Today – T-4

T-4…really?! Already…. it feels like i have been waiting for this for years. When actually we have only been back in hospital since 26th Jan, although wow that’s 3 months already!!

So this morning arrived and Seth had again not spiked a temperature over night, another surprise! He received a Paw Patrol Jigsaw in the post from someone today which he thinks is brilliant. So he sat with the play specialist and did that whilst I took Nik for his GCSF injection.

Bloods today (the first number in bold is from today and the second number is from yesterday).

CRP- 90/295 – this is the infection marker for the blood. It generally works about 12-24 hours behind physical presentation (such as temperatures etc). The higher this number the more evidence of infection.

ALT – 369/224 – This is liver function so the lower the number the better.

HB – 86/88 – Seth struggles to maintain his red blood cells, he has recently been dropping 20 points per day, so a drop of 2 is excellent.

Platelets 92/73 – this is a normal drop for Seth, so hopefully this will improve now the old graft is gone.

Nik is starting to feel a bit sore and achy with the injections already. It is like flu symptoms with an ache in your bones. Its nothing incredibly debilitating but is there and does have an impact. As such were changing things round a bit this week and Nik is staying at the hospital more, whereas normally he would walk back to the flat (to get some form of exercise!) in the late afternoon with Hugo to spend time playing and getting him ready for bed. During the day Nik has to work so spends time in Seth’s room looking after Seth and doing that.

Daddy having his GCSF injection to boost his bone marrow.

Daddy having his GCSF injection to boost his bone marrow.

So we spend a lot of time swapping and taking turns with each child. This means ALOT of hand washing! Which results in BMT parent arms……. O my goodness my arms feel like i have dragged them along a cheese grater and then dipped them in vinegar! The brush that you have to use to scrub each time you go off the ward is amazing – it is potentially preventing me from giving Seth an infection that could risk his life. But dear god I think i will be wandering around with skinless arms soon….but they will be the cleanest arms in all the land!

The scrubber!

The scrubber! It looks like a plastic sponge scrubbing brush. However, I am pretty sure it’s actually rows of teeny tiny swords.

BMT parent arms

BMT parent arms

BMT parent arms

BMT parent arms

Yesterday was the last dose of Treosulfan, so today he just had Fludarabine (chemo wise) and continues with he rest of the protective medication.

As the day went on Seth continued to be happy and engaged. He stayed in bed all day though and complained that he was cold. This child is NEVER cold, unless he is about to spike a temperature….. so his Nurse (who knows him very well ) and I were constantly taking his temperature and it was consistently around 36.5 – so totally acceptable and normal. I did his lunch time bath and afterwards he was shaking saying he was freezing. I dressed him and put him in bed with 3 blankets on top and he was still complaining he was cold. Something is brewing I am sure of it. But at the moment we have to wait and see what it is. He had a nap late on this afternoon and woke with a slight temperature (38.1) and did a small vomit,  but is so happy in himself and decided that Daddy needed more stickers pulling off his arms. He’s not eaten anything today but has drunk a lot of water which is an improvement.

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So as far as I am concerned something is brewing…….so we continue to take it day by day

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: T-6

So another 24 hours have gone by and man have they been busy! I feel like time is flying, which may not be a bad thing as I just want to get through this now.

So today is Saturday, 6 days before transplant and day 2 of chemo. Seth had another busy night with 3 or 4 vomits and a pretty constant temperature of 39+, this continued today and his top recorded temperature at 5pm was 40.

His bloods today are reflecting his presentation. The infection marker in his blood (CRP) has increased to over 300, but although his liver function has gone up it is around 370 where as last week it was over 600 so hopefully that will stay down (absolute best would be for it to come down further)

In himself Seth is ok, when I arrived to take over from Nik this morning he was in a good mood and asked to play on the floor, however, within a few minutes he just wanted to sit and watch me play (and give me instructions on how to do it right!). I gave him his second bath of the day at lunch time and after that he was saying he was cold and was shaking quite a lot despite being dressed and wrapped in a blanket. At the time his temperature was reasonable at 37-38, but we know that he gets cold before he spikes and 30 minutes later his temperature was 39.6. He had already been given the maximum dose of paracetamol for that 24 hour period so once again he had an alternative drug, but this time it did not really perk him up or help him sleep.

The doctor this morning was concerned he could hear something on Seth’s chest, but an X-ray showed no changes from the last x-ray he had a few weeks ago. However, x-rays work behind what is actually happening so we still need to monitor it.

Seth is also complaining that his Mic-Key Button is hurting. We noticed yesterday it was looking a little yellow round the edges, and today it seems to be oozing a little so we have asked the staff to clean it regularly and a swab has been taken to see if there is an infection.

This afternoon Nik and I swapped again for a couple of hours. It sometimes feels like you are living two separate lives. On the one hand you spend your day caring for Seth and living in a medical environment, and then you’re playing with a happy developing healthy 6 month old who has no clue about what is going on around him. We try to take Hugo out and about as much as we can as it is not fair for him to spend all his time in the hospital. So this afternoon as his swimming lesson. Doing this with Hugo is bitter-sweet really. You feel bad for doing things like this when Seth is in hospital. But you can’t be with Seth all the time because his dad needs to spend time with him to. Also Hugo is now 6 months old, Seth was in intensive care at 6 months old. It is so different being with a baby who has not got health problems at this age. I only realised this recently when I was digging out 6-9 months clothes for Hugo. I couldn’t understand why we had only kept Seth’s sleep suits, then i realised, Seth did not need clothes at this age.

I digress anyway! Seth started his second day of chemo which meant that in addition to the Treosulfan he began his second chemo drug Fludarabine. Yesterday was the last day of the buffy coat (temporary neutrophils) so he is now without any protection and the Human Herpes Virus 6 has its best opportunity to thrive. He is on 2 anti viral medications in a bid to control the virus and we just have to wait and see if that is going to work.

This evening I again swapped with Nik and Seth was still the same, pretty lethargic but chatting and having high temperatures. I gave him his bed time bath and did all his cares, after her perked up all of a sudden and started chatting and wanting to sit up. He was making jokes about Ice Age being on the television and it being magic because I had not put the DVD in. Then it was my turn to come back out and take Hugo to put him to bed. Its hard leaving when he had just perked up but at least he was feeling better, and I have just spoken to him on FaceTime where he was beating Daddy up and his temperature is now down to 37 for the first time today. At least he is having a break!!!!!

So we continue to take it day by day

I would also like to take a moment to mention the nursing staff on the ward. At the moment they are short of staff, but not one of Seth medicines was late and we were never left with a machine beeping for ages before someone came to resolve it. I have noticed how well this ward works and how happy the staff are, which works as they help each other out and work together as a team. Despite them being under so much pressure working in an environment with not enough staff and incredibly vulnerable patients they are continually positive and Seth loves them all which helps him.

On 1st May (transplant day) Seth’s family and I will be once again wearing yellow for our little hero. A number of people have already said they are going to wear yellow, if you would like to join us then we would love to see, but we did not want to formally ask again as people have already given so much support to us. THANK YOU.

End of the day Selfie with Marshall and Rubble

End of the day Selfie with Marshall and Rubble

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

Today: That boy just gets more amazing…..

So my last post detailed my concerns about the return of some of Seth’s immune system (t cells). We have now spoken with Seth’s consultant who agrees with us – this graft is unstable. It is going to be better for Seth to get rid of it and start again. Even though it is dangerous the years of steroids and problems with this graft are taking its toll on his body. So its time for that graft to get out!!!

This week the plan was to remove Seth’s gallbladder because of a large gallstone that has been causing problems. This happened on Tuesday and whilst he was under he had his PEG changed to a button. The PEG is a tube going from the inside of his stomach, through the stomach wall and out of his belly that milk and medicine can be put down. Seth has a very poor appetite so we need this to help him put weight on. The button changes the tube into a shorter tube that stops at his skin. It is more hygienic and doesn’t dangle down so won’t get caught on things.

The gallbladder removal went well and they were able to do it via keyhole surgery. Afterwards he was in a lot of pain (which is always difficult to judge with Seth as he doesn’t complain, but when he tried to move he cried so we know it hurts a lot) as such he had morphine to help him manage the pain and get some sleep. The day after his surgery we were surprised at how Ok he was. He was his normal self, sore and needed a morphine bolus when we carried him to the toilet, but he was sat up in bed playing paw patrol and fireman sam. The day after however, he was very sore and did not want to sit up or move at all, he slept a lot and they had to increase his morphine. By the Friday, however, he had perked up again. He had a wound at the bottom of his belly (similar place to a c section scar) which started oozing. This made Nik and I worry as our first thought was INFECTION. However, the surgeon came to see him and was very pleased with the wound. Leaking is expected apparently because it is a high pressure wound and as long as it is dressed properly and kept clean it is fine.

Seth has now been moved into the room he will be transplanted in this room his smaller than his previous rooms (no reason – just how it is) and it has a blue line on the floor. Inside the blue line is the “clean” area. Above Seth’s bed is an air system. It pushes air down onto Seth’s bed. Vents in the corner of the room suck air out. So the air inside the line is filtered and clean. Outside the line is where the dirty air is pushed to.  So this means that he can have visitors – as long as they are well and do not enter the area within the line.

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The blue line that keeps Seth safe, and the rules of RED isolation.

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As a result of the move we are now in RED management and will be so until he has neutrophils post transplant (approximately 10 days to 3 weeks after transplant we should see him having neutrophils). At that point he will go down to PURPLE management and be allowed out (wearing a mask).

This week two other families on the ward have children that have now got neutrophils after transplant. This is brilliant You spend a lot of time on the ward and although you never meet the children, you feel like you know them. You spend a lot of time with their parents and asking after their welfare. It is brilliant to see things going well. But at the same time you have a pang of sadness wishing to be in their position. So much could happen in between now and then, we may never get there.

I had a brief conversation with Seth’s consultant on Sunday and he is very happy with Seth’s progress so far. A CT scan last week showed the infection we were worried about has gone – so what the doctors are doing so far is working. Ideally they would like to transplant tomorrow – as soon as possible. But it is not safe to do so whilst he is still healing from the operation. Chemotherapy could cause the wounds to re-open, which could be devastating. So it is a fine balance rather than best case. Were hoping he will heal well and we will be able to start chemo in 3 weeks. But that is entirely dependent on Seth’s recovery. We have had so many twists and turns over the years we take everything day by day. Never look to tomorrow – things could be entirely different and that leads to disappointment.

When it is time to transplant Nik and I have to give consent, at which time we will be told in the ins and outs of chemotherapy and the risks. We know that these will be scary. But we have no choice. We do this or we definitely lose our boy. This gives him a chance. We know that Seth has extensive damage to his lungs from the lung infection i spoke about here. Chemotherapy may cause issues here, this may be a problem, he may struggle and need assistance to breathe. We have to be ready for that. We hope it doesn’t, but we have to be prepared.

On a lighter note during this conversation we spoke about Graft Versus Host Disease, which we have been battling for 4 and a half years and lead to where we are today. Research indicates that a T cell depleted transplant carries a low risk of Graft Versus Host Disease. Seth’s chances are higher because he has had it before, but even so they are still very low.

My mum and step-dad came to visit this weekend, they spent time with Seth (only my mum was allowed to touch him as she is the 4th carer. My step-dad was allowed in the room but had to sit in the dirty area and was not allowed to touch anything.). They also took Hugo for a while so that Nik and I could be in Seth’s room at the same time – which was weird AND BRILLIANT! I really can’t wait for the day that Hugo can be there too.

New bedding sent to him. He LOVES it!!!

New bedding sent to him. He LOVES it!!!

Doing school work - learning to write

Doing school work – learning to write

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Crafts! (he thinks it is fantastic that he is now allowed to use scissors)

Easter Eggs! All donated to the ward by kind people....Seth does not like chocolate though so........

Easter Eggs! All donated to the ward by kind people….Seth does not like chocolate though so……..

Playing with Paw Patrol pups and showing off his new hair cut!

Playing with Paw Patrol pups and showing off his new hair cut!

the certificates he is given when he has to have something done that isn't nice, or he does something that we want him to do like eat.

the certificates he is given when he has to have something done that isn’t nice, or he does something that we want him to do like eat.

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot - but thats the most he has eaten in weeks!)

We have started a timetable (awful pic because i decided to put it on the window). This really works for Seth, he loves it and at snack time he actually ate (it was one carrot – but thats the most he has eaten in weeks!)

After the overwhelming success of #wearyellowforseth we have started to decorate his room….

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So that is where we are – no we wait and take each day as it comes. We wait.

Today: The process has begun….

Before I really start talking about Seth’s progress I wanted to thank everyone for their kind words and support and for sharing Seth’s video. It means a lot to Seth’s dad and I. I have had a few questions about donations and the wear yellow day. I will continue to respond to all of your questions as quickly as i can,  but I thought it would be helpful to post some links here for easy reference.

First of all i would like to highlight that our aim with #wearyellowforseth is to raise awareness and show Seth he is not alone in this.

Links I have been asked to share:

http://www.bubblefoundation.org.uk.

http://gofundme.com/SupportSeth

I have also had a number of friend requests. Unfortunately I am not in a position to add them as my Facebook is my personal page. If you would like to add yourself to this event:https://www.facebook.com/pages/Wearyellowforseth/946709205361894?skip_nax_wizard=true&ref_type=pages_feed. Updates will be posted here and you can also share you yellow pics on here too!

Now to the boy in question!

This week we have been told that Nik, Seth’s dad, will be the donor. We are both an equal match. However, I carry a virus called CMV (most healthy people don’t even know they have had it or may suffer a sore throat). Which stays in your system after you’ve had it like chicken pox. About 80% of the population is assumed to carry it, but for someone like Seth it can be quite dangerous.

ATG started this week and as it will wipe the T cells and put him more at risk.

 We were allowed to take him into the interview room on the ward to be able to have a family photo. We did not have a picture of all 4 of us (other than one taken at halloween where we were all zombies covered in face paint!) and I felt like I needed to get one incase we don’t get the chance again. Some people may consider this to be pessimistic. But I consider it to be realistic. Seth is not guaranteed to get through the next 4 months. A bone marrow transplant is a dangerous risky procedure when you don’t have all the complications Seth has. Seth’s consultant has been very careful to remind us of this. So i just wanted to make sure it was done!

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not the most fabulous family photo…..but we have one!!!

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and a cheeky cuddle with his brother

I came home on mothers day as I have to have a root canal (o joy to the WORLD!) so we’d planned to do it on the Saturday. Unfortunately, it seems i have been a bit tired and run down as Saturday morning i develop a cold sore. This means I can’t have direct contact with Seth. I was allowed into the entrance part of his room to see him through the window. But he was sat crying. So i went to get nik. The doctors saw we were a bit upset so allowed me to go in and see him if i wore a face mask and was only in there briefly. So he got to give me the things he’d been making with the play specialist and have a quick cuddle.

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This last week,  Seth has remained well in himself. However, he doesn’t like things to run entirely smooth! So he started the ATG drug on Monday of this week, which kills all off the T cells which have been causing all the problems and killing his immune system (making him have less immunity than he did before the initial transplant). When having this drug it is common for people to have a response, usually a temperature spike so it is given with Piriton and hydrocortisone cover. Seth managed it fine though with no temperatures! He did has a slight temperature increase on the Thursday evening but it came back down on its own within half an hour. However, on two occasions I went to pick him up and he had a wet right armpit…just one which i found strange. The first time i had picked him up and took him of the toilet so i thought i must have had a wet hand from washing them. The second time there was no water in sight and i realised his Apheresis line must be leaking medicine.

The Apheresis line, where it is placed and how it works.

The Apheresis line, where it is placed and how it works.

This is a problem for two reasons. 1. If it has a hole or has been displaced by being pulled then it is a site where infection can get into his body. 2. It is needed for the antibiotics Seth needs to help keep him well and protect him from infection, the blood he needs as he cannot maintain his red blood cells or platelets and so they can give him neutrophils. Because they could not risk infection they had to stop losing the line immediately and do an x ray using dye through the line. This could not be done straight away. So a cannula had to be fitted. Seth hates this. They use numbing cream on the skin, but his veins are weak from years of having to have them so it always takes a few attempts to get them in. He cries so much, but never moves. He’s really so good with it. Once fitted he will not use the limb it is in. This time it was the foot (after 3 attempts in other places), so he would not walk with it in.

So far the ATG has done what it should and he has no lymphocytes (T cells or B cells). There is a chance that his own neutrophils may come back, but this would be a surprise and so far (4 days after ATG has finished he still has none. So at present he had no immunity of his own at all and is entirely reliant on the buffy coat (neutrophils given by infusion that die quickly) and the anti biotic/anti fungal/anti viral medication he is on.

All the medication that Seth is on takes it toll on his body and he now has very loose diahorrea (sorry if you’re eating!). He manages it well, getting to the toilet and he doesn’t appear to get any stomach cramps so that’s good!

Seth has been on Prednisolone IV or Oral since his original transplant in Nov 2010. (see previous blog entry here).

Seth’s getting a little bored in his room and is become more and more like a coiled spring waiting to pounce….I’m not sure how he will cope with another 3 or 4 months in here!!!

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This is the entrance to Seth’s room. Before anyone enters we have to scrub our hands and wear a gown plastic apron.

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School and Seth’s art work on the wall

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He’s asked to go home a couple of times this week, but accepts it when he’s told he can’t. He already knows but I think just likes to mention it every so often.  This week however he has discovered Teenage Mutant Ninja Turtles….so we get a break from Toy Story 3 and Paw Patrol!!!!

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 #wearyellowforseth announcement. Please share!

Ok, so many of you have been asking about #wearyellowforseth and when it will be. #wearyellowforseth is something we’d like to do to be able to show Seth all the people in the world that are thinking about him. We have a map of the world in his room and will pin all the countries where people have posted a picture from. Also we will be printing some off and putting them up in his room. Whenever he is struggling (which is rare to be fair) we can show him your pictures.

Seth wanted to ask himself: https://youtu.be/4tlTZSGhi-g

 What are we asking? On 27th March 2015 we’d love for everyone of you to post a picture of you wearing something yellow to facebook, twitter or instagram with #wearyellowforseth. It doesnt have to be a yellow top, anything is acceptable. In fact BE inventive. Make him laugh!

This blog has taken off more than we imagined. As a result the Bubble Foundation is receiving support from two fantastic events.

The first is Supportin Seth. A local event being held at the local Conservatve Club arranged by a friend of our family, Jade Ruthven. Here is a link to the event: https://www.facebook.com/events/441781025970187/

The second being ran by Right Medicine Pharmacy, a chain of pharmacies based mainly in central Scotland. They are going to be sharing this blog to their staff members and encouraging them to wear something yellow on 27th March. There will be the opportunity for patients to also donate and staff will help engage them in Seth’s story and the Bubble Foundation. The proceeds will go to the Bubble Foundation.