Jacks Treatment Diary
Once Diagnosed on Thursday 19th February 2004, Jack was transferred to the Children's Oncology Ward where his treatment began that night, and he remained as an inpatient for seven days, being discharged home on Thursday 26th February. The following day was his 4th Birthday. (and his sister Katie's 2nd Birthday). He was discharged on a five week course of Steroids called Dexamethasone,(soon to be known as Grumpy Pills), and profylactic antibiotics for the weekends, plus two types of mouthwash - one to be used twice a day to prevent bacterial infections and one to be taken four times a day to prevent fungal infections!!!!!!! What a star he was as he took them without any fuss!.
His treatment as an outpatient then began:
Monday 1st March 2004 - Day beds for intravenous vincristine
Wednesday 3rd March 2004 - Day beds nil by mouth for a Lumbar Puncture to administer chemotherapy drugs into the spinal fluid plus a bone marrow aspirate. Met our Social Worker for the first time.
Monday 8th March 2004 - Intravenous Vincristine
Wednesday 10th March 2004 - Lumbar puncture bone marrow aspirate and an intramuscular injection of Peg Asparaginase that "really hurt"!!
Monday 15th March 2004 - Intravenous Vincristine
Monday 22nd March 2004 - Intravenous Vincristine
Thursday 25th March 2004 - Nil by mouth for Lumbar Puncture, bone marrow biospy for MRD test and insertion of "wiggly" or Hickman Line.
This is a flexible tube that is inserted under the skin of the chest wall, up to the main vessels in the neck and passed into the heart. The part of the line outside Jack's body was taped to his chest wall and then placed in a Jolly fabric bag tied around his neck.
Started reducing steroid dose ready to stop and started "Maintenance" treatment of daily oral chemotherapy to be given by us at home.
Wednesday 31st March 2004 - Nil by mouth for another Lumbar puncture. Gemma came to this one to meet and speak to the doctors and see what went on.
Sunday 4th April 2004 - admitted to Oncology Ward with high temperature. HB 7.5 so given a blood transfusion. Treated with antibiotics profylactically until blood cultures showed no infection. This weeks Lumbar Puncture cancelled as unwell. Discharged home on Thursday 8th April.
Monday 5th April 2004 - Met the Clic Nurse for the first time, will start home visits for blood counts once discharged from hospital.
Wednesday 14th April - Lumbar Puncture
Thursday 19th April 2004 - Intra-wiggly Vincristine plus 5 days of Steroids. Started additional Weekly oral chemotherapy on a Wednesday, the same drug as given into his spinal fluid, but to be omitted on weeks when Jack has his lumbar punctures.
Wednesday 5th May 2004 - Nil by mouth for Lumbar Puncture and bone marrow biopsy for MRD test.
Saturday 15th May 2004 - Admitted to Oncology Ward with high temperature and chest infection. Given intra-wiggly antibiotics. Missed vincristine on 17th May and Lumbar Puncture on 19th May as in-patient and too poorly. 
Discharged home on Wednesday 19th May.
Monday 24th May 2004 - Intra-wiggly Vincristine and 5 days of Dexamethasone. (Also known as Grumpy Pills !!!!!)
Wednesday 26th May 2004 - Lumbar Puncture
Monday 14th June 2004 - 7 Weeks of Delayed Intensification Started
Wednesday 16th June 2004 - Had a cardiac echocardiogram first thing to have a base recording of Jack's heart and its function as the drugs he will receive can affect the heart! This was followed by a Lumbar Puncture and Bone Marrow Biospy for the MRD test.
Thursday 17th June 2004 - Intra-wiggly Infusion of Doxorubicin on Day Bed Unit. Plus Vincristine and 5 days of Dexamethasone.
Saturday 19th June 2004 - Attended the oncology ward for the intramuscular injection of Peg Asparaginase
Thursday 24th June 2004 - Intra-wiggly Infusion of Doxorubicin and Vincristine.
Thursday 1st July 2004 - Intra-wiggly Doxorubicin and Vincristine with 5 days of Dexamethasone.
Monday 5th July 2004 - A week off to recover before starting stage 2 of the intensification treatment. It was possible Jack would need a break here to recover before starting stage 2, but he was fine and carried straight on with stage 2.
Monday 12th July 2004 - 09.30 am attended day beds for Intra-wiggly Cyclophos.
Tuesday 13th to Friday 16th July 2004 inclusive - attending day beds daily for 4 days at 09.30 am for Intra-wiggly Cytarabine. Also including a Lumbar Puncture on Wednesday 14th July.
Monday 19th to Thursday 22nd July 2004 - Intra-wiggly Cytarabine given Monday to Thursday.
Wednesday 21st July 2004 - Lumbar Puncture
Friday 17th July 2004 - Admitted to Oncology Ward with high temperature at 38.4. Hb 8.6 and Platelets 81. Started intra-wiggly antibiotics.
Saturday 18th July 2004 - Hb 7.0 and Platelets 22 !!! 
Given blood and platelet transfusions. After transfusions Hb 10.3, Platelets 121, but Neutrophils 0.55 ! Continued antibiotics and remained in hospital until discharged on Wednesday 28th July. Monitored at home with weekly blood tests to check counts.
Thursday 12th August 2004 - Attended Day Bed Out-Patient Clinic and started Maintenance treatment to be continued for rest of 3 year treatment programme. Intra-wiggly Vincristine and 5 days oral Dexamethasone.
Thursday 19th August 2004 - Out patient appointment forDave and Me with Jack's consultant to discuss whether or not to enter Jack into MRD Trial. See section on additional information.
Wednesday 8th September 2004 - Jack's First Day Of School
Thursday 9th September 2004 - Intra-wiggly Vincristine and 5 Days Dexamethasone.
Tuesday 14th September 2004 - Jack sent home from school at 10 am poorly.
Thursday 16th September 2004 - Jack admitted to Oncology ward with high temperature and swollen gland in his neck. On antibiotics.
Saturday 18th September 2004 - Discharged home on oral antibiotics.
Tuesday 21st September 2004 - Attended Day Beds for check up and OK.
Wednesday 22nd September 2004 - Outbreak of chicken pox in school. Jack off school. Check with Doctors, Jack's immunity very good but need to contact them for treatment if he develops any spots - he didn't.
Wednesday 29th September 2004 - Lumbar Puncture
Thursday 7th October 2004 - Intra-wiggly Vincristine and 5 days of Dex.
Saturday 16th October 2004 - Braved the odds and went to Cornwall for a week's holiday armed with drugs and Doctors letters "Just in case" of any problems!! (Not a terribly relaxing holiday!)
Thursday 4th November 2004 - Intra-Wiggly Vincristine and 5 days of Dex.
Wednesday 17th November 2004 - First of the three-monthly Lumbar Punctures and a Flu Vaccination.
Thursday 2nd December 2004 - Intra-Wiggly Vincristine and 5 days of Dex.
Friday 3rd December 2004 - Family outing to Bristol Old Vic Christmas Pantomime courtesy of Clic - Alice through the looking glass. Jack was mesmerised, and all thoroughly enjoyed the play - Thank You Clic xx.
Sunday 12th December 2004 - Attended the Hop, Skip and Jump Christmas Party - games, food and presents for all the children, they had a fab time. Thank you xx.
Friday 31st December 2004 - Due Intra-Wiggly Vincristine today. On getting Jack dressed, discovered dried blood spots on his vest. On questioning admitted he and Katie had taken Wiggly's nose off last night in bed - they had been watching a video together in Jack's bed. On further questioning Jack said Katie had bitten his line, but we couldn't see anything. Informed the nursing staff on Day Beds as blood needed to be taken to check for infection and the "nose" replaced prior to giving any drugs. Blood was obtained, but when flushed, the line leaked and a "Bite" hole was detected.!!!!!!!!!!!AAAAARG!!!!!! Although we had been told this was possible, no-one had ever known it be done!
The line was clamped then a special repair kit was used to make a repair and the line wrapped and left clamped and taped to Jack's chest for 24hours for the silicone repair to harden. We had to return the following day to have it checked.
On returning, the line was checked and flushed perfectly. Jack's blood had grown some bacteria however, so we then had to attend the hospital every day for 10 days of Intra-Wiggly line infection specific antibiotics. This turned into a 5 hour round trip for us every day, but Jack and the girls handled it really well.
Thursday 6th January 2005 - Intra-Wiggly Vincristine and 5 days Steroids.
Thursday 13th January 2005 - Day Beds for repeat blood cultures to check no problems from repaired line, full bood count, CRP and Liver Function Tests. Also due 2nd flu jab which was given while Jack watched without making a sound, he just held one of the nurse's hands and sat on Dad's lap!!! The nurses were astounded at his bravery, and he was treated to a dip into the treasure chest where he chose a batman car!
We picked up a pushchair from the physio department as Jack's is now too small for him and he is unable to walk any distance yet. He said it is like sitting on "his throne"!!!
Tuesday 25th January 2005 - High temperature today. Girls all have a cough and cold. Seen on Day Beds. Bloods taken and results same as yesterday's weekly count. Probably viral, allowed home but to return if any worse/problems.
Thursday 3rd February 2005 - Intra-wiggly Vincristine and 5 days Steroids.
Wednesday 9th February 2005 - Unwell over the day, Temp creeping up. 8.35pm Temp 38.2 - 38.3. Taken to A&E, bloods taken and Neutrophils above 1.0 and CRP<10. Allowed home & to observe Jack.
Saturday 12th February 2005 - Temp 38.8, admitted to ward from A&E. Coughing +++, in sideroom. IV antibiotics. Allowed home Wednesday 16th February. Lumbar Puncture today cancelled until next Wednesday.
Wednesday 23rd February 2005 - Lumbar Puncture
Thursday 3rd March 2005 - Intra-wiggly Vincristine and 5 days Steroids.
Thursday 31st March 2005 - Intra-wiggly Vincristine and 5 days of Steroids.
Thursday 28th April 2005 - Intra-wiggly Vincristine and 5 days of Steroids.
Friday 29th April 2005 - Jack complaining of earache but no temperature. Taken in to Day Beds, blood cultures and throat swab taken as ears slightly red and signs of tonsillitis. Bloods OK, Home with 10 days oral Penicillin. To phone in a week to see if throat swab cultured anything.
Wednesday 4th May 2005 - Jack Temperature 38.5. Seen on Day Beds. Bloods taken and OK. Definite ear infection, Penicillin stopped and Clarithromycin started. Allowed home. Phone Day Beds daily to check on Jack's condition.
Thursday 5th May 2005 - Temp 37.5, seems OK in self. OK to stay home unless Jack worsens.
Friday 6th May 2005 - Temperature now normal, Jack back to normal. Doctor on Day Beds happy. To attend next Wednesday for Lumbar Puncture as planned or phone if further problems.
Monday 9th May 2005 - Blood result Neutrophils 0.61.
Tuesday 10th May 2005 - Came in from playing in the garden around 6.15 pm, feeling tired and hot. Temp 37.8. Checked around 8.30 pm Temp 38.2. Re-checked at 9.30 pm and 38.2 - phoned Oncology ward on the way to A&E. 10.35pm seen in A&E, bloods taken, obs recorded, seen by doctor, antibiotics and calpol given and admitted to ward. Temp 38.8.
Wednesday 12th May 2005 - Lumbar puncture cancelled as too unwell.
Friday 13th May 2005 - Seen by Jack's consultant on the ward round. Temp remains above 38 C despite intra-wiggly antibiotics. ?line infection, further blood cultures taken and antibiotics changed. Jack up and about a lot of the time and feeling quite bright.
Saturday 14th May 2005 - Allowed to take Jack out to McDonalds between antibiotic doses. Still quite bright despite temperature. Sputum specimen sent off. Dave brought the girls in to visit this evening for a short while.
Sunday 15th May 2005 - Seen by Weekend consultant. To try stopping antibiotics for 24 hours and observe Jack as blood cultures not grown any bacteria. Neutrophil count up, allowed home for a couple of hours until next dose of antibiotics would be due. Got home 11 am, and watched a torrential hailstorm - see pictures. Temp 37.8, Jack fell asleep on the sofa and woke 15 minutes before leaving to return to hospital and had a quick ride on his tractor. Very sleepy when back in hospital. Fell asleep from 5 pm to 9 am, waking a couple of times in the night for a drink or observations by nurses.
Monday 16th May 2005 - Ward round with Jack's consultant. If Temp goes up again for more blood cultures and to start Teicoplanin, otherwise continue off antibiotics. 2pm Temp 38.4 - bloods cultured, started Teicoplanin and ceftioxane antibiotics. Skin swab taken from Jack's line site.
Tuesday 17th May 2005 - Ward round - 2 consultants - unsure of cause of Jack's current illness. To start another oral antibiotic and review in 24 hours. All results negative so far. ? a viral illness.
Wednesday 18th May 2005 - Still unsure of cause of illness. Blood sent for CMV, glandular fever and some other viral infections. To continue oral antibiotic and if no better after the weekend, to investigate for fungal infections. Possibly for a CT of his chest if becomes more symptomatic. Not likely to be a superbug as too "well" and it would have cultured more quickly. For urine sample and continue observations. Lumbar Punture due today but cancelled as not well enough.
Friday 20th May 2005 - Seen by 4 consultants and 2 registrars on ward round. Still unsure of illness. ??antibiotic fever from all the antibiotics, ?? relapse on treatment, ?something else.!!!! For abdominal ultrasound and ?x-ray. To stop antibiotics for a while again and see what happens. A nurse suggested an anti sickness tablet as ?feeling sick from antibiotics - Jack had been complaining of his stomach "feeling full" and had eaten very little for days, and when feeling unwell tends to go to sleep. Given Maxalon - 20mins later, feeling much better and awake and off the bed!!! Went for abdominal ultrasound. Back on ward and awake and alert for first time in days.
Saturday 21st May 2005 - Much better today and discharged home on Maxalon for a couple of days. For Lumbar Puncture Wednesday.
Wednesday 25th May 2005 - Lumbar Puncture
Thursday 26th May 2005 - Phoned by Jack's consultant. Lumbar Puncture shows white cells present. ?Meningitis, ??Relapseof disease. For repeat Lumbar Puncture in 3 weeks. Won't know until then!!!!!
Thursday 9th June 2005 - Intra-wiggly Vincristine and 5 days of steroids.
Wednesday 22nd June 2005 - Lumbar Puncture.
Thursday 23rd June 2005 -- Lumbar Puncture clear which means it is not relapse, ONLY MENINGITIS!!!!! Hooray!!!!!We stopped dancing round the kitchen jumping for joy and asked ourselves how many parents would be jumping for joy that their child has only had meningitis!??
Thursday 7th July 2005 - Intra-wiggly Vincristine and 5 days Steroids.
Friday 22nd July 2005 - Neutropenic and high temperature. Rash around line site on skin. Admitted to hospital for antibiotics. (Gemma's birthday yesterday and last day of school before summer holidays today !!!)
Thursday 28th July 2005 - Discharged from hospital. Impetigo around line site. We are to change dressing twice a day and apply special cream to treat skin infection .
Thursday 4th August 2005 - Intra-wiggly Vincristine and 5 days of Steroids. Continue applying cream twice a day to line site until rash clears up.
Wednesday 17th August 2005 - Lumbar Puncture to give spinal chemotherapy. Still struggling to clear rash around line site completely, keeps coming back once we stop using cream for a day or two, so continuing to treat twice daily.
Thursday 1st September 2005 - Intra-wiggly Vincristine and 5 days steroids. Still treating line site.
Thursday 29th September 2005 - Intra-wiggly Vincristine and 5 days Steroids. Still treating line site, but four times a day now as skin very inflamed.
Thursday 27th October 2005 - This weeks Vincristine postponed to next week to allow us to go on holiday for a week to Cornwall.
Sunday 30th October 2005 - Returned from holiday. Jack caught his line while playing with his sisters and a couple of hours later it fell out!!!!! contacted hospital - no bleeding or concerns. To attend Day Beds tomorrow for a check up.
Monday 31st October 2005 - Attended Day Beds with Wiggly cleaned, sterilised and in his bag!!!! To continue applying cream until exit site clears up. To have next treatment via butterfly in the back of his hand with Magic cream and to have weekly bloods taken from a finger prick. Jack happy with this plan as he no longer has to worry about knocking his wiggly and can lie down in a deep bath again, once his exit site is healed.
Thursday 3rd November 2005 - Intravenous Vincristine and 5 days of steroids. Magic cream used on Jack's hand prior to giving Chemo.
Wednesday 16th November 2005 - Lumbar Puncture. Jack chose to be put to sleep using gas which he quite happily breathed while sitting on my lap holding his noo noo.
For the rest of his treatment, Jack followed the above regime of having his weekly blood test taken from a finger prick, magic cream on the back of his hand for a butterfly needle to be used to give his monthly Chemotherapy and gas sat on our laps, every three months, for his Lumbar Punctures. Jack would ALWAYS watch exactly what was being done to him and sometimes talk the doctors through what they were doing and needed to do next!!! They never seemed to mind, in fact, they were often amazed at his bravery and attitude towards it all.
Thursday 1st December 2005 - Intravenous Vincristine and 5 days of Steroids.
Wednesday 7th December 2005 - Family outing to Old Vic Christmas Pantomime, (Aladdin), courtesy of ClicSargent. Thank You ClicSargent xx.
Sunday 11th December 2005 - Hop, Skip and Jump Christmas Party. Again, presents for all the children and a thoroughly enjoyable time had by all. Thank you xx.
Thursday 29th December 2005 - Intravenous Vincristine and 5 days of Steroids.
Thursday 5th January 2005 - Mum and dad had an appointment with Jack's consultant to discuss treatment so far - all going to plan.
Thursday 26th January 2006 - Intravenous Vincristine and 5 days of Steroids.
Monday 6th February 2006 - Jack Neutropenic. Developed high temperature with a cold. Admitted to Oncology ward for antibiotics.
Wednesday 8th February 2006 - Jack's Lumbar Puncture cancelled as too poorly. Grandma came to sit with Jack for Mum and Dad to attend a Parent's evening at Sophie's school.
Thursday 9th February 2006 - Jack well enough to be discharged home.
Thursday 23rd February 2006 - Intravenous Vincristine and 5 days of steroids.
Wednesday 15th March 2006 - Lumbar Puncture.
Thursday 23rd March 2006 - Intravenous Vincristine and 5 days of Steroids.
Thursday 20th April 2006 - This weeks Chemo postponed as all the family (except Dad), suffering with suspected Norwalk-type virus.
Thursday 27th April 2006 - Intravenous Vincristine and 5 days of steroids.
Wednesday 10th May 2006 - Lumbar Puncture.
Thursday 25th May 2006 - Intravenous Vincristine and 5 days of Steroids.
Thursday 8th June 2006 - Just about to dish up family barbecue when Jack fell over in the utility room and fractured his arm. Taken to A&E by ambulance. Kept in overnight and to theatre following day to have both bones of his forearm plated due to nature of the breaks. Allowed home later that day. To return in 2 weeks to have lightweight permanent plaster applied.
Thursday 22nd June 2006 - 09.00 am attended the fracture clinic in one hospital in the city. Seen by doctors and had new plaster applied, then drove across city to usual hospital for Chemo. Intravenous Vincristine and 5 days of Steroids.
Thursday 20th July 2006 - 10.30 am - Intravenous Vincristine and 5 days Steroids. 1.25 pm across city - Fracture Clinic appointment. Seen by Doctors and plaster removed. Arm/bones healing well.
Wednesday 9th August 2006 - Lumbar Puncture.
Thursday 17th August 2006 - Intravenous Vincristine and 5 days of Steroids.
Thursday 14th September 2006 - Intravenous Vincristine and 5 days of Steroids.
Thursday 12th October 2006 - Intravenous Vincristine and 5 days of Steroids.
Wednesday 25th October 2006 - Lumbar Puncture.
Thursday 9th November 2006 - Fracture Clinic - All looks OK.
Friday 10th November 2006 - Intravenous Vincristine and 5 days of Steroids.
Thursday 7th December 2006 - Intravenous Vincristine and 5 days of Steroids.
Friday 8th December 2006 - Annual Family outing to Bristol Old Vic Christmas Play - The Three Musketeers. Thank you ClicSargent xx.
Saturday 9th December 2006 - Attended our health centre for Jack to have his annual flu jab.
Sunday 10th December 2006 - Hop, Skip and Jump Christmas Party - only Jack and Katie went this year as Sophie and Gemma away. Fun and games plus food and presents for all. Thank you xx
Friday 5th January 2007 - Intravenous Vincristine and 5 days of Steroids.
Monday 15th January 2007 - Jack poorly with sore throat. Seen on Day Beds and prescribed oral antibiotics. Not neutropenic and as no Wiggly doesn't need to be admitted. To return if becomes worse.
Thursday 1st February 2007 - Intravenous Vincristine and 5 days of Steroids.
Monday 12th February 2007 - Jack seen on Day Beds as raised temperature and cold/viral illness. Bloods taken to check for infection and given oral antibiotics. For review on Wednesday when due L.P.
Wednesday 14th February 2007 - Seen on Day Beds for Lumbar Puncture. Seems much better though feeling sick from antibiotics. Stopped these as obviously viral illness.
Tuesday 27th February 2007 - Happy Birthday Jack and Katie XXX
Thursday 1st March 2007 - Intravenous Vincristine and 5 days of Steroids.
Thursday 15th March 2007 - Fracture Clinic appointment. Booked to have plates removed on 6th December 2007.
Friday 30th March 2007 - Intravenous Vincristine and 5 days of Steroids.
Thursday 26th April 2007 - Intravenous Vincristine and 5 days of Steroids.
Wednesday 16th May 2007 - TODAY JACK TAKES HIS FINAL METHOTREXATE TABLETS.!!! 
Monday 21st May 2007 - COUNTDOWN TO THE END OF JACK'S TREATMENT ........10 DAYS TO GO!! 
Wednesday 23rd May 2007 - DAY 8 - JACK'S LAST LUMBAR PUNCTURE AND BONE MARROW ASPIRATE TO CHECK HIS MRD FOR THE TRIAL. 
Thursday 24th May 2007 - DAY 7 - JACK'S LAST INTRAVENOUS VINCRISTINE AND 5 DAYS OF STEROIDS.
Saturday 26th May 2007 - Home visit by photographer from local paper as doing an article on our Race for Life fundraising efforts for next weeks paper.
Tuesday 29th May 2007 - JACK'S LAST DOSE OF STEROIDS!!!!!! GOODBYE GRUMPY PILLS !!!
Wednesday 30th May 2007 - ONE DAY TO GO !!!!! 
Thursday 31st May 2007 - TODAY JACK TAKES HIS VERY LAST MERCAPTOPURINE TABLETS !!!!! YIPPEEE!!! GOODBYE CHEMOTHERAPY!!!!!
Now Jack only has to take preventative antibiotics on weekends for the next 3 months, then they stop.
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