Latest Update on Joseph :: 21.11.06

Joseph had his 2nd quarterly scan last week after his April surgery in America and it showed no signs of recurrent disease.

Along with the August scan these represent the first clear scans we've had since April 2004, however Joe has had to endure significant damage to get to this position, but he believes he can recover and live a normal life again.

Right now he's still breathing through his Trachy and we feed him through his tummy button, but there are signs that he'll soon be rid of these, maybe in the next 3 months and he can get back to normal again. He's still very wobbly on his feet but this should also improve in time.

And now for the good stuff....... Joe has a home tutor every morning and he's doing really well with his school work. He is following the same sylabus as his school pals and he's ahead of the class!! He has a friend come to the house every afternoon to play and we go to watch the Blues every home game.

Last Saturday Joe & Nancy were invited to the X-Factor studios to meet all the Artists and they had such a brilliant day, it was fantastic.

We have a long way to go still on our journey but we may just have a happy and peaceful christmas at home this year and we are really enjoying the normality of it all.

So many of you ask about Joe all the time, thank you so much for your intrest and care, it comforts all of us. We've added a few pictures of Joe & Nancy with their heros. (see right)

My warmest regards, Andy

Latest Update on Joseph :: 21.09.06

We returned from the States mid-June with Joseph having had a complete resection of his brain tumour (5th time) and 6weeks of radiotherapy (2nd time)

He is only the 23rd kid to receive this high-risk radiation under the U.S. trial and he's in a category of good odds, 17 of the previous 22 have made it so far, however it’s a moving picture. Similar to a baked potato after microwave heating, the radiation heat is still rising in Joe's brain and will peak in November. 

He's experiencing some neurological issues now as a result of this and we're praying that he gets past the hump safely. His current issues are a whole face palsy and increased inbalance making it difficult to walk. Christmas is the short term safe area that we want to get to however, problems can occur years latern after this treatment. Even though Jude & I are aware of this knowledge somehow we've dismissed the possibillity of this happening and we're dealing with the immediate issues.

The Surgeons told us that a tracheostomy (breath through a hole in the neck) and a gastrostomy (feed through a stomach tube) would be a temporary necessity as the required surgery was aggressive to get all of the disease out. Its been 5months post-op and Joe is still coping daily with these conditions. He's still bright each day with a hilarious sense of humour that has us in stitches and he just gets on with it.

His daily routine is: wave off his sister to school, read the newspaper (really, he's 8!) home tutor, smothered by his grandad, playstation, weakest link and then he starts ringing his Dad asking when I'll be home. Watching Joe live like this is sometimes difficult for us all, however he is rarely down and he continues to inspire us with his enthusiasm and cheeryness.

Negativity would be an easy place to find, we just need to keep going and pray that his beautiful little body can repair itself. He really is an amazing kid. 

Stay positive for us, love to you all, Andy

Update on Joseph :: 15.06.06

I'm pleased to tell you that today, after 3 months in America, we're flying home. Joseph has his last Radiation treatment today and we're driving from Little Rock to Memphis to fly through the night. We have oxygen booked on the flights incase the altitude affects Joe's breathing.

The whole ordeal was extremely traumatic for the first 2months, Joseph was so weak post-op and his breathing difficulties threatened to claim him. We prayed and prayed. Today, we're bringing home a lad who is so excited about the World Cup he's ready to burst!

Joe has a Trachyostomy (breathing through the neck) and a Gastrostomy (feeding tube direct into tummy) these were neccessary by-products of the aggresive surgery required to get all of the disease out. We are expecting to have them both taken out by late summer if he continues to improve. Joe has an excerise routine every day to strengthen his swallowing muscles and he takes it really seriously.... he's determined to eat again and get rid of his trachy as soon as possible. He has a "Swallow-Study" every 4 weeks and he needs a "100% Pass" to eat safely without aspirating into the lungs. His first attempt was 10%, however his more recent attempt was 90%. Joe was really nervous leading up to it, like taking an exam, he wanted it so badly and he'd practiced so hard. The disappointment was heart-breaking but afterwards, he pulled himself together and said "I'll pass next time".

I couldn't help compare this process to when Nancy had her exams or when she auditioned for her part in "Annie". The similarities were so alike..... the contrast almost surreal. Here we are in the middle of America and our little lad is taking a test to see if he can eat!! Then I flash-back to 3months ago when his condition was dire..... Joseph has come a long way, he's walking and talking and having great fun every day. His weight has gone from 19kg to 24kg and he has his sights fixed on getting back to school as soon as possible.

We continue to learn from him each and every day and i really am humbled to call him my son. This journey is by no means over, Joe will have scans every 3 months to monitor his progress and we continue to hope. I've learned so much from all of the research and travelling but my greatest lesson so far has been that true belief can overcome the greatest of fears.

Lets hope England can display this quality in Germany!! Thank you for all of your kind messages whilst we've been in America, stay positive for us.
My best wishes, Andy

Update on Joseph :: 16.05.06

After 5 weeks in Memphis we were transferred to Little Rock in Arkansas for Radiotherapy 2 weeks ago. The hospital here has the latest in technology and they have a busy "International Patient" programme.

Joseph has continued his recovery from the pneumonia slowly and is starting to walk again. The feeding tube has been removed from his nose and his hair has grown back which has delighted this extraodinary young chap.

We moved out of the hospital into a house last week and things are semi-normal. Joe goes in each day to the hospital for his Radiotherapy (1 hour) and so far he's tolerating it well. We have 5 weeks to go and if all goes well, we'll be home 3rd week of June. It will have been almost 3 months away in total.

As time goes by, it's been a challenge to keep Joe's spirits high being away from home so long, so it was a great boost yesterday when Ben (Joe's school pal) arrived in Little Rock with his family. The change in Joe has been remarkable and he is up and about with a new enthusiasm.

We're off to see the Bill Clinton Library today and enjoy the hot weather. Thank you all for your messages and presents, its been a great comfort. Joe reads his emails with great joy and in particular enjoys the photos.

We still have a long way to go as the Radiation may bring its own difficulties, but Joseph's determination grows each day as his body regains its strength. Stay positive for us.

My best wishes, Andy

Update on Joseph :: 17.04.06

Just a quick update on Joseph's progress. He is stable with his breathing.

His lungs need to repair but he's so weak he can't do it on his own, he's receiving ventilator support. The liquid food is only maintaining his current position. Hopefully he will start to eat himself tomorrow. This will speed his recovery up.

The Nurses here all adore him and he's been showered with presents over Easter. Hope to give you good news later this week.

I hope you all enjoyed the Easter break, the weather here in Memphis is fantastic!
My best wishes, Andy

Update on Joseph :: 06.03.06

Our 4th day in Memphis is a blessed one. Joseph's scan came back clear meaning the unbelievable surgeon got all of the tumour out. If you could have seen the images showing the tumour before surgery you would find it hard to believe that Dr Sanford could achieve a gross total resection... but he did!!

So after this good news they decided to take out the tube that was inserted into Joe's mouth and down into his lungs. At this point the ventilator was "breathing" for Joe. This was where it would be decided wether he would have to have a tracheostomy. He started to breathe normally and so, thank goodness, he doesn't need one.

He can talk, but slowly and very softly. Joe needs 2 or 3 weeks to get strong again and recover. The final test is his swallowing function. We will test this over the next 48hrs.

We are so lucky and feel this has been a miracle. It's another step towards our dream of a quality survival for Joseph. There's a long way to go but we keep believing. If we can get him home for Radiotherapy... he has a chance.

I'll update you tomorrow. My love & best wishes Andy xxxx

Update on Joseph :: 05.03.06

 The 5hr operation went well today and Judy & I are relieved.

The next 24hrs are crucial as the swelling near the brain stem is dangerous initially. Joe will be kept asleep for the next 24hours and they'll scan him tomorrow to ensure they haven't missed any tumour.
He awoke briefly post-op and was angry because he wanted a drink... what a relief to see our Joe compus mentus.

He'll be in Intensive Care for 3 days and then he'll be assessed to see if he will require a trachyostomy. His cranial nerves (which the tumour surrounded) haven't been severed, so if he does need a trachy, it shouldn't be a permanent thing (we're praying).

If Joe's recovery goes well, we may be able to fly home within 3 weeks. This would be ideal because the whole idea of this op is to have further radiotherapy in the UK. Without this treatment, the tumour would be back again soon. The stats of children who have had this treatment say that 17 out of 22 have made it so far, although it is a moving picture.

We need the 6weeks radiotherapy to start asasp... four weeks from now would be ideal, any longer and the disease gets time to re-group. There's a long way to go but we are halfway over the first hurdle.

Thank You:
To Nancy for being oblivious to all this at home in the UK
To Birmingham City for beating Bolton the other night, this sent Joseph
crazy with excitement and helped make the pre-op period pass easily.
To All of you who believe that Joe has a chance, keep positive with us as we
take one step at a time.

Will update you after the scan results tomorrow,
My love and best wishes Andy

Update on Joseph :: 09.02.06

For the past 5 and a half years now, Joe has had a scan every 3 months. 

It seems a distant memory that we got some positive news.  Yesterday's scan shows that the 20% residual tumour that was left after the Nov28 operation has grown, inspite of a course of chemo/tamoxfen that had delivered encouraging results for recurrent ependymomas historically.

We have choices to make once more. Surgery is not an option this time as the damage would far outway the rewards so soon after the last op, maybe in 6months we can revisit when Joe is stronger..

We can try a different chemo or a growth inhibitor drug or a combination of the 2, we're looking into this now. There are several "long-shot" treatments that I've found around the world, maybe now is the time to go for one of these? However, the risks are normally high.

Further radiotherapy would only be appropriate if we can get a shrinkage.

Now….. After painting a doom & gloom picture let me give you the positive news. 
We found an appetite stimulant drug for Joe recently and he has shown a great improvement in the past 2 weeks. 
He was the mascot at B'ham City last week and led the team out against Arsenal… he had the time of his life!! 
He's eating 3 square meals a day and his outlook has completely changed, he's positive, he's happy and he has zest. 
Joseph is not fit enough to be at school but he has a great sense of humour and he's as sharp as a knife!

All the odds are against us but we know there's a way and we're going to keep looking. Judy and I are almost oblivious to the danger that Joe's in…. We just see hope and a positive way forward.We believe there's a lot to be said for the placebo effect of well-being and a healthy recovery.

So, I would ask you to be positive for us, if you have faith pray for us and of course, if you have any ideas or news please send them on.

And in the face of all of this adversity, Nancy is doing really well, head girl at Ruckliegh, just passed for Solihull School and chosen for the "Annie" production due to be on the Old Repretory Theatre, B'ham for 2 weeks in July. Like Joseph, she's also a great kid. She's had to deal with 5 years of limited attention and the obvious worry. They sleep with their faces 1inch apart every night!!

I can try and imagine what thoughts & emotions you go through when you read these updates. When you're in the eye of the storm, as we are, its hard to see clearly. But I mention this because we have resolve, strong resolve, and we will fight, and believe whilst we're fighting. We may be down…but we are definately not out.

As always, your kind wishes and thoughts are a tremendous strength and source of comfort to us….thank you all. My warmest regards, Andy