse and sores have developed. His hands are the worst part, which we knew was likely to happen because of the previous damage to them as a result of the Graft Versus Host Disease. They are completely raw in places and oozing a bit. We have special none stick dressing on them and then they are bandages to stop him picking. But when we change the bandages just the air hitting them makes him cry in pain. We also have to soak them in warm water with antiseptic lotion in and he is so scared of putting his hands in I have to force them in the water. He just looks at me sobbing, it makes me feel so bad but we can not risk his hands getting any worse.

my baby’s poor hands

In addition to this he is still retaining fluid and it seems to be going to his genitals so they are very swollen, this in addition to the sore skin makes it a very tender area.

So we have all that going on with the chemo, and he is also still spiking temperatures and has a high CRP (inflammation marker in the blood) so the doctors are concerns about a fungal chest infection. He is also needing more and more oxygen each day to maintain an acceptable O2 level. This may be partially down to the chemo (which is likely to have gone to the already damaged area in his lungs), but also likely to be related to an infection. As a result his antibiotics have been changed and his oxygen requirement is being closely monitored.

He is now getting Buffy Coats again (neutrophils that go in, attack and then die) so hopefully this will help him deal with any infection alongside the antibiotics until the graft takes and he starts to get his own protection. Hopefully this will be the beginning of next week, but it may take longer. There is no way of telling we just have to wait and see the blood results each day waiting for the 0 to change to 0.01 or higher and then watch is hopefully keep climbing. As that number climbs we should see the side effects of the chemo start to reduce and we should start to get our little man back.

His Kidney’s continue to be a concern and are being very closely monitored. He has had an ultrasound today to check his liver, kidneys and stomach and although there are changes they are not significantly concerning at the moment, but they need to be closely monitored.

In himself he is tired, and lethargic, which is understandable considering everything that is going on. He is so good with everything that has to happen, dressing changes, creams, baths,all sorts of things keeping him awake and that are, currently, very painful. We keep saying how brave he is. But I don’t like saying it. I don’t want him to think he has to be brave, or do anything that we want just because we want him to. I want him to be pain-free and a normal 5-year-old. I want him to have a tantrum because he has to eat his greens or because he can’t watch his programme all day long, I want him to run around and have to be told off for running into his brother, I just want him to be able to go home.

So right now, we do what we can to make that happen. We bathe him, put his creams on, keep his hands clean, change his bedding, give him medicines, make sure any changes are discussed with the doctors and nurses and we just keep going. We make sure we are there so that when he wants to read a book, or play a game he can, and we keep taking it 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

IMG_0004_2

IMG_0009_2 IMG_0011_2 IMG_0013_2 IMG_0014_2 IMG_0015_2 IMG_0016_2

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.

Today: T-2

So as the last day of chemo dawns Seth is starting to struggle again. Over night he had a few vomits and one temperature of 38.4. When he woke this morning he was complaining of being cold and of having pain in his shoulder. He continued to  vomit, particularly after a drink of water or administration of oral medication.

The day continued and Seth continued to struggle. The pain in his shoulder appeared to be incredibly sore, he did not want us to touch it and lifting him was difficult as he did not want us to touch his shoulder. The doctors were concerned it may be an infection in his chest or inflammation in his diaphragm (apparently the nerves in the diaphragm can cause pain in the shoulder – who knew?!). Seth had an X-ray which showed no changes in his chest. But it seems that his fluid balance is significantly positive (meaning that he has had more fluids in that out). Normally for you and I this would not be a concern as our bodies would expel the extra fluid. However, Seth is having a lot of fluids put into his body (such as medicines) so his body may not keep up. As such he has been given a drug this evening that will cause him to expel some fluid. The hope is that it will make things easier on his chest and diaphragm.

Also during this particularly ill period in the early afternoon his feet were a horrible blue/grey colour, which was upsetting. Especially as he was crying because he felt so cold. Eventually he warmed up and his feet came back to a normal colour.

At 4pm he spiked a temperature of 38.8 and was given paracetamol which helped him fall asleep. Upon waking he was happier, warmer and more himself so he sat on my knee and watch some television. We then did some colouring in his bed, he had his bath and went to sleep. Although as he went to sleep he was again complaining that he was freezing cold.

Seth is also complaining that his skin is sore. The Treosulfan (chemo drug) is known to cause skin problems, which is why Seth has to have 3 baths per day and cream applied to his skin 3 times per day. This morning he was quite red and sore looking but his baths made it better and by the third bath it was much less red – this may not be related but he was soothed at least!

So at the minute Seth is really unwell and feeling rubbish. Were not really sure why, it could be side effects of chemo, or it could be something else. Only time will tell.

Keep taking it day by day

Just a short update today as I want to try and defy Hugo by getting some sleep!!! ;D

Today: T-3

Another day closer and still taking it day by day.

Seth woke happy this morning, but had a temperature of 38.6 at 6am and a small vomit. He was happy to be left with the play specialist, dressed as a superhero (standard…), whilst I took Nik for his GCSF injection and when I got into his room he was lying down watching cartoons on his IPAD. But when I had scrubbed and got into his room properly he got down off his bed and we had a game of basketball!! However, he quickly tired and we then watched a DVD and he fell asleep.

GOOOOD MORNING!

GOOOOD MORNING!

Readyyyy!

Readyyyy!

Shootin' hoops....

Shootin’ hoops….

Exactly the same as yesterday at about 1pm he started to complain that he was cold and asked for more and more blankets on him despite being fully dressed. Again we kept a close eye on his temperature and it was, once again, totally fine. He fell asleep and woke at 5.30pm and when i picked him up to put him on the toilet he complained that his skin was sore, so i ran his bath, bathed him and put his creams on. The whole time he was really upset complaining that he was freezing cold. But still no temperature, at 6.20pm he finally spiked a temperature of 38.3 and did one vomit. After the vomit he was totally back to his normal happy self! Sat up colouring in paw patrol characters!!!

His bloods today (the ones in bold  are todays, the other number is yesterdays).

HB –77/86 – Seth’s cut off is 80, so he had blood today which made him a bit red. Hopefully this will give him a bit more energy tomorrow. Again it looks (fingers crossed!) like the speed his red blood cells are dropping at is slowing down.

Platelets – 42/73 – These seem to continue to be dropping at about 20 points per day.

CRP – 76/90 – This is still improving, so more head scratching as to why he is having these temperatures.

ALT – 353/369 – Liver function has improved slightly.

Also today we found out that Seth is no longer testing positive for HHV6 virus. Which is great news as it gives him one less thing to battle. It may return as he will carry it (as you would the chicken pox virus or the cold sore virus) but for now it is dormant. So they are dropping one of the anti-viral that he was on to treat it and halving the other. So hopefully this will reduce the impact they may have been having on his liver and kidneys.

The worry for me is that two days in a row he has been fine in the morning, then been complaining that he is freezing cold in the afternoon until he finally vomits and spikes a temp. He is also continuing to need Oxygen when he is asleep at night (but weirdly not when he is asleep in the day).

BUT 3 days before transplant I am happier with Seth than I expected I would be. I am entirely happy with him? No, but I did think we would be having more problems with the HHV6 virus and I had prepared myself for things to be incredibly difficult this week. However, the effects of the chemo can take 7 to 10 days to come into full force, so we have that to come, alongside him receiving stem cells and us waiting to see how they react to his body. We have a difficult few weeks ahead, but like i say day by day, and today, we’re in a better place than i expected to be.

Tomorrow, well tomorrow we will see.