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 ūüôą

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

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+8

So a few more days have passed and I don’t know if I am saying things are better or worse. It’s such a confusing time at the moment. Somethings are looking better, but then again he seems to be struggling in other ways.

His hair has started to fall out. We’ve talked to him about that and he really doesn’t care. Which to be honest neither do we. Obviously you don’t want your child’s hair to fall out. But we know why it is and it is the least of our worries. It will grow back!!

Seth’s skin is a bit better, a Treosulfan rash is like REALLY BAD sunburn, the skin swells, goes bright red and is hot to touch and incredibly sore, then as it gets better it starts peeling. Ignoring his hands of the moment we appear to have gone through the worst of it and although his legs are stills red and swollen, they are starting to peel and are looking a lot better than they were.

However his hands are still agonizingly painful. He is able to rest when they are bandaged up. However, the minute we take off the bandage to change it the air hits them and he screams in pain. I have started giving him bolus’ of Fentanyl every 20 minutes for an hour before we change his dressing, but it does not seem to help him when the air hits his hands. The sores appear to have got bigger, but they are dry and not weeping. It is the chemo attacking his already damaged hands and unfortunately we have to wait for the effects to go away. We just have to try to keep him as comfortable as possible and infection free until then.

His mouth and tongue are covered in ulcers, but they are bleeding a lot less and 4 times a day mouth cares appears to be enough to keep his mouth clean and free of mucus build up.

As his skin and mouth appear to be getting better, his breathing has slowly been getting worse. His oxygen requirement has been increasing and he is clearly working harder to breathe. Chest X-rays have shown some changes, but only very slight. However, this was enough for him to be suitable for SCARF research being conducted here and at Great Ormond Street Hospital. It is fairly common for children with immune problems to develop breathing difficulties. Sometimes these get so severe that the child needs assistance via intrusive ventilation. There has been some research recently that has evidenced that non intrusive early intervention reduces the likelihood of the patient going on to need intrusive breathing support later on (i think about 60% of the time). The non intrusive ventilation is via CPAP (Continuous Positive Airway Pressure). We were asked if we wanted to take part in the study, which we thought about and decided to go ahead as the CPAP will give Seth rest to be able to recover and not have to put as much effort into every breath. Once our consent Seth’s name was put into a computer which chose whether he would be part of the control or test group. Seth was in the test group. This means that he has been transferred to the¬†Paediatric¬†Intensive Care Unit and for 12 hours a day is on CPAP ventilation. It’s a four-day trial so as long as during that time he does not get to the point where he needs intensive care he will return to his normal room.

Infection wise we still do not know what is causing the high inflammation markers or the high temperatures. However, the marked in his blood have been going down for the last couple of days – fingers crossed they keep going!

In himself Seth is coming back slowly. Yesterday he insisted he was playing Paw Patrol and that he was getting down off his bed to do so. He managed to make it down there and get all the pups in the lookout, however, then was tired and I suggested he got back in bed. It is heart breaking watching him desperate to just play and it be such a struggle for him.

Still no sign of the new cells, but that’s not expected just yet. We could see them anytime from today onwards so – BLOOD RESULT WATCHING is on!!!!

The past two days have been better – starting to go in the right direction. But things could change back very quickly, and might do so when the new cells really start to engraft. We just have to wait and see and take it day by day.

having a nap during time off the CPAP. this is just a normal mask with hudrated oxygen going through it.

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-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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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.

Today: T-5

Another day closer and this morning I had a 7.15am FaceTime chat with Seth who was bright as a button and wanted to complain that Daddy was trying to get him to go back to sleep by saying it was not morning! Unfortunately Daddy slipped up when he said Good Morning to the cleaner – Seth does not miss a trick!! Seth was also very excited to tell me that he had not had one temperature over night. He had needed Oxygen throughout the night, but other than that his presentation was great!

Bloods today also showed some improvement, better liver function and the infection marker in his blood was the same – so atlas it had not gone up!

Today Seth has been up and about playing, making fire engines out of lego, and at one point Adventure Bay (Paw Patrol) and Pontypandy (Fireman Sam) came together to stop Teenage Mutant Turtle Raphael kidnapping Dilys (off Fireman Sam).  O the drama!

Paw Patrol and Fireman Sam save the day!

Paw Patrol and Fireman Sam save the day!

Concentrating on the lego fire engine!

Concentrating on the lego fire engine!

AND this afternoon he declared “I am hungry” and ordered a bowl of macaroni cheese. We thought he would have one piece and leave the rest as he would normally. Nik said to him that for every piece of pasta he ate he could pull a sticker of his arm (Seth finds this very amusing!) – half an hour later he had finished the bowl!!!

All finished! Get those stickers Daddy!!!

All finished! Get those stickers Daddy!!!

  

So today Seth has been an entirely different child and back to his normal happy self. Who knows what will happen over the next 24 hours. But at least he has had a bit of a break from feeling rubbish today.

Pulling his pretend grumpy face because he has to have a bath!

Pulling his pretend grumpy face because he has to have a bath!

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik's dad took Hugo for a walk.

Pulling Faces with Mummy and Daddy. We both got to visit him for a short time whilst Nik’s dad took Hugo for a walk.

Transplant wise we are continuing with the protocol and today was day 3 of Treosulfan and day 2 of Fludarabine. Today Nik started GCSF injections to make his bone marrow produce more cells in preparation for harvesting on Thursday. Feedback from Nik was that it stung a little….. I am sure he will cope!

Now the chemo has started we are doing what we can to reduce the side effects, such as bathing him 3 times a day and making sure his skin and mouth are cleaned regularly. However, the chemo will cause sickness and hair loss among other things, which are likely to start about a week after chemo has finished. I am ok with the hair loss, it is part of the programme and it will grow back. But i will miss his eyelashes! They are amazing and i don’t know if they will grow back the same!!!

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Those eyelashes!!

Those eyelashes!!

Today: Fasten your seat belts…..

So since my last post Seth has had a bit of a hard time. He has contracted a virus called Hhv6 (Human Herpes Virus 6) this is part of the herpes family and is a virus that by the age of 2 years old 98% of the population carry it, and are most likely unaware. It is likely that Seth was a carrier of this virus and now that he has no immune system it has ‘flared up’. The worry is that it is a virus – which antibiotics cannot treat – will cause Seth to become incredibly ill and the medical staff will not be able to manage it. However, this virus is treatable. The medicine takes a bit of time to work, but they can treat it. It caused Seth to vomit and have loose stools. He was not holding down food and felt poorly, his temperature was consistently above 39 with paracetamol. ¬†Although the Doctors said his presentation was normal for this virus and that it is treatable, it still sparked worry in Nik and I. We are getting close to transplant, we need to keep him well.

Yesterday, Seth turned a corner and perked up for the first time in nearly a week. He was happy and playing and got down off his bed to play on the floor. But today he woke very tired and complaining of pain in his right side. His blood results had returned showing that his HB (red blood cells had dropped from 96 to 39 in 24 hours, and his potassium was very low. His presentation was consistent with these results but an X-ray was carried out just to rule out any other problems. Within half an hour of the blood being put up Seth had totally perked up and his pain had gone away. It’s amazing what a bit of blood can do!!!!

Then this afternoon we have had visits from 2 consultants. The ward consultant and Seth’s consultant with some important news…..

TRANSPLANT DATE HAS BEEN SET  FOR 1st MAY 2015.

Seth will have 7 or 8 days of chemotherapy finishing the day before transplant, and Nik will start the injections to activate his bone marrow 5 days before, with the bone marrow being harvested the day before. ( i will do a post about the transplant next week when we have managed to have a sit down and a long chat with the consultants).

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Having bubble blowing races with daddy (its for lung physiotherapy)

Having bubble blowing races with daddy (its for lung physiotherapy)

Practicing writing numbers

Practicing writing numbers

Get some rest baby

Get some rest baby