Our Hero - 15th April 2000 - 31st August 2005

Welcome to Jamie's Online Journal

On 4th August 2003 Jamie was diagnosed with Stage 4 Neuroblastoma.

There is no cure for this rare and aggressive cancer, and at diagnosis, Jamie was given just a 20% chance of surviving for 5 years.

Jamie proved to be a fighter, and during the following 11 gruelling months he endured; 12 weeks of intensive chemo, 6 hours of surgery to remove the tumour, along with a squashed kidney, complicated digestive problems caused by the surgery, which meant Jamie needed to be fed via TPN and Jejunostomy, over 6 weeks in Bone Marrow Transplant Unit strict isolation for 4 days of high dose chemo, which was immediately followed by Stem Cell Rescue - which caused Jamie to have a rare and potentially fatal heart condition called Pulmonary Hypertension which required a short stay in ICU and was successfully treated with prostoglandin given via continuous infusion for 3 weeks.
When we finally got to go home, in May 2004, Jamie had to take 6 months of Accutane (Retinoic Acid). This last course of treatment was ended 1 month early, in mid December 2004, when Jamie was rushed to hospital with abdominal adhesions with intestinal obstruction, which was caused by his previous abdominal surgery. This was quickly corrected by a short operation, and Jamie was back home within a week.

Jamie was declared Cancer Free in October 2004, and had started school.

On 28th May 2005, after Jamie had been unwell for just a week, we discovered that he had relapsed, which meant that the cancer had come back with a vengeance.
The Doctors said that there was no hope of Jamie surviving this time, it had attacked his Liver and Bone Marrow worse than at first diagnosis. And Jamie's body had taken such a knock during treatment to fight it the first time round that it was weak and the same treatment would most likely kill Jamie this time round.
Doctors predicted that Jamie had a matter of just a few weeks left to live, so we took him home to make the most of what precious time he had left

3 months later Jamie peacefully passed away, at 3.30am on Wednesday 31st August 2005
He was in hospital, with his parents at his side.

Jamie is missed every day.

Journal

I normally start my updates with “oh gosh has it been so long?!” and “sorry I’ve been slack!”
Blimey – it’s been nearly 3 months!!!!

We’re all well – at present! We’ve had the rounds of this that and the other type of lurgy – Dave’s been ill more than any of us – that’s men for you!!
Charlie’s had a couple of bouts of time off school for tummy bugs and temperatures, Amy’s had a constant cold, I’ve just got over Tonsillitis, and Dave’s had Man Flu, Tummy Bug, Upper Resp Tract infection, and many a couple more that I can’t recall!!
But yes – at present all are well and happy!!!

I’ve recently taken on a work at home job, doing marketing for Dave’s parent’s business (Garage doors, Security shutters, gates – anyone want any??) and then last night also took on a voluntary role of newsletter and website editor for Torquay District Cats Protection League.
This came about after I adopted a cat from the branch and got sucked in!!

The new addition to the family; is an 8 year old Devon Rex called Skye – I will post photos

Photos of Skye the Cat

Skye lived in a multi-cat household, and when she came to me she had already had all her teeth removed due to decay, and has digestive issues requiring a special veterinary diet. She’s a house cat – but I have given her the choice to go out if she wants, and have fitted her with a snazzy collar with our telephone number on one side, and “Do Not Feed” on the other – then anyone silly enough to offer her a saucer of milk would have been warned before they get a nice mess to clean up!!!
Skye came to us in mid April and has settled in well – she has a great personality, and tolerates the dog as long as he doesn’t come too close to her – which can get tricky when she’s on my lap and the dog also wants attention! A few times she has been sat on the sofa and he’s walked past wagging his tail and she’s been walloped, which she has not enjoyed!!!

Race for life – it was a boiling hot day, and we went 2 minutes over last year’s time of 38 minutes! But we had a laugh, it was a good day, and we raised around £504 – thanks to everyone who sponsored me.

Amy is enjoying her 2 weekly sessions at the local posh Nursery, and turned 2 on 14th June – we had a small gathering of family and friends at home, in the garden with the gazebo up, and Amy got spoiled as usual.

Charlie is still struggling at school – he is in a full class of 30 to 32 children, and has been disruptive and hard to manage at times. I got him referred back to the paediatrician to be assessed for Aspergers and am also in the process of applying to have him statemented for special needs education – hopefully we will get things sorted for him and he will start to enjoy school and thrive.
At home Charlie is happy, and we hardly have any problems with his behaviour – he is still obsessive, and wilful, but as we are in a routine and Charlie gets consistency we rarely face difficulties.
In September Charlie moves up to Class 1 – it feels strange that Charlie is progressing in school further than Jamie did – this time in 2005 Jamie had just relapsed, and missed moving up from Reception Class to Class 1.

Charlie turned 5 on June 10th, just 4 days before Amy’s birthday – he had a party with school friends at the local soft play centre, Bearfeet, and then we had a family outing to the Zoo, which was postponed till Father’s Day because Dave was ill on the week of Charlie’s birthday.
Both kids enjoyed the zoo – Charlie enjoyed the Mandrill monkeys the best.

Jamie’s sunflower seeds have been very popular this year – lots of people have requested them, and I am looking forward to seeing photos when they have bloomed.
I planted 12 seeds myself, hoping to get 8 plants – which I did, but along the way we have lost some to breakages, and slugs and now have 4 – but they are doing great and look like they are about to flower very soon – I will post some pics on the Sunflower section of the main website

Jamie's Legacy Sunflower

Please remember to take photos and email them to me at our new email address; kelly@beebo.info – the best ones will go on the website.

More sad news – we have lost quite a few Neuroblastoma Warriors since the last update, some I knew personally;

Austin Melgar

Emily Adamson

Spencer

and Michael – who has no website

I have also had requests to add lots of new Warriors, both in treatment, NED and Angels – and the Warriors section is growing!!

The end of this month marks Jamie’s original diagnosis and then his Eternal Life Date is 31st August – I am thinking of something to do to mark the day, but haven’t decided yet.

Love Kelly
XXXXXXX

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 197982 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.