We have lift off…after a few false starts!

Today was officially T-9 but we didn’t know whether transplant would actually still be on until the results of the NPA (I know I called it a snot test yesterday but I’m sorted with the lingo now!) were back and that was not due before around 4pm. So we had to get on with it and assume things would go ahead which mean Hickman line insertion and PICC removal this morning.

We left the patient hotel to head for Elephant Ward. This is the oncology & leukaemia ward but they are obviously used to Hickman lines and isolation & at that point Fox & Robin wards (BMT Wards) were full.

We got to our room at 8am and settled in to wait to be called to theatre

Elephant Ward Room 11
Elephant Ward Room 11

Elephant Ward Rm 11 bathroom
Elephant Ward Rm 11 bathroom

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Catey arrived from the film crew to film our thoughts about the NPA results etc and we waited and waited. Herbie was getting a bit annoyed about the whole nil by mouth thing and looked for ways to amuse himself but finally the call came. image

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We took him to the theatre which was near the Lagoon Restaurant, a different place to the main theatres he went to for the Peg insertion. We were both allowed in to be with him whilst he went to sleep. I actually hate watching this and in Oxford only knew parent can go into the anaesthetic room so I have a get out clause! Here at GOSH both parents are welcome and in this instance the theatre is where the anaesthetic was given so I went in. All it did was confirm that staying outside is better for me. I hate watching him go under. We sat, almost silently, in the Lagoon drinking tea and watching the clock toy with us as the minutes ticked by at an alarmingly slow rate! Finally we couldn’t wait any longer and so we returned back to the waiting room to await a call from our nurse. Thankfully the wait was short, just an hour after we left Herbie in theatre we were by his side in recovery . Line all inserted, PICC removed and much to Herbie’s disgust , a cannula insitu.

Herbie recovered from the general anaesthetic relatively quickly and was soon tucking in to food and drink!
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Then suddenly, the moment that we had waited for…NPA results.
It was a jaw dropping moment to be told it was all clear and we could go ahead with transplant as planned! We were shocked! Finally the time had come. We had mixed emotions but ultimately we were glad that we could move forward.

Another ward move, back to Robin Ward, room 2. Our home for the next 8 weeks!

Our temporary home
Our temporary home

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We gave Herbie some Children in Need moshi monsters , the first of many incentives.
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Dan left us at 10pm & Herbie was given his final meds of the day. It’s now half past twelve, I’m here in the dark of the isolation ward, Herbie’s in bed asleep…we start chemo tomorrow! 😳

13 thoughts on “We have lift off…after a few false starts!”

  1. Sending all out love and thoughts to you all and willing everything to go to plan.Such an amazingly family who will get through the toughest of times.Sending big hugs Leanne,Georgia & Annie xx

  2. Thinking of you all. Let’s hope the next few weeks whizz by and you can look back at this as a distant memory. Xx

  3. Hope today, the start of your next journey, went as well as can be expected. Such a brave boy. Thinking of you all x

  4. That’s good (I think!!!)….. 8 weeks in that room…… I hope it’s got Wi-Fi!!! to keep you both sane. Sending lots of love and positive thoughts x

    1. Yes we have wifi thankfully, I hear there is another letter at home for Herbie, should arrive here on Sunday x thank you. If you want to send directly here now it’s
      Herbie Taylor
      Robin Ward, Room 2
      Great Ormond Street Hospital for Children NHS Foundation Trust
      Great Ormond Street
      London
      WC1N 3JH
      If poss in double envelope as it will have to be opened prior to going into his room x
      Thank you for writing to him xxx

  5. Even though your writing is so descriptive, it is difficult to put oneself truly in your shoes except to know that you are probably feeling scared and anxious. Hopefully you are not feeling alone as I know many people are with you every step of the way – if not physically, then in their thoughts. I trust this brings you comfort. You and Dan are amazing parents and in the future will perhaps cherish the extra special moments you spent through all of this with your courageous Herbie. xxx

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