We have had a wonderful Christmas Day, Jesson and Kesia have had a lovely time playing with all their new toys.

We were in LRI up until Friday having antibiotics Jesson developed a neutropaenic fever on the Sunday evening, so sure enough off we went middle of the night into ward 27, Jesson was complaining of headache and feeling sick, that we guess were brought on by the high temperature. Within a couple of days of antibiotic Jesson was back to his normal volume, loud!! he has carried on like this since.

Thanks for all the readers of Jesson's web page, unless any problems I will update in the New Year.

 

Wednesday 07 December

Bone Marrow Results

 

Finally after a very anxious few weeks we can finally tell all we know, remembering these are the words of a Consultant, it goes kind of like this:

They won't put there neck on the line and say it's clear, as there is a marker showing called reticulin!! ( spelling) apparently other people can have reticulin, but it is a marker that is present (a neuroblastoma marker)

. That's as far as it goes, that's all we know, to me sounds like a little improvement, that's the way I'm reading it.

We can have another 4 TVD's, they will reassess after these courses.

 

Jesson had been at home for a couple of weeks, Sunday morning before starting chemo he spiked a temperature, he's  not neutopaenic, it's never happened before when his count is up, we think it's a virus.

 I was worried starting round 7 TVD with this temp, but the doctors said to go ahead they have put him on 3 different prophylactic antibiotics, hopefully to prevent him running into problems when he becomes neutropaenic.

So there we go the long awaited news.

 

We have raised just over 4.000 with selling the Silver Angels, now we have Angel Art.

This is based on the Angel Jesson designed, we have a wonderful artist working on these original Canvases, called Louise Almond. Thanks to Louise for the time dedicated over the past weeks designing and working on the new ideas xxx

Look out for the Angel Art for sale coming soon  

 

Monday 29th November

Apologies for the slow update, we have been off line for a while.

We have been waiting for the bone marrow results, we still haven't heard the written report.

We have a verbal comment which has told us "It is still in the marrow!" whether it is worse, better, or the same, we will probably have to wait until next week.

Jesson seems OK, his colour has been really odd!! a pale  grey colour. Whether it is the remainder of the chest infection, I guess it will take time to recover from.

Jesson blood count is on the up thank goodness, he has been neutropaenic for such a long time.

Jesson has been playing  loudly, we went to London on Tuesday, we visited the London Eye, and the Natural History Museum. We had a great time, with our Friends.

 Thanks for letting us come xx

I would like to say a huge thank you to Kerry Wragg, for organising the run on Sunday. There was a fantastic turn out on such a cold morning. Not forgetting our very

 special family and friends that participated.       Well done everyone!! x

MIBG RESULTS

The disease in his legs and hip remained unchanged, there was a mention of the skull as well.

I feel quite flat and disappointed, after the last results I really thought it would be clear.

Anyone out there who has had this experience on TVD please contact me, we are waiting to find out if there is anything else.

 

Sunday 6th November

Jesson was admitted early hours of Friday morning, he was having breathing difficulties. His temperature also very high 39.9 , it wasn't really coming down a lot even with paracetamol. Jesson has had several chest x-rays, eventually after constant monitoring one of the doctors heard crackling and wheezing  on his chest.

 Jesson's HB was down to 6, so that  explained why he wasn't waking up.

With a very low blood count  and a combination of a very high temperature was enough to make him very unwell.

On Saturday the doctor's were treating him for pneumonia and wheezing, Jesson has had a combination of antibiotics, since then his temperature has been up and down, but not spiking really high temps like the day before. He is on oxygen and 2 hourly Neb's, Jesson still trys to be perky!!!

I guess the next few days will tell us what's next.

Bye for now x

Monday 31st October

Jesson has just completed TVD 6, it went very smoothly and in actual fact he had a great weekend!!! can you believe it, hooked up to chemo and had a great weekend. His friend Ryan who also has relapsed neuroblastoma was hooked up to his chemo at the same time. they shared a single bed all weekend playing, shouting and having fun all weekend, double trouble!!

They are both as loud as each other, I guess all the other families on the ward were glad to see us go!!

Saturday night we had a Halloween party, That was a party in the play room where we had been in the day, without the lights on and a little music from the radio, a pumpkin, a torch, and a few games with sweets, Jesson loved it.

Jesson has an MIBG next Thursday and Friday, we hope to see good results, unfortunately you can never tell whats ahead, but he seems quite well at present, apart from the persistent cough.

I guess the following week Jesson will get his bone Marrow and Trephine tested to see what's next, at the point when we have the results will talk to the consultant to see where we go next.

Pray for clear scans, or improved scans, clear marrow, and trephine.

I will update as soon as I know any results.

Wednesday 19th October

Jesson was off a little last week, I mentioned to Ashleigh he wasn't right, Mum's always know best!!! one of  the  horrible parts of this journey is, any symptom can be a symptom of Neuroblastoma, we think every ache pain and moan is the dreaded, wretched disease raising it's ugly head.

 Jesson was not terribly unwell but I knew as a mum things were not quite right.

Friday morning Jesson woke up to a painful throat, followed by an attack of breathing difficulties so sure enough of we went to ward 27, thankfully the super Docs were straight on the case we went for a chest Xray and blood draw, the outcome was croup. We were told the treatment was steroids, so fortunately we came home shortly after.

The steroids worked within the day, and the tightness was relieved  and  Jesson produced a nasty cough.

Jesson being Jesson still managed 2 birthday parties one being his best friends Mia, they went bowling, it was great.

Monday we went off to Alton Towers Hotel, and Theme park. We went swimming, danced, ate good food (even Jesson ate!!) we had a themed room, we had the  Peter Rabbit room, it was like a rabbit warren, with branches coming out of the ceiling, it was very special. We went on lots of rides, and returned home Tuesday evening.

 We have a blood count today to determine whether Jesson is ready for chemo.

I will update as we know any more.

Don't forget the Run/walk at Abbey Park 27th Nov 10am please ring

07862116550 / 0116 2332669 / 01162834561 if you would like to join it.

Thursday 13th October

Jesson is now 6, I can not believe how he has grown.

He is growing into a wonderful considerate, understanding, well behaved little boy, oh and still loud! his teacher's have commented that he definitely seems quieter, guess they must see him early in the morning.

Jesson had a wonderful birthday and party, I was concerned he wouldn't enjoy it because the week before, he decided that he wanted to go home from his friends 6th party.

We would like to take time to thank everyone for the lovely gifts that were sent for Jesson.

On the medical front his blood count is still quite low, and waiting for round 6 of TVD.

Initially  we were told he could have 6 TVD, I have read a report where children have had 9. So I guess we will reassess after no6 and see how things are. My gut feeling is to carry on, because you feel you have a bit of a safety net while on treatment. Because Jesson has had such intense treatment, the treatment options are limited, and we seem to be getting to the end of the road on the IV chemo. So we will wait and see what happens until after his next round.

 

JESSON'S 6TH BIRTHDAY is on Friday, lots of messages for Jesson please!!!!

We are having a party on Friday, he is really excited.

 

We have a family member who wants to do a 10 mile run for Jesson, we have suggested we could split the funds with Wishes 4 Kids, so any ideas or anyone would like to run on the 27th November please send an email.

Bye for now I will update after the big day

Kesia loves school, she runs in everyday, it is lovely to see her so happy.

 

Monday 19th September

Just to let you all know THE PORT IS IN !!! yeah

 

It went in last Wednesday, it has been quite sore, the reason for this is Jesson's veins in his chest are not very good anymore due to the last 4 Hickman lines, one side is totally blocked, the other is still recovering from a really bad infection. Due to all of this, Mr Noar our wonderful surgeon has had to enter the port in the groin, and the "button" as Jesson calls it is on his bottom rib. He says he has an extra bone.

We begin chemo today, this is round 5, we have 1 remaining round, after this time the Doctors will re-stage Jesson and decide what next.

 

We have had a lovely weekend at my Nieces wedding, Jesson and Kesia played all day is was beautiful weather, and the day was perfect, we were with our family and we felt normal!

Jesson is still asking about Ryan "the big boy" my nieces eldest son, Jesson was really taken with him! So, "Hello Ryan" from Jesson xx

 

Jesson is regaining his strength and volume! he has been so loud it's unbelievable.

We are still waiting for TVD 5, it's been delayed due to the infection, caused by the removal of the Hickman line. The infection seems to be getting better, but it seems so slow. We met with the surgeon and consultant, they are planning the port for next Wednesday again, ( depending on the infection). I am hoping they will also do the bladder procedure as it only seems to get worse.

We have had a fun week, we went to  Mablethorpe in a caravan last weekend the weather was gorgeous. We went with our  special friends Claire, Jode and Red. The children had a very special time all together, being noisy, playing on the beach, The seal Sanctuary, it was really great fun all round.

Kesia starts school on the 28th September, she is very excited about going. We are looking forward to seeing her in her little uniform.

Jesson managed one afternoon at school this week, he had lots of fun. But I am concerned because he looks so different to the other children.  I don't see him as different, and certainly does not bother me, he's just my Jesson.

Children can be cruel, and they were all staring at him and a few comments were made, I'm sure it affected me more than him, I want to protect him from everything, because he is just so normal and just my Jesson.

MIBG Results

There is improvement in the last  MIBG carried out last Wednesday. The disease has reduced to in the hip, and at the top of both femurs.

Jesson seems better in himself, and his blood counts are rising, due to this his body is producing puss, so where the infection was, it is now going hard and red again as it is pussing under the skin!! how horrible. I never knew that when neutropenic the body can not produce puss, but now his blood count is coming up, it will go through the normal process of healing itself. We have another week of antibiotics, the port is booked in for next Wednesday, and also the bladder stretch operation, in hope Jesson will hold more urine.

Jesson has mentioned he would like to swim with dolphins, so I have been thinking how we could make this possible.... any ideas welcome.

 

Monday 29th August

Jesson still has pain in his arm, we are still waiting for the MIBG results.

The infection seems to have settled and almost all gone. Antibiotics finish in the morning, and we just have to wait for the results to see if the port will go in.

 We have had a few good days, Friday we went to a Wishes 4 kids race car day, at Donington Race track.

 Jesson loved it, I was really scared racing around corners and high speed. He was screaming and whooping, shouting faster! faster! I was glad to be out of the cars!!!

I will update when we have more news.

 

 

A very brief update, to let everyone know that the Hickman line is out, after a night of screaming in agony! I expected once out, the pain to stop instantly, unfortunately this wasn't the case, the whole of the site is now infected causing Jesson to feel unwell everywhere. Aching all over, sick, tired, he has been really poorly with it, Jesson has been sleeping a lot and complaining of a pain in his head shoulder and arm, we hope it's referred pain from infection, but until tomorrow (Tuesday 23rd) when we have the MIBG we can not rule out progression of the disease.

I would like to see Jesson up and running around again, please keep us in your thoughts as this is an anxious time, scan time is horrible as we only want good results.

Thanks for the on going support with Jesson's Angels.

 

 

RECENT MRI RESULTS

Shows evidence of disease in the spine, but not in the spinal cord, so there are still no answers for the on-going bladder problem, this is good news really we could have done without the disease in the spine!!! but at least there is no spinal compression.

There maybe a procedure to help, it would  depend on the risks. It would be to fill Jesson's bladder with saline, distend it and stretch it, it may help.

Jesson has finished TVD 4, it all went quite smoothly, he vomited only once. Played on his game cube for almost 3 days!!!!

Last night we found out Hickman line number 4 has come out of place, he was having shoulder pain, when I tried to access his line he was complaining of pain , we returned to the hospital for an x-ray, to find it was in the wrong position Jesson will need it removing and replacing!!!!! AAAHHHHH

 We are gutted this has happened again, this poor boy just doesn't need all this he really has enough going on.

We are thinking long line, port, Hickman???. Any feedback is welcome for any experience with a port, we haven't had one of those before.

Jesson is still on antibiotics for a line infection, he starts GCFS Sunday evening.

Jesson will have an MIBG scan at the end of the month, this will be to find out whether his disease has changed.

Jesson's Angels have now raise 1,500 thank you everyone who has purchased one.

We have a slight delay on the leather, but I am catching up hopefully this weekend.

 

Thursday 4th August

Last Thursday we met up with some family members. Two of them Doug and Paula were visiting were from America. It was wonderful to see everyone, and children were on there best behaviour. They were so good until the last half an hour when the children decided to run circuits around the restaurant, by this time everyone else had gone home and no one was bothered.

Friday we went in for platelets, because we were going to Splash Landings Alton Towers. I had a bad feeling on the way to hospital I'm not sure why. But sure enough just to add to the day Jesson had a huge reaction, he was swollen and a pinkie purple rash all over, he looked dreadful and we were very worried. The reaction took place at around 1 o clock he was given lots of  drugs, Jesson was very quiet.

By 8 o clock in the evening at Splash Landings Hotel he was swimming and splashing  the pool!!! go Jesson.

Thanks to Wishes4kids we have had totally wonderful weekend Alton Towers was fantastic and the Hotel was really good fun. It was all themed with pretend sandy beaches, on the floor. Musical lifts (Hawaii5-0) everyone joined in   dancing in the lifts.

We had a truly magical weekend.

Jesson starts chemo TVD 4 on Saturday, he will have an MIBG 12- 14 days days after this chemo. We are praying that disease has reduced this time, he remains well and happy.

 

We still have the bladder problem, this has not been resolved with the new medication. We now think that it is possibly a neurological problem.

 

Any outstanding money for Jesson's Angels please forward cheque ASAP.

Please Keep purchasing them, we are trying to raise as much as possible for Wishes4Kids and the Neuroblastoma Society

 

Wednesday 27th July

Jesson seems to be doing well, apart from a few issues that I have been worrying about. Jesson seems to be suffering with a severe bladder problem, he is so frequent that it's really getting on him down (14 times in 2 hours!!!) I have spoken to the hospital several times, and we have no real answers.

 He had this same problem when he was really poorly, when he relapsed back in April this year, I am very anxious the disease could be spreading further throughout his spine, but until the next MIBG after round 4 we will not know the cause.

Jesson had an ultra sound scan Monday, to see if there were and obvious tumour pressing on the bladder, there was nothing apparent, everything appeared normal. The urine catocholomines VMA 9.1 (normal is lower than 7) was a little lower again, this is good. He remains well, and loud and very playful.

Jesson had his 2nd transfusion of blood and platelets last Thursday, it was like a party on ward 27, Jesson and his friend Ross, they were awake until 11pm, viewing there best films and eating sweets and crisps.

At the weekend we are going to Splash Landings at Alton Towers, for 2 nights, with Wishes 4 Kids, much to our surprise, Jesson's friend Adam from ward 27 is also there, so I guess things will be fairly wild!!!!

I will update when we return home.

 

Thursday 14th July

We have been at home since yesterday morning. Jesson has been really lively, even on his chemo no sleeping he has  been really loud, he was asked several times by his nurses to turn the volume down!!!!  I don't think there is one if you ask me.

 He has been out and about even yesterday, he was home a few hours and he was asking to go to Mia's, he was there for tea and returned home late (7.30pm). Today he was playing and splashing around in our friends pool, we used cling film and loads of waterproof plasters, it was only very slightly damp, I know at some centers they do allow the children to swim, unfortunately ours does not fall into that category. Any ideas for covering Hickman lines please leave them in the guest book.

Jesson's Angels are going well, keep the orders rolling.

my aim is to raise 2,000, after that I will change the idea, as this one is very time consuming.

Don't worry I will always keep a few in stock!

 

Anyone who is familiar with catocholamines, they are looking better, the normal ranges are in the brackets. This can indicate how active the tumour is.

noradrenaline 40  (1 -140)

dopamine  0.6  (0-0.8)

vma  13.5   (0-7)

hva    9.1  (0-10)

please keep the good wishes in the guest book.

Bye for now Helen

 

A quick update.

The MIBG official report showed there was reduction in Jesson's spine disease. and the shoulder wasn't lighting up,. One side of the marrow was clear, and other is still showing  evidence of disease. Jesson's blood count took longer this time, is wasn't as harsh on the platelets but the neutraphils took longer to come up. Jesson started his chemo TVD Wednesday. He has felt a little sick this morning but he remains lively and well.

 

On the social front Jesson has been very busy,  Jesson's school fete was on Saturday, he was camping in the garden with Dad and Kesia, this  was exciting scary and great.

 Sunday we were at the Royal Show in Warwickshire, this was an agricultural show  we were VI P's for the day with JCB, we watched the dancing diggers and an had lunch with JCB, it was a really special day. the dancing diggers are so entertaining.

We will be in hospital Sunday evening to Tuesday late, this is for the 48hour infusion.

 

Any Angels ordered will be posted out shortly I am polishing, clipping and filing, as fast as I can.

Thanks for all the messages, we love to read them all.

 

We would like to send our love to Colin, Gail and Shannon, as they have lost there little boy Arran. He was a brave little boy that knew nothing else apart from being ill, not that you would have known, he always smiled and looked so well.

 

MIBG RESULTS

 Jesson's last scan results showed no change, there are still areas of Neuroblastoma lighting up in his skull, shoulder, spine, pelvis and legs.

We are extremely disappointed that it has not  gone from any areas,  on the second scan I could tell it was still in the same areas as before, so I wasn't unduly shocked.

As Jesson appears clinically well, I guess they will carry on with this chemo as long as he remains well, and his platelets keep coming up. He is getting close to the 3rd cycle of TVD, as we wait for the bone marrow results, we hope this is clear or stable, if it's progressed they may suggests to stop chemotherapy.

 No more Medical info.

We have been to Digger land with When you Wish Upon A Star, we all had a lovely time time. Jesson had a great time playing and driving diggers. 5 years and over are allowed to drive the vehicles.He was really good and manoeuvring the buckets and moving the earth from a hole to the mound , he was so pleased with himself. Jesson has decided he is going to be a construction worker when he grows up!

 He ran around with lots of energy and not too much discomfort. On Sunday we went to South Shields Beach and funfair, we had great weather again, and spent lots of money on rubbishy toys, who cares!!!!! It was rather a long journey home 6 hours, we had to call out the AA, our car decided to go slow, literally no faster than 57 miles an hour all the way home. We have some kind of fault, that we need to sort out.

 The next plan is camping, and fishing. This is Jesson's latest request, with Uncle Bill and Auntie Lia, and not forgetting Mummy  Daddy and Kesia.

Keep the messages coming, I read them daily.

We have just had 500th message in the guest book!

I will keep you all posted

Helen

 

Tuesday 21st June

Today Jesson has had his first part of his MIBG (radioactive bone scan) Me being me, sat at the side of the radiographer, I could see tumour light up in his legs at the tops and in the skull, I hope my guess is totally wrong and it's clear of tumour, but it was quite obvious, he will have the second part of the scan in the morning. We won't know anything for a week or so, we really hope there is an improvement from the last scan. Thursday Jesson has his bone marrow aspiration under GA,  sleepy medicine, as Jesson calls it. The results for that will take a couple of weeks. After these tests results decisions will be made again, hopefully we can carry on with TVD.

 

Tuesday 14th

Jesson had platelets and blood, it was a long time waiting around but he was looking a little better after. Prior to this he was so pale, and he is losing weight quite quickly.

I have started trying to add cream to milky drinks, and frying his food if we can. His little body and legs are just so thin.

Friday seemed to be the changing point for Jesson, he was back to being very loud, lively, shouting and demanding Great!!!! it took him a while to pick up, he is also eating better.

The weekend was just fab Kesia was 3, and they both had such a wonderful time playing and running around the house. Thanks to everyone for the lovely presents that were sent to kesia.

 

Friday 12th June

I have felt so unwell and have been vomiting a lot, Jesson seems quiet and unwell.

By teatime we realised he would have to go in, as he could not hold anything down. We were isolated and considered contagious!

Sunday morning I'd had enough! I decided it was time to go home, it was a good decision Jesson took his medicines and held them down, he had totally stopped eating and drinking, I just knew being in hospital he would not eat or drink.

 

Thursdays 9th June

We have been out with Russell ( Wishes 4 Kids), we have had a wonderful day Jesson really enjoyed, racing around on an army tank. I was having eggs, especially when they were speeding around with him sat on the top. He was having such good fun exploring touching all the buttons, he even had a chance to move the gun around! 

In the afternoon I began to feel quite sick and unwell.

 

Tuesday 7th June

Jesson has completed round 2 of TVD, it all went quite smoothly apart from being very sick and unhappy on Sunday. Everyone who knows Jesson well, will know it takes more than that to hold him down 10.30pm he was running up and down our road shouting and replying to his own echoing voice!!! Go Jesson....

After returning home he is back to his loud, bossy, demanding wonderfulness, I am so grateful to still have him making so much noise and constantly making us laugh.

He went back to hospital today for platelets, as I have previously explained since transplant they are very low. All went smooth and no bad reaction to the platelets.

Jesson will be due scans at the end of the month. This will be the time that we decide whether we carry on, or have to rethink.

 

Friday 3rd June

Hello everyone, we managed a fantastic weekend in Skegness. Yes the sun was shinning, and we were out and about all weekend. We went on the funfair, and on the beach several times. We met up with some very special children and friends. Jesson enjoyed meeting up with all of his friends, especially his special friend Holly and her brother's and sister's. What a blast we had. We all managed to go on the rides, and we laughed soo much, it was just what we needed.

We took Jesson and Kesia  to a children's disco, Jesson danced and played all evening, he finally went to sleep at midnight, he really enjoyed himself.

Jesson started chemo on Monday evening, his platelets had gone up to 39!!! I was sooo happy to see them lift a little.

Wednesday JJ had a blood transfusion, we were at the hospital until 10pm.

Friday evening Jesson will begin his 48 hour infusion of Dox and vincristine, he is looking forward to his sleeps at the hospital, how bizarre.

 

Thursday 26th May

Jesson is still well, he is getting a lot of pain in his right foot, we are waiting for an MRI. Doing this we will be able to detect any disease, and be able to give Jesson some radiotherapy, this will help with the pain he is getting from this area.

We have started him back on  morphine, and he is not happy he hates the taste, but we have said eventually he is able to take the MST which is a slow release morphine, but it tastes so much better (really yummy is Jesson words).

I have found this week particularly difficult as I can see how quickly the disease is coming back again.

 unfortunately Jesson's platelets are not coming up, it is 28 days since his last round of TVD, he still only has 25 platelets he needs at least 80- 100 ( so says the protocol)

After talking to our oncologist today we have been informed that TVD hits the blood count very hard on the first round, and not so bad on subsequent doses, so I think we will have another go to see what happens, Jesson responded so well to the last round, we only hope for the same results again. We are scared this could  make Jesson totally platelet dependant, but we know without it, the disease will return very quickly. We only hope we have made the right decision.

We are hoping to go away for the weekend, and meet up with the other parents from ward 27.

Sunny Skegness is the destination, so watch out if you are  around, I guess you will hear Jesson and the gang!!!

Sunday 22nd May

Sorry for the delay in updating.

 We managed to get away for the weekend, we had a magical time. Jesson was really well, and there were no problems, apart from the predicted hour platelet transfusion ended up  a four hour transfusion!!! the platelets for some reason would not go down his Hickman line, honestly I sometimes think things are against us. We arrived a little late, but that was fine.

Jesson and Kesia met up with their cousins George and Annie, whilst we were away. Jesson has not stopped talking about them. We had such good fun playing mini golf, bike riding playing on the beach, and all the fun in the caravan.

I feel blessed everyday to have Jesson, who would have thought a couple of weeks ago, when his pain was so out of control I could barely touch him, that we would be able to take him away and have so much fun.

We have had a good week, Jesson has been off of morphine for a week, and was due chemo last Thursday, unfortunately his blood counts were not up. For all the others who understand blood counts, Jesson needs 1 neutrophil and 100 platelets, to begin his second round of chemo TVD.

On his last blood test his count was 0.8 and 25 platelets, so we hope chemo will start very soon, since transplant his platelets have been so low and slow to recover, at his best he only has 100 platelets. 

He is having some discomfort as he has started to limp, and complain occasionally of leg pain, and I  know well how unpredictable this dreaded disease can be, one day can be OK the next day the pain can be back worse than ever.

I will send more blood to the hospital tomorrow, and hope chemo can start very soon.

I will add photos from our weekend break.

Thanks for the messages keep them coming, as Jesson like to hear me read them.

 

Tuesday May 10th

 

Jesson's 4th Hickman line was placed on Friday, he was in theatre for just over an hour.

Jesson was up and around quite soon after his return to the ward. The line seems to be working well.

Jesson has had a good few days, still taking his morphine and remaining lively and happy. We are now waiting for his blood counts to recover, and they will carry on with the next round of chemo TVD. After this next round they will rescan to see whether it has reduced the disease in his  bones.

We have booked to go away at the weekend, but it all depends if Jesson's blood counts have recovered enough to begin round 2, if they have we will be away at the Leicester Royal Infirmary, a little different to the plan but we know the importance for Jesson to have this treatment.

Bye for now, I will update as soon as there is any news.

 

Friday  6th May

 

Just to reassure everyone, the Guinea Pigs Gerty and Flick are well, and very happy.

They have been played with today, without too much excitement.

 

We have gone from one problem to another, Monday teatime the 48hour infusion began, Jesson was nauseous and a bit unhappy. Tuesday we noticed that his neck and ear was red not thinking too much about, it we carried on regardless, as all cancer parents know they have some very unusual side effects one being hives and redness of the skin. Jesson's chemo was stopped his Hickman line has moved and not working. He is back to theatre today to have yet another new Hickman line. (Hickman no 4!!!! it may be very difficult)

  Jesson's pain seems to be under control at the moment, he is still on morphine, and we hope the chemo is working.

Thanks for the new messages

 

Monday 2nd May

We are back in today for a 48h chemo. We hope it gets to work very quickly and and the pain starts to go, we just want to see Jesson back to his normal loud little self.

 

Thank you for all the messages in the guest book, it is great to read them I check everyday for new ones, and read them to Jesson. He thinks it's really cool (Kesia will say it's tool)

 

Monday 25th April

Jesson managed to get his Hickman line back in, and I was feeling all very mixed up whether it was right to be going ahead with more aggressive chemo, thank goodness the line went in, Monday night Jesson started complaining of tummy ache.

Tuesday morning he had been up all night screaming, rocking and crying in pain, when we took him in to get him checked over by the doctors, his pain was so bad I have never seen him like this, the pain was now everywhere he wouldn't allow anyone to sit on the bed or touch him. Everywhere  was so painful. The docs gave him 2 lots of extra morphine, and he was still no better, they suggested maybe MST a slow release morphine would be a better option, this still didn't help the pain. His tummy was distended and so hard, they called over the surgical team to assess Jesson. We were booked straight to ultra sound that afternoon, in the time we were waiting Jesson was hooked up to a morphine infusion, as he was still unable to sit up or move because the pain was so bad. The morphine started to help after being turned up several times .

 

We were expecting a huge mass in his tummy, but fortunately  there was nothing, there was nothing obvious showing the cause for this terrible pain. We know why his back and other bones are hurting but the tummy was proving a mystery. As the week went on he was slowly becoming a little easier, as they turned  the morphine up. Thursday was the start of the 5 days of Topotecan chemo .

 

Friday was a really bad day we received the devastating news,  Romaney Fugill pasted away. Romaney had been fighting NB for over 12 months, she was the sweetest little four year old ever. We were so upset and our hearts and thoughts are with her parents Alan, Ellie and little sister Amara.

Saturday Jesson was in hospital again for chemo and antibiotics as he has been spiking temps all week, Jesson has started being sick and feeling the effects of chemo. He also needed a blood transfusion, we didn't leave the hospital until 10pm he was shattered, and he wouldn't let me lift him as the pain was so bad, he crawled up the stairs whimpering, I felt so helpless, it has really hit me how sick our Little boy is.

Sunday was a better day, but Jesson was still being sick every time he ate and drank. He was at  the hospital most of the day, he returned home to Uncle Bill Auntie Lia and cousin Billy. He was having a great time playing Lego and playing with the Guinea Pigs, but it was all brought to a very sharp halt, the Guinea pigs decided to bit through Jesson's line and was licking the morphine, once again they have survived, I have heard of cats with nine lives, our Guinea pigs must have double!!!!

Sunday 24th April

 

It was such a wonderful start, we went to Wicksteed Park with Adam and his family, we met Adam last year on ward 27 (oncology). We had a great time with his very special family. Jesson did not have any pain killers all day, he was great running and playing, chase the kite, football, golf ect.. how unpredictable this disease can be!

 

Update

Just to let everyone know the Hickman line has not happened!!!

Jesson's operation was cancelled due to an emergency. We went for the scan on Jesson's neck to see where the line could be placed, unfortunately because Jesson has already had two lines,  his veins are not as they were, Jesson will have to undergo further tests to find the best vein. I really want to get on now, but what we want does not always happen!!!

There are no medical plans, we have to wait for Monday, when the Docs can have a meeting and discuss Jesson's veins.

He has had a good few days, and we have been able to keep Jesson out of pain enabling him to play and have lots of fun.

We are going out for the day today to Wicksteed Park, I guess they will have a great time!

22nd April 2005

Yesterday was 1 year since Jesson's Stem cell Transplant, I have read many times that a lot of Neuroblastoma cases do not make it past 1 year post transplant, I should say we are lucky.

But after our meeting yesterday with the oncologist, he explained the bone marrow and trephine is positive for cancer.

There are 3 options they are,

 
  • To opt to take Jesson home with no more Hickman line and good pain medicine, Jesson may last between 6-12 weeks, as the disease is so widespread.

     

  • The next option is go home with oral Etopiside, this would hopefully take away his pain for a while he would probably go on for 6-9 months.

     

  • The last options is a more aggressive option, which is have a Hickman line replaced, trying a newer combination of chemo agents, this will mean more hospital, hair loss, sickness, and probably a whole lot of side effects.

     

Unfortunately there are no statistics to say this is any better than the option at home with oral chemo. As the disease that reoccurs can be very aggressive and it can work differently to how it did originally. 50% of Neuroblastoma relapses do not respond to treatment.

As I have said before we are not ready yet to give up, everyone has a different opinion on this, and remembering we have Jesson think about.

Our decision is to replace the Hickman line and try a couple of rounds of the IV chemo we will see how Jesson tolerates this.

We are preparing for our over night stay in hospital,  Jesson is having his Hickman line replaced today, he is on an emergency list so it could possibly be cancelled,  we are expected in at around 2 o clock to scan Jesson's chest,  he has had 2 Hickman lines already they need to check his veins to see if they are good enough to proceed.

 

After all the medical details, Jesson had a good day yesterday, he was up and around without a lot of pain medicine he was able to play with Kesia and his very special friend Mia. It was great to see them digging and tipping the earth all over the garden, the Guinea pigs were also involved they were apparently on a fairground ride eeeekkk!!! 

 Kesia had her wheelbarrow transferring soil from one area to another, our little dog Tilly was also in the game, only I think she had the wrong idea, as she was biting the children clothes and legs, she is so sweet but very naughty!!!

I will say bye for now, and only hope we have made a good dicision for our special little boy.

21st April 2005

Hello

Jesson's pain has been up and down this week, the disease seems to be progressing very quickly from not too much pain, to pain everywhere, legs, pelvis, back, tummy, head. It is scary how quickly it has all changed. His eye seems swollen which is also horrible, as I have read so much about Neuroblastoma  this is one of the places it can go to. This area didn't show on the scan but this terribly aggressive disease can progress in days. We need to start some treatment very soon.

We have decided to try some more chemo therapy, it all depends how Jesson tolerates this  because he has had incredibly aggressive treatment last year, the chances are it could make him very ill. But at this moment in time I am certainly not ready to give in  just yet !!!!!

Jesson is a fighter, and I know he will be so brave, but we won't let him suffer too much and if there is a time he's had enough then that will be the time to stop.

The chemotherapy is called TVD topotecan, vincristine, doxorubicin (excuse spelling)

This chemo combination has had some good results at holding the disease, we hope Jesson little body can take some more.

We have another meeting this afternoon with one of the consultants to discuss Jesson's treatment again. Jesson's Hickman line will go in either Friday or Monday morning. This will be under yet another general anaesthetic.

I will update when I have more information.

 

17th April 2005

As you have read on the 11th April 2005, there has been another change in our lives.

We now have to think of treatment that will only give us time with our little boy, there are no curative options.

We hope that Jesson will start a new protocol called TVD topotecan, vincristine, Doxorubicine.

This has been on trial in Italy with relapsed Neuroblastoma, with quite successful results in giving some time for these children. Our hospital  need consent to use this, as it never been used in Leicester, it may mean  going to Manchester, or Great Ormand Street.

Before starting this, we will need bone marrow results, a new Hickman line or portacath, hoping Jesson can have a portacath , he would still be able to swim and bathe, as it's sealed under the skin, we would like to keep his life as normal as possible, I guess it will be difficult, but for many of you that know Jesson, he has fighting spirit to say the least!!!!!

After the TVD we hope Jesson will be eligible for the MIBG therapy, I will try to find a link for this as it's difficult to explain the treatment. It consists of extremely high dose radiation administered to the patient, and they have to be in isolation, as they are so radioactive for 7 days. I would only be allowed for 10 minutes a day in the room!!!!!

I will updates when I have more news.

MIBG RESULTS

Unfortunately I am the bearer of bad news, Jesson has relapsed.

The MIBG is showing the cancer is back, in his skull, spine, legs, shoulder, pelvis.

This is not what were expecting last week he was running around and completed 3 full days at school.

This means we have limited time with our wonderful son, we do not have a plan yet, but hope to have something in place very soon, hopefully to take away Jesson's pain .

He is so special in every aspect, he is so upbeat and, trying to make us laugh the whole time.

We are back to the hospital in the morning to get Jesson's bone marrow and trephine test, under general anaesthetic. It will be a couple of weeks before we get any results from this test.

Our consultant is contacting the Neuroblastoma specialist in London, this will hopefully enlighten us a little hopefully, with some options on what's next as far as treatment.

we know that treatment is limited as Jesson has already received very aggressive treatment.

We will have to see where we go now.

Any ideas out there do not hesitate, please contact us

Thanks everyone

Helen

Monday 28th march

Hello readers,

Just a very quick update to let you know, Jesson is due to get his MIBG test on Wednesday, it was cancelled last time due to Chicken pox. Since then Jesson has made a good recovery, and Kesia is just over the worst and she is itching her spoties, as she calls them.

We have been out and about, and trying to get as much fresh air as possible. It has been a lovely few days, Jesson wants to play constantly, which is also wonderful.

I feel very anxious about Wednesday, purely because this terrible disease could raise its ugly head at any time. But on a very positive note Jesson is well and happy so lets just hope it will be a clear scan. He has complained occasionally that his leg hurts usually his right leg, whether radiation can cause any aches and pains, I don't know but its isn't stopping him from playing. We have also been very active, so maybe achy legs rather than pain, its so hard to explain when you are five!

But then again anyone who knows Jesson will be well aware of his very animated demonstrative manner!!! especially when its comes down to anything that involves him.

I will post as soon as I have any news.

Thursday 10th march

Brief update

The scans will not go ahead Jesson has Chicken Pox !!!

Jesson will be in isolation for five days and he will be on IV Acyclovir (something like that) an anti viral medicine to hopefully stop any major complications.

Yesterday he was very well, he was jumping from one bed to the other shouting Jonnie Woods????I have no idea??

today he is a bit quiet, we hope he will fight it off, and lose the spots quickly.

Update

Jesson seems to be a lot better, the headaches have gone, and hopefully for good!

He has been lively and his appetite seems to be better.

Jesson has an MIBG scan on Thursday and Friday. He has to lay still for an hour so we are looking for a good DVD  to entertain him! as he is usually the entertainment. An MIBG scan is a bone scan with  Radioisotope dye, the dye sticks to the Neuroblastoma and will show on the scan. Hopefully nothing will light up.

Lots of special thoughts for Jesson please.

The messages in the guest book have really slowed down, anyone who reads, please say Hi to Jesson

Friday 25th February

Yesterday we were in hospital all day, Jesson has had really bad pains in his head.

We have been very concerned, the pains seem very similar to the pains at diagnosis.

We had the CT results,  the chest and abdomen are clear, which is very good but there are so many piece's to the Neuroblastoma puzzle. 

We are now awaiting bone marrow aspirations, under general anaesthetic to rule out relapse in the bone marrow, and then Jesson is due for a MIBG which  show any tumours in the bone.

We have had normal blood results, apart from the CRP being slightly elevated, this can be an indication of infection. We only hope this is viral infection or side affects from the Retinoic acid, this was suggested by the consultant. 

Apart from all of this Mum came out of hospital yesterday, after suffering a very bad chest infection, and was taken in on Sunday by the paramedics, she is doing well now thank goodness. What's the saying "It never rains but it pours" 

well there we go in a nutshell, I will update any news, as soon as possible.

Please give Jesson a thought next week, as I think the test should be soon.

Helen x

New pics Here

Thursday 5th February

This is just a quick update to let everyone know, that Jesson is up and around  he is moving well and almost running!!! beware.

We had a great day out on Wednesday we were invited by Wishes 4 Kids to celebrate the Chinese New Year, it was really wonderful, Jesson loved it, the drums, dragon and displays, we went around Leicester City centre, finishing off at the Peking Restaurant, for a lovely lunch. The festivities carried on inside with a Chinese juggler, who was superb! we were holding our breath as he was juggling with huge terracotta vases spinning them on his head and catching them on the back of his neck, he was fab!!!

We are off to Center Parcs in the morning, we hope for dry weather, and good luck, because holiday's seem to be a little against recently (nut allergy, broken femur) as if you need reminding.

Please think of us next Tuesday Jesson is having a CT scan on his abdomen,  over next few weeks he will have numerous tests to see where we are with Jesson's treatment.

He has finished the last round of Retinoic Acid, thank goodness we say, in one breath but we are scared senseless of future with no treatment, but I guess these are feelings of most cancer parents. If there was any progression it would mean that Jesson would have to have chemotherapy again.

Well bye for now I will update after our short break.

Wednesday 26th January

Hello readers, it's been a few weeks since our last update.

Jesson is well and moving around, he is regaining his volume, and movement!

We had an appointment every day last week for Jesson at the hospital, there has been quite a concern about Jesson's hearing, we had a hearing test that proves that his hearing is equivalent to a 70 year old!

Unfortunately there isn't alot that can be done, as it is the higher pitched sounds that have been lost. Hearing aids will be of no real benefit as the lower tones have not deteriorated too much. So they will retest in 6 months and see if there is any change.

Jesson's leg seems to be  healing, last week we had a huge concern because the good leg (the one that previously had the remaining tumour) was really hurting. I was really scared and concerned that we were looking at relapse, we rang the hospital and they suggested we go in to see a physiotherapist, to see his movement. At this point he was resisting any weight bearing movement, and crying when he stood up. The following day we went in to the hospital, by this time he was walking around and riding the bike!!!!! thank goodness, we hope it was the strain of the broken leg. He has not mentioned it since, so we hope it was strain.

We hope that Jesson will start back at school soon, and regain some routine in our life's.

Jesson has started the last round of Retonoic Acid (Accutane) today, at the end of this round of treatment it will be the end of this protocol. By the weekend we will see a dramatic change in Jesson's skin and personality, his  skin will dry out, and his moods will be up and down.

We think that at the end of the protocol they will retest, and see where we are. Scary!

I will update soon as we have any news.

Bye for now H

January 5th 2005

The first update of the New Year.

We are so happy to be in 2005 with JJ smiling, reflecting back to this time last year, we really didn't know how things were going to go, we had to face the year thinking of major surgery and Transplant, it was scary... and still is! But Jesson remains a positive, loud, jolly, caring, loving, 5 year old, and we love him dearly.

Jesson has amazingly had his cast off today; I was amazed as we were told it would take between 6&8 weeks!!! Jesson is already making an attempt to move the leg and stand. The consultant said he will walk with a bad limp, and still probably limp in 6 months! but as long as he is happy we are fine!

I have added some pictures of the children with the new puppy Tilly, we hope this will encourage Jesson to move around soon, he had just started to crawl with the cast and now it's gone, he has to adapt a new technique to move around.

The puppy is a Lhasa Apso, any top tips for puppy training please feel free to e mail me.

Bye for now.

Pictures here