100 days and beyond

Today is T+105

It’s been a week since I last updated. About an hour after the last blog was posted we were informed by the doctor that Herbie could go home after 24 hours observation without TAZ. This went down like a lead balloon with Herbie. Dr Ed, who was given the unpleasant task of passing on the information, knew what the reaction would be and asked me to go to the nurses station to talk to him out of Herbie’s earshot. Whilst we were chatting Herbie appeared by my side shouting “I’m going home you know , I’m not staying here!”
It took a long time to calm him down but he eventually he realised, one more sleep and he could go home.
That night I asked our nurse , Amy , if she could get our blood results completed in our shared care folder ready to go home in the morning. Later the doctor arrived with the folder, she wanted to ‘give me the heads up about the bloods.” It all sounded a little ominous.
This is what she was worrying about…
On arrival Herbie’s bloods were as follows
HB 11.8
WBC 4.67
Neutrophils 3.56
Lymphocytes 0.42
Platelets 81

Over the last few weeks he has had a lot of TAZ and this can drop his counts which we have seen. So after another 50+ hours of TAZ it wasn’t a surprise to see they had dropped again but it was a worry.

HB 10.5
WCC 1.73
Neutrophils 0.95
Lymphocytes 0.29
Platelets 72

The dr said that GOS and Prof Pollard were aware but happy for us to still go in the morning. I won’t lie to you, I was shocked to see how low everything was. It was not unlike the days in GOS in the early days after transplant. I hadn’t expected to see numbers that low again.
We agreed that another blood sample be sent in the morning before we left to see if the trend was continuing downwards.

T+99 we were ready to go home rather early! Herbie was dressed and packed up at 7am. The blood results came in and they were not what I had hoped.
HB 9.9
WCC 1.38
Neutrophils 0.61
Lymphocytes 0.29
Platelets 69

The neutrophils were now well under 1 and close to needing GCSF, something we hadn’t needed since early June. We returned home wondering how this would all pan out and hoping that by Tuesday, when the next bloods were due the trend would reverse.

Herbie settled back at home and Dan and I wondered how long we would get this time.
Things have settled down this past week and the bloods picked right back up on Tuesday as follows…
HB 11.5
WBC 4.74
Neutrophils 3.56
Lymphocytes 0.47
Platelets 81

Herbie still has a 1600ml fluid target but thankfully since returning home we have not needed water boluses over night and the pump has stayed well and truly in the cupboard (which is just where we like it! )
We have almost weaned the steroid and the MMF now so things are moving forward and despite how completely mad this roller coaster ride seems to us GOS say that are extremely pleased with his progress post BMT!

One day this week we were concerned that Herbie’s temperature might be rising again but his body seemed to control it going from 37.6 back down to 36.8 without the need for calpol or a call to the BMT on all reg.
He’s been bouncy and happy and just a little stir crazy, can’t wait to get him out and about!

So as the new school term approaches I greet it with mixed emotions. My first born Lily, so seriously ill last summer, starts secondary school with her twin sister. She is happy, healthy and a completely different girl to the one who suffered so much last year. Last year she returned to Year 6 with a cushingoid face, tiny frame, almost unrecognisable from who she is today. For that I am so so grateful.
This time last year I was starting to get excited about my new class, home visiting etc. They were a fabulous class, with so much promise. I hoped to be in school all year, unlike the year before, and was confident about that.
Herbie was starting schoolimage
He was an excited 4 year old boy who couldn’t wait to join his siblings at the local primary school. November the 15th 2013 was the last real day he attended. He’s done a few sessions since but literally a handful. He won’t return to school to rejoin his class mates in September and my class of 2013-14 have moved on to the next teacher and my new class will remain names on a list until Herbie is well enough for me to return. That makes both of us sad. However Herbie will get to see his lovely outreach teacher again which makes us happy!

I have so much hope for the future though, things are going in the right direction, we will keep going.
I received a lovely gift from a friend’s mum this week…couldn’t have been more apt…thank you

One thought on “100 days and beyond”

  1. We are still reading your blog and continue to send our positive thoughts to you! Tom and his brother Ed saw something while we were shopping that they thought might come in useful for Herbie, can I send it to you? Not sure how to go about it. X Kate

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