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The End of An Era

Never did I think a week ago that I’d be writing this today. Last Saturday we managed to get Oliver out of his cot for a play before he resumed sleeping. But not anymore as after 21 months of fighting Oliver decided enough was enough.

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Just a week ago

The last six months have been so hard seeing our beautiful boy become so poorly but bravely solider on. 
We have always been realistic about Oliver and over the past six months in particular have had to face the reality of losing him more than once. Seeing Oliver’s eyesight deteriorate was one of the hardest things and we were increasingly concerned about his quality of life and what impact all the procedures were having on him.
Last week we met with Jane Hartley, Oliver’s consultant, and she told us that she wasn’t sure Oliver’s bowel was going to recover and we were all in agreement that Oliver had been through too much and we wouldn’t put him through any more major procedures. We also raised concerns about Oliver increasingly zoning out and struggling to focus and so Oliver had two scans on his brain.

On Monday afternoon we met with Patrick McKiernan who was consultant for the week and he sadly told us that the scans showed Oliver’s brain was slowing right down and that nothing more could be done. Within less than a week we had gone from knowing we’d lose Oliver at some point to we were going to lose Oliver imminently. 

We had spent the best part of 16 months at Birmingham Children’s Hospital and Oliver always managed to win the hearts of everyone he met and this week has shown what a loved little boy he was. On Tuesday and Wednesday Oliver had a steady stream of visitors all day with everyone telling their stories of Oliver and how cheeky he was, especially at night when he’d want to play, and of course his little chuckle.

People are so quick to criticise the NHS but we cannot fault them for all they have done for Oliver.  This week has shown how amazing both the NHS and the people that make it are. The Palliative Care Team quickly got involved and they and the Pain Team ensured Oliver had the best possible care and that he was as comfortable as possible. The staff of Ward 8 have been absolutely incredible, providing as much tea as we could drink and the best support. It’s easy to think nurses become immune to seeing children so poorly and not make it, but seeing the nurses so upset will always be something we remember as we realised how much a part of Ward 8 Oliver had become.

On Wednesday the nurses arranged to have a full size bed put into Oliver’s room instead of his cot and this meant we could both lie with him and cuddle him until he left us in the early hours of Thursday morning.

On Thursday we visited Oliver where he looked so angelic in the new babygro we’d left out for him, tucked up with Gruffalo.  We then said our final goodbyes on the ward before packing up and heading home for the final time.

Today was a bittersweet day as Oliver’s Nanny completed her 100ft abseil down Fort Dunlop to raise money for Ward 8.  Oliver passing away made her even more determined and we are incredibly proud of her!  If you would like to donate please visit https://www.justgiving.com/veronicasoar/

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We’re not quite sure what we did before Oliver or what we do now but I know we’ll get through it as I have the best husband, daughter and in laws who came every week.  I’d like to say that we had the support of our friends and that we had lots of visitors,  but that wasn’t the case and this whole experience has shown who our true friends are.  However it has shown how strong we are and what an awesome threesome we are.

Sleep tight Ojlet
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Something’s Brewing

Hi guys

It’s been a boring couple of weeks really with not much to report.  The highlight has probably been moving into a bigger cubicle!  I was in the smallest cubicle before and just to get out and play Mummy and Daddy had to move my cot and pump stand so I could play on the floor…but now I have a big room with a nice big window!

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I went back to theatre again last Thursday to have the stitches taken out of my cornea transplant in my right eye and had some more amniotic membrane in my left eye and they’ve partially stitched my eye shut to protect it and hopefully that will help the bandage contact lens stay in.  The opthalmologists think I have the lost the sight in my right eye but they’re monitoring it closely to make sure the infection has gone.

I’m getting nowhere with my feed and my stoma losses are still high and randomly even higher some days.  I’ve had a few viruses too so am currently needing oxygen,  so even when I’m free from my PN,  I’m still confined to my room.

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Playing while I have my nebuliser

Ella was here most of last week because it was half term so it was nice to see her, when she wasn’t gallivanting round the ward that is.  Mummy and Daddy have swapped round this week so I’ve been with Daddy so far this week and Mummy will be coming to switch with Daddy tomorrow.  Daddy thinks I’m getting poorly as I’ve been really sleepy and my blood pressure is really high too so the doctors are keeping a close eye on me. Jane,  my consultant,  is on service this week so I’m in extra good hands!

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I love my Daddy!

As well as Nanny doing her abseil, my other Nanny Julie is going to do a skydive when she goes to Las Vegas in March.  She will be doing this to raise money for Ronald Mcdonald House as they are fantastic and Mummy, Daddy and Ella spend more time there than our proper home.  We are very lucky to have a Ronald Mcdonald House near the hospital as it means they can all stay near me.
You can sponsor Julie here www.justgiving.com/Julie-Goodwin3

Anyway, time for more sleepies

Oliver
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Getting Nowhere

Hi guys

Another couple of weeks have passed and I’m still here and there’s been no real changes. 

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I need a haircut!

My stoma output is still high which is restricting how much feed I can have.   Last weekend Mummy and Daddy had a scare as my stoma output had a lot of blood in and I also had blood out of my redundant bottom.  I had an endoscopy and ileoscopy on Monday which showed I have colitis,  which is inflammation of my original bowel so I’m having steroids.   Everyone was worried it was internal GVHD as my skin was going red at the same time,  but thankfully it’s not!
My skin had started flaring again but I had one day of ECP (my line was being naughty so I missed a day) and steroid cream and it’s now looking OK.

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The opthalmologists had been pleased that my eyes were stable but this weekend they’ve got more sore and so Mummy is going to have a chat with them.   I’m still having hourly eyedrops and with talk of me going home Mummy and Daddy need a plan as they can’t be getting up in the night to do my eyes and I’m getting pretty cheesed off with being faffed with all the time.  I’m the only child in the UK with eyes so bad from GVHD so the opthalmologists are speaking to the Sick Kids Hospital in Canada for advice!

I had a good start to the week but have been a bit grumpy for the past few days.  I also went to theatre again on Friday and now have a new broviac line for my PN. Mummy and Daddy have started PN training again so hopefully they’ll soon be flushing my line and putting my PN up so they’ll be ready to do it at home!  Today Mummy flushed my line and put my PN up for the first time.

Ella is also becoming a very good nurse! She’s been too busy playing with her friend Madiee to come and play with me, so I have to shout at her when she comes in the room. Her dolly now has an NG tube and a stoma bag!

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Ella and her brave friend Madiee

It was also Mummy’s birthday so Daddy and Claire the play worker helped me to make her a card and decorate my room for her.  Daddy tried to make sure Mummy had a good day even though we’re in hospital.  Mummy and Daddy don’t seem to have many friends left, because of me I think, but the ward got Mummy a card and present and that made her happy and Nanny and Grandad got Mummy a nice present and looked after Ella so Mummy and Daddy got to go for dinner. 

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That’s it for this week!

Love

Oliver
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Fighting Back

Hi guys

So after the drama of a cornea transplant I bounced back very quickly and was soon off oxygen.  Kevin one of the Ophthalmologists was really pleased with my eyes and was happy for me to go home for the weekend and then for Christmas too if they remained good….

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Doing clapping

On Saturday though my stoma output went crazy.   I usually have 250-300 mls out a day, on Saturday I had 1300 out so by Sunday I was very dehydrated.  Mummy,  Daddy and Ella arrived on Sunday morning expecting another good day but instead had to get the doctors to review me and I was quickly given some fluid boluses as my blood pressure was very low and I was struggling to breathe so needed oxygen.   It was a scary day for everybody and I nearly had to go back to PICU.

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Ella also got to meet Elsa!

I had lots of tests done and a stoma biopsy showed I have mild rejection so last night I had some super strength steroids to help.  Today I have either been angry or asleep!  It’s crazy that it’s rejection after I had GVHD which is the opposite type of rejection.  It must mean my body has decided to fight back…but maybe too much.

That’s us here for Christmas now.  Mummy bought the world’s smallest Christmas tree for their room at Ronald Mcdonald House and Ella put up some fairy lights. Mummy and Daddy have tried to make sure Ella has lots of fun too and on Saturday night they went out for a Chinese which Ella loved!

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Mummy and Ella enjoying dinner

I need to say thank you to Sainsbury’s and Nivea who have been very kind and donated some goodies for the ward and Ronald Mcdonald House.

I’ll try to behave now or Santa might not visit me.

Oliver
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Another Flare

Hi guys

Well, I had hoped I was home to stay but my GVHD seems to have other ideas. I started getting a bit of a cough and cold a couple of weeks ago and that seems to have caused my GVHD to flare again as about a week ago my face started getting red and it’s breaking down now.  I have a couple of new patches on my body too.

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My poor sore face

Daddy took me to Rotherham for ECP last week and Dr Alfred had been hoping to reduce my steroids,  but instead I’m now on 10mg everyday to try and get the GVHD to back off.  As a result I’ve only had one happy day which Mummy, Daddy and Ella loved….but since that I’ve been pretty miserable and sleeping lots.  My cough keeps waking me up at night though so Mummy and Daddy are getting very tired!  I’ve sicked quite a few NG tubes out too and decorated both Mummy and Daddy, oh and Ella too! I like to spread the love!

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Me and Dadda

My eyes are much the same but behind the scenes at Birmingham Children’s Hospital the opthalmologists are arranging for me to have some eye drops made from filtered blood which will hopefully help and I should get these soon. I’m going back to BCH on Friday too so the opthalmologist can have a look at my eyes when I’m asleep and he might block my tear ducts to help my eyes keep moisture.

Mummy and Daddy are watching me like a hawk and Mummy and Dr Hartley have been speaking and emailing lots about me.  I want to stay at home but if my skin gets worse I’ll have to go back and that might mean spending another Christmas in hospital and that’s not what me or my sister want.

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Me and my lovely sister

I need to go have a nap now.

Love

Oliver
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Out On Day Release

Hi everyone

The good news is I’m finally home!  Well I say home but I’m still in hospital alot! Last week I spent 4 days in hospital so I’m spending lots of time on the motorway which means lots of sleeping for me…not that I need am excuse to sleep!

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Playing with my sister

My eyes are still really sore and both my corneas are very scratched so I’m having 4 types of eye drops and ointments.  In the daytime my mean Mummy and Daddy have to prise my eyes open every 2 hours to put drops in but they do tell me it’s to help me.

My sore eyes mean I’m still very grumpy alot of the time. My favourite position is having cuddles so I can hide from the light.  Because my eyes are so sore I want to sleep lots but Mummy and Daddy are trying to keep me awake so I sleep properly at night.

I’m back in Rotherham two days a week for my ECP and Dr Taylor and Dr Alfred are pleased to see how well my skin looks as they’d seen the nasty photos from Birmingham from when I was really poorly. 

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Enjoying a cuddle up in Rotherham with Daddy

Mummy and Daddy took me to a special corneal clinic last week last week and the specialists had a couple of ideas of how to help my eyes so we’re just waiting to see what the plan is.

The main thing now is just staying free from infection as my immune system is still very very weak and I don’t want to be back in hospital again!

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That’s all for now anyway…its sleepy time!

Love

Oliver
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Back On Ward 8

Hi everyone

It’s been a while since I updated you, I’ve been too busy sleeping!

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Smily boy

I finally got off the ventilator and back on ward 8 about 3 weeks ago and quickly got off the oxygen.  I’m also on overnight feeds now and have two bolus feeds of a whopping 150ml in an hour.  I’m still having weekly ECP as the lovely ladies from Rotherham have been coming down to treay me.  Me and Mummy got to meet Sarah-Jane Marsh the CEO of the hospital and the Chief Medical Director the other week who knew all about me and now realise how important ECP is to me.

The downside is that my eyes are still really sore from the GVHD.  The opthalmologists have been keeping a close eye (pun intended) on me.  Last week my left eye was pretty much healed and my right eye was still damaged,  but yesterday I saw the opthalmologist again and my left eye has deteriorated again.  Mummy and Daddy now know why I’ve been so grumpy and sleepy for the last few days.
My eyes are so sensitive that I can barely open my eyes and so Mummy and Daddy have to sit in the dark and I have to wear sunglasses if I go out.  It’s great when I see the opthalmologist as they put some magic drops in my eyes and I can instantly open my eyes and see without it hurting and for a short time I’m happy Oliver again…they wear off too quick though :evil:.

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Enjoying some fresh air

Yes, you read that right,  I can go out now!  Most days I go back to Ronald Mcdonald House for a few hours in the afternoon…where I mostly sleep! I’ve been on a few walks too but because I have such a weak immune system I can’t go anywhere busy which means Mummy can’t go shopping (much to Daddy’s delight).

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Having my first cuddle in a very long time with my sister

On Sunday it was Daddy’s birthday and I was allowed out for most of the day so we all had a birthday lunch for Daddy at Ronald Mcdonald House with Nanny and Grandad and my silly big sister Ella. 

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My Daddy's birthday lunch

That’s about it for now, I’ve got to wait and hope my eyes get better and also get my blood pressure under control.  I want to be home for Christmas!

Lots of love

Oliver
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My Longest Stay In PICU

Hi everybody

I’m still in PICU, my longest stay…even after I had my transplant! 

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Managing a little play with my eyes closed

The good news is that my skin is healing up well after my last flare up.  I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells!  My eyes are much the same and the opthalmologists are checking my eyes regularly.

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Me a week ago

On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s!  Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there!  Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!

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I'm slowly getting rid of my bandages and I'm getting long legs like Daddy

The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections.  Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator.  Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!

In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!

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Me and Oleg!

That’s all for now, I’m going to carry on snoozing!

Lots of love

Oliver
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Back on PICU

Hi everyone

Oliver’s asked me to do this week’s blog as he’s feeling a bit poorly.

After last week’s visit to Rotherham for ECP Oliver seemed to be doing well and we managed to wean his oxygen down last weekend.  We even managed to enjoy a few cuddles and Oliver was able to sit up and play for short spells.

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Enjoying a nice cuddle

During Sunday Oliver’s skin got progressively redder as the day went on and he spiked a temperature.  Overnight his skin blistered on his face and neck with new rash appearing on his leg and we knew his GVHD was back.

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Oliver being cheeky and trying to get his sats probe

On Tuesday Oliver went to theatre for a dressing change and also to have a new hemo-cath line as his was playing up but struggled with his breathing when he got back to the ward so was quickly assessed by PICU and taken back to PICU and put on a ventilator so we decided to make sure we were all together so Paul and Ella came over after school and Ella had 2 days at “hospital school”.

At the same time we were told by Dr Hartley that as Oliver’s GVHD was flaring up again we only had one more option for treatment and that was campath. 
We had been told about campath before and were very reluctant to let Oliver have it as it has a lot of nasty side effects but our main concern was that it would wipe Oliver’s immune system completely leaving him without any defence against infection.  When campath had been mentioned before we had other options with steroids and mesenchymal stem cells but as these had not had any real effect we decided campath was our last option to try and so on Wednesday Oliver had his first dose of campath.   Thankfully he did not develop any side effects and we expect him to have a further dose or two next week and hopefully this will stop the GVHD attacking his body until he can resume ECP.

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Back on PICU again

Oliver went back to theatre again on Friday to have his dressings changed and was also seen by the opthalmologist who was concerned that his left eye was deteriorating because of GVHD so he is now having ointment in both eyes every hour to try and help.  Oliver’s skin is now very sore and raw in several places so he’s sedated to keep him comfortable and also to keep him from trying to pull his ventilator tube!  We had hoped to get Oliver extubated this weekend but he’s needed more breathing support and we’re hoping he doesn’t have a chest infection.

It’s certainly been an eventful week.  Here’s hoping things improve soon.

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4 Weeks At BCH

Hi everyone

Well, I’ve been here almost a month now and I have no idea when I might be able to go home.

My GVHD seems to be under control thanks to three lots of mesenchymal stem cells but my skin is healing very slowly so I’m still needing pain relief and oxygen.   I’m on a lot less than I was though and hopefully in the next week I can manage without.

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Managing a rare smile

As I have been so poorly I couldn’t get to Rotherham for ECP and Birmingham don’t do it.  Yesterday though me, Daddy and Monica the nurse went for a day trip to Rotherham via ambulance and providing I stay well I’ll be able to go twice next week.  It would be a lot easier if Birmingham Children’s did ECP and Mummy emailed the CEO of the hospital this week and the big bosses are now talking about it, so hopefully it’ll be soon!  ECP is the only thing that’s going to cure my GVHD so it’s really important I get it.

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On my way to Rotherham

I’ve seen the opthalmologist quite a few times because my eyes are really sore and dry.  He thinks the GVHD is being controlled and I have loads of ointments and drops but they’re still too sore to open most of the time, so I just do lots of sleeping as I can’t really play!

I do have some good news though, and that’s that last week I managed to get upto full feeds via my NG tube so I finally got rid of my NJ.  Mummy and Daddy were so pleased as they used to worry I’d pull it out at home.

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What a sorry state I am!

Ella went back to school on Thursday so Mummy and Daddy are having to take it in turns with one of them with me and the other at home with Ella.   It’s rubbish and I want us to all be together!

Hopefully I’ll be looking a bit better next time I do my blog.

Lots of love

Oliver
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