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!