Do we know those people?

T+438

I find it quite bizarre that it’s been almost 500 days since Rufus donated his cells to Herb. I guess that watching it again on the television made it feel like yesterday. Things have been ticking along nicely since school ended for summer and we are all determined to make the most of the holidays whatever the weather.

On Wednesday last week we had a check up appointment at GOSH. This was our first appointment since the programme aired and was the day after episode 2 was transmitted. To be honest we joked on the way to London about Herb being a celebrity but I don’t think we had any idea what things would be like when we arrived!

First of all we were greeted by a large poster of myself and Herbie at the entrance to the hospital! Although we knew it was there (as a friend had sent us a picture)  it was still surreal to see it!

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Herb, cheeky as ever, suggested he should cover my face as he’d done most of the hard work in transplant! Finally he agreed to pose with me too!  As we left the entrance we were greeted by numerous people (none of which we knew) who told us that they had watched the programme and which bits they had enjoyed and also how great it was to see Herbie looking so well. Herb enjoyed a few high fives with strangers and seemed to love the limelight.

Once in Safari Outpatients we were greeted by Louise on reception who asked Herb for his autograph, she was also in the programme so we asked for hers too! 😂 We also bumped into some BMT friends and Herb enjoyed some table football and iPad time with Ryan (who celebrated a year since his transplant this week.

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One strange thing about going through transplant is that you meet lots of BMT parents and you see their children through the windows of the rooms as you walk through the wards (especially in Robin Ward as you go into Fox Ward daily too to the BMT kitchen and milk room) and you hear daily updates about them from their mums and dads but the children don’t ever meet as they are isolated from each other! I used to tell Herbie about the other children every day. He would often ask how Jacob, & Seren were or whether Mason was having a bath when I went to get our bedsheets or if I knew which game Sebastien was playing on his console. He would ask Helen, his teacher, w hat Milan was learning with her and ask me if he was building Lego. This curiosity about others who have had or are having BMTs continues. I often update him on his BMT buddies, he knows Jacob is starting Secondary school in September, that Seren is doing well  and that Sebastien lost weight like him and needed supplements. He feels sad for baby Jack (as Herb calls him)  when I say he’s back in GOsh. He’s cried about Mason and more recently over Milan and he’s shown a little bit of the green eyed monster when he learnt that Ryan had had his lines removed. It’s a strange thing being part of the BMT family. So for Herb to get to see Ryan and chat was lovely.

As we waited for our turn to see Waseem we saw many of Herb’s BMT consultants (Dr Robert Chiesa and Dr Juliana Silva ) and BMT nurses and they came to chat and say well done on the programme which was lovely. A lovely couple chatted to us, they were there with their young daughter. It seemed that they had watched us in the programme too. They thanked us for doing it and said it had been helpful to them as they were going to transplant too and were, understandably, worried. Dan told them about this blog, I hope they found it and wish them all the luck in the world.

Herb was weighed and had his height (114.8cm)  and BP (105/69) done. His weight had dropped again , 9 weeks ago he weighed 24kg (although it was really 23.6kg without his hoodie but Jinhua let us put the hoodie back on ) , this time he was 23.4kg. The day before we had seen a dietician at home at the request of Waseem.  We discussed what Herbie ate and she plotted his height and weight. Her weight chart showed that he was just shy of the 75th centile and she felt he wouldn’t be able to gain the weight that GOSH wanted him to as boys don’t put much weight on at this age and if he did it wouldn’t be rapidly. She had sent this information to Waseem. He made it clear that he was still worried about the rapid drop in weight and the fact that he was still losing. However, he also decided that there was a risk in doing an endoscopy to check for GVHD & a risk in dropping steroids so we agreed to tentatively drop the steroid and watch carefully. The drop would be from 5mls daily to 4mls for two weeks. If this was tolerated we would drop to 3mls for another two weeks and should that be ok he would hold the steroid at 3ml and begin to wean ciclosporin again. We felt these were sensible steps. The last CD4 count was 80 which is very low for a year post sibling transplant even with steroid and ciclosporin still in place. However Waseem reassured us that these are ‘just numbers’ and that the fact he’s been at school and stayed well etc was a good thing. He felt that his thymus was ‘feeling rather insulted’ by the chemo, micabacterial infection and meds but that it would be ok it just takes time. We do want his CD4 count back up before the winter though to protect him. Bloods were taken to see what was happening with his counts now. Results should come next week. Fingers crossed.

We left outpatients and headed to Safari Daycare to get the bloods done. People smiled at us and we’re very friendly. I saw Keano (also featured in the programme) and his mum in one of the isolation rooms. Professor Persis Amrolia stopped to chat to us about the programme, asking Herb for his autograph and saying he thought it was a good insight. I felt quite pleased that he cited certain things we had said as ‘insightful’. He is such a lovely man.

Then it was time to head to Robin Ward in the hope of seeing a few familiar faces. Herbie was very hopeful that Rehka, Amy or Ella would be there and he would have loved to have seen Maxine or Lucinda or Holly or any of his regular nurses/HCAs. We chatted to Nikki and then the nurses working popped out to see him, familiar faces and all so happy to see him. Sadly Rehka had worked the night shift and no Amy or Ella but he enjoyed catching up.

I also got to catch up with Sharon, Zak’s mum. She is currently in Fox Ward with Zak as he is having his BMT (10 days post transplant as I type) . Herb got fed up of the adult chat though and left the ward and ran to the lifts! So it was hop back to The Lagoon and then home.

So the steroids are currently dropped to 4mg daily and we are watching carefully. Herbie is enjoying the start of the long summer break. We created Summer’s Bucket List. A list of things we all wanted to do before summer left. It’s been such fun so far, after the last two summers off illness and hospital admissions we have everything crossed that 2015 might be better…it’s starting well! I’ll leave you with some of the things we’ve done so far and a quote.

” Aah, summer – that long anticipated stretch of lazy, lingering days, free of responsibility and rife with possibility ”

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Lights, camera, action

T+430 I’m sure that those of you that we don’t see regularly are wondering what has been happening in the last month or so. Well in the main it is all very very positive. Herbie continues to attend school and last week he did a record 4 full days and 1 half day. He is still loving being back at school and manages the full days well. I too have returned to school and just like Herbie I am loving being back in the classroom. I have been quite overwhelmed by the wonderful messages and comments from my colleagues, pupils and parents. Despite all of the sadness in the world there are still plenty of wonderful people.

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The most exciting thing that has occurred is that the transmission date for the BBC documentary on Great Ormond Street that we were filmed for was confirmed. July 14th, BBC 2 at 9pm.  We have been involved in lots of publicity to help raise awareness of it and of course the need for donors! Herbie can’t quite fathom seeing himself in papers and TV listings magazines! He asked me the other day “why am I in the paper again? Do people like me? ” On the day of transmission we were filled with a mixture of excitement and nerves. We were able to speak to Catey, Hiral and Dollan from the TV crew who were offering us support.

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The previous day we had gone to radio Oxford to be interviewed. You can hear it here…  Kat Orman interview. Once that was transmitted on the Tuesday morning the phone, Facebook and Twitter feeds started hotting up! Nothing prepared me for the influx of messages as the programme aired though! WOW, such wonderful feedback from family and friends and strangers to!  Herb definitely did capture the hearts of the viewers , so much so that he was trending on Twitter as #SuperHerb!

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I cried at both Teigan and Keano’s stories even though I knew they got through too but all in all I’m so glad we did it! If you missed it it’s on BBC iplayer!

A few people commented that the programme didn’t show how up and down his 9+ weeks in transplant were but the remit of the series was to highlight the decision making.  Most of that happens prior to transplant. I also believe that the programme was sensitive to the days when the children were really unwell. I don’t think it would have made good viewing to watch Herb suffering with skin GVHD. Keano was briefly shown in some pain but it was necessary to show the miracle of his turnaround in my opinion. I commend the BBC crew for the sensitive but compelling viewing that they have created and look forward (albeit armed with tissues) to the other episodes.

It has made me quite pensive this week. The programme stirs up a few memories and feelings. I have been thinking of the brave families that we had the privilege to meet during transplant. Wondering how those we are no longer in touch with, who sadly lost their precious children,  are coping. Some we were much closer to and still in touch with we know about. One family are expecting a new baby and we are thrilled for them, another sadly lost their angel after such a long battle and we haven’t stopped thinking of them. Some children are line free and as drug free as they will ever be (all BMT patients stay on one antibiotic for life)  and have fully working immune systems a year on. Others like us aren’t quite there yet. We are all moving forward though.

Herbie continues to be on a plethora of meds. Not much has changed in the last year apart from stopping the daily iv’s. He still has a Hickman Line and his Peg.  His weight has stabilised but Waseem wants him to gain weight so we will be seeing a dietician next week to see if we can supplement his diet at all. He is obsessed with drinking milk and is particularly partial to swigging it from the bottle…no manners at all!

At the JR for his three weekly immunoglobulin iv
At the JR for his three weekly immunoglobulin iv

School is now out for summer but Herb had a great last few weeks. He visited his new teacher and will return to his full class next year & do full time. He took part in  sports day which he loved but he did end it in tears because he couldn’t win any races.

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He also has started getting party invites again and enjoyed a party last week with his buddies.

So with excitement of the documentary still fresh in our minds and a visit to GOSH next week to talk to Waseem we are looking forward to the summer and hoping for a more positive 6 weeks than 2014!