Parcels, painting and positivity

T-3 arrived with a weary voice telling me he was hot from his bed. I looked across to see that he was still on an iv, I checked the time, 5.30am! I investigated the pump to see that cyclosporin had started as planned. Herbie’s hand didn’t feel hot and he soon turned over and was back in the land of nod. We managed to both sleep in until 8.30am which was great and much needed.
The routines of the day are now well rehearsed as we can officially say we have been at GOSH a week. Herbie was excited to see the nurse, Rehka again today, holding a letter with his name on it. His first bit of in patient post.

A letter from Floss
A letter from Floss

A card from Grandma & Grandpa’s dog Floss and a Freddo.
The morning passed quite quickly , full of iv’s as yesterday, Amikacin, Fludarabine (chemo) and the last dose of Bulsulphan (chemo), a plethora of oral meds , temperature taken, SATs & heart rate & blood pressure checks. We even had the Hickman Line dressing changed again. We read a book and even did a little painting!
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In between there was plenty of time for him to have fun banter with the nurses.

Dressing change again!
Dressing change again!

The teacher arrived again with an arm full of dinosaur books and Dan and I headed out for fresh air. We passed Dan’s new abode, The President Hotel. He claims he’s staying in the Nancy Reagan suite but I think it’s more likely he’s in the Bill Clinton love dungeon myself!
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On our return Helen , the hospital teacher, told me how lovely she thought Herbie was and how she guessed everyone thought the same. (Proud parent moment) she also said “He’s so polite” Apparently his class back home are doing dinosaurs so she was going to cover the same but when she asked him what he would like to learn about them he turned and said very honestly “nothing thank you” . Hehe!
As we passed by the nurse station on the way back we were handed 3 parcels that had also arrived for Herbie this morning.
Great excitement ensued as we came back into his room, his lunch of pizza, beans and chips was put on the back burner!

Treasure through the post
Treasure through the post
Fab new train book
Fab new train book
Moshi alert
Moshi alert

He was absolutely thrilled with his fabulous gifts and cards, thank you Nic, Kirstine & Ofelia xxxxxx
At 2pm Veronique, the play specialist, arrived and we left Herbie for an hour and spent time chilling out in one of the parent rooms. I got his blood results and saw that the HB & platelets remained good and the other counts were going down as suspected.
On Tuesday afternoon it is the consultant ward round. The film crew arrived with a radio mic and Paul Veys arrived in the room with another doctor. Herbie went into overdrive with the cheekiness! He demanded Paul Veys “put them up and fight like a man!” In more serious news he was very pleased with how the conditioning phase was going and how Herbie had managed the ATG and chemo saying it was text book! All music to our ears.

We enjoyed FaceTime with the other three and even a catch up with our lovely community nurses whilst Lily had her subgam at home. How would I get through this without the ipad and FaceTime I ask myself!

So we come to the end of T-3 and head into T-2 in a buoyant mood, yes of course there is a long way to go but we hope that with routine, positivity, the support of friends and family , the care and guidance of the team here at GOSH we can ride this huge wave safely (even if at times precariously) back to the beach!

Thank you xx
Thank you xx

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