History

Journal History

Wednesday, July 2, 2003 10:07 AM CDT

Poem for my little brother JAMES

Mum, Dad and I, wonder why
God took you to rest.
But we all know that He only takes the very best.

Those lovely brown eyes,
and your little white lies
We will never forget.
Those strong footballers legs
And I remember your face full of pegs!

We were in the garden one-day,
Where the sun sat and lay.
I knew at the end, I had to pray
For you to stay with me
But we all knew that it would never be.

People prayed for just one miracle to keep you here with us,
But that miracle did not take place as it turned to dust.

My room is empty and I am all by myself,
But I thank God for my continued good health.

Your room lays the same,
Just like our pain,
For it is not a game,
Now without you, it will never be the same.
I hope you are happy now where you are
But don’t forget, we will always love you.

All my friends have brothers your age,
But I can say, that I have a brother in my heart
So wherever I go, we will never part

Love from your sister and a great big kiss

Christine

Thursday, December 26, 2002 at 04:24 AM (CST)

JAMES’ CHRISTMAS IN HEAVEN

I see the countless Christmas trees around the world below;
with tiny lights like heaven's stars, reflecting on the snow.
The sight is so spectacular; please wipe away that tear;
for I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,
but the sounds of music can't compare, with the Christmas choir up here.
For I have no words to tell you, the joy their voices bring,
for it is beyond description, to hear an angel sing.

I know how much you miss me, I see the pain you hold,
but I am not so far away, I'm still inside your heart.
So be happy for me, you know I hold you near,
and be glad I'm spending Christmas with Jesus Christ this year.

I'm sending you a special gift, from my heavenly home above.
I send you a memory of my undying love.
For after all "Love" is the gift more precious than pure gold,
It was always most important in the stories Jesus told.

So please love and help each other, as Our Father said to do.
For I cannot count the blessings, or the love, he has for you.
So have a Merry Christmas, and wipe away that tear;
for I am spending Christmas with Jesus Christ this year.

I can't tell you of the splendor, or the peace here in this place.
Can you just imagine Christmas with our Savior, face to face?
I'll ask Him to lift your spirit, as I tell Him of your love,
So pray for one another as you lift your eyes above.

Let your heart be joyful, and let your spirit sing;
For I am spending Christmas in Heaven with the King.

*****************************************************************************************************************

Sue and I are determined with everyone’s help to continue the journey we started by helping other children struck by the same condition that James suffered from. Our main aim is to find a cure for this debilitating illness.

So with your help there is on sale an enlarged oval photograph of James printed on card 7 x 5 with togetherness verse and framed in a Gold finish. The price is Ł10.00 plus Ł3.50 postage.
You can order via e-mail to: (rshaddad@yahoo.co.uk)
Please leave your details and contact number and we will confirm your order.

Please make cheques payable to “THE JAMES HADDAD APPEAL FUND” and send it to: St. Mary’s Church, 70 Wellesley Road, Croydon, Surrey, CR0 2AR, U.K.

Those wishing to make a donation to such a worthwhile cause can forward payments to the James Haddad appeal fund; NatWest Bank; account number: 79620663 Sort code 60-60-40.

We are committed to using every penny raised by the appeal to treat other innocent children suffering from a similar illness and other charitable organisations associated with James’ condition.

Saturday, December 07, 2002 at 02:17 PM (CST)

How does one cope with the death of their child at any time of the year, our son died on the 26th October 2001, and we are approaching the time where people are preparing for the festivities of Christmas and the New Year.

Sue, Christine and myself will be looking back and reliving the events surrounding December 2001. It was, of course, a most difficult time for our entire family.

December will be the first anniversary of James’ debilitating illness, realising that Christmas is going to be very difficult time for us amidst all the festivities, laughter that surround us. How can we find ways to honour James’ memory during this difficult time?

Christmas will never be the same as it was before James becoming an angel. However different it may be, the most important thing for us is to spend it as a family. We won’t put a lot of emphasis into Christmas festivities or gifts; God, through James has given us the strength and clarity of thought to try to do what our hearts tells us to, as much as possible anyway. James gave us this remarkable inner strength to keep going when most of us would simply fracture into many useless pieces and scatter in the wind.

Obviously, life for us had changed from top to bottom. What seemed important prior to our loss just paled into insignificance. All that you took for granted now lodged so heavily in our mind morning to night. As devout Catholics, our faith is the primary source of inspiration and hope for the future, as God has planned it for us.

Sue and I are determined with everyone’s help to continue the journey we started by helping other children struck by the same condition that James suffered from. Our main aim is to find a cure for this debilitating illness.

So with your help there is on sale an enlarged oval photograph of James printed on card 7 x 5 with togetherness verse and framed in a Gold finish. The price is Ł10.00 plus Ł3.50 postage.
You can order via e-mail to: (rshaddad@yahoo.co.uk)
Please leave your details and contact number and we will confirm your order.

Please make cheques payable to “THE JAMES HADDAD APPEAL FUND” and send it to: St. Mary’s Church, 70 Wellesley Road, Croydon, Surrey, CR0 2AR, U.K.

Those wishing to make a donation to such a worthwhile cause can forward payments to the James Haddad appeal fund; NatWest Bank; account number: 79620663
Sort code 60-60-40.

We are committed to using every penny raised by the appeal to treat other innocent children suffering from a similar illness and other charitable organisations associated with James’ condition.

Many thanks and God bless you all

Thursday, December 05, 2002 at 01:52 PM (CST)

How does one cope with the death of their child at any time of the year, our son died on the 26th October 2001, and we are approaching the time where people are preparing for the festivities of Christmas and the New Year.

Sue, Christine and myself will be looking back and reliving the events surrounding December 2001. It was, of course, a most difficult time for our entire family.

December will be the first anniversary of James’ debilitating illness, realising that Christmas is going to be very difficult time for us amidst all the festivities, laughter that surround us. How can we find ways to honour James’ memory during this difficult time?

Christmas will never be the same as it was before James becoming an angel. However different it may be, the most important thing for us is to spend it as a family. We won’t put a lot of emphasis into Christmas festivities or gifts; God, through James has given us the strength and clarity of thought to try to do what our hearts tells us to, as much as possible anyway. James gave us this remarkable inner strength to keep going when most of us would simply fracture into many useless pieces and scatter in the wind.

Obviously, life for us had changed from top to bottom. What seemed important prior to our loss just paled into insignificance. All that you took for granted now lodged so heavily in our mind morning to night. As devout Catholics, our faith is the primary source of inspiration and hope for the future, as God has planned it for us.

Sue and I are determined with everyone’s help to continue the journey we started by helping other children struck by the same condition that James suffered from. Our main aim is to find a cure for this debilitating illness.

So with your help there is on sale an enlarged oval photograph of James printed on card 7 x 5 with togetherness verse and framed in a Gold finish. The price is Ł10.00 plus Ł3.50 postage. You can see the photo frame if you click on the photo link.
You can order either via e-mail (rshaddad@yahoo.co.uk) or
Phone Robert direct on +44 (0) 20 84051860 or mobile 07956 441 776
Please make cheques payable to “THE JAMES HADDAD APPEAL FUND” and send it to: St. Mary’s Church, 70 Wellesley Road, Croydon, Surrey, CR0 2AR, U.K.

Those wishing to make a donation to such a worthwhile cause can forward payments to the James Haddad appeal fund; NatWest Bank; account number: 79620663
Sort code 60-60-40.

We are committed to using every penny raised by the appeal to treat other innocent children suffering from a similar illness and other charitable organisations associated with James’ condition.

Many thanks and God bless you all

Saturday, November 16, 2002 at 03:09 AM (CST)

Many of our readers will have read about the funeral held on the 1st November of our nine-year-old son James who lost his ten-month battle with a diffused Intrinsic Pontine Glioma.
It was a significant funeral ceremony attended by upwards of 650 people, not to mention James entire year from St Mary’s Junior School.
Sue and I are very eager to convey our deepest gratitude to so many people who managed to contribute to that sad but memorable day. Had the organisation and commitment of all those key individuals not been fine tuned to suit the dignity of the event, the day would not have gone so smoothly. At our time of greatest need, to lay to rest our only son, it was crucial to be blessed with the help and support of friends who realised the importance of every bit of the contribution.
Sue & I, at times, thought that we could not make through the service, but I had to remain composed and strong for the family, and for James. I was extremely touched by the warmth and depth the good Priests delivered the Funeral Mass. The words were very well chosen, and seemed to comfort us from start to finish. And to all those that sent the lovely floral tributes, our greatest thanks.
Aside from the Church ceremony, we were equally grateful to all those who arranged and supervised the funeral reception after James was laid to rest at Mitcham Road cemetery. As many may recall, it was a very rainy day, uncomfortable for all of us, all the more reason to end a rough day with something to eat and drink back at the Church. But the re-gathering was more than a chance to get warm with a bite to eat after a traumatic day. Many of them knew James and took the opportunity to eulogise in a way that did not make any body uncomfortable. On the contrary, Sue, Christine and I desperately need a brief respite from the depressing routine we had to follow those last few days. It was such a relief to eat and drink with people who had so many experiences with James they wished to share with the rest of us, some I was aware of, some surprisingly not. It was not inappropriate to smile now and then so soon after burying our son because our smiles were one of love and appreciation for the brief time we were allowed with him. People were reacting from their hearts, and we openly encouraged it. To all those who made that late afternoon possible, my family would like to reach out and thank you as profoundly as possible. It was the greatest respect they could have shown any parent in mourning.
In addition to the above, we shall like to mention that the James Haddad Appeal is still running strong and will continue its quest to raise funds for research, and research hopefully in the area of Brain Stem Tumour. As many cancers, even brain tumours, can be successfully treated and beaten, brain stem cancer remains one of the few illnesses that continues to beat our most gifted scientists, despite their best efforts. This is a research area that Sue and I are very passionate about, and we would like all those concerned to note, that we will continue to try to raise funds to enlighten peoples' understanding of this area of medicine, and we shall like to offer our fullest assistance to all those families who are, alas, going through the same nightmare we had to endure. These people MUST know that there are others out there who can say I’ve been there and know precisely what you are going through. Perhaps with this small comfort in mind, their hearts may be lifted slightly to help them cope a little better. The James Haddad Appeal will continue, therefore, not just to raise funds for this worthwhile cause, but to inform and educate people about Brain Stem Cancer and all its complications.
Recently, we were invited to the Croydon Champions tribute evening during which James was honoured by the Croydon Guardian, the Mayor and community of Croydon. Words fail us to begin to try and thank the people of Croydon for their generosity and compassion toward us.
Sue and I will take some time indeed to get over our loss. Some days undoubtedly, will be gentler than others, and we are aware that this process has a life all of its own. We will do our best to cope and to do our duty toward our community with the same dedication they have shown us. But in closing, perhaps our greatest thanks, taking into account the full ten month period, is the tremendous interest and support we had received, and continue to receive, from the Croydon Guardian. They followed our sad story from start to finish, and it is purely because of this local publication that my family's predicament was highlighted in the way it was. They helped us busy ourselves in the early months, giving us direction and purpose. Without that interaction we would certainly have lost our sanity long ago. They proved to us that people, in these awful times we live in, still have time to care, and in a way few would expect. People today simply don't expect help, even though they need it and crave for it. So when help does come and in great quantity, it can only do one thing and that is to celebrate being a humble individual.
No more, no less."

Wednesday, November 06, 2002 at 07:39 PM (CST)

Our thoughts and gratitude

Sue and I have many many times wondered what can ever be said to confront all those so many people that contributed to all efforts to reduce the pain and anguish my family has had to endure these last 10 months. But we would sit down and contemplate this problem; we were often left blank, not knowing how to begin.

We have now buried our dearest son James in circumstances not even remotely imagined. But reality hits you hard across the face and we are left having to cope somehow. It is this resilience within people that has contributed enormously to the reserve strength we have had to dig deep for in order to survive our nightmare. We are not the first family do have to have done this, and regrettably, not the last.

But human interaction of the degree we have seen, particularly in the closing three months of James's life, serves in itself to give parents the feeling of hope from the human killer, Cancer. There are many cancers that today can be tackled, and see us succeed. But cancer within children is particularly abhorrent to our senses and seems to go against our most basic expectation for children to out survive their parents. This is the normal way of the world. But these days, we can be accused of being too Utopian to expect our children to survive all the ugliness this world has to offer.

All things considered, Sue and I, and our daughter Christine, will live the rest of our lives learning how to come to terms with the loss of our James. The process of denial has now to end and a new period of RECONSTRUCTION OF OUR LIVES has to begin. It won't be easy and will see many expected and unexpected obstacles. We hope we are up to it. I feel we have no choice. What is the alternative?

Whilst we begin this long and arduous process of 'rebirth" if you like, we need, as part of this process, to acknowledge the utter magnificence of so many key individuals, without which, we would truly have totally disintegrated, leaving James at the mercy of fate's cruellest intentions.

In situations as ours, non-family members often prove the greatest strength, and it is their devotion to our cause that we would like to address. It is difficult knowing where to begin. Right from the start, back in January when James was diagnosed with the Diffuse Intrinsic Pontine Glioma, we were catapulted into an entirely new way of life. Whilst giving full credit to aspects of the State machinery that came into play to deal with James's cancer, his personal helpers, in our view, really worked out of their own skins. Their attention to James can't be seen as routine procedure. With each case different with each type of child, the response, actions and reactions very soon began to take a character all of its own.

Children are remarkably resilient in times of great distress, and James proved this to us in such a supreme. This perception is confirmed by James’s nurses who countless times commented on how strong and uncomplaining James was throughout his ordeal. His nurses could easily have carried themselves with indifference, since we hear so many times that a certain cold hearted numbness sets in with helpers dealing with sick children day in day out. This was most definitely not the case with our experience. On the contrary, Sue and I were absolutely amazed at how more and more James's nurses and helpers gave from deep within themselves. James was very instrumental in this phenomenon. James was a real character.

At school James wasn't an extraordinary child. He was simply one of the guys, not liked or disliked more than the boy next door. But over the last several months Sue and I were deeply, deeply touched at how supportive St Mary's Junior School proved to be. This has to be down to James's class teacher, other teachers, and, of course, the school Head, Mrs. Pendry, To all of you, please accept, on behalf of our family, our parents and extended family, our warmest sense of gratitude for the magnanimous support and example of human decency you have demonstrated for all to see. The philosophy and posture James's school decided to adopt is truly remarkable and a light for all to see. We shall never forget it and work hard to not let others forget it. We were particularly touched when the entire school paraded outside when James's funeral procession was routed by the school. To see all the children line the pavement, hands clasped in prayer, was, for us, one of the most tearful gestures we have witnessed to date, and it will haunt us for the rest of our lives.
To all the children of St Mary's Infant and Junior schools, God bless you and give you all long and pain-free lives. James would have been enormously proud.

But what about all those not professionally trained to give the assistance they did. They are certainly not the unsung heroes in all of this. Close friends were a pillar of support at the worst of times, and without them we could never have coped.

We recall so many outings made possible by so many individuals and companies that could so easily have said, 'Sorry we're too busy". But they didn't. They surprised, not only James and us, but possibly themselves. That's testimony to the phenomenon we were also living through. James's condition, though deeply tragic in itself, particularly for us, seems to have touched so many lives in a way that has left so many of them permanently changed, and we prefer to think, for the better in some idiosyncratic way. Many have told us they have become more spiritual, some have begun going to Church more often and liking it in a therapeutic way known best to themselves. Many, and we hope many, tend now to love and deal with their children in a way that acknowledges how short and precious life is without getting entangled with petty issues, likes and dislikes. Love and understand your children, and let them know it. Think of us, the Haddads without James, before you scold your child for the pettiest of things.

James's passing cannot be in vain. Yes, we still ask ourselves WHY, and why James? But who are we to question God's will. All we can do is move on and open our eyes to the greatness of people's love and friendship toward us.

We look forward to sharing private moments with you all in better times and will work very hard to reconstruct our lives. With your continued help, we will succeed. On that we have no doubt. Our love and devotion must now be centred on our daughter Christine, who has had to endure far more than any 15-year should bear. We have had to rest heavily on her support these last few months, failing at times to take full stock of how this nightmare was affecting her. Yet she never complained as she realised all the facts. A mature head on young shoulders. Our dearest Christine, please allow us to prove to know how much we acknowledged the magnificent dignity with which you have come through your own personal horror. We love you more than words can express. Though we mourn the loss of James, you are but another finger on our same hand.

Wednesday, October 30, 2002 at 03:20 PM (CST)

GOD CLAIMED HIS LATEST ANGEL

JAMES LEFT US ON SATURDAY 26TH OCTOBER AT 6:15 IN THE MORNING WHEN GOD CALLED HIM AND JOINED THE HEAVENS. HE IS WITH JESUS AND THE REST OF THE SAINTS AND THE ANGELS

WE ASKED JAMES TO PRAY FOR US AND HOPE TO JOIN HIM ONE DAY.

GONE FROM OUR HOME SO SWIFTLY AND WAS PLUCKED LIKE A FLOWER IN ITS BLOOM. HE HAS GONE TO SHINE WITH JESUS, IN HIS NEW BEAUTIFUL HOME.
GOD SAW IN HIM AN ANGEL AND DECIDED THAT HE IS TOO GOOD NOT TO STAY TO SUFFER ON EARTH

GOD BLESS YOU ALL

JAMES' FUNERAL WILL TAKE PLACE ON FRIDAY 1ST NOVEMBER WHICH COINSIDES WITH ALL SAINTS DAY AT 13:00 WHERE HIS BODY WILL BE TRANSFERED BY HORSE HURST TO CROYDON CEMETERY, MITCHAM ROAD.

HE IS NOW LYING IN THE CHAPEL OF REST AT ROWLAND BROTHERS FUNERAL DIRECTORS, WHITEHORSE ROAD, THORNTON HEATH.
ANYONE WISHES TO PAY THEIR RESPECT, THEY CAN VISIT THE CHAPEL WHICH IS OPEN TO THE PUBLIC FROM 8:00 AM TILL 8:00 PM, UNTIL FRIDAY MORNING.

Sunday, October 27, 2002 at 03:19 AM (CST)

Friday, October 04, 2002 at 11:47 AM (CDT)

Three paces forward and four backwards

It's now been nine months since we opened the first chapter on our nine year old James, who was diagnosed with a life threatening and extremely rare brain condition last Christmas.
After six weeks of radiotherapy and extensive post radiotherapy pioneering drug treatment, we catalogued the treatment options and NHS consultants told us in February that nothing more could be done.
We could not accept this so we refused any posture other than positive research to find a cure for James. Our efforts proved so constructive that James showed significant signs of improvement. The drug initially appeared to halt the tumour’s growth, offering us much hope and allowing James to return to a near normal childhood routine, albeit with a very strict dietary regime.
In recent months, James has shown a steady negative graph line, compounding our worst-case scenario. Our Catholic faith continues to be most important to us, in April we managed to take James to Lourdes and in May to Rome for an audience with his Holiness Pope John Paul II. We pray every day for a miracle through the hand of science and pioneering drugs.
But in mid August James eventually went full circle and actually began to recede back to the original symptoms that appeared last January, with the offending cells deteriorating the nervous system.
After so many emotional pleads for help from often indifferent NHS consultants, James was allowed pioneering drugs not normally prescribed in the UK. It was becoming increasingly likely that we may have to take James over to the US for hard-core, state of the art treatment. We could only do this by fund raising activity, which proved to engage all those people close to us, as well as perfect strangers touched by James's plight.
In recent weeks James has shown signs of even greater deterioration to the point where he can no longer talk, eat solid foods, swallow liquids and even his movements are severely limited. We became increasingly desperate to find further treatment and it appeared we would have to make the US trip immediately.
However and by sheer circumstance, one of our NHS consultants introduced us to a key Oncologist, over in the UK from Toronto, Canada. He agreed to treating James with the drugs previously only available in Boston, USA.
James has started this pioneering medical treatment and we are desperately hoping and praying it will improve his condition.
We are extremely conscious that so many of you have made huge efforts and shown remarkable generosity to support the appeal, and mere words cannot thank you enough. However, we felt we should inform everyone that treatment abroad has, at this time, been postponed, as our main concern now rests on the hope that this latest treatment is not too late, and that the disturbing symptoms hampering James are, somehow, a function of the equation that may lead to James's recovery, albeit slow and gradual.
Driven simply from pure integrity, we are passionately keen to use every penny raised to find a cure for James, but equally keen that if these funds were not destined for James's recovery, that they be used to treat other innocent children equally plighted with a similar illness and other charitable organisations associated with James’ condition. Nothing must be in vain and everything must demonstrate one's ability to feel for and help that perfect stranger. Humanity is still with us despite the madness around us.
Perhaps the fantastic efforts of the fundraisers should be allowed to take a well-earned break, pending this latest course of treatment. The focus on James will not abate as a result, but only serve as a 'time out' for us to hold our breath and wait and see.

Sunday, September 22, 2002 at 07:50 AM (CDT)

James’ Update

It is very hard for us to tell you that things have been going very down hill rapidly. As the days go by James’ condition worsens and our hearts sink even further. It is the worst pain any parent can go through watching helplessly their own child suffer. Our friends as usual have been brilliant, some pop in to give us support, some provide us with dinners and others come in to help entertain James. We are lucky to have them and we really wish them on all of you. They are a treasure to have.

James being James is strong and determined to get on with life no matter what. He is losing his ability to speak; he can only manage a few words. Although not managing to express himself through words he has managed to take on a new method of communicating through pointing to letters on a sheet of paper to alert us to what he wants to say. Always pointing to the happy smiley face when you ask him how he is, as usual never complains of anything not even the worst pain. Yet again he has done us proud. He is a blessing to us, which God wants to take away from us.

He is now completely paralysed down the right side and can hardly manage to chew or swallow any solids he even has difficulty in drinking water. James’ favourite thing at present is having baths filled with bubbles, which he enjoys 4 times a day.

The community nurses (Children's Hospital at Home) and doctors from both Mayday Hospital and the Royal Marsden Hospital have been great in their support towards James and us as a family.

The doctor at the Royal Marsden agreed to put James on a new trial combination drugs that we heard off in Boston, USA; but we don’t know if he can continue taking the drugs because of the difficulty in swallowing.

The only consolation we can say and thanking GOD, is that James is NOT in any serious pain although he is suffering from constipation and some side effects from the new drugs. But thanks for all the support of the nurses and Dr. Helen Underhill who is making sure that James is comfortable.

We as a family are trying to console each other and are one hand in making sure that we are near James every minute of the day attending to his needs and we pray every moment of the day that James does not suffer in any way when God calls for him.

We ask you all to keep us in your thoughts and prayers and would like to thank you for your support throughout.

Saturday, August 31, 2002 at 05:52 PM (CDT)

James’ update.

Although Make-A-Wish withdrew their offer to send James to swim with the dolphin, they offered him his second wish, which was the laptop with a printer, scanner, bundle of games and a digital camera. They also arranged for us all to have lunch at the Rain Forest Café in Leicester Square transported by a chauffer driven Limousine. Meanwhile Make-A-Wish volunteers were in the house preparing all of James’ presents, which he was delighted with especially the digital camera. We are very grateful to Make-a-wish for making it so special for him.

James’ current situation is not very good, he has lost complete mobility of his legs, he is now in a wheelchair, which has been provided to us by the Red Cross, it is very big for him and very hard to move about with. We are looking into replacing it to a smaller one that we can manage indoors. James’ eyesight is also not very good. His double vision was really restricting him from enjoying watching his favourite programmes and playing his games, but thanks to a mum of a little girl suffering with the same diagnosis, alerted us to the fact that a prism can be fitted on to the lenses to get rid of the double vision which the NHS doctors never mentioned to us. James’ glasses have been fitted with the prism now, which improve his vision.

His speech, movement of both arms and legs are slowing down. He is having difficulty passing urine and goes to the toilet between 10 – 20 times a day and up to 6 times at night. You can imagine how tiring this is for him as there is no toilet downstairs.

James is looking forward going to school next week, but we are not sure if he can manage it. Mrs. Pendry, James’ head teacher at School is very supportive and works with us very closely and will do anything to help James.

With all the above our hero has not for once complained or moaned about what is happening to him, he is still displaying his bravery and even stronger. We draw our strength from our beloved son who is showing us his courage more than ever before. He is a strong boy who just accepts what is thrown on to him and just keeps the lovely smile on his face and always says that he is fine and feeling very well. We are blessed with our darling son. We just wish we could hold him forever.

We call upon every parents our there, enjoy your children, cuddle them, cherish them and spend quality time with them. They are the most precious thing in the world and always be grateful for every day with them.

Thursday, August 15, 2002 at 05:32 AM (CDT)

Update on James’ condition

Today 14th August 02, James’ condition is deteriorating rapidly. He is seeing doubles at all times. We have tried to assist by making him wear an eye patch but he gets frustrated and takes it off. Sue and I are next to him all the time to try and ease his frustration in any possible way. We came back from the Royal Marsden hospital today and the specialist suggested to increase James’ Steroids dose.

Our dear friend Frank Fernando has yet again assisted with medical research and between us we come up with another kind of medication that the specialist prescribed yesterday. We have not yet given up and will fight with the beast till the end!!!
James is putting up with all the symptoms showing signs of frustration, he wants to lead a normal life forgetting that he is unable to do many things especially walking. We are trying to give him things to do while sitting down, as his balance is very bad.

We are still waiting some news from the United States for any possible treatment for James.

Make-a-wish foundation has withdrawn their offer of sending James to Florida to swim with the dolphins due to insurance issues. We are all gutted about it but our hands are tight and cannot do much about it. They have offered us James’ second wish, which is a laptop with many games on it.

We are trying to do things with James that he enjoys. On Tuesday we took James to Thorpe Park where he had so much fun but was unable to go onto many of the rides due to his balance and vision problems. James also enjoys fishing, which we are trying to fit in as well.

What our family is going through is just every parent’s nightmare, I therefore call upon you all with children to enjoy life and give your children the time they ask for and like I always said in my articles, live each day as it is your last day!!!!

Please keep James in your prayers and not to forget his sister Christine who is suffering with us!

Thursday, August 08, 2002 at 05:10 PM (CDT)

MRI Result

We are devestated from the result of the latest MRI scan.
According to the consultant at the Royal Marsden Hospital, The beast has returned with VENGEANCE. It is nearly the same size as it was in January. Unfortunately there isn't anything available here in the UK. But we are not giving up. We are continuing our investigation from the vast information on the internet around the world to see if there are any trials out there that can be considered for James. Although James is in good spirit, he is showing many signs like double vision, tilting of the head, wobbly feet and imbalance.
Make-A- Wish foundation have agreed to grant James his wish of swimming with the Dolphins but can only organise it for early September. We ask you all out there to pray that James is well enough to fulfill his wish and we also ask you to continue praying for a miracle cure!

Monday, July 22, 2002 at 01:18 PM (CDT)

THE BATTLE GOES ON

After the diagnosis in January James underwent an initial MRI scan which showed a severe brain condition that required an immediate treatement. Because of the severity of his condition, surgery was simply not an option. He was put on immediate Radiotherapy for six weeks, after which, a further scan did show some encouraging results. But all consultants who we approached were repeatedly cautious not to extend false short term hope for James. It was becoming increasingly evident that we were in for a long hard slog to confront this illness if we were to save James.

Proving far more resilient than the average parent, Sue and I dived head first into the vast information available on the Internet and extracted information crucial for James's future. Despondent with the often heartless routine with which the NHS interacted with us, I realised that answers to dire questioned lay elsewhere, far away elsewhere. I began to learn of other families whose children had also suffered from the same and extremely rare condition James was suffering from. I began to share notes and found my outlook had transformed from one of blind hope to one of intense focus.

This activity culminated in learning of pioneering drugs that were available to children of James's condition, but which came at a high cost. The cost factor is what we suspect tended to dissuade the NHS from pursuing it vigorously themselves as most of us would have expected. After all, most of us have been paying in thousands of pounds into the health service all our working lives." Surely now at our time of most need we should not have to feel at all guilty for the cost of treatment, especially as it may prove to be James's only hope,"

James is currently on a pioneering drugs with many supplements that cost in excess of Ł200 per month, a difficult task for us as a family living on one salary. It was always explained to us that the full effects of these drugs would not be completely realised for at least six months. A long awaited and feared MRI scan, some seven months after the first, did show that James’s condition hasn’t changed as we hoped. James himself is in good health, not suffering at all from some of the side effects expected from such extreme treatment. That itself was a blessing from God to whom we have turned very heavily. Our faith had given us all the strength to reach this far and have received great support from our extended friends and family. 'Even people we have never met have sent us beautiful words of support and encouragement which we still draw on today. 'We are fully aware that faith alone cannot offer us the miracle we cry for. But faith alone can inspire us to focus hearts and minds to find direction and strength to help us do the right thing, and do Gods will.

Although not rejoycing, we are mildly encourgaged by the result of the most recent MRI scan. According to the consultant, James’ condition hasn not progressed. Currently James is active and participating in some of his activities.. Although at present James is clinicaly stable, the thought of the beast still being in him keeps us attentive towards his activities and behaviours.
We now have to go the distance and continue the present course of pioneering drugs and pray that, in time, they will attack the offending cells in James's brain. The hope that makes an exhausted man get up off the muddy ground, dust himself off and continue in the direction he knows he has to go. We have no other choice, and so with us as a family, we are neck high in a task we know we absolutely must succeed in. Its the distance we have to cover that shakes the mind and the waiting that pulls our endurance to the maximum and beyond.

Monday, June 08, 2002 at 02:38 AM (CDT)

"A BIG THANKYOU"

We would like to begin by thanking everyone who made James’ day so special by sending him cards and/or gifts. Your cards and gifts have contributed to make James’ birthday so special to him, he just felt so important and loved by you all. We cannot begin to describe the happiness that was on his face on that morning when he received all the parcels and cards through the post. Thank you again for your kindness and thoughtfulness in making his day so special. James received a total of 59 cards sent from all over the world.

James's ninth birthday was recently held at the Zapp Zone in the Mega Bowl, Streatham, who were more than happy to host the function on their own account when they heard of James's condition. One can't help but feel admiration for the management of such a company that found it possible to rise to the occasion and take a detour from their normal profit driven activity. Our hats to all at the Mega Bowl, particularly Angie Chandler and a great word of thanks from all those rooting for James's recovery.

When leaving the Mega Bowl, James was accompanied by all his friends to the local Pizza Hut, the Colonnades, who were also kind enough to grant us a discount. The way to go to Pizza Hut, Mayday Travel was the company that transported the party to Pizza Hut again on their own expense. A great thank you to all the guys at Mayday Travel. Sue, myself and all others involved with James won't forget the kindness.

The entire arrangements for this function were put together by a remarkable mother and friend whose own children also attend James's school. Cathy Moore, we owe you a tremendous thank you and appreciation for the planning and organisation that allowed the day to pass so successfully and to make it so special for James.

James's reaction to his day was one of amazement for us. We work so hard to treat his mind and to keep him in high spirits. Yet this task was made all the more easier, thanks to the participation of all those named above. James still recalls everything that went on during the day in such a way that all the misery that normally occupies his day seems to have taken a back seat. And why not?

Amidst all this, we now face the date in early July for James's next MRI scan, a crucial time for all of us who have followed James's progress these past few months through such articles as this one. 'We are absolutely at the edge of our seats in anticipation of the likely results. As devout Catholics, and even with the great optimism we came away with from our audience with his Holiness The Pope in Rome last April, we still pray for God's mercy every day and to restore our James to us. We have to learn the hard way, what life's true priorities actually are or should be. All those closest to us also have to acknowledge these lessons, and their lives have undoubtedly changed, one way or the other.
We will continue to update and write about James's troubled road ahead, and please continue your prayers especially on the 2nd of July at 8:30 am onwards when James will be in the horrible scan machine.

For now, we wish James HAPPY BIRTHDAY and we look forward to the next.

Wednesday, June 05, 2002 at 04:06 PM (CDT)

Working through pain

Most people, like you and I, spend the majority of the Autumn preparing for Christmas and the ever growing expense of making it all better than the previous year. But Sue and I received an altogether different parcel on our doorstep, and it had nothing to do with Christmas.

James was rushed to hospital complaining of tilted head and double vision. Like many parents, the true nature of the child's symptoms were not immediately realised or understood. An MRI scan soon revealed that little James was suffering with a life threatening brain condition.

One can't begin to imagine the horror of being told by tragedy-hardened doctors that our child was seriously ill. But we had to piece ourselves together, once the initial trauma had subsided.

Understandably, my wife Sue was unable to consider returning to work until her mind allowed her to focus on anything other than James. A mother's protecting instinct transcends all other considerations, and it is this attribute that sets women so far apart from the weaker men.

I had to give up a promising career in IT to focus all my efforts on James and researching all possible pioneering treatments for our only son.

But practicality dictates and however traumatic or daunting the prospect, Sue had to steel herself for the day she would have to return to work, having to separate herself, somehow, from James's side. Though confident that I was there for James, the mother often over reacts to the predicament of her children. Yet it is quite understandable that we feel the need to constantly be with James. Who wouldn’t in our situation?

It was to be over three months before my wife was able to physically make it to work. Sue said, "You could not imagine the genuine feeling of concern and support my work colleagues showed towards me. They were marvellous in their anticipation of my likely mindset, and I couldn't but respond to their kindness by showing them that I was still in one piece. You have to prove to yourself, first and foremost, that returning to work was achievable and necessary for the family's long term survival, and that soon, the routine of work married reasonably well with the reality of James's condition."

Obviously, life for us had changed from top to bottom. What seemed important prior to Christmas now just paled into insignificance. All that you took for granted now lodged so heavily in your mind morning to night. But if only we could arrest time and savour the true joy of our children and their innocence. Life these days simply compel us to live at unacceptable pace, making it almost dangerous to get off and try and slow things down.

When Sue arrives home each evening, she barely has time to rest. Bear in mind that I can do many things, but cooking is not one of them! The added trauma for mother Sue is her arduous task of feeding little James, whose appetite has diminished 60% as a result of all the medication he is administered daily." Currently there are so many do’s and don'ts now when it comes to feeding James. We have had to almost learn another language when considering revised diet for James”.

This diet has meant little or no sweet things for James, which, perhaps, is the hardest pill for James to contend with. " James would often go into one when we have to refuse him chocolate spread or ice-cream. He would cry for quite a while, almost tempting us to give in and pander to his short-term desires. But despite this we grab a hold and remind ourselves why this is all necessary, and the consequences of not adhering to this tough regime".

Of course James isn't fully aware as to why all this is so necessary and to the extent we follow it. “I feel fine, really, and therefore, if I feel well why should I not eat what I want.” said James on more than one occasion. His sister Christine is remarkably supportive, and carries herself far from the usual brother / sister rivalries. She has to mature well before her time and is a solid source of support for James, who is not ashamed to admit it.
Christine often notices how overbearing we are towards James, and honestly believes cutting James some extra slack may actually work to their long-term advantage. It's possible that she may have a point. But a mother's instinct tends to be closer to reality and it is this Sue has to wrestle with every day, even whilst she is up to her elbows in files at the office. A casual stare out of the window is a sure sign that Sue's thoughts are with James and all the drama that goes with it.

Where do mothers find this remarkable inner strength to keep going when most of us would simply fracture into many useless pieces and scatter in the wind. Perhaps, many of us reading this article can relate to their experiences. Others can only contemplate what it would be like and how they would cope. As devout Catholics, our faith is the primary source of inspiration and hope for the future; however, God has planned it for us.

Wednesday, May 22, 2002 at 04:24 PM (CDT)

We never thought it possible in our wildest dreams, but look at where life has taken us.
We have just returned from a five-day visit to the Vatican to meet the Pope, who would often agree to entertain those unwell and seeking spiritual saturation. This was such an experience for us and our eight-year-old son James, who was diagnosed in the New Year with a crippling brain disease that required immediate treatment from wherever we could get it.

We found it enormously difficult to accept that our little James had an illness that may have been developing for some time. 'It never occurred to us that seemingly mundane symptoms could actually transpire into something nothing short of our own Armageddon."

Despite our severe predicament, we never once considered to lose faith and not once questioned God's will. All we did instead was to harness the little strength we had left amongst ourselves and travelled far and deep into the Internet. We would pursue every article remotely touching on James’s condition and even confronted the most learned of Consultants with news of pioneering drugs and procedures we thought our son could benefit from.

Throughout all of this, absolute faith in our religion and the merciful nature of God's is what propelled us forward in the direction we simply had to go. And recently this direction was Rome and the Vatican. James's case had reached the ears of Rome and the Pope himself. We were invited to an audience with his Holiness, along with, of course, other sick and disabled people.

How paradoxical life is that the beauty of Rome for us could only be witnessed under such dire circumstances for our son James. From amidst the deepest misery and apparent despair in the UK we were able to be surrounded, from every direction, by tremendous beauty and serenity that is so part of the Vatican. We could at times hear our hearts beat quicker than we could think in sheer awe of the occasion. James particularly absolutely adored many Basilicas and numerous fountains adorned so richly with typically Renaissance art and sculptures. We were pleased to see James laughing with spontaneous energy darting around everywhere not wishing to overlook a single sight. What we were particularly thankful for was that James had recovered his appetite for fine and authentic Pasta and Pizza.

Isn't it remarkable in itself that such an experience could up lift such a sunken heart and raise the human spirit to such an extent that one were tempted to deny the reality we had left behind in the UK. Yet, coming home was not such sweet sorrow, as our trip had renewed even further our faith in the future. James had not only met the Pope but had actually been hugged, kissed and blessed by him. A prayer was said over his head and great warmth, James explained, was felt from the Pontiffs hands. James couldn't help but feel important and that he was destined to be there somehow.

How strange life is when night becomes day and day then becomes night, only to prepare for day once again. Christine, James's fifteen-year-old sister, an unsung hero amidst all this drama, never failed to observe the radiance that emanated from James's face throughout his time in Rome. Good thinking, positive thinking are themselves medicinal treasures grossly underestimated and should be given much greater room in our lives to help us and those even less fortunate than us to confront destiny's bitter kiss.

Wednesday, May 22, 2002 at 03:42 PM (CDT)

Monday, April 15, 2002 at 04:18 PM (CDT)

We have just returned from Lourdes the home of miracles where we found hope and renewal of strength to continue the fight against our son's life threatening brain condition. The trip was very uplifting and was certainly a source of hope and strength, but it was also mentally and emotionally exhausting. A recent trip to see a consultant at the Royal Marsden Hospital brought positive news that James has responded well to the radiotherapy, but the need to seek alternative treatment abroad remains because the negative prognosis of James’ condition has not changed.

Monday, April 15, 2002 at 02:30 AM (CDT)

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