Family Blog

Mother's Day

UncategorizedMarch 06, 2016

How one should NOT be spending their #PaternityDay...

UncategorizedFebruary 25, 2016

In Response to Media Coverage on Proton Beam Therapy

UncategorizedFebruary 06, 2016

Of all our blog posts - this is one of the most important yet. When you have 10 minutes, please take the time to read and digest.

It has been incredibly difficult to see the way the media has portrayed the most recent Lancet Report on Proton Beam Therapy. Lets just be completely clear. This is not some magical treatment that will be the answer to all parent's prayers who have the unenviable task of making decisions how their child should be treated for brain tumours. Proton Therapy is still a radioactive treatment. While it is very good news that the UK will be having Proton Machines (and we should have had them a long time ago,) it is incredibly dangerous to place all brain tumours in the same bracket. Even the most common Medulloblastoma which Skye had, can be sub-categorised four times over and needs to be treated differently in order to strive for a cure.

Paediatric Consultants in the UK do an exceptional job despite being hamstrung by many system related obstacles. Any parents finding themselves having to navigate their way through the world of childhood brain tumours should keep faith in their consultants, but certainly feel able to question and share in every decision that is made as these are decisions are ones that will remain with them for the rest of their lives. There are system failures, which need to be urgently addressed however.

The system failures, need addressing as a matter of urgency.

CLINICAL TRIALS vs STANDARD TREATMEMT GUIDELINE

Children who are diagnosed with cancer in the UK are currently placed on one of two different treatment plans. One option is in the form of a Clinical Trial. Here there is a Chief Investigator who has an oversight of the entire Trial and in each Centre there is a Principal Investigator who has a responsibility to submit in writing any adverse events within 24 hours of their occurrence. If no Clinical Trial is open for a particular tumour type, the child is placed on a Standard Treatment Guideline Protocol where there is no such mechanism for feedback on treatment, and it simply relies on the diligence of the clinicians to share data with each other and that can take far too long during a critical time when children are fighting for their lives.

The Milan Protocol (STG)

The severity of this aspect of care can be illustrated using the example of the standard treatment Milan Protocol, which was billed to us as offering the best cure rate for our son Skye’s type of tumour. This protocol comprised of, amongst other treatments, twice daily (hyper-fractionated) radiotherapy and a high dose of Thiotepa chemotherapy. When we approached consultants from around the world including Dr Torunn Yock responsible for the most recently published Lancet Report and Dr Roger Packer, we were told that Proton Therapy could not be given twice daily and if we opted for Proton Therapy, we would not be able to follow the Milan Protocol. At this time, the Milan Protocol, devised from a single centre study, was presented to us as the UK’s standard guideline treatment due to it having superior cure rates to that of other protocols and therefore our decision was made based on the fact that opting for protons would not have allowed Skye the best possible chance of being cured.

There had however been misgivings about the efficacy of the Milan Protocol for a lengthy period of time prior to Skye commencing treatment but we were not made aware of this. This is just one example of a number of standard treatment protocols for which there is no formalised data collection system currently in place in the UK where clinicians can immediately and reliably share information such as acute side effects and outcomes from treatment.

The Milan Protocol was withdrawn from use in the UK after Skye’s diagnosis of chemoradio-neurotoxicity was flagged up by his consultant to other clinicians, but had there been a more robust systematic collection of data, discoveries and amendments could have be made much quicker.

There was also a general feeling among clinicians, that because of the very nature of the accuracy of proton treatment, this may not prove as effective as conventional radiotherapy, thus having an impact on cure rates. It is yet to be determined if this will have significant impact on children who fall into the high-risk, metastatic medulloblastoma category.

http://www.cclg.org.uk/News/proton-beam-therapy-behind-the-headlines/131074

Medicine is not black and white. We will constantly learn and refine or dramatically change treatment. Which will only happen through funding research. While it is fantastic news that the UK will be getting Proton Machines, we must stay mindful to the bigger issues particularly surrounding the number one cancer killer in children and encourage the leaders of our country to address the need for a formalised data collection system to be implemented as a matter of priority and not rely on ‘make shift’ data collection systems which have been implemented internally as a direct result of tragedies as in our son's case. The way funding is apportioned within cancer care as a whole is also important but that's a whole other story... http://www.telegraph.co.uk/news/health/children/12140533/We-need-to-think-about-how-we-fund-childrens-cancer

Your continued support is much appreciated as we address the Data Collection issue with the NHS and CCLG Chief Executives. We have been working behind the scenes on this with keys players and feel now is a good time to bring it into the public eye.

See the Sky

UncategorizedJanuary 11, 2016

It has been a while since I picked up a camera to take some 'arty' shots. I am thrilled to say that Flynn seems to have taken to life in front of a lens as well has his two big brothers. Having a baby in the house brings with it a sense of wonder of nature and the world we live in. Who cannot fail to smile back when a little innocent face grins up at you?

I see Skye in Flynn's eyes and so many caring traits Jesse demonstrates towards his new brother. Our hearts are still so very heavy but our minds are full of the daily business we must attend to which helps get us through each day.

Flynn’s birth has been a lifeline to us all but there is a term for bringing a child into the world, labour. There is no term for the pain watching them leave, a labour that lasts for eternity. A struggle every day to remember to breath between each contraction of the heart, a fleeting moment of respite before the next wave of agony controls your mind.

I enjoy breast feeding the new man in my life, watching his little face and hearing his contended noises. Third time around, I am determined to ‘crack’ better sleeping habits. Skye and Jesse had snatched sleeps during the day as we dashed from one social engagement to another. I have two books by my bed, one on Gentle Sleep Solutions and the other on Mindfulness in Grief. Just like my moods I can lunge from one subject to another in an instant, especially during night time feeds when the house is silent and I have time for my mind to wander.

WHAT IS THIS?

The book on mindfulness grabbed my attention with an image. It is 'sky with bird', not just a bird. Seeing the sky and the bird with equal amount of attention, and no desire to change either one is mindfulness. The book goes on to explain that, if applied to grief skillfully, mindfulness allows us to observe the fullness of our experience: our heartache and love, fear and anger and our gratitude for the friend with the casserole, and whatever else shows up. Rather than fight against reality, we learn to embrace each moment mindfully.

We have been fighting non-stop for the last two and a quarter years and we are tired. There are still things we will keep fighting for – a fomalised data collection system for children on standard cancer treatment protocols for one! Our communication with Oncologists and Politicians is ongoing. It is senseless and short sighted not to have a system in place for consultants who work round the clock to try and help our children, not to be able to formally share their experiences with standard treatments (good or bad).

We will however try not to fight so hard with society. It is incredibly hard to feel in touch with people that live along side us knowing they will often only see the positive exterior we arm ourselves with when faced with work, charity events and school pick up.

For Andrew and I, running the Charity is not a ‘feel good’ activity to give us focus, it is tiring being constantly positive and thankful, which we understand we need to do and of course genuinely are. There are many days we just want to give up but then someone sends an email or picks up the phone and says they have nominated Blue Skye Thinking for a charity event. Research is a hard ‘sell’ but what the medics need and in the words of Andrew’s hero, Nelson Mandela “There is no keener revelation of a society than the way in which it treats it's children.” With so much chaos in the world, LOVE and GENEROSITY are what will keep us all going.

Christmas 2015

UncategorizedDecember 26, 2015

Skye's Christmas Bunting Extravaganza!

UncategorizedDecember 24, 2015

Wouldn't Normally Ask But... We Need Bag Packers in Waitrose Tomorrow!

UncategorizedDecember 11, 2015

Inner Turmoil, Outward Smiles

UncategorizedDecember 04, 2015

I have just come back from watching Andrew in a ‘Strictly’ dance competition at the school he teaches at in aid of BST, and I feel compelled to write. I can’t tell you how important it is not to judge a book by its cover. I do see how all our smiling fundraising photos can portray an image that we are doing well and enjoying life but that is so dangerous. It takes immense courage and strength to leave the house at all.

Tonight was the second time I have been out in the evening since Skye died 14 months ago. The first outing was for a jazz gig my amazing friend performed in aid of BST after having lost a child herself earlier in the year, so you see why I wanted to go and support her?

It was important this evening for me to support my wonderful husband who has been so patient and supportive of my black times and to take an excited and proud Jesse to cheer on his dad. I have however been floored by something someone said to me; “I don’t know how you and Andrew manage to keep going, achieving all the things you do and have fun because if my child died I would be just too devastated.”

I know we shouldn’t care what other people think but we do. We care that they understand about brain tumours, we care they understand that research is the only way the outcomes will change, we care so much, that we set up the Charity. We care too that people know facts about grief, which is why we speak out as honestly as we dare. In life, we have such little control over so many things. Andrew and I fought alongside our beautiful son and would have given absolutely anything to die instead of him, but we couldn’t, it wasn’t a choice, just like we don’t really have a choice now.

We could end our lives, prove just how much we loved him, that we cannot live without him, perhaps even do it in case we could be with him in an afterlife, but where would that leave our other beautiful boys and where would it leave the children who will be diagnosed tomorrow? However sad we are, we are stuck here and will therefore, in Skye’s very own words, “make the most of what we have”. It is a million miles away from easy, but we will do it because there is not really an alternative. We smile and appear to be fine because we are British (well I am) and we want people to feel at ease, we live with an inner turmoil every day, we are just getting better at hiding it.

All the dancers did brilliantly by the way and I am so very grateful to everyone who put themselves out of their comfort zone to achieve amazing things - well done. 10 POINTS ALL ROUND!!!

The Gruffalo Autumn Nature Trail

UncategorizedNovember 13, 2015

CLICK ON IMAGE FOR VIDEO CLIP

Last week was Skye’s 7th Birthday and it took every ounce of will power just to breathe. Jesse decided to make him a cake and after singing happy birthday, shouted, “Have a great day Skye”.

It was very apt timing therefore, that we received the news that Julia’s latest book, The Gruffalo Autumn Nature Trail was in print. Andrew rushed to the Bookstore in Abingdon and picked up a copy. Skye and I read all Julia’s books in hospital, his favourite being Jack and the FlumFlum Tree. Seeing the dedication in black and white is amazing but what I love more is the fact that someone Skye admired so much, shared the same feeling for him.

The book is part of a four-part season’s series and is the best ‘to do’ book I have ever come across, Skye would have thoroughly approved of its action packed content. Jesse and I have already transformed a leaf, made a sticker tree and earned our Gruffalo Explorer badge! To pick up a copy, visit Abingdon Bookstore or Blackwells Oxford, who have kindly agreed to donate a percentage per sale to Blue Skye Thinking. Alternatively you can visit our website www.blueskyethinking.org.

“While I sadly never met Skye, I was very touched by the video clip which I saw of him and his younger brother Jesse, and impressed by what his parents told me about Skye’s courage and his love of discovering new things. That’s why I dedicated The Gruffalo Autumn Nature Trail to Skye and Jesse. I hope Jesse and his new baby brother Flynn enjoy discovering all the wonderful things that autumn brings."

Julia Donaldson

Remember, Remember the 5th of November

UncategorizedNovember 05, 2015

A Book of Hope

UncategorizedOctober 14, 2015

Guess Flynn's Birth Weight - The Big Reveal...

UncategorizedSeptember 20, 2015

Going Home

UncategorizedSeptember 19, 2015

Flynn has proven himself to be made of strong stuff having fought off a nasty infection, which seems to want to remain a mystery! The quick actions of the nursing staff on the ward and the commencement of some pretty hard hitting antibiotics, no doubt changed the outcome as he has remained ‘well’ and we could have had a very sick baby on our hands.

On this occasion, we were lucky and Flynn’s lumbar puncture and blood culture provided negative results for meningitis, but other babies are not so lucky and although rare, is a reality for some. If, like me, you assumed that the all important non-blanching rash is the key symptom of meningitis, it was not Flynn’s rash (which he did not present with initially) but the following symptoms that raised alarm bells among medics and I thought it prudent to share them with you, in case it sparks a useful memory to help a sick baby in the future to begin treatment quickly.

These include: a fever with cold hands and feet, swollen fontanelles, unusual crying or moaning, drowsiness, floppiness, dislike of bright lights, grunting or rapid breathing, pale blotchy skin, or a purple-red rash that doesn't disappear when you press a glass against it.

Flynn showed all of these symptoms with the exception of the non-blanching rash and floppiness. Whilst not meningitis, he has no doubt suffered a pretty impressive infection of some sort and we are grateful his inflammatory markers are now almost back down to normal. Three cheers for the NHS!

Flynn and I have also both been suffering with a head to toe rash (you don't need to see mine), They have been monitored and with both our fever and symptoms much improved, we are on track for home!

During our stay in HDU, I realised how much milk some premature babies require and have subsequently signed up to be a milk donor. It remains to be seen just how much I will be able to produce with my rather hungry hulk, but if anyone out there feels able to express a little extra for the sake of these tiny bundles then contact Amanda.Wood@ouh.nhs.uk or visit OXFORD MILK BANK

As you have been given a clue as to baby Hall's birth weight you have only 1 day left to place your bets at:

https://www.justgiving.com/flynn-birthday

The man himself will make the big reveal tomorrow when he will be one whole week old already! Well done Flynn for your first ever Blue Skye Thinking fundraiser and thank you to those of you who played along and pledged your £1.

Going home will be, like every other big event in our lives, a time of great excitement and joy but of course coupled with deep sadness that one boy will be missing. In Jesse’s own words “I think Flynn is crying because he knows he will never meet Skye.” Flynn has two brothers, just as Jesse now does - forever and always.

Skye as the proud big brother almost 4 years ago.

Jesse as the proud big brother yesterday - Monday 21st September.

Life Can Change In An Instant

UncategorizedSeptember 15, 2015

Baby News - Take 2!

UncategorizedSeptember 13, 2015

We are proud to announce the safe arrival of our third beautiful son, Flynn Alexander Phoenix Hall. Born at 2.30am today in the water pool at the JR's wonderful Oxford Spires Midwifery Unit.

Jesse is a very proud big brother, and despite him stating that he already had a brother, so would have rather had a sister, he seems to have been won round with the concept of being able to have a matching wardrobe again!

We are very grateful to have Flynn in our lives. We are equally grateful for Jesse, who has been through so much upheaval too in his life so far.

He once again blew us away with his maturity and compassion, when he heard Flynn crying for the first time and immediately said that he thought it was because he would never get to meet Skye! He then went on to say that Flynn could help him with his "very important work" for Skye's Charity and with this in mind we thought of a fun game everyone could play to guess Flynn's birth weight!! Pledge a £1 and have a punt....

https://www.justgiving.com/flynn-birthday

Baby News!

UncategorizedSeptember 08, 2015

"I just can't believe it mummy, Lily and JoJo have had babies!!"

A rather unexpected finding today, but Jesse's rather beautiful Lionhead rabbit Lily, gave birth to 5 beautiful babies. JoJo, a Mini Rex, is the proud father, and for the first time in a very long time I actually felt genuine happiness and excitement! Being rather overdue myself, I feel hopeful that the miracle of new life will bring joy back into our hearts.

Lily and JoJo when they were just wee themselves!

(As an ex Vet Nurse, I know we mustn't handle the babies, but we needed to do a quick house move to accommodate everyone so took a quick snap and all is well. The baby 'hippos' will now have peace and quiet for the next couple of weeks. Three guesses which one Jesse likes best... And no, we won't be keeping any so new home enquirers are welcome!)

Since my announcement of our impending new Hall baby, I have to thank some very special friends, some of whom have been through extremely tough times themselves, for all their support, long and rather dark conversations. You all mean the world to me! I also need to praise the NHS yet again, for taking my very dark thoughts seriously, and have put in place a number of safeguards prior to birth and post birth to make sure such an emotional time is made as secure and as possible.

The 29th was a very difficult day but of course every day is empty without our beautiful boy. Re-living every second of Skye's last day was utterly heart breaking. Watching him draw his last few breaths after saying he loved me to infinity brings tears to my eyes while I type this and every time I think of him saying it. I love you too, to infinity and forever.

A very magical moment happened on the evening of the 29th, those of you in Abingdon may have seen it also, but at Jesse's bedtime, we looked out of our bedroom window and there was the most magical full rainbow in the sky. Jesse then dashed through to the front of the house to see if he could see it from his window, which of course he couldn't, but what he did see was even more spectacular and to his squeals of delight and urgent appeal for us to rush through, the three of just just gazed at the most beautiful pink sky. Jesse finally broke the silence by saying the thought is must be Skye making it pink because he knew we were thinking about him and Skye knew how much Jesse just LOVES PINK! Whatever one's beliefs are, it was a truly magical sight.

Without wanting to send another blog post out too soon, we also wanted to let all the Loom to the Moon helpers out there know that BBC's Blue Peter on CBBC, will be doing a feature on Skye's record breaking bands THIS THURSDAY at 5pm, so do tune in if you can and see if you can spot your band!

If you missed it, you can watch again 8 mins in: http://www.bbc.co.uk/iplayer/episode/b06b955k/blue-peter-world-records-chart-toppers