Stranger than fiction

Sadly, this will be our last post. Meg is ALL FIXED (apart from wobbly eyes) and we want her to have a few days of chilling (in this heat) and resting.  We have a couple of loose ends to tie up at Children’s this week and then we hope to change our flights so that we can return early. We have been reflecting on the whole experience and have identified some of the more surreal moments:

  • While waiting in the parents’ area during Meg’s surgery we chatted to another couple whose baby was having surgery. The baby’s father is a paediatrician – and a Wykehamist! He went to Winchester College so he and Josh compared notes about their experiences.
  • While still waiting we were treated to a harpist,  two clowns (Dr Maladjusted), a robot, a chaplain and Doris. Doris was our serenely calm updater.
  • While still, still waiting we had access to our own cafe, telephone, beds – you name it, we had it.
  • At Legal Seafoods (where we had dinner with PB) the table water was Hildon Water – all the way from Broughton, our next village!
  • Eating tea and buns at 3am at Au Bon Pain in Children’s during Meg’s first night in ICU.
  • Listening to the Archers and Test Match Special in ICU – wireless and mobiles allowed.
  • No hot doctors. At all. Anywhere. Except for PB. How disappointing is that?
  • A prescription for Meg’s epilepsy medicine was given to the pharmacy for dispensing. The cost? $550. Luckily, we had brought plenty with us from the UK.
  • Josh’s haircut taking 80 minutes.
  • The amount cars use their horns. One guy drove through a red light. The driver behind him leant on his horn because he was going through too – and the first car wasn’t going through fast enough.
  • A police presence at all road works. Sometimes there are five police in attendance. Not doing very much.
  • Spending hours watching the house opposite our B and B being moved. And piles of earth being shifted.
  • Eating a side of fries with a coffee – after dinner (Josh).
  • Browsing in bookshops until 11pm.

And the most amazing thing of all? That Meg is wonderfully well, due to the skill and care of all at Children’s and because none of us (and that includes you) ever once gave up hope.

Bless you all

Helen XX

PS Now go buy your ball tickets!

All of us at the Bertram Inn

  

Meg’s vital functions

Meg is still being monitored closely. Only now different functions are being tracked. She is wired up twice an hour and has the following functions measured:

Meg’s fun vital signs

These are entered into her medical notes so that her adjuvant therapies can be adjusted accordingly. Unfortunately medication for retail therapy is running low so we think this will increase next week. It is a fine line keeping these functions balanced. She has had a good dose of retail therapy today which has resulted in high happiness and low grumpiness, although this is increasing SHARPLY as I write. Sleepy functions need watching closely after such activity as this alleviates grumpy functions. As does putting on pyjamas.

Tomorrow we predict that there will be a dip in happy and retail, and grumpy and sleepy will be high – we have an early start and more tests at Children’s.

Meg says a big hello. She wishes it was hotter here because her bald patch on her head is cold. She says she now understands how Peter feels.

Love from all Stateside X

Meg and Superman – a comedy and a philosophy

A consulting room. Somewhere in Boston. Professor Black (dressed in doctor’s coat) is waiting for his next patient. Meg Jones enters stage right.

PB: Good morning, Meg.

MJ: Sorry we kept you up so late last night.

PB: That’s OK, Meg. You’re quite the most beautiful patient we have ever had. How are you feeling?

MJ: Fine. I still have my retail therapy lobe don’t I? It seems to be working very well.

PB: We always try to preserve that, particularly in young ladies who bring their mothers to Boston.

MJ: And my pyjama wearing lobe?

PB: I am sorry. That was too fundamental so we couldn’t do anything about that. So you will still need to wear your pyjamas during the day and will need regular scans. But we have managed to remove your tumour and don’t think you will need further therapy, except of the retail kind.

MJ: Would that be a tumour with a ‘u’ or without?

PB: Oh definitely with. We have successfully removed it all, even the ‘u’.

MJ: Thank you. You’re my superman.

PB closes the file and smiles broadly. MJ exits stage left. Lights dim.

Meg and Prof Black

Everything looks a little bit wide

Meg inhabits a new world where we all look wide and flat. Not sure about the wide bit; don’t mind the flat. It has this effect on her hair:

Meg’s wide hair

This new world also involves Upper Crust pizzas (wide and flat) and Vera Wang dresses (not wide but flat). She is getting used to this new world and her eyes are not troubling her quite so much, but crossing American roads are a bit of an issue. This isn’t a problem for me though because I have discovered that if you are knocked down on a crossing then it is an automatic $1 mill payout. Wouldn’t that look good in the charity’s account! I’m working on it . . .

This afternoon’s agenda for Meg is sleeping in her wide and flat bed and then tea and wide and flat cookies before we venture out this evening for dinner with Prof Black (not wide and flat, but normal).

Tomorrow and Friday we are back at Children’s for follow up and tests. We’ll keep you updated with our wide and flat progress!

Helen X

Post op day 4

Hello everyone!

What have we done today (and it’s only lunchtime)? Firstly, we didn’t get up between 4am and 5am to walk to the hospital and we didn’t get our security badges renewed and we didn’t visit ‘au bon pain’ for sticky buns for breakfast (shame). We did all have a lie in and had our first breakfast at the B&B since we arrived last Monday. Meg has had a bath (too much information), and eaten fresh fruit, porridge (sorry, hot oatmeal), yoghurt and granola, has dressed (unusual – she always wears pyjamas during the day when she can), has been for a walk (a little one) and she is now playing draughts with Josh on the deck, which is well shaded and not too bright. Sleep is on the agenda for this afternoon (for Peter, Josh and I) because we can’t keep up with Meg.

Meg with Catherine’s flowers

Meg says (she can’t read or really look at things at the moment) to let you know that she has put up all your cards in her room and her flowers from Catherine are funky and fab. She loves us reading your comments and emails to her so keep them coming. She’s not envious of all her friends at uni because they will be feeling worse than her today after their post exam parties. She says sorry for not being able to send personal emails but it hurts her eyes looking at things and her sight is a bit gappy. And of course, lots of love and thanks to you all.

I am going to attempt to improve on PB’s hairstyle this afternoon – it is a bit like an inverse mohican: instead of a strip left over her head it is a strip removed. So not much happening. Dull and boring is good right now!

Helen XX

Post op day 3

Howdy all!

Meg thankfully has had another incredibly boring night in ICU and it has been declared by PB that she is far too healthy to be here. So today she will achieve a first – she will be the first patient to be discharged from ICU to ‘home’. It’s time we left anyway – Childrens is running on emergency power today (did you feel the ‘power bump’ at 5am as the power was switched to generators?) so Au Bon Pain is closed. No sticky buns today then.

Meg is waiting for her breakfast (which she is complaining is late) but she has some tea from dunkin donuts to shut her up. ET finger still glowing well and still one IV to go. And if you want to know her vital functions, here they are . . .

Meg’s fan club is superb. You have caused much merriment with the nursing staff and have kept us going – thank you!

Helen

Meg’s vital signs

Up and about

Much to our amazement Meg is continuing to recover really quickly. This afternoon we went for a little walk down the corridor and then for a trip in the chair down to the beautiful hospital garden. The Prouty Garden is a beautiful oasis of green amongst the hospital buildings and a perfect spot for a bit of lunch in the open air. Here’s some pics to whet your appetite for our lovely little lady :o)

Meg Helen and Peter in the Prouty Garden

She’s having a nap now but will dictate a little message for you all later…

Meg and Josh in the Prouty Garden

Lots of love to everyone back home x

Post op day 2

Life is wonderfully boring! Meg is still in ICU, looking as gorgeous as ever, and is very relieved to know that Prof Black actually found a brain inside her head. She is only still in ICU because we are waiting for a room to become available. And if it doesn’t then she’ll stay here until she is discharged, which may be over the weekend.

She has one IV left which is administering steriods to keep her brain swelling down. It is really this which is stopping her going shopping. Once she is no longer tied to her bed then we’ll take her to the huge lobby to Au Bon Pain for sticky buns (lots of those here) and to the play centre, where the clowns are. She was grumpy with her IVs yesterday so we knew she is well on with her recovery.

She is sleeping loads which gives us some p and q. Josh stayed with her last night so Peter and I could catch up on our zzzzzzzs. Her vision is not brilliant in her left eye but this will improve over the next few weeks, once everything settles down.  

Meg will dictate again later, once her chocolate pancakes and hot oatmeal have been slept off.

Helen x

A little message from Meg

Dictated by Meg:

What a relief! My first memory after waking up was Prof Black telling me he got it all out. Can’t say I’m feeling marvelous, but it’s so nice to know I can only get better. Still in intensive care because there aren’t any free beds at the moment. Still very wired up, but managed to get up today and had a little sponge bath. The nurses and doctors are all very lovely. Yesterday I was busy giggling at the questions the doctors asked me and gave everyone a Royal wave as I left the holding area. Apparently I continued chatting all the way down to surgery. Got to love drugs!

Thank you for all your messages that keep coming through. Although I can’t look at the screen Josh keeps reading them out to me. Love to you all x x x

 P.S. Well done to my girls back at Warwick for finishing their finals! x

Meg - intensive care

Success!

Wow.. what a day! I can’t believe we’ve been in Boston for barely 48 hours and so much has happened.

Today really was a big long wait, but it was worth it. Meg was in surgery for 8 hours, and emerged soon after in intensive care with a funky hairstyle! (Neurosurgeons aren’t noted for their hairstyling but even Prof Black was pleased with his handiwork!)

It was a huge relief to hear from Prof Black and his team that everything went smoothly. But it was just magic to see a sleepy Meg in intensive care. She talked to us and within a few hours was looking her normal self. First thing she was allowed were a few ice cubes to sooth her throat and she really liked them – you should have seen her eyes light up when she was allowed some cold water! Tomorrow she can have breakfast and she’ll move to the ward. She’s such a star she’ll be better in no time :o)

She’s sleeping now and Helen and Peter are staying with her tonight. Thank you all so much for all your comments and emails.  You’ve really helped keep us going (and given us something to distract us while we were waiting!) and I know Meg is really touched by your kind words.

Meg has made it!

Mission status (active)

15.00 hours - somewhere near the front.
Operation nearing completion.
 
Latest intelligence report suggests the enemy has been routed.
Commander in Chief Prof Black is leading a final sweep of the area.
Meg 'lovely' Jones is stable.
Next update at 16.00 hours.
 
Over.

Mission status (active)

13.30 hours - somewhere near the front
Tally ho, lads. Terrain is mapped.
 
We've gone over the top and are looking the enemy in the eye.
Key operative comfortable. Current tactics working well.
Counter moves not needed at the time of this report.
Next update 14.45 hours.
 
Over.

Mission status (active)

12.40 hours - somewhere near the front.
Mission to resect tumour commenced at 0800hrs and is well underway.
Key operative Meg 'lovely' Jones working very hard under (warm) cover.
Commander in Chief Prof Black is in control.
We are completely outnumbered by allied forces in scrubs!
Next status update at 13.15 hours.
 
Over.
 
P.S. It's D-Day!

Hello from Boston!

Hello everyone!

Thank you all so much for my messages, it really makes a difference to know that everyone is sending lovely thoughts to us all across the pond!

Had pre-ops stuff today. It all went fine and they all seem very nice. There was a film about a pig to watch in the waiting room so it wasn’t too boring… We had time to go to the Isabella Stewart Gardner museum afterwards and now just sitting in the sun waiting for my MRI scans which are at 3.45pm.

I must say the biggest THANK YOU to everyone (especially Josh) for my good luck book! It’s amazing and was a complete surprise. I can’t believe how good you all are at keeping secrets!! There were many happy tears (from us all) when I opened it and it’s not left my side. Thank you x x x

Well, I don’t want to bore you so I’ll go, but next time I write on here I’LL BE ALL FIXED!!!

Lots and lots of love to you all, Meg x x

Children’s - entrance

Hi y’all

They let us in!! OK, so the immigration IT system had crashed as we landed (please don’t skim read this otherwise you’ll misunderstand what I have written) but we didn’t have long to wait and so we were safely tucked up at the Bertram Inn by 2.30pm.  Meg is asleep right now but she has had a busy weekend being the media star for Meridian, leaving uni and then leaving home for Boston.

You know everything is bigger in America? Well, even the rain is bigger. This was not torrential rain when we arrived but I truly thought the end of the world had arrived. Even the taxi drivers were refusing to leave their cabs to load our luggage. Or maybe that’s what they always do . . .

And so tomorrow is Day 1 at Children’s. We’ll know far more after tomorrow. We do know that one night in ICU, followed by five nights is outlined, but we think this is the extreme. Chances are Meg will be out by Sunday and ready to do the Hopper Exhibition at the Museum of Arts. Or maybe not . . .

 Keep your comments/gossip/news coming. They are a much needed voice from home and are very significant in Meg’s life (and ours).

 Thank y’all

 Helen X (big American kiss)

Welcome to our new blog!

Ooo! Look at the clever blog thingy!

We hope to have lots of visitors to this site and we want you to leave your comments. Your thoughts and good wishes will be an essential part of Meg’s recovery, particularly as she will be so far away from home.

We leave at 6am on June 4th, arriving in Boston at 1pm – in time to find a decent bookshop and a bar or two in Brookline, prior to Meg being admitted as a day patient to Children’s early on June 5 for a very full day of pre-op tests and brain scans.

Then June 6th will feel even longer. This is the day of Meg’s surgery. We know she will be in very safe hands (and so will we!) and as soon as we have any news we’ll post it here for you to read.

Watch this space!