LATEST NEWS.

29th May 2010.

We finished our radiotherapy treatment last week and Felix was BRILLIANT. We travelled up to the hospital everyday for 3 weeks for the 'beamers' as Felix lay like a perfect statue. The tummy beamers were easy but the head mask was terrifying and looked right out of Nightmare on Elm Street, which of course made Felix love it even more. He was such a laugh to hangout with during our daily journeys, never once did he say I don't want to go to the hospital or wonder why we were going. In fact he thrilled in seeing which toys the play specialists had laid out in the 'hostible' playrooms.

On our last day of radiation, the team pulled out all the stops and awarded him an extra special power ranger, star wars and batman packed certificate and balloons. We then made a dash straight to the 'hostible' playroom where Felix enthusiastically painted his mask while Grace and Elliot painted regular craft masks so as not to feel left out of all the 'headgear excitement'. That same afternoon we took Felix's line out which means swimming everyday for 3 whole weeks!. We are making the most of it locally then travelling to the Isle of Wight for 3 days this weekend then to Portugal from June 2-8. We will then begin what we pray will be Felix's last phase of treatment. On June 14th  Felix will be given a monoclonal antibody which is basically proteins designed to bind and kill neuroblastoma tumour cells.

The treatment has been trialled in the United States for over 8 years and is just about to be published as proven standard of care. There are some major downsides to the US treatment namely that it is highly toxic (painful) and secondly limited supply.  Tragically, 750 children in the US will be diagnosed with neuroblastoma this year and there is only enough antibody for 150 of them. Miraculously, Felix has recently been accepted onto an antibody trial in Germany. This means that we will be there for 10 days every 5 weeks for the next 5 months. We will all be heading there straight from Portugal on June 8th and Grace and Elliot and one of us will stay at parent's house on site. We will all be back home on June 24th with 4 weeks recovery before heading back to Germany on July 22nd for the second cycle. The German trial aims to decrease the toxicity of the US trial so the drugs will be given in a different way. We hope and pray that along with being pain-free,  this treatment will be equally if not more effective.

On a separate but much related note, it has been a really exciting couple of weeks on the fundraising front. A massive THANK YOU and CONGRATULATIONS our 130 fantastic runners who braved the windy seafront last Sunday for our second annual Super Heroes Run.  There were capes fluttering and plenty of lycra on show as our team Wonderwomens, Batmans, Nurses and of course Power Rangers ran their hearts out for Felix. The team has raised an astonishing £16,795 ($26,000 Cdn) with donations still coming in! A big thank you to all who ran, cheered, donated and supported the event and especially to Emma Capron for the idea and organisational genius. Equally, a big THANK YOU and hats off to our 5 fantastic Brighton and London Marathons runners who ran for the appeal. Amazing result and special thank yous to Sara, Dave, Jonathan,  Ben and James!!!

There are also two more fantastic fundraising events on the horizon. FRIENDS FORE FELIX GOLF TOURNAMENT, June 12th, Canada. Three of my oldest and dearest friends Tray, Sue and Denise have put together a cracking day for golfers and families with the tournament, putting competitions, funniest photo contests, a silent auction and of course, the famous Canadian BBQ. So all of you English guys NOT watching the world cup on June 12th, get yourself over to Canada and join the fun! Thanks Team Canada!

And lastly and very excitingly, award-winning comedian Rob Brydon is hosting a one off evening of stand up comedy and surprises at The Theatre Royal in Brighton on Sunday 14th November (the day before Felix and Elliot's 6th Birthday) to raise money for Felix and Neuroblastoma.  We are so grateful to Rob, who suggested the show after a receiving a letter from Felix's auntie Shoonagh. The event went live yesterday with radio and newspaper interviews and tickets went on sale today at http://www.ambassadortickets.com/Theatre-Royal-Brighton. Having just looked at the seats available, the demand is incredible and we haven't even bought ours yet!! If you're a fan, get booking!

Well, I think that's about everything for now. Our focus for the next 2 weeks is fun, sunshine and swimming! Felix is doing so incredibly well. Our focus then is the antibody and getting our 3 little guys through the next five months feeling secure, having fun, seeing a new country and maybe learning some German!? Much love to everyone. 

Love Matt, Colleen, Grace, Felix and Elliot XXXXX   

21st April 2010.

In mid Feb, Felix finished internal radiation, sailing through his 10 days in isolation...and actually having a really fun time. We had a lovely week away in Dorset before coming back in for high dose and bone marrow transplant. This is a procedure we have been dreading since it was explained to us a year ago.  Five days of continuous aggressive
chemotherapy 24 hours everyday which is intended to strip the body to rock bottom, killing any lurking neuroblastoma,  before rescuing him with his own stem cells.

Psychologically, this was very tough, as over the past year we have witnessed many children going though this part of the treatment in such pain and often landing in intensive care with major problems. Over the course of our high dose week, we were convinced that they must have made a mistake and were infusing him with apple juice, as his appetite and energy were sky high. Grace and Elliot were able to have sleepovers and the three of them ran wild around the hospital. Grace struggling to keep pace with Felix whilst pushing his 'robot' (the metal stand on wheels that holds the bags of chemotherapy).  Three days after high dose ended, he then had his stem cells put back inside him. This was a bit anti-climatical being just three small syringes containing

what looked like watered down blood being hand pushed into his 'power ranger blasters'. We then came off the 'robot' and waited for his blood count to drop. During this time, it was great because he felt so well and we spent our days running back and forth between the school room and playroom. We were able to skype into his 'real' school classroom most days which enabled him to continue feeling very much a part of the gang at home.  Towards the end of the week,  his appetite slowed and the effect of all the drugs started to slow him down. On the Sunday morning, he woke up and found that some of his hair had fallen out on his pillow overnight. I ran a warm bath and he jumped in and began excitedly pulling out his hair.  He was fascinated by this and insisted we skype friends so they could see how he could do this so easily 'AND IT DIDN'T EVEN HURT!'  As his mum, it was extremely painful but crucial to enthuse in his excitement, seeing all his hair, which had only just regrown, all over the tub. But, we knew this was clearly what he wanted to do in the moment, and I honestly don't think I have ever been more proud of him. Within a half hour, he was completely bald again, and just as beautiful.

At the end of the week his blood count finally dropped......just around the time that his power rangers blaster accidently got a hole in it. 6pm on Friday night, on a cocktail of many different drugs and a blood count of zero,  this was panic. They tried unsuccessfully to repair the line at 4am so we had to wait until Monday to put a new line in. As the line was 'open' for the weekend, therefore at high risk of infection, we had to put the new line into his arm (the existing line had been on his
chest). He spiked a temperature 2 days later, meaning the 'open' line did in fact cause an infection. This was so unfortunate as up until the line accident, he was breezing through this gruelling treatment. As soon as the antibiotics had run their 10 day course, we came home, after 5 weeks in hospital.  The minute we landed on the doorstep,  Felix jumped on his scooter and the 3 of us went to pick up Elliot and Grace from school. As he scootered in front of us, Matt and I looked at what the
recent high dose chemotherapy, bone marrow transplant and 5 weeks in hospital had done to our boy....he looked thin and pale, particularly now beside Elliot.  Elliot, his identical twin who since birth no one other than Grace, Matt and I have been able to distinguish from Felix. Now, the difference so pronounced. 

As with all our treatment over the past year, the gap in treatment fell exactly to the day when school holiday time began.  Just like at Christmas and February, the five of us were able to spend the entire Easter holiday side by side. The sun shone and we lazily hung out at home or on the beach 10 minutes away. This brings us up to last Friday, when we went back up to London after our  3 week break for our 7th MIBG scan, this one like the last 4 scans, to see if the spot on his skull had  finally disappeared. As usual, he helpfully fell asleep for the entire 2 hour scan so Matt and I could focus on the images.  Although, it is as small as a pinprick, the XXXXing spot is still there. This was and is hard to take, considering our goal of a clear MIBG scan. It is very worrying, although, Felix's consultant feels that this spot might very well be a mature (i.e. inactive) benign cancer cell. As there is no technology currently available to confirm whether it is in fact mature, we do need to treat it aggressively as though it is active. Hence, we will be radiating his primary tumour spot in his tummy as well as the trace spot still lighting up on his skull. Nothing in his tummy is lighting up on the scan but this is the protocol to avoid relapse in that initial area, which happens to 40% of the kids.  Radiotherapy will start next week, April 28th and will run everyday (except weekends) until May18th.

 Today we spent the day up at the Marsden preparing Felix for radiotherapy. This was intense. We started off the day signing consent forms and showing him all the equipment using all the usual 'light beamer' lingo we could muster up. Then came the job of fitting a mask to ensure his head stays completely still during the treatment to the skull. This involved covering the entire front of his face (with a small hole to breath at the mouth) with a thick wet material and bolting the material tightly to the table he was lying on. Even as adults, the thought of being blinded, covered and tightly bolted anywhere is terrifying,  and he was panicked at first. We then decided to let him build a 'hand rocket' and mould it himself. He thought this was fun and was able to calm himself down to begin the head mould. He lay completely still and patient as they moulded the 'power ranger' mask around every angle of his face and head  until cooled and hardened like a rock. Truly astonishing. I nearly fell down when he said as he left the moulding room, "That was well cool, I can't believe Elliot has to be at school doing all that work, while we get to be here making power ranger masks.'

We promised him that after his 3 weeks of radiotherapy, he can take his mask home and we'll paint it to look like a real ranger. We then had an hour for lunch, then straight up to the CT scan to check the head mask was fitted perfectly and prepare the tummy area. This was the first scan that Felix has ever had to do without Matt or I in the room. He lay perfectly still as they lined the beams onto his tummy. After this finished, they tattooed his tummy with 2 very small permanent ink spots.
Overall an action-packed and emotional day, but we're now all set for next week.

After radiotherapy, is the final stage of Felix's treatment, immunotherapy. This has been occupying the majority of our efforts and stress levels over the past 2 months. There is a proven antibody trialled in the States which is not available in Europe yet. The criteria to get access to this trial, is that you have to have it within 9 months from time of diagnosis. As Felix is now beyond that, due to the fantastic belt and braces care he has received and responded extremely well to, we are ineligible to go to the States or Canada for this treatment.  We and Felix's consultant have been working tirelessly on ways to make this happen over here in time for Felix. We had a promising meeting yesterday at Great Ormond Street and we will hopefully get confirmation this week or next. The main dilemma is that we have 49 days to get this treatment  as we know that the most effective time to
administer it is within 100 days from bone marrow transplant. (I.e. by June 9th). If Felix gets this antibody in the way it was trialled in the US, his chances of cure automatically jumps by 20%. This means his chances of long term survival would be 70%. He has come so far and proven how strong he is taking in all this treatment to date with no effect whatsoever on any of his major organs,  hearing, or most importantly his zest for life. As his parents, all we really want to be doing right now is nurturing and building him up from transplant and preparing his little body for radiation. Instead, we find ourselves
learning the intricacies of drug company politics and clinical trial funding.  This is a battle we are 200% committed to fighting though for Felix and the many kids across Europe whom it will benefit.

A quick note on fundraising. We had the pleasure of cheering on five runners of the Brighton Marathon who ran for Felix on Sunday. What an amazing event and a big thank you to our fab and fit runners. A special good luck to our London Marathon runners this coming Sunday. Also to say, our lovely chum Emma has once again put together a Felix, Elliot and Grace's Super Heroes team for the Heroes Run on the Brighton seafront on May 16th.  Please see  details on the fundraising page.

Our focus for the next 50 days is to get Felix safely and happily through radiotherapy (keeping in mind he is the only 5 year old to have skull and abdominal radiation without needing a general aesthetic) and to ensure that the proven antibody is firmed up and ready to go for him in early June. Big love and thank you to everyone who continues to help and support us,  especially during our recent bone marrow transplant. Felix loved all his visitors and we had the luxury of homemade lunchesand suppers EVERYDAY for  5 solid weeks. For all the love, prayers,practical support and positive vibes, we thank you immensely and please keep it coming our power ranger's way. Love Matt, Colleen, Grace, Felix and Elliot XXXXX

4th February 2010.

We enjoyed lots of hospital-free, family time over Christmas seeing all of our grandparents, aunties and many of our cousins, which was wonderful. Christmas Day was made extra special by the amazing and fun Nativity Swim4Felix in the English Channel.  Thirty-two gutsy swimmers kitted out as angels and shepherds (Matt being a wise man and me, Mary!)  took to the sea, cheered on by hoards of festive, mulled-wine-sipping supporters. Over £9,000 (about $15,000 Cdn) was raised for the appeal. A great result and what a memorable event! 2010 has started with a nerve-wracking bang! On Jan 10th we went into hospital to attempt another stem cell harvest. Getting enough stem cells for a transplant are vital to Felix's long term prognosis. A line was inserted into his groin which gathered the cells and channelled the blood to a very large, intimidating filter machine. Felix had to stay pretty much completely still for 5 hours each day while we attempted to get the millions of cells we needed. The good news arrived at the end of the week that Felix (with the help of a new paediatric wonder drug) mustered up enough cells for his upcoming transplant PLUS enough for another transplant in the future if, god forbid, we ever need it. Relieved and exhausted, we then came home for 4 sleeps before heading back up to London for the major surgery to remove the primary tumour on his adrenal gland. We met the team, discussed the procedure and risks involved, and they took him away at 10am.

We were told that the team was booked until 5:30pm, but not to worry if it took longer. Thinking that we had at least 8 hours to beat the stress, Matt and I went for a run. Jogging around the bend at the far end of Tooting Bec Common, the phone rings.....Felix is in recovery after only 2 hours!  As Matt and I sprinted through the doors at St. Georges, we ran huffing and puffing straight into Felix's surgeon who said "it could not have gone better, the tumour was completely encased, there was no viable neuroblastoma and I was able to remove 100% of it."  After a massive group hug, Felix slowly woke up, checked out the enormous cut to his tummy and announced he was starving. Recovery went from strength to strength from there, slowly sitting up and then finally standing. Four days after surgery, we asked the doctor when we should expect to go home. He replied that once Felix is walking around and has a poo, we can leave. Matt and I walked across the hallway to make a cup of tea and came back to an empty bed. There was Felix sitting on the toilet, we were home safe and sound within a couple hours.

After this, we enjoyed a whopping 9 sleeps at home before doing what we're doing now, which is internal radiation. Although the trace amount in his skull may already be gone, we are taking the belt and braces route and blasting it in a different way than chemotherapy.  A couple hours ago, Felix was injected with a radioactive substance which is now spreading throughout his body. If the substance detects a cancer cell, it attaches itself to it and attacks it specifically, so this is a much more targeted therapy versus chemo. The downside of this is that Felix is highly radioactive and we can have very, very little contact with him until he wees it out of his system which can take up to 10 days. We are talking to him through a leaded glass wall and instructing him on how to work the remote controls for his bed etc.  He of course thinks this is completely fantastic; lying around in one spot all day, food on demand, and mummy can't even come in and pry the Nintendo DS out of his hands. Fun now, we'll see after 9 more days!!

The plan ahead for us is get this bit done by Feb 13th (hopefully) then get away for 4 nights at a country cottage before starting high dose chemotherapy on Feb 21st. This is by far, the most gruelling part of the entire treatment plan. He will be given six days of the most intense chemo which is intended to strip his body to zero. On March 1st his own stem cells (that we collected in mid Jan) are transplanted back inside him to rescue him.  While we wait for his count to slowly recover, we are told that Felix will be 'poorly'. Poorly..... A word we have never used to describe or even vaguely associate with Felix over the past year, or ever for that matter.

Felix continues, now more than ever, to amaze and inspire us.  We've successfully ticked two big boxes over the past month with the fantastic stem cell harvest and surgery. We now have a couple more big boxes to tick before we can get this little boy back at home full time where he belongs, kicking around with his brother and sister. In the meantime, the love and support that continues to surround us is palpable. Thank you for all your prayers, encouragement and practical support. Matt now pipes on and on about how we eat way nicer food at hospital than at home. My cooking is obviously not up to the standard of the yummy care packages we bring with us here.  What will we ever do when Felix is cured????

Actually, I know exactly what we'll do.  We'll remember the most important thing he's taught us.......the gift of true and complete love in the present moment.

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

21st December 2009.

Felix finished his 17th round of chemotherapy today; it has now been 10 months since we were diagnosed. All the snow that fell a couple days ago took us straight back to the first day we became aware that something was remotely wrong with Felix. We were with friends at Hove Park in late January when Felix asked us to please stop making him laugh because it was hurting his back. He and we laughed even harder. This feels like yesterday, and a lifetime ago...... all at the same time.

However, this will change in mid January. On January 13th we will try to harvest Felix's stem cells using a drug to help stimulate his bone marrow. After so much chemotherapy, it would be highly unlikely that his body could produce the millions of stem cells we need without some help. As soon as this is complete, he moves straight into surgery on Jan 20th to remove the primary tumour on his right adrenal gland. This is a lengthy and complicated procedure which Felix will need one to three weeks recovery.

After this we go backup to London for a radioactive scan to target the now EXTREMELY small 'spread spot' on his skull vault. Like our other mibg scans, Felix gets an injection of radioactive fluid which attaches itself to cancer cells and enables them to 'light up' on the scan. However, the new injection we will have will have a radioactive component which attaches itself to the cancer cells and then attacks them. Our hopes are that this mibg procedure as well as the photodynamic therapy we will have over the Christmas holidays will completely eradicate this little spot and give us a clear mibg scan before going into high dose chemotherapy and transplant. High dose and transplant are actually the most intense part of the whole treatment when chemicals basically flood his system with the intention of removing any lurking neurblastoma cells that we can't see. Then, his own stem cells (that we harvested in mid Jan) are put back into him. As we have had no prolonged stays in hospital so far, we should expect to be in hostpial for at least a month, around mid Marchish.

Building Felix up over the next month in preparation for surgery, high dose and transplant is crucial. Thankfully his appetite remains strong and healthy and his energy is extraordinary. Also amazingly, Felix has had no coughs, colds or any sickness at all since this all began. We really need to keep this going, especially now. Lots and lots of turkey and stuffing this Christmas for Felix!  Grace, Elliot and Felix continue to play like crazy, business as usual. We will start preparing them for what's ahead after Christmas.   

Since the appeal began in May, over £95,000 (approx $165,000 Cdn) has been raised. In fact, Matt and some of our local friends have organised a fundraiser for Christmas Day!  About 30 of us are leaping into the sea at 11:30 on Christmas morning dressed as characters from the Nativity. Felix has also done some fundraising and neuroblastoma awareness building of his own. He has painted some beautiful pictures  (okay we're biased..) and we had 2000 cards printed a couple weeks ago. We slightly underestimated demand as there are now only only 33 packs left but we'll do some more in the new year.

And finally, we would like to say a big thank you to everyone who has supported, thought, prayed, cried, laughed, ran, walked, fundraised, played, talked, listened, wrote, emailed whatever. We believe that there is something amazing happening with Felix and the energy surrounding him, from us and from you, is a key part of this journey.

We wish you a VERY MERRY CHRISTMAS AND A HAPPY, HEALTHY NEW YEAR!!!

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

CLICK HERE FOR A SPECIAL CHRISTMAS MESSAGE FROM THE WHOLE FAMILY!!

18th October 2009.

22nd August 2009.

Felix had his scan yesterday and was again amazing! We lay him down on the huge machine, tucked his 'muso' under his ear and said 'shhh shh' and he pretty much immediately (well, after singing two verses of Abba's Chiquitita!) fell  fast asleep for 1.5 hours. As a result the team got a very clear picture of what exactly is going on inside him. Unfortunately the spot on the back of his skull is proving tricky to get rid of. The good news is that the last two rounds of TVD have made it smaller and fainter but we are not ready to move to surgery. Again, we could rely on stem cell transplant to wipe it out but we're all focussed on the end game, which is to make sure Felix lives until he's 95!

This is not the news we were praying for but it is not really bad news either. The area IS responding (not growing or spreading!) and Felix again shocked everyone by sailing through the last two rounds with NO side effects whatsoever and maintaining his body weight (in fact his appetite at the moment is through the roof....we can't make homemade beef burgers fast enough!). Hence, we've enjoyed a nice summer so far and even managed to have a couple nights at a lovely hotel in July and last week savoured 4 whole sleeps at a beautiful little cottage in the countryside. On Wednesday we also had the very special treat of visiting Hanger 6 at Gatwick Airport where we cruised around the runway in an enormous emergency fire engine with the sirens blaring, lights flashing, spraying the water hose for miles and rummaging around the 'fifteen hundred and ten' (quoted by Felix) buttons and switches in the cockpit of a huge Boeing 777.

The boys are due to start school on September 16th. If Felix's blood counts are high enough, he will be able to start with Elliot and feel apart of the initial bit of big boy's school which is great news. However, he is only 4 year old and if he misses the first few months or a bit longer of school, this is obviously insignificant. The boys will be in separate classes and Elliot will continue making friends and building his own individuality, which is something we've always actively encouraged, ever since they were babies. We had a great meeting at the school in July with the social workers, community nurse, both of the boy's reception teachers and teaching assistants and the head teacher. Everyone was so committed to getting it right for both boys and getting
us through this tricky time positively.

Felix will have an echocardiogram to ensure his heart is still functioning at 100% before we start the next 2 rounds next Monday. Next scan will be in early October. We know what we're dealing with, Felix is super strong, happier than ever and getting on with his fun life. We know that good things are worth waiting for. Please pray/hope/meditate/wish/envision/yell/dream that these last two rounds clearly and strongly wash away any little bit left and Felix's little body doesn't have to continue fighting so hard. 

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

13th July 2009.

We will let you know the results of the next scans in mid August. In the meantime, please can we all focus all positive spiritual energy, vibes, prayer, meditation, light onto the back of Felix’s  skull. This little fighter fully deserves the green light to take on the next step of this battle. He is up for it and so are we!

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

11th May 2009.

On Friday we received the results from Felix’s phase 1 treatment. Firstly, the really great news:

His bone marrow is 100% clear of any cancer cells, his spine is now clear of cancer (this was originally thought to be our trickiest spot to tackle) and the tumour itself has responded to the treatment and is ready to be taken out.  Other great news is that Felix is now off Cisplatin (for good!), which is the chemical responsible for hearing loss and his hearing has been completely unaffected. His kidneys, liver and heart have also been completely unaffected by the chemicals so far  (which is unusual for kids at this stage of his aggressive protocol) and he continues to be pain, sickness, mouth ulcer-free!

Now for the not so great news. There are still 2 traces of cancer in his skull vault which means we are not ready to proceed to surgery to remove the tumour. These spots were caused by the spread from the bone marrow and do not affect his brain in any way. Although this area has responded to the chemotherapy so far, the team have moved him on to two different types of drugs (which we started today) in the hopes that they sweep these two spots up faster. This means a new regime for us whereby we receive a smaller dose every day this week of one drug and then stay in hospital for 3 days this weekend to receive a different one. After this, we give his body 2-3 weeks to recover and then repeat the 7 day regime again, give his body time to recover, then see if the new chemotherapy has done its job. One of the drugs causes mucositis (mouth and digestive track ulcers) in 100% of cases so we are bracing ourselves for a more difficult month ahead. As these are also new drugs for Felix, we are worried about all the other side affects that will impact his appetite and overall happiness. This is not the news we were hoping for, but we now accept it only as a 6 week time delay in our journey.

Unfortunately, this also means that Felix will be in hospital for the Heroes Run in Brighton which our friends have organised for this Sunday. Ironically, his new Power Ranger costume arrived yesterday but we know he’ll love watching the video of the event. Matt, Grace and Elliot will be holding up the White Power Ranger team and all of the ‘Felix’ runners will be given a yellow balloon so he can see who they are on the video.

We strongly believe in spiritual energy and know that it is working throughout Felix and in us. We will be focussing all our energy on these two remaining spots over the next six weeks and hope and pray that he will be ready for the next step of the journey.

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

5th May 2009.

4th April 2009.

Since our diagnosis, we have felt so incredibly supported. I can’t remember the last time I cooked a meal and our children are being spoiled rotten with lovely gifts and special attention. Matt and I feel so blessed to have such amazing families and friends holding us throughout this unbelievably challenging time. If all goes according to plan, we finish phase 1 chemo on May 2, surgery to remove the tumour during first week of June (with a 1-3 week recovery), stem cell transplant in July followed by radiotherapy in August.   We have such strong hope for our little boy. We ask that you continue to focus your spiritual energy on the good power ranger cells fighting the ‘baddies’ (Felix speak). So far, we are winning.

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

28th Feb 2009.