Like a non-swimmer in a rough sea

T13… I’ll be glad to see the back of today. I woke at 4am to the sound of the fan whirring. I hadn’t put it on, Herbie can’t reach it so that meant one thing, Herbie had spiked and the nurse had put it on to cool him. That’s exactly what happened. My dreams of 24 hours fever free were dashed and to add insult to injury he was 39.5 again by 6am. I couldn’t believe it.

He was very groggy after such a high temperature and slept.
The doctor popped in and told me that the new antibiotics were clearly not doing anything as he was still spiking. I asked what would happen if he continued and she said usually a brain scan and lumbar puncture but that he was too well, alert and not vomiting. The day seemed to be starting badly! Rehka was our nurse again , one of Herbie’s favourites , and she came in to do the hair shaving for us. I secretly wanted to cry before she even started but I knew that due to all of the hair he had lost overnight, I had to encourage it.
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Rehka began and his face was so sad.

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Finally the deed was done. I was heartbroken even though I know from Dan’s and Hugo’s experiences that it will be back soon
, his hair really was so much part of his character.
Now he looks all huge eyes and the back of his head is flatter than it should be! He actually looks ill.
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Don’t be deceived by the picture above, after it was taken he went into the bathroom for his bath, sat on the edge of the toilet seat and cried. He cried for his hair, he made me cry too. Definitely a real low point of the day. I tried to jolly him along in the bath with games and jokes etc but it was clear that he was exhausted and wanted to go back to bed. I changed his bedding as it was so hairy and he snuggled into bed. Before we knew it Rehka was back to change the Hickman Line dressing, a weekly occurrence and to do a finger prick for drug levels in the blood. He wasn’t happy but clearly lacked the energy required for a full blown complaint.
We tucked him up in bed and he slept. He had a 250ml water bolus through his PEG again as his fluid intake is down but he actually began drinking more again today so he only needed the one.
I drank a lot of tea and played candy crush and watched Small sleep and willed him not to spike a temperature again. The post arrived. Apparently the post guy now just says “all for
Herbie
Baby Arthur was busy buying, wrapping, writing and posting and Herbie loved it, thanks Arthur, Mand, Issy & gem x

Thanks Arthur! (& Issy and Gem & Mand)
Thanks Arthur! (& Issy and Gem & Mand)

Thanks to the lovely Mrs J and family
Thanks to the lovely Mrs J and family

Mrs J sent parcels for Herbie, me and a small gift for Dan. The magazine was perfect Mrs J and kept me going on a long lonely afternoon.
Caroline & Mamood sent the above and I later heard that Ru & the girls all had something from them too. Thank you x
They also sent me yummy hand cream.
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Besties Lily & Sam sent lovely package and great gifts too. He was also thrilled with another letter from Hope.image
He says “Hope, I have been to Thomas Land too but I went at Christmas time. It is great there. I’m glad you had a good birthday. ”
I got a gift too from an unknown source! If this was you please tell me as I’d love to thank you personally!
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Herbie really didn’t do much all day but sleep. I collected his blood results and as I was told they had jumped down again.

HB 87
WCC 0.20
Neutrophils 0.08
Lymphocytes 0.02
Platelets 23

Platelets again tonight, blood transfusion probably by Sunday.
Will N’s and L’s ever get to zero?

Today really has been a pretty rotten one. We could have a long while to go in this rubbish phase but I hope we can pull through sooner. I had to get out for fresh air this evening. It’s very hard to stay in one room all day staring at your poor baby sleeping. Thankfully I drank so much tea I ran out of tea bags and had an excuse to pop out & get more!
Cobwebs cleared I returned back to my room. Herbie was hot, 37.9 and by the time night shift came on he was very hot. I was sad, for the umpteenth time.

Spent time on the phone and FaceTime to the kids before shutting down the lights and settling down to write this.image
The platelets are just going up. He’s still only 37 but can get hot!

I’m amazed that tomorrow we are two weeks post transplant. 14 is my lucky number so hoping for some better news or no temperatures.
I need to sleep…I have felt like a non-swimmer capsized in a rough sea today. I am so hopeful for a millpond and some armbands tomorrow xxx

7 thoughts on “Like a non-swimmer in a rough sea”

  1. It’s so tough 😦 We’re hoping and praying Herbie turns corner soon. James likes seeing the pictures of all Herbie’s presents! Paul and I find a quite moment each day to read your blog updates. We’re getting all sorts of hints and tips ready for when James has his BMT. We’re definitely sold on the idea of the peg into his stomach! Sending love and prayers to you, Herbie and your whole family.
    Penny and Paul

      1. It’s perfect – such a brilliantly useful resource for us. We know it’s going to be tough but we need to be prepared. Sometimes we cry when we read things…I shed a tear when Dan went home after three weeks! And I cried over Herbie’s hair….James has beautiful hair. Other things make me smile….like the fuss Herbie makes when he has a finger prick tests….James would make a similar fuss and draw concerned crowds of onlookers! They seem quite similar…both full of character, spirited and able to put up a good fight!

  2. I used to work with Charlie Edler, many moons ago. I have been following your blog via her Facebook page. Can I say, I admire you so much. I have tears in my eyes writing this because I am overwhelmed by my emotions for your little Herbie, the worry and the sadness you must feel, and for the incredible luckiness I feel to have a healthy 3-year old. What a brave little boy you have. He is so handsome. I wish him all the luck and successful medical science the world can offer. Please God, let him be well. Becky

  3. Wow Em…emotion poured from me reading your blog today, I can actually sense how this is impacting you all and cannot imagine how hard it is – I can imagine that today was a hard day – the hair thing, the shocking new look – yep! I so admire your strength in all of this, and of course the way in which your little man is handling it all…so inspirational…I actually think of him now when I’m having a hard moment during the day and gain strength from his experience, and your strength, and I feel grateful for so many things that I never used to when I consider what you are all going through. Thank you so much for sharing your journey through this blog, I think the effects and impact of this are far more profound than you may realize. I am thinking of you all often, sending positive vibes, love and hopeful thoughts for brighter days. Much love. Sonya. xx.

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