C/O 33 Jubilee Road
Kingswood
Bristol
BS15 4XG
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Jack Bradley B's Parents/Guardians

Paula and Rob

Jack Bradley B's Siblings

Joseph (Joe) aged 12 (6/1995) likes football, trampoline, music, computer/playstation games, reading (mainly comics and joke books), animals (dogs)

Jack Bradley B's Interests

Playing with his brother, computer/playstation games, watching DVDs (Mr Bean, Pirates of the Caribbean), trampoline, football, colouring, music, telling jokes and making people laugh! Dr Who and Top Gear, The Simpsons, Lego.

Jack Bradley B's Favourite Colour

Red

Is Jack Bradley B able to read?

Yes

Is Jack Bradley B able to use hands?

Yes

Is Jack Bradley B visually/hearing impaired?

No

Does Jack Bradley B suffer from any developmental delay?

No

Jacks Nickname is

Captain Jack

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Story updated by Jack's family, April 2008

In November 2003 Jack, aged 4, was diagnosed with Leukaemia. He showed signs of both ALL and AML and after further tests was treated with the AML protocol. Following his initial course of chemo his parents were told that he had not reached remission, the Leukaemia was more aggressive than first thought and that ultimately Jack would require a bone marrow transplant. He underwent a second stronger course of chemo which got him into partial remission and tests showed that his brother Joe aged 8 was a match, so Jack had a third course of chemo to get him ready for his transplant which took place in February 2004. Within one month Jack was able to go home and spent the next six months growing stronger, enough to go back to school and start leading a normal life.

For two and half years Jack remained well, him and his family went on lots of holidays to France, Scotland, skiing and Disneyland in Florida. They had lots of fun times and Jacks sense of humour became cheekier and funnier and he made lots of friends at school as well. 

In August 06 Jack started having problems with his knees, originally thought to be an orthopaedic problem. However, following a bone marrow aspirate, his parents received the devastating news that Jack had relapsed. Again, he showed signs of both ALL and AML, and so he began an aggressive course of chemo to try and get him in remission so he could go onto to have a second bone marrow transplant, this time from an unrelated donor. Again the first course of chemo didn’t work so Jack underwent a different course of chemo following which he developed a life threatening fungal infection on his right lung. Jack was in hospital for 6 weeks where he was receiving drugs 24/7 just to try and get control over the lung infection. Miraculously he pulled through and went on to find out that he was in remission, however the lung infection had left him too weak to undergo the planned bone marrow transplant, so Jack was given a short course of chemo and his brother Joe donated more blood.

For just over a year Jack underwent many regular bone marrow aspirates to check if he was still in remission. Then in February 2008 a bone marrow aspirate showed that Jack had relapsed. Before he started chemo for a 3rd time, Jack was able to enjoy his 9th birthday at home with his family and some school friends. Then on 9th March 08 Jack was admitted to hospital to start treatment once more. He has been in hospital for almost 4 weeks now and if the next bone marrow aspirate shows that Jack is in remission he will be going forward with a 2nd bone marrow transplant.

Jack's parents are so proud of him, he is being an extremely brave and patient boy and deserves huge hugs and kisses (even if he thinks he is getting too old for them - 9 going on 19

Update 30th April 2008

We have managed to get a weekend away in Cornwall as Jack is now on an oral anti-fungal rather than having it through his lines 3 times a week. It was great being away - the forecast was rain but it turned out to be sunny and warm and as Mevagissey was quiet it meant we were able to eat out without worrying that there would be too many people around. It's one of our favourite places to go and we spent a week there for New Year, so we know it well now and the boys love it there. We even managed to rent a cottage at the last minute which allowed pets, so Ruby the dog came too! Henry (Jack's friend from Ward 34) and his family came to spend the day. The boys and Scarlet (Henry's sister) did some crabbing, then we spent the afternoon on the beach followed by a couple of nice cold beverages in The Sharksfin overlooking Mevagissey harbour - bliss!

Jack is now getting some home tutoring which he complains about but enjoys really. Rob and I took him to Cheddar today as he wanted to see the caves and buy a toy! 

During our visit, I had a call from David, medical co-ordinator at the hospital, to confirm that Jack's donor will be going into hospital on 23 May, which will also be the day Jack receives his transplant. Before this Jack will need to have conditioning chemotherapy which will start on the 15^th, so we have a couple of weeks at home in between various tests. Tomorrow morning we have to be at the dental hospital for 8.30am followed by daybeds for various blood tests and then a lung and respiratory test at 1.30pm. We will also need to catch up with David to confirm other appointments. It is also provisionally planned to harvest Jack's own bone marrow next Tuesday and at the same time they will carry out the test to check that he is still in remission. Jack may need a blood transfusion after this and it may also mean a night in hospital depending on what time he goes to theatre and how well he is on recovery. 

So it’s full steam ahead now we have a date, but we are hoping that we may get a day at the end of next week when we can take the boys to Legoland, as Jack is really keen to go there again and thought he wouldn't be able to go until he is better.

Update 18th April 2008

Jack had his bone marrow aspirate on Wednesday and we found out yesterday that he is in remission, which is the result we were hoping for, so that's Jack's first hurdle over with. We spoke to Michelle, Jack's consultant, who confirmed that there is a 23 year old male donor lined up who is on the Anthony Nolan Trust which means he is living in the UK. All we hope for now is that he hasn't had any piercings or tattoos done recently! Michelle has decided on this option rather than the cord blood, as this means that they can go back to the donor should they need to, but with the cord blood once they used that then that would be it. 

The donor is a 9/10 match which is good but Jack is CMV+ and the donor is CMV-. CMV is a virus that 80% of the population get without even knowing it. Jack's CMV level will be tested regularly so that if he starts to show signs of the virus he will be given drugs to deal with it, as the donor marrow won't have any antibodies to fight it. Obviously if we had a few donors to choose from then they would have used a donor who was CMV+ but we don't have that option. 

We have a provisional date of 16th May for the transplant. This means Jack will be admitted to the bone marrow transplant unit on the 8th to start his conditioning. This is a course of intensive chemo to completely wipe out all his bone marrow, which is why he will then have to go into isolation, as he will have no functioning immune system for quite some time.

Before all this starts though, Jack will need to have a 'work up' which means CT scan on his lungs, echo on his heart, x-rays, visit to the dental hospital and they will also 'harvest' his own bone marrow now that he is in remission which will be the same procedure as Joe underwent when he was Jack's donor. This is just in case Jack completely rejects the donor's bone marrow and he will need to have his own back - something we don't want to think too much about. Once there is a definite date for the transplant then we will have a long meeting with Michelle to run through everything, this will include all the side effects of the treatment which from what I remember last time was scary. 

I've been asked to consider doing a video diary of Jack going through his time on the bone marrow unit as part of a week long report that HTV are running in June or July on the NHS, as it’s 60 years this Summer since it began and as the bone marrow unit at the Children’s' hospital is seen as one of the best in the world, they want to cover a story of one of their patients. Part of me wants to do it so long as they portray Jack's story correctly, but I know that it’s going to be a difficult time so I think once we have the meeting with Michelle and I get to speak to HTV as well then I can make my mind up. Jack isn't keen although he originally thought it would mean someone coming in and filming him when he's not going be at his best, but I've explained that it’s not going to be intrusive at all, I'll just be given a video camera to use whenever I want to. It just helps towards raising awareness of what a bone marrow transplant involves and to hopefully get more people to register as donors. 

For now though Jack is doing brilliantly, his neutrophils are up to 0.73 which is the highest they've been in over a month. He looks well, is eating well and is in good spirits. Joe is back at school next week so Jack is going to be bored but I've told Jack that I am going to try and sort out a home teacher on Monday - much to his disgust!

Update 13th April 2008

Jack has been doing really well over the past week, he continued on overnight leave until Wednesday when we were officially discharged from the ward. His neutrophils hadn't quite reached the level that our consultant wanted to see, but as all his other blood counts were rising she was confident that his neutrophils would come up, plus he was so well in himself, eating and drinking and noticeably putting weight back on.

So, for the first time in about 5 weeks, we had a day off from being in hospital. Jack still needs to go into daybeds 3 times a week for his antifungal drug and for bloods to be taken. On Friday his neutrophils had risen from 0.13 on Wednesday to 0.44, almost half of 1 - doesn't seem much but it was enough to build our hopes up that his immune system is on the up. We are still unable to take him anywhere unless it’s outside as places are so busy especially with it being the school holidays. He is very much enjoying being home though and Joe is glad to have us all at home as well. At bedtime last night Jack said that when he's at home he just feels normal and it’s like he doesn't have leukaemia. He said that when he has his transplant, it’s like digging up an old plant that is no longer alive and planting a new one which will work, which is how he sees his leukaemia. His bloods not working so he needs some new blood. 

We've had the weekend at home which has been great and we are back in tomorrow for bloods and antifungal. Jack's bone marrow aspirate is either going to be Wednesday or Friday - fingers crossed for that…

Thank you to Joe and Jack's post pals for sending cards and gifts. Helen, I'm afraid they had no restraint with the dated presents you sent, they were all opened within 5 minutes!

Update 5th April 2008

We have managed to get home on the afternoon with Jack for the last week. He remained on antibiotics and developed some nasty mouth ulcers which were treated with a mouth rinse and spray - mouth ulcers are yet another nasty side effect of chemo. On Thursday it was decided to stop the antibiotics as nothing had come back on his line cultures, his CRP was coming down, his temperature was stable and he was much better in himself. 

He asked the Doctors on Thursday if he would be able to sleep at home, so last night was his first night home in 4 weeks. His neutrophils are still zero, but looking at the rest of his blood counts, they don't think it will be too long before we see something happening and as he is so well in himself, they were happy for him to have 'overnight leave'. This means we're not actually discharged and they keep his bed in the hospital in case he becomes unwell at home and we have to take him back in. This way we don't have to go through the procedure of going through A&E and antibiotics can be administered much quicker. So he slept in with me and, just like the nurses, I set my alarm so that I could check his temperature every 4 hours, although I never needed it as I was awake anyway. I think I'm now programmed for 4 hourly obs! 

He is still sleeping but as we have to take Jack back into hospital mid morning for bloods to be taken and a review by a Doctor, we had better get him up as Jack thinks he is a teenager and just wants to lie in bed all morning and takes ages to get going!

Jack has really enjoyed being back at home this week, we've taken the dog for a couple of walks (only short!) and he has been out in the garden bouncing on the trampoline and playing football with Joe - you'd never think that 3 weeks ago he had undergone some pretty heavy chemo - he is just unbelievable. Rob has had to shave his hair as it is now falling out pretty quickly. It did bother him that he was going to lose his hair again but he has some pretty wicked beanies and baseball caps and when he has a hat on he just looks like any other normal 9 year old - or a dude as Jack likes to think! 

Our consultant, Michelle, mentioned yesterday that they may do the bone marrow aspirate at the end of next week to see if Jack is in remission. It’s not something we are looking forward to but has to be done to see how well this round of chemo has worked. Keep everything crossed for us.

Update 30th March 2008

Well Jack has been in hospital now for 3 weeks and there are still zero neutrophils, but it's paid off so far as he has had time to recover from the chemo and his eating and drinking improved so much he put a kilo back on within a week. 

As he had been doing so well and his tummy had settled down we agreed with the Doctors that we would start taking Jack out for a little while each day. We took him to the play centre session on Wednesday morning (they shut the main playroom to the rest of the hospital and open it for oncology kids) which meant he was able to play outside in the garden area. He felt tired after but it was good for him to be out of his room for an hour. 

On Thursday we met my dad and Ruby over at Blaise so he could see the dog as he has really missed her. We stayed for a couple of hours and Jack managed to eat two sausage baps!

Friday wasn't such a good day as Jack's CRP level (infection indicator in the blood) was 10 (needs to be less) which indicated that he could be developing an infection. He was also really tired and couldn't be bothered to do anything, although this could have been caused by his Hb level dropping (bit of the blood that carries oxygen around the body). Then his temperature started going up and down so we had to monitor it regularly because if it went to 38 he would have to start a course of antibiotics.   

On saturday Joe was able to come in and see Jack as his cold/cough has gone. Jack was really pleased to see him but he was feeling pretty much the same as Friday. His CRP level had increased to 18 and his Hb level to 7, so again we monitored his temperature all day and the Doctor ordered some blood for a transfusion. The transfusion should have been done during Saturday as it takes 4 hours and it would then mean that Jack should feel well enough to be able to come home for a few hours on Sunday if his temperature stayed. Everything seems to go to pot during the weekends though and the blood never arrived in time for the day shift to get it going. They never give transfusions during the night in case the patient has a bad reaction and so Rob was promised that it would be started at 8am this morning. So, at 8am this morning, Rob went to speak to Jack's allocated nurse to see where the blood was. She found out that it was still at the BRI so sent a porter over straight away to get it and got it going by 8.30am.

Bloods are always taken from patients at 6am so that results are back in time for the Doctors to do their rounds. This morning Jack's results weren't so they were unable to check his Hb level before his transfusion started. When it did finally come back, his Hb level was above 8, so rather than him having 2 bags he only had 1 which meant he was finished much earlier than planned. His CRP level is still up but as he felt much better in himself and his temperature has remained down, he has been able come home for a few hours. He is now upstairs playing with Joe and every now and then I hear a cheer as one of them wins whatever Xbox game they are on - happy days! 

I'm going back in with him tonight but fingers crossed he may be able to come home for a few hours tomorrow. The only way to cope with all of this is to live day by day...

Jack has been extremely patient to have coped with being confined to a hospital cubicle for 3 weeks but he is extremely happy to be at home, even if only for a few hours.

Update 20th March 2008

It's been an extremely long 12 days since Jack was first admitted onto the ward. Jack developed a high temperature within the first couple of days into treatment and was very low, but since the 5 day course ended last Thursday, he has improved a little bit each day and for the last couple of days we've got the old Jack back.

We were given the impression over the weekend that Jack was going to be allowed home on Monday, but by then Jack had zero white blood cells and neutrophils, which means no immunity to anything. We were strongly advised by the new haematology consultant (who has been covering the ward this week) for Jack to remain in hospital as the chemo he had is an aggressive treatment and because he has received previous chemotherapy treatment and a bone marrow transplant which means his immune system has been compromised. Rob and I completely agreed with her decision, as past experience has shown that once there are zero neutrophils Jack will develop a high temperature and we then have to get him into hospital within an hour and on antibiotics. The trouble is that when you have to go via A&E in the middle of the night it can be a minimum of 3 hours before they start antibiotics, which in Jack's case at the moment could be too long and so we are more than happy for Jack to stay put. It is frustrating for him though as he is now feeling a lot better, but we are doing our best to keep him occupied and he is spending an hour with a teacher each morning and gives the play lady instructions of what he would like her to bring him to do during his time with her. 

His appetite is picking up slowly but he still has diarrhoea. Samples have come back clear so it’s the effects of the chemo and antibiotics he has received. He is also doing extremely well taking his oral meds as this caused huge anxiety for Jack at the beginning because he felt so sick, but with anti-sickness on board and no more chemo he is managing them really well.

We now have to wait for Jack's neutrophil level to rise to at least 0.3 which may take some time and then once his blood counts have risen enough he will undergo a bone marrow aspirate to ascertain whether or not he is in remission. If he is in remission then we will go onto bone marrow transplant, which amazingly a year on from looking last time when there was no match available, there are now 2 possible donors. One is a 9/10 match who is in the UK as they are on the Anthony Nolan Trust and the other is the cord blood from a baby which is in the States. 

Thanks again to all those people who have been sending him and Joe cards and gifts.

Have a good Easter everyone - Jack met the Easter Bunny yesterday as he was visiting the Children's hospital!

Update 17th March 2008

Jack had his lines in last Friday together with an aspirate and a lumber puncture. The line was fine, but unfortunately his lumber puncture gave him a great deal of pain for a few days which made him feel very low. This was before we even got to the Chemo, which we were hoping he would go into feeling better this time around. He started Chemo on Sunday and he became very sick quickly. On the Monday night he developed a temperature which lasted for a few days. Tuesday night he had very bad diarrhoea all night and into Wednesday, so we were barrier and have not been able to leave the room.

Jack’s Doctor told us today that because Jack’s marrow is so flat, she does not want him to go home yet for fear of his health, so we are not sure when Jack will be coming home.

Update 9th March 2008

Jack had his line in on Friday and during the procedure a bone marrow aspirate was taken, a lumbar puncture to see if there was any leukaemia in his spinal fluid, and also some chemo was injected into his spinal fluid as a precaution. Jack was really worried about how sore he was going to feel with having his line in but it wasn't too bad when he woke up. The following day though he started complaining of back pain. We were due in to the hospital for a dose of GCSF which was to kick start his treatment today, so I rang the ward and we took him in earlier than planned. David, one of the Doctors, examined him and said that the lumbar puncture had probably irritated some of the tissue around his spine. He was given some pain relief and with rest it should hopefully ease within a few days. This unfortunately put Jack on a bit of a downer but once the pain relief kicked in he seemed a bit happier.

He had a good nights sleep and woke up pretty bright this morning, but as the morning progressed his back started hurting him again and he started feeling really sick, which must be down to the chemo he had received on Friday. Anyway, we needed to be on the ward by 11am so we set off with him feeling really sick and having had no pain relief, as he just couldn't face taking it. We were almost there when he threw up (thankfully due to experience we had some hospital sick bowls ready and waiting) but by the time we got to the ward he looked awful. We got him settled in his bed and he was given some anti sickness and pain relief through his line and was also put on fluids as he was obviously dehydrated. Then his first round of 5 days worth of chemo started at 1.30pm. 

By the time I left to come home this evening, he had devoured a burger and chips, had started reciting catchphrases from Little Britain and was showing my sister, Emily, his TecDeck skills (mini skateboards and ramps for those who are not in the know!) so thankfully he was feeling much better. He has another dose of chemo tonight which will take 4 hours to give and with this one he will need eye drops every 2 hours to stop his eyes drying up, thankfully they now have an eye ointment for overnight. Rob has to get him through taking his oral meds which are always a struggle, but we are trying to encourage him to take some in tablet form as some taste pretty disgusting.

Joe was going to come in this afternoon but has a really sore throat and the start of a cold so he went to a mates for the day playing computer games and learning to do back flips on the trampoline! I've dosed him up with calpol tonight and hopefully he will feel much better after a nights sleep. He has been coping really well with all of this, but when he first saw Jack with his lines back in he went up into his bedroom and had a good cry. It’s so tough as he knows that family life is going to be hard going for a long time again and he is at an age where you can't lie to him about what is happening to Jack, he knows the score. 

It would be really good for Jack to receive some cards. I know I asked this last time and we ended up with his room being covered, but it gives him (and me and Rob) a real boost and Jack then knows that people are thinking of him and wishing him to get better.

Update 5th March 2008

It was confirmed last week that Jack has relapsed. 

He had his planned bone marrow aspirate on 20th February and even though our consultant, Michelle, couldn't see anything through the microscope, the MRD (minimal residual disease) test they run at Southmead was showing 8% which at that percentage Michelle felt that she should have seen something. Rob, Joe and I were gutted but we decided not to say anything to Jack as we didn’t want to worry him until it was confirmed and it was extremely hard to keep things normal and that included letting Jack continue on at school. 

We then had to wait 6 days until the following Tuesday (26th February) when they did another bone marrow aspirate and Michelle rang me that evening to say that she could now see something through the microscope and that the MRD was now showing 20% disease which was quite an increase in 6 days.

As it was Jack's birthday yesterday, it was agreed that no treatment would commence until the end of this week, as it was very important to let Jack carry on with his birthday plans. 

Rob and I decided to tell him the day after it was confirmed as we felt that it was unfair to leave it until the day after his birthday to drop the bombshell. We knew that Jack would be upset but that also his excitement over his birthday would keep him going and for the past week we have done as much as we can to make Jack's birthday special. 

This afternoon we have to take him into hospital for an ultrasound on his neck as they need to decide which side to insert the line as both sides have been used and we need to make sure none of his veins have suffered through previous treatment.   

Tomorrow we then have to be in early for an echocardiogram on his heart, followed by a CT scan on his lungs and then up to oncology daybeds for various blood tests, as he may need a transfusion if his blood counts have dropped prior to surgery on Friday, when they will put in his line and also do another bone marrow aspirate to ascertain how much disease is there now. We will also be admitted to the ward on Friday and then 5 days of intensive chemotherapy will start on Saturday.

At the moment Jack is extremely well in himself and very much full of beans which makes this so difficult for us to deal with. He does have some bruising on his ear today which indicates that his platelet level (clotting agent of the blood) is dropping which is why he needs to have his blood counts done tomorrow. 

Going forward, the hope is that the course of chemo will decrease the level of disease and hopefully get Jack into remission. Then he will be undergoing another bone marrow transplant in the hope that this will cure him. They are currently searching for an unrelated donor on the bone marrow register, but as we found out a year ago, Joe and Jack have a unique cell in their make up which meant there was no available donor when he relapsed in 2006. So, if they are still unsuccessful, then it may be either me or Rob or an option to test close family, but this is something that we have yet to discuss with Michelle. We've only just got firm plans for Jack's first lot of chemo, as his leukaemia is very uncommon and Michelle has taken great care in deciding the right combination of chemo to use and dosage, as there is always the risk of making him too unwell for transplant, which was proven when he got the lung infection last time round.

I know that you will all be thinking of us. Life is a whirlwind at the moment.  

I’d like to just thank those of you who sent Jack birthday cards and gifts for his birthday. After hospital this afternoon we will be picking Joe up from his mates and heading to the Mall and to Pizza Hut (Jack's favourite place to eat at the mo!) Nothing like a bit of retail therapy to lift your spirits.

Update 9th January 2008

Jack has been extremely well. He had a couple of days over Christmas when he had a temperature, but he fought it off, which means his immune system must be back on track.

Christmas Day was great although very long as Jack was up at 4am, joined by Joseph at 5am and by 6am all the presents had been unwrapped and the boys were chasing each other around the house with Jack's new laser guns! We never went with the traditional Christmas dinner, instead we had a full English breakfast at about 11am, followed by a long walk with Ruby, our border terrier, then we had family round for a few drinks in the evening. 

On the Friday we went to Mevagissey in Cornwall to celebrate the New Year - the dog came as well. Mevagissey's tradition is for people to go out in fancy dress on New Years Eve so we all dressed up as pirates with Jack as our very own Captain Jack Sparrow! 

Can I please say a HUGE HUGE thank you to Joseph and Jack's Post Pal Elves for the lovely gifts they received! To Jack's Post Pal Reindeers - he was absolutely thrilled to actually receive a card from Rudolph. Thanks also to all those kind people who sent cards and best wishes. 

Next bone marrow test is due 20th February, so fingers crossed…

Happy New 2008 to you all!

Update 17th November 2007

We had a brilliant weekend at Center Parcs! The boys were absolutely 'swimmed out' by the Monday and we have found out Jack's bone marrow is clear.

Update 9th October 2007

Jack had his hickman line out last Friday which is such a huge step in the right direction. It’s just over a year ago now since we found out he had relapsed and during October/November last year I never dreamt I would be emailing with such good news as he was so, so poorly - he has certainly come on leaps and bounds since then. 

Can you please add this message on the post pals site as I would like to send out a HUGE, HUGE THANK YOU to Post Pals and all the kind people that sent Jack and Joseph cards and gifts during that very difficult time and also to those (especially Helen Brierley, Julie & Alan Barratt and Miss Murphy) who have continued sending them cards and gifts throughout this year. 

Update 5th October 2007

Jack is still in remission and is having his "wiggly" (Hickman line) out on Friday. He is really excited about this as it means more freedom for him and he can start to go swimming again, which he loves.

Update 7th September 2007

Jack had another bone marrow aspirate on Wednesday and the results are still good, he's still in remission which is brilliant. 

Joe and Jack have started back at school this week. Jack was very anxious about going back and also about having his aspirate as he hasn't had one for 8 weeks, so now that it’s the end of the week, he is feeling much happier and has really enjoyed his time at school this week. I really want to try and get Jack back to school as much as possible this year, so hopefully he will remain well and there won't be too many outbreaks of chicken pox, measles, etc. at school. Joe was obviously much more laid back about going back to school, just glad it’s the weekend - not enjoying the early mornings! 

Now that we know Jack is still in remission, we are waiting for a date when he can have his 'wigglies' (hickman line) out. This means that he can start swimming again and the first place he wants to go to is Centre Parcs, so we'll be looking at booking something up as soon as possible.

Update 14th August 2007

Apologies for the lack of updates lately, but all is still AOK in the household, although our computer has given up the ghost so we have to grab some time on Jack's when he allows us!

Rob has been on holiday for the past couple of weeks, right when the weather started to improve and now he is due to go back tomorrow its started raining again! For the first week we went to Devon and stayed at Beverley Park, a really good caravan park in Goodrington. My mum and Mike booked it for us and they also had a caravan next door with my sister, Faye, her husband Mark and my little nephew, Ashley. We had a really good week although we couldn't go swimming as Jack still has his 'wigglies' in and he has to be extremely careful in the sun so we never spent too much time on the beach. The week flew by and then on our way home we visited Jack's mate Henry who was admitted to the oncology ward last October with a Wilms tumour. Once Jack started to recover from his lung infection, he and Henry used to run riot on the ward; you'd never think anything was wrong with them!   

We spent most of Rob's second week at home, taking the dog out and catching up on some work in the garden. We also took the boys to Legoland one day and have been to Wookey Hole caves today (good place to visit when the weather is a bit dodgy!)

Before we went away I had to take Jack up to the hospital to their Thursday clinic for a check up and to meet with our consultant, Michelle. We had a really good meeting with her, there are no further treatment plans for Jack and in her words 'we're just going to sit tight' and keep a close eye on him, with weekly blood tests. At clinic, Michelle also asked for a special blood test to be done to check how much of Jack's blood is his or Joseph's. Reassuringly we found out that Jack still has 100% Joseph's blood which is fantastic as this means his bone marrow is effectively Joseph's as well. The next bone marrow test will be on 5th September which is the day after Jack starts back to school and then if that test is still clear Michelle wants his lines ('wigglies') taken out as they've been in for a year now and are always an infection risk. It will mean that Jack will have to have needles again for tests which he will not like but hopefully the tests will become less frequent. He'll also have another CT scan to check the conditions of his lungs. 

I actually had to learn how to draw up saline and hepsal into syringes and flush Jack's lines and change the bungs on the end a few weeks back, so that I could do them whilst we were away on holiday as they need to be done every week to reduce the risk of infection. I did feel nervous as you need to be really careful to keep everything sterile. I was a lot slower than the CLIC nurses but felt quite pleased with myself once I had done it.

I can't believe it’s a year ago tomorrow since Jack was first admitted onto the orthopaedic ward with a problem with his knee! What a rollercoaster we've been on since then.

Update 19th July 2007

Jack was discharged from hospital yesterday, temperature has stopped and he is absolutely fine in himself. Not sure what the cause was, but he has got over it and is still in remission which is the main thing. His neutrophils are still below 1 which means he won't be able to go to school until they come back up, so he may not see his end of year. We also need to avoid busy places or anyone with any infection.

Jack hasn't had much sleep over the past week, so he had a really good lie in this morning and is having a 'pyjama' day, playing games with Joe, chilling out and watching DVDs. 

The CLIC nurse will be round in the week to check his blood levels and we will be sent an appointment to see our consultant at her Thursday clinic to discuss when the next bone marrow aspirate will be and probably CT scan for his lung.

Phew, what a week!

Update 12th July 2007

Good news regarding bone marrow - tests show still clear of disease which is fantastic. I can't put down in words the week Rob and I have had, we are so relieved.

Still not sure what has caused the temperature but that has settled over last 24 hours and the CRP level in his blood has gone down today which means the antibiotics are working and the infection is hopefully going. Jack's neutrophils have dropped again today though so we've managed to get home for a few hours, but back in hospital overnight so that Jack can continue on the IV antibiotics.

Update 12th July 2007

Took Jack to A&E on Sunday night as he developed a temperature, tests taken have shown infection and he has no obvious symptoms like a sore throat or cough, in fact he is extremely well in himself and fed up of being in hospital now. On Sunday his blood counts were OK but doctors still decided to admit him as they are taking no chances with Jack. Since then he has been on IV antibiotics, unfortunately his blood counts are not going the way we would like and are dropping and his CRP (level of infection) is rising so another antibiotic was added yesterday. I asked for his bone marrow aspirate to be brought forward as it was due next week so they fitted him in yesterday and we will get the results today – feeling extremely anxious but by the end of today at least we’ll know whether or not we are dealing with another relapse. 

Please keep everything crossed for us today.

Update 8th June 2007

We had a long day at the hospital on Wednesday when we went in for Jack's bone marrow aspirate, but it was worth it as the results show that he is still in remission, which is fantastic. His neutrophil level has been low for the last couple of weeks so he had some GCSF to give them a boost. His neutrophils could be dropping due to Septrin which is a medicine he has to take on weekends only. More blood was taken on Wednesday to run a special test; this will tell us whether or not he can stop the Septrin. We are also waiting for another CT scan appointment to check the condition of his lungs.

Jack went back to school on Monday but I had a call yesterday whilst I was doing the shopping at Asda to say he was complaining of a chest pain - I instantly thought it was to do with his previous lung infection, but when I got to school he said it was in the middle of his chest. I brought him home and it got better throughout the day so he has gone to school again today. There is also someone off with chicken pox but she is a couple of years above Jack and over the other side of the school so, after checking on Wednesday with the Drs, it’s OK for him to go. We are waiting for the results of another test they did on Wednesday which will show if Jack actually has any antibodies against the Chicken Pox virus so then at least we'll know how much he is actually at risk from the virus - wish they would have done it earlier! 

We haven't really been up to much since our visit to the Household Cavalry. Rob and his brother have been working on our loft to make it into a bedroom for Joseph. This then means Jack can move out of the 'box' room into Joseph's room giving him more space to accommodate all his toys! It’s also made us have a really good sort out of our loft as it was just a dumping ground and becoming a bit of a mess. We have had to live in a bit of a muddle for the past week or so but it’s going to be worth it giving the boys a bit more of their own space. I was really concerned about the dust that comes with any kind of building work as it really wouldn't be good news for Jack following his lung infection, but I was assured it would be OK.

It’s Joseph's 12th birthday today. I don't know who was the most excited last night - Jack or Joseph. He's having 3 of his old school mates over for a sleepover so they are going to have to crash in the living room as his room isn't ready. We've already got the futon in there due to the loft being done so I'm sure they will be fine - not sure why it’s called a sleepover though as they never sleep! They'll be having a barbeque for supper and I was instructed to buy bacon and chocolate croissants for breakfast. 

Ruby (the dog) is now allowed out and we've taken her on many walks in the past week or so. We took her for a nice long walk on Sunday across Ashton Court and she was worn out when we got home. She is still on a long lead as we haven't had the guts to let her off yet as she gets too distracted by other dogs and I'm not sure if she'll come back. We started dog training lessons with her on Tuesday which was just chaos with so many puppies in one place. The boys really enjoyed it though and Jack was very impressed to find that there was a 6 month old Great Dane there called Eddie, for obvious reasons he wasn't allowed to join in with the puppy play session as I think he would have trod on a few spaniels.

Still not got to see the Pirates of the Caribbean film yet which Jack is itching to go and see but we’re hoping we can fit it in around work on the loft some time this weekend. 

Not sure when Jack's next aspirate will be as Michelle mentioned spreading them out a little bit more but we will let you all know in due course.

Update 13th May 2007

Jack had another bone marrow aspirate on Wednesday and we found out yesterday that it is still clear of any leukaemia. This means he has now been in remission for 6 months which is absolutely brilliant!

Thank you to those kind people who are following Jack's story though the Postpals website and for the cards and gifts, as he looks forward to getting them when we visit the hospital and as soon as we get to daybeds he asks the ward clerk if there is any post or parcels for him. Also thank you for the gift I received, Jack was well put out that a parcel had been delivered to the hospital for me rather than him, I had quite a laugh about it with the nurses - his face was a picture! 

Update 29th April 2007

Jack's CT scan showed no improvement on his lungs since the last one so we are continuing with the oral medicine and they want to rescan again in a few months time. It may be that he is left with scar tissue but our consultant wants to be sure there is no fungal infection left. Bone marrow aspirate is due on 9th May, so everyone keep your fingers crossed please.
 
Oh and we have got a new puppy called Heidi!

Update 12th April 2007

Well those 3 weeks have gone pretty quick – Jack had his bone marrow aspirate done on Tuesday morning and after an anxious couple of days wait we found out this afternoon that it still looks clear of disease. Michelle, our consultant, was unable to tell herself as the sample they took on Tuesday wasn’t very good so she had to wait for the results from the lab where they obviously carry out much more intricate tests and they confirmed that the MRD test (minimal residual disease) was still negative which is brilliant. Michelle’s unsure as to whether it’s what Joseph donated just before Christmas working at keeping the disease at bay, as there is no outward evidence like Graft Versus Host Disease, or it could still be the chemo Jack had as it was so intensive. Whatever it is, I just hope he keeps on proving us all wrong as he has certainly beaten the odds to be where he is today and to be so well.

I took Jack for another CT scan on his lungs today as well so we’ve had a fairly busy week - we’ll get the results when we’re next in hospital which is next Monday. I had to take him to the BRI for his scan and he was the only child waiting today so when the radiographer came out and said “well you’re obviously Jack Banks” he said “yep” and got off his chair. I started to collect up our stuff and he just carried on walking and said “I’m going in on my own mum” and off he went and I just sat back down, redundant! He certainly made all the other people laugh and I just said “he’s pretty used to it and will probably tell them what to do!” He often says to me when we’re on our way to the hospital “if we can’t find anywhere to park today then just drop me off at the door and I’ll meet you on daybeds” – obviously I don’t, but I bet if I did he would find his way up to the ward!

We had a good Easter weekend, took the boys to the fair at Bath Park on Good Friday and then spent Saturday and Sunday at our friends in Portishead. Rob even managed to get a game of golf in on Sunday morning.

Update 11th March 2007

Good news again about Jack's bone marrow aspirate taken last Wednesday; it’s still looking clear of disease.

Sorry for the delay in letting you all know but we never found until late Thursday afternoon and then on Thursday night Jack started to get a temperature, so I rang the ward and we took him into A&E where they did the usual taking of bloods from his lines to check for a line infection and started him on antibiotics. We were admitted onto the medical ward at about midnight as there were no beds available on oncology. The following morning they took a sample from the back of his nose as he has had a bit of a cold about him for a couple of weeks and the tests they ran showed that he had developed the flu so he was put onto another oral medicine. His temperature was still up on Friday and they continued with the antibiotics as the results for a possible line infection would take 48 hours. On saturday he was much better in himself, his temperature was a bit more stable and he was eating and drinking. Today he was pretty much back to his normal self, just a bit of a cough and blowing his nose a lot. No temperatures since last night and no sign of a line infection so they discharged him and he is now at home chilling out and playing on his Xbox.   

We’re back in on Tuesday for a check up. We have to go to the clinical investigation unit as he is not allowed on daybeds until they are sure he no longer has the flu. They will have to take another sample from the back of his nose which isn't a very pleasant procedure. We're able to give him calpol at home if he does get a temperature and provided he doesn't get any worse he can stay at home.

His birthday went really well last weekend, he had (a very much deserved) brilliant time at his party and got loads of pressies! Everyone who came to the party who hadn't seen Jack for some time couldn't believe how well he looked especially now that his hair has grown back - I'll have to take him to the barbers soon! 

We're hoping that Jack is going to be well enough for a trip to London next weekend which we've been offered via CLICSargent by the Joshua Foundation. They organise a trip every year for kids with cancer and 10 families go, 2 from each oncology centre in the UK that they deal with. Fingers crossed we'll be able to make it.

Update 28th February 2007

Jack was due his bone marrow aspirate today but he wasn't booked in the diary on daybeds so it’s been put back until next Wednesday. 

This is a bit of a blessing in disguise as it means that we can look forward to his birthday which is on Sunday without worrying about any results this week. He is getting so excited, we're having a party for him and he has lots of friends coming which, to him, means more presents!   

Hospital visits are about twice a week, with an extra visit on the weeks that his bone marrow aspirate takes place. He has remained well, has a lingering cold but that’s the norm for kids at this time of year and also, his neutrophils are being kept above 1 which means he is able to fight it better.

His last CT scan showed some slight improvement to his lungs but its not fully recovered, one of our Drs said that it can take ages for the lung to fully recover and that Jack needs to continue with the oral antifungal medicine and he will have another scan in about 6/7 weeks. They are being very cautious with going forward with any further treatment as they don't want to aggravate what is still on his lungs causing things to flare up again. I just keep on thanking our lucky stars that he is still in remission and able to lead as normal a life as he possibly can. 

He went to school today, reluctantly, as he hasn't been for a couple of weeks, but once he got there he had a really good day. 

I'd just like to send a huge thank you to those people who have been following Jack's story on the post pals website and have already been sending him birthday cards and gifts in the post. He was thrilled when he received a couple of packages at the hospital yesterday, its just lovely to see his face light up when he gets something through the post. Also big thanks for the cards that Joseph has received as well – it’s heart-warming to know that people we've never met are also thinking about our boys.

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