Skye has continued to make steady progress over the past few days, and on Monday was able to leave his room for the 1st time in 4 weeks. Once he was in the playroom next door doing yet more arts and crafts, he was pretty reluctant to go back to his confines, but that is undoubtedly a good sign. His medical team are constantly reviewing his situation and amending his drugs as part of his preparation for going home. Drugs are being transferred from IV infusions to Oral, but obviously this demands that his stomach is able to cope with these.

We have seen the return of the Naso-Gastric Tube (in more ways than one), which went in on Friday night with much bargaining on our part and much pleading on Skye's part. He was adamant that he didn't need it and promised us that he would eat properly. He was so eloquent and knew exactly what was going on. I think it almost broke poor Natalie, his nurse, as he used her first name when pleading. It took 3 nurses and Sally to hold him still to get it in. Daddy is too soft for that sort of thing - I just stood and watched! Sally ended up getting the giggles at one stage, it was amazing to see his logic being verbalised and his sheer physical strength after all that he has been through in recent weeks. Once it was in - he settled really quickly and then spent the next 45 minutes connecting up all the pipes and tubes to the pump and feeding bottle. Remembering exactly how all the apparatus fitted together. The replacement bottle for the next day, he insisted on cuddling overnight like a teddy bear!

Unfortunately, he vomited the tube up on Sunday night, so we had the trauma of having to get it back in again. He insisted that Natalie do it, but unfortunately Natalie wasn't on shift. "NO, Natalie's doing it!" and when we tried to explain that Natalie wasn't around, his response was simply "Well, we'll just have to wait until tomorrow". Katie got the short straw, who had ironically been given a badge earlier made by Skye for being the slowest at getting NG tubes in! She did really well, it was in pretty quickly!

He forgets nothing! Which is a little worrying - as tonight he was fiddling with my hair saying, "Daddy, this bit is getting long", "Yes, I suppose it is", I said anxiously as I feared what might be going through his mind. "Daddy, can I cut your hair tomorrow?" "Ummmmm.......yes, if that is what you want to do!" Who am I to say no! Hopefully I can get away with having a comb on this time round, but if not, who cares! How Sally has coped with being cooped up in a tiny room for the past 4 weeks, I have no idea, let alone coping with complete sleep deprivation. She has been truly remarkable.

A home-coming looked imminent, but Skye threw up his tube again tonight, which casts an element of doubt on getting him home. He is obviously feeling better within himself, because he was also chatting this evening about wanting to go to my school and play hockey. So brave! Possibly prompted by the fact that he has had a set of my umpiring cards which he has been dishing out to unsuspecting nursing staff and of course Sally and I. It was quite useful getting yellow cards at the same time so we had to retreat to the ante-room where we actually had a chance to chat to each other.

Skye was due to have an MRI tomorrow, but he is not well enough to have a GA, so it has been postponed to the 1st of April. The outcome will dictate whether we continue with the next round of High Dose or change tack, so yet another critical marker in his treatment plan.

We were grateful to get last week out of the way. Over the weekend, Skye turned a corner and bar a couple of dips during the week, he has been vastly improved. They have started reducing his medications which has caused a little 'cold turkey', but his neutrophils continue to move in the right direction and his Red Blood Cells are stable. His platelets still disappear at a rate of knots and they keep infusing. If any of you are comfortable with needles, it would be worth considering being a platelet donor. The procedure takes slightly longer than blood donation, but you can give more regularly because the red blood is returned to your body during the process.

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Jesse has been in to see Skye on a number of occasions this week. Because Skye's lips had completely broken down, when they managed to get the platelets in balance, each lip became one big scab. Skye was constantly having to moisten them with little 'sponge lollies' which, because of Skye's black lips, Jesse thought were chocolate lollies. He obviously wanted one as well. There was a fairly lengthy conversation, which Sally managed to capture the back end of. It was great to see Skye giggling again last night as we trawled through the Where's Wally books. It was the sunburnt people on the beach who looked as though they had tomato ketchup all over them that caused the most hilarity. It was heart warming to see. 

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I seem to be acceptable company again after a mini near-disaster on Tuesday evening. Skye asked me to move him from Sally's bed back to his. I checked that the stand was in the appropriate place so that when he was moved, the pipes, 4 of them, wouldn't over stretch and wouldn't pull. The move went fairly successfully apart from the fact that One of the pipes got caught on my shoe. I lifted up said foot to release the pipe only to lose balance, but couldn't put my foot down because the other 3 pipes were dangling underneath. What makes this such a catastrophe, is that the pipes lead directly to his chest and then straight into his heart, if you pull on these, then a great deal of pain is inflicted and you have the horrible possible consequence of pulling the Hickman Line right out and having to go into surgery to get the pipes replaced. I reached out to steady myself on the bathroom door, only to place my hand on Skye's posters, which gave way and my hand slid straight across the door ripping all the posters off, so I grabbed at the stand, only to miss the stand and grab one of the medications that was dangling from the stand and pulled the pipes straight out of that.

It was a complete mess, I got screamed at by Skye and Sally and was ordered out of the room, quite rightly, very sheepish and tail between my legs while Sally and the nurses cleaned up the chaos. We can laugh about clumsy daddy now, but it was no laughing matter at the time and potentially a complete nightmare.

There are times, when Skye is sitting chatting to us, that a horrible sense of normality prevails. He has now started to ask when he can go home, which is a good sign that he is on the mend. Before that can happen they need to wean him off the TPN and get other regular nutrition into him. We wait and see. 3 and a half weeks has flown by in some ways and in others it seems like an eternity. Our target is to get him home on or around the 4 week mark, which is Wed 12th.

I thought it would be useful to update you on Sally's situation as it is. Skye is in isolation as you know, with an en suite and an ante-room. This is so that his room can be pressurised so that when doors are opened, air flow is out and not in, to protect him from infection. From an infection point of view we should be over the most critical period as it looks as if his stem cells have taken and his last blood count showed a sign of the all important neutrophils!

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When Sally is here on her own, it is nigh impossible for her to leave the room, even to get herself a cup of tea, etc. Fortunately, she has her own fridge in the ante-room and Diana and I have been ferrying meals in for her, which are much appreciated. Skye's situation demands her care 24/7, literally! He needs assistance to rid his mouth of a profuse gluey saliva, if this doesn't happen immediately, he starts to choke and panic and his heart rate rockets, as does his blood pressure. This happens about every 5 minutes during the day and 15-20 minute intervals at night. As you can imagine, this is an exhausting process for Sally.

Tonight they have relaxed the 1 parent rule for us so that I can be here so that Sally can try and get some sleep. She is at least lying down and pretending to sleep, while I jump up and down to tend to his nose or mouth or head or anything else that is causing him distress. He is now having frequent nosebleeds which obviously struggle to clot and we need to be very watchful and act quickly when they occur.

Today he has been diagnosed with vascular occlusion disease of the liver caused by bleeding within, from the destruction of the cells. This means that his body is chewing up platelets to try and stop the bleeding. Each time they infuse platelets, they rise and immediately fall again. They are now taking full blood samples every 12 hrs to monitor the levels and keep a watchful eye. Due to his lack of platelets, his broken down tissues around his mouth, refused to clot, and were just a constant source of bleeding this morning, trying to manage that situation was extremely difficult. They have crusted over now but are in delicate balance.

Vomiting blood is understandably distressing for Skye to see and he broke Sally's heart this morning when he said "I am not really very happy at the moment" coupled with silent tears. Skye is on 10 different drugs in any given 24 hour period with 22 different infusions, which are often simultaneously administered. Each time a drug finishes infusing the buzzer beeps and you have to call the nurse, but each one also gives a 3 minute warning buzzer which needs to be silenced. He is also on a constant infusion of oxycodone and a bag of nutrition. Each infusion is followed by a flush through his pipes, which makes for a very busy day. Not surprisingly he has a nurse assigned, whose sole task during the day is to administer his drugs.

In between all that Sally has to find time to prepare the swabs with moisturiser, ensure that there is cold water on standby to keep him cool, adjust the fans to his requirement and do all the other bits and pieces that are part of everyday life. He is on diuretics to rid him of excess fluid, which clearly has management consequences. The nurse is currently swapping over the drugs, and infusing yet another bag of platelets, having got on top of the most recent nosebleed, machines beeping, pipes being clipped, others being opened, setting the flow rates, not forgetting taking his temp and blood pressure etc.

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395826840357-4TLUC97H8X0I7P9ISE9E/image-asset.jpeg" alt="Despite everything, he continues to be brave, and see the positive side of life!" />

Despite everything, he continues to be brave, and see the positive side of life!

What has made things even trickier, is that wifi and internet have been sporadic to say the least, and there is no mobile phone reception, so there is a severe lack of communication with the outside world. Tonight is a rare occurrence of wifi reception being good, presumably because everyone else is asleep! Do send Sally the odd email. A bit of news of the outside world and a bit of friendly banter would go down well. It is pointless sending text messages, as she can't receive them.

“I am not really very happy at the moment”

It has been two weeks since Skye started his High Dose Chemo. He remains in isolation on Kamran's Ward, with very close monitoring from the medical team. Putting it bluntly, this has been a traumatic phase of treatment. What Sally and Skye have been through, and are still going through, is pretty nasty. Seeing him huddled on the bed in foetal position, not really wanting to move, is soul destroying. At other times, which we think is quite positive, he demonstrates his fighting spirit by bellowing at anyone in his room, even if they haven't caused him any offence. Or is standing in front of his fan an offence? Probably!

Today, he has had a number of nose bleeds and we think, in the throat, but it is difficult to tell where it is coming from. ENT consultants were called in to assess due to the severity of them. He requires constant assistance with copious quantities of mucous and saliva, which literally pours out of his mouth. Because of all the mopping up, his lips and face are breaking down and keeping these moist and in decent condition is a real challenge. The change over the past few days has been noticeable. He is in a lot of pain, and they have moved him from Morphine onto Oxycodone (fewer side effects but more expensive), which we are able to administer at the click of a button. On the positive side of things, he looks as though he has been on holiday in the Caribbean for a month. His skin has gone a dark brown, and no he is not dirty! His bathing routine has changed from 4 times a day, down to two, which is much easier. Unplugging the machines and wheeling everything through to his en suite so that we can wash him, Sally has got down to a fine art.

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He is incredibly weak, and cannot now stand unsupported, but he has his daily exercises which he has to do in bed to keep his musculature in as decent a shape as we can. He has a sticker chart for everything from mouth cleansing to bathing to physio exercises. This morning, he was on good form (all relative), and managed to make badges for the doctors on ward round, (lasting about 10 minutes), but it was just afterwards that things started deteriorating. Dad has learnt how to work a Wii console, whilst Skye is just happy to lie and watch as I hack my way around the mountains as Indiana Jones. It keeps him distracted for small periods of time, which is better than nothing. Over the weekend, he was having a go, and doing really well, but he just doesn't have the energy now. It is hard to believe that 3 relatively short infusions of Thiotepa on the 12th, 13th and 14th of Feb have caused this much damage. Since then, it has all been about recovery. He has had transfusions of blood, platelets, and the all important stem cells, along with a host of antibiotics and other drugs. For the first time today, there was a hint of recovery from his neutrophils, and we hope that this continues to be the case in the coming days. He has a long way to go before we can consider thinking of home, so for now we simply wait and see. There have been challenges over the past two weeks, which are not appropriate to put into writing, which have demanded enormous strength of character and resources, particularly from Sally. It has been a vile experience. Other parents who have been through High Dose, talk about the 'horrors of high dose', and they are not wrong. When Skye stops bellowing and in a quiet, begging voice starts saying please and thank you, you know things are pretty tough for him. As ever, we are incredibly proud of him for enduring such suffering, and we hope and pray that this is indeed doing what it is supposed to be doing. To go through this for no reward, would be heartbreaking. We fight on!

Researchers are making progress on a new approach to tackling brain tumours, which means an operation may not be necessary. Susan Short, professor of neuro-oncology at the University of Leeds, and Ed Jones, who was diagnosed with a terminal brain tumour in May 2012, discuss.

listen to ‘'New ideas' for treating brain tumours’ on Audioboo

Happy Valentine's Day (for yesterday)! Skye spent the day before baking cookies for his girlfriends, and mommy and daddy of course.

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In house baking at its best!

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The finished product - yum!

I am not sure that I can say that Sally had a happy day, but such is life. Her day started at 1.30am when Skye vomited up his naso-gastric (NG) tube. The last update seems like a lifetime ago and so much has happened since. Skye recovered from his shingles and came home on Friday the 31st January with NG tube in place, making daily life a little more bearable from a feeding perspective. He quite likes the idea of more gadgetry. When he goes out he has to pack his rucksack which special compartments for each of the items, pump, food, spare tubes, holes for tubes to go through, taps in the tubes

 to feed medicine through etc. Great fun! It is slightly complicated if he vomits, as the tubes come out of his mouth. It looks quite cool with it going into the nose and out of the mouth. Sally and Skye had hilarious conversation as to why the tube couldn't then be pulled out of his mouth, rather than feeding it back through his nose. The gist of it was that the pump, and stand would have to follow suit. Skye thought this incredibly funny as he imagined the pump and the stand being pulled through his nose and out of his mouth.

In the week and a half that Skye was at home he has attended school twice, which did wonders for his confidence. Unfortunately his daddy is not a very good role model in that he wears a tracksuit to school. Skye therefore, not used to seeing people in ties, insisted on having his tie on the outside of his jumper. Top button undone, shirt hanging out and tie outside of his jumper. Not quite what Sally and I had in mind! But the subject of lots of laughter - which is good!

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An improved look for School visit number two!

Skye has also taken to dancing again, and the two boys put on a fab show on Monday night, dancing to the 'Recycling Song'. I am sure you all know it. "Go recycling you're burning up the quarter mile, recycling, go recycling". At first there was a lot of head scratching trying to work out what the recycling song was that Jesse was asking for. And, of course, when Grease Lightning came on in Sally's car - the penny dropped, as Jesse shouted, "yes, this one, recycling song". Clearly well educated boys!

In between all of this we have had to sign consent forms for the next round of Chemo which started on Wednesday. Harrowing, when once again, the list of side effects is less than appealing. The worst of which is fatal toxicity. The Thiotepa effectively strips him out and then they start rebuilding with stem cells. Infuse the new cells too early and the drugs wipe them out, wait too long and he is too vulnerable. This along with potential organ failure, makes the current treatment a tricky one to get our heads around. He is in an isolation room, with an en suite, and has to bath 4 times a day to try and keep his skin clear of infection. Yesterday, his temperature spiked at 38.5 so we have lost the battle to infection already and he is now on antibiotics to assist recovery. Unfortunately the worst of it is still to come. Sally is being amazing as always. Thank you for all the input on the Charity name, we are in the final decision phase and have already built the website, which is almost ready to go live. Soon after that will come Twitter and Facebook. Thank you all for your ongoing support. Quick request from Sally - Skye has a Playstation 3 in his room but all the games are shooting and football and a little advanced. If anyone has any playstation 3 games appropriate for 4-5 yr olds (2nd hand) they would be gratefully received.

“I went travelling with my mummy and daddy and my brother Jesse. We lived in a camper van for a while, it was such fun.”

Life never stands still and one day very quickly turns into another and we never seem to have achieved an awful amount. Especially this week, with Skye being back in hospital. Sally has been a little bored so I know has been pinging out emails. Skye has picked up a nasty infection which the Drs couldn't get to the bottom of. Last week, he was put on antibiotics to clear infection that was brewing on the back of his oral ulcers, but on Sunday things suddenly got worse and he had to be syringe fed, and only managed a total of 250ml during his waking hours. His favourite pin (aka injection) nurse popped round on Monday to check his bloods and sent him straight to hospital, and he has been there ever since. Not that we hadn't tried to contact the hospital on Sunday! We spoke to the nurses on the ward twice asking to speak to the on call doctor for advice, but they had not had a chance to get back to us and by Monday things were a great deal worse. Anyway, even more justification to do what we are about to do! On the back of a conversation Sally had with David Cameron, when he visited the ward, and conversations with our Consultants, we are about to launch a Charity to fund research into the treatment of Medulloblastomas. Just because we are bored and have nothing else to do ;-) Staff at the JR are working under real pressure and we are seeking to try and help there too. There is some really good research going on in Newcastle and there are no specific charities for Medulloblastoma and not a great deal of money available - so here goes. This is not a short term project for us, it will be a long term effort to assist where we can to develop the treatment modalities when dealing with Medulloblastomas. At the moment, treatment follows a particular protocol regardless. Within the classification of medulloblastoma, there are a range of different cells, which react to different things. With further research they will be able, hopefully, to individualise treatment for each patient, allowing for better outcomes! In layman's terms! Charity - Help Required! We are trying to come up with something catchy, but struggling because there are lots of big words to get in. Examples of what we are trying to do, bearing in mind that I do not consider myself to be a creative type, more of a practical type!

MAD FOR SKYE -Medulloblastoma Appeal Designed For Ongoing Research

SKYE TRAM - Treatment and Research Appeal for Medulloblastoma

SKYE SMART - Supporting Medulloblastoma Appeal for Research and Treatment

That sort of thing! Haven't had a chance to run thoughts past Sally yet, but we want it to have 'Skye' in it, and we need it to be broad enough so that at some stage if we wanted to give money to Kamran's Ward for equipment or UCLH Radiotherapy Department, the funds could justifiably be used for that. Hence Treatment as well as Research. Once we have a name we will set up the charity and start on the website design etc. Other words or letters: B , Trust, Fund, Exploration etc. No prize, just a big hug for the person who comes up with the 'eureka moment' or 'inspirational acronym'! Oh yes, they finally diagnosed shingles. He looks horrific, not going to share the photographs! They have him on additional morphine, antivirals, antibiotics, antifungals and IV nutrition. Having so many machines round his bed looks quite cool. Had the nurses confused last night, when we removed his HR monitor, because it was irritating him, and put it on me. Had the nurses jumping, when his HR dropped from steady 153 to not so steady 62. (Still in decent nick! Not really!) Unfortunately this probably means a delay to the start of his next course of chemo, which is less than perfect. Sally being amazing as usual.

At midday, Sally and I had an appointment to see Skye's Consultant to obtain the results of his lumbar puncture. For the first time in months, we have some good news. The spinal fluid is clear of live cells. There is evidence of debris, which is great, but no sign of any live cells. This is a great relief to say the least, and it makes decisions easier, in that we can forge ahead with treatment, rather than having to go back to the drawing board with our Consultant and start looking at a variety of options. As soon as Skye's blood recovers from Radiotherapy, he will start High Dose Thiotepa, with stem cell rescue. This is likely to be the 3rd of February, but possibly a week after that, depending on recovery. Obviously there are still a lot of unknowns! We know that cells that were evident within the SF are no longer there, but we don't know what is happening at the original tumour site, as well as at the peripheral sites around the brain where the tumour had metastasised. What we do know is that these sites are no longer shedding cells and disseminating them around the body, and therefore the assumption is, that their progress has, for the time being at least, been halted. We have been in discussion with both Dr Mark Gaze in London and our Oxford Consultant Sheila Lane about which charities would most benefit from our efforts. There is some specific research work going on in relation to Medulloblastoma and this is where we would like to focus future efforts. They are going to do some work on our behalf, chatting to their colleagues at the forefront of medulloblastoma research and give us guidance. Please do watch this space and start thinking of fundraising ideas!

It has been really good to be at home for the past week. I have been back at work, which is nice, and Sally has been a hero dealing with the boys at home. Skye's Consultant took the decision to perform a Lumbar Puncture to assess the situation following Radiotherapy, which came as a bit of a surprise to us as we had thought that his next assessment was to take place in March following High Dose Chemo. Watching him lose consciousness as he goes under anaesthetic is something I don't think I will ever get used to. There is that momentary glance of anxiety on his face as the anaesthetic starts to kick in, and fractions of a second later, his body goes limp. It is horrible to watch. The result of the LP will guide Skye's treatment in the coming months. If the Spinal Fluid is clear, then we progress to High Dose Thiotepa with Stem Cell rescue, replacing his own stem cells which were harvested back in September. Our Consultant has very clearly labelled this as 'nasty'! The chemo will strip out all his bone marrow and leave him incredibly vulnerable to infection. During this period of this treatment he will be in isolation. This is due to begin on the 3rd February. If there is evidence of tumour cells in the SF, then there is a great deal of debate to be had. If he has not responded to the upfront chemo, and he has not responded to the Radiotherapy, (which is seen as the key part of the treatment) there is a question as to whether it is worth putting him through High Dose, and how much is to be gained by doing this. We have today, discussed the options of various clinical trials if this should come to pass. It is soul destroying to think that Skye is going to have to be 'broken down' yet again. He is gaining in confidence on a daily basis, and because he is walking around the house and able to climb the stairs, albeit on all fours, he feels that he is better. Getting through the RT was a major milestone for him and he was in the garden on Saturday, on the swing, expecting to be able to do the things he used to do. It is incredibly difficult managing his expectations in so many ways. He is still struggling to eat due to mouth ulcers and a very sore throat, but we have managed to progress from noodles to sticky rice! We have a trip to UCLH on Wednesday for a follow up appointment, which we are all looking forward to. And after that we will sit and anxiously await results, which we should have by the end of the week.

Tonight we returned from London, after an exhausting but interesting, and hopefully constructive (time will tell) 5 weeks in London. There was an exhausting list of things to do, theatres to visit and sights to see! We did the London Eye on New Year's Eve, the cable car from the Docks to Greenwich, the O2 to see Dancing on Ice, the Phoenix Theatre to see Dinosaur Zoo (a real hit), and the Rainforest Cafe to name but a few. All this around a twice daily visit to the hospital for treatment. Jesse has been confined to a pushchair for a great deal of the time, but this was of no concern to him as long as he received his daily dose of 'underground train'. When alighting from the train, we had to wait on the platform to wave goodbye for fear of uncontrollable screaming if we did not. As the train departed, the wave was slow and methodical, but in rhythm with the train, as it sped up, Jesse's hand would increase in speed until it was a simple blur. Highly entertaining for mum, dad, Skye and for the ever glum Londoners, who couldn't help but raise a smile. Skye has shown real fortitude throughout, at times he has had to take up to 22 syringes of medication during a waking day. He found this both annoying and tedious and has often told us, that he doesn't need them. On a related topic of medication, I found myself in an awkward situation at the pharmacy yesterday when trying to purchase a very ordinary bottle of Calpol. The pharmacist went through the routine of asking whether he was on any other medication. I hesitated, and then replied, "Umm... other than Ranitidine, Morphine, Metaclopramide, Ondansetron, Antepsin, Septrin, and Dexamethasone, umm.... no!" After an uncomfortable silence, where she was clearly mulling things over, she smiled sweetly and handed over the Calpol. I have learnt my lesson and in future, I think a lie is a much easier solution. We have to see the funny side of things, and Skye has been an absolute gem, coming out with some great lines and we have had each other giggling away about some of the most inane things. Most recently his ongoing desire to eat noddles, no niddles, or is it noodles, has caused us hilarity. For the most part he has been on good form (relative to what he is going through), and when this horrible reality seems like normality, it seems just that, horribly normal. He continues to smile, but underneath it all, I often wonder what is really going through his mind, when he sits and watches Jesse dashing about or other children running around and leading normal lives. It is curious that he wants to re-live things he has done in the past, when he was able bodied. We cannot believe that 4 months have flown by since his diagnosis. We now have a month off treatment, but with the 'normal' monitoring of bloods, preparation for the next phase, and of course the ongoing short term side effects of his Radiotherapy. His mouth is currently littered with ulcers, he has mucositis of the throat, the dex continues to cause swelling and temperament issues, and he continues to survive on a diet of jelly and noodles (chicken super noodles ONLY)! We will be back down in London on the 15th January for a follow up appointment, and thereafter we will be back in the hands of the Oxford team. Sally continues to be her brilliant self, attending to Skye's every need, but also to those of the family. May we wish everyone, everything of the best for 2014. We hope that is a happy and fulfilling one for all of you.

“My favourite colour is green. I don’t know why – it just is! I have lots of friends and I love spending time with them.”

Anything which I attempt to write, will seem wholly inadequate in comparison to what Skye has undergone during the past few days. On Friday 29th Nov Sally and Skye travelled to London for a practice run under treatment conditions. It is fair to say that things did not go well, and it took some 3 and a half hours to get him onto the table and locked in position. Often masks become cold and can shrink slightly, when not worn regularly and this made things very uncomfortable for him and he just blankly refused, with hysterical screaming and lots of tears. He felt as though he couldn't breath and was a little bit panicked. As a result treatment was postponed on Monday to go through another practice run. His ability to stay still during the delivery of the radiation is imperative, and they cannot afford to spend 3 hours each day cajoling him into it. Twice daily general anaesthetic is the very unattractive alternative. Monday morning's practice run was touch and go, but eventually Sally and the Radio team managed to cajole, bribe, bargain him onto the table and complete the practice run. While the team were going through the motions of rotating the Linac (Linear Accelerator) around him as per treatment, phone calls were made to line up the anaesthetists for twice dailies because of how things had gone. Something clicked, and Skye became unbelievably brave. He lay rigid on the table with his thumb up to indicate to us that he was fine. For someone so little to be alone in an enormous room, lying on a cold hard carbon board, not being able to move or speak, with the Linac twisting around you has to be more than anyone his age should have to go through. It was enough to reduce us to tears, standing watching him on the cctv screens, dwarfed by the Linac in the cavernous room. We took a break from the hospital at lunch time and headed for Winter Wonderland in Hyde Park. He chose to go into the Toy Factory house of fun and again it reduced us to tears watching him determinedly making his way around. This was followed up by strawberries in melted chocolate, which he proceeded to drip all over his coat and Daddy's head. Probably unwise to have let him eat these while sitting on my shoulders. It was lovely to spend time with him, watching him take in all the different activities and for him to be chatting to us about what he wants to do do after each RT session. This had to be followed up by the 2nd practice run on Monday afternoon to do final checks and ensure that he was compliant. He was absolutely brilliant. Got onto the table, lay absolutely still (like the guards outside Buckingham Palace - aka the Queen's House, our Sunday outing, along with bowling), and behaved impeccably. The team were delighted and on the back of it, agreed for treatment to start yesterday morning without GA's. After a restless night for mom and dad, and Skye awake until 10pm because he was so excited about his new surroundings, he was on the table for the start of treatment at 9am. He requested Grease Lightning on looped play during his session, and he was the perfect patient. Lying still on the table while they positioned him, and delivered the treatment. Although you are only next door watching on the monitors, his little emaciated frame seems so far away and so vulnerable, next to the equipment. I can't begin to describe the pride which we feel, his bravery, fortitude and understanding of the whole experience. It is like watching a movie where they are about to initiate the launch of missiles as they double check co-ordinates and doses verbally before activating the beams by turning the key. We again headed off to Winter Wonderland for Skye's next treat on the bumper cars. We had the whole rink to ourselves, and Skye and I had great fun chasing mummy around and giving her a good nudge. After a stroll down Oxford Street and taking in the Selfridges Christmas window displays, it was back to hospital for round 2. Again, Skye settled into his mask and delivery of the radiation went smoothly. 2 down - 4 to go! The vomiting has unfortunately started and dealing with that is his next challenge. The exit rays from the spinal radiation are directly through the neck, lungs, heart, stomach and gut, and dealing with that is the next challenge. There will also be swelling of the brain, which will need to be controlled. How long he will feel up to doing activities each day remains to be seen, but he is being so strong and so brave. As is Sally, she has been remarkable through the whole process. Under the intense prolonged pressure she has engaged Skye, coaxed him, and succeeded in getting him onto the treatment table. Her strength throughout has been extraordinary to witness. We move forward one step at a time, in awe of Skye and what he is having to endure. He has endeared himself to the Radio team, giving them all nicknames, which he whispers in their ears. He is amongst 'friends' in the unit, who are taking very good care of him. We are so incredibly proud of him. He is very much treated as an individual and is not just another case. We are full of praise for their patience in allowing Sally to work with Skye and not rush to a GA decision. We hope and pray for a successful outcome.

On Friday, Skye was once again his plucky resilient self as he received a blood infusion, followed by a platelet infusion, followed by a GCSF injection, which was not adopted so readily as the first two, but is a necessary evil. Sally and I were also called in for the results of Skye's latest MRI scan. We hoped for the best and unfortunately received the worst. Skye's disease, is at best 'Stable', but there are elements where the disease has 'Progressed', notably in the spinal cord and around the outer edge of the brain. There is also an 'area of concern' around the resection site, where there is evidence of regrowth. The surgery went better than expected and total resection was achieved (by definition, this means more than 90% of the tumour), but chemotherapy has not had the desired effect. We applaud the surgeons and all the clinicians and support staff who have been involved in Skye's treatment thus far. The implications of this are, that the Radiotherapy will be adjusted to deliver higher dose during his treatment than originally planned in the hope that this will have an impact on the rogue cells. The impact of course is that this will take a tougher toll on Skye. This will be followed by High Dose Chemotherapy, which is myeloablative and will therefore destroy his bone marrow and leave him in a very vulnerable state. This will be followed by stem cell rescue and at the end of the first 6 week cycle they will perform another MRI scan. If there is no obvious response to this first cycle, they will discontinue treatment. Skye's surgeon was in attendance at the meeting, and we discussed the potential benefits of further surgery and the risks involved. It does not appear that this is a safe or viable option at this stage. This is by no means the end of our fight. Despite the fact that statistics are against us, there is still a chance that Skye, despite his apparent lack of response to the chemotherapy, will respond to the Radiotherapy, and there are cases to prove that this is possible. He will undergo another GA on Wednesday to perform a Lumbar Puncture to assess CSF and examine exactly what response has taken place during chemotherapy. Unfortunately, the human body has clever defences in place to protect the brain and spinal cord in the form of the blood-brain barrier, and in Skye's case this appears to have been ultra efficient and prevented the chemo drugs being effective, which seems a horrible thing to have put him through. Some children respond really well, some don't. We are now hoping that Skye is a super responder to Radiotherapy starting in London on the 2nd December. I have attached a photo of him in his mask, which immobilises him to the table for his treatment and has now been adorned with Spiderman transfers.

Today sees a milestone in Skye's current treatment. We have completed the first cycle of chemotherapy, which saw 4 treatments using 5 different drugs over an 11 week period. We are at the hospital yet again, this time to have an MRI scan to assess the progress of his disease. There are 4 possible outcomes to today's scan, the results of which could take up to a week to come through. In an ideal world they will find Complete Remission (CR), which will lead us onto maintenance chemotherapy starting on 3 February 2014, consisting of 6 x 9 week cycles through to February 2015. The other possibilities are Partial Remission (PR), Stable Disease (SD) or Progressive Disease (PD), each of which will lead us to High Dose Chemotherapy starting 3 February, and consists of 2 x 6 week cycles. It is clearly an anxious time for us, but there is a great deal going on to distract us, including a 2 year old who woke up at midnight saying, "Daddy, I'm lost". He was awake for the next three hours! Bless him. Skye was next, at 2.30am and regaled his dreams to Sally in great detail over the next 3 hours. A great night's sleep for all of us. We had to get up at 5.30am to be at the hospital for 7.30. Regardless of the outcome of the MRI, we move to London on 1st of December to start his Radiotherapy treatment, twice daily, 5 days a week, for 5 weeks. We have 'bigged' up London, by visiting Hamleys last week when he went for his preparatory CT scan at UCLH, as well as enticing him with bowling, London Eye, biggest Christmas tree in the country etc. He continues to be an absolute hero, getting braver with taking his GCSF injections (we do feel for the nurses), and making us laugh on a regular basis with his antics. His twice weekly home schooling sessions are going well and he is making a determined effort to walk on a daily basis. Thank you for all your continued thoughts, messages and prayers.

It has been a busy couple of weeks, in many ways due to the fact that since finishing his most recent round of chemo on the 21st of October, Skye has been on pretty good form. He has been nowhere near as sick, literally, as he has been after previous infusions and we have had the pleasure of his company at home, apart from a platelet infusion on Tuesday and a blood infusion today. It has really good to see him in such good spirits, apart from the regular bouts of frustration, which can be very tricky to manage. Sally and I have had some big decisions to make regarding Skye's treatment, and these have been particularly draining. Without boring everyone with the details; radiotherapy is the treatment that fills us with dread due to the long term side effects. This is scheduled to start on the 25th November, dependent on recovery after his next chemo. We had a very constructive meeting with a Consultant in London, who confirmed what we were leaning towards, which was opting for conventional radiotherapy rather than decamping to the States and receiving Proton Beam Therapy. This is a huge weight off our shoulders with the associated logistics and costs. Bottom Line: conventional radiotherapy is seen to be a slightly more effective therapy when dealing with high risk metastatic medulloblastoma. We have to bear in mind that we are fighting for Skye's survival, but at the same time being able to justify our treatment decisions to him years down the line. We believe that we have made the right decision. Skye performed admirably for the fitting of his radiotherapy mask, which gives us a great deal of confidence going forward, but a few uncertainties remained which we needed to get our heads around. Firstly, because of the nature of the treatment protocol (twice daily, 5 days a week for 5 weeks), this is an awfully long time for Skye to be lying absolutely still. If he starts treatment in Oxford and they have to resort to General Anaesthetic, this would mean a change of protocol to once daily treatments, which is not optimal. In London we could make a transition to twice daily GA's. Secondly, parents are not able to be in contact via speaker phone with the patient whilst undergoing therapy in Oxford but this is possible in London. We feel that for Skye, to optimise treatment in terms of the protocol and for his comfort if he suddenly needs vocal contact/support from either of us, that the only option for us is to undergo radiotherapy under the guidance of the team at UCLH. This has been a very hard decision for us to make because clearly there are logistical implications, but feel it is in Skye's best interests. Our Consultant Oncologist has referred us successfully (more complicated than it appears in black and white) to UCLH for Skye's radiotherapy treatment. After which we will return to Oxford to continue with chemotherapy. This will require a couple of trips to London in the coming week to set up new masks and have preparatory CT scans, followed by Skye's next course of chemo on the 7th. Our initial thoughts are that Sally and Skye will move to London for the treatment and hopefully be well enough to come home for weekends. I will remain at home with Jesse until term ends on the 13th of December and then join them in London. We are delighted to have Sally's brother Simon, together with Tess and baby Cordelia (aka Cordydelala by Jesse) with us for the weekend, 'all the way from Africa'! All the kindness we have been shown is truly humbling, and only wish we had the time and opportunity to say thank you to everyone individually. Please take this as a sincere thank you for every message, card, thought and prayer that reaches us from around the world.

Skye has had a good few days at home since being discharged on Sunday night. His blood counts are back up, which has meant no more daily injections (aka pinnies) for the last 4 days. This makes life considerably more pleasurable for all concerned. We head back to the JR tomorrow for the start of chemo round 3 - cyclophosphamide! Skye, getting frustrated with not being able to move around, has devised a new mobility technique of his own. When I arrived home from work last evening, I was told to wait at the front door, because Skye wanted to come and greet me. He moved himself all the way from the kitchen to greet me at the front door. We are so proud of him

Sally and I have appreciated all the support we have had. Skye is, at present, as well as we could hope. On Friday we saw the first signs that his hair was thinning and overnight on Friday, huge chunks came away from his head. We had little choice but to get rid of the remaining hair, and I decided to join him. There has to be some advantage to losing my locks, and I have set up a Just Giving page to raise money for Cancer Research UK. We have targeted a modest sum of £100 as we do not yet know what the future holds, and what sort of fundraising we might have to do in order to ensure Skye receives the optimum treatment in future months and years, and don't want to exhaust people's sense of charity at this early stage. As a result, we are not wanting donations in excess of £2! There are so many different charities doing such good work for children's cancer and brain tumours in particular, and of course the Children's Hospital who have supported us so well, but it is too soon for us to know who to support more fully at this stage of the process. Skye took great delight in wielding the clippers! The photographs tell the story.

Skye is being incredibly brave at a very difficult time. He was due to be at home for almost 2 and a half weeks from the 30th September, ahead of his next course of chemo starting on the 17th October, but in reality that was a pipe dream. After 3 days at home he had to go back in for 48 hours with a raised temperature, and after being at home for another two days, had to go back in for a platelet transfusion, and last night, his temperature spiked again and he has again been admitted for further treatment. His neutrophils, which are essential for fighting infection, are indistinguishable in the blood tests, but as a result of his daily GCSF injections his white blood cell count is on the way back up, and this is positive in that his neutrophils should follow suit. It is a constant struggle to get sufficient nutrition into him to maintain his weight and strength. The end result may well be a naso-gastric tube to assist with the feeding process. As a result he is pretty flat at the moment. On Monday, Sally and I had our introductory meeting with the Radiotherapy Department, which was a real reality check. Skye is scheduled to have twice daily treatments, 6 hours apart, Monday to Friday, for 5 weeks, starting at the end of November. He needs to have a mask fitted that will hold him the exact same position for each treatment. Hopefully we can do this with him being conscious. If not, we will have to relocate to Birmingham or London, where they are able to perform two GA's per day, if we are going to follow the set protocol. The hospital's here are only able to administer one per day. This brings the added complication of the length of time that Skye has to be nil by mouth. We are therefore hoping that Skye is able to handle the process while conscious. Yesterday's induction for him, while feeling pretty rubbish went as well as we could hope. Our other major dilemma, is the major long term effects of radiotherapy on the developing brain and spine, and the possibility that proton therapy, only available in the U.S., may have fewer side effects, BUT this is mostly theoretical and not well documented over longer periods of time. The advantage of conventional radiotherapy is that it is thought that the 'glow' or 'spill' around the radiation sites is beneficial in mopping up malignant cells, but the major down side is both the exit rays, through the thyroid, heart, stomach and gut. The impact on neurological functioning and growth is the same for both treatments, ie bad, but proton therapy has a perceived lower incidence of secondary tumours. Apologies if this comes across as a negative email - but just the way it is!