Diary: Jan - May 2006
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This page contains diary notes of each day from the Friday 13th January 2006

to present day.

Please note that some passages may be upsetting.

 

Fri 13th Jan:

 

AM: GP appointment for pain in chest/arm area.

Referred to Lister for further tests – suspected thrombosis.

4pm: Given the news every parent dreads – Blood tests show Leukaemia.

5.30pm: Ambulance booked for admission to Addenbrooks to diagnose what type of Leukaemia

10pm: Further tests reveal both main childhood types (ALL + AML) which is called ‘Biphenotypic’ Leukaemia (BAL). Had scan which revealed blood clot in vein – hence pain chest/arm, caused by bloods not working properly.

(When we were first told, Joe's type of Leukaemia was called 'Biphenotypic' but we have since been told it should have been called 'Bi-lineage' as there are 2 definate 'lines' of different Leukaemic cells instead of 2 things happening in one cell.) < this bit's for Dr Matt!!  

 

Sat 14th:

 

Nobody ate much all day. Sue physically sick all day. Joe irritable at the thought of being in hospital for at least a month. Family visited pm but were unaware of the full extent of illness.

 

Sun 15th:

 

Jess, Ellie + Nanny told full extent of illness. Took them to visit. Joe irritable + frustrated.

 

Mon 16th:

 

All consultants bombarded us in the morning, many, many people in & out all day - play staff, CLIC workers & nurses - had to tell some to go & leave us & both getting very irritated by them. Joe feeling very sick. Emma came to visit, still unaware how ill Joe was.

Joe had pic line in @ 5pm – a bit of an uncomfortable experience but very brave.

An extremely emotional day for all – especially Joe – anger – frustration + emotional.

 

Tues 17th:

 

AM: Bone Marrow taken under G.A for final analysis. Very down + poorly.

8pm: Started day one of chemo. Extremely sick + nauseaus all night.

Looked very grey + ill. Very bad night.

 

Wed 18th:

 

Felt sickly most of day – hardly ate anything. Back hurting from B.M. Very irritable, low + tired. Family visited pm – nobody could lift his spirits.

 

Thurs 19th:

 

Still slightly nauseous but feeling much better – appetite improving. Back much more comfortable. Started to socialise with Matt. Lessons started with Maggie + Robin.

Quiet upbeat – a good day reported. Sue returned in evening to a ‘Social Club Room!’

 

Fri 20th:

 

Lessons am only. A good day.

Sat 21st:

 

Off pump earlyish so Joe + Sue went for a long walk across a field to the railway crossing.

Jack, Adam + Paul visited with gifts galore! + told Joe of the school's collection.

Joe absolutely overwhelmed at people's generosity & kindness.

 

Sun 22nd:

 

A fab day with Dave!

 

Mon 23rd:

 

30mins English school work with teachers. Rest of morning spent on PSP’s with Matt!

Visitors afternoon + evening. Very tired.

1st day Sue’s eyes stayed dry.

 

Tues 24th:

 

Electronics work till lunchtime. Very tired in afternoon, not keen to go outside.

Sue + Dave appointment with consultant to discuss tissue typing + bone marrow transplant.

Joe’s temperature rising! Antibiotics x2 started. Visitors pm.

 

Weds 25th:

 

Joe on his pump most of the day – antibiotics – blood & platelets (x2) transfusions!

Played buzz with Matt + Sue won a superficial sit on lawn mower!! Very tired today.

 

Thurs 26th:

 

Excellent night. Dave + Joe went for a long walk 1hr 10 mins!! Due more blood + platelets later.

Adam + Paul came visiting & bought Joe a portable DVD player - wow!

 

 

Fri 27th

 

Chest X-ray to investigate any undetected problems as temperature is slow to drop.

X-ray results fine but will start routine anti-fungal later.

 

Sat 28th:

 

A good night. Lots of school friends visiting as well as family. On pump most of day with anti-fungal, antibiotics & platelets. A late ‘boys night in’ watching the boxing!

 

Sun 29th:

 

A good night. Loads more visitors – friends + family. Joe pleased to see everyone but left him very tired.

Mon 30th:

 

A good night. Walked Joe’s cousin back to college then into town. Looked round the cinema & bowling complex. Friends + Jess + Ellie visited + had tea with Joe + talked about the school disco on Wednesday. Joe sad as he knew he was unable to go.

 

Tue 31st:

 

On pump all day. Very sick after breakfast. A bit better by afternoon. Didn’t eat much tea.

Rash developed – nurse suggested lack of platelets. Started the shakes.

 

Weds 1st Feb

 

Very bad night. Doctor called. Rash getting itchy, temperature 38.7 + rising. Terrible shakes + felt cold. Very sick + nauseous all morning. Doctor Matt suspected line infection. Changed antibiotics + more drugs prescribed. Line removed + very large canula  inserted in arm to pump large amounts of fluids in. Had new pic-line inserted in periferal groin vein – very, very painful but Joe extremely brave but clearly very frightened. Dave rushed up to be with Sue + Joe. Joe taken to Paediatric Intensive Care Unit (P.I.C.U.) overnight for specialist care. Heart rate high so additional medication given to support his blood pressure. Consultants came up to see Joe in (PICU) Sue + Dave given a room in Acorn House. Left Joe stable at 12.30am. A very, very scary day.

 

Thurs 2nd Feb:

 

Sue +Dave back to Joe for 8:15am. Fairly good night in PICU – temperature had reached 41!

Joe started eating thoughout the day & generally feeling much better. Temperature starting to drop.

6:30pm: Blood transfusion started. Rash getting more angry + shakes started again – blood transfusion stopped as possible reaction - Joe improved. Canula in arm removed as feeling bruised + sore. Joe much more comfortable, went to bed O.K. + much happier although still in P.I.C.U.

Joe snoring like a train! Dave +Sue left @ 10:45pm

 

Fri 3rd Feb:

 

Joe had a good night – no sickness or nausea. Crumpets + lots of milkshake for breakfast. Nurse explained all his E.C.G. traces to us & that they would be stopping the B.P. drug to see if he could cope without it. Dopomine stopped (B.P drug) – Joe absolutely fine. Joe back to C2 ward at teatime – ‘C Bay'. Girls came up & we all had tea together.

 

Sat 4th Feb:

 

Temperature up in the night 38.4 - woke with the shakes – temp. reviewed hourly. Feeling OK when awoke @ 9.30am. Moved into ‘F’ for isolation on recommendation of Dr Matt. Visitors in afternoon laiden with PSP games & 'a box of 36 special Florida style opal fruits!'

 

Sun 5th:

 

Still in isolation. Visitors in afternoon. First night on his own – Dave & Sue have colds + would rather Joe be lonely than infect him (not as Jack wrote initially- Joe be lonely THEN infect him!!)

 

Mon 6th:

 

Chest X-ray to check all ok after PICU experience – all fine. Visitors afternoon + evening.

Allergic reaction to Amnitop numbing cream. Weight dropping – Joe sick + anxious.

Moved back to ‘C bay' at 10:30pm.

 

Tue 7th:

 

ECHO scan on heart – routine after PICU drugs – all ok. Visitors afternoon.

Joe lonely without mum or dad. Sue returned at 9.20pm to a sleepy boy – Joe very, very pleased to see her!!

 

Wed 8th:

 

Dietician on Joe’s case regarding weight. Joe getting anxious as he was given a target to reach by Friday. No visitors. Sick before bed.

 

Thurs 9th:

 

Joe insisted he would prefer to be left alone to reach his goal rather than be tube fed. Sue spoke to the dietician to take pressure off & we came to an agreement. Joe had new canula in elbow crease. Unable to hold & write so sue did electronics planning – with lots of guidance from a meticulous Joe!! Mr Wilson – you’ve succeeded with Joe and taught him well!

Visitors pm. Very tired today. NO SICKNESS!!

 

Fri 10th

 

Weight on the increase! Sue bought Joe home for 1½ hours! A short visit long awaited by Joe + his family. Back to hospital for 6.15pm. Canula leaking – removed at 8pm. Magic Emla cream on arm & leg for back up! Woken to have new canula in arm crease at 1am!

 

Sat 11th:

 

Sue bought Joe home again from 12pm-6pm. Joe was desperate for a nap in his own bed + did so! Jess had hoped to stay the night with Joe as Sue & Dave had had an evening out booked for yonks, but as under 16, Jess was not allowed. Dave stayed so Joe did not get anxious – The big weigh in is on Monday!

 

Sun 12th

 

What a fantastic day! Joe, Dave, Jess and Emma went to leisure park, played pool and went to the cinema then on to Aunties for a roast dinner and sticky toffee pudding!

Back to hospital for 6.30pm for medication. Joe had a lovely, lovely day – bless him.

 

Mon 13th:

 

Jack, Luke Martin + Ellie came up on the train. Joe spent the day out + around with the boys – went out for lunch & had a laugh! Visitors in evening. Joe had the evening munchies ‘big time’ consuming 2 doughnuts, 5 packets of crisps, choccy + iron brew!

Matt back in for 3rd lot of chemo.

 

Tues 14th:

 

Auntie + family came up AM. Jess, Terrilee & Michael later on. Joe, Jess, Terrilee + Michael went to leisure park + Pizza Hut for dinner! Joe got a valentine card sent to the hospital! (Whut Woo!!)

Eating well & feeling well!

 

Wed 15th:

 

Visitors lunchtime, afternoon + evening. Scan on blood clot – small clot left – very pleased with progress.

 

Thurs 16th:

 

Bought Joe home from 12-5.30pm. Had a chilled afternoon at home. Back for 6.30 medicines.

 

Fri 17th:

 

11am: Told Joe may be able to go home for a few days depending on counts (must be 0.5 or above for 2 consecutive days)

12pm + 1.30pm: Girlies from school came up - Hayley, Mel G, Chloe & the lovely Gemma (with Valentine card!)

Left at 4pm ladened with medication + instructions.

9pm Lister for Clexaine injection (anti-coagulant).

 

Sat 18th:

 

9am: Lister for Clexaine – Dave did this for the 1st time. Joe gave him 3/10! Took Joe to see Jack where they played computer games for 3 continuous hours with Jack winning at football and boxing but Joe winning the racing games and at basketball with a score of 28-6!

Joe was also bombarded with food by Jack’s mother to keep up his calories!

JFP, Nun & Lou came round. Sue & Dave got their 2 hours out & we all sat & ate very hot chilli kebabs!

 

Sun 19th - Weds 22nd

 

A lovely time at home / out & about enjoying friends & family.

 

Thurs 23rd

 

Up at 6.45am to be at Addenbrooks for 8.00am admission - finally arrived at 8.45am!

Booked into the day unit, talked about procedures to follow whilst under G.A.(Central line inserted into vein in heart / Lumber Puncture with chemo given to the spinal fluid (around the spine & brain) & Bone Marrow aspirate to check (purest form) levels of Leukaemia.

Could take between 1 - 2 hours depending on ease of procedures.

Waited in day ward - Joe starving hungry & decided when he could eat, he would like BBQ Hula Hoops (he could smell the boys in the bed next door!) & Iron Brew to drink.

Eventually went up to theatre @ 12.30pm with Dave, our nurse & a jolly scottish porter we couldn't understand!

Sue & Dave went off to eat (with a bleep) for the first time that day! Exactly an hour later Joe was out of theatre & in recovery. Holding his own, so they brought him back to Paediatric Day Unit (PDU) where he awaited to be allocated a bed & was at last able to eat & drink!

Approx. 5.30pm we move Joe on to the ward to a VERY HOT & STIFELING 'A bay'.

 

Friday 24th

 

Awoke early feeling ravenous - 4 crumpets & cereal for breakfast. Had trouble moving his neck due to the Hickman line insertion yesterday - very sore. Back also very painful, again, due to yesterdays procedures.

Started Day 1 of second course of Chemo.

 

Saturday 25th

 

Slept badly - in alot of pain needing pain killers. Had a good breakfast & went for a nice walk with Dave. Faithful Jack came to visit along with the lovely 'Matt Cowling', Chloe & (anotherbit of totty who I will name when Dave remembers!) & went out & about off the ward.

Started to feel sick in the evening - (probably due to a specific chemo given on days 1,3 & 5) didn't eat much tea but had a  nibble in bed whilst watching the boxing with Dave.

 

Sunday 26th

 

Woke up feeling tired although had a good nights sleep - sick between breakfast courses.Went for a 3/4 hr walk with Dave - came back exhausted & needed a sleep. Not hungry for lunch or tea. Visitors came in the afternoon (JFP, Nun & Lou) with special homemade soup for Joe.

Other faithful visitors had to be put off even though 5 minutes from hospital due to Joe not feeling up to visitors.

Joe given stronger anti-sickness (nozinan) which zonked him out till the morning.

 

Monday 27th

 

Woke still feeling quite sicky. Cereal for breakfast, plain dried toast for lunch & pack of hula hoops for tea - no appetite today & felt pretty yuckie all day. Nan, Deb & Emma visited. Sue walked Emma back to college whilst Joe chatted to visitors. Slept for 2 1/2hrs once they'd gone.

Went out for some air later that evening. Bed @ 11pm - very hard to sleep - very hot & noisy.

 

Tuesday 28th - Pancake Day!

 

Rubbish sleep but Joe felt great due to no nausea. Mandy came to visit. Joe had 8 (small) pancakes for lunch as well as a good breakfast.

Dr Jo came & told us results had come back from Bristol re: platelets. In future Joe will need special HLA platelets because the anti-bodies in his blood eat the platelets too quickly but when transfused with the HLA's, should top up his system quicker & therefore stay much longer. The special platelets will take 2 days to order so we need to be one step ahead if the platelets start to drop.

Had another 8 (small!) pancakes for tea - a mixture of sweet & savoury fillings!

Joe getting a bit frustrated & upset - not been off pump today & needs fresh air. Dave came up with Jess, Ellie & Nanny & cheered him up.

Eventually got out for some air at 9.30pm.

 

Wednesday 1st March

 

Woke feeling great - no nausea! Went 'out' from 12pm - 7.30pm. Had a good feed up whilst out - back for 7.30pm medications. Had a lovely time out. Paul, Adam & Hannah visited.

 

Thursday 2nd

 

Felt good - went 'out' from 11.30am - till 4pm. Medication not due till 7.30 but that's all the time we're allowed today!

Mel phoned to say 'Joe is in The Comet". He acted pretty cool but Sue was eager to see the article - so Mel read it word for word (very enthusiastically) down the phone. After seeing his picture in the paper, Mel's mum is now in love with Joe!

 

Friday 3rd - Day 8 of IV chemo

 

Feeling pretty good. Dr. Jo told us, on Mike's (consultant) instructions, Joe will need a blood count before & an hour after every platelet transfusion just to see how his count differs after being transfused.

Took Joe 'out' at 11.30am - returned with Dave for the weekend @6pm.

 

Saturday 4th March

 

Feeling good today. Loads of school friends to visit today - had a good muck about in the teen room!

Auntie bought up a roast chicken dinner - tasty! Watched Starsky & Hutch on DVD.

 

Sunday 5th March

 

Dave took Joe home till 7pm. Ward manager Carol sang to Joe & Sue very loudly through the intercom system 'Welcome Home, welcome - Joe, we've missed you - come on in & close the door!'  (you young un's will have to ask your parents the tune!)

We've been moved! YES! Now in with Joe N in 'C bay' - Much cooler, quieter & window with a view (in to the day centre!)

Snuggled down & watched Bridget Jones no1.

 

Monday 6th March

 

Awake early - 8.30am! All consultants round (Mike, Denise & Amos) & Dr Jo. Arranged a meeting for later with Mike.

Joe spent lots of time doing his electronics course work on the computer - research & planning!

Went for a long walk along the back fields & came out in Shelford & realised we were near Waitrose. Went in to waitrose for a drink & ended up having a delicious tikka masala curry & rice in their cafe - tasty! Joe swears blind he only had a few mouthfuls but mummy knows otherwise!!

Watched Bridget Jones no2

 

Tuesday 7th March

 

Very tired today. sue went into Cambridge shopping for tomorrow whilst Joe did maths with Maggie.

Nan & Deb visited in the afternoon & bought cream cakes - yummy!

Sue & Joe went out in search of  food but ended up doing a food shop & eating back at the hospital.

Joe tried to teach Sue how to play on the playstation in the teen room & continually thrashed her at 'some fighting game'.

Had a wet towel fight in the bathrooms!

 

Wednesday 8th MarchJOE & JESSIE'S 15TH BIRTHDAY!

 

Joe woke at 8.30am feeling very tired. Platelet transfusion up at 9.45am (takes 1/2 hr) - reaction - 2 x hive like lumps on head, 1 x on leg & rash on tummy/chest - puriton given - lumps went fairly slowly.

Dr Jo said (on Mike's instructions) that Joe would not be allowed home for his birthday as we had all hoped. Sue later spoke to Mike & told him that although we were all disappointed, she knew that in her heart of hearts Joe was not well enough to go out for the day & thanked him for making the decision for her.

 

Joe opened some presents - Superman pants given to him by his 'wife' Mel - Joe paraded out in the corridor, with pants over his trousers to show off to Carol the ward manager! (Carol says you can never have enough pants!?) 

 

Playworkers decorated Joe's room with '15' banners, came in & sang happy birthday & presented Joe with a voucher - nurses came in, sang & gave Joe a 'muffin & streamer cake'.

 

Started feeling unwell - cold, & shakey - couldn't get warm. Joe/ Sue kept getting nurses to check temperature - by early afternoon temperature hit 38.5! Two anti-biotics started (Vanc - I.V. over 2 hrs & Keft - push). Started to feel & look  much better.  Auntie & Emma bought up party food, drinks & lots of helium balloons! Dave, Nanny, Jess, Ellie & Ollie came up at 1pm laden with bags & bags of presents (so many that the cupboard had to be wheeled out into the corridor to make room for everything & everyone!)

Joe's face started looking red - felt OK just a very hot face. Angela (nurse) diagnosed Vanc reaction (also known as red man syndrome) - given more puriton!

Opened a few more presents & 'raced the grannies'. Joe too tired to open anymore & just wanted to watch Jess open hers! Joe very tired - left him with Dave for a sleep. Very hot & a bit sick. Joe now feeling very poorly & uncomfortable with lots of visitors so all went apart from Sue who was staying the night. Jess & Ellie very upset at seeing their brother so poorly. 

Joe more at ease now visitors had gone - comfortable & calmer.

Slept on & off all night.  

 

Thursday 9th March

 

Woke 9am - feeling much brighter today. Had 2 bowls readybrek!

Opened the rest of his presents - very pleased with everything.

Watched his DVD made by Lewis Stockwell of all his school friends - thought it was great - Joe laughed alot - especially at the greetings from everyone!

Joe had a nap & then did lots of chemistry with Robin.

Off pump @ 4pm - bath & a small walk. Joe very, very tired today. Another sleep from 6-7.30pm then another bowl of readybrek for tea!

The first of 3 blood transfusions started at 6pm, platelets also due later on along with anti-biotics.

 

Friday 10th March

 

Disturbed loads throughout the night with blood & platelet transfusions, I.V.s & obs. Did maths with Maggie for 1/2 hr & electronics work on computer.

Joe fed up being on pump till 5pm & not being able to get outside - also a bit fed up with Sue's company. Dave & Jess came up & we all went to the Pizza Hut for tea!

 

Saturday 11th March

 

Another disturbed night. Jack, Luke M, Bev & Nikki visited. On pump most of the day.

Watched Dodgeball in the evening with Dave.

 

Sunday 12th March

 

Disturbed night yet again. On pump till at least mid-afternoon. Dave came home @2pm as lots of visitors due. Luke & Kev, Jude, Greg & Ali in afternoon. JFP, Nun & Lou in evening complete with toad in the hole for Joe! Joe complaining of his uncles 'wind problem'!

Watched Mr Bean in the evening.

 

Monday 13th March

 

Denise (consultant) told us as Joe was so well, they would be stopping his anti-biotics today - Yippee!

Lots of school work & work with Maggie.

Carol (ward manager) told us very rude jokes!

Platelets given tonight - count AFTER transfusion = 53!

 

Tuesday 14th March

 

Sue left for home at 10am - hair appointment. Joe did lots of work with Maggie.

Paul, Adam & Hannah visited till 10.15pm! Sue stayed home to catch up on office tasks.

 

Wednesday 15th March

 

Sue returned at 11am. Walked to the cinema to see Date Movie - a lovely Spring day.

 

Thursday 16th March

 

Brought Joe home 12pm - 6pm - back for 7pm medication. Matt Cowling called in & stayed for tea.  Sat up till midnight chatting to Clare & Joe - our partners in 'C bay'.

 

Friday 17th March

 

Joe did lots of schoolwork on his own - Sue sat & wrote letters & paid a load of bills! Walked to the cinema to see 'The Pink Panther'. Emma came up for an hour till 5.30pm - Dave up for 6ish. Joe & Clare went home - Matt & Clare back  - Matt up to his usual comical standard!

Watched Matador film with Dave & a large bag of popcorn!

 

Saturday 18th March

 

Dave bought Joe home at 12pm. Jack came round for the afternoon (he broke lots of things & made lots of mess!!!) They played on the playstation - a draw on the fighting game but then Joe thrashed Jack at Moto GP!

Had roast beef for dinner then Dave took Joe back for 7pm medications.

Neutrofils are on their way up - 0.1 - yea hey!

Joe & Dave watched 'The Island' - Joe had the nibbles!!

 

Sunday 19th March

 

Awoke having had a much better sleep.

Matt dropped his PSP & made such a fuss that Dave & Joe laughed at him! (Picture of Matt available soon on the pictures tab!)

Dave bought Joe home again today. JFP, Nun & Lou took Joe back for 7pm - stayed on his own overnight as feeling 'back to normal'!

 

Monday 20th March

 

Sue arrived 10am - Joe slow to start today & needed bullying!! Did some maths but got fed up waiting for tools to work with!

Walked to cinema again today to see Tsotsi - sub-titled but a good film.

Went on the concourse for a coffee & a chat.

Sue went to Aunties as Joe is expecting visitors tonight - Nan, Carol, Kevin, Dale & Lauren.

Sue & Joe watched TV in the evening & both ate loads of chocolate!

 

Tuesday 21st March

 

Up at 8am - Joe 8.30. Had all lines changed today (into the Hickman) for hygiene purposes - done usually every Monday along with swabs).

Went into town to spend birthday vouchers/money. Joe bought 5 DVD's, Sue bought 4 (never bought a DVD for myself in my life before).

Came back from town to find we'd been moved again ( Matt had been moved too) back into 'A bay'  but this time we chose a window bed!

Still very hot & no air in this horrid bay!

Dave & Jess (complete with freshly cooked muffins from schools food tech. lesson) came up 6ish. Jess in the Teen room with Matt - eating muffins!

Dave went at 9ish. Joe & Matt built their 'cup tower' (picture available soon). Joe asked Sue to perform her party trick of picking up the cup from the floor - no hands allowed! Clare tried & tried - very, very nearly managed it. Clare took a cup home - her homework is to practice ready for her next in-stay!

 

Wednesday 22nd March

 

Sue up 7am - showered & breakfasted - Sue going home for an appointment at 10.45am today. Chivved Joe up, asked the Dr's to visit him first, nurses to take bloods, so as Joe could come home for the day with me. Left hospital at 9.45am - home at 10.25am!

Auntie Pat came to visit. Paul, Adam & Hannah took Joe back for 7.30pm.

Day 2 of neutrofils reading 0.4 - all hoping tomorrow they will be above this (based on last times) as Joe will be allowed home for another break (& in time for Mothers Day!)

 

Thursday 23rd March

 

Joe on his own today.

Auntie went to visit & nobody could find Joe - nurses thought he would probably be at the cinema as 'he was always at the cinema'.

Auntie phoned Sue to see where Joe was who said he would not leave the ward without telling someone. Auntie returned to the ward.

Mick the chef found Joe soaking in the bath! Phew! Panic over!

Jane, Sophie & Dan visited from school with yet more goodies!

Joe is in 'The Comet' again - third article on him! This time the press release is from 'The National Blood Service'.

Joe watched 'Green Street' with Matt.

Neutrofils still 0.4!but.....good news....the beetroot has started to grow!!!

 

Friday 24th March

 

Sue arrived at hospital 10am - Joe (& half the ward) still asleep. Did Maths & English in the morning. Matt, John,Joe & Sue went to the cinema late afternoon to see Inside Man.

Josh (another 15 year old boy) in middle bed went home - another young lad in his place. A terribly disturbed night - the second worse so far!

Neutrofils 0.6! Yes!

Asked Hannah (our night nurse) to take bloods before she went off shift at 7.30am so they could be tested early.

 

Saturday 25th March

 

Sue woke at 8am & started packed in anticipation of going home today! Results of bloods came back at 11am - 0.8!

Everyone so pleased that Joe will be home for 'Mothers Day' tomorrow.

Left for home at 12.30ish.

 

Sunday 26th March - Monday 3rd April - enjoying the freedom of being at home...............

 

Tuesday 4th April

 

Arrived back at Addenbrooks Paediatric Day Unit at 8.30am - (appointment not until 9am - school Easter holiday have started & the roads are clear) for Bone Marrow Aspirate & Lumbar Puncture with intrathetrical chemotherapy & hoping there would be a bed available so we could be admitted.

10.45am went into theatre, Sue allowed in till Joe was asleep - she wasn't very brave but Joe was back out at 11.03am - a very, very sleepy boy! Supposed to be laying flat for a couple of hours to aid recovery but by 12pm Joe was up eating 'Batchelors Supernoodles'!

By 2pm we knew there was no bed available so went back home awaiting a call tomorrow.

 

Wednesday 5th April

 

A chilled day at home. Lots of homework in the morning. Dave & the boys came home early to unload - (Joe supervising Ben & Ken!) - Joe made them tea & chatted in the spring sunshine - just like it used to be. A great bonding time for Dave & Joe. 

Had a call to say there would be a bed available but we needen't get in till after tea - so we milked it & arrived at 8pm!

Bad News: The bay we are in is 'G bay' - the only 4 bedded bay on the ward - opposite us is a 7 year old girl & next to us an american girl about 11.

Good News: Matt is also in the bay  & we are nearest to the bathrooms in case Joe gets diarrhoea - (I have been told to find the positive in every bad situation & this is my positive thought for being in this awful cramped bay!)

 

Thursday 6th April - course no 3 (strongest) x 5 days

 

Chemo eventually started at 12 midday. This course is called 'MACE' - Amsacrine x 1hr, Etoposide x 4hrs & Cytarabine x14hrs = 23hrs per day plus flushes inbetween each. We had resigned ourselves to the fact that Joe would be hooked up on his pump for the full 5 days but now as the chemo has started later than expected it will run into 6 days.

Very tired & feeling 'funny' - slept for 2hrs AM & 2hrs PM. Ate lunch OK, dinner was milk & crackers - sick. Slept OK.

 

Friday 7th April

 

Awake by 8am - up & washed. Ellie & the lovely Jack came up. Sue & Ellie went shopping & left Joe, Jack & Matt playing on their PSP's. On their return, the girls found the boys still in exactly the same position not having moved - this was 3 hours later! Dave & Jess came up at 7pm. Dave & Joe watched Green Street. Joe sick again.

 

Saturday 8th April - 

 

Quite a disturbed night - woke 8.30am. Felt rough all day - didn't eat - sick throughout the day.

Dave & Joe watched Gangs of New York before bed at 11pm.

 

Sunday 9th April - 

 

Slept quite well. Pretty poorly all day so given extra anti-sickness (cyclazine-makes Joe all relaxed & he talks very softly & says loving things!)

Temperature rising 38.4 - Dr Matt came to examine Joe & started anti-biotics & hydration. Tried to eat 3 cream crackers but was sick continually throughout the day again. Dr Matt came again before going off his shift - amongst the general things he checked Joe's hydration in his body & his blood gases - all OK.

(Meanwhile back at home, our dear friend Barry gave up his rare spare time doing the background research for Joe's 'wish' so Sue could have it ready to take in for Joe tomorrow).

 

Monday 10th April - Aunties 44th birthday!

 

A very disturbed night with anti-biotics, anti-sickness, hydration & chemo. Woke 9.30, eventually managed a slice of dry toast & water before attempting all morning medicines plus anti-fungal & more anti-sickness. Stayed in bed watching TV to avoid movement & sickness.

Consultants came round & were very pleased at Joe's responce to medications prescribed so promptly by Dr Matt but they will be keeping him on anti-biotics for a week as they didn't want a repeat performance of Joe back in PICU!

Still a little concerned that when Joe has a temperature, usually your blood pressure drops & your heart rate increases to compensate - Joe's doesn't - not even in the spell in PICU, therefore Mike & Dr Matt want a EKHO scan done on Joe's heart, just to illiminate any other probs - will sort this for the coming days.

Posted Joe's wish form. Auntie came up with Emma & Becks & birthday cakes - tasty!

Joe feeling a bit better throughout the day but still pretty yuck - by the evening he felt really sick again & was really down & depressed. Fed up feeling like this, being tied to the pump & desperately missing his mates.

Sue frustrated with not being active & able to exercise as usual so decided to go out running!  Out for about 40 minutes & did very well - considering! 

This time apart gave us both the space we needed!

 

Tuesday 11th April

 

Woke feeling much better - dry toast again for breakfast. Mandy came to visit & bought chocolate easter cakes which Joe actually fancied trying & managed to keep down.

Managed to get off pump for a couple of hours so went for a small walk & showed Joe & Matt my dream house (a big old detached 4/5 bedroomed property in need of total refurbishment due for demolition, making way for 17 new flats)! Back for 6.30 & Matt was due meds. They put Joe back on too - he was fedup at having to go back on so early.

Joe thought he fancied paella for dinner - when presented with it couldn't face it so ended up having baby sweet corn only. Watched 'Hitch' in the evening.

No sickness all day - 

 

Wednesday 12th April

 

Woke 9.30am - Sue feeling lousy so decided a run was the answer & went across the fields coming out in Long Road - partly jogging partly power walking! On her return, Joe had had a lovely soak in the bath/shave etc - expecting friends from school today - Jack, Josh G, Ellice & very importantly 'Gemma'. They were up by 12pm with lots of Easter Eggs in all sizes & a very choice 'boys' magazine!  

They all went to the park for 2 hrs & went in the teen room - a great tonic for Joe - thanks guys! 

Sue went home at 1pm to spend some time with the girls - Ellie especially was missing 'school holiday normality & her mum '.

Dave, Ellie & Nanny came up for 7pm whilst Sue spent some time with Jess.

 

EKHO scan done today - heart specialist Wilf told us Joe's heart is absolutely perfect - no abnormalities detected whatsoever! -Phew! Also, probably because he was so fit prior to the initial diagnosis, is why his heart rate does not increase when his blood pressure drops (apparantly fit athletes are the same!) & is also probably why he is recovering so well from the chemo. 

 

Thursday 13th April

 

Sue & Ellie back up for 10am - Joe & Ellie being 'mad' together - lovely to see! C2 very busy today - lots of visitors on the ward. Joe, Ellie & Matt spent time in the teen room. In the afternoon went to Bar Hill Tesco's - the biggest Tesco's we have ever seen - 2 well stocked floors - bought a few Easter treats & a promised Web-Cam.

Back to the ward - JFP, Nun & Lou visited complete with snacks.

Watched Waterloo Road then Joe fancied a bag of chips!

Had a fun night in the school room (all will be revealed soon - just be patient!)

Bed at 11.30pm

 

Friday 14th April

 

A very restless night - woke in the early hours to Joe being sick. Given I.V. anti-sicknesses. Ward sister said Joe may be able to have an additional drug - anti spazmodic (buscapan) to ease stomach cramps. Feeling terrible but sleeping on & off through the stomach cramps.

Consultant (Denise) came round & said because of symptoms perhaps we should be in a cubicle (Barrier Nursed) (Thank God - out of G-Bay!) Unsure of what is happening to Joe's insides at present so holding off buscapan - if he continues to be doubled up then he can have it.

(All cultures requested eg: sick, poo, wee & blood from Hickman line - just to see if the labs can grow any bugs or if it's just the chemo making Joe so unwell again).

At 2pm Joe managed to get a bath. Un-hooked from his line at 3.30pm & wanted some fresh air. Not wanting or daring to go too far, we sat out the back of the hospital in the spring sunshine. After 1/2 hr Joe was needing to lie flat & we went back to the ward & into 'I-bay' - even though barriered & isolated, this was a million times better for Joe's well-being.

Dave & Jess came up at 4pm. Joe still feeling & being so dreadfully sick, we asked for the buscapan to start - which did about 7pm. Left Joe in Dave's capable, caring hands. Sick again. No food at all today.

 

Saturday 15th April

 

A fairly good night - but woke with bad stomach cramps.  Marcus popped in for an hour in the afternoon.Felt ill all day with sickness again at 4.30pm. Ate a bread roll & 2 crackers & managed to keep it down.

Stomach cramps were so bad & the buscapan didn't seem to be doing a great deal so they administered morphine (just one dose which seemed to help.)

Watched 2 films with Dave. Bed 11pm.

 

Sunday 16th April - Easter Sunday

 

Good sleep - looking much better this morning. Managed some cereal & 1/2 a cup of tea.

Stomach still hurting but not as bad as yesterday.

 

Monday 17th April - Bank Holiday Monday

 

Toast & readybrek for breakfast - feeling much better. Sue, Jess & Ellie up for 12.30 with a picnic in anticipation that he would be off his pump early enough to eat outside - he wasn't  so we took the picnic to his room! Off pump at 3pm so we went in to Cambridge & to Wandlebury Park till 6pm when he had to be hooked up again.

Opened Easter presents (bought instead of eggs this year) then Dave, Jess & Ellie went home at 7.30pm.

Joe watched motorbike racing (taped from earlier) then Sue & Joe watched 'Zoolander' - rubbish!

Looking good - feeling OK.

Bed 12am!

 

Tuesday18th April

 

Joe woke 9am feeling OK.Up bathed & breakfasted as Jack & Luke M up at 11am for the day. As Joe is still barriered, the boys played PSP's whilst Joe was on his anti-biotics & then went out in the afternoon.

Matt may be allowed home for good today - he says he doesn't want to leave now as he's had to make this his home for the last 5 months - so he's going to go round & lick a few door handles to get an infection so as he can stay!!!MATT!!! 

Matt's neutrofils have dropped so he is not allowed home after all today!

Sue went home to spend the afternoon with Ellie.

Platelets due later this afternoon.

Dr Matt said they would be stopping anti-biotics as from today - yea - no more pump restrictions!

Sue back at 8.30pm - started to watch Bring the house down but it was so rubbish we turned it off!

 

Wednesday 19th April

 

Woke feeling very well but still upset tummy. Joe did school work with Maggie. Sue sat outside reading up on Bone Marrow Transplants as we have a meeting today at 5pm with Joe's consultant Mike.

MATT WENT HOME FOR GOOD!!!

Spent a nice afternoon walking round Wandlebury Park for 2  hours. Dave, Jess & Ellie came up for 5pm & had tea at the hospital.

The labs. have found a bug in Joe's blood cultures so back on I.V. anti-biotics at 6pm!!

Watched 'Intolerable Cruelty' - bit rubbish! - I think we've exhausted their DVD collection now........

Bed 10.30pm

 

Thursday 20th April

 

Up 9am bathed & breakfasted - English school work with Maggie. Hannah (ward sister) came & told us that Joe would be moved out of 'I bay' as he was not carrying any infections - just being treated for a line infection - & we would be back in 'G bay'! Sue absolutely distraught as we were nicely settled & private in 'I' - so fed up, Sue decided it was time to get off the hospital premises & go home for the afternoon.

Joe had his tooth repaired at the dentist & then went out in the garden to plant out his beetroot & put up his bean canes.

Had tea at home & back to hospital for 7pm meds. Hannah told us that although Joe had received 3 doses of anti-biotics for a line infection, they were not actually his results - so infact Joe did not have any kind of infection whatsoever - it must have just been the chemo making him so very poorly last weekend (like we said all along!) - therefore, no being hooked up to his pump tonight .

Went to find our new bed space - we are next to where we were before & have a window!

Sue cleaned 'their space' as per usual & went out for a power walk/run for 40 mins. whilst for nearly 2hrs Joe was on MSN (he tells me at one point he had 20 of his contacts up!) Bed 10.45pm

 

Friday 21st April

 

Sue awake & up at 8am - Joe was too but decided to stink in bed till 9.15am - Maggie due early today - 10am.

Sue went into Cambridge - back by 12pm. Both hoped to go home again today but waiting for blood results to see if the platelets (now on standing order) are needed today. Went for a 3 mile walk whilst waiting for the results - a lovely warm day - back at 2.45pm & still no blood results!!!

Saw Mike - he told us more good news relating to the donor - 'a male with the same CMV status as Joe's' - getting more positive news all the time!!!!! (Everybody has a CMV status - you are either negative or positive - Joe & his donor are both negative which should give less chance of donor rejection - fingers crossed!) Still no news on the age of the donor yet.

Eventually got blood counts about 5.30pm - Joe will have to have platelets tonight then blood transfusions (x3 bags) tomorrow starting at 6am - each bag takes 4 hours to transfuse so they agreed to do 2 bags then give him time off his pump & do the last bag at 6pm.

Platelets up at 6pm (given without puriton - not written on drugs chart) slight reaction - itchy head but subsided after a while.

Dave, Jess & Jude came up at 7pm & spent the evening with Joe.

 

Saturday 22nd April 

 

The lovely Faithful Jack went home from school yesterday & is too poorly to visit today - missing you loads!!! Get Well Soon sicknote Jack!

Joe started 1st of 3 bags of blood at 6.30am - woke Dave at 7.30 saying the line connecting the blood to Joe's lines had come apart & hence was spilling out! Once sorted, Joe went back to sleep for an  hour.

A lovely warm spring day - after 2 units of blood, Joe & Dave went out for a very long walk over the fields - back at 5.30pm & hooked up for the last unit.

Luke & Kev came up to visit in the evening. Ian bought tea up for Dave & Joe - chicken Kiev, roast potatoes & veggies!

Watched Pearl Harbour in the evening.

 

Sunday 23rd April

 

Up at 8.15am - nothing due via line today so hope to get out later. Went to 'Aunties' for the afternoon & for roast chicken dinner. Back for meds at 7pm.

 

Monday 24th April

 

Sue up 8am - Joe 9.00am. Joe english work with Maggie from 11am - 12.30pm. Emma came up at 11.30am till 1.30pm.

Sue & Joe walked to the cinema to see American Dreamz in the afternoon - bit rubbish considering Hugh Grant was the leading role.

Back for 4.30pm - Sue updated website - Joe played on playstation.

Sue left for home about 9.00pm - lots to sort at home. Joe very tired tonight.

 

Tuesday 25th April

 

Joe had a fantastic breakfast of scrambled eggs on toast made by Mick the chef - was still hungry so had cheese on toast after that - (well he does need to put weight on!) No school today as the teachers are on a course - yea hey!

Sue went into Joe's school for a meeting with Mr Wilson & then sorted lots at home.

Nan & Deb visiting at lunchtime. Adam, Paul & Hannah in the evening.

 

Wednesday 26th April

 

Sue arrived back at 9.45am to Joe still in bed watching TV! - that was soon sorted - up, bathed & breakfasted by 10.30 - Maggie the teacher due between 10.30 - 10.45am! Joe did english work with Maggie whilst Sue pottered.Dr Matt had a bet with Joe about his neutrofil level being 0.1 tomorrow - Joe says it will be 0.2 - they have bet a staggering 20p!

Went 'out' in the afternoon as it's a lovely spring day again - back for 6.30pm.

Joe just wanted to play on the playstation then they watched TV before bed at 11pm

 

Thursday 27th April

 

Sue up 8am - Joe 9am. Booked Maggie for early today so we can get 'out' later.(Trying to get out as much as we can before being isolated in Bristol). Doctors not round till 1.30pm - (Matt & Faith) - Joe's neutrofils are 0.1 so Joe paid Matt his winnings in 1 & 2p coins! The bet is on for tomorrow that the neutrofils will be 0.2 - if Matt loses he will give Joe all his change back!

Got 'out' at 1.45pm - back for 7pm meds. Linsey is our night nurse - Sue asked her for an early call as Joe has a CT scan on his chest tomorrow morning at 9.15am.

 

Friday 28th April

 

Sue up at 8am - Linsey having forgotten about the wake-up-call!

Went for the CT scan -  results not yet available. Had more bloods taken for 'tissue typing' - routine apparantly?! 

Spoke to Dr Amos - (lovely aftershave! - uuuummmmm!) re: Bristol - just waiting for Joe's counts to come up then we can hopefully have more concrete plans - go to Bristol, get Joe's marrow 'harvested' - (always want to say that in a countryfied accent for some strange reason!) & then on with TBI & then the 'transplant'.................................................

Maggie came early & done by 12pm so 'out' we came again to enjoy the sunshine whilst we can!

Back for 7pm meds. with Dave

 

Saturday 29th April

 

Dave went 'out' for the day with Joe - Jack visited & I think they went on every possible male clothes shop website there is - posers!

Also, Jack had programmed the TV to some strange channel with foreign music blaring -

I personally think they had been dancing in the room before I got home but they won't admit it!!!! 

Back for 7pm meds.

 

Sunday 30th April

 

Dave went 'out' again with Joe for the day at 12pm - back for 7pm meds. Joe looking & feeling fantastic. (Sorry - when Joe is well it does not make interesting reading!) lets hope you are bored often!!

 

Monday 1st May - Bank Holiday Monday (May Day)

 

On Dr.s ward round, Joe asked them to look at his line as it was a bit red & we need to keep a careful eye out for infection - swabs taken to culture.

Dave & Joe came home today for a while - Dave actually managed to get his tomato plants in at long last! JFP, Nun & Lou visited.

Sue back with Joe for 7pm meds. Joe's neutrofils have actually dropped today  so we won't be off to Bristol just yet!

Watched 'You've got mail' - Joe had the munchies big time! Bed 11ish.

 

Tuesday 2nd May

 

Joe up & done easily by 9am. Spent time designing a new 3D sign for the ward. Maggie working on his english with him at 10.30am- finished about 11.45pm. Went to Bar Hill Tescos - Joe was going to buy 'Lock, Stock & 2 Smoking Barrels' but we saw one of the nurses in there & she said we could borrow it - she'd bring it on Monday - (we have since found out we will hopefully be in Bristol then so if anyone has the film, please could Joe borrow it?) Swiftly provided by Shaun King - thanks Shaun! (Shows my efforts are not wasted & someone reads this site!!)

Went to 'Over' (the village where Sue's mum was born) to see some relatives - which was very emotional!Back for 7pm.

Sue met Dr.Matts daughter - a very tired but beautiful little girl called Bea 

Carol (ward manager) made us laugh by doing 'kick-ups' down the corridor - unbelieveable - but very funny!!!

Joe out chatting to the nurses - Kelly, Kelly, Kelly & Claire! (G.P. - they mean nothing compared to you!)

Decided to go out for a walk later but got sucked in by good TV for once. Dave phoned with news we had been waiting for about Bristol - (see about the transplant page).

Joe once again had big time munchies - he's actually eaten 4 meals today + alot of snacks!Egg on toast for breakfast x 3 slices, toasted cheese & ham s/w x 3 slices for lunch, a medium salad from the salad bar at 4pm then a chinese for tea at 7.30! Then - picked at crisps, chocolate & sweets in the evening - get it down yah!

 

Wednesday 3rd May

 

Sue bad nights sleep - woke at 6am ready to get up! Joe up & done by 9am. Started typing up his English work.

Spoke to Joe's consultant re: plans for Bristol + spoke of further tests he will be booked in for pre. Bristol. We are hoping to get home for at least one night before we have to go - Joe is desperate for a sleep in his own bed bless him - not too much to ask!!!

Saw Drs. (Matt & Faith) - desperate to get out today - a lovely warm day & Joe's 'wish' has arrived - a very snazzy laptop with lots of fancy tech. on!!! He is now like a dog with 2 tails & an even bigger smile on his face than usual!!

Jack (the one & only) called in to help set up the wireless internet connection & came without hesitation - sigh........

Dave & Ellie took Joe back. Ellie had a great time because Joe gave her a ride in a wheelchair up and down the corridor!

 

Thursday 4th May

 

Very basic report follows - due to time- will fill in more details as soon as able.

ECG trace on heart - all fine. Discharged from ward at 6pm - total surprise! Other tests booked for Joe for tomorrow at Addenbrooks.

Sickness & diarrhoea started around midnight. 4.30am took Joe to Lister Hospital for admission to the childrens ward to have IV anti-sickness & hydration. Bloods taken & all samples to cultures.

Joe, Sue & Dave no sleep at all.

 

Friday 5th May

 

Spiked a 38 temp. Antibiotics started - reaction due to higher doses administered - therefore stopped. Joe still Sick & Diarrhoea - sleeping on & off. All absolutely shattered!! Neutrofil reading made a massive jump for some unknown reason - totally strange for Joe - to re-do the counts.

Left Joe with Dave around 6pm. Joe sick again before bed.

HAPPY BIRTHDAY JO! - sorry, we'll have to give it a miss - gutted!

We do not know if we will be able to go to Bristol under these circumstances..........

 

Saturday 6th May

 

Joe feeling alot better today - managed to eat breakfast.

Drs. came round & said that his neutrofil reading was correct for yesterday - this big jump happens sometimes! Hopefully if all is OK tomorrow, Joe will be allowed home - the Drs will try & see Joe 1st tomorrow.

HAPPY BIRTHDAY LESLEY! sorry we're missing it - a weekend of parties & missing them both - gutted again!

 

Sunday 7th May

 

Joe is home! Dave our neighbour picked Joe up. Home around 11. Busy, Busy, Busy! Planning on leaving for Bristol late afternoon.  Unsure when next update will be but will do so as soon as possible.




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