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!

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One thought on “Lights, camera, action”

  1. Hi there,
    So lovely to hear that Herbie and you have been back in school. I thought the documentary did a great job of raising awareness and highlighting the very difficult decision making process. It is so amazing what can be done and the doctors seemed so lovely! You must be so proud of your family, and of yourself – such a tough thing to go through.
    I am now doing subcutaneous infusions for Tom at home, its great having the flexibility and less hospital visits.
    Have a great summer!
    Xx Kate

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