Stephen's Blog - 28th November 2007 - Treatment Update

Do you know when you feel your getting nowhere fast? That's what I feel like at the moment.

The antibody treatment in America needs to be given when the bodies immune system is very low and that's why it needs to be given within 90 days of transplant as the immune system would not have recovered from transplant treatment. We have not been able to do this with Emma due to complications Emma has had with her cancer, the main one being the 2nd major operation she had.

When I went to America in August to hand over Emma's medical files and to speak to the doctors, they advised me to get Emma over to MSKCC for tests and scans but these would of cost £1000's if done at MSKCC so when I came back to England and spoke to Emma's medical advisers, it was decided to have these test done at Alder Hey on the NHS for free. Now we all know that the NHS is not the fastest in the world but the treatment is free (well we all pay tax !) so Emma had these scans done in October. Thank God they came back clear!

With the scans clear and Emma is in good health, our British doctors advised that we should use the antibody therapy as a relapse treatment, currently Emma has an 80% of this cancer coming back!!!

So I spoke to America over the phone to advise them about the scan results and they have asked us to forward the reports and scans to them before taking Emma out for a consultation. This is the current hold up! We had a copy of Emma's notes and scans till August this year so when I asked the question on how to get the latest update and scans on Emma's notes I was told I need to reapply for them. So I done this but then a week later I received an email from the Access To Records stating that I do not need to reapply for them as I have already had them this year, they just need to know that dates I need, so I replied and told them again what dates we need.

On Monday I had not heard nothing so I phoned and was told the person who I need to speak to is not and to call back tomorrow so I called again on Tuesday and spoke to the person I needed to and was advised "they have 40 days to provide this service and at the moment they are really busy and only 3 people work in this department", think he was having a bad day!

Anyway, I told him about Emma and that we are waiting to go to America with the latest scan results and I was told that they "have this all the time and that they do not prioritise records as everyone needs them urgently"

So there you go, everyone is in the same boat and we just need to wait our turn. We are just thankful Emma is in great health at the moment as I don't know what I would do If she was very ill waiting for treatment knowing our records are just sitting there, waiting for someone to copy them before she could get life saving treatment! I think I would just rob them, as any parent would!

Once we receive these scans we can forward them onto America and then an appointment will be made and then a decision will be made for the next step in Emma's treatment but until the doctors in America have seen Emma we don't know what is happening.

If Emma starts treatment in America then we will start to fundraise again to help with on going treatment costs but until we know what is going on and the fact that we have raised the deposit amount we have scaled down the fundraising for now.

So that is where we stand at the moment but Emma is so well and "full of beans" we wish time could just stand still enjoy life as normal as possible as we have been for the last few weeks but deep down we know the next 5 years is going to be a fight until Emma is cured of this horrible cancer!

Tomorrow night we have been asked to attend Radio City for there Local Hero's Awards as Emma has been nominated for The Child Of Courage award, I think every single child that has to have treatment for cancer should get an award like this and if Emma wins it then we will be accepting the award for every single child that has had chemo, radiotherapy and surgery. Children are truly amazing and they put use adults to shame!

Radio City Awards

Stephen's Blog - 26th September - Childhood Cancer Act?????

I received this email this morning:

Hello Friends,

As you know most research into childhood cancer relies heavily on
charitable donations, we believe that there should be government
funded research into the biggest killer of children in the UK.

Currently in the US there is a Bill waiting to be passed by the
senate called the 'Conquer Childhood Cancer Act 2007' in which they
pledge to put £150 million dollars into medical research and
awareness schemes in the US over the next 5 years.

Only UK residents can sign

We believe we should have something similar in the UK! If you agree
please sign our petition http://petitions.pm.gov.uk/Kids-Cancer-Act/

Thanks

If you have a few minutes then please click on the above link. This would be great if the government started to put some cash into childhood cancer research.
 

Stephen's Blog - 24th September - Superhero

Yesterday we went to the finals of the Wigan Miniature Hero's award, Emma was voted into the top 10 and was invited to the finals to see who won. Last Wednesday a film crew came to the house to film Emma. This was a 3 minute video of Emma and we had chance to tell Emma's story. This video was played yesterday and then the judges voted on who won. This was held at a posh hotel and a very nice hot buffet was served. Emma never won but had a great time and the family loved the day out so thank you everyone who made the day possible. I will upload some pictures and video's of the event tonight.

Wigan Observer's Video Link - Click Here

Stephen's Blog - 22nd September - What Next?

Welcome to mine and Sam's new blog, we should of done this from day one but so much has gone on in the last 10 months we have not had time.

Well first thing I need to talk about is Emma's treatment. I went to MSKCC in New York in the first week of August and took all of Emma's medical files and scans to the hospital. I had a consultation with Dr Kushner, he had concerns about Emma's 2nd tumour on her liver, he said that from the notes he thinks Emma still has cancer all over her body and that because Emma went through transplant with this large tumour inside her then this would of increased her chances of relapse. Emma already had an 80% of relapse! He said we should get Emma to MSKCC for a full assessment, this would include scans and bone marrow biopsy but all this would cost more money. He then said that Emma would have some more chemo and then if everything was ok the Anti-bodies.

This came as a shock as I thought Emma was in remission and the 2nd tumour was nothing to be worried about as over 99% of the tumour was dead and there was no new neuroblastoma cells, to be told that was unreal, I was expecting a date to start anti-bodies not to be told Emma was not ready for them. Emma is so well at the moment, the last thing we want to do is make her ill again.

So I came home from America wishing I never went! but I needed to go, for Emma's sake! New York is not the best place for an ill child. All I can remember is the smog, cars and people....everywhere! but if it cures Emma of this cancer then it's where we need to go.

When I returned home I arranged to meet Emma's UK doctors, they could not understand why MSKCC wanted to give Emma more chemo but they agreed that because we have been told of the above they will do scan's on Emma and because this is on the NHS this will be free and not cost us £1000's in MSKCC.

Emma has scans booked for 17th October 2007, please pray for the scans to be clear!

So at the moment we don't know what is next, Emma might need more chemo or she could just get on with the anti body treatment. If Emma has more chemo in MSKCC then the cost is going to rocket! If you follow other children at MSKCC, like Jack Brown (www.jackbrownappeal.org), they have spent over $1,000,000 on treatment but without it would Jack be here today? and that's what it's all about.

So how much money do we need to raise for Emma's treatment, I don't know. We have enough to start anti body but we just don't know what is around the corner of this cancer road! Any money that we don't use on Emma's treatment will go to helping other neuroblastoma children and into research.

One thing I found out last week was that only about £600,000 went into research into neuroblastoma last year.......this needs to change, millions of £'s needs to go into research every year to help find a cure of this beast.