A Long Series of Ups and Downs

As you will know, a couple of months have passed now since Gaurav’s transplant.  We have been through a lot of drama and near-crisis situations since then but can at last tell you something of what has been going on.

We began to see a steady increase in his white cells from Day 10 post transplant which is of course what we hoped and prayed would happen.  You may not know that every child
has different chemotherapy-related problems and Gaurav’s main problem was chronic diarrhoea which meant he had a very sore bottom and his skin around that area was badly affected. He even ended up with a catheter for a week or so because passing urine was so painful. Eventually the side effects of the chemotherapy slowed down.

He stopped eating and was given nutrition via IV for a while and eventually a naso-gastric tube was passed through his nose to his stomach for us to start giving him calorie-filled feeds.

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In the middle of January the hospital said that we could have a brief home visit which was wonderful: we tried a few hours at home with Gaurav which felt so good and we could see how much more relaxed and at ease he felt being home. But then he began to spike temperatures and suffered from some Graft v Host Disease rash. This is usual post-transplant and after a week or so of steroid treatments this calmed down and we were ready to try home again at the end of the month. Again we had a few hours at home one day and had planned an overnight stay but before that could happen he spiked a temperature again.

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Gaurav and Sunny at home for a little while: Sunny is giving him a gravity feed of water as he wasn’t able t drink anything by mouth

Over the next few days we saw him swell drastically – his face and neck were badly affected and his eyes were forced shut because of the swelling. His temperature was spiking every two to three hours and he was in considerable discomfort as he waited until his next dose of paracetamol was allowed.  We do have photographs of Gaurav at this stage of his illness but have decided not to publish them – we feel that some things should remain within our family.

It was confirmed eventually by blood tests and a biopsy of his lymph nodes that he was suffering from a post-transplant lymphoproliferative disorder caused by the Epstein Barr Virus, more commonly known as glandular fever.

You will understand that this was an incredibly testing time for us all. Our consultant told us that in the 14 years she has worked with bone marrow transplant patients, this was the first time she had seen this happen post-bone marrow transplant – this type of disorder is more often seen in patients who have received solid organ transplants.

Thankfully, two weeks later it was all under control. Unfortunately though the drug that was given to treat it has meant that his immune system is further suppressed and will take up to twice as long to recover.

On the basis of third time lucky, we thought about trying to go home again BUT before we could go… You guessed it he spiked again! This time there were signs of infection and he was treated with our old friend,  IV antibiotics.

For the past two weeks Gaurav has been sleeping a lot! Some days 20 hours. This is most likely due to fatigue that a person can normally suffer once they have had glandular fever but our medical team are amazing and leave no stone unturned in making sure they check for anything and everything just to be on the safe side. So he has had various tests done this week including an MRI of his brain, an EEG and a lumbar puncture to make sure that nothing else is causing him to sleep so much.

He is still not eating anything and the only calories he has are through his tube feeds. Since the glandular fever he has not even sipped water from his beaker. His mobility is also badly affected. He has been bedridden for weeks and his muscles are very weak and his strength is limited.

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We’re hoping that home visits and eventually just being home will help us make progress with his eating and movement.

We are so close to going and and just need him to remain well enough for this to happen.
Being discharged is a gradual process which involves day leave, night leave and weekend leave.  We are on our third attempt of day leave at the moment.

Just a brief mention of our other little angel, Gaurav’s sister Kiran.  She has been truly incredible over the last couple of months, which have been so confusing and frightening for her. She adapted really well to being cared for by other family members and spending lots of time getting spoilt by her grandparents. As soon as Gaurav’s white cell count was steady she was allowed in to see him. Gaurav had a really good cry to her the first time he saw her.

kiran gaurav and dadddy

I know that we keep saying it, but we do appreciate all the support and help we have received from friends and family throughout this time, when we haven’t been able really to communicate as much as we might have liked about the way things were going.  A huge thank you as well of course to all the staff at BCH – they have been marvellous.

We’d also like to end on a positive note: Gaurav’s Birmingham Children’s Hospital pal, Rhiane, who has been the focus of a lot of recent bone marrow donor appeals, here and in Canada, is in remission! Fantastic news for her and her family.  We know just how good it feels to have your child back home with their family.  Every good wish and prayer for her continued improvement.

 

One Hundred Days of Solitude

Sorry everyone for not posting before but it has been a busy and tense time.  You may know that Gaurav’s chemotherapy had to be delayed as he picked up an infection just two days before it was due to start.  Happily though, the intravenous antibiotics did their work and his chemo was just one day later than planned.  This happened on Thursday 12 December for one week and, as we had been warned, made him quite sick and sore but no worse than we expected.

Last Thursday, 19 December, his bone marrow transplant took place.

Gaurav in hospital after treatment

This involved a ninety minute infusion of the donor’s bone marrow (the longest hour and a half of my life).  The transplant team were with us throughout the process, monitoring Gaurav to make sure there were no severe reactions, which thankfully there were not.  The transplant went smoothly and there were no complications, although you can see from his picture that he is quite poorly but we knew this would happen, largely due to the effects of chemotherapy and the fact that he has no immune system.

We now wait and hope that in the next two to three weeks the donor cells engraft in Gaurav’s body and his blood count starts to rise.  Until that happens he will be in strict isolation in Birmingham Children’s Hospital to ensure no infection reaches him while his immune system is completely suppressed.

He is of course receiving a cocktail of drugs to prevent his body rejecting the new cells, as well as a constant infusion of pain relief to keep him comfortable and intravenous nutrition as he cannot eat or drink anything at this time.  He is our brave little soldier and we are so proud of him.

Gaurav after transplant

Gurprit is with him almost all of the time, although I am going to the hospital as often as possible to see him and give her a break from time to time.  Words cannot express how much I love and admire her bravery too.

Although it is hard, we make sure that Gaurav only sees our normal happy faces, to give him reassurance that we are with him and everything is going to be ok, even though it is very strange and horrid for him just now.

We have to stay strong and positive for Kiran too – she is only four and cannot speak to her little brother except through an intercom and can only see him through a glass door.  It is hard for a little girl to understand why she isn’t allowed to go into her brother’s room but we have explained that he is just too poorly to play for now and must hope that she understands.

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She loves her baby brother so much and has been through such a lot with him – we can’t wait until they can be together again.

The next 100 days are crucial in seeing if the transplant has been successful and all we can do is wait and pray.

Gurprit and I want to send special thanks to our wonderful anonymous donor who has given us just the best Christmas present we could hope for.  Not only that, but with incredible generosity, donated their bone marrow the old fashioned way – from their bone under anaesthetic, rather than from their blood, which is the more common method now. And this very kind soul agreed to have the procedure done a day later than originally planned, due to the delay caused by Gaurav’s infection, so that he could have the bone marrow fresh rather than frozen.

May God bless this person forever for the kindness and generosity that they have shown to our family.  Thanks of course and again to all of you who have shown us such support through this very difficult and trying time.  You have helped us remain positive and that positive energy is reflecting on Gaurav while we are around him.

On Christmas Day I will take Kiran to Birmingham Children’s Hospital so that we can spend some time with Gaurav and Gurprit.

rhiane getting ready for christmas

We are delighted to hear that (much as we love to see her!) Rhiane has got her Christmas wish and will be spending Christmas at home with her family.  We are sending her lots of good wishes for a fantastic day and hoping that this time next year, our little family will all be at home together, celebrating Christmas in style.

God bless you all – we wish you a peaceful Christmas and everything that you want for the New Year.

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The Campaign goes on…

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Here is a picture of Gaurav with Rhiane, another child who desperately needs a bone marrow transplant.  

Gaurav was running a temperature and sick earlier this week, so we had to do the usual: take him into Birmingham Children’s Hospital for 48 hours on intravenous antibiotics.  As you can see, he was soon looking and behaving like the little boy we know but he had to stay in until this morning, just to make absolutely sure, particularly with the BIG day approaching.

We are so glad that he had a chance to meet Rhiane while he was there.  

Rhiane and her family are where we were earlier this year.  She is staying in Birmingham Children’s Hospital at the moment as she has a condition called Aggressive AML – another type of blood cancer and she urgently needs a bone marrow transplant – chemotherapy has not been successful for her.  Rhiane had her seventh birthday in hospital yesterday.  She is an only child of Indian and Mauritian parents, so her very particular ethnic mix makes finding a donor match that much more of a challenge.  

Here she is getting ready for Christmas, in hospital, writing her letter to Santa. Just like our Kiran, she loves that Minnie Mouse!

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We have been so lucky to find a match for Gaurav and we want to carry on campaigning so that matches can be found – quickly – for other children, like Rhiane.

The campaign has been phenomenal so far – we think that at least 3,000 new Asian donors have registered since we began.  Four hundred people registered just last weekend in Slough and there are events being planned carrying on through next year – we’re even venturing North of the Border to Glasgow in January!

I have to be honest though and say that Gurprit and I are feeling steadily more tense, as the date of Gaurav’s hospital admission for the transplant draws ever closer.  He will go in on Monday and we have spent the time since my last post on several visits to hospital and meetings with specialist staff explaining to us exactly what is likely to happen.  

Of course, the chemotherapy and related treatment is designed to help Gaurav get better but the fact is, it will be horrible as we are going through it.  Let me tell you a bit about where we are now, and where the journey will take us over the next few weeks and months.

I think I mentioned in the last post that Gaurav had his ‘central line’ fitted – this is in his chest and has three tubes hanging out of it.  He coped extremely well with the insertion of the line and it has already been working for him as several blood samples have been taken.  You can imagine though that keeping an active two year old away from medical equipment in his body isn’t easy!  Gurprit has him in a vest all the time, to try to stop him touching the line.  

He has been his usual playful self, which reassures both of us and, as Gurprit says, if he is still smiling, then so are we!

He has had heart echo and ECG tests as well as a kidney function test.  These are all to calculate precisely the chemotherapy dosage and to give a base line reference which can then be monitored and tested after the chemotherapy to see if they have been affected.

On Monday past, we were at hospital again for a dental check and an appointment with our consultant.

Why a dental check? Because our mouths and throats are both delicate areas and also very prone to infection so the team at the hospital need to find any dental problems and address them before his transplant takes place to reduce that risk as far as is possible.

This is all amazing to me.  Not only are there so many issues to address – we all assume that ‘chemo’ means a drug (albeit a very toxic one) being administered – we have no idea of all the things that go on around it, before, during and after the treatment, but also, that there is so much knowledge and means to help with all the problems that might arise.

Gaurav starts one week of chemotherapy next Wednesday, all being well.  This will completely suppress his immune system so that when new cells are put in to his body on T-day ( his transplant operation) 18 December, his body will not fight them.  This is of course very scary as he will not have the resources to combat any infection during this time.  He will be in an isolation room during this time and for up to eight weeks after the transplant.  Gurprit will be staying with him throughout and I am lost in admiration for her courage in facing this.  

Kiran and I will visit and while I will be allowed to go into the room, Kiran has to stay outside, see him through glass and talk to him via an intercom, again to reduce the risk of infection as much as possible.  Confusing for her and scary for all of us.

You will I hope understand that we are spending as much time as we can in these last few days before the hospital stay starts as a family, doing normal family things while we have the opportunity.  Our little family will be apart for a while and we don’t know how long it will be before it gets back to the usual routine.

We do plan to keep the blog going throughout the journey, but please forgive us if we don’t post for a while or as often – it is all new to us too and we have to see how things go.

But for now, Gaurav is his usual mischievous self – up to no good, as you can see!

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I want to take this opportunity to say thanks again to everyone who has joined and helped the campaign – the awareness we have achieved will hopefully help others, like Rhiane.

If you haven’t already, please register – there are still so many waiting anxiously for donor matches.  Give hope, give life, give a future.

Useful links:

www.anthonynolan.org 

www.deletebloodcancer.org.uk

www.jaskomalfoundation.org

www.leukaemiacare.org.uk

Wow! Again

I am proud to say that the event at Soho Road yesterday added another 809 new Asian donors to the register – that’s about 2,500 in two weeks.  I was there with the wonderful Foji Gill, who organised the whole thing, as well as 20 other acts, who gave up their time to perform and encourage people to sign up with Delete Blood Cancer.

Gurprit and I have been running around all week – most importantly, organising things at the hospital and at home for when Gaurav goes into Birmingham Children’s Hospital on 11 December to start his pre-transplant treatment.  Gurprit will stay in the hospital with him, and he is likely to be there until at least the end of January, while I’ll be entertaining Kiran at home.

We also of course gave many interviews, sharing the great news that Gaurav had found his perfect match and, as importantly, reminding everyone that the campaign goes on so that no-one else has to go through what we did to find a donor for Gaurav.  You may have seen on Facebook that a little girl called Rhianes is urgently seeking a donor, so hopefully all the new people on the register will make finding someone for her possible much more quickly!

A million thanks again to everyone who has and is turning out to help.

Have a look at the West Midlands Police appeal – it is great!

http://www.youtube.com/watch?v=K6oeuk-L9yI&feature=youtu.be

I’d just like to mention the events that are coming up, so you know what is planned.  I hope to get along to some of them.

Today, Kul Mahay is organising an event in Derby, between 10am and 3 pm at Singh Sabha Gurdwara in Princes Street and there is another next Saturday at the Madeley Centre – please go to his Facebook page for more details.

If you are further south, there are two events, organised jointly by Jaskomal Foundation and Delete Blood Cancer, in Slough on Sunday 1 December: one is at Ramgharia Sikh Gurdwara, Woodland Avenue Slough and the other at Sri Guru Singh Sabha Gurdwara, Sheehy Way Slough and both are between 10 am and 3 pm.

Rik Basra has a couple of events planned as well – please go to his Facebook page for details.

Apologies if I have missed anyone or anything out – my head is in a bit of a whirl at the moment!

We will continue this blog through the rest of Gaurav’s journey but please understand if we are quiet on FB and Twitter in the next couple of weeks.  We want to keep in touch with everyone but we need some time as a family, before Gaurav and Gurprit go to hospital.

Thanks again for all the wonderful support.  Christmas has come very early this year!

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A bright light at the end of a long tunnel

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Sleeping beauties! It’s tiring being a little boy and even more tiring being his Dad!

Gurprit and I were at Birmingham Children’s Hospital with Gaurav on Monday and we have been given the best news that we could have hoped for.

A perfect match has been found for our little boy and he will be receiving his bone marrow transplant soon.  It is of course absolutely brilliant but to be honest, I don’t think it has sunk in fully to either of us yet and of course, Gaurav doesn’t understand at all.

We have spent the time since we found out preparing for Gaurav’s hospital stay and telling our closest family and friends but I wanted to share the news with all of you in the Team Gaurav community.  You have been so supportive and helpful and we are so thankful that we have met, virtually or in reality, so many of you.

Of course, the donor match is not the end of our story by any means.  It is the first step on a long and sometimes, I am sure, painful journey for Gaurav and for us.  We want to record and share with you all the steps on that journey, which starts at the beginning of December when Gaurav goes into hospital, probably with Gurprit, and preparations begin for the transplant operation.

He will have to undergo chemotherapy, which is debilitating enough for an adult but which is necessary prior to his transplant surgery and of course we have to be absolutely sure that he is free of any risk of infection.

He will most probably remain in hospital until some time in February and then we will have to remain vigilant and protect him from exposure to infection through contact with other people, so please do not think that the donor match is a magic wand which will make him better over night.

We are also determined to keep campaigning for Asian donors to join the National Bone Marrow Register.  We don’t want another family to go through the months of waiting and hoping to find a match because there aren’t enough people of British Asian ethnicity on the register.  It would be easy to say, ‘we’ve found a match for our boy now’ and walk away but we cannot and will not do that.  People have rallied around Gaurav and Gurprit and me.  We will return that support and help all we can to keep awareness high.

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Thirteen hundred British Asian people signed up last weekend at events in Derby and Southall, thanks to the campaign and to wonderful people like Amrit Cheema at the BBC, who succeeded in getting our story onto national and local BBC television and radio stations, from BBC Breakfast to Midlands Today, Radio 2  and 4, 5Live and 6, BBC Asian Network, BBC News online as well as BBC Radio West Midlands, Stoke and London.  Here is the link if you would like to hear and see more.

http://www.bbc.co.uk/news/uk-24977364

and the link for my interview on the news channel can be downloaded here: http://we.tl/bO0gZMEWOf

The story was picked up and ran in the Telegraph http://www.telegraph.co.uk/health/healthnews/10455542/Two-year-old-inspires-1200-per-cent-increase-in-bone-marrow-donors.html

We were international at the weekend with a donor event in Canada.  Three hundred and five people registered so taking all last weekend’s events together, that is a whopping 1665 new registrations in two days!

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A busy Sunday at Malton Sikh Temple in Mississauga, Ontario.  Thanks onematch and Canadian Blood Services!

Next weekend there is another event in Handsworth – I’ll post more details later in the week.  And there are plans for a Scottish donor event to coincide with Burns Night in January next year, so the campaign rolls on.

We have so many people to thank, not least the Jaskomal Foundation, Delete Blood Cancer and Anthony Nolan as well as many, many individuals who we did not even know three months ago but who have become like family to us now.  I can’t name them all here but we and they know who they are and that we are grateful.

Please forgive me if I don’t post quite as often in the coming weeks – we are preparing for hospital and adjusting to the immense news but I will keep everyone informed of the milestones along the way.

Here is a link to today’s BBC interview – Amrit Cheema is an absolute hero for making this possible! http://www.bbc.co.uk/news/uk-25033732?post_id=100005411730171_181328238724233#_=_

I will post again tomorrow with details of all the planned events – Gaurav has his match, but we need to keep campaigning so no other family has to wait for a donor.

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Southall Event – 17 November

Just a quick post to give everyone details for the event next weekend in Southall but first an enormous WOW! to the 343 new donors who signed up at the Rik Basra event yesterday – it was amazing (especially Mr Singh’s pizzas!)

Next Sunday (17 November) I will be at Sri Guru Singh Sabha Gurdwara, Havelock Road, Southall between 10 am and 4 pm with Delete Blood Cancer (www.deletebloodcancer.org.uk) and Jaskomal Foundation (www.jaskomalfoundation.org) to explain about registering and hopefully sign up some more donors.  

Thanks so much guys for all your efforts on our behalf.

The Light of Diwali is shining across the world

What a wonderful week it has been for us in our campaign to find a bone marrow match for Gaurav. Fourteen and a half thousand people from the UK to Australia have viewed this blog so far.

Let me start on Diwali itself, last Saturday.  Our friend Rupinder Kaur organised an enormously successful charity ball in Wolverhampton to raise funds for and awareness of the Unique Home for Girls in the Punjab in India.  As parents, she and her husband Harinder Singh, were moved by Gaurav’s story and invited me and the good people from Delete Blood Cancer (www.deletebloodcancer.org.uk) to attend the event.  I spoke about Gaurav’s journey and 154 new bone marrow donors signed up on the night.  This is amazing!  

Gurprit and I say thank you over and over again to all the people who have helped us, but words can’t really express how blessed we feel to have such marvellous support, not just for Gaurav, but for all of us.

On Sunday night our interview went out on the BBC Asian Network 

http://www.bbc.co.uk/programmes/p01kstn7 

Ruchi Tandon, who interviewed us was so sympathetic and understanding – I think she produced a great piece of radio.  We were also on the Nihal Show on the Asian Network and are delighted that Nihal will be coming to the Southall event on November 17 to register, even though it is his son’s birthday that day.  Thanks again Nihal for all your support.

Since then things have gone into overdrive: we have been to several events, been interviewed by other radio stations and geared up for Rik Basra’s event for Gaurav tomorrow in Handsworth.  We will be at the Nishkam Centre, 6 Soho Road, Handsworth between 10 am and 4 pm to sign up donors – please come along if you are in the area – it only takes a few minutes to save someone’s life.

Here is the Punjabi poster which Harinder, Raj Singh Kalsi and his father, Manpreet Billan, Amo Hayer, Ballie Kaur and Bal Singh Randhawa put together for us to use tomorrow and going forward at other events in the Asian community.  Hindi, Gujarati and Urdu versions are also being prepared.

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Next weekend, we are looking forward to the big Southall event and again, thanks are due to Rupinder and to Wendy Mann of the Jaskomal Foundation (www.jaskomalfoundation.org) for sorting out the logistics and to Delete Blood Cancer for providing all the technical support.  

We are, as we said in an earlier post, global now!  My cousin Colin Dhillon has organised a donor event in Canada for Gaurav

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This is so significant because Canada has the largest Sikh population outside of India! So, if you find yourself in or around Mississauga next Saturday, do go along.

I will post early next week with all the details of the Southall event, which are in the process of being finalised.

Gaurav continues to keep well, though of course we have to be especially careful, particularly at this time of year and with a four year old in the house as well.  Any coughs or colds are very very serious for him as they result in a hospital stay and intravenous antibiotics, which is not at all a pleasant experience but for now, he is fine.  Still loving his Micky Mouse DVDs and jumping around with his sister.

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I’m trying to fit in training for the London Marathon next year, so it is busy, busy, busy.

If I’ve forgotten to thank anyone personally, please know how much we appreciate all your support.

What a week it has been!

Hello all.  Just now catching our breath from the whirlwind of activity in the past seven days!

Team Gaurav (below) completed the Birmingham Half Marathon last Sunday in very respectable times.

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I managed just under two hours (I hour, 58 minutes and 39 seconds to be precise!) and man, was I ready for an ice bath at the end of that.  Although my fundraising target was £2,000, already people’s generosity has pushed that to £4,647 which, with gift aid, means that the amount raised so far is nearly £5,500 – thanks so much guys.  I’m hoping to get to £6,000 by the end of the London Marathon in April to help continue the valuable work of charities involved in bone marrow donation.

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My daughter Kiran and nephew Arjun, cheering me on.  My brother Kully, Arjun’s dad, was a member of Team Gaurav

Gaurav wasn’t able to be there as we are being very careful about exposing him to possible new infection, but he was very happy at home playing his favourite game of climbing on the furniture while Gurprit tries to keep him in order as mummies so often have to do.

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Later in the day Gurprit and I made our way to the BBC studios in Birmingham to be interviewed on the BBC Asian Network’s Dipps Bhamrah Show.  Wendy Mann from the Jaskomal Foundation was also interviewed by telephone and we were able to tell the story of why Asian bone marrow donors are so desperately needed and to answer listeners questions.

On Monday, I travelled down to Wembley to appear on Harjap Bhangal’s MATV show, alongside Bhaveshree Chandegra from Anthony Nolan and Wendy Mann and Joban Sher-gill from the Jaskomal Foundation.  It was also lovely to meet Jaskomal’s mother and Linsay Given Black.  We have all emailed, tweeted and spoken on the telephone but it is always good to meet face to face.  

Harjap very kindly gave us the whole hour of his show that night to talk about Gaurav, the campaign and the need for Asian donors and it was so useful to hear from Joban and Wendy about the actual process of donating as they have both done it and so could explode some of the myths that wrongly suggest that it is difficult and very painful.  We were able to give details of the donor registration events on Saturday and Sunday and also to show the film that we have put together about the campaign.

http://youtu.be/ti6iDjsQJiI

On Tuesday a great friend of mine arranged a huge electronic billboard with details of the campaign to be shown in Leeds, Manchester, Birmingham and London, reminding people of the events at the weekend – this was a marvellous boost to our awareness raising – thank you som much.

We also heard on Tuesday about new developments in bone marrow donation:

http://www.bbc.co.uk/news/health-24609025 which we are discussing with Gaurav’s doctors this week.

I was interviewed on Akaal, a Punjab TV channel in Birmingham on Friday, thanks to the help and support of Kharron-Deep Singh Phagura, a partner in Aspect Law in Birmingham, who has been so kind to us, as have so many other people.

On Saturday and Sunday the Jaskomal Foundation and Anthony Nolan held events in Smethwick and Trafalgar Square in London to register new donors and together they have added another 350 or so Asian donors to the register – fantastic news for all the families seeking a bone marrow match.

And finally, we were all delighted to hear Hardeep Singh Kohli play “You’ll Never Walk Alone” for us on Sunday morning on BBC Radio 2.  As you may have gathered, the Bains are big Liverpool FC fans, so this song means a lot to us and also really sums up how we feel since starting this campaign and encountering so much fantastic help and support.  We don’t feel alone – we have hope in our hearts.

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Links:

www.jaskomalfoundation.org

www.anthonynolan.org

www.deletebloodcancer.org.uk

http://www.youtube.com/watch?v=VFJZsJHIwgw&feature=youtu.be

http://m.youtube.com/watch?v=ti6iDjsQJiI&sns=fb&desktop_uri=%2Fwatch%3Fv%3Dti6iDjsQJiI%26sns%3Dfb

 

Gaurav goes global!

Sorry all for taking so long to put up a new post but so much has been happening!  Gaurav was in hospital because his tonsilitis needed immediate IV antibiotic treatment.  Happily he is home again, though he was a bit low when he first got back

As the days went on though, he got brighter and is now back to himself – going to bed late, waking up late and watching his favourite Mickey Mouse cartoons!

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We are now just praying that he doesn’t pick up another infection before his transplant because it brings him down so much.

I have been busy training hard for the Birmingham Half Marathon this Sunday (20th October) to raise funds and awareness for the bone marrow campaign.  If you’re in the area on Sunday, please do come and cheer me and my brother on.  Our start time is 10.30 am and we should get round in about two hours.

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This is the first marathon I’ve ever done, I play football (and a big shout out to my team Mahal FC which won best Asian team at the Asian Football Awards in London last week) but training for a marathon is quite different.  I’m going on to do the London Marathon next year, but more of that later!

I was at the Asian Football Awards and must say a huge thank you to Baljit Rihal, the founder of the awards, who gave us a page in his programme for Gaurav’s campaign.

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Spreading the word….

After the marathon on Sunday, Gurprit and I will be interviewed on Dipps Bhamrah Punjab Showa, with Wendy Mann from the Jaskomal Foundation contributing on donating, as she has done it twice, and the work of the Foundation.  We should be on around 7.10 pm so have a listen.  Or listen again at www.bbc.co.uk/asiannetwork

Then on Monday, I will be joining Wendy, Joban Sher-gill (Jaskomal’s brother) and Bhaveshree Chandegra, the Asian Campaign Recruitment Manager at Anthony Nolan on Harjap Bhangal’s television show on MATV to talk about the campaign.  Harjap has very kindly given us the whole hour of his programme (7-8 pm) to talk about what we are doing, the need to sign more Asian donors up to the Bone Marrow Register and to tell people about the events we have planned.  It will be a busy few days!

Signing up Donors

After all the excitement of the broadcasting, our focus will be on getting ready for the two donor events next weekend.

Saturday 26th October 3-8 pm Guru Nanak Gurdwara, 130 High Street Smethwick B66 3AP

Sunday 27th October 2 7 pm Trafalgar Square, London

Please come along and find out about donating – it is very simple and quick! Or contact www.anthonynolan.org

If you can’t attend either of these events, please sign up online at www.deletebloodcancer.org.uk – they will send you out a kit. You simply need to swab the inside of your cheek and the cells will be sent off for analysis.  Your details will be listed anonymously on the Bone Marrow Register for potential matching with anyone who needs a donation.  It only takes five minutes to save a life! 

We are planning more events later in the year, but I’ll tell you about them nearer the time.

Thanks to Delete Blood Cancer, we can also take donations from all you marvellous people from outside the UK who have contacted us.  In Canada there are two organisations: OneMatch which is national and HEMA in Quebec.  They have about 340,000 people on their database at the moment which is one per cent of the population.  More information and online registration is here 

http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/Join_Today?OpenDocument&CloseMenu

Delete Blood Cancer UK is part of a family of organisations worldwide, so if you are reading this from outside the UK, please contact them, either by email engage@deletebloodcancer.org.uk or through their website www.deletebloodcancer.org.uk and they can direct you to the relevant national organisation.. Their US ‘sister’ is working with us already, which is marvellous!

Thank you again to all the people who have been in touch with messages of support and offers of help.  We are so touched and so thankful.

I’ll post again soon with updates.  Please do leave a message though if you have specific questions or comments.

The Story So Far ….

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Fun in the garden!

In all the whirl of activity in the last week, I have kind of lost sight of the rest of Gaurav’s story since my first post, when I got to the point of his diagnosis with the rare condition Monosomy 7.

So with a quick pause to thank again all the wonderful people who have viewed this blog (almost 8,000 now) and got in touch to offer everything from their good wishes and prayers to publicity platforms for us to actual bone marrow donations (from as far afield as Canada and India) here goes with the story until now.

After Gaurav’s diagnosis in  June this year, we had our first appointment with the Bone Marrow Transplant Team at Birmingham Children’s Hospital. We discussed his diagnosis once again and the team explained why having a transplant gives him the best chance of survival.  We talked about the procedure in more detail: exactly how it is done and the risks involved.  Gurprit, my wife and of course Gaurav’s mother, our daughter Kiran (who is four) and I all had blood samples taken for tissue typing which indicates whether or not we are matches for Gaurav and so able to donate to him.

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Kiran did a picture at school of her family

We, in common with most people, judging from the reactions we have had, believed that donating bone marrow is a very intrusive and possibly painful procedure.  That may have been the case in the early days but technology has moved on: donating bone marrow now is no more uncomfortable than donating blood, and takes about the same amount of time.  If you are not sure about donating, please be assured that it is not a painful and drawn out process, so please consider registering as a donor.  There is a one in four chance that a family member will provide a match, so the statistics tell you how important it is to get many more non-related donors on to the register.

Monday of this week was the day that we found out whether or not any of us are a match for Gaurav.  Unfortunately, we are not, so the race is on to find him a donor from the general population.  Because of the particular genetic make-up of Asian ethnicities, it is quite challenging to find a match, particularly as at the moment, only about 4 per cent of donors on the register are Asian.  His doctors want to be in a position to perform his transplant by Christmas, so time really is of the essence.

Although my boy has been taking preventative antibiotics since March and he has been well since his last serious infection in May, his temperature spiked again on Monday. On the advice of his specialist, we took him into BCH.  He was checked over and it soon became apparent that he had tonsillitis.  He started intravenous antibiotics immediately because his condition, as we said in the first post, means that he cannot fight infection on his own.

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Gaurav in hospital this week with tonsilitis

We have a donor event in Birmingham on 26 October (Saturday) and another on 27 October in Trafalgar Square in London.  The Jaskomal Foundation held an event for us last weekend in Bedford and gained 35 new donors, which is wonderful.

If you would like more information on the events or how to donate, please leave a message below and we will respond to specific requests with the relevant details.

Please help us to give hope a chance and thank you again for all the help and support we have received so far.

Links: http://www.jaskomalfoundation.org/

http://www.anthonynolan.org/

http://www.nhsbt.nhs.uk/bonemarrow/

http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/leukaemia-key-facts/

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