xxxxxx Merry Christmas Everyone xxxxxx

 We would like to wish everyone a merry Christmas and and a Happy, Healthy, Peaceful, New Year.

 

We haven't had a particularly good week, one Child passed away in CICU this week, this was due to post transplant complications. Little Charlotte was fighting Neuroblastoma. Our thoughts are with this family. xxxxx

Last Monday Jesson started with several areas of pain in his skull, almost like bruises, very specific areas. Jesson was unable to lay on these areas, and fast movement also  caused discomfort. We are waiting for urine results to decide what to do next. Unfortunately the option are limited.

Vaccine Therapy will not be carried before MIBG therapy. MIBG therapy can be really harsh on the platelets, as you all know Jesson has major problems with making platelets.

So what next remains to be seen.

 

On a brighter note THANKS to Georgies Fund, we have received a huge box of presents.

Thanks to Tania and the gang

xxxxxxx

Jesson and Kesia are so excited about Santa coming, we have the advent calender each day, and Kesia know how many days left the minute she wakes up.

 

Jesson had a wonderful term at school, he has achieved 75% attendance made lots of friends, and the children are so lovely to him, he is so popular.

---

I do understand people care and read frequently, but we are still no wiser on the vaccine.

 

The Royal Marsden are now saying it is going to be difficult to do the leukapheresis process,

This has  only been carried on 3 patients and because Jesson is only 7 they need a lot of blood, so logistically the process is proving more difficult than we previously thought. So we will have to see what happens over the coming days.

 

Jesson is now attending 50+ of school he is enjoying joining in with his big main stream class. He has made lots of friends and joins in with all the fun, Yesterday he came home for lunch and shouted and sang for the whole hour, guess he has to be quiet in class.

 

THE NEWS SO FAR ON THE VACCINE THERAPY

It sounds promising  as far as the vaccine, the RNA was extracted from Jesson's tiny pieces of tumour. Apparently the tumour slices were tiny, but they managed to select the cells they needed.

The next part of the process is called Leukapheresis. Jesson would be linked to a machine, they have to take Jesson's blood, select cells, and replace his blood. This could prove difficult as Jesson is small, so more waiting to see who they will get around this problem.

 

He seems happy and well, and so so excited for Christmas, he has a calendar that he has made, to count down for the Advent opening.

 

---

A quick update, Jessson has still been coughing a little, and the cold is clearing.

We are waiting for news on the Vaccine, Jesson's tissue form  the tumour that was removed 2 1/2 years ago, is in a lab being worked on!  

As far I can understand, this piece  tissue is very small it needs to be  a certain weight for them to even begin work on. If they have enough to work on the the next process it to extract out something called RNA ???? this is used to make the vaccine. This can also prove difficult, so we still are not sure if Jesson will able to go ahead with the treatment.

We will find out Tuesday afternoon whether they have managed to remove enough RNA. So until then we carry on with our normal life.

P.S  We found snails and and returned to place where they were found, back in our garden!!!!! set them free, go snail goooooo.......

Friday 17th November

Hello everyone,

Jesson has just gone off to school along with Kesia, both of them happily walking together chatting  about the awful wet weather.

Jesson has been coughing last night, so he will only do a short  morning at school, as we will visit our GP.

Apart from the cough he seems well.

We are hoping that we will able to pursue the Vaccine therapy very soon. This is a new treatment that is unproven,  with no other real options for Jesson we feel we have to carry on trying what we can.

I can not give any details,  as my knowledge on this therapy is very little.

As far as we know we have to sign to release the tiny piece of tumour that was taken from Jesson 2 1/2 years ago, with this very small piece of tissue we hope  they can make a vaccine. We know he also has to have another procedure carried out, where all the blood is taken from his body and replaced, this procedure is called leukapheresis, they will remove cells from Jesson's blood to enable them to produce a vaccine.

As I mentioned the treatment isn't curative, and may not even be able to make the vaccine. So I'm not too excited!!!!!

Well everything else is going smoothly TODAY, I will dash now

Bye xx

 

MIBG  RESULTS

We have finally received the MIBG scan results, this scan is to determine the disease status.

Once again we were hoping for reduction in the disease, once again we have had all the same feelings of disappointment, and also the old emotions all pulled out of the little holes we managed to bury them for a little while.

 

As all parents in our situation you know how these scans can be !!!   "They are all shades of grey and is it worse we don't know", ahhhh this frustrates me so much when our consultant explains this, but  deep down understand what they are saying,  I guess we are devoted Mothers, wanting clear cut results and answers.

 

So we were told the skull looks subtly more enhanced (a bit worse)

Uptake in the tops of the legs

A spot in the pelvis

A vertebrae and rib (never heard of these places mentioned before on the last scan)

Our Consultant said he's stable.

Well I'm not so sure, new areas, more in the skull.

This is another stark realisation of the whole situation, and I'm feeling scared again.

 

The last few month have been so good, Jesson has been so well and energetic, fun happy, so I guess I will have to try and focus on my wonderful little man, try to forget what we are being told and get on with our (at the moment) normal life. xxxx

 

17th October 2006

Jesson is really enjoying part time school. We have an MIBG scan on Thursday and Friday this week, once again pre scan nerves are building up!!

My Dad is in hospital again he's had 2 little strokes and a bigger one, it seems to be constant worry in this household! We are hoping he will be home very soon. He is managing to walk again and is still slurring a little, he is such a fighter trying to overcome the effects of the strokes. I will let you know as soon as we know more on the scan results.

 

JESSON'S 7TH BIRTHDAY

SATURDAY oct 7th

 

another year another miracle

happy birthday

to our special little boy

JESSON

XXX

 

Jesson has grown up so much over the past 12 months, he makes us all so proud with his bravery and strength, and funny happy personality.

we never thought we would be celebrating this day.

in the last year JESSON has

learnt to read

become a very polite young man

run faster

jump higher

laugh louder

love more

share

lose 3 teeth

go back to school

bid on ebay for  lego!!!! ahh

and much much more ........

 

we have been blessed with a very special son.

 

Jesson started round 3 of temozolamide last Monday, Jesson has  only being sick once. He has felt quite grim I would say a little tired and unhappy. Jesson is full of cold again, just hope it doesn't develop into another chest infection.

 

We are still enjoying School, and Jesson  is very happy We would like to mention a little girl Abbie Shaw who passed away from this dreaded disease, last week.

Our thoughts are  constantly with the family xx www.abbieshaw.me.uk/

Friday 08 September

Seems a while since the last update.

Jesson STILL has NOT started Temozolamide 3!!!!!! his platelets dropped this week. Jesson has to have 100 or more, they have gone down to 68!!!! we lost 10 in a week, this could be due to Jesson having a chest and ear infection last week. 

 Platelets dropping can also be an indication of the bone marrow being over taken by cancer, but as he seems quite well other wise,  we will retest next week, this isn't making it any easier thinking that" it could be the infection".

As  many of my friends know I read many other websites of other children with NB.

It makes me realise how quickly things can go wrong VERY quickly, scary. I have read about a little girl called Christi Thomas, almost everyday for the last 2 years. Christi's mum writes wonderful updates, but at the moment Christi is struggling terribly with this wicked disease Neuroblastoma.

 Only a few weeks ago she was having a wonderful time, with her family, things have changed so dramatically, please have a look and sign the guest book, her Mum and Dad's hearts are breaking. www.christithomas.blogspot.com/ 

This week we have been to a wonderful wedding, thanks to our invitation from Sadia, who we have met at the hospital. Her little one also has NB.

Jesson went into School for the first time in 18 months!!!! we are trying to get him in part time, he has really enjoyed it!!

Jesson latest thing is his snail pet, this is a real snail in a very snail friendly environment, it moves from the conservatory to the living room table mmmmm not sure eh, his name is big, the little one is missing, not sure where somewhere in the house I guess, suppose we'll find him soon.

 

Tuesday 21st August

Hi,

Thought I better let you know we have had a great weekend, we have been to Lego land in Windsor.

The children were so excited about the trip, we stayed in the Holiday Inn, which was only 6 miles away from Lego land.

 

Jesson was amazed by the trip, he is really into Lego at the moment, and our house currently looks more like Lego land Leicester!!!! as you can imagine we indulged a little on the retail aspect, everyone who has donated to Jesson's, "new wallet fund" was spent at legoland, and not forgetting Kesia, she is  also a little obsessed by spending every penny she owns.

 We opened a bank account for the children the other day, in hope they may understand the concept of saving, not sure we got the correct message across, Kesia questioned the bank manager,  "when do I get the new car",

We had told them, they need to save for when they "grow up" and they may want a car, or go to University.

I think kes was expecting the Porsche to be on the forecourt of the bank soon as the account was opened!!!!

Must mention one of Kesia's other quotes this week, Jesson and Kesia were having a little brother and sister disagreement... he upset her and he twisted the truth a little, she  came running to tell me, and said  "he was a lion, and just lioning" she meant Fibbing, (lying). How cute eh.

On the medical front Jesson has had no chemo for 63 days, and his blood count is still not recovered enough for round 3, his platelets are still only 66, they have to be 100 +. When it will begin, I really don't know !!!

We have had a very sad situation this week, our neighbour Phil passed away.

We are very upset, and feel we would like to mention him as he read Jesson's web page regularly. love and thoughts to his Wife Julie and family xxxx

-----

Hello,

Jesson's blood count is really struggling, his neutrophil count is 0.05 white cell count is 1. really low!!!, this isn't what oral chemo is supposed to be like.

 He is receiving regular blood and platelets. He is almost 3 weeks late on Temozolamide!!!!

Wednesday night he had a pretty bad reaction his eye were so swollen he could barely see.

 

Something has to be done!!!!!! so I have had a good moan.

Since my moan and groan, this is the plan.

 

We have started on GCFS bone marrow stimulant, I give Jesson the shot in his leg, every night, this should hopefully stop him from being neutropaenic, and raise his count for round 3 of his chemo.

 

Our consultant has being researching Temozolamide, and apparently if its used post transplant, (like JJ) it is very harsh on the count.

 

So the plan is to reduce the dose and slowly build it up.

Hopefully he will be able to receive his chem every 28 days  with no blood products, and no neutropaenia.

This is the photo of Jesson after the bad reaction.

 

Friday 21st July

I was reminded today by our nurse Angela, I have not updated for ages!!!!!

 

So here we go, nothing runs smoothly. Just over a week ago my Dad had a heart attack and was blue lighted into LRI, he was in resuscitation for an hour or so, and was then moved onto the level above Jesson, quite lucky as we were in for platelets!!!

Dad seemed to get better as the day went on, he had a lot of pain, and was really scary for us. He was in for 6 days, so with Dad and Jesson's we have been at the hospital every day.

Fortunately I can needle and access Jesson's port,  which has been very useful over the past few weeks.

The  Temozolamide seems to be really playing havoc with Jesson's blood count, it seems to drop slowly and really struggle to come up. Jesson was due chemo yesterday and he is having a blood transfusion tomorrow, so it looks likely there is going to be a considerable delay.

I have been very concerned about the big delay with Jesson's chemo, and we were told it would, and shouldn't affect his count too much, but once again things are not as we thought, but at least Jesson has remained well, and very happy.

If anyone has any experience with temozolamide please do not hesitate to contact me as I would be interested how others have tolerated this drug.

We had a great day out yesterday with Wishes 4 Kids, Jesson was racing in sports cars around  a Race Track   ahhhhhh!!!!!! I was so scared!!!!! they loved it, screaming "Faster Faster"

I will try to add more new photos soon.

04 July 2006

Jesson came out of hospital Friday lunch time, he seemed to be OK on Friday and Saturday he seemed different, quiet but no real reason for this.

 He has complained of leg pain a couple of times. Obviously this has once again worried us.

 Thinking back Jesson had quite a  lot of physio on Friday morning before leaving the hospital, this was for Jesson's nerve damage due to the chemo. As many  Cancer parents know Vincristine can cause tip toeing and sure enough Jesson is right up with so much stiffness in his feet, he is becoming unbalanced due to the problem.

We had Jesson's urine tested today to see any changes, we will have to wait about a week.

 

As far as the visit to The Royal Marsden, we are not overwhelmed by the positive info that we have received about MIBG therapy. We spoke at length with 2 consultants who were not very positive on the treatment, they explained all the problems it could cause. To flatten Jesson's bone marrow again, could be very detrimental to Jesson especially as we are really looking to get some good quality time for Jesson.

 Maybe in the future things may change but at present Jesson has enough going on. We are still going try for the stem cell harvest, as we may in future need a stem cell rescue.

I would like to say a huge thank you to a special friend Tania for your support at the Marsden xxx

 

I am off to the Marsden to discuss MIBG therapy.

Jesson is in hospital with Tonsillitis and an ear infection. He has felt grim, spiking Temps yesterday, coughing,  and sneezing!!!

Saturday 24th June

Hello All,

We have been away for a week in the Malcolm Sargent Clic House at Prestwick, Scotland. WHAT A GREAT PLACE, thanks to all the staff, and everyone that made it possible.

This is a house that has been set up for families like us, to enjoy some quality time with your family.

We have received Jesson's blood results and we begin round 2 of Temozolamide FINALLY!!!!!!!!  we have waited weeks for Jesson bloods to get high enough. It is 5 weeks over due.

 

We have a meeting at The Royal Marsden on Wednesday, this is to discuss MIBG Therapy, this is a trial that is being carried out with extremely high doses of radioactivity. Jesson would need a stem cell rescue, so it won't happen very soon !

 

Hello to all the families we met, and a big hug and hello to Jessica (Kesia'a Friend) she missing you already xxxx

4th July 2006

Hello all,

Thought I better give everyone an update, Tuesday this week Jesson began complaining of neck and head pain, I was trying to keep my head together and trying not to over  panic, but if you may remember this was the first symptoms of Jesson's Neuroblastoma, we rang the hospital and sure enough off we went!!!  we were let out quite soon after the docs checking him over.

 Jesson's throat has also been very sore. Jesson received more platelets on Wednesday, his HB has also been dropping, I can not describe the feelings and the worries this situation has caused.

 

Thursday morning Jesson felt really poorly so went returnd to the LRI, this time his temp was on the way up and we knew we were about to be admitted.We immediately began first line IV antibiotics.

 Friday Jesson's ear and throat was hurting and the Doctors discovered he had Tonsillitis and a little ear infection, he was looking extremely pale but pretty happy. From his blood test on Friday we discovered he was in need of Blood and platelets, I am constantly questioning whether this is the disease returning, our Consultant says is appears to be post viral from the meningitis, but obviously can not rule out disease.

Today we have received Jesson's blood count prior to the transfusion and it had gone up a little

Friday HB 7.9   Sat HB 8.6

Friday platelets 20 Sat platelets 23

I never knew how happy I would be over 3 platelets!!!!!!!!!!!!!!!!!!!!!

We now have to monitor Jesson and carry out another blood test on wednesday, as we still are waiting for round 2 on Temozolamide

 

Saturday 27th May

Things seem a little better, we have been a little worn recently, as you have  may have guessed.

Jesson seems pretty good, very pale, platelets still dropping. Hepatitis A B &C clear waiting more virology test to come back.

 

Jesson's Trephine is clear, which is great, but there is obviously pocketed disease in the legs, pelvis and skull,  these areas are still showing postive on the MIBG.

We are waiting for an appointment at the Royal Marsden London, to talk about MIBG therapy, this treatment may be a possibility, now the marrow is clear.

 

We are now praying Jesson's platelets are going to recover pretty soon as we can not carry on with chemo until Jesson's platelets are 100+.

Jesson's LFT (liver function) was 1295 on Tuesday, today it was 490 this should be around 50!!!!! so who knows when this will go back, to our strange kinda normal!

Tuesday 23rd May

Where do we begin...

I was waiting for the last part of the bone marrow test before updating unfortunately we still do not have it.

Over the last few weeks Jesson has been suffering from really bad tummy cramps, we had no reason for this. I was up all last night rubbing his tummy and holding his hand whilst thrashing around the bed.

Last Tuesday Jesson's platelet count crashed and remained the same since, he had a transfusion last Tuesday and yesterday, I have been so worried thinking this is the beginning of the end disease progression etc......... !!!!!!!!!!!!!!!!!!!!!!!

We did a urine and the disease seems under control........!!!!!!!!!!!!!!!

We went in yesterday for platelets and his blood count is showing some abnormality in his liver function pointing at Hepatitis, which can give you tummy ache.

This could be devastating for Jesson as we need to carry on with the chemo, we need to know more about what's going on once again, we have to wait for the blood test to be carried out..........!!!!!!!!

Scream shout, I am so gutted he has something else to deal with.

Please excuse the negative update I'm not too happy at the moment. x

Thursday 11th May

Hi everyone, we are at home Jesson seems to be getting stronger and louder no nausea for 2 days, and no head pain YEAH !!!!!!

Jesson had viral meningitis, this was showed on the results of the Lumbar puncture,

Jesson also had his bone marrow and trephine test, at the same time.

We are anxiously waiting for the Bone Marrow report, we hope so much that this is clear, we would then try for a stem cell harvest, and there would be a possibility of MIBG therapy, I will tell you more depending on the marrow report.

Thanks for all the messages in the guest book, text messages, phone calls and visits.

 xxxxx

We are back to NG feeding Jesson again in hope we can build him up BIG and STRONG.

Saturday 6th May

The results from the lumbar puncture is showing Jesson has viral meningitis, with this kind of meningitis you can only treat the symptoms as it is a virus.

Jesson is still being sick and suffering from head pain, we only hope these horrible symptoms soon subside.

Wednesday 4th May

The Doctors are still thinking Jesson has Meningitis, he is still vomiting with horrible head pain, Jesson is very sore in his head  neck, and spine. It will be several days before we get conformation.

Tuesday 2nd May

Jesson's scan results are not what we were hoping for, they are the same as last time, we were hoping for improvement but unfortunately this was not so.

The Temozolamide is hopefully for disease control, so we are now hoping for a miracle.

 

Jesson is is hospital with suspected Meningitis, Jesson was complaining of head neck and back pain Monday Tea time and is now vomiting, so we are waiting for a Lumbar puncture.

We hope it isn't but they are wasting no time he has started IV antibiotics.

----

Just a quick note to say that this very easy chemo Temazolamide, is not so easy Jesson has vomited over 10 times. We  hope this isn't how it's going to be!!!!!

We are still waiting for the MIBG results.

Sunday 23rd April

Just to let everyone know that Jesson  had his scan, my very unprofessional eye could see glowing areas in the skull and legs!!!!!!!!!!!!!!!!!!!!!!!!

We have to wait to see what is written in the report, please pray for stable and NOT progressive disease.

Jesson seems great very active, but I  know the harsh reality of this cruel disease.

We have been to the Neuroblastoma Society AGM, I would like to say thanks to the great support from parents that I met.

HAPPY BIRTHDAY NANNIE XXXXXX  LOVE JESSON & KESIA XXXXX

 

Tuesday 18th April

Hi There, this is a quick note to let you know, Jesson and Kesia have been in fine spirits. Lots of sleepovers with Charlie, and lots of playing.

Jesson is having his MIBG scan Thurs and Fri this week,  this will consist of a cannula being placed in Jesson hand,  some nuclear medicine will be given that stick's to the Neuroblastoma. Afterwards Jesson has to lay very still for a series of 8 pictures, that run over an hour, and the same procedure on day 2, without the injection.

 What we are hoping for is to see no black glowing spots of cancer.

--

The final decision has been made, which wasn't made without lots of questions  trying to ease our fears in regards to the next lot of treatment for Jesson.

We are going with Temozolamide, this is an oral chemo that we can administer at home. Jesson should have little or no hospital in-stay, his hair will (should) grow back. And the only side effects is a little sickness.

 It certainly sounds an easier option for Jesson, as TVD was  an incredibly tough chemo regime, (so says the Prof that I spoke to).

 Fortunately Jesson made it through 9 rounds, and he is certainly due a break so we can help him really enjoy some exciting 6 year olds stuff!!!!!!

Our fear is how long Temozolamide will hold the neuroblastoma from growing back, and if it will. But for now we are enjoying our time and trying not to think about all the "what if's" .

Jesson will also be undergoing an MIBG scan,  to see where we are since the completion of the 9th round of TVD. It will be used as a baseline scan for beginning the new treatment. We are hoping for great results.

 

Friday 31st March

I have a some extremely sad news to share today, one of Jesson's very special friends passed away yesterday. Daniel Cutting was a young quiet boy who was very friendly with Jesson.

 We would like to express our sincere sympathy to, Ray,  Sally, and Georgie, Daniel's little sister. We are heart broken, that Daniel is no longer with us.

 

Jesson is sharing his evening his with his friend Charlie, don't know what time we will go to bed!!!!!

 

As far as Jesson's treatment we are in a dilemma, as Jesson was so ill with the last round of chemo.

Jesson only has one more round of TVD to complete 10 rounds of this  tough  chemo, our consultant is reluctant to give another full strength TVD, we share the same feelings as Jesson has been so ill with pneumonia over the past few weeks.

 

 The options are (at the moment) 80% dose of TVD, or  60% dose of TVD, or abandon the last round and go onto some maintenance chemo Temozolamide, which is showing evidence to  stop progression of neuroblastoma. We are not sure what to do next, and we are waiting to find out more information on these options.

 

 Any NB  readers please contact me if you have any helpful ideas.

Thursday 23rd March

Thanks once again for all the kind e mails and text messages, I haven't answered most of them as we have been so busy.

We are home YEAH!!!! with a saturation monitor and oxygen, Jesson still needed oxygen last night, so we are still monitoring his saturation levels.

He is eating well and demanding so normality is being regained quickly, I really feel for Kesia at the moment as Jesson's needs are constant at present, but anyone who know Kes her disposition is so sweet, she takes it all in her stride and wants to be so helpful. I try to join her in with Jesson care just so she isn't left out, she loves to feel she's helping.

Lets hope the weekend goes smooth and Jesson is able to remain at home. xx

Tuesday 21st March

Thank you for all the very kind messages and e mails that we have received over the past couple of weeks, it means so much to know everyone is rooting for Our Special Little Man!!

We are hoping today that Jesson has turned the corner, his saturation levels are still on the low side, meaning he has to be in and out of oxygen, but our consultant said his chest sounds a lot better.

 

And guess what, the volume is up YEAH!!!!!!!! he been demanding, shouting, whooping and singing with Kesia today. I have constantly heard Jesson shouting Daniel his friend, they have been playing all day.

We won't be home until he can go without oxygen over night, so I can not guess how long that will be.

 

A HUGE HUGE thanks to everyone at Montrose School for the money raised for Andrea to take part in the London Marathon a grand total 1900.03 has been raised, this will all go to the Neuroblastoma society.

 

Sunday 19th March

Jesson is still in hospital, we were told it could be at least another week before Jesson will  be any better. He is still on oxygen, and so weak.

I thought I would post a another picture to help us remember our lovely holiday, this is Jesson kissing Latoya the dolphin.

Thanks for all the new messages x

--------

Jesson is still in hospital, it's been a really tough week. Jesson has been so poorly, with this nasty chest infection. He is still on oxygen in the night, and is off a times in the day. He is so weak and his weight has dropped so low, it's shocking to see his little skeleton showing, his face is so thin.

 Today he has shown some interest in food, and only hope that we see some improvement over the weekend. He is certainly brighter but i guess this is going to take a long time!

Jesson's blood count is coming back up with the help of GCFS, so we hope his chest clears very soon.

 

Monday 13th March

Just a quick update, Jesson is really unwell in hospital.

He has a very nasty chest infection, he has been on oxygen since Friday. His xrays seem to be getting worse and he is having six hours a day of antibiotics.

As well as the chest we also think he has a line infection. Jesson has hardly spoke and sleepy most of the time.

His blood count is very low, we are giving him GCFS shots to try to raise his white cell count.

We are hoping tomorrow will be a better day, I am not sure what is next, I guess time will be our only answer.

Our holiday seems such a distant memory, especially whilst sitting beside Jesson in  hospital.

 

Wednesday 1st March

Hi everyone, we are home. We have had a magical holiday,

Both Jesson and Kesia had a wonderful time, the weather was lovely apart from 3 days of a cold front, we were frozen with the wrong season's wardrobe!!

Jesson was well most of the time apart from 48 hour temperature, so no hospitals, no doctors, we felt pretty normal hoorayyyyy.

Jesson has improved so much with his swimming and loves the water so much, it's a pleasure to watch him enjoy it so much.

We managed to fill ours days with numerous parks, MGM, Magic Kingdom, Universal Studios, Island of Adventures, And the very special day at Discovery Cove.

The swim with the Dolphins at discovery cove was so beautiful, and what a terrific place.

We haven't seen anything like it. The dolphins were incredibly trained, and just so gentle, Jesson enjoyed the whole experience so much.

I will be adding lots of new photos.

Since our return Jesson has began round 9 of TVD, he had a good blood count pre chemo, still only 85 platelets, shouldn't moan they have been alot worse eh!

He's had a really wheezy chest. He's had nebs and inhalers trying to stop the wheeze. We hope it goes away soon. JJ is on day 2 of topotecan, and we will be in hospital all weekend. Back to the old routine.

I would like to thank everyone involved who made our with our very special holiday possible, the special memories will be with us forever.....

 

Thursday 2nd February

Hello readers, I have been really busy over the last few days.

Jesson keeps asking how many sleeps until our vacation, who watches too much TV eh !!!!!

I think we are going to be more like a walking pharmacy, we have so many drugs to cover every eventuality, we hope we need none of them. Please keeps your fingers crossed that we have no medical problems, as we have had pretty bad luck on previous trips.

 

As far as Jesson's medical news, Jesson's urine levels have come back, they are lower, much to our relief, the HVA is still a little up but lower than before.

Jesson's blood count is recovering, hopefully by the time we travel they will be even better.

 We met with Jesson's consultant yesterday to discuss the planned trip, and possible future treatments for Jesson. We have to wait to see what the next lot of scans show, they will be after another 2 TVD's so we aren't thinking about anything as yet, only holiday!

 

Please send Jesson lot's of messages before we go xxx

Sunday 22nd January

Jesson has had his 8th round of TVD, it went quite smoothly.

There was one problem we were isolated due to this C -Diff  tummy bug!! he seems OK, and he is on antibiotics.  We can not leave the room, which for Jesson when he's well is a nightmare.

As  previously explained he has had poo problems for a long while, and seems to be taking forever to clear up.

Jesson's HVA (neuroblastoma marker)  is up a little, I will ask them repeat the test. Can only hope it's down this time.

Jesson's mouth is very sore at the moment, we are doing lot's of mouth care.

He had blood and platelets on Friday, we are now sitting back to see what happens.

 

 This is the time Jesson usually get's an infection, he is on GCFS shots but his count is rock bottom, it will start to recover at the end of next week (hopefully)

 

We have had another HUGE worry this week, holiday insurance I can not imagine what my phone bill is going to be, I have rang around so many insurance companies and we have been refused by everyone.

To cut a long story very short our original insurers came back to us, after a lot of persistence, they eventually sent out the certificate so Jesson can travel.

Obviously we wouldn't travel with out the consent of our Docs, but we certainly need good insurance with our little man. Thanks to a very sweet girl at AXA PPP called Helen , she really helped us.

 

 

We would like to say a huge thank you to Tania and all the gang from Georgies fund.

They have made our Christmas and New Year very special!!!!!

Please take a look at Georgies  web site,

www.georgies-fund.com

 this is a website set up in memory of a sweet little boy who lost his very brave battle 2 years ago this month.

 

 

Sunday 8th January

We have been at home for just over a week now, Jesson seems good apart from a few issues, WHY are there always issues!!!!! Well here we go, he is suffering little things that are so normal for the average family. Nothing is normal in a cancer household.

 Jesson has been wheezing and coughing, I guess JJ caught this viral cough from Kesia, as she has had a pretty bad hacking cough, so that's the first worry, secondly I then started coughing and wheezing, I'm fine but to protect Jesson good old Mum (oops not old) my wonderful Mum decided to have JJ over night, talk about the bum end of the deal, he sleeps in her bed, he pooed everywhere!!! we think its a tummy bug, he's getting lots of tummy ache, he is still wheezing and coughing at this time. As a few days had passed and I am still struggling to sleep with my coughing, we packed JJ off again to Mum and Dad's he was delighted running around cheering so loud with excitement you wouldn't believe, but I have just received a phone call guess what,  he has been sick all in my Mum's bed, can you believe it!!! second time and my poor parents mopping up sick this time! I actually feel better for the Good night's sleep, but I guess they are going to be so cautious next time eh.

I took a poo sample into the hospital so i guess we will see if he needs antibiotics, Jesson is due to begin his chemo on Monday, I will guess the doctors will have to make the decision whether we begin round 8 of TVD..

So the picture at the moment is,

Still positive bone marrow,

Tumours in the tops of his femurs, and hip, and a subtle enhancement in the skull.

Bloods are HB 10.2

              WCC 5.2

               N   2.55

                P  74

This is a good blood count for Jesson!

 

We are planning to go to Florida hopefully February,  so we need everything to run on time, and no major hiccups before then. We need him to keep well, and lots of luck.

Please keep the orders coming in for the paintings (DO NOT BE SHY) they are gorgeous!!!!

Merry Christmas and a very Happy Healthy New Year To everyone xxxxxx