Hair today…gone tomorrow

T+12 arrived properly. We are almost two weeks post transplant and cells can start recovering anywhere from Day 14 according to the sacred BMT booklet!
I had known that the obs throughout the night had been good and so I finally relaxed (despite all of the noise from the deep clean of the room next door that went on until the early hours) and slept well. I woke to the sound of Herbie’s breathing. It was fast and I knew what that meant…a temperature. I tried to convince myself that I was wrong but I know the signs of him getting and having a fever all too well. I tiptoed out of bed to touch his face…very warm! I looked at the iv’s and the top machine had “iv paracetamol” on the label. When the nurse cam in she told me that at 6.30 he had spiked a 38.8 , a fifteen min paracetamol infusion was given and he was tested again…39! This is Herbie’s pattern all over he responds slowly to paracetamol.

So 18 hours after the last fever he had had another and my hopes that it was knocked on the head were again dashed. The doctors ordered a CT and abdominal ultrasound to try to get a heads up. The doctor did tell me that they were probably being overly cautious but it’s hard not to worry, he’s already on most of the drugs that they use to fight infections.

As the paracetamol kicked in he woke up and was a little brighter. His pillow was literally covered in hair!
He asked for the curtains to be drawn back and to sit in a chair with his iPad. He was clearly not himself though but that’s our Small, he fights every step of the way, he’s tough as old boots.

He thought about breakfast but wasn’t very interested. He tried drinking but he just not managing it. The nurses are convinced that it’s because his mouth is sore and maybe they are right but Herbie won’t admit pain readily and shakes his head when asked and says “nothing hurts!” (With a right old scowl on his face!)

The post cheered him up. One package from America no less, thanks Lisa & family, one from Amy & co and one from Gay. Thank you so much guys. We tested the glow in the dark stickers tonight Lisa and they are great! Amy, clever lady finding a Moshi toothbrush! He was thrilled! Gay, as ever you send the right things and I loved sitting and reading your card, tomorrow I may just nip to Costa dear friend, on you xxx

Finally it was time for the CT. Herbie has had a few of these, and it’s not normally a problem but today proved to be a different experience. For the first time in 3 weeks Herbie was allowed out of his room! He was eager to wear his new GOSH hoodie and for the first time in 3 weeks he put on shoes!
We joked about whether he was going to do a runner. He smiled and said “no but you can go to the cafe and get me stuff later”. He went in a lift to the CT room and was asked to wait in a side room whilst they cleaned the scanner. He sat on my lap and fell asleep.
The film crew arrived to film the CT.

On entering the CT room Herbie started to get upset about the contrast dye that goes in the Hickman line, he complained that it was too hot. With lots of coaxing and a few tears (for once not mine!) we got it done. Herbie was we too exhausted to walk back so a porter arrived with a trolley. Herbie was a little concerned on the journey back to Robin Ward!

Once back in his room he just slept and I lay on the bed talking to him and reading etc.
Then two people arrived with the mobile ultrasound trolley, it was a laugh watching them manoeuvre it through the small ante room. Once in I braced myself for the usual upset that an ultrasound brings but he just slept through it , barely batting an eyelid.

The rest do the day was literally temperature watch and hair loss watch!
The hair loss is thick and fast now but it wasn’t until this afternoon I could see it thinning. It’s literally everywhere, in eyes, mouth, on both beds. We decided that tomorrow it’s getting a buzz cut.


As the afternoon went on I was interviewed by Catey on camera again and then the platelets arrived. Herbie had been struggling a little today with nosebleeds so I guessed we would have platelets pretty soon. Herbie thinks platelets are apple juice!
Ever wondered if you can donate them? Read here to find out if you can.
During a BMT children need many platelet transfusions as these are often the last thing to recover.
Herbie is also blood type O- which can be universally given to anyone regardless of their blood group, however a person who is O- can only ever have O- products! So donors get out there, especially if you are O-!


Herbie slept through it all. I drank copious amounts of tea and chatted to the nurses when they came in to pass the time. Rehka & student nurse Lauren today. I also collected the blood results and was a little confused by them.

HB 91
WCC 0.31
Neutrophils 0.20
Lymphocytes 0.05
Platelets 13

So my confusion was that WCC, neutrophils & Lymphocytes had all risen. I was expecting some flatlining of neutrophils and lymphocytes at least. So why rising?
I asked Rehka who said it was normal and they still had to get to zero. It feels like we are going the wrong way! So we will have to wait until tomorrow and see what happens.

Herbie woke briefly asking for ready salted crisps and gingerbread men. I dutifully went to The Lagoon to buy some. On my return I opened the crisps, as directed by my VERY bossy son, and he held them for two seconds and fell asleep. An hour later he woke, took a crisp out, took a bite, chewed and swallowed it and fell asleep! Hilarious behaviour!

So we had a quiet evening. Herbie is on his second night of milk feeds through his PEG as he’s not really eating.
A new antibiotic/anti fungal drug called Meropenum , which Lily was on for ages, has been started this evening. It’s now midnight and Herbie’s temperature was just taken by the nurse Hayley. 36.5 again so perfect…it’s now 18 hours since the last spike…I don’t want to tempt fate but can we make it to 24?
Sweet (cold to tepid) dreams

6 thoughts on “Hair today…gone tomorrow”

  1. Hi Emily,
    Just wanted to let you know you’ve inspired me to register to give blood, I know I should have done it years ago but am donating for the first time this tues evening in witney! When I’m a bit scared (as I’m a real wuss) I will think of how brave you guys are!
    We are praying hard for you guys,
    Kirsty xxxxxxxxx

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