So much has happened since the last update, that it is difficult to know quite where to start. Skye was discharged from hospital on Friday the 4th of April and after a few days of adjusting, life has seemed pretty normal. The 3am and 6am alarm clocks to administer meds are standard and the days are filled with activities to keep Skye entertained. His lack of mobility means that he is confined to the corner of the settee for the most part, from where he can make his frequent demands.

Sally has been arranging a number of play dates with his friends, and despite the risks involved in picking up bugs, these are invaluable for Skye in allowing him to build his confidence amongst peers. It has been instrumental in forcing him to be more active and mobile. The 7+ weeks in hospital left his legs incredibly weak and standing to support his own weight is just starting to come back.

Jesse has come up with some pearls of wisdom. He is incredibly chatty and spontaneously said to Sally, "Thank you for coming back to Abingdon!". When Skye announces that he needs a wee, Jesse dashes off to fetch a wee pot for him, and seeing the two of them interacting so positively, is heartening. Unfortunately, Skye has lost complete control of his bowels, and we are hoping that this will come back, but for now it remains a management issue that we need to deal with. The positive thing is, that they are working, and we move forward from there.

Yesterday morning Jesse was chatting to himself, saying 'if Skye is sick, then he must go to the hospital, then we can see Alice at the hospital and we can see Natalie at the hospital and I must go to Granny's house' etc. It is touching to know that at age two and a half he understands so much. Sally has been frenetically busying herself about the house, re-orientating herself and knowing that this precious time at home will evaporate all too quickly before it starts all over again.

Skye is as good in himself, as he has been since the start of treatment 7 months ago and to have him smiling and laughing and interacting with us has been a delight. His home coming was timed perfectly with my Easter break from school, giving us all a chance to re-adjust. It has been a real treat, with us all being at home. Pollen and dust has been a real issue with no eye lashes to protect his eyes, they are vulnerable but there is a positive sign of these just starting to reappear, but this exacerbates the itchy eyes.

We squeezed in a visit to the Theatre to see Dinosaur Zoo. Great fun and Skye got to go on the stage and stroke the dinosaurs. We have a real sense of calm at the moment as we have no decisions to make in terms of treatment. The next step is accepted as another dose of Thiotepa with all its evils, but for now it is all about gaining strength for this next session at the end of May.

Today was an anxious affair as we waited for results and the more time that went by the more time we had to speculate as to what might be!

Back in November after 11 weeks of Chemotherapy, Skye's disease was stable at best, but progressive in parts. This time, following Radiotherapy and High Dose Thiotepa, we have 'significant reduction'. This is incredibly positive news for us and we can now go forward with very cautious optimism.

We have been told that considering the extent of Skye's disease, this is the best that we could have expected at this stage. There was evidence of low grade uptake of the contrast dye, which could be the result of scar tissue from Radiotherapy, which is what we are hoping, but difficult to tell. We have another scan booked for the 22nd July, which will give us our next comparison. At this stage though, it is possible that the active tumour cells are no longer reproducing and in effect he would have been cured.

This result means that we can move forward to repeating the High Dose Thiotepa, which will now be delayed until the end of May due to Skye's slow recovery from the first course. Ironically, they believe he has coped remarkably well, and if it were not for his inability to feed, he would be home, but nutrition is such an important factor in prognosis, it is something we have to get right. His bloods are looking really stable and hasn't had to have any transfusions in almost two weeks. Well done the stem cells! So on the back of this news we should be really pleased.

What I am grappling with, is my ability to be 'happy'. When will I be able to be truly happy again? And if I am 'happy', should I be happy? Or will it be forever tinged with sadness? Skye has proved himself to be an unbelievable source of strength to both Sally and I, because he is so resilient, so courageous, so witty, and so funny that he has had us genuinely laughing! Therein lies a remarkable lesson for us all. I think we have to crack on and live! But live a life that is forever altered. I hope I never have to go through what he has endured these past 7 months. And again I am asking myself why! Why him? Why us? Why now? A time of his life, when he should be having an absolute ball, running around without a care in the world, he can't! Will we as parents, ever be able to come to terms with this.

But for now, we are ‘happy’, happy that we have a plan going forward, happy that we have Skye, and Jesse, and that we can treasure this precious life that we all get only one chance to live. 

Tomorrow marks a big day in our journey as Skye undergoes an MRI scan to assess the state of his disease. Anxiety provoking doesn't really begin to describe what Sally and I are feeling. Especially in the light of recent episodes of vomiting. There has been a pattern of morning vomiting developing, which is how it all started. Sally quizzed / grilled / questioned / interrogated our Consultant this morning about what else it might be causing the vomiting, but because of the complex nature of Skye's treatment and the complex nature of the body's possible reaction to those treatments, there are no straight forward answers. Hence tomorrow's scan being such an important marker! Sally and Skye were able to escape for a few hours yesterday to celebrate Mother's Day with Granny. Great first BBQ / Braai of the season! Skye was on good form, sitting in the garden cutting chives for our salad and enjoying some time out of his room. The afternoon went far too quickly before they had to head back. Today we celebrated Sally's birthday at home, which was lovely, can't really say much more - it was just lovely to have the family all together at home. Stark contrast to last year, when we spent the afternoon running about on the beach acting like Easter bunnies in Melbourne. Jesse has once again adapted amazingly since coming home from Granny's on Friday. He is so accepting of everything that is going on around him. Understands that Mummy and Skye have to head off back to the hospital and insisted on standing outside to wave goodbye to them as they drove off. The first thing he said when he woke up this morning was, "it is mummy's special happy birthday day today", which made me want to cry. He is great company and such a hero considering the disruption to his life. Also demonstrates the great job that Granny and GT have done in his regular transitions. Sally had to cope with an awkward conversation on the way back tonight, when going through tomorrow's plan. Skye understands why he has to have the scan and is pretty comfortable with the procedure and says that he can do it without a GA, which shows great character, but for a variety of reasons it will be under GA. "Mummy what happens if the photographs show that the lumps are still there?" - is a much trickier question to answer than most. But he asked it, and unfortunately we don't have the answer. Sally and I have so many questions of our own and some potentially traumatic decisions to make in the coming week. One step at a time is all we can do! We will not have any results until much later in the week, there is no immediate feedback. The info they gain tomorrow will be deliberated by a team of Consultants from a range of disciplines including Radiologists, Neurosurgery, Radiotherapy and Oncology. So no quick results! 6 and a half weeks in hospital now and no real sign of that changing just yet - but hopefully soon.  I always start with the intention of these posts being short and to the point, but it never quite works out that way.

We had a fabulous day together yesterday. Skye came home mid-morning and he was on pretty good form. The four of us actually sat down together at the table for lunch for the first time in months, which felt like a real treat. Albeit for 5 minutes, before Jesse declared that he had finished! Skye had half a thumb nail of potato and a few sips of Paediasure Milkshake - big meal for him!

In the afternoon we set off to watch the Grease rehearsal and it was lovely to catch up with friends and for Skye to do something completely different. He was really engaged in, not only watching the show, but also running a stall, selling sweets on behalf of his Charity. Soon to be officially announced! We had to be back at the hospital for 5.30pm, so Jesse went off with Granny while the 3 of us went back to the JR.

We had a really fun evening, with Skye being on brilliant form, cracking jokes, being witty and laughing until he thought his sides would split. He was laughing so much that he had tears rolling down his cheeks and asked Sally, "Mummy, will my sides actually split?" It was so heartening to see! He drifted off to sleep and Sally and I sat down to watch a programme on TV while he slept beside us. Once again, a strange sense of normality, despite being the first time we have been able to do that. The only interruption to the evening was a visit from the Registrar to go through today's procedure and to sign consent forms. I asked my usual 101 questions and then when I got back into the room to debrief Sally, realise that I forgot to ask question 102!

This morning was a completely different affair. Skye was 1st on the list. The anaesthetist came in just before 8am to do his pre-op chat, followed closely by the surgeon. Nice South African chap who heads off shortly to take up a consultancy at Red Cross Children's Hospital in Cape Town. Skye again showed his unbelievable maturity through the whole process, asking questions, all valid and coherent. In the anaesthetic room he took out his 'pipes' decided that they should use the white one because the anaesthetic was white, sat calmly on Sally's lap until the last moment when the fuzziness starts and then he always has a mild panic before he goes limp. As usual I can't hold back a few tears and we head off back to his room to be called to recovery.

Quick and simple op but again with management implications going forward, but, we are assured, for the best!

Insertion of a PEG: pump stomach full of air, send camera down the throat and into the stomach, shine light through the wall of the stomach upper left abdomen, depress stomach from the outside, camera checks that they have the right spot, make incision in stomach wall, muscle and skin, feed the pipe from inside to out, small bubble/balloon prevents pipe coming all the way out, place clamp on external aspect of the pipe, add the connectors, job done!

Skye was clearly in discomfort which was eventually sorted with yet more drugs. Amazing how quickly they work when they go through his line. Discharged from recovery just before noon and we spent a quiet afternoon just lolling about in his room, chatting.

As he drifted off to sleep this evening, in a half asleep, half awake state, his little hand came searching for comfort, just gently searching for a hand to hold, it is an incredibly tender moment which is difficult to put into words. Every now and again he gives it a gentle squeeze or a little movement of his fingers just to check it is still there. His strength, his fortitude, and his tolerance for all that we are putting him through, is truly awe inspiring. Getting his nutrition sorted is a key step on the road to recovery so we are hoping that the PEG proves to be successful.

“Actually, I am feeling fine”

This was going to be a happy and positive email, but that mood has passed and I am a little too melancholy for it to be a positive, jovial one, but it many ways it should be. On Friday, following conversations with the medical team, it was decided that Skye would be allowed out of hospital for a few hours on Saturday. As is so typical of Skye, he thinks of other people rather than himself and a lot of the excitement was about keeping it a secret and telling me when I arrived for my ‘visit’, that he was allowed to go home for the day. It was lucky that his car seat just ‘happened’ to be in the car, otherwise we wouldn’t have been going anywhere!

To have Skye and Sally come home for the 1st time in 4 and a half weeks, was a real treat. We picked up Jesse on the way, who was desperately excited, and whilst we didn’t do much,  we were all at home together as a family, out in the garden and just simply being at home. Skye has lost his ability to walk again, but he was quite happy sitting in the garden, shelling sweet-peas in preparation for planting and sitting at the kitchen table playing with play-doh.

The time went all too quickly and at 4.45pm they had to head back. Sunday brought the same result and although Skye was a little more tired, enjoyed his time at home and we baked some bread, with a lot of flour and other ingredients going everywhere, made cookies and watched Jesse tearing around the garden. Skye also wanted to go to my school where we rolled balls around the studio, and this helped him to feel as though he was able to do things he was previously able to do. We had fun, but these activities are always tinged with a deep sense of sadness.

Preventing him from coming home more permanently is the inability of his stomach to cope with any kind of nutrition, so has continued reliance on IV TPN as a nutritional source. They have given up on the NG tubes due to the constant vomiting, so we have to come up with a new plan, which could involve bypassing the stomach and getting nutrition straight to the gut. Three options exist; one is a tube, which passes through the stomach and into the gut via the nasal passages, which is inserted under semi-sedation, one is a double ended tube through the abdominal wall with one end in the gut and one in the stomach, and the other is a PEG – Percutaneous Endoscopic Gastrostomy, which is inserted under GA through the abdomen and directly into the stomach.

This comes with obvious further discomfort, and risk of infection, so yet more careful management of pipes and tubes. I am uneasy with the latter, as any form of further invasion of his poor little body makes me uncomfortable, but deep down realise that this may have to be the answer. Proper nutrition is key to keeping him healthy and gives him a better chance of survival.

Sally and I spent 45 minutes on the phone last night discussing things, and because she is constantly hands on is much more comfortable with all of this than I am. His vomiting mostly occurs in the morning, and this gives Sally and I a deep dread that this is being caused by the tumour, which is how it all started. The MRI in 2 weeks will allay or confirm our deepest and darkest fears.

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.

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395827360426-NUE500L97MTTKO1OZ7DM/image-asset.jpeg" alt="" />

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. 

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395827443223-AUWUCPHS98X6PGQ6HVBJ/image-asset.jpeg" alt="" />

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!

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395826605983-P0AHQOYZGL183PULOD0Q/image-asset.jpeg" alt="" />

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.

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1393976599085-J3W6MJWUR2QEYY6O4YC2/IMG-20140223-00407.jpg" alt="IMG-20140223-00407.jpg" />

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.

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394059063575-BXP5XGZ426O6AVTN6D6T/IMG_3570.JPG" alt="In house baking at its best!" />

In house baking at its best!

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394059132633-SDV52WRA0MPCHWQ3VVHE/IMG_3572.JPG" alt="The finished product - yum!" />

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!

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1395566550878-NAJB2E5IH6XHCWXV15GL/IMG_1781.jpg" alt="An improved look for School visit number two!" />

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.