Fish 'n' chips...

...was on the menu for Friday teatime as the whole family met up at Jimmy's plus Natasha and Nicola, M's friends from Calder High. Everyone ate well, including Maddy - not bad considering she'd had a general anaesthetic ealrier in the day. She's kept up the eating far more easily on this cycle and that, combined with the NG tube used for night-time nutrition, means there is less immediate concern about her weight. Maddy hates the tube because it's quite uncomfortable - so she ends up stuffing bits of tissue around it to soften the tension on her nostril. This doesn't look too smart though - so she declined to be in a photo tonight - unlike Natasha and Nicola....



Meanwhile this blog has been running for just over a month and it has turned out to be a great success. We've had over 2500 page views in that time (the counter's right at the bottom of this page - click on the little bar graph icon for more detailed stats), and we're currently averaging over 40 unique visitors per day.
On good days it has been as high as 65 unique visitors - tending to coincide with ICT classes at Calder High.
Thanks to everyone for making this happen - keep reading and keep posting those comments.

More drama

Drama featured again in Maddy's life, but not in the medical sense this time.
On Thursday evening, the Calder High Junior Presentation evening took place at the HB Picture House. Maddy was in the programme to receive an award for drama, but in her absence, Alex accepted it on her behalf.
Meanwhile, at Jimmy's, Maddy was visited by friends from Year 10 and Calder Valley Youth Theatre. Her blood pressure's been more stable today, but is still under par.
She spent much of the day sleeping, to work off a headache resulting from Tuesday's IT procedure. She has another IT scheduled for Friday.

One small milestone today though, has been the last of the fourth cycle's chemo drugs, cytarabine.
She now has to ride the side effects before recovering to face, hopefully, her last cycle. She's unlikely to feel very well over the next few days, but will certainly brighten up for visitors.

OK, but tired

Maddy's done really well on this cycle compared with the previous two, but she's starting to feel the downside a bit now. Just as at the same point in the last cycle, Maddy's holding everyone's attention with some blood pressure tricks - but everyone's trying to get used to this as part of the natural rhythm of the chemo cycle. She's sleeping through a lot of it, although she did get into the dayroom for an hour or so to view this blog and email messages.
She's kept up with her eating far better in this cycle, mainly becasue her mouth is less affected this time round - although it's hit her hands instead.
She's being rather canny on the food front - as she latches on to all the sort of stuff her parents would normally resist, knowing that she'll get a green light to eat just about anything - 'Dairylea lunchables' being the latest example.
Most impressively though, she's still very spirited and looking forward to a whole load of visitors tomorrow and Friday.

Hydration

Hydration involves giving lots of fluids to a patient.
In chemotherapy it is used to flush out some of the toxic drugs used, such as methotrexate.
One of the benefits for Maddy in hitting her methotrexate target level yesterday is that she no longer has to recieve high levels of hydration. Whilst not uncomfortable in itself, it did mean that she had to get up every two hours - day and night - to visit the bathroom. (Getting out of bed and moving around when you're attached to a drip trolley is quite a logisitical operation).
She's sleeping better now, as a consequence.
In fact she slept quite a lot yesterday - in the morning becasue she was on no food or fluids as she waited for her IT (intrathecal) procedure . In the afternoon she was still drowsy as she recovered from the general anaesthetic.
Karen looked after Maddy for a few hours later in the day so that Julie could watch Bob (Maddys' brother) in his school play - well worth the effort all round.

Ahead of schedule

Maddy's continued to make great strides in dealing with her chemo, relative to the default protocol schedule.
She gained 5 days over the the 2nd cycle and a further 6 days on the 3rd cycle - that's 11 days ahead overall - can't be bad. Another encouraging sign emerged today with the result from her first blood test on this cycle to measure her Methotrexate level - she hit the target at this first attempt, as last time - just 4 days into the cycle.

Hands

Maddy has experienced her last 'new' drug on this cycle. It's called Cytarabine and it's administered very slowly over a continuous period of about 5 days. So far, there has not been much evidence of side effects...except for a couple of relatively minor things. Minor today perhaps, but they could become more significant over time perhaps. Her hands have become a bit sore and rather hot, especially at night. - she thought it might be to do with opening all those Coke bottles, but the Cytarabine is a far more likely candidate. It's treatable with creams however. The other effect is quite weird. A couple of times over the last 2 days she's asked for her fleece, complaining of feeling cold. Now just think about the weather we're (well most of us) enjoying....?!?!? The hospital aircon isn't that efficient.
Meanwhile she's enjoyed seeing plenty of visitors over the weekend - Julie & the boys both days, Wendy on Saturday, and three lots of schoolfriends plus a mum (Mary).
Alex visited on her own on Sunday morning - here's a pic, taken in the day room.



Julie's back on duty tonight (Sunday)) after a couple of nights off.

Professionals

As has already been said, it's really tough to have to deal with cancer, especially as a teenager when it's just not expected.
But, the sort of care received can make a big difference to the way the whole experience feels.
Maddy has come across an extensive range of health care staff over the last couple of months, including nurses, oncologists, radiologists, surgeons, social workers, education liaison workers, dieticians, psychologists, catering staff, porters and many more besides. Pretty well without exception, they are all exceptional people and all valued players in Maddy's 'team'.
Perhaps those on the front line are the ones who may be remembered most readily though, particularly when this episode is only a distant, but perhaps still vivid, memory in history.
It seemed really appropriate then, that as this idea occurred, the two people below happened to be on duty in the Teenage Cancer Unit at 07.40 on Sunday morning (when most readers were probably still tucked up in bed).


Judith and Gill (L & R respectively) have both looked after Maddy on numerous occasions and they epitomise the professionalism of Wards 10 & 10T at St James's.
They always take time to reassure and explain what's happening without wasting time (they're incredibly busy) and they are at the 'top of their game' in knowing just what they're doing. These are the sort of professionals that really do make a difference, for the better.