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!

Microscopic Report - Samples consist of a cellular tumour composed of densely packed small cells with scant cytoplasm. Nuclei are mostly round or oval and quite hyperchromatic. There is vague nodularity on low-power but no desmoplasia. Some tumour cell nuclei are large and very pleomorphic; however they are not very common. Mitoses are frequent and a small area of necrosis is present. There is also microvascular proliferation. No rhabdoid cells are present. Most tumour cells express synaptophysin and show preserved nuclear INI-1 staining. Tumour cells are negative with EMA and Cam5.2 antibodies. Beta-catenin shows no nuclear translocation. MIB-1 expression reflects the vague nodularity and is approximately 20% overall.

Comment: Features are those of a medulloblastoma with metastatic disease without evidence of Wnt pathway activation and morphology of classical type rather than anaplastic large cell variant or desmoplastic/nodular variant. 

Diagnosis: Medulloblastoma, WHO Grade IV, classical subtype with no WNT Pathway Activation.

Post Operative MRI Report - There has been a gross total macroscopic resection of the tumour; there may be a very small portion present inferiorly within the right side of the fourth ventricle. Extensive metastatic dissemination is again noted to within the cranial cavity and I think the small focus of nodular enhancement related to the left superior vermis is metastatic disease rather than residual disease related to the fourth ventricular tumour.

Skye is coping pretty well at home. We managed to get him home last night, technically not we, due to a minor hiccup on the way, but having been discharged at 9pm, we stopped off to pick up Jesse, and unfortunately as we got him into the car, he demonstrated sympathy for Skye by throwing up. So as not to risk Skye's health, he and Sally had to stay, while Skye and I went on our merry way. This brings us on to a very important issue. Skye is now entering a period of risk in terms of infection and the healthier he is, the fewer delays we can expect with his treatment. Despite a blood transfusion last night he will undoubtedly over the next week or so, enter a state of neutropenia, which means that his neutrophils are at a critically low level and that his body will be unable to stave off infection. This state could last for some time, despite the fact that he will be receiving recovery GCSF injections daily, from Thursday onwards. We love having visitors, but if over the preceding five days, you have been in close contact with anyone who has been ill, please refrain from visiting. The reality is, that even the likes of a common cold has the potential to develop into something a great deal more serious given the vulnerable state of his immune system. Everyone's continued thoughts and prayers are greatly appreciated.

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Despite everything, it is so important that we try to make things as normal as possible. Like celebrating Jesse's 2nd birthday. Jesse has been amazingly understanding that Sally and I are having to spend so much time in hospital. It is really good to have Skye at home and be able to celebrate as a family.

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Having had a few days at home last week, Skye has been in hospital since Friday to receive his second round of chemotherapy, Etoposide. We had a very frustrating start to this treatment, as demand for beds on the oncology ward are at a premium, and the start had to be delayed by 24 hours until they had bed space. We feel for the staff working in a high pressure environment, who are constantly juggling beds and patients, but a very stressful time for us, as we strive to get Skye the optimum treatment. After a pretty rough day on Saturday, stronger anti-emetics have stabilised him and yesterday saw him being a little perkier. Side effects of the infusion have caused puffiness, particularly his face, and they are working to control this. His current infusion of drugs is due to finish this evening and hopefully come home tomorrow. He will be required to have a blood transfusion at some stage, and they will monitor his bloods to see when this will be necessary.

We had a good week at home, with Skye being on pretty good form. Apart from the constant monitoring and attention that he requires, it has seemed like a normal existence. The reality of him not being able to walk unaided is obviously something which are having to manage and address on a daily basis, and Sally has done a remarkable job with some more classic foot 'art'. Just when you think the day is coming to an end and quietening down, it is all change following a late night vomit, with sheets, duvets, pyjamas, going into the washing machine and Skye into the bath. But, he is doing so well and is great company! Skye has become increasingly sceptical about visiting the hospital, having had to go in and have bloods taken and / or GCSF injections on pretty much a daily basis since being at home. Yesterday morning, Skye underwent his 4th GA in 3 weeks. It doesn't get any easier, sending him under. He remembers so much about coming round after his 1st surgery. "They told me I was on a train, but I wasn't, I was on my bed!" This time to insert his Hickman Line, Bone Marrow Aspiration, Lumbar Puncture, and Vascular Catheter.

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394013951035-UC0LGZ9H1J2ZUKRTJ8QH/IMG_2178.JPG" alt="Hickman Line - vascular catheter inserted directly into the heart to maximise flow of drugs around the body." />

Hickman Line - vascular catheter inserted directly into the heart to maximise flow of drugs around the body.

Surgery again went according to plan and he recovered well in the following hour. They then harvested stem cells, a four hour process of taking blood, separating it, and putting it back in. They performed a second harvest today, and now have an excess bank of stem cells should they be needed at any time over the next 10 years. Again, he has coped admirably with blood being pumped in and sucked out of him! Any nurse or doctor that tries to 'touch his pipes', gets firmly told to 'STOP IT'!

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1394014016602-N173ZLOBP29GNZ3KHLQV/IMG_2176.JPG" alt="Skye has always had an interest in pipes - so thought he was in heaven with so many to play with!" />

Skye has always had an interest in pipes - so thought he was in heaven with so many to play with!

He is comfortably ensconced in his new cubicle on Kamran's Ward where he will remain for the duration of his 1st phase chemotherapy, which starts tomorrow (all being well). Overnight tonight they are testing his Renal Function, by inserting dye into his system and assessing absorption and flow rate. If all is well, we kick off with Methotrexate and Vincristine in the morning. Tonight we received the good news that his bone marrow is clear of any malignant cells! There is still an enormous unreality about the whole situation. The medical staff have been incredibly patient listening to and answering our plethora of questions. The expertise of the medical team is self evident and we know we are in the best possible place to receive Skye's treatment. It was lovely to sit and watch him interacting with his teacher this afternoon. (full time teacher working for the NHS and Oxfordshire County Council - looking after the educational needs of the young children on the ward, by staying in contact with his class teacher at school and keeping him up to speed).  He is bright and sparky, demonstrating a really 'cheeky' sense of humour, which comes out in their discussions. He is very relaxed in her company, which is great to see. We are so proud of him!

Skye continued to make good progress over the weekend, and following a 'reality check' visit to the John Radcliffe (JR) Hospital Oncology Ward on Monday afternoon followed up by a meeting with the Consultant Paediatric Oncologist, Skye was discharged from Robin's Ward, just a week after his surgery. We are amazed at how well he has done. He is still having co-ordination difficulties, especially down the left hand side of his body, and is not yet able to walk unaided. Yesterday afternoon saw some play therapy (Sally is rather brave) with a very big piece of white paper and painted feet!

<img src="https://images.squarespace-cdn.com/content/v1/52f80273e4b0c80880f13246/1393649973753-E6LS0NV993XIEIUSX9Z0/IMG_2173.JPG" alt="I will be contacting the Tate Modern!&nbsp;" />

I will be contacting the Tate Modern! 

Today, we are back to the JR for some pre chemo blood tests, followed by a series of GCSF injections Fri through to Mon. GCSF is 'granulocyte colony stimulating factor' which encourages the body to produce more bone marrow and stem cells. Marrow and stem cells will then be harvested on Tuesday 17th under GA, for potential future use, (if he needs a marrow transplant at some stage it is better to use his own cells - providing they are free of malignant cells - biopsy also being done), at the same time they will insert a Hickman Line (central venous line catheter) directly into the heart so that when the chemicals are introduced to the body, they are flushed/transmitted as quickly as possible throughout the body. He will then remain in hospital to receive his first phase of chemo (methotrexate and vincristine), which is likely to be until Sunday 22nd September.

This is the start of an 11 week cycle. Which will then be followed by radiotherapy, which will be followed by another cycle of chemo. Skye is so excited about being at home, and is on pretty good form most of the time. We dread having to take him back. Last night he drew us a picture of himself, with a sticker ladybird in the middle of his head to show us his 'lump'! He is incredibly brave! Sally is gradually finding it easier to accept help on offer as we both begin to realise how tricky the road ahead is going to be to juggle Skye's needs while still giving Jesse some 'mummy time'. Meals on wheels have been a godsend and we are so very grateful to all involved. If anyone local can offer the odd shop to Tesco, popping in for an hour to help with cleaning or coming with a craft activity/game to keep Skye's mind occupied while we catch up with some jobs, all would be much appreciated. He is sitting next to me right now and has just said, "I have one hundred sticker books now!" Thank you for your continued support, prayers and kindness! Jesse remains with Granny for the time being, as he has the sniffles and we don't really want to pass that on to Skye at this stage.

Having had our world turned upside down, there are snippets of good news that we cling to. Every card, text and email we receive is a source of strength for us. We are so grateful for all the prayers and well wishes that reach us from across the globe. The surgery on Monday was the first hurdle, and considering the list of risks that we had to accept prior to Monday, it went better than we could have ever imagined. They were able to remove more of the tumour than they had initially hoped. The next phase was post operative recovery and assessment of his basic functioning. He is able to breath, talk, drink, and eat normally without the possible complications of being tube fed and having a tracheostomy. His move from Paediatric High Dependency back to Robin's Ward went down well with him. Skye is clearly still in discomfort, but he has made really good progress considering how invasive the surgery was, he has shared a laugh with us and although his co-ordination is rudimentary as a result of the proximity of the tumour to the cerebellum, he is making good progress.

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His left hand side is much weaker and he is reluctant to use his left arm and hand, but we are coaxing him to be more active. He has been on a couple of trips downstairs in a wheelchair, one of which ended up in a pool of chocolate milkshake vomit. This is a current concern in that we have to keep an eye on intracranial pressure, and hope that there is no bleeding or increase in fluid production. He took his first few steps yesterday with underarm support, thanks to Sarah 'slave driver favourite nurse' Williams, and Mummy. He needs a great deal of support but we are trying to get the co-ordination going again. Histology - late on Friday evening one of the neurosurgeons popped in to let us know that his tumour has been identified as a Medulloblastoma. It is malignant and aggressive. The prognosis varies depending on a number of factors. Working against him is the fact that it has metastasised to other parts of the brain and spinal cord. Cells are therefore moving within the Cerebral Spinal Fluid. Tomorrow we meet with Oncology to discuss the treatment protocols but initial indications are that they will waste no time and chemotherapy is likely to start sooner than later. To have Skye with us this week post-op has been a real privilege, we have no idea what the future holds but what is absolutely sure is that we are ready to fight for him however hard that might be in coming weeks, months and ?, years. We will update you, when we have an opportunity to do so. Jesse is coping admirably, and we shared a lovely moment when Jesse joined Skye on his bed, and Skye beamed from ear to ear.

Not easy seeing his body go limp as the anaesthetic takes effect. A strange calmness as we wait. Anxious but calm. We busy ourselves with packing up his bed space. He will be in High Dependancy Unit if all goes well. Go to the park across the road, do a couple of turns on the zip line. When the phone goes, the heart starts racing. We dash through the corridors to get to his bed. 6 hours of surgery! Can't describe the joy as we see him lying there in pain, clearly been through the mill, but alive! We escort the bed from recovery to HDU. Along the way they want to give him more drugs, 'please, no thank you' he says. Just wants to be left alone. Tears fill our eyes. How proud we are, that he remembers his manners in such circumstances.

The last 36 hours have been emotional to say the least, but Skye is in good spirits, which makes it even harder for us to acknowledge the real issue. I have had a long chat to Greg and AVO this morning. I have shed lots of tears. Good to get them out of the way so that I can be positive when I get back to Skye. He has been keeping everyone entertained in his usual manner.

Things moved pretty quickly yesterday because I have a wonderfully forceful wife! Yet another GP visit where she forced a paediatric consultation. Following a CT scan last night and an MRI this morning, it has been confirmed that he has a significant tumour sitting between the cerebellum and the brain stem. Unfortunately there are cells, which have migrated down the spinal cord, which make treatment more complex. We are planning for surgery on Monday 2 September to remove the bulk of the tumour followed by further treatment depending on the type of cells they find. 

The last 24 hours have been surreal to say the least. Skye has been firm on the fact that he is starting school next week and has been telling the nurses as much. He is in great spirits which makes it even harder for Sally and I to accept that this is in fact real and not some horrible nightmare. Skye has been admitted and will remain here until he is well enough to go home. He is otherwise really well and happy. What a shock for us for a boy who is otherwise bouncy. It is going to be a long process, but he and we are strong.

Email to a Friend (Paediatric Consultant)

All is good apart from our 4 year old son. He has been vomiting regularly once a day for the past 4 weeks. Last 3 days this has progressed to 3 times a day. The GP has had him on antacid for reflux, (been back to GP 3 times now), but no effect. He is fine within himself, but naturally we are concerned. Growing well in terms of height over the last 3 months but not getting much nutrition over the past few weeks and is losing weight, now down from 50th to 25th percentile. Trying to feed him what he feels like eating. Mostly vomiting occurs in the morning. No anxiety issues for him, happy within himself but understandably lethargic and not really his bouncy self. 

We have been given a paediatrician consultation in about 2 weeks, which is frustrating that it is not sooner. GP has been on holiday and we have had to swap GPs. He has had blood tests, urine and faeces. but nothing showing up. We have thought about ketotic hypoglycemia, so done a couple of late evening and early morning snacks to see if it makes a difference, with no effect, and we are now becoming increasingly concerned for his welfare. 

What are your thoughts on stomach ulcers, brain tumours (headaches on occasions - today just before he vomited), hypoglycemia, allergies, diseases picked up in SA, Australia, NZ, or Hong Kong between Jan and March, excessive post -nasal drainage causing build up of phlegm in the stomach, celiac allergies (have tested but nothing showed up). So sorry to burden you with questions - two concerned parents, starting to worry!