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

Sunday, November 9, 2008 6:43 AM CST

This will be a good-en!!!

Life has been plodding along pretty non-eventful, apart from the ongoing struggle Charlie faces with school, and his suspected ADHD/Aspergers

In September Charlie moved to class 1 – where he seems happier – after a few weeks I approached his teacher to discover why he is happier..... He doesn’t actually do any work! He wanders around the class and does as he pleases – and whenever demands are put on him he has a tantrum and shouts, screams, and gets physically violent – so they have been pretty much leaving him to his own devices!!

So I applied for Statementing myself – which they have agreed to do the assessment – great! And he has been referred to another Paediatrician who is assessing him for ADHD at present – we’ll cross the Aspergers bridge later if we need to.
I have been meeting with Charlie’s teacher and school psychologist to agree on ideas to encourage Charlie to co-operate in class and so far we are trying the token reward scheme – Charlie gets a token for each time he co-operates and it goes towards time doing something he wants to do. So far it is working.

Amy.......

At the end of September Amy woke one morning not able to walk and complaining of leg pain.


Yes we though the same thing too


We rushed her to the local GP, who sent us straight to A&E to see the paediatricians
Amy had bloods and urine done – and x-ray and then was admitted for further tests

We were bricking it at this point – but it turned out to be “Reactive Arthritis”
(Reactive arthritis (ReA) is an autoimmune condition that develops in response to an infection in another part of the body)
Amy was prescribed ibuprofen and paracetamol and sent home. We hoped this condition would go away within 6 months to 1 year – great!

But doubt still nagged at our minds, and Amy woke nightly with leg pain which was digging up painful memories from Jamie, and eating away at us so I returned to the doctor to beg Amy has “the Neuroblastoma test”

Our GP tried his best to reassure us this was text book Reactive Arthritis and we had nothing to worry about – but humored us and arranged for the test- a urine collection to go away for VMA/HMMA or Catecholamine measurement.
An appointment was made for Amy in the Rapid Access clinic at the local hospital where we attended 2 Fridays ago.

It gets better....

At the Rapid Access appointment Amy was examined and I explained that the pain had moved from her right to left knee, and then the Dr checked Amy’s heart.

His words were, “Amy has a slight heart murmur – I just need to go and confer with a colleague”

!!!!!

Then on his return told me he wanted to admit Amy for further tests, but tried to reassure me that the heart murmur was nothing – but of course it was already in my head – there was no taking it back!!!

Up on the ward another doctor managed to convince me that the heart murmur was nothing – most children have them un-noticed and un-eventful

He did however tell us that Amy doesn’t have Reactive Arthritis but Juvenile Rheumatoid Arthritis

http://en.wikipedia.org/wiki/Juvenile_idiopathic_arthritis

We don’t yet know which type Amy has, all we know so far is that she is Rheumatoid Negative and that she does NOT have Neuroblastoma! Test results are coming back slowly; I have to go back next week to see a specialist who may fill in some gaps.

Amy went to her first Physio on Friday and goes to Hydrotherapy on Monday – presently she struggles to walk as her knees are stiff and painful and she is on 8ml Ibuprofen and 10ml Paracetamol 4 times a day. She wakes 2 or 3 times a night in pain.

Personally I am gutted – another disabled child – another child in pain – here we go again! I am glad it’s not life threatening, but wondering “why me?” haven’t we been through enough crap?

My precious perfect gift from heaven! Bollocks!!!!

I am wondering whether to start another Caringbridge page for Amy so we don’t clutter Jamie’s page with updates and news – I will let you know when I decide

I will also find some recent photos of the kids to put in the photo section...

At least you can expect an update within the next month!!!

Love Kelly
xxxxxxxxxxx
www.beebo.info

By the way...

Amy went for surgery last week to have the foreign object removed from her right ear – it went well and she was in and out within an hour – and already sat up in recovery smiling when I was called in – all the nurses kept saying they wanted to take Amy home!

The foreign object turned out to be a tooth from a Bionicle (Lego) figure

We're hoping she doesn't shove anything else in!

Read Journal History

Hospital Information:

At Home sweet home
Teignmouth
Devon
United Kingdom

Links:

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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.