Sunny Sunday but through a window

T+2 today, two days post transplant. It’s funny how the actual days are merging and we forget what day it actually is!
So today was Sunday and it was sunny, absolutely gorgeous weather but we spent most of this sunny Sunday inside looking out on the lovely day. It was the common thread for discussions in the parent kitchen, everyone had a family or friends event they were missing; parties, barbecues or sessions in pub gardens.
Such is the lot of a BMT parent it seems. We had out lunch in Queens Square in the sunshine just to experience the day briefly.


Herbie woke late but in a great mood. He demanded “that song I like mummy, you know the one ‘How deep is your love?’ ” he started to sing! His nurse was Rehka and wanted to know what other songs he liked. “I’m guessing you like Justin Bieber or One Direction” she smiled. This was met with a deep frown from Herbie! “Yuk!” He said “I don’t like One Direction and who is Justin Bieber?” He then asked “Do you like Band of Horses and do you like The Kinks? I like their song Lola!” What a random 5 year old he is!

Dan came and we got to work on the bathing regime as the time off of iv was short. We weighed Herbie and he was 21.1kg which means he has gained about a kilo since we started this. This gain is bittersweet. We were told children stop eating and lose around 10% during transplant so the fact that he still eating like a horse is great but the reason we weigh twice a day is because the chemo Bulsulphan can clog up the liver and make children gain weight too.

I met a mum in the kitchen today whose son is T-4 meaning we are not the newbies here. She was asking how Herbie was and told me her son is stopping eating as he has sores in his throat and is on codeine for the aches and pains and is generally fed up. It made me realise that we have been relatively lucky so far.

We spent the day watching TV and playing games and doing puzzles. Herbie was in fine form, cheeky, hungry and generally happy.

Moshi memory game
Moshi memory game

Moshi puzzles
Moshi puzzles


Whilst the cat's away game!
Whilst the cat’s away game!

I had a call from the community nurse, Sarah, who had visited Rufus to change his dressings. She said the wounds were literally like two biro marks! Bruised but clean and healed.
Kitty seemed a little flat on FaceTime and said she wished we could all be home. Dan and I have started talking about when one of us might go home. On Tuesday we have been here two weeks, we always said we would both do the first three weeks together. This means either I go back at the weekend or he does. He needs to go back to work, being self-employed and having a child going through this really isn’t a good combination! Herbie already told me that I can’t go, what a dilemma when you know all of your children need you.

So the day passed uneventfully. Blood results are as follows (for my lovely friend Mrs A who loves a blood stat as much if not more than me x)

HB 100
WCC 1.77
Neutrophils 1.65
Lymphocytes 0.01
Platelets 314

So HB & Platelets still well within the parameters we want to keep them in. Lymphocytes pretty much non-existent, they are the cells that fight infection. White cell count dropping away as expected too as are the neutrophils. We were told today to expect them to continue to drop and stay low for a few weeks before they begin to show signs of recovery. Usually between 14-21 days post transplant.

This evening Herbie went to bed happy and was out like a light, about an hour ago they came to put up an iv and his sheets were all damp . Night sweats again? Ugh…his obs were all fine but it’s a reminder of what’s still lurking in his little body.
I am excited about tomorrow because my sister and Mrs A are coming to see me xx I can’t wait! Friendly faces with news from home and hopefully a lunch date! Dan has a day time date with the launderette but is off to see Hiss Golden Messenger play in the evening …we both need a little us time in preparation for the coming weeks.
T+3 tomorrow…bring it on!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s