Lollies , laughter and superhero plans

T+6 … It’s crazy to think we are almost a week since transplant. Lots of people warned that it would seem long but right now it’s zooming past.

Herbie woke late and a bit dopey but he asked to get up almost immediately. It’s tough as he goes to sleep attached to two iv’s one on each lumen of his Hickman line and wakes up the same! Thankfully he is getting plenty of time during the day without iv now.
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With no more complaints if a sore mouth or tummy this morning we were tentatively hopeful for a good day. We were asked if we would chat on camera today about how things were going so far so once Herbie was busy with Helen and Rehka had changed his Hickman line dressing again we headed out to face the camera.

Once done we went to Starbucks for what is fast becoming our ritual elevenses and fresh air break.

On returning we learnt that the Friday consultant round had been shifted to Thursday this week so Catey returned with a radio mic and prepped us ready to film.

Herbie had yet more post today, in fact one of the ward doctors asked me if he had had a good birthday yesterday! He couldn’t believe it when I told him that it wasn’t actually his birthday!
He was thrilled with his gifts from Auntie Charlie’s friend Hazel and her family. Thank you
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He was amazed to learn that Deryn and her family read our blog every day and had sent him these goodies. Thank you George and Lauren, he loves what you sent!
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His best friends Lily & Sam’s Auntie Emma, Uncle Ollie and cousin Isobel sent a funny card that made him giggle and goodies that made him smile x
Thanks again to everyone xxxx
We have to rotate cards and pictures that are not laminated to avoid dust build up in the room and also so that walls/doors can be wiped down. All things that he has received so far are either on the wall or if they have been on the wall they are now in a scrapbook which will be a wonderful keepsake of the support for Herbie once he is home.

Paul Veys and two other doctors arrived for ward round. He said that really there wasn’t much to add from Tuesday. He wondered if Herbie would beat the ward record of taking 12 days to get to zero for neutrophils and lymphocytes? He said it was all going very well and that Herbie was doing very well in himself.
Herbie appears to go slightly mad when Paul Veys arrives, he still was asking him to “put them up and fight like a man” but he also kept beckoning him to come closer! I was slightly concerned that he might play fight with him!

The blood results arrived late afternoon and showed the trend was continuing…
HB 93
WCC 0.46
Neutrophils 0.40
Lymphocytes 0.03
Platelets 163
Everything is on track, platelets and lymphocytes are still above transfusion levels. Neutrophils and Lymphocytes still heading near to zero.

Herbie has been going on about ice lollies for days! He wanted a FAB or a fruit pastille lolly so when we went to Starbucks we picked up some lollies for the BMT freezer in Fox Ward. Herbs managed two mini fabs and a fruit pastille lolly this afternoon! He was so happy.

FAB
FAB
Fruit pastille lolly delight
Fruit pastille lolly delight

Then Dan and Herb’s settled down to some serious TV viewing whilst I had a quick walk out to post a letter. Before I left Dan was messing about with the remote controls on the bed whilst Herbie was on it, the laughter was infectious!
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I was thrilled to see the letter in my email inbox from the children’s school telling parents about Superhero day, I had received an email about it a while ago and was so touched by the kindness of the teachers & my children can’t wait!
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Oh and on my return from my walk I was greeted by this sight which I had to share!

Peas in a pod!
Peas in a pod!

The rest of the day was uneventful but it was lovely to FaceTime the others and hear about Ru’s superhero card from his class and teachers. He was thrilled! I wish I was with them, I miss them so much. It’s been almost a week since I’ve seen Rufus and 11 days since I have seen the girls.
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So tomorrow sees us a week past transplant and so far things are going well. It’s harder the longer we are here as we meet so many other parents, many with sad sad stories but also scary ones of transplant complications etc. it can be hard to detach yourselves from them and to remember that each child is different. Yesterday there was lots going on on the ward and all we knew was someone was very ill. We talked to that child’s mother in the kitchen today and the child is a year post transplant and is in due to complications. It really changes your mood and you need to remind yourself of what the BMT CNS Nikki said last week, every good day is one less bad one.

See you all tomorrow…T+7, can’t quite believe it!

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