Rollercoaster

The last 24 hours have been something of a rollercoaster.
Maddy appeared settled when she fell asleep late yesterday evening (Thursday). Julie was reassured to see that she was being hydrated, albeit just above maintenance levels.
However, in the morning Maddy was very weak and tired with low blood pressure causing some concern. Hydration was increased, but this didn't appear to have much impact as her BP remained stubbornly low. There was some consideration of ICU (Intensive Care), but around the time her dad arrived in hospital, in mid afternoon, this prospect receded as her BP recovered to near normal.
You, the reader, can decide if there is a connection between the arrival of dad with his quick wit and repartee, and Maddy's recovery, although Maddy and her mum are (curiously) adamant that it is entirely coincidental.
Maddy's BP is still being monitored regularly - it's possible that this may be a symptom of infection - she is neutropaenic (again !) and is receiving a prophylactic course of antibiotics and electrolytes (Magnesium, calcium & phosphates). This does mean that she will remain in hospital now until, at least Tuesday - quite possibly a lot longer.

Maddy had a bath this evening and will be fed by TPN (see earlier posts) again, starting tonight (Friday).
Beth P (one of the blog's top commenters) will try to visit along with one or two others on Sunday.

...and back to Jimmy's......again

The previous post was almost subtitiled.....(But for how long?)....but there's no point in tempting fate, is there?
Whatever...(as the teeenage generation say)....Maddy lasted just 4 hours at home.
It did gave Julie just a bit of time to spend with the boys, as she watched Robert & Bertie play cricket for an hour, at Old Town.
Maddy really enjoyed seeing some of her friends again, but she also found it very tiring. Just before going to bed at around 20.30, she was ill and 'lost' (threw up) her feeding tube. After the Monday night/Tuesday morning experience, there seemeed no option other than to return to hospital, for safety's sake.
Maddy finally got to sleep around midnight, back in the same bed she vacated earlier that day. As she slept, she was receiving fluids to stave off hydration and some of her medication.
Maddy's approaching the nadir of her third cycle, so it seems quite likely that she may stay in Jimmmy's for a while now, maybe 2 weeks or so, until she's received the drugs for her 4th chemo cycle.
However....as you're probably weary of hearing by now....it is really tricky to predict.
More later.....

Home.............again

Looking a lot better than on her last return home on Monday, Maddy came home at around 16.30 this afternoon. Now, over 3 hours later she still hasn't gone to bed or even had much of a doze. Instead she's sat in the living room watching the Wimbledon's Women's Semi-Final (Williams v Sharapova) with her friends Helen, Tom, Emma and Georgina.

Here's a pic of Maddy & Helen...



Loads of people have sent flowers, cards, cakes and gifts of various kinds.

So for all of you, here's today's flowers, courtesy of Calder High School, delivered to the hospital this morning....



Many thanks to all of you - far too many to mention.

One day at a time

Another day in hospital, as Maddy's still not well enough to come home.
She had her IT today, but is still receiving fluids to help her recover from yesterday's drama.
She's also starting to get a bit of a sore mouth - might sound familiar to those of you following this blog since near the beginning (see June 18).

A number of people are asking how / when they can next visit.
It's really hard to tell what's going to happen next - it's just got to happen one day at a time - we can't plan, even one day, in advance.
So for all of you, especially those who haven't seen Maddy recently - here's a picture of St James's hospital in Leeds:

Maddy's room is marked with the purple flower !

Dramatic stuff

Wow - what a day. Maddy was really quite unwell this morning.
This was due to a combination of her already weakened condition from the chemotherapy, not eating or even drinking for about 18 hours, a two hour drive into Leeds first thing this morning and the heat of the weather.
As she arrived at St James's just after 09.30, there was a bit of a drama as she collapsed on her way to the ward. Presumably hospital grounds are relatively safe places to have 'a bit of a turn', as there are usually plenty of medically trained staff around to assist. This was the case this morning although Julie was, understandably, very worried regardless. Fortunately, a passing ambulance whisked her round to the front of the hospital campus where she was admitted to A&E. She was attended to very promptly with oxygen and to stabilise her heartbeat and blood pressure before being taken on to the ward. Once there she was hydrated with subtantial quantities of saline solution to deal with the underlying problem......Maddy had become seriously dehydrated. By mid-afternoon her BP was rising toward normal again and she looked alert and much more animated than earlier.
The IT procedure has been postponed until (at least) tomorrow, but it's amazing how quickly someone can seem very seriously ill and then recover so impressively in just a few hours. By tea time, Maddy had eaten some jelly and a packet of McDonald's fries brought in at the request of some of the other teenagers in the room.
This last item would normally not be condoned by her parents, but in the current circumstances - 'anything goes' on the food front and so the disappearing French Fries were, in fact, a most welcome site. Maddy should also receive about 400 calories through her NG (nasal-gastro) tube overnight.
High drama then, but importantly, a much better end to the day compared to the start.
As Gill, one of the ward nurses said to Madeleine, "That was an impressive entrance - you certainly got our attention....".
Everyone's still hopeful that Maddy will get home (again !) later this week, but for now it's a case of one day at a time.
Watch this space for updates.

Back to Jimmy's - to stay for a bit

Maddy went back to Jimmy's at 7.30 this morning - not feeling too good.
Notionally,this was as a day patient for her IT (intrathecal), but she's been admitted back to the ward and will stay in for at least one or two nights to recover. Although she was really pleased to get home, Maddy was finding it difficult to feed and drink and so there was no real choice but for her to stay at the hospital.
Her IT has been postponed until tomorrow.
She may not be well enough for visitors for the next day or so.
If you were thinking of visiting, it's probably best to call or text her mum (Julie) on her mobile, first, on 0773 0921720.
Thanks to all those of you who have posted comments on the blog, mostly friends from school. Thanks folks, it's very encouraging for Maddy. Although she's not up to using the laptop at the moment, we can read the messages out to her and she's really chuffed that so many people are 'looking after'.

Home !

Maddy came home this afternoon with Julie and her grandparents, geting back to Hebden Bridge around 5pm.
She's very tired and went straight to bed, but she's also really pleased to be out of hospital.
Do get in touch with the family at home, if you're interested in visiting Maddy over the next few days.

Tomorrow, (Tuesday) she's back at Jimmy's as a day patient.

Methotrexate

This is another chemo drug included in Maddy's protocol that has to be carefully monitored to assess just how well the body is processing it. The methotrexate levels are measured through daily blood tests. Too high a result requires a patient to remain in hospital. On her last cycle, Maddy took 6 days to hit the target, but on this current cycle, she's got there in just 4 days.
Obviously, she's very pleased as this opens up the potential for her to get home, and it now seems probable that could happen on Monday or Tuesday (a bit earlier than expected). She's scheduled for an IT (intrathecal) on Tuesday at St J's, but only as a day patient.
Wendy visited today and entertained us - thanks for coming Wendy, you were a right laugh !

Sunday morning

This is the first blog written from hospital - so now you can work out where Chris is. Julie spent Saturday night at home with the boys and is coming into Leeds to watch Bob run at Carnegie, before coming on to St J's. Maddy says "Hi to everyone - I'm really looking forward to getting home (thanks Wendy!) some time later this week". Fair comment as she's been here almost a month now, with just a 2 day break in Hebden, so hardly surprising that she's fed up.
Daisy visited yesterday, not today as reported in yesterday's blog ! (if you can follow that). Wendy's due shortly. Karen & Maddy's grandparents (Chris's) are scheduled for Monday.
Sunday lunch is served so Maddy & Dad are off down the corridor for our nosebag now -yum!