Medical Update

Kezia had her routine check-up today. Didn't see our consultant but neutrophils at 2.85 which is acceptable. Down from last time.

Seemingly, the next appointment will be at the new RMCH in the centre of Manchester - she said Pendlebury was already showing signs of packing out.

Off-Treatment

Today Kezia went off-treatment!

Next appointment, Deity-willing, just a check-up in six weeks time!

Medical Update - 28 days and counting

The end is in sight. Yesterday Kezia had her last Vincristine and is now on her last Dexamethasone. 28 days to go. Have just marked them up on my wall-calendar and will be counting them off

Nanda has been content this week – particularly as the hospital transport arrived early and they also got home early.

She even laughed at my reply to her enquiry about her suspicions of my sexual philandery (don't worry - I don't – it's just part of sexual culture here) – “yes, I'm having an affair with Mrs Hand and her five daughters” (a well-worn Ben Elton witticism).

As I won't be there for Off-Treatment Day, I must talk with Pete, Paula and Stefan about an Off-Treatment Party!

Will Kezia understand?

Medical Update

Routine. As we said, yesterday was the beginning of Maintenance Phase 4.

Vincristine injection. Counts back up so back on oral MTX and 6-MP. The Dreaded Dexamethasone over the next five days.

Jaime went to the hospital as well as they are in the half-term holidays. When I rang at 15:30, they were still at the hospital awaiting transport.

Nanda was thoroughly pissed off.

Where are we now ?

I don´t mean geographically (I´ll leave you to work that out - maintaining blog anonymity is not easy) but in terms of Kezia´s treatment and our disjuncted, dysfunctional family life.

Time to take stock.

Today will see Kezia´s first consultation of UKALL2003 Maintenance Phase 4. Only another three 3 month maintenance cycles to go - that takes us up to November.

Is there any light at the end of the tunnel?

Maybe a pin-prick (sorry for such an apt pun).

After off-treatment (OT) in November, our consultant John wants Kezia to say in the UK for 6 weekly check-ups for at least 18 months. May 2010. Kezia will be seven years old, Jaime will be ten years old. The medical profession will only consider Kezia cured after five tears of Event Free Survival.

The pin-prick becomes smaller.

There is a slight, as yet unexplored, possibility that Jaime and Kezia could continue their education in the UK at a private, charitable and means-tested boarding school of 400 years standing and reputed academic excellence - which would certainly be advantageous to their futures. However, an initial tentative probe of Nanda was not favourably received ... but she does have a tendency to jump off at the deep-end and then, after due consideration, change her mind.

When or will we ever become a physically united family again? Ever?

So far John has not precluded Kezia, Jaime, Nanda coming back over for a holiday during those first 18 months. It would certainly help.

Medical Update

Cancer routine.

Yesterday hospital - neutrophil count down due to last week's Dexamethasone so off medication. As stated before, this is actually good as if the counts were "good", it would mean the medication is not working.

Nanda and Kezia had to wait yonks for transport home so I imagine Nanda will chew me out today.

Medical Update

Kezia went to the hospital yesterday for Intrathecal Methotrexate. Seemingly no problems.

I've been at a bit of a loss the last couple of weeks about what to post. Writers' block? Cancer Routine?

I will attempt another post on Dexamethasone from a recent paper but it might take me a few days as I get my head around the science. I should react to the UK government's new Cancer Strategy ... but I wonder if 144 pages of printing is worth the theft of paper and toner from my employer ...

Kezia's first School Crisis

Nanda was phoned on her mobile this morning whilst she was in the middle of shopping to come and get Kezia from school.

I don’t know all the ins-and-outs of it but it seems she was well out-of-sorts. From what I can ascertain, she wasn’t very hungry at breakfast, and the first session at school involved dancing and she ended up very hungry ... and fractious. When she got home there was no fever but she ate an entire pizza!

As she only finished her Dexamethasone on Sunday, it is probably a side-effect of this.

Update: this her teacher's report "We phoned Nanda because Kezia did not seem her usual self. She wouldn't join in the dancing for the Christmas play which she usually loves! Also she was sweating quite a lot and fell asleep on my chair in amongst all the noise in the nursery! We felt it was best to call Nanda."

Medical Update

Kezia and Nanda back from the hospital. Counts good. John not worried by her cough and runny nose given the weather and and in/out of the cold/warm. No fever. Now 5 days of dreaded Dexamethasone so off school for the rest of the week.

Medical Update Illustrated

Back in Africa after two weeks with Kezia, Jaime and Nanda in the UK. I don’t know where to call home anymore – where our house is or where my family is. Another post.

During the two weeks in Rochdale, I went to the RMCH with Kezia twice. Her counts were up and so she was back on the IV-MTX and 6-MP and on Wednesday this week was back on the monthly 5 days of the dreaded Dexamethasone.

Below is a small illustrated narrative of a routine visit to the hospital, an amalgamation of the two visits.

First, let’s have a photo of Tom, the volunteer ambulance driver, who picks up in Rochdale and carts us over to the RMCH and back. The NHS would be poorer in all senses without people such as him.

Tom gave me some interesting and confusing “insights” into the inner-workings of the NHS – he is paid by one Trust, his ambulance control is another Trust, most of his work is carting children to and from the RMCH, another Trust, from other Trusts. That is just “managing” a volunteer!

He’s also doubtful about the new Manchester children’s hospital in central Manchester – what it will mean to transportation times. Instead of shooting around ring-roads and darting into a suburban site, he will have to deal with inner city congestion.

So when Kezia arrives, first stop is the pathology lab to have her finger pricked (i.e. a blood sample taken). The waiting room is a play room:

And good as gold she has her finger pricked:

… and gets five stickers for the effort.

Off we go to the clinic play room where we can indulge in a whole range of activities, here painting:

Up to clinic. First a physical exam – chest, mouth, lymph nodes, spleen etc.

Then this week we have a Vincristine injection via a Cannula (a needle into the vein, attached to a tube, into which the syringe fits). Kezia doesn’t complain at all, and the doctor and nurse say she is always a pleasure to treat given that it took three adults to hold the last child down and they are absolutely knackered.

Nanda admits that she has “bribed” Kezia – you”ll get a present if you don’t cry!

So to waiting in the corridor for Pharmacy to make up her drugs …

Medical Update

Kezia’s neutrophil count on Tuesday this week was 0.21 x 10 ⁹/litre so she is off the weekly oral Methotrexate (MTX) and daily Mercapturine (6-MP). This is probably due to the last batch of Dexamethasone. Next appointment is next week – the rhythm seems to be that if the neutrophil count is too low to take the MTX and 6-MP, then the next appointment is after a week to see if she can resume them. But if her counts are good, then she’ll have a two week respite until the next appointment.

She continues to do well and is very happy at school. She was envious of Jaime going to school in the last academic year when she did not, she was envious that Jaime started this school year a week before herself. And now I think she is envious that he gets to do a full-day and she only gets a half-day.

She has been a bit dissatisfied with the culinary arrangements at school. Cultural differences. Here we make one big pot per day that serves from lunch today until breakfast tomorrow. The number of people (principally children – even as a defacto bachelor I am providing lunch to two adults and two children plus me equals five), and our cooking technology - primarily one-pot cooking over a wood or charcoal fire, or a kerosene (paraffin for my UK readers) stove, means Kezia is used to a little rice and beans as Elevenses – some salad, an apple, a bottle of milk have led to her complaining she doesn’t get enough food! (That is not to say we don’t have a five-plate electric stove with oven in the UK and a five-burner gas stove with oven here – just a commentary on culinary culture).

And she must be right pissed-off that the Dexamethasone makes her incapable of school one week a month.

On Saturday I arrive back in the UK, on Sunday early, “home”. I wish I could delete the days between now and Saturday dawn when I leave, or at least fast-forward – we have not been together since April and all of us have increasingly been missing each other!

Medical Update

Kezia had a hospital visit yesterday. Vincristine injection and collecting prescriptions. Neutrophils well up at 1.7. Four days of Dexamethasone started this morning and it has already kicked in - when I phoned she was crying and didn't want to speak to me. So she'll be off school this week. Next appointment in two weeks so I guess John is happy.