We're in Bristol!
:: Whilst in Bristol.................
 

Monday 8th May

Today's the day! Sue & Dave up 7am - Joe struggled up at 7.30! Saw the girls off to school - Ellie distraught, Jess upset but very brave!

Left home 9.30am - traffic very heavy Hatfield to Slough - Joe amused all the way either on his laptop or PSP! Arrived in Bristol about 1pm. Offered drinks as we arrived.

Had our 'big' meeting on level 6 with B.M.T. Consultant Jackie Cornish at 2.30pm - finished 4.45pm!  Nurse on Day Beds gave us itenery for the rest of the week. 

Went & found what was to be our accomodation whilst in Bristol. All we had been told previously was a 'hostel' called Sam's House- that's all we knew.

Near the top of a very steep hill we found what used to be the Childrens Hospital, now used as Sam's House. Opened in October 2002 by Gary Lineker - a large, spacious building with 16 ensuite bedrooms, 3 communial kitchens - sub-divided for use by separate rooms,  3 lounges, a Gym (Oh Yes!), a playroom, poole table, table tennis table, tween room - 9-12 yrs, teen room - over 12's, a laundry room & a garden with children's play equipment - WOW! All really, really clean, well equiped & fantastic. It's like top class self-catering holiday accomodation - seagulls thrown in too!

Found a lovely fish & chip shop for tea then went out & did a big food shop. Shower & bed.

Tuesday 9th May

A busy day ahead - alarm set for 6.30am. Joe cannot eat today after 7.30am today (so bacon & egg sarnie for brekkie) & no clear fluids after 10.30am. Bone Marrow Harvest (BMH) due sometime this afternoon & as Joe is the eldest of those due for harvest, he will be last to have the op.

Due for dental check up in a different building but have to collect notes from Bristol Children's Hospital (BCH) first. They are on level 7 (Top floor & Bone Marrow Transplant Unit) & we have made a pact to use the stairs whilst we are able. Ground floor on level 2 so up 5 levels - 28 steps to each flight + 2 odd = 142 steps up! 

Booked in at dental hospital for 8.45am - they have no record of our appointment - further enquiries reveal our appointment is Thursday (our nurse told us wrong) - so we thought 'Good Start!!!' Back to BCH, level 6, for chat with Dr Keith & to sign consent forms for Chemo, Radiotherapy (R/T) & BMH. Off to R/T, level 5, for body measurements & small test dose - Joe flabbergasted at what he was supposed to squeeze into (a string-like stocking) to hold the devices that measure the amount of R/T he is given.

Back to level 6, our nurse Helen took us to Bristol Royal Infirmary (BRI) where Joe was to have his Lung Function tests - took about 3\4 hr - all OK. Back to BCH, level 6 for admission on to the ward for BMH - now about 1pm. Whilst we were waiting Sue & Joe watched 'Fireman Sam!' - called Joe for op. at 2.45pm - in theatre for 3pm - out by 4pm - we have to wait till tomorrow to see if they were able to do a 'good harvest'. Although Joe came round OK, he slept alot afterwards. As he hasn't eaten anything before day beds closed, they moved him up to  the ward on level 7. Joe need to have a full blood count (FBC) done at 8pm & we will have to await results before they are able to discharge us in case he needs any top-ups - blood transfusions etc. S & D looked round the isolation unit. Received FBC at 9.30pm - all ok - taxi back to Sam's - cuppa & bed. All shattered physically & emotionally.

Wednesday 10th May

A day to ourselves - a lovely sunny day too! Sat out in the garden - soaked up some rays & had a sleep! Went for a walk but Joe's back feeling sore. Saw one of the nurses in town who left Addenbrooks for a job in BCH! Small world.......

Joe managed to use the dial-up for his laptop - we're away now!! Tried out the Gym, then bed 10ish. 

Thursday 11th May

Due dental hospital 9am but first up to collect Joe's notes - level 7, 142 steps...........Dental check all OK - phew!!

Due back on level 7 for booking into the unit - FBC, paperwork etc etc. D,S & J looked round the isolation unit again & were able to choose & reserve Joe's room - room 1 tucked away in then corner away from the noisy nurses station - overlooks houses, the city & for miles you can see green fields!

Went out exploring the area to Durdham Down near the suspension bridge, had a sunbathe & ice cream! Chilled in the evening.

Friday 12th May - Day -7

Due on level 7 for 10am for 'Conditioning' - a process to prepare the body for BMT starting today with more chemo. Again offered drinks (this is part of their service - drinks of anything & biscuits to patients & relatives whenever they like - just buzz a nurse & they'll make fresh for you!)

Dave has mastered the Rubik's cube - unaided & without his notes!!!!!

Lots of bloods taken. Dr Keith wants Joe to have a chest x-ray before chemo starts - 12pm still waiting for x-ray, they are a bit busy! 2pm went for x-ray.

Came back up in the lift stopping at every floor just to listen to the different phrases. (There is one lift that says different things on every floor in the voice of Wallace & Gromit; such as - doors closing - mind your paws lad; going up - hold on to your trousers; level 4 -  the yellow floor - yellow - the colour of cheese!! - love it!!)

Asked for results of BMH - they should be in the region of 2 million but Joe's have come back with 4 million!!!!! OMG - what a star!!!!!!!!!!

Blood results came through by 3pm - now all medications can start - Joe feeling OK, mood OK - doing fab!!!

Day 1 of campath over 8 hrs (to suppress immune system)

 

 

Saturday 13th May - Day -6

Day 2 of campath over 4 hrs + cyclophosphamide (cyto-toxic) + mesna (cover for cyclo).

All fluids in & out to be measured - holding too much so given meds to wee more (frusamide) now going every 1/4 hr!

Dave, Joe & 2 male nurses watching footie - Sue meandered round the shops - not in the mood to look or buy really.............

Started thinking about 'THE BALL' - spoke to Jess, Ellie, Mandy & Lesley - we all ended up crying!!Opps!! Dave watched 'Scream' with Joe - Sue went to the gym to take her mind off EVERYTHING - very mixed emotions about everything tonight............

Sunday 14th May - Day -5

Very disturbed night - Joe started on hydration 10am yesterday to keep his kidneys / liver flushed out from all medications & toxins. Joe looks so well in himself today - body weight good but tired, very sharp with us, not hungry but looking so fed up & low. No good trying to make conversation as he is just not interested.

Spoke about the ball to all family & friends - soooooooooo can't wait to see the pictures & video! Jess & Ellie couldn't stop telling us about the ball - they were so excited & pleased they had been there to represent us - Ellie very pleased with her self for the speech!! Where does she get her confidence?!! All enjoyed looking at the pictures sent via email - cheered us all!

Sue asked about all the new medications - the whys & what fors - trying to learn a whole new load of medicine!!

 

Monday 15th May - Day -4

Dave to hospital for 9.30am - Sue back to Sam's. Joe & Dave back by 12pm. At least we can all sleep at Sam's now till Friday - (Day 0 - BMT day!) Joe slept in the afternoon - Sue wrote loads of letters. Went for a small walk in the evening. None of us could settle all night.

Tuesday 16th May - Day -3

TBI (Total Body Irradiation) starts today. Have to be up on level 7 for bloods at 8.45am. Joe woke OK but now appears solumn & anxious.

Went to Radiotherapy Dept for 1st dose - took 20 minutes. (I will tell you more about this if Joe allows). Joe feeling a bit yucky by the afternoon & had a nap. Back to R/T for more TBI at 4pm. More anti-sickness up on level 7 - looking & feeling much better.

JFP came to visit & stayed for tea. Joe sick but felt better for it. Slept quite well although still feeling yuck.

Joe received an autograph book through the post from his Auntie Dianne - she had taken it to 'The Ball' & people had signed it - it was a really lovely thought & we all enjoyed looking at it. 

Wednesday 17th May - Day -2

Today we have to start Joe's 'clean diet' & continue for approx. 3 months. No fruit, nuts, seafood, soft cheeses, anything raw or fresh fruit & veg - risk of fungal infection.

More anti-sickness pre-TBI & some other meds changed due to tender tummy. Went for TBI then back for a light breakfast - Joe feeling better for eating. More TBI in afternoon.

Enjoyed looking at photos of the ball - either sent to us or on website - really lifted us all. Told Joe that Jess & Ellie were coming down tomorrow - although in good spirits today, this lifted him even more. 

Joe on MSN, Dave watching footie, Sue gym.

Thursday 18th May - Day -1

All up at 7am - texted Ellie, they were already on their way!

Level 7 for anti-sickness then TBI 9.30am. Today is day 1 of 'Cyclosporin' - an anti-rejection drug to help reduce the risk of Joe rejecting the new BMT - given twice a day - takes 1 hr to infuse.

Sue met Jess, Ellie, Mandy & Clare at BCH. Joe still not quite finished so all up to Sam's. Joe really pleased to see his sisters & vice versa.

When we first came to Sam's House, the house manager, Corrine, gave Joe 3 Easter Eggs - 1 large Rolo egg, 1 large smarties egg & 1 small buttons egg - to share with his sisters. On their arrival, Joe gave Jess & Ellie the large eggs & kept the smallest one for himself!!!!  Need I say more..............

Girls left around 6.30pm - everyone was sad..................   

FRIDAY 19TH MAY 2006 - DAY 0 - TRANSPLANT DAY!!!

TBI etc as normal. Sue stayed at Sam's getting everything up to date. Small sleep then Joe wanted to go out for a walk so we went to a lovely park just round the back of Sam's.

Last TBI then off for a bath before going into our isolation bay for the BMT.

Joe given puriton & pethedine as cover - feeling quite sleepy. Bag no 1 of 3 (1315mls in total) came in at 6.55pm & by 7.02pm the BM was infusing - they hope to get all 3 bags in by 12midnight! Sue texted family & friends to say that it had started. (Feeling slightly nervous but also relief/apprehension/excitement - this is what we have been aming for for the last 4+ months!) Obs taken every 15 mins. 2nd bag went up 8.45pm - Joe still dozing. 9pm Joe ordered his meal - Yorkshires, sausage, mash & gravy. Our nurse (Kylie) came & asked us if we would like something to eat so we had the same as Joe + veg - tasty! Joe still hungry so had another 4 yorkshires & 1 sausage!

10pm Joe started to come up in a very aggressive bumpy rash in all his warm places & creases - Dr thought it may be reaction to anti-coagulant in BM - given more puriton + dex - rash subsided. Dave left about 11pm. Bags so full of BM that the pump kept bleeping 'downstream pressure'! After all line flushes then whole process was completed by 12.15am on Saturday 20th May. A total of 1289mls went through. Cyclosporin up for 1 hr then Joe can be left in peace - till 2am obs!

Benj - the nurse that actually did the transplant, told us they do transplants for ages 2wks - 65yrs - all individually tailored so all totally different.

The weather was absolutely pouring ALL night!!!

 

Saturday 20th May - Day +1

Not too bad a night - Joe up 3 times. Joe ordered cornflakes & cold blue (full fat) milk - twice! - then 2 x slices of toast! Feeling & looking OK.

Soup & bread for lunch then on laptop most of the afternoon. Turkey slices, yorkshires, waffles, sweetcorn & gravy for tea, followed by ice cream.

Dave & Joe watched a film in the evening - bed 11.15pm

 

Sunday 21st May - Day +2

Joe up twice in the night - otherwise a fairly good sleep. Woke at 8.30am - starving! Ordered 2 boxes of cornflakes & cold blue milk + 2 slices toast.

Rash appearing on 1 arm & leg - given puriton & cyclosporin on hold till rash subsided.

Dave left for home (Hitchin) at 4.30pm as everything going OK with no apparant probs. Sue back to be with Joe - Joe happy on MSN  Joe suddenly fancied 'Kettle Chips' - 7.10pm on a Sunday evening - Sue went out walking in search of the said items - eventually found a 'late shop' which sold then - back to Joe who was happy they'd been purchased  Joe's mouth getting sore - waited an hour for his dinner - frustrated - left most of it but enjoyed the kettle chips instead.

Settling down at 9pm to watch 'The Booze Cruise III' - love it!!

All going a bit too smoothly...................................

 

Monday 22nd May - Day 3

Both hardly slept - Sue left Joe sleeping  - showered & back for 10am. All Joe fancied to eat was tinned peaches - really sore mouth. Joe didn't want to do his mouthcare which was really upsetting as his mucositis was getting worse - feeling yuck & irritable which upset us both. Sick at 6pm-totally out of the blue - due to his tongue & mouth swollen & making him gag. Ate his tea ok, watched TV - bed 10pm.

 

Tuesday 23rd May - Day 4

Joe had a very restless night. Met the secondary teacher. Joe very, very tired - sick before lunch - mouth very, very swollen & sore. Mucositis definately set in - worse it's ever been - reading the leaflet on mouthcare it's probably due to the combination of chemo & radiotherapy. Sue wrote letters in the afternoon whilst Joe slept. Joe had sore/ tight shoulders & suggested a massage from Jax may help (one of the nurses does massage on the ward & at Sam's to patients & parents - when suggested last week, Joe would not even consider it & was cross with me for doing so!) Managed to eat lunch & tea. Watched Austin Powers in the evening.

* Received a text from Clare, Matt's mum - he has gone into Addenbrooks today for his BMH & told of headaches/blurred vision he has started to get. They are to stay in to do more tests & results will be available to them on Friday - possible relapse but unbearable to imagine.....................*

 

Wednesday 24th May - Day 5

Another very restless night - mucositis so very bad now - in terrible, terrible pain.  Codine had often been a good anaylgesic for Joe in the past  - couldn't swallow so tried it crushed - YUCK!!! Given paracetamol - took edge off but still in alot of pain. Very, very upset - Sue sat up with him at 6am - Joe dozing on & off - waiting for codine to be written up I.V. - eventually, at 9am, a line was put up  - hopefully he'll start to feel better now. Jax came in at 10am to offer Joe a massage - he was in so much pain he agreed - & LOVED IT!!! Joe asked when she will be back on the ward again as she made his shoulders & back feel so much better.  Everyday since, Joe has said 'when Jax comes next time I'll get her to massage me again!!' Sue to Sam's whilst this was going on - then had her massage - Aaaahhhhhh........... . On Sue's return Joe had been put on a Morphine infusion as he was feeling so, so poorly. Very upset & cross that he couldn't eat - can't even swallow soup. Fancied some pineapple but that went back barely touched. Sue went out & bought Joe some more tinned peaches - this is all he fancies at the moment - Joe so hungry & had some of these for tea. Sue upset at seeing Joe in so much pain but feeling so helpless. Pain team came at 9.30pm & gave a P.C.A.  (patient controlled analygesic) which he can press every 5 minutes when he feels the need for more pain relief & upped his 'background' morphine to help him get through the night more comfortably. Bed 10.45pm - lots of pumps, lots of pain today, one line left running in case he needs paracetamol aswell in the night. Woozy from all the morphine. Lets hope tomorrow brings a brighter day. 

 

Thursday 25th May - Day 6

Joe up & down in the night with pain - throat v. v. v. bad.    Sue up for good at 6am - Joe told her to go back to sleep (as he did in the night), he says he feels so guilty Sue having to get up to him!!!!!!!! Joe in tears - didn't know where to put himself at 6am - sobbing & cross with the nurses as he was feeling so bad & in so much throat pain. Ice cube packs on his throat & sucking ice to numb his pain - did his mouthcare twice in the night! Eventually settled at 7.45am with Sue promising to sit up & press the morphine PCA as often as would allow (every 5 mins a 1mg dose). By 8.45am we had exceeded doseage allowed. Pain team upped Joe dose by 1/2 so now on 1.5mg + background increase.

Blood cultures taken as CRP rising (CRP is just another marker to indicate a possible infection).

10.30 feeling a bit better by doing icecube gargle & mouthcare. Actually managed to gulp a glass of water instead of sipping! Feeling hungry & wanting to eat but too tired. Joe sleeping - Sue on the PCA till 11.15am. Peaches for lunch - sick.

Managed to hide all Joe's central line ends under large plastic plasters & he had the best shower he has had since January!!!!

Any medication that can be changed to I.V. have now been done - less tablets to swallow per day - only approx 15 per day now!!! Yes NOW!!

A really dreadful day - both Joe & Sue feeling awful..........

 

Friday 26th May - Day 7

What an awful night - disturbances every hour at least - nurses for obs. ~ medications ~ resetting pump, doctor, pain team, another doctor.............etc etc

Found a line infection from yesterdays cultures so antibiotics changed to accomodate. We are in a way thankful they have found something - hopefully now with other a/b's he will begin to feel better .

As Joe so enjoyed his back massage Jax gave him, & as he was feeling so anxious with his pain & tiredness, I offered my services which he accepted (but Jax don't worry - your job is safe!)  but again, just as he was relaxing, more disturbances  

Joe's weight increasing too much as he is holding too much fluid so again they have a magic potion for this - now he is weeing every 15 minutes & still cannot rest!

Joe struggling with what he wanted for dinner then at 8pm decided he wanted a round Mattersons sausage - the hospital have sausages & frankfurters but they were not what he fancied so......................being the good mother that I try to be.....................in to the changing room to change out my 'scrubs' & in to my civvy's, down the 140 hospital steps to a Tesco 5 minutes walk away - no Mattersons....................walk into town - 5 minutes away - hurray Mattersons!! (bought 2 to be on the safe side!) back to hospital - walk up 3 flights - decided , this is silly - get the lift - waited & waited - too slow - I'll walk! - up the last 2 flights - change into my 'scrubs' to deliver Joe's Mattersons - a nurse with him administering more meds. - 'go & get your dinner mum I'll sort mine & by the way Uncle JFP will be here in 25 mins, they rang 10 mins ago'. OK - time to put mine in the microwave, get out my scrubs, eat, then meet JFP. Popped mine in microwave, changed in to civvy's back to microwave, looked out the window & see JFP pulling into hospital grounds...................so..........leave dinner - run down 140 steps waving through the windows at them - I can see them but THEY CAN'T SEE ME!!! - layed on the floor to wave through a very small window on the 3rd floor as I can see they are ringing someone - ME! - my phone rings (which should be off in hospital!) & then they see me!!!!! Hal-le-lou-ya!! So...........greet them - explain what's what & that JFP could come tonight & learn the ropes for tomorrow (JFP & NUN are Joe's other 2 named visitors - he will show Nun & Lou Sam's House then come down to the hospital)  - so.......Sue back up to BMT ward - 140 steps - eat dinner - get changed into scrubs - back to a very upset Joe - he had asked for Mattersons, yorkshire, roast pots & peas - the nurse was too busy & bought Mattersons & micro chips - at the end of an emotional week  - a very emotional boy...      v. v tearful all day - so absolutely fed up & exhausted. JFP popped in for 10 minutes - bed at 10pm asking our nurse not to disturb us unless absolutely necessary & to creep in & not let the door bang on her way in & out!!!Well!!!

(Apparantly when JFP had walked back to Sam's, he sat down, was sweating very heavily, was bright red & drank alot of water - Nun thought they were going to have to call 999!!!!)

*Received a text from Clare, Matt's mum - worse fears confirmed, Matt has relapsed - unbearable to think about - feel so, so, dreadfully sorry for them - a fantastic family................ Matts website = lemonjelly.moonfruit.com*

 

Saturday 27th May - Day 8

Woke 8am - Joe groggy but improved as time went on.

JC (consultant) came round & said Joe is a typical day 8 but doing better because he is eating & not many day 8's usually eat yet!

JFP & Nun came about 10.30am & gave us a laugh in their scrubs (picture to follow if they will allow me - no, actually - picture definately to follow!!) Joe appears to have 'the shakes' a wee bit?! Sue left for Sam's & left Joe in their capable hands - Joe still not feeling brilliant. Nun, Lou & Sue went off for an afternoon of shopping while the boys watched F1. Sue back to hospital for 6.30pm to take over.

Dave arrived with Jess & Ellie at 7.15pm - up to hospital to see Joe looking v. tired . Sue back to Sam's to be with the girls .

 

Sunday 28th May - Day 9

Woke 9am - bit of a disturbed night again. Mouth still v. sore~ eyes looking v. puffy ~ feeling v. tired .

Joe sleeping - Dave to Sam's for quick shower & feed ~ back to watch F1 & superbikes - yawn..............&  do suduko's (both Dave & Joe are v. good at sudoko so they try & out-doko each other every day! ~ sad'o's!!)

Sue came up after a lovely day of shopping with the girlies ~ Joe had a lovely shower & banana milk! Joe looking very sad today - missing normality & his friends .

Joe wanted to know all about the things the girls had bought so Sue said we'd try & find somewhere they could stand & show him through a window.

Sue ordered Joe's dinner - 6 fish fingers, new potatoes & veg - ate probably 1/2 which is fantastic for day 9!! Top boy!!

Dave found a place where the girls could stand & see Joe at his window & wave to him  so, so pleased to see each other.

Just realised, Mike (our consultant from Addenbrooks) has left a mesage on Joe's site - wow - that's so kind (he's a really lovely man  & scottish! )

Sue left at 7.30 - taking girls out for dinner.

Dave & Joe watched a DVD. Joe's B.P. high before bedtime - more meds. to overcome this.

 

Monday 29th May - Day 10

Yet another disturbed night - woken every 1/2 hour till 1am then every hour. Joe looking a little better today - eyes not so puffy but throat still so sore.

Expecting Lesley & Mark today - arrived 12.30pm - lovely to see them - had lunch - the girls went & stood in their place again as Joe wanted to see their new clothes they had bought yesterday which the girls modelled - underwear included! - then they went back with L & M . We all agreed we'd had a lovely girlie, shopping, eating, sleepover weekend!  

Sue back to hospital - Dave left for Sam's at 7.30pm.

Joe ordered a dinner of 6 fish fingers, roast potatoes & mixed veg - ate the lot - even with a sore mouth! Top boy!

B.P. up again bedtime - more meds - came down OK. Thinking of reducing Joe's pain relief tomorrow as he is coping v. well & not using his PCA very much today - review tomorrow morning.

Tuesday 30th May - Day 11 

Sue woke 8.30am after both getting to sleep properly about 4am - Joe up & down, in & out of bed - couldn't settle in the night - needed lots of wee's! Joe now snoring well - bless him! Woke 10.30 - showered & back to sleep till 2pm.

Dave due massage at 12pm then back to spend rest of the day with Joe - PS2 & sudoko's to keep the brain moving!

Sue massage 1pm - afternoon & evening off to update website!

Joe sick before bed.

I think it was today that they also said Joe has an infection in his line - A\B's administered.

Wednesday 31st May - Day 12

As Joe didn't need his Morphine PCA at all in the night, the decision was made by the pain team to take him off totally & also off his Morphine background. We were rather surprised as we thought he would be weaned off gradually.

Received, through the post, a present & MASSIVE PURPOSE MADE CARD from all staff on 'C2' where Joe was in Addenbrooks - so nice of them it made Sue cry.....

Joe had a massage done at lunchtime by a different nurse this week - Ann. Joe very tired today - slept most of the afternoon on & off.

Uncle JFP came to visit as he was in business in Avon & stayed for tea. Joe ate 1/2 of his tea - nothing tastes of anything today - no flavour.

Watched TV before bed at 10.30pm - still not feeling good - can't say how exactly - just non-descript not right! Told Kylie (our nurse) who suspected withdrawal symptoms from the morphine. Dr John came in to check Joe - he said the same, suspects Joe is going through 'cold turkey' & will write up oramorph (a lesser dose of morphine in tablet form) just in case Joe needs it. Sleep at 11pm.

2am obs. - temperature 38.1 in one ear & 38.4 in the other! Oramorph offered but Joe's tummy dodgy so daren't risk it! Had IV paracetamol & codine to help mouth pain & blood cultures taken from line. Anti-sickness given. Still feeling strange & just couldn't settle - up & down getting frustrated so Sue suggested he take the oramorph as he may be able to settle & sleep, which he did & eventually settled.

 

Thursday 1st June - Day 13

Got to sleep in the end - fairly undisturbed until bloods again at 6am. Sue up at 8.30 - texting till 10.30! - well - I do have 1000 texts to use per month!

Joe sleeping - still not feeling right. Joe kept promising to get up but kept dozing off again till 12.30pm when he eventually got up for a shower. Dr Jo & JC says they may change anti-biotics again as his temperature keeps spiking & they cannot seem to get it down permanantly.

Dave spent the afternoon with Joe doing sudokos. Sue doing the laundry & letter writing at Sam's - a lovely hot day.

Joe received a phone call from 'the one & only Phil McCrack' - which was really good for his well-being- & made Joe laugh- thanks Phil - AKA ????

Sue went off to Tesco's in the evening to do a big food shop (first time driving in the city). Dave's final words to her were don't get lost! Tesco's is only 2 or 3 miles down the road & yes Sue got lost - OMG - hopeless - no sense of direction whatsoever - travelling on the M4 in the direction of Wales! Eventually got to Tesco's 1 hour later! Dave always says she shouldn't be allowed out on her own!!!!! 

Joe sick in the night !

 

 

Friday 2nd June - Day 14

Up 8am - as Joe was going in the shower he felt strange - sick again. Dr Jo spotted a redness over Joe's torso & are now going to change A/B's again. Now on one called 'Lin-ez-o-lid' on the recommendation of the micro-biologist - apparantly his 'line bug' should respond better to this. 

Also, besides all Joe's other medications (when I am really bored I'll let you know exactly how many different meds he's taking per day!) he is going to start GCSF infusions (to help kick-start the immune system into reproducing faster) which should help to destroy the infection in his line/body.

Joe feeling really horrible & being sick throughout the morning/ early afternoon. He also is suffering from 'ryegores' - which is the body shaking uncontrollably - probably due to the high temperatures his body keeps reaching - 39.4 I think is tops at the moment (unless Dave tells me otherwise!) He feels freezing cold & wants to wrap up in a ball in his bed when in fact he is too hot.

3.30 & Joe is sitting out in the chair playing his PSP looking scrummy & feeling - 'errmmmm - yeah, not bad mum!'

Had a chest x-ray done in his room (routine) - results to follow.

Started feeling yuck again, sick & ryegores. So, so tired, so bed early & to shut off from these horrible things his body is doing at the moment. 

10.45pm Dr came & said they think his symptoms are due to GVH which is his immune system having a little war with the donors immune system. All the markers are not that of infection more immuno so they won't be rushing to whip his line out. 11.15pm another liquid A/B for his raging temperature - 39.1 - 11.30pm bed -again! 12am - sick!

1.15am taken off pump - no more disturbances till 6am - yippee - some sleep perhaps!? 2pm settled down for the night......

 

Saturday 3rd June - Day 15

6am - sick & ryegores - dozing till 9.30am. Temperature 39.1 - sick. Given more anti-sickness.

Consultant (John) explained they are waiting for todays counts then they will make any further decisions. At present they still think it's the GVH  (Look up Graft verses host disease or I'll explain when I have more time)  -  basically reiterating what the Dr said last night - no further markers for infection etc etc, also spoken to Joe consultant JC & she agrees with him.

They still hope not to remove his central line but if necessary he may have a femeral line in his groin again (which we asked not) or a temperary neck line - but all these would be done only if absolutely necessary & they are unable to get on top of this blasted line infection! Other meds are to be changed - anti-fungal back to ambizone & steroids started to stop GVH.

10am Sick & ryegores again - more anti-sickness given. Very hot & red. 

Sue off to Sam's - bad headache & needed some sleep - if only Joe could come too for a few hours peaceful sleep.........................

12.15pm given 2 new steriods. Managed to eat some lunch & have some milk! 

A lovely hot day  The ever lovely Jack rang - Joe was really pleased to speak to him  

Dave spending the night with Joe - Sue updating website then to the gym!

Another couple of very, very worring days for us all!!! Thanks everyone for your patience & texts!

 

Sunday 4th June - Day 16

Sue up early then back to hospital for 10am. Dave & Joe up 9ish. Dave back to Sam's.

Joe had a lovely shower - in a lovely relaxed mood - just sat chatting. Dave back for 12.30pm to watch Moto GP + BSB with Joe - yawn............ Sue went off driving (OMG) complete with map, to Filton to a retail park for some retail therapy! Returned without getting lost - amazing!

Sue back to hospital for 6pm - helped Joe choose his dinner, Veggie lasagna, chips & peas - although it was really yummy, Joe could only eat less than 1/2 of it - his taste buds just aren't working properly at the moment & whatever he eats just tastes plain. 

Talked with our nurse about how quickly Joe could be out of ISO - he is looking to beat the record which she thought was about 21 days! That's the spirit Joey!

Watched Wallace & Gromit - The Wrong Trousers (cause Sue had never seen all of it before) & Joe thought he would like a kennel like Gromits - all nice & cosy ........bless ............ & also Robin Hood in the evening.

Bed 10.30pm - Laura, our nurse said she can brings obs forward so he should be done for the night around 12ish so we can hopefully get a decent night from then onwards - hal-le-lu-yah!!

12.50am Joe spiked a temperature - 38.4! More paracetamol!................ both slept fairly well in between disturbances.

 

Monday 5th June - Day 17

Sue up 8am - Joe dozing till 9.30! Joe woke up feeling good & looking very cute today!  & singing in bed !  Feeling hungry so had breakfast then a cruel mother made him get up & showered by 10.30am! Sat & chatted about home & what we are missing.

Dr came in & said his temperatures are gradually coming down to a more consistent level - phew!   His markers for infection are still low (which is good news!) 

Also the results from his chest x-ray on Friday are all fine - top boy! 

Joe insisted that he works through a suduko with Sue  (you know how Sue loves numbers!) & so she told him she would repay his kindness & teach him the Rubiks cube!   - Joe was not impressed! Sue managed to complete a suduko then went back to Sam's at 1.30pm - then into town. Dave up with Joe sudukoing & PS2ing! Joe sat & wrote letters to his friends. Dave back for tea & a desperately needed haircut.

Dave & Joe watching 'Speed' tonight - Sue updating website, chocolate & a nice soak in a hot, deep bath!

 

Tuesday 6th June - Day 18

Temperature hit 39 this morning with ryegores! Drs. still think it's GVH as CRP is 11 today. Arranging a CT scan for later on today just to check there is no fungal chest infection - due there 3.30pm. They bought a wheelchair up for Joe to go to the scan - we both agreed 'No Way - Joe is not a cripple & will walk unaided!' Had to wait 20 minutes & the scan took less than 5 minutes. Results were absolutely clear.

Sue massage 12pm, Dave 1pm - ooohhhh lovely!

Sue back to Sam's for dinner, just finishing, got a call from our nurse to say Joe upset over his dinner. Sue rushed back to comfort him & took him some food. Spent the evening just comforting & trying to control these temperatures - 38.7 & ryegores. Bed 11.30pm. 11.40pm - BP low - returned to normal later on. 

 

Wednesday 7th June - Day 19    

HAPPY BIRTHDAY DAN!

7.30am - temperature & slight ryegores - paracetamol. 8am - Cyclosporin - red & hot! 9am - steroid to dampen down GVH. After showering felt odd? - very tired.

12.30 massage with Jax. Not really in the mood to appreciate it today. Feeling down & low.

Dave & Joe doing suduko's - Dave has a new book! Poor Joe!  

Afternoon - temperature & ryegores again! Needs hydration later on as weeing out more than going in.

Evening - Joe feeling shaky & unwell for about 1 1/2 - 2 hrs. Dr came & said they will up Joe's dose of steriods - now on 60mg instead of 30mg  (just going cautiously initially) - should kick in after 48hrs (stops GVH & engraftment syndrome.) 11pm - another load of tablets, calcium, potassium holder & a 5hr infusion of potassium phosphate. All cultures taken again. Still hoping not to remove line - reaccess situation tomorrow.

 

Thursday 8th June - Day 20

Up 9.30 - hoping to get moving today as Joe still very depressed & low. Had comfort time & a chat - Joe main depression point is 'getting out'. Dave came up with loads of post which  Joe enjoyed reading. 

Very tired - dozed on & off from 3.30 - 6.30pm. Dave ordered Joe's tea at 6ish - when Sue returned at 7.30 his tea had still not arrived. When it did at 8.15pm it was dry nuggets, burnt mixed veg & new potatoes - disgusting - sent it straight back & ordered ravoli & carrots - ate a small amount but by now gone past it & lack of taste buds are not helping the situation. 

Snuggled in to watch part 2 of 'The kindness of strangers'. Bed 11.30pm - not such a good sleep.

 

Friday 9th June - Day 21

Woke lots in the night - lots of meds due today so showered by 11am. Still high temperatures. Weight dropping.

Joe & Dave watched the game then did more sudukos.

Joe requested chicken kiev's for tea which Sue bought x2 but Joe was fed up eating tea on his own so wanted Sue back there for when he ate - fair enough. When it came, the keiv was ok but the chips were a bit soggy & the peas were not the petit pois I had bought for him so Joe left it

Very, very tired - looking forward to hopefully feeling energised after 2 bags of blood today.

Temperature in cubicle 26.8 - air-con. up the shoot - all feeling harassed!  Poor Dave came in full of smiles but was soon deflated by Sue & Joe's mood...... Joe fancied a 'nice' sandwich instead of hospitals rubbery bread so Dave was sent out to buy the necessary. Now started to bring in our nice soft bread as well - anything to get Joe interested in food again!

Sue went out in afternoon racking her brains as to what could be bought for Joe that was allowed on his 'clean diet' (certain foods & all fresh produce is not allowed & the hospital does not entertain you bringing in fresh fruit & veg.) Went & scoured Sainsburys' fridges for fresh, healthy, cold foods that Joe may be tempted by on a hot day. It worked & Joe ate the best he has done for ages!

 

Saturday 10th June - Day 22

Sue up to hospital by 10.30am - Dave leaving decent time to be back for footie at 2pm - England v Paraguay.

Joe had one of those moments when he just needed to get things out of his system - very, very emotional - needed his mum around & needed to get his frustrations out of his system - so he did - & looked so much better for it! Joe appeared to be cheered up by talking to Matt Fletcher & Luke Willy Nic Martin!

Dave & Sue now clean out of ideas to lift him (what he needs is to be discharged from iso. & to see his sisters & mates) but in the meantime, Joe has shown an interest in a new PSP game - James Bond 'From Russia With Love'.

Boys watched footie & done more suduko's. Sue came back with Chicken Kiev's which Joe had requested for tea & the new psp game - a big smile from a previously fed up star patient!  Ate both kiev's with a few chips & petit pois - is that appetite returning??????

 

Sunday 11th June - Day 23

Joe woke in good spirits. Jez our nurse came in & said that all being well, Joe may get moved to non-iso perhaps tomorrow - awaiting an available cubicle - but so much still depends on Joe             

* Temps can still be high but levelling off to a more acceptable degree

* Hardly on pump anymore, just lots of tablets so that's good for getting out

* Eating OK

Joe's early morning sodium levels are confusing the Drs as the machines keep giving inaccurate readings - for Joe only. Steroids being reduced today by a 1/4 & also going to access the A/B situation & see if they can cut some out.

Dave back for Moto GP. Sue got room ready for Joe's, however short, return! Excited! 

 

Monday 12th June - Day 24

5am big thunderstorm! Sue finished the room then to hospital for 12.30pm. Joe due magnesium infusion over 2hrs so put up at 1.30pm - done by 4pm.

Then guess what?????????................We are allowed out!!!!!!!!!!!!!!!!!!!!!! But only till 6.30pm.  Phoned Dave, he was in town, so came up to meet us. Joe really wanted to 'walk the hill' & as we were both there with him, could hardly refuse - he's said all along it's what he wants to do! (Now anyone who has been to visit us knows that even top athletes need oxygen after walking St Michael's Hill) but only 2 brief stops & Joe made it - what a star *! (As Joe's trainers were up at Sam's, he walked back in Dave's slippers - Dave said had he had enough money on him, he would have bought Joe a pair of 'Jesus creepers' in the town to walk up in - lucky escape eh Joey!) 

Joe wanted his own space & mum's cooking but not before having a piece of freshly peeled raw carrot, apple & cucumber - also for dessert, he requested a fresh fruit salad - he'd been waiting 4 long weeks for fresh fruit & veg! Taste buds are starting to return!

Back to hospital for 6.30pm - took the lift to level 7!! - now in cubicle 11 - non-iso.

Joe happy on MSN whilst Sue cleaned  - this cubicle is disgusting - saving the evidence to show head HSA tomorrow!

 

Tuesday 13th June - Day 25

After a very restless night (for no apparant reason) woke 8.45am. Dave & Sue due massages today at 10 & 11am so hopefully all 3 of us will be together for lunch. A real heavy downpour of rain just as Joe & Dave were coming out of hospital so called Sue to collect them in the car - they boys were dry but Sue was absolutely soaked to the skin!

Now Joe is out, he is like a walking Forrest Gump - all he wants to do is walk! Insisted on going to buy a gift for Fathers Day.

Dave left for Hitchin at 7.30pm, Joe back to hospital for 8pm.

Had our first boring night in hospital.

10pm - temperature 37.9 in one ear & 38 in the other - OMG!   11.15pm - temperature 37.3 & 37 - phew!

 

Wednesday 14th June - Day 26 

Sue highly embarassed as one of the Drs came in at 9.45am whilst she was sleeping with a pillow over her head to block out noise!  Opps!

Stopping two A/B's today so allowed out as from now! Also told there may be  the possibility of total discharge from BCH by the end of June!!! Yippee!!!!

Back to Sam's to feed Joe a hearty breakfast & Joe just chilled in the afternoon - sudukoing!

Hospital for 8pm - Joe talked of his excitement at seeing his sisters & looking forward to Nanny's sausage tart! 

2am - neither could sleep so ordered tea & biscuits from our nurse! Joe says his head is full of suduko boxes!! Sat & chatted about the year 11 ball & Joe made his shopping list for when he goes on a big spree with Jack! Settled again about 3am.

 

Thursday 15th June - Day 27

Dr came in & told us 99% chance of discharge TODAY! Packed the room up very quickly  Knowing Joe would want to walk up the hill & not wanting him to carry anything, Sue took the first load up then came back for 2nd lot & Joe. Back to Sam's for 11.30am - still unsure if discharged from non-iso but they will phone later to confirm.

Joe itching to go out in the afternoon so walked to Brandon Hill which is a big park area with an old tower called Cabot Tower - one of Bristols sights - had an ice-cream en-route. (Joe really wanted to go into town but this is forbidden & far too crowded after such intense treatment - also it's so hot today)

Watched England v Tobago - 2-0. Had planned to sort the bags but too tired from our midnight tea party last night!

 

Friday 16th June - Day 28

Due for outpatients appointment 8.30am but no room on level 6 day beds so going to level 7 - they too are short of space so we are put in the parents room for Joe's IV's.

Back to Sam's then Sue got the room ready for all our weekend visitors. Gave girls the privilage of having the afternoon off school, otherwise they would not be here till 8pm & all 3 siblings are desperate to see each other after 4 long weeks apart - arrived at 5pm.

Auntie & family arrived for a fleeting visit. A very hot night.

 

Saturday 17th June - Day 29

Cooked breakfast for 10 people (S,D,J,J,E,Nanny, Auntie & family) then auntie & family went off till dinner at 7pm, the rest went to Brandon Hill & this time actually climed Cabot Tower. Back to Sam's.

Cooked tea for 10 & just chilled in the evening - Auntie & Co left for their hotel at 9.30pm.

We decided we had all had a nice day, all doing various bits, but really it was too much too soon for Joe - v.v tired. All slept well.

Sunday 18th June - Day 30 - Fathers Day!

All went for a walk along the harbour - Joe's feet too sore to continue so Dave & Joe went back to watch moto GP! Girls went on an open top bus tour of Bristol - really good - included all the main sites, along the downs & under the suspension bridge - all without getting lost! 

After dinner Dave, Jess, Ellie & Nanny left for Hitchin. Ellie's face looked like this !

 

Monday 19th June - Day 31 

Due in 'day beds' at 8.45am - Joe suggested we walk the 112 steps to level 6 - so we did!

First time of having levels taken for 'chimerism' - to see how much of the donor is in Joe - results in approx 1 week! Had bloods taken & waited till 11am for anti-fungal IV - Dr expected us to be then free to go but bloods show potassium needed - another 2 hr infusion - left day beds at 3pm - but the good news now is we are not needed back till Thursday - 2 full days to ourselves. Just chilled in the evening.

 

Tuesday 20th June - Day 32

Our very first 'free' day - no visitors or appointments so had a lie in till 9am - lovely!!

Joe looking & feeling 'yeah great!'

Had the unexpected opportunity of a massage at 11am - offered it to Joe but he declined so Sue just had to succumb..........shameful! Joe caught up on writing to his friends & his thank you letters.

Both went to Borders as it is a fairly quiet shop & Joe desperately wanted to look for some gifts & cards - (Cheeky Monkey Matt, you can now know they were for you!) Sue went to town with a long list of things as we were not totally successful in Borders whilst Joe finished most of his letters.

Watched footie in evening - England v Sweden - 2-2.  

Mike, our consultant visited BCH - did he visit us? Did he?      Did u Mike?  

 

Wednesday 21st June - Day 33

Walked out to get a paper & the all important MCN. Joe cooked himself eggy bread & then was suddenly so, so tired - slept for 2hrs. Wrote lots of cards & sent parcels off to friends in afternoon. Joe on internet in evening, Sue to the gym.

 

Thursday 22nd June - Day 34

Up for 7.30am as due in 'day beds' at 9am. Bloods taken straight away & Dr seen at 11am saying we could go not realising we were still awaiting an hour long infusion of anti-fungal. 12.15pm were told Joe's magnesuim was very low & tablets would not suffice & he'd need a 2 hr infusion - bang goes the day - Joe won't be flushed off before 3.30pm!  Not happy!

Back to Sam's for a while before walking to Sainsburys - Joe has fancied a chinese for a few days now & so that's his tea tonight - Sue on the other hand has salmon & VEGGIES - yum!

 

Friday 23rd June - Day 35

Due in day beds at 9.30 for anti-fungal only today. Last night Joe had planned the itenery for today so after hospital we walked a very long way round (Sue's navigation) to Staples looking for monkey stuff. After asking the quickest way back to the hospital, we realised we had walked probably 4 times further than necessary!  Went & bought some nice fresh rolls for lunch, back to Sams to get a picnic ready to take to the lovely tranquil gardens behind Sam's. Although Joe & Sue both took things to do, we both fell asleep in the warm sun............

Dave & Ellie due to arrive tonight.

 

Saturday 24th June - Day 36

Girls went to Tesco to do a food shop about 11.30 whilst Dave and Joe went for a walk & to get a paper finishing up with a sit in the tranquil gardens behind Sam's for 10mins - back to Sam's to watch MOTO GP. Sue and Ellie back at 2pm.

Joe and Ellie went to the park for the afternoon - they had some cherries and sweets, done some of Joe's colouring book and had a chat together - both enjoyed doing nothing inparticular apart from just being together......... Sue and Dave went shopping in town for a couple of hours.

Spent the evening wrapping gifts for BMT ward & thinking up a rhyme to put in a card for a very special football mad nurse called Jez!

 

Sunday 25th June - Day 37

AM: All 4 of us went on the open top bus sightseeing tour as the boys had not yet been.

PM: All went to a little village called Longcot to visit relatives who were staying with their relatives - back for the 2nd half of football - England v Equador 1 - 0.

Had tea then went up to BMT unit to give presents - after all, we could be home this time next week..............

Dave & Ellie left at 7.30pm - Sue & Ellie looked like this  

 

Monday 26th June - Day 38

Sue woke after a lovely sleep at 7.18am - alarm set for 7.20am!

On day beds at 8.45am for bloods & ambizone anti-fungal. Magnesuim low so a quicker than normal infusion?? & away by 2pm. Joe doing his electronics homework all morning & up until 4pm till he reached a point where he could do no more - awaiting software delivery from Addy Boy! Sue jobbing/pottering/town.

Joe feeling well & looking well - JC (our consultant in Bristol) says she will contact Mike (our consultant in Addenbrooks) & see if we can't soon be transferred to his care - Oh no! That means we'll have to go home  !

Joe lolling in a deep hot bath as I type - aarrhhh! Rained ALL day! 

 

Tuesday 27th June - Day 39

Joe looking forward to a lay-in today. Sue has massage booked for 10am - couldn't persuade Joe this week though!

Planning to go out with a picnic to the quayside today - weather permitting! Well, we have to fit these things in - just in case we are told to go home!  

No pressure Mike but we've got u a presie!! 

Went for our picnic then on to SS Great Britain - The World's first great ocean liner, now refurbished & an exhibition item on Bristol's Quayside - very educational! Joe exhausted but did well getting back to Sam's in 20 minutes!

A boring evening - we both have things to do but can't be bothered - we both feel like we are just killing time here -  we just want to come home now........  !

 

Wednesday 28th June - Day 40

Due in day beds 8.30am. Quick top-up of anti-fungal & away by 10.45am.

Had the afternoon on laptop - Sue went to Debenhams. Both had a boring evening - we just want to come home now!!!!!!!!!! Joe > Sue > 

 

Thursday 29th June - Day 41

 

Friday 30th June - Day 42

Going Home 


 

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