Ben is ill again

[Iancider]

We all look for good news at Christmas but life can be tough.

Ben Conolly is ill again.  I first heard about it last week but wanted to make sure it was okay to make a public announcement. 

Ben's cancer has returned and rather suddenly.  He has become anaemic again and has had to be taken into hospital.  This time it is going to be a long stay and it looks like he will have to have a bone marrow transplant now.  His parents Suzi and Sam are with him full time now and Clic Sargent have found them accommodation so that they don't have to travel.  I hear that Ben is still very active on facebook so you can follow his progress there.

Ben is a real fighter and we can rely on him to stay positive and determined but any wishes you post here we will pass on to him - I am sure it will help.

Ian

[Gary RH7]

This is very sad news especially at this time of year. Please send my deepest regrets Ian and my thoughts will be with the family over Christmas. I hope all works out well as the family deserve it.

[Facial Hair Optional]

Yes that is bloody awful news at any time of year let alone at Xmas.

From what I saw of him at Combe he is a strong lad with a positive outlook and that can only help.

He doesn't know me but please pass on my wishes for a full and speedy recovery Ian.

[Hairy Santa]

My thoughts will be with you all at this time

wish you well Ben

[Moleman]

I think you told me he has to have a bone marrow transplant? If I'm right do you know where to go to give some? I don't I would be a match for him but it has spurred me on to give some mate. 

[Iancider]

Moleman makes a good point.

Bone marrow donors need to be alive but it has to be a tissue match too.  But any body can volunteer to be a donor to save somebody's life at some time.

[Facial Hair Optional]

Can it be stored then? I didnt realise just anyone could donate marrow. So it's a bit like giving blood in a way. Bit more complicated though I expect?

[jmad]

From what I know of bone marrow transplant it is not taken and stored like blood but they keep a register of people that have signed up as a donor.  If you are a tissue match to somebody that needs a transplant then you will get a call and they will take the donation then.

It's easy to sign up just with a quick blood test and a very worthwhile thing to do. Also clic Sargent are a great charity as they not only help the children but also the family, so if anybody is doing any charity event do think about them.

Any way my thoughts are with Ben and his family.

[aliwizard]

my thoughts go out to ben and his mum and dad, ben is having a rough ride with this cancer, but  I am shore the thought of him getting in the go inspire car will keep his spirits up, anything that you can do for cancer charities  is fantastic  i.e. being a donor, or raising money for cancer research ,having had lukhemia I now how important the money is for research purposes, I now from speaking to specialists that they are confident the they will find a cure one day, when who knows ,but one day, a very happy Christmas to ben and his parents ,to all the Bristol kit car members have a good one.

[Moleman]

I have looked it up today & the best way you can register to be a bone marrow donor is if you are a regular blood donor you can register while you are giving blood you as they just take a little bit more blood to put you on the register.

You do need to be at the ages of 18-49 & in good health.

I qualify to all of these rules & I'm due to give next month so I will be doing putting myself forward. If you know of anyone else who can please encourage them to do so as well. You can also register on your first time of giving blood if you haven't done it before. 

[Facial Hair Optional]

You do need to be at the ages of 18-49 & in good health.

Well that is disappointing, I'm too flippin' old! I imagine having an auto-immune disease would have excluded me too 

Are you sure you qualify Colin? I would have thought being a loonatic (on track) would have excluded you!! 

I'm due to give next month so I will be doing putting myself forward.

It'll take that long to get the alcohol out of your bloodstream by the sound of things Col!!!

['The Gaffer']

It is indeed very sad that Ben has fallen ill again, I have already passed my well wishes to Ben and family.

I have an insider who gave me this information should you wish to get on the register..

Firstly you join a Donor Registry. The British Bone Marrow Registry (BBMR - run by the NHS) or The Anthony Nolan Registry are the main UK ones.

To join the NHS,  BBMR you need to be 18 - 49 years old and be a Blood Donor.

To join the Anthony Nolan registry you need to be between 16 and 30 years old.

You would have to fulfil medical criteria which includes not having a BMI over 40 or being under 7 stone 12 lbs and not having any of a selection of nasty illnesses, heart problems, history of cancer, insulin dependant diabetic, arthritis and a few more.

Once on the registry you may never be contacted as the matching process is so scientific. The registry will get a record of your tissue type from a DNA test taken from either a saliva swab, saliva sample or a blood sample. From that DNA a basic tissue type is compiled and held on computer. The result is a string string of numbers that needs to match the other persons numbers. Other factors affect the chance of donors and patients matching as well. Its quite an interesting subject.

70% of patients will need to find an unrelated match as only 30% will find a match from a family member. This proves how complex the matching is when your own family dont match you.

If you are selected as a match, there are two ways of donating Bone marrow (now mostly known as a Stem Cell donation). Stem cells are the 'building blocks', which can grow into any of the other normal blood cells such as red cells, which carry oxygen, white cells, which fight infection, or platelets which stop bleeding.

The most popular method is a stem cell donation.  The blood is basically taken via a little tube inserted in one arm, the blood cells are then separated in a machine next to you and then the blood minus the stem cells is returned into your other arm. The little bag of stem cells is your donation that is then given to the patient in a similar procedure - normally the following day. The downside of this method is that you have injections for four days beforehand to boost the amount of stem cells in your system and this can make you feel a little like you have a cold.

The second method is the traditional Bone Marrow donation. They still end up with the same stem cells but they come from the hip and lower back area. Put basically you have a general anaesthetic and the procedure is all done relatively quickly and results in a more substantial donation. The donation is then separated down into blood components in a lab with the separated little bag of stem cells being the main aim. The donation procedure is not as painful as some may think, more like a bruised feeling - some say its like they have been kicked, not great but not as painful as some are led to believe and pain relief tablets help this. Obviously everyone is different though and its not the same feeling for everyone.

For both methods of donation the amount of cells can vary depending on the height and weight of the donor. You would only donate when selected from your basic tissue type. Then further ( confirmatory tissue typing) is carried out . Anyone else in the world who potentially matched would also have confirmation typing carried out and the end result wouldn't necessarily be a 100% match.

Sometimes if the patient is lucky they may find a full match but other patients may only find a partially matched donor. A little like trying to get all the numbers on a bingo card to match fully with another card anywhere, you may only ever find one that partly matched and that would have to do.

All the cells from your little bag of donated cells will be counted in a lab machine and then popped into a cool box and sent off to wherever the patient is in the world by a courier who doesn't let the cool bag out of their sight - even for one second.

[SPAXIMUS]

Very sad news but progress is being made every day in research and even though a lot of money donated is spent on admin and advertising without donation research would never have got this far.

Just another small point, my Daughter is a Doctor, working in A&E at present. They cannot save everyone and what makes a double tragedy is when suitable organs for transplant are wasted because families do not allow organs to be removed, even when the deceased is a registered donor.
I am a signed up and my family all know that if there is anything that they could use it must be allowed, if I tragically die. I would urge everyone to make sure they are signed up and family are aware of your wishes.

hopefully Ben will get what he needs.

[Iancider]

Phil,

Thanks for that very comprehensive and helpful write-up.  I now learn I am too old for this but every part of me is available on my demise already but those that qualify here is something you can donate while you are alive and it will save a life.

What better Christmas present could you give?

Ian

[Moleman]

I'm booked in next week for my sixth monthly blood donation where I can also register to do the bone marrow while I'm there. so hopefully it will be at the same time.

Any one else able to do so then please do. 
Thanks Colin.

[Iancider]

A further update on Ben,

For a while his condition got worse still and he is now in intensive care but showing signs of turning the corner.  He has had to have a feeding tube inserted today because he is too weak to feed from the direct  effects of his illness but also from his now very toxic chemo.  But today there is a little good news because his blood results are improving and better nutrition will help.

We know he is a super-hero and if anybody has the fight to get through this it's Ben.

Ian

[Facial Hair Optional]

Good luck Ben, keep fighting matey 

['The Gaffer']

Puts life into perspective really, here I am catching up on a bit of news on TV after a long days work finishing at 11pm and thinking wow, that was a stressful day. Then I think of Ben being fed by a tube, potentially fighting for life and I think, ok life's good right now in comparison. Go on Ben, you can beat this, my thoughts are with you.

[Iancider]

Further news on Ben - a little more hopeful this time.

He has been very ill and has spend a long time in intensive care.  Today he is well enough to come out.  He requires a very special drug to treat his very rare Leukaemia and that has been made available to him now.  If he carries on making good progress and the cancer remain in remission, he is due to receive a bone marrow transplant in 4-5 weeks time.  Suzi, his mum, seems pretty upbeat and is looking forward to re-engaging with Go Inspire.  She sends her thanks to everybody for keeping the activity going while they are unable.

Ian

[Moleman]

Good to hear mate. 

[sanzomat]

Fingers crossed...

[Iancider]

A further update on Ben Conolly,

As you know Ben has been very ill with leukaemia again and this time it destroyed his Bone Marrow. 

His spirit is still good, he is still strong willed and coping well with what has been a truly awful regime of extreme chemotherapy.  This week he has been going through a process that his father Sam described as "bleaching" which is an extreme version of chemo that intents to remove every scrap of cancer.  Not many people are ever accepted for this treatment because they have to be mentally and physically strong to endure it.

Tomorrow is Ben's big day - his bone marrow transplant.  A donor has been found in the USA and is a perfect match.  The process is rather like a blood transfusion and relatively gentle compared to what he has been through so far.  He will then spend several months in the isolation unit unable to be exposed to any form of infection.  His ordeal is far from over but he is now through the worst of the treatment and he retains his positive outlook.

Just so that you know just how well Ben is coping - he has been coaching people facing chemo for the first time.  He tells it how it is and everybody seems to appreciate his candour and his ability to endure it all.

Father Sam and his Mother Suzi send their thanks for our continued support and for keeping Go Inspire progressing in their absence and you can be sure as soon as he is fit Ben will be in the driving seat.

Ian

[Facial Hair Optional]

A very strong and brave lad. I am sure I would not cope as well.

Get well soon and for good Ben 

[sanzomat]

Puts one's own troubles into perspective.

I can't wait for him to be overtaking us on the track!

[garry h]

A brave lad indeed good luck Ben 

[Gary RH7]

He's got a few weeks rough in front of him so we wish him and his family all the best and a quick recovery.

Gary

[Iancider]

Latest news on Ben Conolly

He was allowed out of hospital for a day yesterday.  His immune systems seems to be working and so far the bone marrow transplant seems to have been a success.  He still has months of hospital attendance but at least he got home for a day.  He is happy and chirpy. 

Ian

[Facial Hair Optional]

Great news Ian, let's hope he goes from strength to strength now then 

[Gary RH7]

Good news