Category Archives: John Radcliffe Hospital

Egg-sacally what has been going on?

T+339

Wow! Look at that number above. It’s shocking how close we are to a year post transplant and that I’m still writing this blog!

Since the last update we have had a few issues to deal with. I blogged previously about the tummy upset and recovery but you  may recall my last comment (in parentheses ). Well we headed to Easter optimistic of a healthy and happy time but those of you that have followed this journey from the start will know that our boy isn’t keen on the direct route (like his father) and prefers a scenic , often longer and more winding one!

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So basically the upset tummy continued with very little desire to eat and intermittent tummy pain with some sickness. No real pattern, no fever and no other symptoms to get a grip on.  I began to worry that a GVHD diagnosis was likely. Herbie was losing weight too. This was a double edged sword. He’s clearly been over weight for a while due to steroid induced munching but as the steroids halved his constant hunger diminished and his weight dropped. When he started the BMT last May he was around 18 kg, he has been as high as 27kg. This effects his blood pressure (he’s still on amlodipine daily to reduce his BP)  and his fitness levels.

The first week of Easter break started and involved a lot of chocolate. The other three munched their way merrily through tons of the stuff but Herbie still has his in his room untouched. We had the family Easter egg hunt at Dan’s parents house , Herbie dressed as a sheep to collect his eggs ( why not?) and managed to collect a lot.  He smelt the pizza and cakes that were put out for the tea party  but was not able to eat anything bar a sausage roll. He had fun though and was full of energy and loved seeing his cousins as always.

The Easter egg hunt bags
The Easter egg hunt bags

Before Herbie & Lily were initially ill with their mycobacterial infections we spent lots of weekends walking in and exploring the woods around where we live. With Lily initially not being able to walk far and then Herbie it’s been some time since we have visited our favourite haunts.  Dan decided to take the girls and Rufus for a walk in the Wychwood Forest.  Immediately there was protest from Herbie! He was absolutely sure that he wanted to go and he was so enthusiastic that how could we say no?  It was decided that we would all go and that Herbie could walk a little bit and then we would sit in the car (Lily too if she wanted to) until the others got back.

When we arrived at the gate where we would start our walk I suddenly remembered that it was quite an uphill  walk to get to  our favourite spot and that day it was particularly muddy so I knew it would be  tough going.

We set off with lots of chatter and excitement but after a few minutes Herbie started to huff and puff and I realised that we would be back in the car sooner than I had anticipated!

I was so wrong! That boy has such stamina and determination. Yes he got tired, yes he walked slowly and yes it was tough going but he did it and we made it to the flatter part of the walk (with photo opportunities on the way!)

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He did need to sit for a bit to catch his breath and have a drink. Then we walked on to the rope swing clearing.

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Once there  he even got to have  a little swing! We had such a lovely time! Dan had to give him a piggy back  to go back to the car but he did brilliantly. He was absolutely shattered when we got home but we definitely caught a glimpse of our pre transplant life.

Although these positive things were happening Herbie still wasn’t eating much and continued to have diahorrea and we spent most evenings wondering what was going on.  On the first two weekdays in the Easter break Herbie had his gammaplex and Pamidronate infusions for his immunoglobulin therapy and bone density.  These infusions through his Hickman line take hours and end up taking most of the day.  Despite an early start at the JR It was almost two hours before the infusion started and when the boys (Dan & Herb) returned home they were tired and grumpy.  On a positive note though Dan bumped into Dr Kelly , who we haven’t seen for a while,  and he came to see Herbie on Day Care and chatted to Dan.  He’s such a caring doctor. Herbie’s weight was down again but so was his BP which was great.

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The rest of the week was relaxed and Herbie seemed to be vomiting less but the pain in his tummy was requiring calpol at least once a day and he was waking to go the loo during the night even more frequently. The week ended with much excitement as the GOSH publicity department announced on their website that the third series of Great Ormond Street would kick off on April 28th at 9pm on BBC 2! So exciting as Herbie features in episode 1.  The excitement was short lived though as within days the schedulers changed the air dateimage .

Then on Wednesday we headed to London to see Waseem with Herb and Lily after a particularly bad night with Herb who was up loads in the night with tummy pain. On arrival in London he promptly threw up in the car park and announced he felt better! We headed to GOSH feeling slightly anxious.

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Waseem was joined by one of our BMT nurses Hayley. It was so lovely to see her. She was one of the loveliest nurses , always willing to listen and take time with us during night shifts.

Waseem seemed pleased with Lily’s progress and agreed to temporarily stop her immunoglobulin replacement therapy during the summer with a view to restarting in Autumn.  He showed Lily her recent CT scan images and explained them to us. Her lungs are still very abnormal but there was some improvement.  As her lung function continues to improve he is reluctant to stop any of the other meds as she still has cavities in her lungs which bugs would love. We discussed Herb and everything that had happened since our last visit, including the small lymph that was up just where he had it drained last year. It was decided to leave meds as they were right now.  Waseem said it was difficult to tease out whether the symptoms were gut GVHD or down to immune reconstitution  and the burden of micabacterial infection remnants. He didn’t seem overly concerned apart from the weight loss as he now weighed 25.9kg.  It was agreed to monitor and if there was no improvement in two weeks or more weight loss he may need to organise an endoscopy to rule out or confirm GVHD.  He explained that he didn’t want to increase the steroid (the usual GVHD treatment) because of bone density issues and also it suppresses the immune reconstitution again.

We headed to the outpatients ward on Safari for Lily to have bloods and bumped into Amy, another of his BMT nurses, and had a lovely catch up. Again, she was soo lovely during transplant & she also nursed Lily in Robin back in 2013.

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Before we left we met with Cassandra and Rachel from the GOSH publicity team and Ash the photographer. We had publicity shots done and chatted to them all. Three lovely people who even got the kids a gift bless them! The whole programme thing is becoming more real!

We left feeling  hopeful that Herb’s tummy thing was an immune issue and would resolve itself. That was the last time to date that Herb vomited and  although the tummy pain seemed to increase over a couple of days and the restless nights too, suddenly, just as quickly as it started , it just stopped. Last week Herb announced on Wednesday (a week after the appointment) that he wanted breakfast for the first time in about 4 weeks. He’s now eating and drinking more, no diahorrea  and his energy levels are up and no calpol has been needed for almost a week. We are beginning to think Waseem’s hunch about immune reconstitution was correct. (thankfully!) On Friday his teacher met me to say ‘she thought he was in fine form!’

As I type this we are heading into a new week and one that will bring back a few memories. I will blog about that nearer the time.  However one milestone, other than 11 months post transplant, which we hit this week was the anniversary of the Rays of Sunshine wish from last year . Some of you will remember he had a wooden ‘treehouse ‘ .

Here he is on it a year ago pre transplant…

My Small

 

and yesterday, 11 months post transplant

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He he still has some way to go to get his hair back to the longer length but he’s on his way. This milestone really made me stop and take stock of how far we have come.  In many ways this year has gone by in a blink of an eye. I was thinking of two people as I wrote this…

Angela D, who may not even read this, but who was my BMT  lifeline this time last year. She had been there, done it and got the t shirt and her words often consoled me on days when my brain struggled to process all of the BMT info being thrown at me. She once said to me

” I know exactly how you feel…everything runs smoothly then all of a sudden something sends you on a different path. It’s not easy but remember other children have experienced this before. Put your trust in the doctors”

I have always done that, I have always trusted them and will continue to do so.  Thank you Angela for your friendship (and happy birthday!)

.The second person is Sharon. Her son and daughter both need a BMT and she will be heading to GOSH with her son in June to start. She is in the same place that I was last year but I want her to take comfort that Angela was right, Herbie & I  have  experienced what her and Zak will and next year Sharon you will be wondering how you can already be close to celebrating a year post transplant. Stay strong people.

Finally, what a lovely Easter surprise Herb had in the post from the  lovely Hope. A card , letter and gift! Thank you Hope. Herb says he hopes you had lots of chocolate at Easter and he loved hearing from you again!

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So time to sleep. I have no doubt tomorrow will be full of yogurt, chocolate milk, prawn cocktail crisps and Skylanders after school for Herbie as usual!  He’s getting there,  now if I could just get him to eat his flipping Easter chocolate it might stop calling to me from his room!

 

Oh and another thing…

T+316

So it appears that my posts are like buses! You wait for ages and then two in one week! I realised that I missed out a few things in the last blog that I had wanted to talk about and also an update on Herbie is probably a good idea too. On Thursday I woke to a small face staring down at me  and a voice saying  “I want to go back to school, I feel better now.” We had agreed he wouldn’t go back despite him feeling back to normal but he was having none of it. Dressed for school and insistent how could we say no?  So normal service resumed. I went to the supermarket to get a few things and suddenly felt quite anxious that I was unable to get a signal on my phone. What if the school needed me? What if he got unwell? What if? I needn’t have worried. When I arrived at school at 11.55am he was there, beaming and full of beans. I had a full dissection of his morning and as he sat on the sofa drinking his chocolate milk and eating pretzels he piped up with ‘it’s Thursday isn’t it? Yippee! Fish and chip day!” I was so happy 🙂

Friday was a half day at school for the younger two, ending with an Easter bonnet/Hat parade. Herbie enjoyed creating his hat with big sister Lily and wore it with pride. The day just got better and better with a lovely bag of sweet treats from best buddies Lily & Sam in his draw and then he was chosen as star of the week which meant he got to bring the class bear home for the holidays. I thought he might burst with happiness!

My little Easter Bunny
My little Easter Bunny

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We went back at 1pm for the parade and Herbie ran back into his classroom. He came out moments later leading his class , as star of the week, in the parade. His happiness evident. What a great end to his term! Today he has been totally on form, eating, drinking, playing & happy.

In other news, the BBC Documentary series about Great Ormond Street is closer to airing which means things are stepping up a gear. Catey and Hiral arrived with our footage. We haven’t seen the entire episode as we are not allowed to see the other featured children. As you can imagine we are also not allowed to talk about what is in the programme but I can say two things. I needed tissues to watch it and we are very happy with our representation. I hope that it will be watched by many ( I will post as soon as I know the exact air date) and  that it will encourage people to join the Bone Marrow Donor register and potentially save the life of somebody that finds themselves in a life threatening situation. I also hope that the immunology and BMT teams will be seen for the amazing work they do and the difficult decisions that they are faced with. Parents are hoping that they have every answer but with most PIDS things aren’t that simple. This can be frustrating for the parents but also equally frustrating for the medical teams whose sole purpose is to save lives. So many PIDS are newly discovered, extremely rare and outcomes are hard to predict. The GOSH publicity department have been in touch with us about publicity surrounding the episode. It’s going to be an exciting and strange time.

Herbie asked me about the blog today. He said “if you email the blog to my doctors then they wouldn’t need to see me anymore because they could just read how I am ” It made me laugh that he sees life so simply when his is often so complicated. One thing I have noticed is that memories of transplant are already fading and selective for him. He remembers some things so clearly and fondly. Certain nurses, special times when he got to do something fun. I’m so happy that he is forgetting the less happy times. The only thing he often remembers with a grimace is the weekly NPA “it was every Monday and I HATED IT!”

So we are ready to enjoy the Easter break, despite two days in the JR next week for IVIG therapy and Pamidronate and then the following week a day in London at GOSH. Let’s hope things are back on the straight and narrow for a while.  ( but don’t hold your breath 😉)

“That was awesome”

T+242

Lots of reminiscing in the first post of 2015. 6 years ago on Monday Herbie literally tumbled into my arms and our family was complete. Born just before the sun came up on a rainy day in January we  were thrilled will our dark  haired little bundle of loveliness. He weighed 7lb 1oz (the same weight as one of our twins (Lily) was at birth although he seemed tiny after Rufus who just shy of 10lb) and was perfect.  )

 

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Last January he turned 5. It wasn’t what you want for your child’s 5th birthday. Having been admitted into hospital five days earlier (with a rash that his consultants thought was shingles) he spent his 5th birthday having a blood transfusion and feeling pretty rubbish. He was thin, tired and although he tried to be enthusiastic about presents and the balloons and cake etc it was obvious that it was to keep us happy.

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Fast forward to this year, on Monday he turned 6! The first difference was that he was at home. The night before he was more excited than Christmas Eve , he couldn’t sleep. In fairness there was more than just the birthday on his mind. More of that  in a minute.

The big day arrived and it really was a big day. Herbie wasn’t just turning 6 but he was returning to school for the first time since pre transplant.  There were a few uniform issues. He no longer fits the school uniform. His age 5 polo shirts were replaced for age 8 ones! His trousers were elasticated!  But he didn’t care one bit…he was going to school!

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The birthday continued with an hour and a half in school (I was in the building as the line safety training hadn’t been given to staff yet) and then we returned home with more gifts to open.  Herbie loved being back with his buddies at school though. Was I nervous? Yes, every cough, sneeze or runny nose around him makes me a little anxious. Was he? Not a bit!

This year candles were blown out and cake was eaten and plenty of excitement was apparent ! He requested a roast dinner with sprouts! Dan made him one of course.  Another milestone met, another sad memory overwritten. As I tucked him up in his bed that night he cuddled me and said “Today was AWESOME”. Can’t ask for a better verdict than that! 

Today we had our first 2015 outpatient appointment at GOSH. As we drove there this morning we found ourselves, once again, thinking about our first 2014 GOSH appointment. We  remembered the shock of the discussion about BMT being the best option for Herbie when he was better. The tears on the M40 as we drove home trying to digest what we had been told. Oh how 12 months changes things. There were smiles, ‘happy new year’ greetings with the now all to familiar staff. We bumped into one of our fab Robin nurses, Lucinda, on our way in. We bumped into Helen, his GOSH teacher, on our way out.  As we waited  Paul Veys came to collect some notes and Herb shouted “I’ve still got my eye on you Paul Veys” making us all chuckle and prompting a mini catch up chat. Then Catey, from the BBC crew came to talk to us about the final edit of the film and what we could expect to see. It’s actually quite exciting!

In the appointment, Waseem was happy with progress. A steroid reduction plan was made and for the first time the hint of a wean time for cyclosporin was released from the bag. It’s a slow process for Herbie but worth it.  All in all things are headed in the right direction.

As we went to make an appointment for 6 weeks time we bumped into Juliet and Sebastien , our friends from our time on the BMT wards. After a catch up with them and Catey, Dollan & Sam from the film crew we had promotional photos taken for the series before heading back home.

We are feeling positive…maybe, at last, 2015 will be a year to remember for positive & happy things. Friday we hit the 8 months post transplant milestone  and next Thursday Herb is T+250! Time is flying!

 

Happy Mothers Day, Happy Birthday and WOW WOW, unbelieveable!

T+128

I have so much to write about that I’m not sure where to begin? So in the wise words of the King in Alice in Wonderland I’ll ” begin at the beginning and go on until I come to the end.”

Last Sunday Dan left for Wembley accompanied by my sister Charlie, my brother in law Joffy, Dan’s sister Lucy and our sister in law Wend and their solitary cheerleader , my brother in law, Mat. They were heading to the Sure Run to the Beat 2014 where they completed a 10k run. They managed to raise over £6,000 in sponsorship for Great Ormond Street Hospital Charity which was amazing.

Herbie's Dream Team
Herbie’s Dream Team

With that success in the bag the week continued in a positive mode. Monday was Herbie’s IVIG infusion day which meant an 8.30am appointment at the JR in Daycare. The traffic was bad and we arrived almost 25 minutes late but the nurses reassured us that it wasn’t a problem. Herbie also needed bloods taken for his weekly blood levels, ciclosporin levels, amikacin levels and, this week only, he needed the first of his line cultures to check for a line infection.
Although we had arrived at 9am by 10am nothing had happened. As 11am approached a student nurse popped in to do a set of obs. I pointed out that we had another appointment with community nurses at home at 2.30pm (IVIG takes about 3 hours to infuse). Although the nurses smiled sweetly nothing seemed to happen! Herbie was beginning to get rather fed up and so was I , finally at 12.50pm the bloods were taken! Nearly 4 hours after we arrived! The Gammaplex went up. It has to be given over 3 hours with the rate increasing over time if tolerated. Herbie sometimes gets back pain and despite Piriton he got it this time.the gammaplex kept getting air in the line as it was so frothy and so the alarms kept going off and it took ages!
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We finally left the JR at 4.45pm and were home for 5.30pm , after battling Oxford’s rush hour, and greeted by the community nurse Sarah who was setting up his iv’s!
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Herbie has remained fever free since my last entry and this means that we are now 18 days at home. Doesn’t sound much but the amazing fact is that that is the longest time spent at home since transplant!

Back in January of this year Herbie turned 5. He was in the JR and had a blood transfusion on that day. He had wanted a new green maxi micro scooter but we didn’t get one for his birthday as he was so unwell. Finally, at the grand old age of 5 years and 8 months Herbie was able to finally take ownership of a brand new, green, scooter! Happy belated birthday to my gorgeous boy. He loved scooting around the village on it!

Happy birthday (+8 months!) Herbalicious
Happy birthday (+8 months!) Herbalicious

First scoot on the new wheels
First scoot on the new wheels

However, as always he overdid it and got ‘tummy ache’ resulting in an hour of lethargy.
When Victoria, his outreach teacher, arrived he was not very responsive which was sad.
Herbie wasn’t the only one to have a late celebration. I finally got to use my Mother’s Day 2013 (no that isn’t a typo) voucher on Thursday and had a wonderful hour of pampering at The Junction in Witney. Happy Mother’s Day 2013 to me! I really needed that hour, it was a great recharge for my running on empty batteries!

As I type I can confirm that so far the line cultures are still negative for infection. Based on the fact that fevers have stopped that is hardly a surprise. The GVHD has resolved leaving his skin a tad blotchy (nothing new there!) and a little dry but nothing extra moisturising won’t cure. He is meeting fluid targets and thankfully hasn’t had an over night water bolus for weeks and no over night feed since his time in GOS. His meds remain unchanged but his bloods are looking much better again which we hope means that we are no longer derailed and are back on schedule.

HB 12.2
WCC 5.93
Neutrophils 5.16
Lymphocytes 0.30
Platelets 220

His HB and Platelets are fab, no transfusions for months, neutrophils & WCC back in normal range and lymphocytes coming back up nicely. Fingers crossed these improvements continue. Next bloods are Monday.

Herbie is enjoying the return of his outreach teaching. One hour a day again but this term he’s got a job share which is nice for him. New faces are always welcomed when you are home most of the time with restricted visitors. This week ,in keeping with his school theme, we made some soup. It was yummy!
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Dan and I are tentatively thinking ahead. It’s still very early days to make plans but we have so many lovely treats awaiting us courtesy of lovely friends and family that we finally feel we could think about using. Tea and cake at Huffkins, meals at The Fishes, The Chequers Smokehouse (a recent addition from my lovely work colleagues), afternoon tea at The Randolph and a meal at Cafe Rouge. Hopefully fun times ahead at last!

Friday was the eagerly anticipated Kate Bush gig. As previously blogged a wonderfully generous member of my family had offered us tickets way back in the year and it’s been pulling me through transplant ever since. Last week it transpired that only one of us would be able to make it after all as Sam’s name was printed on the tickets and photo id was required. Obviously we were disappointed but Dan, knowing that I have been a fan since she appeared in the seventies said I needed to go. Sam had done all he could via phone calls etc to try to get around the restrictions but had hit a brick wall.
Dan decided to come with me but go to the cinema whilst I went with Sam to see Kate! Traffic was awful and we arrived late to meet Sam who had been waiting outside the venue for at least 45 minutes! He asked us to try to get in together although signs everywhere screamed at us to get the photo Id ready. As expected the guy on the door said no entry without ID and we explained that we were with the ticket owner. Sam showed his ID and we were in! Sam didn’t get to see her in the end and I was totally overwhelmed by his generosity and thoughtfulness xxx We had an amazing night, The nineth wave was amazing and we were treated to a night that overloaded our senses, made me laugh and (for the first time ever) made me cry ( Running up that hill just transports me back to transplant now). All I can say is WOW WOW WOW WOW…UNBELIEVEABLE!

So I end this blog entry , 128 days post transplant, in a very positive place and feeling like I am on the edge of the diving board, about to plunge into the next pool. Hopefully this one is full of warm, crystal blue water and we can wallow there for a while.

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Taking the scenic route

Herbie had been really on top form since his last hospital stay and we honestly felt the best since transplant. Energy levels were great, eating well, drinking his target of 1600ml without problem and temperature staying below 36.5. We discussed regularly in the evening how things seemed on track at last.
T+108 came and I was greeted at 7.30am by a smiley boy, already dressed and on top form. I remarked to Dan how good it felt seeing him back to his old self every morning. Dan gave the 8am meds and headed off for a run. He has the 2014 Run to the Beat 10k for Great Ormond Street this month.
As soon as he had left Herbie complained of tummy ache. Now he does take lots of meds at 8am, 8 different ones, so occasionally he moans about tummy ache. I gave it half and hour but by then he was holding his tummy and quite upset. I took his temperature, 36.4, perfect, so gave him calpol for his tummy.
Dan returned from his run to find a little boy doubled up on the sofa, wincing saying “it really hurts, that calpol is rubbish”
I took his temperature, 37.5 suddenly…it felt like a rerun of the last time we were admitted. His temperature hit 38 and that, as we all know, automatically starts the admission and TAZ protocol (AGAIN) for a line infection. That means 48 hours in hospital even though I think everybody knew it wasn’t a line infection!

The timing of this admission was dreadful, the following day the twins were due to start secondary school, I still hadn’t managed to get shoes or trainers that would fit Kitty and Rufus started back a day later so we needed someone to look after him if we were in hospital.
There were many tears shed as I said we needed to contact GOS. However Herb just said “can I take Dogdog and my pillow please’
I was sad in one way that he’s resigned to going back in but happy in another that he wasn’t kicking up a fuss.

He slept on the hospital bed as soon as we arrived. He was very hot but once cultures were taken from his line he was given calpol. However he threw up and it was decided he needed it iv to ensure the temperature came down. His skin was getting very blotchy and Dan and I realised quite quickly that this was probably GVHD again. Our worry was that it was also in the gut.
The JR consulted with GOS and an ultrasound was ordered to see what was going on in there.
I had to leave to get back home to sort out the girls ready for Secondary school. Dan took him off for ultrasound, he was laid out on his bed, hot and asleep. I felt awful leaving but the girls needed me.

That evening Dan reported that the paracetamol had kicked in and Herbie was bright and cool and happy. The ultra sound was ‘unremarkable’ and nothing was a worry to the doctors. This was great news but it was agreed by all that this was GVHD rearing it’s ugly head again. This is annoying as Herb is in the lowest category to get it really, sibling matched donor, 10/10 match, same blood group so no changing of blood group, same gender donor!

Still, it was a relief that the ultrasound looked good and they upped the steroid again(we had just weaned that too!) to counteract the GVHD.
Once the temperature was gone he was ‘old Herb’ just a little blotchier!
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Still blowing raspberries at the doctors (and some poor nurses!) but always happy to see the ward play specialists Grace & Sam and Juliet the hospital school teacher!
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By the evening it was decided, in consultation with GOS, that if temps stayed away, culture were negative and GVHD under control he could stop the TAZ in the morning and could go home on Wednesday.

Day T+110
Wednesday arrived, the three others were all packed off to school sporting new uniforms and with much excitement and I headed to the JR again.
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I swapped with Dan, who went straight off to do some work, and arrived in Room 25 (yes we are in that room again!) to find it full of doctors! Herbie was holding court! The doctor in charge said that the iv’s were to continue, which was not what we had thought was happening, and that we MIGHT go home today! Grrrrrrrrrrr
They also wanted a repeat ciclosporin level as it was only 50 on Monday and it should be between 100-150. Ciclosporin is one of the immune suppressants and if levels go too low it can cause GVHD. However the level was taken almost 24 hours after the last dose given which is probably why it was low! Annoyingly though they only told us they needed a level at 10am, so his 8am dose had been given! This meant staying until 6pm.

Luckily Juliet came twice to do science and maths with him which he loved and she commented on how well he had come on with his reading etc since January.

Working with Juliet
Working with Juliet

Herbie continues to be blotchy but thankfully it isn’t getting worse or too itchy. It’s not pleasant to look at but he’s in great spirits. More importantly…he’s upstairs asleep in his own bed! Yes we are finally home again. Now I’m not a gambling person but anyone placing bets on when the next stop at the local might be? Herbie is just like his dad, never takes the motorway when he can take the longer, windier and more complicated ‘scenic route’

Bloods
HB 11.5
Platelets 75 (annoyingly they drop with fevers)
WBC 3.5
Neutrophils 3.29
Lymphocytes 0.11 (dropped quite low again!)

GVHD
GVHD

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100 days and beyond

Today is T+105

It’s been a week since I last updated. About an hour after the last blog was posted we were informed by the doctor that Herbie could go home after 24 hours observation without TAZ. This went down like a lead balloon with Herbie. Dr Ed, who was given the unpleasant task of passing on the information, knew what the reaction would be and asked me to go to the nurses station to talk to him out of Herbie’s earshot. Whilst we were chatting Herbie appeared by my side shouting “I’m going home you know , I’m not staying here!”
It took a long time to calm him down but he eventually he realised, one more sleep and he could go home.
That night I asked our nurse , Amy , if she could get our blood results completed in our shared care folder ready to go home in the morning. Later the doctor arrived with the folder, she wanted to ‘give me the heads up about the bloods.” It all sounded a little ominous.
This is what she was worrying about…
On arrival Herbie’s bloods were as follows
HB 11.8
WBC 4.67
Neutrophils 3.56
Lymphocytes 0.42
Platelets 81

Over the last few weeks he has had a lot of TAZ and this can drop his counts which we have seen. So after another 50+ hours of TAZ it wasn’t a surprise to see they had dropped again but it was a worry.

HB 10.5
WCC 1.73
Neutrophils 0.95
Lymphocytes 0.29
Platelets 72

The dr said that GOS and Prof Pollard were aware but happy for us to still go in the morning. I won’t lie to you, I was shocked to see how low everything was. It was not unlike the days in GOS in the early days after transplant. I hadn’t expected to see numbers that low again.
We agreed that another blood sample be sent in the morning before we left to see if the trend was continuing downwards.

T+99 we were ready to go home rather early! Herbie was dressed and packed up at 7am. The blood results came in and they were not what I had hoped.
HB 9.9
WCC 1.38
Neutrophils 0.61
Lymphocytes 0.29
Platelets 69

The neutrophils were now well under 1 and close to needing GCSF, something we hadn’t needed since early June. We returned home wondering how this would all pan out and hoping that by Tuesday, when the next bloods were due the trend would reverse.

Herbie settled back at home and Dan and I wondered how long we would get this time.
Things have settled down this past week and the bloods picked right back up on Tuesday as follows…
HB 11.5
WBC 4.74
Neutrophils 3.56
Lymphocytes 0.47
Platelets 81

Herbie still has a 1600ml fluid target but thankfully since returning home we have not needed water boluses over night and the pump has stayed well and truly in the cupboard (which is just where we like it! )
We have almost weaned the steroid and the MMF now so things are moving forward and despite how completely mad this roller coaster ride seems to us GOS say that are extremely pleased with his progress post BMT!

One day this week we were concerned that Herbie’s temperature might be rising again but his body seemed to control it going from 37.6 back down to 36.8 without the need for calpol or a call to the BMT on all reg.
He’s been bouncy and happy and just a little stir crazy, can’t wait to get him out and about!

So as the new school term approaches I greet it with mixed emotions. My first born Lily, so seriously ill last summer, starts secondary school with her twin sister. She is happy, healthy and a completely different girl to the one who suffered so much last year. Last year she returned to Year 6 with a cushingoid face, tiny frame, almost unrecognisable from who she is today. For that I am so so grateful.
This time last year I was starting to get excited about my new class, home visiting etc. They were a fabulous class, with so much promise. I hoped to be in school all year, unlike the year before, and was confident about that.
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He was an excited 4 year old boy who couldn’t wait to join his siblings at the local primary school. November the 15th 2013 was the last real day he attended. He’s done a few sessions since but literally a handful. He won’t return to school to rejoin his class mates in September and my class of 2013-14 have moved on to the next teacher and my new class will remain names on a list until Herbie is well enough for me to return. That makes both of us sad. However Herbie will get to see his lovely outreach teacher again which makes us happy!

I have so much hope for the future though, things are going in the right direction, we will keep going.
I received a lovely gift from a friend’s mum this week…couldn’t have been more apt…thank you
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Oh no he isn’t ! Oh yes he is!

The last few days since we left the JR have been lovely. Herbie has been on top form and we finally started to get into the swing again of being a family of 6 in the summer holidays.
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I won’t lie, reading about everybody enjoying sunny weeks abroad or by the sea in this country did make me sad that it was once again something we couldn’t do. Even days out are impossible. The summer holidays are flashing by and to me they feel like I haven’t started them yet.
Being at home, as great as it is, is not without it’s glitches. Firstly there is the feeling of Groundhog Day . Every day mirrors the one before. Medicine times rule your life. Meds are 8am, 1pm, 3pm, 6pm and 11pm & Community nurses come daily for a few hours leaving time from 8am -12.30 and 3-6pm to do anything.
Another problem is acclimatising the children to being back together. Herbie is now a more demanding 5 year old, wanting his own way and expecting to get it! This is particularly difficult for Rufus, being only 6, to accept or tolerate.
However, despite all of this I know all of us would rather be at home which was why, on Tuesday, 6 days after we were discharged , T+95, we were gutted to be back in hospital for the 3rd time since discharge from GOS.

The morning is a telltale sign with Herbie. He wakes full of beans and if he doesn’t alarm bells sound. He woke complaining his tummy hurt. It seemed to get worse and he wouldn’t eat or drink. A hot water bottle was hastily filled and it was rubbish to see him laid out on the sofa obviously in pain.

A call to GOS helped ease the worry. We were to give paracetamol as he was afebrile , 36.4, and see how it went. If it happened a gain we were to call back.
The calpol did the trick and for a few hours he was happy although certainly something wasn’t quite right.
The pain returned and this time when I took his temperature I was sad to see 37.7. Now although it’s not a temperature per se , his temperature had not gone above 37 in the last 10+ days. Something was brewing.
Another call to GOS. We were to retake in half an hour and call back. In half an hour it was 38.1. Automatically starting the GOS protocol of TAZ/PIP starting and being given for 48 hours and line cultures taken. This meant going back to hospital for the third time since transplant. None of us were happy.
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On arrival we were met by our nurse and then a doctor from the Acute Team who didn’t know him that well at all and a doctor from the ID team , who knew him very well, had made the plan with GOS but was on his way home.
Frustrated I had to go through everything again with someone who doesn’t know him but pleased our usual team had liaised with GOS and knew the plan.
So fast forward to today, day T+98. We are still in our local, despite GOS saying 48 hours on Tuesday, despite no abdominal pain since Tuesday evening, despite no fever since early Weds morning, despite nothing growing. The reason is that his CRP was 80 or something similar and had increased slightly since the day before. I am no medic but from conversations etc I know that CRP is a marker for inflammation and infection and is usually under 10. I also know that it lags behind the clinical picture.
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Herbie is now so fed up with hospital stays, he’s becoming increasingly grumpy, shouting at doctors to get out of his room and asking everyone who comes in if he can go home yet.
Yesterday Dr Ed suggested time outside. Herbie was thrilled to venture to the park opposite that thankfully was empty. It really is so boring sitting in a room day after day especially if you have done that for approximately 16 weeks so far this year!
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Fun on the swing
Fun on the swing
Outside!
Outside!
Escaping from the hospital
Escaping from the hospital

On our return it was confirmed that we would stay again last night which made everyone feel flat. To cheer Herbie up we waited until 9.30pm when most of the ward were asleep and headed to the , normally out of bounds, outside playroom.
Herbie enjoyed being able to go there once more.
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Sadly another child arrived and although the parent said they would stay in the inside playroom Herbie became anxious that he might come in and he might ‘get sick’
Back in the room we amused ourselves with games and iPads
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And some Ninja exercises apparently!
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Finally I persuaded him that sleep might be good, it was midnight!
Today we are just sitting here waiting for news, will bank holiday be spent in hospital or at home?

The wonderful Play Specialists here make life more manageable for us both. Today he was allowed to have the first go on a new acquisition of a motorised tractor. Grace and Sam arranged for him to take it down the back corridors and in the Community Paeds outside area. He had a fab time!
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They are also fundraising for more resources and asked Herbie to feature on the poster! He was thrilled!
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In other related news, it has been decided that I can’t go back to work in. September despite really wanting to. I can’t offer assurances that I will be there permanently yet and that isn’t fair on my colleagues, the new children or Herbie and my family. I am very sad as I miss teaching so much but I was also relieved that my wonderful colleagues took the decision from me. It was one less pressure.

Herbie continues to get gifts, post etc.
Another wonderful holiday letter from Hope, presents for both Herb and Ru from Old family friends Diane & Derek and from Texas, a parcel containing a plethora of goodies and this amazing tshirt from Try and her family. The tshirt is from Counting on Hope, https://www.facebook.com/CountingOnHope.
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Donuts from Vic & family!
One thing we are not short on is love, friendship and support!

Is he going to be out for bank holiday weekend?
I hear shouts of
“Oh no he isn’t!”
“Oh yes he is!”
I really feel like we are living a pantomime!