Thursday 30th December
Apologies for the delayed update.
In the end we had to stay for a week in Lapland Central Hospital. Jesson had a pin in his tibia and his leg was in traction for three days, at this point the docs were happy that the bone was straight enough to put on a cast. Jesson has another general anaesthetic to have the procedure, and he was gone for a couple of hours, this was agony.
The language barrier was especially difficult with Jesson's existing medical history, it was so difficult, trying to explain about low platelets, not to use certain drugs, else they will drop lower. His platelets had really taken a dive due to the injury. The Doctors had ordered a bag of platelets from Helsinki, at this point I was trying to say he also has a really bad reaction to platelets, and has to have a lot of medicine before platelets transfusion, nobody seemed to understand, also the peanuts allergy.... etc it was a nightmare.
By this time I'm on my own, Ashleigh had gone home with Kesia, so none one to talk to, no books no TV, it was not good.
We managed to get home a week after the accident, we flew in an air ambulance, the aircraft only held Jesson and 3 passengers, so this was another experience, all these things I never thought would happen to me in my life, it is amazing! Why have I been given this journey??
Jesson's cast is from his ankle all the way up his leg and all around his waist and back, at the beginning it was so uncomfortable, and the pain from the break was horrible, but as time has gone on he is really trying move around, he is crawling on one leg, and using a skate board to pull himself along!
We have had a great Christmas, and Jesson and Kesia have really enjoyed themselves, we have seen lots of friends and family, it has been great.
Santa was good to the children, they have been so happy playing with all their new presents.
WISHING EVERYONE A HAPPY NEW YEAR
WITH GOOD HEALTH & HAPPINESS
Sunday 12th December
Nightmare in Lapland!!!!!!!
We are in an Hospital in Finland, Jesson has a really bad break on his femur. His has had an operation to straighten the leg, he has weights to stretch and straighten the leg.
I am now asking questions like why, and feelings of anger and fear for Jesson.
He may have to go back for surgery to have some metal plate to straighten the leg, he can not sit up at all, and may not for a long while. He is on a lot a pain meds and is comfortable now.
This was done in a restaurant floor he slipped over.
We are the only people in the children's hospital, and they are looking after us well, but the language is very difficult!
I am not sure when he will be well enough to fly, they will have to organise a special flight as he can not sit up and weights have to stay in position.
I will update as soon as I know more.
Bye for now.
if anyone would like to contact me click on the link to Contact Us and leave a message.
Wednesday 8th December
This is a very brief update to let everyone know, we are heading off to Manchester Thursday in preparation to fly to Lapland, which is in Finland. We plan to go on a Husky Dog trail, and visit a Reindeer farm, on to a ceremony at the Arctic circle, followed by a visit see Santa Claus.
A MASSIVE thank you to Cricketer's Pub. They raised all of the money to make this trip possible.
Also thank you to our special friends that organised this, and have given non-stop support throughout.
We are home on Monday evening, we will post photos as soon as possible!
Wednesday 24th November
We have been very touched by the Lord and Lady Mayoress decision to asked Jesson and Kesia to switch on the Christmas lights. The empathy and genuineness shown to us by the Lord and Lady Mayoress will stay with us for a very long time. As a family of a child with a serious illness, we have had some very scary moments over the last year, we have also had some magical moments. Seeing Jesson and Kesia switching on the lights will definitely go in the box marked magical moments. Pictures here
We finally have Jesson urine results back, normal thank goodness.
I will list them for the other NB parents, as these are an important marker that can show any change as far as Neuroblastoma
Jesson is still unwell at the moment, he appears to have some kind of virus or infection, sore throat, sore ears, coughing, he keeps having high temperatures and sleeping in the daytime, which is very unlike Jesson even on treatment Jesson never slept in the day. I feel concerned how he is at the moment, so I guess when he wakes it will be another trip to the hospital.
Friday 19th November
I have been a little slack on the update, I guess that is good as we haven't had much to report.
Jesson has just spiked a temperature of 38.5, because he no longer has a Hickman line there is no urgency to rush to the hospital, we have to monitor him tonight and see how he is in the morning, but today he has been a little off, saying his legs were achy and tired, and he has a cough and runny nose.
We hope he makes a speedy recovery as he has a big job to do on Sunday,...... get ready for it, The Lord Mayor and Lady Mayoress have chosen Jesson to switch on the Christmas lights in Leicester, we are really honoured and happy that Jesson has been chosen for this job. Today we were met by the Mayor and Lady Mayoress, for a guided tour of the town hall.
Jesson went up in a mini crane with a platform to the top of the Town Hall pretending to put in the last bulb. The local paper were there taking photographs in preparation for Sunday. Jesson was his usual self running around shouting greeting the Lord Mayor with a big hug!
Jesson also had a huge plaster on his forehead! the photos will be great! I told him to take it off, but anyone who knows JJ he had made his mind up it was staying. After the photos and outdoor excitement we were invited to have tea with the Lady Mayoress, it was good to be able to sit and chat, Jesson and Kesia still raced around, and were both laying on a chaise lounge, I tried to apologise for there loud excited behaviour, but they were only having fun! nobody was really bothered.
On Sunday we will arrive around 3.45pm, in preparation for 4pm when The Lady Mayoress, Jesson, and Kesia will press the button, If you can make give him a big cheer!!!!!! I am really excited, I will have my box of tissues. Afterwards we are invited with other guests to have tea in the Town Hall.
I would like to say a huge THANKS to all involved in the fund raiser at the Cricketers Grace Road. Pics here
This will enable us to take Jesson to Lapland for 3 days we can not wait!
I will update on Lapland and fundraising soon.
Saturday 30th October
We are back, it has gone far too quickly. We have some fantastic memories, and over 400 photographs, for obvious reasons we will only be able to show a few!
Where do I start, we have crammed so much into two weeks and anyone who has visited Florida and even tried to see all of the Theme parks, know that it is an impossibility.
We managed to visit, The Magic Kingdom, Animal Kingdom, Epcot, Seaworld,Planet Hollywood, Busch Gardens, Universal Studios and Island of Adventures. We also went to Clearwater for a day and stayed over night, unfortunately the Hotel room was very small, unlike the previous accommodation at Bahama Bay in Orlando, which was huge! After a discussion we decided to go back to Bahama Bay and finish our holiday in a really great condominium, we had everything we needed in there. Jesson loved the fact that every room had a large TV that played Cartoon Network, as many people know he is as avid fan of this channel.
The Weather was fantastic 85 everyday, a little cloud or should I say enough to cool you down every so often! Unlike this wintry blustery weather we have been greeted with here.
While we were on holiday Jesson was taking his Accutane, and it played havoc with his skin causing rashes and soreness, at a guess the sun made it worse, and the sand made it very uncomfortable, so we went mainly to the swimming pool. To my total amazement Jesson can swim, under the water only! But he can swim, I can't tell you how this makes me feel, I will try, proud, amazed and a very emotional moving feeling. Jesson only had his Hickman line out 3 days before the flight, so prior to this, his bath water was only a couple of inches deep, washing his face was a nightmare, so to be jumping in a swimming pool and swimming under water is incredible.
As many of you may already know we did end up Orlando hospital, 50 mins before take off Jesson was feeling hungry, so grabbing every moment to feed him we got the nearest available snack, with in minutes Jesson's face had swollen, he was complaining of chest pain, a tight throat, his breathing was becoming difficult, so with out delay we called 911, and the Fire Crew arrived, we were rushed into ER, and remained there until late that evening when Jesson was getting fed up of sitting still, he made a good recovery and he knows that peanuts are off of the menu! Well until we have his allergy tests to confirm what caused this severe reaction. Peanuts are the most likely reason for this event but we will have to wait for a series of test to confirm what the actual cause was. Not only do we have to cut out food containing peanuts, even if it has been down the same assembly line, it could contaminate the food, and cause a very serious reaction.
We are now trying to get back to our, "odd kind of normal", out and about, clinic visits, blood tests in preparation for round 3 of Accutane/ Retonic Acid. This is due to start on Wednesday. We hope the side affects are not increasingly worse as it is horribly drying to Jesson's skin and causes itching drying and soreness. At this time we have to remind ourselves it is an essential part of Jesson's treatment.
I will also add some photos from a fancy dress party we went to. We would like to thank the Hunt family for a great afternoon.
We would like to thank everyone that made Florida possible.
All the Pictures here!
Wednesday 6th October.
Well it's the eve of our son's 5th Birthday, last year this time last year there was something so apparently wrong with Jesson, and no answers to why Jesson was in so much pain. Here we are a year on and he is doing really well and looking absolutely great. We are grateful for every minute we get with him, every smile every giggle every scream!!!
This brings me to Sunday, Jesson had his Birthday Party we had about 150 guests, a disco, a magician, a balloon modeller, and a face painter. And not forgetting the Lord Mayor of Leicester!! It was a wonderful party, aimed at friends, family and our supportive group over the last year. This week has been like a tornado, flashing before my very eyes.
Today we managed to get Jesson's Hickman line taken out, we have our boy's body back, no more wigglie purse around his neck. Having the Hickman line increased the chance of life threatening infections; Jesson can do more normal activities, like having a hot bubble baths, swim, and splash in water. Today after the operation Jesson said, "who ever has clamp and mushroom, I just hope they will look after them well", these were the names he gave his wigglies, I thought this was very sweet, but I never want to see another Hickman line ever again, not in my Babies body.
Well Saturday is the big day, Florida here we come! get the ear defenders ready, it looks like the platelets are going in the right direction we have 84!!!!!! We are being taken to the airport in a stretched Limo; this should make the journey go quickly.
I have a Thank you list this week so here we go,
Thanks to Tom at Brucciani's for the cake,
Smudgie The Balloon Lady.
Fiona the face painter.
JJ Max The Magician.
June at Turner's for the goody bags.
Marilyn at the Cricketer's for the loan of the decorations and Jesson's present.
Jackie and Neil at Buffet to Banquets for the great food.
Shaun Knapp for making Jesson's birthday special.
David Chesters for getting everyone involved.
Everyone’s endless support.
All the pressies, Jesson was very excited, and doesn't want to leave the house as he wants to play with them all.
Love to you all, bye see you in two weeks. xxxx
Pictures from Jessons Birthday party here.
Friday 1st October
We have finally had news on the Bone Trephine test, it was done over two weeks ago. As many of you may remember the last time Jesson had this test, we were very confused, it was done about three months ago. We had conflicting reports, we were told it was positive for Neuroblastoma, and then inconclusive! We were left in such a position that we felt we needed to know what was really going on. We managed to get the Docs to agree that we did need to know, as then we could make an informed decision on further treatment.
We found out today it was negative for Neuroblastoma, we were thrilled as we have had a lot of little issues with leg pain, arm pain, restless nights, which were all the symptoms this time last year. Obviously not just these kinds of symptoms alone, but lots and lots of pain and unable to eventually walk.
Many people ask, "what does this test tell you?" well, it is very difficult as we are learning everyday about the disease, in a nutshell his bone marrow is clear, the trephine as I understand it is the core of the bone, this test indicates that the core is clear of disease. It is very important for this to be clear.
As we all know this certainly does not mean that we are out of the woods yet, as the relapse rate for this disease is very high. Also a lot of people have also said, "You’ve got to stay positive" we certainly do but every flinch from Jesson is another worry,
But these results indicate Jesson is doing very well, he is happy, and enjoying life to the MAX.
It is a year since diagnosis on the 16th October, this year has gone so quickly, and it has been an extremely tough one, we have cried a lot and laughed a lot. But we are all here to tell the story!
On the platelets front, it is looking likely that we will make it to Florida on Saturday 9th October. His platelet count is 66, and hopefully this week he should get more!
So to conclude, we have had the results we were after, we are now pushing to get JJ's Hickman line out before we go on holiday it would be wonderful for him to swim, and splash in water, an not to have Mummy and Daddy in the background saying " don't get your wigglies wet, you will end up poorly!"
Not forgetting to mention Sunday 3rd is JJ's Birthday party, he is very excited I will update to let you know how it goes!!!!
If there is anyone interested there is a little Ozi girl called Kaitlyn, whose journey we have followed very closely if you scroll down there is and endless list of NB kids, Jesson's name is there amongst many. www.caringbridge.org/ne/kaitlyn
Friday 17th September
We have had another busy week, Jesson has been to school for two days this week. He has really enjoyed it! He has been reading and writing, and showing great enthusiasm to participate within with the group. Jesson has stayed until 1.15pm this has enabled him to have lunch and play in the playground for an hour.
Jesson's platelets are still dropping due to the radiotherapy, this is quite an issue as we have booked to go to Florida on the 9th October, the platelets will need to be at least 60-70, and at the moment they are 32. So I will update on platelets as we are desperate to go away for a holiday.
Jesson went into LRI on Thursday for the bone Marrow and Trephine aspiration; he was in quite a lot of discomfort when he woke up after the anaesthetic. He has settled this morning and waiting to go off to school, I can still see he is sore! We should get the primary results in about 10 days. We are praying for clear test results, if this was to happen then his Hickman line would be taken out, if not it will stay in as he would probably get more chemo.
Saturday Jesson is a mascot for Leicester City, anyone watching the match look out, and give him a big cheer!!!
Mascot For Leicester City Football Club.
I have posted some photos of our outing today at LCFC, Jesson and Romany had a wonderful time as mascot, they were both given a football kits and were allowed behind the scenes at the club.
We were allowed a box to watch the match, Kesia fell asleep on the floor, while all the children were playing!
I have also posted a photo of Jesson's first day back at school, he looks so cute!
Click here for the pictures.
Thursday 9th September
We have had a steady few days. Jesson has finished his Radiotherapy last Friday. I did ask when the tiredness would kick in!!! considering Radiotherapy knocks the adults around he has not complained at all, he hasn't been as lively but that could be due to being cooped up in the car for most of the day, or having antibiotics, towards the end of this treatment we were really beginning to feel for him, as it was such a bind travelling everyday to Nottingham,
Jesson has also finished with his antibiotics; it seems to have cleared the line infection.
At the weekend we didn't waste any time we went off to Legoland over night, it was superb for Jesson and Kesia's age group, JJ thinks he has passed his driving test, and he managed to go on almost every ride that was suitable for his age, they were both so excited and full of it, we stayed in Legoland until 8pm, bought loads of Lego went back to the hotel. At 10pm Kesia crashed and was followed by Jesson at 10.30, we were shattered too.
The following day we did a quick tour of Windsor and Eton just to see the sights, we were home mid afternoon.
We had a clinic visit, Jesson will have a Bone Marrow and Trephine test done under general anaesthetic on Tuesday, we are praying for clear results.
Jesson has started on his Retinoic Acid, Jesson has to swallow 6 capsules a day, and they are quite large. Trials have proven that this improves long term survival by 10%, this is also a very important part of the treatment.
Since Monday we have been a little quieter, but we are helping to move Mum and Dad from there house to a bungalow this weekend, so I guess it will be very busy.
I will keep everyone informed of the following week ahead.
Tuesday 31st August
I have just stepped in; we have just arrived home after our appointment at Great Ormond Street Children's Hospital London. We have had a meeting with a leading Consultant, who is heading the Anti GD2 trial that is to begin in the UK early 2005. Unfortunately we learnt that Jesson would not be eligible for this trial, as the trial rules are very strict. We kind of knew this, and this is why previously we decided that we would go to America for the treatment.
Dr Brock spent a long time with us discussing the treatment. We learnt that the Anti GD2 was not the real answer for Jesson at this moment in time, as this drug isn't designed to clear the trephine.
We have decided a more conventional route, like more chemo, if needed. We think this would be a better option. This would depend on more tests and results. Appose to a trial drug that hasn't any statistics. I do not like the thought of more chemo, but we know it works, as long as the disease still responds. Unlike the Anti GD2, which has no definite information to say does works.
So the game plan is, wait for Jesson's Radiotherapy to finish, which is Friday, and then we will hopefully get some more tests and see what the next step is. At least in this situation we get to stay here in the UK, and also we feel things aren't being left there are still options, and things will be done.
Thank goodness we do not have to think about the huge amount of money we were franticly trying to raise, this will give us a chance to relax and enjoy our very special time as a family.
Any money that has been previously donated, we will we will keep in Jesson's Fund for the future, as we never know there may come a time when there are no more options here. And obviously Jesson will have other needs for the future, tuition, physical needs due the leg that has been radiated, hearing loss that Jesson has suffered, and numerous other problems that has been brought on by the aggressive treatment he has had.
We would also like to give some of it to our dear friends Paul and Jayne, who very sadly lost their beautiful Amber only last week. This money is going towards a Halloween Party for all the children and their siblings on ward 27.
This leaves us with a dilemma, if there is anybody out there that donated to Jesson's fund specifically, to enable us to take him to America please feel free to ask us to return it.
It is hard to find words to thank people for there ongoing support towards Jesson. From very the bottom of our hearts we would like to thank you all.
Friday 27th August
Apologies for the slow update, we have had an incredibly busy fortnight.
We are still slogging away with the FUNDRAISING, things are happening, but just not as quickly as we could have wished. Thanks to everyone involved. Thank you to my very special friends that have helped, and made this whole journey more bearable.
There are a lot of ideas in the pipeline, just waiting to happen. So we have to be patient and carry on with the hard work.
Any one willing to participate in FUNDRAISING please click on the contact us.
We have been to Nottingham everyday for Radiotherapy; it has been a real trek back and forth. We have another four days next week. Generally Jesson has been relatively well, until last Wednesday when he lost his sparkle; he was complaining of tummy ache and feeling unwell. Thursday Jesson was not himself at all. I was becoming more concerned as the day went on.
By night time we were all packed and ready to go off to Centre Parcs the following day, Jesson was crying with head pain and feeling really unwell, he was acting very peculiar, when I put him into bed he collapsed and feel fast asleep. I left him a few minutes and thought about the situation, I took his temperature and it was 39.4 he was burning hot. We rang the hospital and he was admitted immediately, he was really sick in the car on the way into hospital, and he was shaking. He was given paracetamol, after an hour or so his temperature came down a little. Jesson had bloods taken to see what was going on.
At about 1.30am the doctors informed us that they didn't think there was any major infection, and after begging they let us go home.
We set off to Centre Parcs after talking to Jesson's consultant, we were asked to ring everyday and check what was happening with the blood cultures that were taken. We had a fantastic time. Jesson was tired and pale but tried to carry on having a good time. We really enjoyed our time with our friends, and the nine children. We swam, cycled, and enjoyed the good company.
On our return we went into clinic for Jesson's check up, unfortunately he had grew a bug in his line, so not only have we been to Nottingham everyday we have also been an in patient at Leicester, so you can imagine it has been hectic.
Last night Jesson seemed to be returning back to his normal happy self, running around the hospital causing mayhem, and playing ghosts and monsters in the nurses office, I'm not sure who enjoyed it more JJ or Lizzie the nurse!!! They were having a great time.
We have been home today, and we will have community nurses out to administer the drugs, so we hope that the bug clears up and we can salvage the Hickman line. It is so much better as Jesson still has a lot of blood work done, and we do not want to put him through any more than we have to.
I will update sooner this time.
Once again thank you for all your great support.
On a very sad note, all our love to Paul Jane and family, on the sad loss of their beautiful daughter Amber, I gave her a kiss goodbye last Monday.
It will be a kiss remembered forever........
Sunday 8th August
This week has been difficult.
Since the test results showing Jesson still has cancer in his bone marrow, and leg, we have been trying to decide what is next. I have been doing lots of research on 3F8 Monoclonal Antibody, this drug is used for Neuroblastoma; it is only used at Sloan-Kettering New York. If this is the route, it will cost £160,000 this payment would be needed before the treatment started.
If we do not do any more treatment, we know that Jesson will not survive.
After all of the research I have carried out, this is the only treatment that could give us some hope.
It has been used for quite few years at Sloan-Kettering showing promising results, Some children respond very well, others not. I am in contact with several parents of children undergoing this treatment, I am aware of what is involved.
If we decide that this treatment is for Jesson we need everyone’s help.
If you have previously thought about raising money for Jesson, this is the time.
If a 160 people could raise £1,000 that would be it, sounds all so simple!!!
Any Ideas click on the contact us.
We start Radiotherapy tomorrow every day for three weeks; this is at Nottingham City Hospital. Back to sickness, tiredness, and poorly tummy.
Thoughts for Jesson, this week and pray we make all the right decision's for our special little boy.
Sunday 1st August
Well what a fab week, it has been non stop. Jesson has had bounding energy which is wonderful and I feel exhausted.
The week kicked off to a steady start, Wednesday we decided to go to Knighton Park with Jesson and his best friend Mia and Kate, it was wonderful, JJ Mia and Kesia played in the sand for a good hour, followed by the little park, with slides swings and a little train, for another hour. The children played really well and had a fab day.
Thursday at the last moment we decided to take a trip to London, we went with Mary around the bend, Mum, Kesia. We went on the train, we walked around Regents Park, I was so impressed, it was so beautiful it was so well kept, lovely flowers, and water falls, which certainly captivated the children.
After this we walked to London Zoo, now get this, we saw 4 yes 4 animals all day!!!!! A hog, parrot, and a monkey, and one other that I forget what it was. JJ wasn't very interested in the wild life. There was a huge Nintendo exhibition, now this was impressive!!!! He would have stood there all day playing on the games, oh, and not forgetting he played on the adventure area for a good hour, running around and shouting. And then the bouncy castle, (anyone on ward 27 close eyes) he is full of bruises, mmm I wonder why???? London was a success, very tiring, we arrived home 8.30 in the evening, and he was still running around a 10pm.
Friday was a chill out day we relaxed all of the day, we managed to get dressed at about 3.30pm it was lovely nothing to rush around for. Jesson thought is was good lying around not having to rush.
On Saturday there was a huge charity event for Jesson. Two pubs in Rearsby, The Horse and Groom and The Wheel, organised a fun day. It was mainly set up by Ruth and Jo, two good friends of Ashleigh .Ruth involved her Dad by getting him to shave his beard that he has had for 25 years, and Earl, Ruth's brother had all of his hair shaved off. The Leicester Mercury was there to take lots of photographs.
I would also like to say a massive thanks to whoever donated the Mercedes car for a raffle prize, there is a photo of Jesson proudly sat on the bonnet. It was fabulous to see such over whelming support within a small community. It was great to see faces that we haven't seen in a while. Also our family showing their usual never ending support.
A MASSIVE THANKS to Ruth and Jo, xxx
PS here are some pics from last week.
Sunday 25th July
This week has been very special, one of Jesson's wishes has been granted.
We went to JCB with Russell from Wishes 4 Kids. Jesson really loves diggers, so this was a real treat for him. We were picked up early Tuesday morning, we expected to go in Russell's car, Jesson was very excited, as we were waiting to go a limousine pulled out side our house, Jesson's face was a picture, we stepped into another world sweets, fizzy pop, and Babe 2 all in the back of the Limo, and a trip to McDonald's!!!
We arrived at JCB to be met by our tour guide Ivan and Jane, we were told that we would have a short film as an introduction to JCB, I expected a video on the TV, we were whisked away to a full size cinema, with Welcome To Jesson Wragg, on the screen. Jesson gave us a full running commentary of the film, surprise surprise Jesson was easily heard by all of us!
After this short film we had a tour of the factory where we could see JCB's being made, we travelled in a buggy, all of us were given protective glasses and earpieces to enable us all to hear Ivan, who gave us an interesting tour, bearing in mind it was on a four year olds level it was a real giggle, Jesson was so interested and ask constant questions. After the tour we had a lovely meal, I was very impressed with the food, Jesson loved the bread the meal was untouched, not surprisingly! As he will only eat meat and veg, I shouldn't moan!
The best part for Jesson was the afternoon, he managed to have a couple of hours playing around and driving with Ben in every digger in the yard, once again his personality was as huge as ever, the digger was about 200 yards away and we could still hear him above the noise of the JCB, Ivan promptly commented how quiet the machinery was, as you could still hear a child above the sound of the engine ( but we are talking about foghorn Wragg here) After Jesson trying every button and manoeuvre he decided that it was time to go back to the Limo. Russell was convinced he would be asleep shortly after the journey began, obviously he needs to get to know Jesson a little better, as we arrived home he was laying on the floor of the Limo singing Jingle Bells at the top of his voice.
At 8.30 that evening he was still dancing impersonating the dancing diggers. Since Tuesday Jesson's never ending energy has kept us all on our toes.
We have been out and about most days, Gorse Hill farm, Abbey Park, and we have just arrived home from a friend’s BBQ, all in all it has been a fab week.
MEGA thanks to Russell, Jesson really had a superb time.
Monday 19th July
Sorry for the delay in the update, I guess there are lots of people out there wanting to know was is going on.
After the meeting on Thursday with Jesson's consultant, we were told that there was a probability that there is something in the Trephine, this was better than the off set as they said it was positive. Because there is so many immature cells growing after transplant it is very difficult to see what is going on. We are carrying on with the Radiotherapy, this will not clear the trephine but only halt the spread from the leg tumour, but as far as the trephine there is nothing more to be done apart from hoping that the growth is slow.
Because the situation has changed, we are now taking a slightly different approach, we are looking at a more homoeopathic route for Jesson's treatment. I have been trawling the Internet for weeks to gain this information. There have been lots of studies with food, as we are looking at Jesson's diet.
We have discovered that there a few foods that can slow down tumour growth, we are trying as many of these ideas as we can. Or let me just rephrase that, as many as we think possible to get into Jesson!!!!!
We are giving Jesson Turmeric, not just any turmeric, this is a very pure kind from India. This is proven to have many beneficial properties it can be used for infections, cuts, grazes, seizures, and cancer tests that have been done on mice have shown a slower growth of tumours.
All of the vegetables we give to Jesson are now organic.
We have started Jesson on a food supplement called Fruit Force. This has been put together by an eminent scientist Prof Gerry Potter. He has recently had one of his Pharmaceutical Drugs put on the market, this is for prostate Cancer managed to get it . I will put the links to his web site and you can read the research he has been currently carrying out.
We are only praying that the combination of Medical and homoeopathic ideas clear the this horrible monster from Jesson's body.
Any ideas that could help, please feel free to go on the Contact Us link and let us know.
Wednesday 14th July
I can finally inform you of the official trephine report.
Unfortunately it was not what we were expecting, and hoping for. Jesson's bone trephine is POSITIVE, after all this aggressive treatment. We sit here totally devastated. We can not believe that there could be still cancer in Jesson's bone so close to having a stem cell transplant. We knew this was going to be a tough one to beat, and we are realising how horrible this is.
Tomorrow we will be meeting with Jesson's consultant, to see what is going to happen. I will update a soon as we know anymore information.
Thanks to everyone for there support, throughout this journey.
Sunday 11th July
It has been a while since our last update, i was hoping that we would be able to let you know more on the Trephine result, unbelievably we are still waiting!!!! If you have not been reading up 4 weeks ago Jesson a bone marrow and trephine test, the marrow was clear, but there was something in the trephine that needed further testing, and we have had an agonizing wait, I hope we will be able to let you know what is going on very soon, we are praying it is clear.
We have been to Nottingham City Hospital to meet with our radiotherapist, he was really nice to Jesson, and Jesson took it all in his stride. We have had a letter from the Hospital to say that the tumour in the leg is an unusual shape, we needed an MRI, this took place on Thursday, Jesson was supposed to get a general anaesthetic, they really tried to convince me he would be scared of the noise and he would not lay still, i guess they didn't know Jesson, and conditioned these children become! he was racing around the room and the nurses were looking as if to say "no way is he going to keep still", but sure enough he lay on the bed perfectly and after the 30 minute scan he opened his eyes and said "that was a lubly scan, I'll do that one again" so 2 chocolates as a reward from the nurses, and of we went. We should get that result when we go back to Nottingham.
Friday we had a spectacular day at Hatton farm world, it was great ideal for the little ones, bouncy castles, animals, skittles, trampolines, and an enclosure where over three hundred Guinea pigs lived, Jesson had a superb time along with Kesia, Nan Nan, and Mary round the bend.
We have just been for dinner with Nannie Ros, (Nannie Wos as Kesia says) It was fab!! We had a good time on the park as well.
Anyone overseas readers wondering what a Reliant Robin is it is an unattractive three wheeled car. But Jesson thinks they are really cool!
Pray for Jesson clear Trephine, and hope that unusual shaped tumour is something less sinister than Neuroblastoma. I will update as soon as I know
Wednesday 30th June
Here we are and another month is almost over, time is passing so quickly.
This past week has been full of normal activities again, and Jesson is running around keeping busy, with all sorts of things.
On the medical front, we still do not know any more news as far as the trephine result, we are still anxiously waiting and hoping only for good news. On Friday last week we went in to the LRI for an EEG, this is a test to check activity in the brain. As Jesson has had a Stem Cell Transplant, we have to ensure that no other damage has been done.
Today we are going to Nottingham Hospital, this is our first meeting with a consultant Dr Sokel, and he is a going to discuss Jesson's radiotherapy. I will do a brief update to inform you what has to be done, I hope they go ahead quickly, as the treatments will be done daily, it will mean traveling to Nottingham everyday for a couple of weeks, and as you all know we have quite a hectic social life!!!
Last Sunday we went to Castle Donington Race track to see some saloon car racing, these tickets were given to us by Wishes 4 Kids, Jesson had a great time he was running and walking around the track pretending he was one of the cars. It was so noisy, Jesson still made himself heard! And Kesia fell asleep! It was a good atmosphere, and there were fairground rides, so you can imagine that went down very well.
When were walking around Jesson was so funny he said, in his booming voice, that he thought the cars were fantastic, but he still would just love a Reliant Robin, we tried to compose ourselves and intently say "really sweetheart". How cute, he has mentioned this to us before, so I guess he is really serious!
After all of the excitement we went out for Sunday lunch, on the way home we did a short summary of the day and Jesson is adamant he still wants a Reliant Robin, and a brother called Steven!
Sunday 20th June
Monday we went into clinic for a visit to see Jesson's consultant, Jesson is very well at the moment and we are still waiting to hear about Radiotherapy. The suggestion by our consultant was to try to regain as much normality to not only Jesson’s life but also our lives, so this week we have managed to get Jesson to sleep in his own bedroom on his own, this is the first time since last September, he has been a star, he was a little scared to begin with, but he seems very happy now.
We have had a very good week socializing a little, and generally having a good time, Wednesday we got together with Jesson's friend from ward 27 Hannah Edwards, it is great to see them together and both looking so well.
Thursday Jesson had a Bone Marrow and trephine aspiration, it went ok, we will have to wait approximately 10 days for the results. He was bit sore after, but soon was back to his normal, after a day or so.
Friday we had an amazing day out organized by Dave Ford. This all started a couple of weeks ago, when Jesson was watching Little Bill a kids TV program, Little Bill went fishing on a boat with his Dad, so immediately Jesson said ' I want to do that in a boat with a life jacket', so straight onto the case I went to work to see what I could do. Dave arranged for us to go on a boat, on Groby pool. It was fantastic; everyone was great Jesson went on the boat with, Steve, Steve, Ashleigh, Gan Gan, and me. What a day! it was so much fun, we all really had a good time, I must add I caught five fish my Dad caught two, they said it was beginners luck! At the end of the trip Jesson was presented with a fishing rod, and a certificate, he was really happy.
Saturday was Kesia's 2nd birthday we had a great time JJ was in his element playing and helping to open pressies. We had a little tea for kesia she loved it.
Finally today we went to Twycross Zoo, it was really cold, but it didn't stop us enjoying the day. There is a small fair that Jesson couldn't wait to get to, both Jesson and Kesia were running around having a fab time.
Thanks to everyone, who has helped in any way.
Thanks to all the people who made the fishing trip possible.
Sunday 13th June
It has been two weeks since the last update, some normality is returning to our lives. I have had a difficult couple of weeks mentally and emotionally, I think this is because Jesson's treatment is coming to an end, and we do not know how things will go. I think I have got to grips with this now, and the motto is, Think of only today, worry about tomorrow when it comes. As a parent to a child with cancer you develop this skill and realise how every moment is to be cherished. For instance when Jesson walks, runs laughs and shouts these are miracles that happen to us everyday.
Jesson has been very happy over the past few days, he is really excited about Kesia's birthday on the 19th, he choose to buy her a fimbles scooter he loves it, I wonder why he choose it !! His humour is endless, his jokes are improving thank goodness!! I was getting tired of the false ha ha ha, they are getting better, thanks to the ones added to the guest book, any more good ones are welcome, the sillier the better.
On the medical front we are in clinic Monday to see our consultant, I guess we will discus radiotherapy, at the moment we think it should be on his abdomen, and leg where the remaining tumour is.
Thursday this week Jesson is in the LRI for his Bone Marrow and Trephine test, this is done under general anaesthetic, we are praying that the trephine is clear. the results will be a couple of weeks.
We are waiting for another hearing test, as Jesson is getting even louder we expect his hearing has deteriorated even more.
Thanks to all of my family and friends who have helped us over the last couple of weeks, we couldn't do it with out you.
Sunday 30th May
On Tuesday we went into the LRI for Jesson's MIBG , with this scan Jesson has to be very very still for an hour, I decided that we would try with out sedation, as previously it has made Jesson very sleepy for a few days afterwards. There is a series of two scans, on day one Jesson is given a radioactive injection, followed by the scan four hours later, Jesson was fantastic he lay perfectly for the full hour. During the scan I could see the scan on a computer, at this time I could see a hot spot on Jesson's right leg, I felt totally gutted, I was really hoping I was wrong. The following day Jesson had the second scan, once again he laid really well watching Brother Bear, great film i highly recommend it! The rest of the day was taken up by a blood and a platelet transfusion, and lots of playing with his friend Adam. Since this time Jesson's legs have improved and he is gaining strength day by day.
Friday we received good news and bad news. The formal MIBG report, after all this aggressive treatment Jesson still has a spot in his leg, but the abdomen and spine is 'visibly clear, the reason I say this is because once you are cluster free of NB, it is no longer visible on scans, there can still be bad cells hanging around, this is why they often relapse. The next stage we have to think about is radiotherapy.
Today has been a totally fantastic day, Jesson has been bounding with energy, playing laughing, it has been great!
We have been back to The Billy Bates Fun Fair, we were escorted by Billy while both Jesson and Kesia were running from ride to ride, is was so much fun to once again see there smiling faces having such a good time.
One very touching moment this week, if you have been a regular reader on Jesson's web site you will remember Dave Lawrie who ran in the London Marathon. Dave donated all of his sponsor money to Jesson, and gave him his medal. We were honoured and touched by this. Jesson thinks "it's cool" and he has visited all of the neighbours parading around with his medal, we tried to get a good photograph of Jesson wearing it but he was sooo excited he pulled funny faces on all of them!
Sunday 30th May
Finally after the previous weeks, we do not have much to report. Jesson is recovering well; he has been eating and drinking a little. When we first arrived home he was eating well, but it has dropped off a little.
Tuesday we went to the LRI for platelets, fortunately JJ didn't have any adverse reaction, Jesson still has to have a regular blood count done, and he could be blood dependant for six months after the Stem Cell Transplant. Jesson's tummy has settled, and we have gone back to his normal NG feed, he is still feeling and being a little sick in a morning, we were expecting this, a lot of the NB patients suffer long term sickness as the treatment affects there hearing quite profoundly, Jesson has definitely lost more hearing, we will find out soon if he needs hearing aids in the next couple of weeks, JJ said he would really like two!
We still have concern on Jesson walking; he has a very peculiar walk that he has adapted. Next week we have an MIBG scan this will indicate if there is any residual disease, this will light up on the scan as a hot spot. I do not like this scan as Jesson normally heavily sedated as he has to lie very still for a whole hour, he might be able to do it without sedation if we get a good DVD, and it really knocked him around last time. Guess we won't know any results this week.
Once again we hope Jesson regains his strength, and keeps up with the good progress.
Jesson is into jokes if you know any good ones please leave them in the guest book.
Sunday 16th May
(+19 days post Transplant)
On Monday Jesson's I V drugs were stopped, this has made life a little easier, and hopefully Jesson's tummy will feel a little better, the huge amount of antibiotics, anti viral and anti fungal drugs have played havoc with Jesson's little body.
Tuesday Jesson was definitely a little brighter, he wanted to play and even mentioned leaving the room, as Jesson's bloods had picked up we went out of the room for half an hour, we had to wait until the ward was empty, it was great just to see Jesson happy and wanting to play.
As the days are passing we are slowly forgetting how horrible it was for Jesson, apparently Jesson was really good and was not too poorly, you could have fooled me!! But I guess we were lucky as he has recovered quite quickly.
Jesson is regaining his never ending humour, the loud voice is booming as loud as ever!! Great.!
As the week has gone on Jesson has wanted to leave the room on a regular basis, during this time he has developed some great friends, Adam, Ryan and not forgetting Tim he is one of the Dads! Jesson has sat on his bed as regular as possible, getting all the latest on Power Rangers, Transformers, and Cartoon Network. On Saturday we finally got to go home, and guess what, Jesson didn't want to, he wanted to stay and play with his friends!!! After persuasion we managed to get home at lunch time.
It is fantastic to think we are home as a family leading a strange kind of normal life again. Jesson has to go back in to LRI to have his blood checked, as he needs lots of blood and platelet transfusions.
Jesson is struggling around walking as he has not walked for three Weeks so we hope his little legs get better soon. He is now on only twelve lots of medicines a day, Wow! We hope this will reduce soon as my life revolves around syringes and medicines.
Once again I can only thank the wonderful nursing staff for looking after Jesson so well.
Oh yes if you do not already give blood please make time.
Sunday 9th May
At the beginning of the week Jesson was very poorly, he was still unable to swallow, and he had blood stained saliva constantly coming from his mouth, it was really horrible to see him in so much pain, and discomfort. Jesson was unable to talk, and communicated by grunting and pointing. His bottom was so sore and the skin was broken, all of this was caused by the high dose chemotherapy. The nurses have constantly been looking after Jesson, it is amazing the amount of care and support he has needed, there has hardly been enough hours in a day to give him the amount of IV drugs he has needed.
At one point during this week we really could not see light at the end of the tunnel, but as before, Jesson has made a miraculous recovery, from this punishing harsh treatment. Slowly he started to talk; at this point the morphine was reduced, and eventually stopped. Today he has been amazing he has been awake all day, and constantly wanted to play. His voice has got louder and louder.
Kesia came in to visit today, as Jesson bloods are recovering very well. We can not believe it has 2.5 neutraphils, this is amazing! It was super to see them play together, JJ got off of the bed with his drip stand to play with her, they were laughing and giggling, it was great to see them together.
The next thing we have to concentrate on is Jesson's NG feed, as the chemo has stripped the lining of his gut, he can not tolerate his normal feed, so we are trying something else that is not as heavy. This could take along time to heal, but we hope Jesson continues this amazing progress.
We would like to say a huge thank you to the fabulous nursing staff at the LRI.
Keep the messages rolling in; it's great to read them!
Sunday May 2nd
This week has been very up and down. Jesson was officially isolated on Tuesday, the reason for this was all his blood counts dropped and he became neutrapeanic. We are only allowed limited visitors, and we have to sterilise everything as Jesson has no immunity due the high dose chemo.
Wednesday we went to Birmingham Children's Hospital, to have the Stem Cell rescue. We went in an ambulance with our nurse Jenny, and two ambulance men who were very friendly. The Stem Cell Transplant went to plan, Jesson was very sick, and slept the whole way home.
Since then the effects of the chemo are really kicking in, Jesson has a streptococcal infection, which is causing high temperatures. He also has mucasitis, oesophagitis, and today his tongue and mouth have swollen so much he has stopped talking, all his secretions are coming out of his mouth as he can not swallow, it is horrible. Any one who knows Jesson will know he does not give up easily, he is making us know what he wants by signing and grunting, he has still raised a smile!
Jesson is so strong and determined, and brave; he never fails to amaze us. Every challenge he is presented with he manages to take in his stride.
Well done Jesson! We love you xxx
Sunday 25th April
This week began really well, we had the pleasure of going to The Billy Bates Fun Fair at Abbey Park, it was fab. Billy opened the fair just for Jesson. We went along in a group, there was Jesson, Kesia, Mia, Kate, Gary, Mum, Mary and Denice. It was like being a child all over again, we all went on all of the rides, Jesson was running from one ride to another, he was so excited and was able to go on anything he wanted with no limits to the amounts of goes, every child's dream! All of the children won a prize, and smiles all round. Billy and his family were so warming and helpful; it made a very special time for all of us.
Wednesday we went back to ward 27 with bags in tow, we have been told that our stay may be between 4 weeks to 3 months. The chemo began very soon after our arrival, for anyone interested the drugs are, Carboplatin, Etopiside, and Melphalan. Jesson started with feeling a little sick towards the end of the day. Thursday and Friday Jesson has started to become sick, he is not eating or drinking now, he is still going into the playroom and chatting to people. Saturday, and today he has become very sick and has a poorly tummy. He has definitely lost his sparkle, he feels unwell and grotty and also sleepy. Anyone who has seen Jesson on chemo previously he has always remained bright and lively but this has really knocked his around.
We will be going over to Birmingham Children's Hospital on Wednesday to have the Stem Cells Transplanted, this procedure should be quite easy, but once again it will make him sick. After this Jesson's blood counts will drop, and this is the time Jesson will become very poorly.
Well this week has gone very quickly. Please once again spare a thought for Jesson.
A huge thanks to Billy Bates and family, it was a great evening.
Sunday 18th April
Just to inform everyone transplant chemo was delayed, due to to Ward 27 being too busy. To go ahead with this kind of treatment Jesson will need his own cubicle, and it was not possible at this time in the LRI. It should be going ahead this Wednesday, we have thought about it for long enough, and hope we can get on this week.
So this week has been phase 2 of having fun, we have been out and about once again making the most, of our time. Bank Holiday was spent at home, relaxing and gardening, the weather was good and we made the most of it.
This week we have been to the Tropical Bird place at Desford. It was really good, we had the chance to look at some of the most beautiful birds from all over the world, and the surroundings are very natural and peaceful, well until Jesson arrived. We went along with, Kesia, Kate and Mia, we all enjoyed looking around. All of the children had a chance to hold the little birds, it was wonderful.
Friday we went to Snibston Discovery Park, this was organised by my good friend Mary round the bend, it was fab, brilliant, and fan dabby dosey, these were Jesson's comments. It was all hands on interactive stuff, the children could touch everything it was real fun for all ages. There was a diesel, and lots of activities outside, that involved water, so you can imagine JJ was in his element not wanting to leave, we were there for most of the day.
I would like to take this opportunity to say a huge thank you to everyone that has made Jesson's week fun. It certainly helps to have all this support from family, friends and the network of people that help in anyway.
Once again please spare a thought for Jesson this week, I feel sure it will go ahead this time.
Sunday 11th April
Words to explain this week, "what a blast".
We have had a really busy week, it all started fairly calm, with the usual chores, like shopping, banking, cleaning ect. Thursday we went to Twycross Zoo, it was fab, we felt like a normal family, doing normal things, it has been such a long time since we have been able to get out to somewhere like this, either due to appointments at the hospital, or being neutrapeanic, or the weather not being too good, we have not managed a day like this. We set off early, with JJ, Kesia, Mia, Kate and Myself. Ensuring to get lost it added about 40 mins on a 40 minutes journey, not too bad eh! The children loved the animals, JJ's and Mia's favourite was the monkey's, and Kesia loved the Dob's (dog's) little prairie dogs, but most of all, the little fair went down a storm, the pirate ship especially.
Friday was organised by a friend of mine Mary, Mary round the bend, as Jesson describes her, she lives around the corner, but the description suits her well, "no offence Mary". We went to Leicester Airport. It was a gorgeous day the weather was so warm it was lovely. We had a tour around with Tony; JJ got to look at loads of light aircraft in a huge Hanger. He organised a short flight with a lady called Sue, she took us over south Leicester looking for landmarks, and we saw the City ground, Aylestone, Fosse Park Countesthorpe, and back to land. Jesson was in his element, he absolutely loved it, what an experience, it was fantastic. I am not sure who enjoyed it the most Jesson or me.
Sunday we went to a really great place for children, it is called Twinlakes, in Melton, we went with a group of very good friends. It consisted of adventure playgrounds, Astroslides, farm animals, pets, sand pits, and the list goes on and on, the children really enjoyed the day there was so much to do, we were shattered at the end of it!
We have had a superb week.
This week we are checking back in to the LRI for Jesson's Stem Cell Transplant, there must be a lot of people wondering what is going to happen so I will try to explain. The reason for the Transplant is to try to irradiate any remaining cancer in Jesson's body. Jesson will get 4 days of very high dose chemotherapy, he will have a rest day, and the following day he will go to Birmingham Children's Hospital in an ambulance, to have the previously harvested Stem Cells put back in. It looks a simple procedure, just to push them into his Hickman Line in his chest, but it is essential he gets them back, because after the huge dose of chemo, the Stem Cells will rescue the body. After Jesson will become very poorly for a long period of time, the stay in hospital could be anything between, 4 weeks to 3 months.
He will be in isolation, we will have to sterilise everything, and give him a neatrapeanic diet, not using the usual kitchen. We are very anxious about it taking place but it has to be done, else the disease would return quickly.
This week we would like to say thank you to Steve and Michael, who organised R Bar on Thursday evening, £ 650 was raised, thanks for your hard work, we enjoyed the evening.
Thanks to friends and family who have been with us enjoying our time.
Look out for Dave Lawrie running around Desford, he is training for London
Marathon, he is running for Jesson, anyone wanting to sponsor him, please
ring 07971 040589 and speak to Vicki.
Spare Jesson a thought this week it's going to be tough. xx
Sunday 4th April
Our week has been rather uneventful, just how I like it!
We have made the most of our precious time left at home. We have a provisional date for the Transplant, it is the 14th April. We will be in hospital between 4 Weeks to 3 months; it will just depend on how Jesson recovers.
With the lovely weather we have been out and about, we went to Knighton Park on Tuesday with Vicki and Mitchell. It is almost feeling a little more normal now, every day activities are kind of how they used to be.Jesson is recovering well, he is running around again, and still making lots of noise it's great! We have been visiting friends and family, Jesson and Kesia have really enjoyed their time. We hope to make the most of the next week, hopefully getting out with the children.
Jesson went in the LRI for a CT scan that went well apart from being sick. When the CT was complete he leapt from the scanner and ran into the Docs room, jumped on her chair, and took control of the mouse on her computer, he was just having a sneaky glimpse at his scan pictures! I think the CT is to identify any remaining tumour. We should get these results in about a week. We also had a urine test this is called a Catecholamines, this detects any of the chemical that the NB releases, we hope these will be on normal levels now the mass has gone.
I would like to say Happy Birthday to Victoria, across the Ocean to a special little girl on her 4th birthday.
Once again thanks to all of our family, friends, and anyone who has supported us in any way, it makes life a little easier, even if it's a smile.
Sunday 28th March
Jesson has made good progress this week; he is definitely getting back to normal. Anyone who was in the in the hospital at the time of Jesson's operation, will probably be wondering whether his voice has returned to normal. I can promptly say yes the volume has returned to extra loud!
Jesson and Kesia have been playing nicely this week, there favourite game is hospitals, Kesia is the sick one who is wrapped in a blanket and wears a NHS cardboard sick bowl under her chin, making very dainty retching sounds, it’s so cute.
A lot of you guys reading this update will probably be still thinking about the Auction on Thursday 25th. This was the last event that was organised by my very special friend Vicki Turner. The Auction was held at the Ramada Jarvis (The Grand) the turn out was huge. I am sitting here trying to put into words how fantastic the night was. The Toast Master was a friend of ours Mike Jacobs, he enabled the whole evening flow with such professionalism. Vicki had managed to collect over 50 things for the auction, the lots ranged from a overnight stay at the Sketchley Grange Hotel to a Tow Gliding Afternoon. The evening was overwhelming for both Ashleigh and myself, I could only keep thinking of the reason why we were all there My Little Jesson.... we would like to say massive thanks to everyone who was involved, and especially to Vicki and Mike.
Apologies to the Jesson Wrocks organisers we were so tired from the Auction we could not make it. Once again a massive thanks to you all.
We have recently met with Jesson's consultant and we have had some of the pathology reports back, it was reported that the chemotherapy had worked well on the tumour, it was mature, apparently this is good, we are very happy to hear positive news. The lymph nodes still had live cancer in them; they were removed and marked ready for radiotherapy. We are now waiting for more scans, and a date for transplant.
We have had a good week at home and hope for some good weather so we can venture out.
Thank you for everyone’s support, we have had a great week.
Sunday 21st March
Friday Jesson seemed to be a little more comfortable. In the afternoon Jesson sat up and started to show some interest in playing. We played hand shadows and did lots of sticking. We watched The Flintstones again, I have lost count how many times we have seen it now! Jesson still could not eat or drink, he has had to let his bowel rest as it has been handled during the operation.
Saturday has been a lot better day, slowly through out the day Jesson has had bits removed, his catheter, cannula, and another line in his hand, and mid afternoon his epidural was out, so finally we were heading back to ward 27.
Jesson was really excited about going back, and leaving CICU. On our return he insisted that he was to travel in his pushchair and not on a bed. All of the nurses expected to see him hooked up to a morphine infusion and fast asleep. After a hour or so he was in the play room, he walked a little, but obviously Jesson was still very uncomfortable. Saturday night Jesson had a lot of pain so we gave him morphine.
Sunday Jesson woke up in pain but as the morphine worked he was up and around, and playing in the playroom, he walked a little better today. In the afternoon Kesia went to play and they were on the bike riding slowly, he never fails to amaze us, he has been up and down the corridor with Kesia playing it great to see them together again.
Operation Update 18th March
On Monday we took Jesson to clinic, we were still unsure whether surgery was going to take place on Wednesday. Later that evening we received a phone call to let us know, that as long as there is a bed in CICU, the surgery would take place on Wednesday 17th March. On Tuesday I rang to check that the plans were still going ahead, we arrived on ward 27 at 1 o'clock.
Jesson was in fine spirits, informing any one he could find to listen that he was having his tumour taken out of his tummy. At the LRI the play specialists have dolls that can simplify how a tumour is removed. It is a little rag doll that has a Velcro front, all the organs are in side and there is a little tumour (a little white ball) Jesson was practicing removing it. Jesson told his surgeon that if he could operate on the doll it would be really easy, as he had already removed the tumours!
Wednesday came and I was still not convinced that the surgery was to go ahead, but sure enough it did. 9AM Jesson fell asleep with his magic milk (aesthetic). Ashleigh and I went for breakfast, and I tried hard to swallow some toast, we could do no other than think of what was happening to Jesson. Theatre kept us well informed and rang several times, to tell us things were going to plan. After an agonizing wait at 3pm, we finally could go to intensive care to see him, he looked at me with those big brown eyes and ask me for a drink of Coke, we were told he was nil by mouth until at least Saturday, he was not happy!! It has been terrible just saying no to someone who is desperately thirsty.
Jesson's surgeon came to see us, he told us that he had been able to remove the tumour, and nodes, there was only a small amount of remaining disease, and this should be mopped up with high dose chemo that is given before the transplant, and radiotherapy. I had only a couple of hours sleep, as Jesson wanted me to keep turning him from one side to the other.
Thursday has been a much better day he slept a lot until midday, and this afternoon he has sat up and watched the TV. Jesson has had an epidural for pain relief, and it has worked very well, but you can see he still feels awful, he has been very quiet. Anyone who knows Jesson if you can not hear him, he is unwell. We hope tomorrow he will improve and be more himself.
Sunday 14th March
Well this week has been a very peaceful uneventful week, I am so pleased to say! we have been at home all week, we had a short clinic visit to talk to Jesson's consultant, the operation is planned Wednesday 17th , scary. We were informed that we should expect Jesson to be in intensive care after his op, and he will remain there until he is well enough to go back to ward 27.
We are anxious about the procedure as it is likely to be a long tedious job, it will be very unlikely to remove all of the tumour. We will be able to update next week and inform you how Jesson is.
Wednesday we went to Southern Fire Station in Leicester, thanks to every one that made Jesson's day, since then everything Jesson has done has been an emergency. Jesson and Kesia had a ride on the Fire Engine it was really great. Both JJ and Kesia had a go at spraying some water, anyone who knows Jesson well, will know that this is one of his favourite pass times, Kesia is following her big brother, I spend half of my time at the sink with them both.
I have to mention the write up in the Leicester Mercury, it is great , a typical day in the Wragg household, take a look if you get time, www.thisisleicestershire.co.uk Anyone wanting tickets for the auction do not forget to look at Events.
Thanks to everyone for all your help and support, prayers for Wednesday please.
Sunday 7th March
This week began with a trip to Birmingham, it was bloods being taken in preparation for the stem cell harvest. We were back in Leicester just after lunch and we had a to visit ward 27, to pick up the GCFS, this is a growth factor drug that stimulates the bone marrow, it helps the body make more stem cells, these are present in the middle of the bone, which is called the marrow, when you have GCFS it makes more immature stem cells grow, and they over flow in the peripheral blood. the GCFS is given in a small kind of cannula in the leg, it is given daily in the evening, and by morning your blood indicates whether you are responding to the drug. There is a marker called CD34 and it has to be a certain level before Birmingham children's Hospital will put you on the stem cell machine. Not all Neuroblastoma children reach the right level as they have had such high dose chemo. Once again it has been a very worrying week as Jesson still has a lot of disease, he definitely needs the stem cell transplant, and with out stem cells the high chemo and transplant would not go ahead. Monday evening was yet another test of my untrained nursing skills, I had to give Jesson his injection of GCFS, it went ok he screamed a little, as it really stings when it goes in, it is horrible what we have to do but it has to be done!
Tuesday was great we had a lovely day out at Knighton park a long bike ride and played on the swings, Kesia has come on so well, she wants to do every thing with her big bro! Once again I had the duty of administering the GCFS it's no fun injecting something in your child that you know is unpleasant.
Wednesday was an early start we had to go to Ward 27 for 6.30 am for blood to be taken and couriered to Birmingham. This was all great fun for Jesson going to the Hospital in the dark, he was amazed when it was light when we came out. Well after all this fun it was Jesson's big day out at ASDA Magna Park . We had the most fantastic day!!! we were treated so special, VIP parking space, all notices to direct and welcome The Wragg Family, Tea and coffee on arrival, and we met a great guy Les Watterson, he organised the whole event, with alot of other very kind people. Jesson was so excited, Jesson was provided with a ASDA uniform in preparation to venture out in a huge ASDA lorry, Jesson was the king of the road. After this we had a tour of the warehouse, and JJ actually had a chance to operate one of the Fork lifts he was thrilled, he never stopped smiling and laughing, it was incredible the happiness and joy on his little face. After this we retuned indoors for lunch with everyone who had help organise this fab day. Jesson was presented with miniature version of the fork lifts that he had operated, he said they were "really cool", I was also given a huge hamper full of goodies including a huge bottle of my favourite Baileys. Les showed us the Wide Screen TV they have donated to the Auction. We are so grateful for such a wonderful time, thank you to all that made it possible.
Thursday was also a very busy day, Jesson's blood reached a certain level that indicates it is time to try and take out some stem cells, it was not guaranteed that it would work, so once again nerves were on edge, without too much detail Jesson had to lay very still on this very complexed machine for over four hours, apparently Jesson was a text book harvest. It was explained that it is difficult to harvest NB children, there CD34 does not go over 30 which makes it difficult, and could take several visits and still may not work out. Mid afternoon one of the nurses informed me that his count
89 totally amazing, we managed it in one visit, we were thrilled. No more GCFS!!
Friday we found out the Trephine result, it was positive. It is not good news, this journey is horrible so up and down!
Saturday consisted of a blood transfusion, and today Jesson has been full of life, obviously had a mad mans blood!!!
As you can imagine a very busy week.
Thanks to every one that has put a smile on Jesson's face XX
Sunday 29 February
This week has been quite odd, we have not seen a lot of ward 27. On Monday we went to fly some falcons, now let me explain, this is what Jesson wants when he grows up, he is going to keep them in his beautiful playhouse!!! we went out with four birds and they were amazing, Jesson really enjoyed it, apart from being very cold.
Tuesday we went in LRI for Jesson's bone marrow this is done under general anaesthetic, two tests were done, a bone marrow test and trephine. Also Jesson had a new NG tube in his nose, so no more worries trying to get him to eat, unfortunately the appetite has decreased. When we were on the ward we had the results from the MIBG, unfortunately they were not what we were hoping for, Jesson still has the secondary tumours in his legs, we were very disappointed and upset, but we have pulled ourselves together and tried to carry on, it has been a difficult couple of days.
We think they are the tumours that have not gone, appose to new tumours, we hope that the chemotherapy with the transplant will eradicate any remaining cancer. The bone marrow results were still clear but we are waiting for the trephine results.
Thursday Ashleigh and I went out together for a meal to celebrate our 6th Anniversary, we had a lovely time together, it has been a long time since we spent time out on our own.
News of the week we have a new edition to the family "Bo" the hamster, kindly given to us by my nephew Billy, it bags were packed and he announced " here you are you can have it you want" I think it was such an emotional wrench for him (not) Jesson is so happy with his new playmate, it has only bit and drew blood three times, good job his platelets were up eh!! it hasn't put him off yet, they haven't been parted yet, he wanted it to go in his bed, bearing in mind Jesson sleeps in my bed, I will leave you to guess the answer, it was no.
Well this week is a big one, hopefully we will get sufficient amount of stem cells in preparation for the transplant.
Sunday 22 February
This week we have been in having more of the routine tests, Tuesday we went in to ward 27 and Jesson had an MIBG scan, this involved putting a canula into his hand, he was really brave, no tears he had magic spray. A special nurse came onto the ward who specialised in giving radioisotope dye, this is given over a certain period of time, the dye is radioactive, this sticks to Neuroblastoma, and enables the radiographer to detect any tumours. Precautions have to be taken administering this as it can give the patient dangerously high blood pressure, so it is pushed in slowly and his blood pressure was closely monitored, the whole time. When all of this was going on I had to have a canula, pretend I hasten to add, it was quite authentic. Dr Jesson Wragg wouldn't let me remove it, everyone thought I had hurt myself, Jesson found it highly amusing. After the dye had been put in his arm, we were warned that Jesson would pass radioactive urine, so we had to take precautions. Four hours later Jesson was given sedation ready for his scan, the effect took hold quite quickly with in ten minutes he was slurring and insisting on staggering around so he could show everyone how he felt!! it took along time for him to sleep, eventually he went off, and slept all the way through the scan, and also two and a half hours after, he was really unhappy when he woke up, eventually we set off home after our routine visit to KFC. When we arrived home Jesson's NG tube was blocked, and we couldn't unblock it, Jesson decided he would remove it himself, he thought it was great, and he had a long look in the mirror, to see how his appearance had changed.
Wednesday was part two of the MIBG, the sedation did not work as quick as the day before, he seemed calmer, and was more peaceful, he still had not gone to sleep on arrival for the scan, he watched Hong Kong Phooey and sure enough tens minutes later he was fast off. The scan consisted of six pictures, and each of them took tens minutes to take, this is the reason Jesson had to be totally still. Once again he took ages to wake up and he was not happy.
On Thursday his bone marrow and trephine test was planned, but unfortunately his platelets were too low to have a general anaesthetic, it is now planned for next week. Thursday and Friday Jesson slowly picked up after all the sedation, he was still tried , and looked very pale. He had a blood transfusion on Saturday. Today he has been lively and ate four ice lolly pops, I guess this will be the new craze of the week, we will be lollied out!!
Sunday 15th February
Monday Jesson was still feeling quite sick. He did not seem very happy, I think it could be the succession of late nights. We managed to escape from the Hotel Royale ( LRI ) at about lunch time, Kesia was very happy to see her big brother finally at home. Jesson ate a tiny bit of dinner, it has been a real concern he has ate nothing really for weeks, and drinking has reduced to me putting the required amount down his NG tube.
Jesson woke up at 8 am Tuesday immediately he asked for a chocolate milkshake, he went on to eat half a weetabix a Burger King, prawn and cocktail crisps, 2 rounds of toast and more milkshake. Sorry to bore you guys with a list of food but we are thrilled, it is amazing what you get excited about these days eh!!! JJ had a blood transfusion, it improved his colour a bit, as he has looked ghastly the last couple of weeks. He also had his hearing test he has not got to wear hearing aids yet, his hearing is only affected with the high pitched sounds, they explained that it could deteriorate in time, but a small price to pay we thought.
Wednesday the guinea pigs arrived home, Gerty and Flick ( that's short for Gertrude and Felicity) both Jesson and Kesia were very excited. Jesson saw Mia his best friend for a short visit, all in all a great day!
Friday we went into the Hospital for a CT scan, Jesson cooperated well as he had to lay very still, the results should show what effect the chemo has had on the tumour in his abdomen, the results will probably be a week or so.
After we had to go up to Ward 27 for platelets, even though the Docs had given JJ pre meds piriton and steroid he once again had another bad reaction, his eyes began to swell, and he had to have a nebulizer, it was scary, but Jesson takes it in his stride, once the nebulizer was complete he ran off coughing and wheezing. With in a short time he was running around creating lots of noise, and racing on his bike. Due to the piriton JJ fell asleep in the car, when we arrived home I took him to bed, he woke up 2 hours later full of beans, I really thought he would sleep all night!! silly me eh! at 1. 45 am Jesson woke me up to say " thank so much Mummy that was really kind to let me stay up to see Cartoon Network" I had know idea, thank goodness it was only cartoons!!
Jesson's comment of the week " please can you put cartoon network on, I know its no good for my brain, but I just love it"
Sunday 8th February
Chemo number 8 was finally underway. Jesson was quite grotty and feeling rather sick all day. Tuesday he was very quiet, he did not attempt to get out of bed all day, he was not interested in doing anything. Very sadly the playstations from ward 27 had been stolen or borrowed!! how appalling we are going to buy another for the ward and come up with some idea how to make sure they can not disappear. That night Jesson developed a high temperature, is was no record breaking high, but as Jesson is so neatrpeanic and his bloods are so low and flat, the decision was to begin antibiotics. We had a very disturbed night as Jesson was hooked up to a heart monitor that alarmed all night, I was exhausted the following day.
On Wednesday Jesson was finally unhooked form his pump, he was very pleased, but still looking very pale, he tried to play, but found it difficult. I could see he was really feeling unwell, we actually managed to get home for a couple of hours, on the way home we went to Burger King it is JJ's new favourite! we were only home for a short time when he began to complain of shoulder pain, Firstly I thought he had knocked himself, with in minutes he was really crying so we gathered everything together a headed back to the LRI. By the time we reached hospital Jesson was screaming, we were going to get an x-ray machine brought up on the ward, Jesson decided not he wanted to go down!!!! typical. When we were called into the x-ray room Jesson jumped off of his pushchair and had a little dance and asked where he should stand, well we were amazed, JJ was definitely in really excruciating pain 10 minutes before and here he was fine, what the episode was we do not know, and we only hope we never know, because this week we have tortured ourselves with thoughts like you can not imagine. This week has been a reminder of what we are dealing with. we hope that the scans that Jesson will be having over the next couple of weeks will only show good results, and we need lots of strength to carry on this difficult journey that is ahead.
Thursday Jesson was really poorly he laid in bed all day. The Docs came to see him several times, he was lifeless and unwell, bloods and urine were fine, so there no answers why he was feeling this way. Friday we expected another bad day much to our amazement once again he was up painting and making robot outfits!! and of course parading around trying to raise a few laughs. Saturday and Sunday Jesson was still feeling the effects of the chemo, still feeling and being sick, I feel so sorry for him he must feel so yucky, but he picks his chin up and carries on and so do we.
Sunday 1st February
At the beginning part of the week Jesson was very lively and energetic. We had a short visit to Ward 27 on Tuesday for a check up and Bloods. Everyone seemed quite amazed with Jessons energy, due to the intensity of this punishing treatment. JJ was playing football with a basketball , playing cars with a huge long track with the aid of Natasha and also set up an assault course. We were informed that were off to Birmingham on Wednesday to meet Sarah Kirk who would be liaising with Leicester with Jesson's stem cell transplant. The weather was awful on Wednesday blizzard conditions on the roads, snow was beginning to slow the traffic down which made us late , when we finally got to Birmingham Children's Hospital, within a few minutes we had bumped into Carol, Dave and Joe, if you were on Ward 27 between October and Christmas you would remember little Joe, ( the only child that I have heard crying for the dinner trolley!!) we are really pleased to report that he is doing really well and was actually standing up with a big smile on his face and they have finally been home... Hurray. Jesson was really confident, he must have felt quite comfortable, in the hospital as he was soon off to find the biggest tractor he had ever seen, and sure enough Jesson was racing up and down the ward within minutes. The weather on the way home was pretty scary, JJ knew nothing about it as he was fast asleep hence going to bed that night at 10.45pm!
Jesson doesn't seem to want to drink hardly anything, we have to give him water down his NG tube, just something else we have to monitor. Friday night I spoke to Denise who organised the sponsored walk with Vicki, I mentioned that JJ informed me that he had a dream that he was driving a train, and it was a beautiful dream, so Denise organised a train ride just for Jesson on Saturday. He was so excited on Saturday it was wonderful just to see his little face so happy, it was great. When we reported in on ward 27, he informed all the nurses that the lady from the park had made his dream come true..... Went in for chemo today, I think we have an all time low on platelets , it was 3. Usually without chemo Jesson would be around 380-400 it was almost as low as it could be, scary.. so he had a platelet and blood transfusion before starting chemo number 8.
Sunday 25th January
Much to our surprise Jesson has been well for another week. We have had thermometers at the ready, waiting for a high temperature. With the intensity of the treatment that Jesson receives the chances of him picking up an infection are high. At present he has 0.0 neutraphils, and his white blood cells are 0.9 , this gives him absolutely nothing to fight any kind of infection. Both Ashleigh and myself have had colds this week so once again we are waiting, for the dreaded high temp!! Jesson has one more chemo in this intense block that will be due on Monday 2nd Feb, we can only hope this will be possible. Jesson went for two bike rides this week, one was around Nan Nans park and the other was around the little park, only under 4's in the area would know which parks Jesson means! The second ride out started with a long trek through the forest ( a stroll through the trees) and ended up with Jesson flying over his handle bars of his bike, fortunately we rushed to rescue him and he only had a little bruise on his eye, I think we will leave the bike at home next time. Chemo no 7 began on Thursday, we were warned by one of the nurses that this would most probably hit him quite hard. Jesson was okay whilst being hooked up for 56 hours, he made the most of the LRI 's PS2 his Game boy, and entertaining the ward with his singing shouting and jokes. After the chemo was complete, Jesson had a blood transfusion and platelets, unfortunately Jesson had another bad reaction he had to have a nebulizer this time to help with this, once again he was unfazed by this. On his return home today he was lively and bright.
The sponsored walk took place today that Vicki had organised, it was totally amazing, the turn out was incredible, there was well over 200 people participating, the weather was fab, bright sunshine all the way. Central Television were there, and we all nervously answered the questions in the interviews. It was lovely to catch up with old friends, and also lots of people attended who didn't even know Jesson. These people had read the story in the Leicester Mercury, how Vicki had decided to plan this for Jesson as she felt so helpless, and this was something that she could do for us. We would like to express are appreciation, firstly to Vicki who has spent a lot of time organising the walk, and also to anybody who contributed in any way Thank You from The Wragg Family.
Sunday 18th January
Chemo no 6 started on Monday, 51 hours until he is unhooked. Tuesday Jesson woke up looking very puffy around his eyes, he looked like the Michelin man, he was very pale, and also felt very sick, he was given extra anti sickness. The chemo seems to really kicking in hard. In the afternoon I noticed a lot of purple marks spreading over Jessons body, an urgent blood count was done. As I imagine both his haemoglobin and platelets were low, he fell asleep at 5pm he was just shattered. Wednesday JJ was feeling really sick, he still managed to sit up and play on his new game boy. he fell asleep at 6pm. He started on a platelet transfusion at 6.15, but unfortunately he had another bad reaction, he started to cough badly and they took them off and they had to give him steroid to help him. Thursday we read the CT results finally after the anxious wait, we discovered that the tumour had shrunk from 11x5cms to 4cms x 3cms x 3.5cms, it appears that none of the other major organs are effected by the cancer, even though it could be stuck or wrapped around vital areas, we will find that out more on the next scan, there was also some lung damage which was probably chemo related, We thought overall good news, it is responding to the treatment. Saturday night we had to go in the Hotel Royal (LRI) for platelets as the last lot were disastrous, this time JJ got blood matched ones which were given with steroid and anti histamine, this time he only coughed a little and small lumps appeared on his head, it did not dampen his spirits he was playing hide and seek at 10.30!! I was shattered by the end of the evening. Over all a tough week but Jesson is still fighting and smiling.
Sunday 11th January
We have had a really great week with not much to report we have been at home. Jesson has been making cakes with Nan Nan and running around with Kesia. Jesson blood counts are dramatically dropping we are back to being very neutrapeanic 1.2 neutraphils that's quite low!! we are waiting for a high temperature. Jesson wants to buy Mummy a Barbie set for her birthday mmm!! Sunday was Mummy's Birthday, JJ had a fab time he bought mummy a head band, and Kesia got Mummy a hair slide. We spent the morning with Nannie Ros, dinner with Mum and Dad, and in the afternoon we saw Dave and Clare with Hannah. Hannah is Jessons best friend from hospital, she also has NB, it was lovely not having to worry about infection, as Hannah does nearly as much socialising as us, that's none !!!
Sunday 4th January
On Tuesday Jesson has had a bone marrow test, this was the same procedure as the staging at the beginning, they put a needle into the spine and draw bone marrow out , and aspirate some bone trephine, this will indicate what effect the chemo is having on the disease. Jesson woke up in pain, he was crying loudly he had some pain killers 30 mins after coming from recovery he was racing round on his bike shouting louder than ever Good ole Jesson!! JJ had a blood transfusion he got home at about 10.10 pm he was really lively! oh yes he had a bag of chips with him, and he has discovered scratchings the man in the chips shop make them especially for him now! New years day went down really well we had Nannie Ros, Nan Nan, and Gang Gan for dinner it was just superb to be all together. Friday Jesson had his CT scan to see what is happening with the tumour. we are very anxious about the results, they will take time to be reported. We also found out today that the bone marrow is clear, we are really happy this is the first positive news since Jessons treatment began, we are now waiting for bone trephine, at this stage it will most likely still be positive. Chemo no 5 took place on Friday Jesson seems really well, he was told off for singing too loud and riding his bike too fast. He was a little sick today, his NG tube came out but it was repassed quickly, he was up and around soon after the event.