Last Update on Joseph :: 03. 09.07

 I'm writing this email with a heavy heart and great sadness.

Joseph passed away peacefully on Friday evening in the comfort of his
own home. He died in his mum's arms and was surrounded by his family's love and warmth. He was nine and a half years old.

Joseph was a beautiful, perfectly healthy child, but was diagnosed at the age of 2 with a brain tumour in 2000. During the past 7 years he has had the tumour removed 6 times, each operation leaving him with another physical defecit for him to deal with....

However, the disease never affected his mind...... his witty humour and innocent determination helped him to cope with these physical inadequacies. He was a popular boy and he longed to be athletic and compete with his friends...... His belief that he would be fit and strong one day enabled him to push this disappointment aside and instead he excelled in knowledge and humour. He was the brightest kid on the block and was always two steps ahead with a funny remark or the answer to an obscure quiz question.

Above all, the most striking characteristic of Joseph was his compassion. A righteous individual who insisted on fair play and would run through a brick wall to protect his sister or friends. His kindness and unselfishness were remarkable and will live with us forever....

Over the years, this love inspired us to search for a cure and never give up on the hope that Joseph would live. Indeed, faced with the hopeless statistics, Judy and I never once believed that he would not survive. Whilst Nancy (his sister) was busy teaching him dance moves and laughing with him, Judy would be monitoring his peace-of-mind and dignity, constantly thinking of ways to keep his spirits high and his appearance good. The four of us were a good Team and we negotiated our way through the most tragic and difficult traumas one could imagine for a young family.

On August 1st, the scan results confirmed the worst. The tumour had grown to such a size in such a short time, we found ourselves for the first time with no choices. Surgery was not an option and Joe was too weak to take any kind of treatment. Apart from a miracle, the hope for his survival disappeared in an instant......

We had 30 precious days and nights together and our love shines stronger for Joseph now than ever before.

You have provided us with genuine good wishes, love and wonderful support over the years in our endeavors and we are truly grateful to you. I will send news of Joseph's funeral arrangements should you wish to attend.

Joe is finally at peace and Judy, Nancy & I have to try and find happiness again because he would be horrified to see our pain. Hope has always carried us through............... and it will continue to do so.

My love and best wishes to you all.

Andy
XXXX 

Update on Joseph :: 22. 06.07 

Firstly, may I apologise for not updating you sooner with the news. Lots
of plates spinning at the moment!!

So, a quick re-cap....... January: Joe had an op to remove the stray catheter that had skewered his brain stem.
February: The Scan confirmed the cancer was back. (after everything he
went through in the States)
March: Successful operation in Birmingham to remove the tumour (Joe's
6th resection in 7years)
April: Sudden Collapsed lung, intensive care for a week, almost lost him.
May: Pneumonia, in hospital for a week.

Joe's been at home for 6weeks now apart from the pneumonia week. He's
fit and strong and his balance is improving with daily physio. He has a busy routine each day with teacher, physio, swallowing exercises, playmates, watching cricket and more cricket. He longs for the day when he can walk and eat again, mentioning it each day.

Joe hasn't swallowed food or drink since April 2006, his tube feeding is
very efficent and works well but takes away all of the enjoyment and the
social gathering of meal times. It will be some time before his swallow will improve enough to regain safety required for eating & drinking. If he drank a glass of milk today, 30% of it would go into his lungs.

The walking, however is much closer. Joe's football team (B'ham City) have their first Saturday home game on Aug 19th and he is booked in to be the Team mascot that day. This involves walking out with the team on National TV and he's determined to keep his appointment. He'll need some help but he's going to do it.

The latest scan (June 5th) shows that the disease is still there but in a scattered state. Joseph is currently taking Retenoic Acid as an alternative approach to foxing this cancer. Chemo & radiation kill thecancer cells, Target drugs (tarceva & lapatinib) starve the cancer cells of their food. Neither of these approaches have worked for Joseph. Retinoic Acid causes differentiation, encouraging, Cancer cells to behave properly and not divide too quickly. The main side effects are sore lips and sore skin but Judy works hard with Joe to avoid this becoming a problem.

The next scan is planned for mid August when we will know if the treatment has worked. I'm currently working on another treatment that I discovered in Moscow 3 years ago. There's an outside chance it may work for Joe and we need a contingency plan so I'll let you know my findings after I've visited the 2 hospitals that practice this in America and Australia. We have to act quickly because time may not be on our side.

Lets end with the present........ Right now Joe is happy and has a full life with dreams and aspirations. He's so funny with the things he says and he loves playing cards with large groups of people. At weekends we all oblige and play for hours. He loves every minute of it, cracking jokes and holding court!!

We may have a bumpy road ahead, but right now we're all loving life. He's sleeping in between his Mum & Dad tonight as a treat because his sister is staying at her friends. We don't get a good night's sleep, but it's priceless.

Thank you all, as ever, for your support and kind wishes.
My best wishes to you . Andy xx

Update on Joseph :: 12.04.07

 After a delay getting into hospital for Joseph's surgery to remove his

relapsed brain tumour, the operation eventually took place April 2nd and was generally a success. I say "generally" as we aren't scanning until April 20th when we will know for sure if all the tumour is out, the surgeon thinks it is.

Joe picked up a severe pneumonia post-op and it nearly claimed him. The emergency happened at 2am when he entered a coma state for a while and we spent 5days in Intensive Care to repair his lungs. I'm happy to say that he is well on the mend now, having periods of time off oxygen and even standing and taking a few steps from time to time. We should be home this weekend hopefully where we can start the real recovery programme.

Joe still has a tracheostomy and a gastrostomy (feeding through a tube direct into tummy) following surgery in April 2006. The stray catheter that skewered his brain stem last August has hampered the recovery of these defecits and indeed made his balance so bad that he hasn't walked since that time. Following the op in January to remove the catheter, Joe improved immediately and started to walk, however this slowly declined as a drainage problem built up in his head. During this last surgery, the drainage problem has been rectified again and we're now hoping for improvements in all of these areas. We are arranging for a comprehensive programme to be held at home, aimed at getting Joe back on his feet. With our renewed enthusiasm and belief

Joe will have physio, speech & swallow therapy twice daily as well as a
teacher to stimulate his fast mind.

Having failed chemotherapy (twice), radiotherapy (twice), immunotherapy and a growth inhibitor drug, the treatment options with evidence of efficacy are somewhat protracted. We have to stop this disease returning again. We have chosen a 5drug combination therapy that I found in Boston USA. This includes low doses of chemo drugs and thalidomide. The idea is not to reduce Joe's quality of life (small doses) and the objective of the drug combination is to starve the disease of its food, blood.

There is evidence of this Treatment working for some children with Joe's cancer, and we've made our decision based on that info. Some children have failed it, but Joe is due some luck and we're feeling positive that this could work. There are also many other brand new drug trials available in America but choosing the correct trial "blind" is too loose at this stage.

So....... There you have it....... A positive update! We have lots of work ahead of us but our determination is as strong as ever and we continue to be inspired by Joseph each day, he drives us on.

I'll leave you with this......... I was woken up by doctors and nurses standing on my campbed at 2 in the morning. Approximately 15 of them had rushed to Joseph's bedside as the emergency alarms were sounding. He had slipped into a coma. I jumped up startled and pushed my way to the front and for the first time in 7 years I held Joe's hand and he didn't squeeze mine when I asked him to. I shouted at him......but no response. Then came the worst bit...... I looked at the doctors faces around the bed and I could see the panic in their eyes, they looked clueless. My legs turned to jelly and I walked away to find a chair. Head in my hands I thought "is this it? Is this how it ends?" It seemed like forever, probably 10minutes, but then I heard a shout "We've got him" and I looked at the screens and all the vital signs were back. I approached the bed and squeezed his hand, he squeezed me back.

We rushed the bed to Intensive Care and when inside he opened his eyes and said to me...... "Dad, am I dead?" Some of the nurses turned away from the bed with tears in their eyes. I said " no son, you're very much alive" and I kissed him.

How better can I describe this journey that we're on. It's so draining and sometimes we are weak, but not today, we're strong and we're looking forward to the challenge ahead. We believe again.

My love and best wishes

Andy

Update on Joseph - 15.03.07

I write to you with the sad news that Joseph has relapsed. We discovered his brain tumour had returned during February. After pulling through the dangerous surgery to remove the stray catheter from his brainstem this was devastating news to us all.

Joseph has been steadily declining since this last operation, he needs a new catheter fitting to drain the fluid that he makes each day and release the pressure in his head. His walking has stopped again and his speech has been affected. Its a very stressful time for all the family as its unbearable to see Joe in this condition.

Surgery is planned next week at Birmingham Children's Hospital to attempt to remove the tumour and fit the new catheter at the same time. Joe goes into this operation already with a tracheostomy and a gastrostomy. The risks are greater and greater, but we're still determined to give him a chance.

It was his 9th Birthday last Monday and he had a great day with his friends and his family around him. He wanted to go bowling and arrive in a white limo.... and so he did. Joseph's stiff-upper-lip approach to life gets him through each day and he rarely falters, even when his efforts to do the most simple of things brings tears to our eyes, this young man carries on regardless.

We're currently choosing a new treatment for him post-op to try and stop the cancer returning. The Doctors around the world cannot offer you much help. They all have different opinions and none of the drugs have large successes of beating this disease. It's daunting enough choosing which drugs to use let alone when they don't inspire you with confidence.

I'm drawing my strength from the belief that this lad is due a break. He's been fighting this for 7 years now and three times we thought we'd beaten it. A genuine belief.......so each relapse hits you harder and harder. Seeing Joseph each day inspires us to keep going and after picking ourselves up off the floor, we're ready again.

Of course, Joe's oblivious to all of this...... He's older now, so we protect him from the constant fear that we live with. I'm conscious that this isn't a particularly positive update so I'll finish with this thought.....the odds are heavily stacked against Joseph, they have been for 3 years now. But with his will & determination, it's hard to imagine anything except a positive outcome. He's so precious.....

Stay positive for us. My love & best wishes

Andy

Update on Joseph :: 30.01.07

It is almost with disbelief that I can tell you we are home again after

the operation to remove the stray catheter from Joseph's brain stem.
The operation was a success and Joe recovered in his usual fashion by
sitting up and playing computer games an hour after waking.

On reflection, the risk we took doesn't bare thinking about. Jude and I
prepared ourselves for the worst and we never want to experience that feeling again. We were beside ourselves with fear... a dreadful time.

But now for the reward......The next morning Joe got out of bed and walked down the hospital ward holding my hand. He hasn't been able to do that since August when the catheter first skewered his brain stem.
He's been shuffling around the floor in our kitchen for the last 3months unable to walk. Professor Sgouros, Joseph's Neuro-Surgeon, is hoping that his
Swallowing, Speech & Face Palsy will also improve in the coming weeks post operation.

The Foote Family has received so much support over the past 6 years since Joe was diagnosed with his brain tumour, but never more that the last few days. The messages of hope and wishes have given us the strength to go through with this. Our gut reaction told us it was the right thing to do, but some of your messages inspired us. Thank you all so much.

Monday night, after the op, I was lying with Joe on his hospital bed waiting for him to drop off to sleep. He'd got his arm tight around my neck, as he often does and there had been silence for about 2 minutes when he said..... "I didn't give up today Dad did I?"...... I was so choked, I couldn't answer him..... I just squeezed him closer.

One of you texts stuck in my mind last night.... It simply said...."Fortune Favours the Brave" Well it certainly shone down on our little soldier on Monday. What an amazing kid.........he deserves it

My love and best wishes, Andy

Update on Joseph :: 16.01.07

Since our return from the States last June Joseph (9 in March) has enjoyed a tumour-free period and he has settled into a routine at home being educated and having fun.

His condition, however, has slowly deteriorated to a point where now he cannot walk unaided, his swallowing is worse (still being fed by tummy tube) and his airway has no signs of improvement (he still has a trachy). We are still hoping all this will improve when the radiation effects wear off.
Also, in August, his whole face stopped working, no expression whatsoever. He cannot close his mouth or make a sound like a B or an M or a P. His speech is quite hampered.

We questioned and questioned this because the nerves that control these things are away from the area of surgery and radiation treatment.

Why could this be? we asked everyone we knew. The stark answer was given to us recently after a scan shows that a piece of plastic/rubber tubing, left inside a cavity to help the natural drainage of brain fluid, has moved and embedded itself 2cm into Joe's brainstem.

It's a simple operation to pull the catheter back out but the consequence of a small bleed is severe parralasys, anything bigger would be fatal.
The chances of this happening is 20% The benefits of attempting this operation maybe zero, the damage done maybe permanent....
On the other hand, there's an 80% chance he'll wake up normal and he could recover and go from strength to strength. Two previous children had this operation before, one recovered from his defecits, the other one didn't, however, neither child had a bleed.

Jude and I have made many serious decisions in the past 6 years over Joseph's treatment strategies and in particular his operations, but most of them came with the alternative that the tumour would claim him if we didn't go for it. This is different to those, we don't have visable disease currently. This is about trying to improve his quality of life........ but maybe destroying it at the same time.

Joe is intelligent, sharp, witty and very funny. He can have you in stitches with one sentence. He loves a gathering of people, sleepovers with his friends and going to the football. To see him struggle to walk, to talk and to breathe is heart-breaking and our future vision of him is not like this. We imagine him coping with these basic functions and leading an independent life....... Indeed, this has been the very foundation of our drive and determination. We never imagined him to live his life in his current condition. Not once....never..... And we still don't.

It's with this thought in our minds that we are seriously considering letting Joe have this operation. It's booked for Jan 29th and we need to find the courage and clarity to make that decision. We cuddle him all day, every day. He's so handsome & lovely and the thought of losing him is unbearable & unthinkable.... but you ask yourself the question.... "are we looking at it from our own selfish persepective?" What about his point of view and what's best for Joe?

This is the most difficult decision to make so far and we are extremely frightened by it. Nancy (12) is being normal and coping well, she seldom shows her pain regarding the challenges that her brother has to endure. Joseph.......well... he hardly ever complains.....he's very astute and probably knows whats going on but chooses not to comment.

Don't feel the need to reply to this update, it just helps me to write it down and send it to you. I know how you all must feel when you read them. I would feel the same way for you if you were in our shoes. We will find the strength.... and we will make the decision. The fear causes you to waiver at times....but that's understandable.

Our Joe's such a great kid, were so proud of him.

My best regards to you allWith love, Andy x