Why are you giving me something toxic?

Day T-8. A bright and early 6am start! Ugh! Anyone who knows me knows that 6am is Dan’s hour, I am usually sleeping soundly. Dan was in parent accommodation in the Italian Building though so when Small woke bright and early I had no choice but to follow suit! His nurse Amy arrived with morning meds and he had a mini melt down announcing that he hated the ward, hated Great a Ormond Street! This required serious Moshi bribery & so by 8am Herbie was the proud owner of a Moshling Zoo & I was wishing I had just purchased a shed load of Moshi blind bags for just such occasions!

Swag
Swag

At 7.30am Dan returned after a good nights sleep and we got ourselves a cup of tea and headed to the meeting room to talk to Nicky about BMT & sign the consent forms. Catey arrived to put the mic on me as they were going to film us and off we went. The consent ran through protocol, side effects and long term side effects. Nicky was up front but reassuring and we left there ready for breakfast and happy to be another day closer to going home! Herb was looked after by a student nurse and on our return we found her sitting on the floor surrounded by a sea of Moshi Monsters!
The morning passed quite uneventfully. Lots of the usual meds plus some new ones. Bloods taken from the Hickman Line which is fab. Dan and Herb played the ipad and I nipped out in the poring rain to grab some food.
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On my return we started to assemble the photo wall. It’s looking great. Are you featured? If you want to send a pic through the post to us and you get a chance to laminate it first that would be fab.
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Rules in the BMT ward are different to anywhere we have stayed in Oxford’s Children’s Hospital. First plus is tea is allowed on the ward! Whoop whoop! Second plus is free wifi, 24hr TV and no rules about when Dan has to leave. Due to high risk of infection all patients are in their own room and visitors are restricted. Only 3 of us can be in Herbs room, myself, Dan and my mum. Food preparation for BMT patients is very strict so we can’t really eat in the room. Herbs food is prepared in the BMT kitchen. I had to fill out the food menus for the next 12 days!
Menu

We had a stream of health professionals in and out, nurses, care assistants, hospital school teacher, volunteer called Veronique who made a a door hanger with him. A finger prick for Amikacin levels, which went very badly!
Later in the afternoon the first chemo drug arrived, it went in pretty uneventfully. Herbie overheard the nurse explaining that it was toxic. He looked at us , raised his eyebrows and asked “why are you giving me something toxic?” Mmmm…that was one question I wasn’t expecting!
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Once done Herb had his food and before we knew it he asleep.
Asleep
Finally he went to sleep and gave me time to write this…

12 thoughts on “Why are you giving me something toxic?”

  1. Emily, it sounds so overwhelming, and one of the worst things any parent has to take their child through. Thinking of you all every minute. xxxx

  2. Dear Herbie and family, we’re with you every step of your journey wishing you well. Our son (James age 6) also has a primary immune deficiency and will be having a bone marrow at GOSH sometime this year. Keep focussing on being well and healthy. We’ll be praying for you.
    Penny (James’s mum), Paul (James’s dad), James (age 6) and Sam (age 8)

    1. Penny I hope that this blog will help you a little and we can keep in contact. Does James have a family donor? Much love to you and yours and thank you for following us x

      1. James has an unrelated 9/10 donor. We’ve waited in the hope of getting a better match, but nothings come up. Still we’re hopeful that it’ll be ok and will do the job! Penny x

      2. Lily has a 9/10 unrelated donor too Penny. Wasim tells me they have successfully used 5/10! Who is your imms consultant at GOSH? Are you with Wasim? Love to you all Emily x

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