Mind the gaps…or shall I fill them?

It’s been 2.5 years since Herbie’s BMT and a very long time since I felt the need to update here. However I have recently been asked by two people why I no longer blog and so I popped by to see what I had missed. I had missed messages ( apologies) and I realised how much had happened in the time that I had been MIA. So as 2016 draws to a close I find myself reminiscing about Christmas 2014 and how far we have come … let me fill you in!

I left the blog just after the BBC documentary aired in 2015. It was a strange time for us as so many people were interested in our story and it all felt a bit surreal. The flip side was that Herbie continued to lose weight and a question mark hung over him. What was going on? Waseem was tentatively suggesting investigations to rule out gut GVHD and we had really hoped to avoid these. Herbie wasn’t interested in eating much but he was still full of energy and enthusiasm for life. He returned full time to school in September 2015 and I tentatively returned part time to teaching. 

By Christmas he was still losing weight,  albeit slowly, but he was gaining height and we finally stopped the ciclosporin which seemed like a huge milestone. The Peg and Hickman were still in situ as we embarked on 2016 but there was talk of changing to a button whilst an endoscopy took place to work out why he was losing weight. 

Herbie enjoyed his 7th birthday and as always we thought back to 2014 when he spent his birthday in hospital and felt so grateful! The year moved forward and we continued to go to the JR every 3 weeks for IVIG therapy ( immunoglobulin replacement) and to GOSH for appointments every 3 months. 

Finally Dr Waseem said ‘enough is enough’ as despite being on Ensure build up drinks 3 times a day Herbie was not gaining any weight and that just wasn’t right. So in June Herbie was called back to GOSH for his first overnighter since BMT to undergo two scopes to try to solve his weight loss issues.

This admission, although planned and routine, did stir up many emotions and memories that I had locked away. Dan took him to GOSH and stayed with him whilst I looked after the others at home and tried desperately to retain a sense of normality. Of course inside my head it was far from it! 

Thankfully nothing much was found but as there was a significant drop in lung function and a small patch that could have been GVHD in his gut he was given a new , much larger steroid dose!  20mg twice a day ( a big jump from 3mg once a day!) 

The idea being that there may well be some immune responses that needed dampening down that were causing the weight loss and the lung issues. 

It didn’t take long before the ‘crisp monster ‘ reared its ugly head and Herbie was once again obsessed with (and crazy about)  food and eating! The weight started to go up after 12 months of going down! By the next appointment with Waseem his lung function was back to normal too! 

However it wasn’t all straight forward…

When Herbie had his PEG inserted in 2014 we took part in a study. There were two different ways used to insert the PEG and we didn’t know which we would have. When Herb had a CT to look at his stomach and lungs for signs of GVHD what they found was not what they were looking for! His PEG has slightly pierced the top of his liver when it was inserted and so removing it was not going to be as straightforward as they had hoped and it certainly couldn’t happen as scheduled ( alongside endoscopy). This was an annoyance and so Herbie returned home from GOSH still sporting the original ( and now quite manky looking ) PEG. 

In September 2016 we were asked by GOSH publicity if we could attend a fundraiser that was taking place nearby. Herb was to ‘make an appearance ‘ and I was asked to say a few words. It was really quite emotional standing in front of all of those people and once again a packet of tissues came in handy! ( and a pair of sunglasses!) 

The steroids carried on doing their job and we enjoyed another fab summer. We started weaning back down as Waseem didn’t want to undo the good work of the Pamidronate infusions to help strengthen his bones. These had stopped earlier in the year after the DEXA scan showed he was back within normal range for bone denisity.  During the last week of the summer holidays we went away for a couple of days to Wales but one day Herbie was very sick and had a blinding headache. It was a shock as he had been so well all year. On our return the same thing happened but on the first day of term meaning that he missed his first couple of days of Year 3/2016-17. 

It soon appeared that the stomach bug was not the problem, Herbie was experiencing nasty headaches, with migraine-esque symptoms. He would often wake with with a headache and fuzzy eyes and feeling sick. He missed more days in term 1 2016 than  he missed in the whole academic year of 2015-16. We told ourselves that it was the drop in steroids and for a while we convinced ourselves but it’s hard to convince yourself the longer it goes on. We called GOSH. 

Waseem was thinking it was a medical reaction but thankfully wasn’t unduly worried! 

On our last visit to GOSH this year Herbie had one of theses headaches start whilst we were there. It was horrible for us but as usual our little trooper took it in his stride asking his consultant to ‘turn those bright lights out as they hurt my head’ and taking himself off to lie down on the bed in the consulting room! 

I dashed to the chemist on Southampton Row for calpol rather than wait for GOSH pharmacy to dispense it and within half an hour he was right as rain and eating sandwiches and dancing around in the park! Waseem , rightly, said these needed further investigation and suggested he would ask Oxford to organise a brain scan.

I don’t know about you but those two short words , brain scan, just fill me with dread. He’s had these scans before , when he had meningitis back in 2010, and I had that same sense of dread. What will they find? 

Back home we tried to carry on and put the request into perspective. There didn’t appear to be a rush on GOSH’s part so we decided it couldn’t be more than precautionary. Well we said that to one another and to friends and family but inside , once again, was a very different story!  Then a call from Oxford’s ID team increased the anxiety… they had a request from GOSH and felt he needed the scan asap. It appeared that the fact he woke with these headaches was a concern. I did my best to explain that it was only a handful of times and that he had been almost 3 weeks without one before the GOSH appointment. The Dr said we needed to come in  the following week. We wrote it on the calendar but we didn’t need to , from that moment it was all we could think of! 

 Suddenly Dan and I lost faith and started allowing ourselves to believe that the worst was inevitable. On the day of the scan we headed to Oxford and tried to be upbeat but we certainly weren’t fooling each other! 

The scan took place in Oxford in November 2016. We were told to expect results in 24 hours. I went back to work to keep busy , it didn’t really stop me thinking about it. 

The familiar train ringtone rang out from my phone , a signal that Dan had text me… 

It’s all fine, nothing there. Can’t bloody believe it! 

I read the words twice and then allowed them to sink in. I danced and jumped around ( I think my class thought I was having a party 😂) 

Relief… wow what a feeling as the worry and stress recedes. It was all good, probably a medicine reaction again . I wanted to laugh, cry and yell and hug everyone in sight. 

So we headed to the end of 2016 feeling positive. The other news was that the IVIG infusions were scheduled to go back to subcut at home meaning an end to the day in hospital every 3 weeks. This also meant that from January 2017 we could think about Hickman Line removal. Lumens , Hickey & Kenickey have been part of Herbie’s body since he was 5, he turns 8 next week! I had refresher training and we were up and running with weekly subcut infusions again.

Life looked to be back on track again. 

On December 10th Herbie came to find me in the morning looking worried. “The lumps on my neck are back ” he said. I thought he was going to cry. I looked carefully and found a solitary blister behind his ear…looking suspiciously like chicken pox 

It was the morning of the twins birthday celebrations and a Saturday. I tried to contact all of Herbie’s care providers but to no avail, a trip to A & E was looking likely. I finally got through to a dr in GOSH and he said we needed Aciclovir again and to go to the JR. By the next day it was spreading and looking for like shingles. 

Thankfully it looks much worse than it was as he experienced no pain just itching. It did mean he missed the last week of school and Christmas dinner at school AGAIN! 

So the gaps are filled. We start 2017 optimistic… we will celebrate 3 years since transplant this May. On Thursday Herbie turns 8. Life isn’t normal but it’s getting there x

6 thoughts on “Mind the gaps…or shall I fill them?”

  1. We are the family whom you chatted to in BMT clinic back in July 2015. We approached you as we recognised you from the BBC documentary that was aired a few days before we met you. We were there for our first BMT appointment and were very worried. When we read your blog later, we saw that you mentioned us there and wished us “all the luck in the world”.
    Our Emma had her transplant on 6th November 2015. She recovered well, despite some set backs.. We know, we’ve been lucky as most transplants are much much more complicated.
    We visited your blog a number of times in the last year hoping to learn how Herbie was doing. As there were no updates we assumed that Herbie has been discharged and you didn’t feel the need to keep posting. Then, to our great surprise, we met you in BMT clinic on 9th Nov 2016. We didn’t dare to approach you. We calculated it had been over 2 years since Herbie’s transplant and as Emma was being discharged from BMT during that visit I just didn’t know what to think and what to say… But I know now that I should have approached you and told you that it was nice to see Herbie and you and that we wish you “all the luck in the world”, too. G x x

    1. I remember that meeting so well! I’m thrilled to hear that Emma is discharged from BMT and doing so well. We were discharged from BMT quite quickly after transplant and went back to immunology, they share the same clinic which is why we are still there! We won’t ever be discharged from immunology as Herbie will always have NEMO.
      I would love for you to have come and said hello & I am surprised that I didn’t recognise you. That was the appointment he had the headache though and we were so worried that I must admit I was preoccupied!
      Thank you for the love and here’s to a long, happy and healthy life for us all xxx

  2. Hello…. so lovely to have an update, and I think I understand some of your feelings of not needing to blog so often now… sometimes just living life has to be enough, without trying to document/upload/evidence everything…

    But to say that we still think of and talk about Herbie every so often, when he pops into our thoughts – I am pleased you feel optimistic about 2017 and that he is doing so well now, I hope that continues (and that this year he will enjoy Christmas dinner at school!)

    Your strength and resilience comes across in your blog, and I have so much admiration for you all


  3. Hi Emily, I’m a postgraduate researcher at the University of Leeds, and I wondered if I might be able to talk to you about the documentary you made with GOSH and the BBC. Would it be possible for me to send you a message or give you a ring? Best wishes, Emily

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