We've had some ups and downs since our last scan in October. Before getting into the details of this, it must be said that Felix has had NO ups and downs in himself. In fact, it's been all up!!  The kids had a fantastic Halloween, the boy's turned 5 (!) on November 15th savouring every minute of their  'Star Wars, Pirate' party (battle of the light sabres versus cutlasses), lots of kid's parties from school and also a couple at the Royal Marsden with special guests from cbeebies. Felix loved being the Innkeeper at his Christmas performance at school, in fact he loves school period and all his new friends. Surprisingly, he has only missed 4 mornings since he started in September.

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.

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. 

Over the past 2 months Felix has had two pretty intense rounds of chemotherapy in hopes of clearing the 2 spread areas in his skull vault. The first round was tough for us all as for the first time since our diagnosis in Feb, Felix experienced pain. This was in the form of mucositis or mouth ulcers, which occur in 100% of cases 5-6 days after the drug Doxorubicin. As a result Felix couldn’t eat for 5 days and we found the whole experience extremely stressful. We were much more prepared for the second round and we were able to pre-empt potential pain with low doses of morphine, and importantly added stronger doses of a homeopathic compound to the mix. Felix managed to pretty much avoid any mucositis whatsoever, his blood counts recovered within days, and he has been on SUPER STRONG form since mid June.

We had our MIBG scan last Thurs (July 2) followed by an MRI scan on Friday (July 3). Amazingly Felix managed to do both with no general aesthetic. This is quite an achievement considering the MIBG is an intimidating full body camera panel which lies 3mm above the body for 1.5 hours during which you can not move a muscle. Astonishingly, the next day he managed to fall fast asleep during the MRI scan which is basically like banging around in a huge very noisy washing machine, again not moving a muscle. Not bad for our little four year old energy ball.

On Friday close of play, we received the news that the spot at the front of his skull is now gone (!) but unfortunately there is still a trace amount on the back of his skull. What this means is two more rounds (7-8 weeks) of the same chemotherapy we’ve just done in the hopes that the last spot disappears. In the past (even 3 years ago), despite the bit on the back of his skull, Felix would have moved full speed into surgery and stem cell transplant in the hopes that the high dose chemo before stem cell would clear it up. They know now that if they clear it up now before stem cell transplant, the chances of him being alive when he is 95 years old is much greater.  The weird thing is that Matt and I know Felix is strong enough to handle this, even though this is obviously not the news we were hoping and praying for.  After the news on Friday we drove straight to the coast, jumped on a ferry and spent 4 days on the Isle of Wight. Just what we needed to get our heads around the news and the next step of this journey.

Bizarrely, our journey over the past almost 5 months (!) has been very intense but wonderful and happy.  This is down to the amazingly inspiring energy which Felix continues to have, despite all the aggressive chemotherapy. If we can stay focussed on the present moment and not let our fears and anxiety of what may or may not happen in the future get the better of us, each day brings us so much joy. I think we’ve become pretty good at spring boarding ourselves back into ‘the moment’. Grace and Elliot play a massive role in this. Elliot and Felix are in fits of belly laughs and usual thuggery within minutes of being reunited. Grace has been loving, nurturing and bags of fun for us all . We are so proud with how they have taken this on board.

Another very special moment for us was the ‘Heroes Run’ in Brighton last month. What a day!!! We had an incredible time with over 120 runners kitted out as superheroes on our team, not to mention the countless supporters cheering us on. Our team won the trophy for biggest team and we managed to raise over £20,000!!! Thank you to all that came, supported or sent kind wishes.

Felix has just completed his last round of phase 1 chemotherapy. During this last round, he also had a bone marrow biopsy and catscan. This Friday May 8th,  he will his big MIBG test to determine whether the trace amount of cancer on the top of his skull has gone. That afternoon, Matt and I will meet with our consultants with all of the results for the various tests to discuss whether Felix is ready to proceed to surgery or whether we need to do more chemotherapy. Obviously, we are hoping and praying that we can move forward but we have been told that if we need to do more treatment, this does not impact his long term prognosis it just means a time delay of hopefully just a few months with more treatment.  He has pretty much sailed through these 80 days of chemotherapy and continues to amaze and inspire us with his humour, energy and all around coolness.

Love Matt, Colleen, Grace, Felix and Elliot XXXXX

Felix is now on Day 43 of our 80 chemotherapy treatment, so we’re just over half way through phase 1 of his protocol and….. HE IS ON MAGNIFICENT FORM!  His strong and amazing spirit and energy levels are awe-inspiring. So far he has experienced no pain, nausea, constipation, diarrhoea,  weight loss, fatigue or any sign of infection,  in fact with the exception of lots of visits to the ‘hostible’, it’s very much business as usual, with the added bonus of lots of mummy and daddy time. 

This was a big week for us with lots of tests, biopsies and scans to check if and how Felix’s body has responded to the chemotherapy so far. On Wednesday we received our first great piece of news that Felix’s bone marrow is now clear of any cancer cells. Yesterday afternoon, we found out that the primary tumour in his adrenal gland has reduced by 50%! On a smaller scale, yesterday morning Felix also had a ‘perfect’ hearing test (we were told that his high pitch hearing will be severely impaired as a result of his chemo). Despite the promising news, our protocol stays on its intended track as the terrible thing about neuroblastoma is it is ‘glue-like’ and reoccurrence rates are very high, so every precaution must be taken. Matt and I are very consciously banking all of his positive energy from the last six weeks because we know we’ll need to ‘borrow’ from it over the coming months.   

We are now pretty much into the rhythm of our new journey. We travel an hour to the Royal Marsden Hospital every 10 days for 2 ½ days of chemo. Matt and I actually relish going to our hospital because it’s really fun hanging out with Felix, it’s such a positive environment where we are in contact with many inspiring kids and their parents, but most importantly, we know that things are getting done for him and we are moving closer to our endgame. On the days we are not in hospital, a community nurse comes to our house and oddly enough, on these days, life seems very normal with Grace, Felix and Elliot playing together with the same energy and gusto they always have.

On Valentines Day our little Felix was diagnosed with a very rare and aggressive form of childhood cancer called Neuroblastoma. He started complaining over ‘back hurt’ about two weeks before,  it came in short and infrequent waves then progressed to a limp in his left leg. The tumour is slow growing and large (8cmX8cm) and stems from the adrenal gland in his abdomen, we also know it has spread to his spine (hence the recent ‘back hurt’) and his bone marrow.

In the span of minutes our lives have been turned upside down and sideways, but you only need to take one look at Felix to get all the strength you need to get through the day.

His treatment is high risk and aggressive consisting of chemotherapy every 10 days for 70 days, surgery to remove the tumour, stem cell transplant, radiotherapy, high dose chemo and immunotherapy. We are also augmenting this treatment with some more holistic approaches to do whatever we possibly can keep his immune system and liver strong enough to withstand all the chemicals. We were told that kids often get very sick (throwing up, diarrhoea, loss of appetite) after treatments but so far Felix is showing his strength sailing through the first two rounds of chemo with smiles even saying thank-you to the nurses when they come in to take blood, take his temperature or do his blood pressure.  The fact that he looks so well (attached are some pictures taken this week) is great but also heartbreaking for Matt and I as we know that this treatment will strip him down to his absolute bare essentials before it builds him up again.  We are terrified about what is in store for him throughout the treatment but we are completely focussed on giving him 100% of our love and support to ensure that this fXXXing thing gets out of him.

Since this started (has it only been just over 2 weeks????), Grace has been handling it well.  With the exception of after school today when we had to tell her that her adored kitten Ziggy, needs to take a ‘cat holiday’ from our house for a while. Ziggy adores the kids and is constantly licking them and with Felix’s treatment we can’t take any risks of him getting a serious infection. I think despite being heartbroken, she gets it.

Elliot on the other hand, is showing signs of missing his best friend, twin and partner in crime when we’ve been up at the Royal Marsden so much. Matt and I will make every effort to take Elliot up with us (and Grace) when we can as we suspect ultimately these two little guys who are amazingly tight,  will be each other’s key ingredient in getting through what we are about to go through.

Family, friends, church and school have been amazingly supportive. Our friends and neighbours, Martin (who baptised the boys) and Sally have started a prayer group on Sunday mornings from 8-8:30. Matt and I will try to be there when we can as well as our wonderful St. Andrew’s church community.  I know that there are other prayer groups going on in here in England, Canada and New Zealand. We are so grateful and ask that you hold our fantastic little boy in your prayers.

Love Colleen, Matt, Grace, Felix, Elliot (and Ziggy) xxxxx