10 November 2007

This is incredibly difficult for me to sit here and go over the last month. Our hearts are breaking, life with out Jesson is awful.

He was such a big character,  we have a huge void.

we so loved every moment, of his existence.

 

Going back to Oct 5th

 

Going back to the day when Jesson had the seizure, he suffered so much pain that day. He didn't get out of bed (my bed, as he slept with me for 4 yrs) I gave him lots of oramorph, and the awful pain  just didn't leave him.

 Late afternoon he decided to come down stairs, and was happily chatting as he said "The pain was calming a little".

He shouted me, as always I ran to his every beckoned call. He couldn't speak he was trying to, but just couldn't get his words out, at this point  I knew what was happening,  I guessed a seizure.

I spoke very calmly reassuring him he would be ok, at this point he was pointing at the ceiling and smiling, I really thought he was talking to his spirit friend Ryan, I thought we were losing him. I told him to lay down and close his eyes, but he began to  jolt for several minutes and slumped forward, in the mean time I rang ward 27 and they said to ring an ambulance. By the time the ambulance arrived Mary was with me, and Jesson was starting to talk, he was getting very annoyed because he as waiting to play with Mia.

 

The guys in the ambulance were great, and we went straight to ward 27. Dr Visser was there, Jesson had a cannula (his last one in his life) The docs sent Jesson for a CT scan of his brain. It was very uncomfortable because Jesson had so much pain.

 

We sat and waited staring at Jesson sleeping, I was crying knowing the news was going to be bad. Jesson's pain was so out of control it took 2 nurses  myself and Ashleigh to turn him over, it was so awful seeing our precious son in so much pain.

 

At 11.30pm  Dr V arrived, we knew the new was bad, we were taken to "The room" this is the room when it's bad news!! we sat down in a daze. He went on to say the scan results were bad news, Jesson's tumour had spread in hiis brain, only 10 days before we were told  in the  UCLH the brain was clear. 

 I ask how long we had with Jesson, Dr V said approximately 2 weeks.

I need not say any more the devastation was immense, there was nothing more that could be done. We decided homeward bound, no more treatment. Jesson had suffered so much over his 4 year battle and still the awful disease was taking his quality of life.

 

The next three weeks and 2 days were taken up by wonderful community nurses visiting,  making sure Jesson's pain was under control. And of course lots of fun ( remember we are talking about Jesson) Jesson's 8th birthday was fab everyone close to Jesson arrived, thanks to lollipop for arriving and entertaining the children as wonderfully as ever, and a few adults as some of the photos prove!!!

 

On the Monday was the Limo, which you all know about. Jesson's first week at home was a sleepy week, we think because of him getting used to the high dose morphine.

 

The second week we decided not to waste this very special time, we started to visit Stonehurst farm (thanks guys for free admission x) we went there on several occasion to see the baby Guinea pigs. We all loved the days out, Kesia Charlie Isobel.

On the third week (Wednesday), Jesson didn't cease to amaze us, as he decided to go back for his last visit to the RSPCA, he took lots of photos and steadily walked around the animals having lots of fun.

 

Thursday was a sleepy day still managing to play Animal Crossing with Mia.

 

Friday was the best day of the week Jesson bounced out of bed at 7am, tippy toed down the stairs started to play, and on his games. We had lots of visitors on the Friday The Pins (the twins, Jesson loved their company) playing for a couple of hours, Jesson was shouting, hitting his own head!! as he did!! playing laughing  what a day, he went on to play with Charlie until 10pm non stop all day playing.

 

Saturday 27th Oct

Saturday was a very sleepy day for Jesson he seemed so weak, he was so tired from the big play session the day before. Teatime he played on his DS with Charlie rude matchstick men drawing's!! they were laughing so much.

 

Sunday 28th Oct

 

Jesson hardly woke up, when he did he demanded his DS, he found the fish  he was looking for and payed his mortgage ( he so wanted that fish), and fell back to sleep.

At lunch time I whispered to him "Do you want me to fetch your Sunday dinner from Nans" he replied "No I'm going round to there house" we were amazed Jesson was so weak I put his little shoes on and he walked to the car, he fell asleep in the car, and layed on his Nans bed, he ate his dinner, played with his Lego. He told Nan to keep it, it went on top of the wardrobe! he said I'll play with it next time.

When we decided it was time to go, he  walked on his own to Gang, to give him a squeeze, and walked back to the car.

How Jesson  found the strength I will never know. He slept on the settee all afternoon, occasionally waking for a sips of water, he had no pain, but was so sleepy. I knew that Jesson's time was drawing to an end, my heart was being ripped out watching him slowly slipping away.

At 9pm we went to bed,  Jesson wanted to eat, corned beef and pork pie!!! he told me how much he loved me and I should win all the best Mummy competitions, my reply was, I would only win cause I had the best boy.

We cuddled up, and contently smiled at each other, kissing each other, holding hands as we fell to sleep.

Jesson woke up several times very unsettled.

 

29th Oct 2007

 

 I'm not sure writing about his passing is appropriate.

 

Jesson woke up at 6.20 am screaming and very anxious, I still find this difficult to think about.

 

Jesson passed away next to Mummy, Daddy Nan, and Nannie Ros. at 2.25 pm

 

Thanks to the community nurses we managed to keep Jesson at home.

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A Special Boy with a special name .....  writtten by Auntie Lisa xxxx

 

What's In A Name?

J is for the Joy you gave us
E is for the Excitment that made you scream with delight
S is for Supa mario that gave you a buzz
S is for your Sparkle that shone brighter than christmas lights
O is for Orsom a word I cannot spell
N is for Nutty what we would give to hear you yell!
W is for wonderful that was you
R is for a Rankine Wragg through and through
A is for Amazing that much is true
G is for Greatness of child who stood proud and tall
G is for the GIFT OF A BOY CALLED JESSON WHO WAS AN INSPIRATION TO US ALL!!!

 

The celebration of Jesson's life
 
Jesson's Funeral service will be carried out
 
On
 
Monday 5th November
 
2.30pm
 
At St Andrews Church
 
old Aylestone Leicester
 
Afterwards at the
 
Walkers Stadium
 
everyone welcome!
 
No flowers, all donation to the Neuroblastoma Society  please send to The Co-op Welford Rd,
Leicester.

 

Jesson passed away 2.25pm 29th Oct, at home with his family all around him.

 

We love you sweetheart xxx

 

I will update when I can find the strength.

 

My heart is breaking.

 

Tuesday 23rd October 2007

Jesson has had a really good few days, we have even been out and about.

 

Jesson has been visiting Stonehurst farm, as you may remember Jesson's love of small furry creatures. At the farm there is Guinea pig area, and he is totally in love with all the baby ones, we managed to hold lots of very little ones.

News:

After many years of trying, our very close friend Melenie has been trying to kiss Jesson, it's been a bit of a standing joke. She asks every time she sees Jesson if she could possibly kiss him, knowing the answer will always be a very firm "NO"

On Friday evening Jesson decided he wanted his best friend Charlie to sleep, and due to the situation we had said it was not a good idea, but after desperate begging and constantly saying "please", he went with a new tack tick, Jesson sat up and said "I will give Mel a Kiss if you let us". With that we couldn't refuse, we know how she had waited for this kiss. we have photo graphical evidence, he even did the pose long enough for a long photo session.

Saturday morning after the sleep over, Jesson did this almighty yell, my heart sank and I ran to him, he said "look look what's happened" I could n't see, "there look it's my tooth" Jesson was in shock.

In the afternoon we went back to the farm where we had lunch, finished off with ice-ream, Jesson yelled again sure enough another tooth. He said "I can not believe how one kiss could do all this damaged. We have laughed with him so much over this.

Medical news:

Jesson  has been pain free, and is still eating absolutely loads due to his steroids.

He has bruising and swelling around both eyes, and is looking very pale. But I would say really happy, constantly being very sweet and loving, thanking me constantly for my love and care.

xxxxJesson you little sweetheartxxxxxxx

 

Wednesday 17 October 2007

Jesson's days have been up and down, he had  a lot of pain over the weekend, this was absolutely heart breaking to see him suffer so much, and be totally helpless.

Jesson is now on fentanyl patches, and the dose has been increased twice, we are hoping to keep Jesson comfortable, with as little intervention as possible.

On Monday Jesson started on a nerve pain drug called Amitriptyline, this seems to have worked well, helping with the nerve pain that is cause by all the skull disease, and it has a subtle antidepressant effect and  also it sedates him before bedtime.

Jesson is on day 8 of the 17 day regime of high dose steroids, this is to help with any swelling, his appetite is amazing!!!! non stop!!!!

Jesson is developing lots of new lumps and bumps.

Jesson is very quiet laying down all day, but seems reasonably happy, we are cherishing every moment xxx

 

There has not been a day go by when Jesson has not thanked me for being a really good mummy who takes really good care of him.

                  xxx I love you Jesson with all my heart xxxx 

 

Wednesday 10th October 2007

Jesson is now 8 yrs old

He had the most fantastic birthday bash!!! everyone really enjoyed all the fun!!

Face painting, fireworks, confetti bomb, the  balloon release.

And best of all to see Jesson playing in the garden!!! he really enjoyed the company of his friends and family.

We have managed open most of his presents and play with them, the playmobil hospital was fun!! 6 hours to put it together!

We would like to thank Wishes 4 Kids for organising a limousine to KFC, for Jesson, Kesia, Mia, Charlie, Jordan, and Isobel.

Jesson's pain is mainly well controlled, he has a pain patch now, this saves him swallowing any medicine, and he is sleeping very peacefully.

 

07 October 2007

WE ARE HOME

JESSON 8TH BIRTHDAY !!!!!

NEARLY 4 YRS SINCE DIAGNOSIS !!!!

JESSON IS VERY EXCITED

 

Jesson  had a seizure Friday afternoon, we went in by ambulance and had an emergency CT scan.

We received news we were dreading. I have not the strength to put it into words today, I will update as the week progresses

 

02nd October 2007

Hi,

Jesson has had a tough couple of weeks. Last week he suffered leg pain after his radiotherapy, he has been generally very off, and down.

Jesson hardly moved over the weekend, and didn't speak very much, very unlike our very loud Jesson :-(

Monday Jesson had blood and platelets, his platelets were 7!!! We have increase his MST (slow release morphine) he seemed to be a little brighter.

Today Jesson returned from the hospital feeling very unwell, constantly heaving and complaining of leg and eye pain.

We really hope Jesson has a great weekend as it is his 8Th birthday. We  are keeping things low key, we don't want to burn him out x

 

20th September 2007

Jesson has deteriorated since Friday, he is in a lot of pain.

 

The plan was not to go back to  London, even for scan results, but yesterday as Jesson was laying wonderfully having his scan, Dr Gaze popped his head around the door and he sat with me through the scan, he confirmed that Jesson is progressing again. He also went through the positive affect of the  MIBG therapy that Jesson had 3 months ago, he pointed out that the huge tumour that was protruding through his skull bone, has dramatically reduced, it was still lighting up but the size had reduced.

 

So as far as treatment, we are so limited because his blood count has not recovered, so we think the plan is radiotherapy on his painful leg areas, and back on oral etopiside.

So next Wednesday we are back to UCLH for radiotherapy!!!

 

Jesson said his best part of the trip to London was seeing his friends Pascal and Graham xx  not forgetting The Sound of Music, at the Palladium.

 

We are trying to be very positive for Jesson, and we keep reassuring him things will get better, so if you see Jesson lots of positives vibes :-)    :-)  xxxxx

 

Jesson will be 8 years old on October 7th, we are looking for ideas (what to do)

 

October 16th will mark 4yrs since diagnosis, and to think in those 4 yrs Jesson has been on constant treatment, as the disease has never really gone!!

 

16th September 2007

Hello All,

We have more to add to the roller coaster journey........

We would like to mention our special little friend Ryan Webb, passed away Monday 10Th September the day before his ninth birthday. He put up an extremely brave, strong and long fight against the horrible dreaded disease Neuroblastoma. Ryan was diagnosed in the January after Jesson, they were partners in crime, I think ward 27 dreaded the day when they were both in patients at the same time, we could mention so many situations that would raise a smile or two!!! cheeky, mischievous, loving, gorgeous Ryan, guess your running them ragged up there!!! you little bugger. We all love you Ryan xxx you will be missed so much xxxx

Ryan's funeral will be at Gilroes Cemetery on 24Th Sept 1.45, no black to be worn, red and green if possible (Ryan's favourite colours) and red and green ribbons on your car.

 

We have had a wonderful holiday, the weather perfect, the accommodation was great, so "home from home" many thanks to Tom's Retreat, keep up the great work Elaine, you enabled us to have a quality holiday. www.thomasball.org.uk

We went over to the Isle of Wight, we hired a fabulous baby pink coloured new camper van, it was so cool, we had such a giggle, the children had such fun!!! Jesson was playing football with Kesia they had such fun, laugh a minute quality family time. Thanks to Sarah for making the camper van experience very special, Jesson loved the home made cake (nut free as well). www.isleofwightcampers.co.uk

 

Jesson and Kesia started back school, and things were going very smoothly, until Friday I went to pick Jesson up from school and he was really struggling to walk, he is back on morphine and hurting in the top of his leg and head (on the other side of the first tumour)

So we went into hospital Saturday morning and Dr Visser gave Jesson a very good examination, he thinks he has a strain, but it is worse due to bone disease. So here we go again!!!!!!!!!! the plan is, back to London this week for scans, and hope they can suggest something to to relieve Jesson's pain, possibly some radiotherapy or chemo, who knows.

 

 I will update when I have some news on the scans, I will be scrutinising with my very untrained eye.

 

Monday 27th August

Well guess you are all wondering where we are and what's happening..... 

Well the last few weeks since our return from London UCLH we have been very busy.

For the first few weeks we were very connected to the hospital as Jesson was receiving regular blood platelets. Jesson has endured many cannula's and butterflies, he has been wonderful as always, he is so accepting and so so brave. I really don't think I would be as strong and brave. Jesson's blood count seems to be holding for the last week, so I'm hoping there will be less pokes for Jesson, we are waiting to see if he will be able to have another central Line (port). I asked Jesson what he want to do, his reply was, "I'll do whatever you want me to Mummy". he is so sweet, loud but sweet!!!.

 

As far as his health we are really unsure, we are waiting to go back to London for end of treatment scans. All I can say, is that he seems great, and the lump on his skull has dramatically reduced, it has not gone but certainly gone down a lot.

 

Now I guess everyone thinks I feel so much better.... well I do, but it is always tainted with worry. Jesson's little friend Ryan who we have often spoke about, has  also had the MIBG therapy therapy. Ryan's treatment was a few weeks before Jesson's, he seemed fine when he went back for his end treatment results, and  the news was, it had spread to his liver. At this time we are hoping and praying for Ryan and his family for things to carry on being very peaceful.

 

We have had lots of fun over the summer holidays, Jesson and kesia and been best friends, playing together constantly, we have had camping party's and lots of other fun. We have also had sleepovers which the children always love.

We are hoping to going on holidays soon, to Hampshire, I'll update soon as I know more.

 

I also have to say how sad I am because the summer holidays are drawing to an end, I just love the children being at home, we have so much fun.

(-:  We are home  :-)  

Finally we are home,

Jesson lost his  port due to a very nasty infection, the pain was really awful. He was rushed to theatre just before the 2nd MIBG.

The doctors suggested a pic line for the second MIBG, unfortunately Jesson's little veins were no good, he came back from theatre with no pic line.

He told the anaesthetist he wanted two tablets in his bottom (pain relief!!) and didn't want them to dress him up in a pink dress and make him dance, whilst being asleep.

They were laughing so much. 

The second MIBG was done using cannula's, it was a nightmare!!!! chemo going through a cannula, MIBG plus blood platelets, and antibiotics. He has had so many cannula inserted there are no veins in his hands or feet.

We came home when his radiation levels had dropped enough, we had to stay in Leicester Royal Infirmary for Antibiotics, (more cannula's)and also for blood and platelets.

Generally Jesson seems overall so much better than when we went to UCLH for the treatment, and his lump has really reduced, but it is still visible, we will have to wait for scans in about 5 weeks to tell us how well this treatment has worked. The pain and vomiting seems to be less, and not as intense.

We are happy to have Jesson being his happy, polite, cheeky, personality back. 

Saturday 23rd June

I thought I better let you all know how things are going, we have had the first infusion of MIBG, it was all very scary stuff!!!!!  3 lead lined containers 3 men (scientists)  to administer the infusion, after the first infusion we left the room, and that was it !!!!!!!  from that point on were unable to touch and very limited contact  for 8 days.

 

 As the days went on Jesson and I adapted hugging, after a few day we did glove hugs xx xx bless him he wanted to hug me soooo much, so  I suggested a glove hug where he stood behind the lead panel and hugged my hand in a glove, it made me so sad :-(  

The days pasted and it wasn't too bad, he was so good and the treatment was very well tolerated.

I was so proud of him throughout his treatment he was always polite and friendly to all the staff. The staff have all been really  really great. Thank you xxx

 

On the medical front so far, there is an improvement, the lump is smaller on his head, (not a lot) and the symptoms as far as headache and vomiting are not quite as bad, he has ate fairly well too.

It will be quite a long time before we know any news as far as scans.

 

We were let home Friday for the weekend, but Jesson has a port infection at the moment!!! he is going into Leicester twice a day for IV antibiotics.

We go back to the UCH on Sunday afternoon, as he needs a blood transfusion, and a new line (we can not access the port) to restart his second dose of MIBG on Tuesday, we hope it isn't delayed.

We think we will go to GOSH London for this procedure, it will be done under general anaesthetic

New photos added on Photos page from the trip to Legoland, go and have a look....

 

Thursday 7th June 2007

We have arrived home for a few days, after Jesson's scans.

He has been really off, with lots of vomiting and pain, this is due to pressure on his brain from the tumour.

 The two days of scanning were difficult for Jesson because he had to keep still for so long, the scans were very extensive. he had an MIBG scan which lasted a lot longer than we normally have, followed by many other test he does not have in LRI. He also had a PET scan, he thought that was really cool!!! because he thought it was for pets (he was only  joking!!!)

We could see the tumour on his head really glowing, it is huge, guessing looks like the size of an apple.

We are hoping to go to Wickstead Park tomorrow for Kesia's school trip, we are taking Jesson if he is well enough.

We are going back to London UCH on Monday.

Monday 4th June 2007

We have been having good days and bad days, he has been vomiting and suffering pain. The lump on his head seems bigger!!

The weekend has been great, we went to Legoland Windsor, Jesson, Kesia and Mia, had a great time.

We are just going to get the train to London, we are going to the UCH in London where Jesson will have 2 days of scanning in preparation for next weeks MIBG therapy to begin.

Sunday 27th May 2007

I thought I better let you know how things are, we have had a really rough couple of weeks, he has really struggled to recover from tonsillitis, his energy has been low, in a lot of pain in his head, and lots of vomiting. Jesson has lost 3 kgs!!!! it all came to a head Thursday evening when he was screaming non stop for half an hour, bearing in mind he never cries we knew something was realty wrong, his pain was in his head. The tumour has doubled in size it is 11Cm's by 12 Cm's and protruding out of the skull.

 

We went into ward 27, they took blood tests and he was a little low with his HB 8.5!!! so not really low, but he was transfused last night, we have returned home this morning to a more normal Jesson, happier, cheeky cute ect.....

 

Only families know who are going through a similar situation, or have in the past, what we are actually suffering, we are on the floor in these situations, we are all crying rivers, and it sounds so simple in  previous paragraph.

 I'm really struggling to find words to describe  the agony of watching him sleeping in the hospital bed a 3 o'clock yesterday afternoon, he never opened his eyes from leaving his bed to the hospital, and never woke till teatime, he was suffering constant sickness .

To watch your child  suffer is agony, I know this sounds so grim, but it really has been. We want to see Jesson laughing and smiling again.

17 days to begin MIBG therapy

please send all your hopes prayers and strength to Jesson, in hope this will reduce some of this terrible disease from his little body.

(As you may be aware we are having problems with the guestbook as it has been targeted by spammers, unfortunately we are having trouble stopping it we do not want to shut it down but we are aware that it might be causing offence we will be monitoring the situation...John)

Monday 14th May 2007

Hi Everyone,

We had a very eventful week last week, we never thought the stem cell harvest would go ahead every  step of the way there were little problems!!!

It started with Jesson's clotting, that was all out and needed 3 samples, as there was a discrepancy on the level.

We had to go in to LRI at 6am for a peripheral blood sample to be taken. We arrived to the daycare area and Jesson looked particularly unwell and started being sick, the docs were discussing whether to go ahead, as he was having a general anaesthetic, eventually it did.

whilst the surgery was taking place he had platelets, when arrived in recovery he started coughing and was getting upset because he wanted some inhaler.

The groin was very sore where the femoral line was placed, after some time the coughing and pain settled, so we began the journey to Birmingham Children's Hospital.

When we arrived, we were very late due to the delays. The Bone Marrow Transplant team didn't hold out much hope that we would get many stem cells as Jessons white cell count wasn't particularly high, in the end we got 0.86 we need 3 units for the MIBG therapy.

The following day we managed to get 2.2 units!!!!!!! which is fantastic.

 

Since the harvest Jesson didn't seem to pick and seems to have deteriorated, we have been at the hospital today he has tonsillitis, he is having so much pain the morphine isn't helping.

He is fast asleep (7.30pm!!!) sweating and complaining of pain everywhere. I only hope this is the tonsillitis, and it soon goes. Jesson is a week and a half late with his chemo, which is also unnerving as the disease is having chance to grow!!!

We hope the fever breaks and we see some improvement soon.

 

Jessonís Treatment

I thought it would be a good idea to keep everyone well informed about Jessonís forthcoming treatment.

We obviously have a lot of questions and concern regarding Jesson, explaining his treatment in a few minutes is very difficult.

I will attempt to explain this procedure as simply as possible.

 

Friday 4th may 2007

Jesson will stop his chemo. He will receive an injection in his thigh everyday, it is called GCFS (it stings!!!!!!) I have to do these injections at home. GCFS is a bone marrow stimulant.

He will have these injections everyday until his blood count reaches a certain level (cd35 count)

We will go to the Royal Infirmary at 7am for a daily blood test, the blood will be sent by courier service to Birmingham Childrenís Hospital.

When the cd34 count is the right level, Jesson will go to intensive care (LRI) he will be sedated and a new line will be placed in his groin, this will be to enable a good flow of blood for the stem cell machine.

Jesson will go in an ambulance to Birmingham, and sit very still for 4-6 hours, hooked up to a stem cell machine.

At the end of the day we will find out if they have enough stem cells for the MIBG  treatment, we may have to go back the following day, and sit for another 4-6 hours. And there is a possibility we may not get any!!!!

Afterwards Jesson will have the new line removed, and hopefully go home, He will be sore.

Jessonís MIBG therapy will hopefully commence on the 11th June, in the UCH London.

He will be in isolation for a month, at the end of the month he will receive the previously harvested stem cells. The transplant will actually take place in Birmingham Childrenís Hospital. The stem cells should help his bone marrow recover, after the high dose radio active treatment. 

 It isnít a curative treatment; it hopefully will help reduce Jessonís disease

 

Friday 27th April 2007

Hi Everyone,

We are going away this weekend, to the east coast. We have morphine and codine for every eventuality!!!! Jesson has had a few bad nights with pain and a few days where he has been off.

We went to the UCH in London on Tuesday, we were discussing high dose Topotecan + MIBG therapy with such a lovely doctor Mark Gaze. Jesson will be isolated (without me) due to being highly radioactive for 8 days, he will be in a lead lined room, we hope to be out for a week, then another 8 day of treatment in isolation. I guess it is going to be both tough on Jesson and for us, as the doors have to be closed.

 We hope to start treatment on June 11th, before this treatment can commence we have to harvest stem cells, which is planned to start on the 4th May. We have also been to Birmingham Children's Hospital to sign all of the consent forms and Jesson has had  a lot of special blood tests taken, prior to the bone marrow harvest. We are really hoping to get enough else the high dose treatment will NOT go ahead.

Jesson and Kesia are very happy about going on holiday, bye for now x

 

Sunday 22 April 2007

short update

Jesson's first part of his marrow is clear, we are still waiting for the trephine.

He is back on etopiside (oral chemo)

In a couple of weeks we are planning a stem cell harvest, this will be after 2-4 days of GCFS a bone marrow stimulant, this helps the immature cells grow.

After Jesson's blood reaches a  certain level (cd34 count) Jesson will go to intensive care to have a femoral line inserted in his groin, under sedation.  This line will enable them to remove the blood cells they need.

 For the actual harvest we will then go in an ambulance to Birmingham Children's Hospital, because  Leicester Royal Infirmary don't have the facility to do this procedure. After the harvest Jesson would have the line removed.

We are going to the UCH hospital London, on Tuesday to discuss MIBG therapy, we have decided the time is right,  as the lump is not going away on Jesson's head, last night he complained of another area.

 Apart from this the last few weeks have been good, Jesson is having fun at school, and playing with his friends.

 

(Helen sent me this last week i have not been able to update until now sorry...John)

Hi all

Once again it is a along time since we have done an update, so I thought I ought to let you all know how things are.

Jesson is actually very well at the moment, going to school, playing with friends and doing very normal things. 

We had to have a 3 week gap with Jesson's Etopiside (oral chemo), this was due to his blood count not recovering quick enough.It should have been only a week, and then restarted.

In this time Jesson started with night sweats, and his head began to hurt. This is the visible lump that has been there for a couple of months now.

We went in to the Hospital and very briefly spoke  to the consultant, she said at the moment there isn't a lot they can do for the lump on Jesson's head, as it isn't hurting too much, they feel at the moment it is best left alone, but they did measure it, and it was  6cm-5cms !!!!!!  if it's documented they will keep there eye on it.

 

As we have noticed an  increase in the size of the lump, and the start of the night sweats, I think it is now time to explore another treatment.  

We are waiting for another appointment in London to speak to a consultant about MIBG therapy, this is a high dose treatment that is a highly radioactive. Jesson would have to be in isolation for a week, with out no contact even with me!!!!

 and he would not see Kesia for about a month!!!! so we have to weigh  up whether we think this treatment is beneficial at this stage in Jesson's life.

We have several test that have to be done, one is his urine levels to check the activity of the disease at the moment. We are still waiting for these results.

 

We had an ultrasound scan to check the femoral vein, this is in case Jesson's bone marrow is clear. The results show the vein is OK. This vein will be used to harvest stem cell, for after the high dose treatment.

Tuesday Jesson is having a bone marrow, done under general anaesthetic to see if it is infiltrated with cancer, if it is clear we will harvest cells, if not there may be an option of a lower dose radioactive treatment that does not need a stem cell rescue.

I hope I haven't confused you all to much with this information. But as you probably know it is very technical, so i guess it will unfold as time goes on.

I will try to keep you all updated

 

Just to let you know kesia has had a sore throat, she would like everyone to know and watch her take her medicine!!!! lol she is actually fine now, but she still says she is needing more medicine. bless xxxxx

Wednesday 21st February 2007

Hello,

I thought I better update the website. Time passes and usually no news is good news, but unfortunately this isn't so.

 I was in hospital over the weekend having suffered a miscarriage. We were over the moon when we found out I was pregnant.  Jesson  and kesia were also excited.

 It was a rocky road from the start of the pregnancy, I went for an early scan due to bleeding, we were told there was an abnormal looking sac and no baby, we went for a follow up scan 7 days later.Last Wednesday we saw our baby and it's heart beat, we were totally delighted. All to shattered, 24 hours later, I began to miscarry.We are pulling the pieces together, trying to regain the strange kinda normal, without our pregnancy.

Jesson is ok today, he is on antibiotics for sore ears and a cough, he seems happy playing with Kesia. He has began round 2 of Etopiside, we are hoping that this round of chemo reduces the tumour on the side of his head. Over the last week it is protruding, at the moment there is no pain. This area was very painful just before Christmas.

He is still enjoying school, and is achieving average results, there is no pressure on Jesson, the teachers  are all wonderful, and our priority is fun! so he can enjoy school. We are very proud of him, and he is wonderful company, always full of fun xxxxxxx

Kesia has also made major achievements this week, she has started swimming lessons, and is really becoming confident in the water. She has gained her first certificate at school, half way to her first badge! well done Kes xxxxx

Thank you to all my great friends x

 

Saturday 27th January 2007

Update on Dad.

We have had a very busy few weeks, with Dad being in hospital. I have been there everyday an sometimes twice a day with my Mum.

 He has done really well, he has progressed to walking on a frame, and gaining some movement in his arm. He still has very little feeling on the left side but with the help of the physios  he is re-learning old skills.

He came home yesterday, and was so happy, and we were thrilled! but he will need lots of care, and supervision walking. If anyone knows my Dad he's a fighter (where does Jesson get his fight from!!!) and he wants to run before he can walk. So we have to constantly remind him to slow down.

Update on Jesson.

 

Jesson has been very pale recently, last Friday Jesson was admitted to LRI and he was spiking temps and feeling very unwell. We arrived at 5 o clock in the morning, after the doctors having a look at him they said he had tonsillitis.

 

They did a full blood count, and he also needed a blood transfusion, this took up most of the day. We were let home as Jesson wasn't neutropaenic, with oral antibiotics.

 

Since then he has been quite full of energy, but I noticed yesterday his colour is once again  very very pale. I will needle his port on Sunday and have his blood count checked again. I would say he is a little more tired recently, but other than that he seems pretty good.

 

We stopped the oral Etopiside (chemo) last Wednesday as his platelets fell below 50. This is the threshold they have set.

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WHERE DO I BEGIN

Last week we went to The Royal Marsden London, to talk about vaccine therapy.

We spoke to a well informed consultant, who has a lot of NB experience.

We had chest x-rays and Jesson had a thorough checking over, her overall opinion he was in pretty good shape. Signed all the papers as Jesson was going to have a general anaesthetic for the bleed procedure. We went back to the consultation room,  I asked when we could resume Jesson's oral chemo after the bleed procedure. At this late point we were told this was not possible! well after receiving this news we promptly left the hospital feeling not only let down but very disappointed.

The following day I couldn't leave this situation, so I contacted the Prof who was running the Vaccine trial, at this point he agreed to run the chemo along side the vaccine, to only find out the following morning, that there was not enough RNA extracted from the tumour.

 

 Well talk about double blow and roller coaster.

After all of the hard work and fighting there will be no Vaccine and we should have known this a month ago. :-(

As far as Jesson he is back on Etoposide (oral chemo) and seems well, his pain is settled at the moment.

His urine test showed slightly higher numbers, possibly showing more activity.

His frequent weeing has returned also another symptom of progression, but hoping to start back on the previous drug that help the situation.

We will be on the ward tomorrow for another urine check but this time looking for infection, if this is ruled out, they will probably start back on Tolteradine.

 

My Dad has had another stroke, this time worse than the others.

He isn't in very good shape at all, it appears to have took the use of his left side.

My heart is breaking xxx