Mother's Day

It would seem fitting on this Mothers’ Day, to share with you the lovely news that we are expecting our fourth child, due in June this year. We consider ourselves very lucky to be able to treasure and nurture a new life and very much hope that Skye’s vision and values will rub off on his siblings, despite not being able to be the amazing big brother he would have continued to be, had he lived.

Jesse is very excited and has been telling Flynn that he will now not only have two big brothers but also a little brother or sister to play with too. Another bitter-sweet day ahead, desperately wishing my first born was able to bounce into the bedroom with a cup of water and burnt toast with his little brothers. Thankful too that I did get a cup of water and burnt toast! Jesse is the most thoughtful chap - he not only made a card from himself but also 'helped' Flynn and Skye make one.

I have been giving a great deal of thought lately to women so desperate to experience the wonder of becoming a mother and to be allowed the honour and experience of unconditional love towards a baby of their own.  I too would like to pay tribute today, to an amazing lady and who was also Skye’s Paediatric Oncology Consultant, Dr Sheila Lane, who is the programme director and clinical lead of Oxfordshire’sFuture Fertility Trust.

Did you know that ten young people under the age of 25 are diagnosed with cancer every day. Eight will be cured; one of these eight will become infertile as a result of their treatment and will not be able to have their own children. Being told that the treatment required to eradicate their cancer could cause infertility, can be overwhelming and I can only imagine the sadness that news like that can bring to one’s heart.

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The Future Fertility Trust, was set up by a team of doctors, researchers, and tissue bank specialists, who offer a comprehensive ovarian and testicular tissue cryopreservation service for the young. They see and advise patients from the earliest point of diagnosis for a wide range of conditions, and give advice on appropriate fertility preservation options before, during and after chemotherapy and radiotherapy treatment.

They offer hope, and THAT, is a wonderful gift. If you want to learn more about their fascinating and quite wonderful work, please follow this link: http://www.futurefertilitytrustuk.org

Here's to HOPE this Mother's Day xxx

Retard in a Wheelchair

I wanted to ask your advice? If you knew that a child in a secondary school had been handed back his homework with the teacher's following remarks written on the work, how would you feel / react? 

"This is the kind of work I would expect from a retard in a wheelchair." 

I am not exaggerating when I say I have thought about this shocking and seriously ignorant comment every day since.

Yesterday, I was lucky enough to be invited to spend time at Helen House Hospice and today I have been listening to some incredible stories on Jack FM from exceptionally brave children and parents telling of their amazing experience at Helen & Douglas House. I was moved to tears, particularly by hearing Kathy talk about her wonderful wheelchair bound son Josiah. Skye too was wheelchair bound but as many of you will know, not for one second was he treated as 'less of a person'. It was listening to these stories today that has precipitated me writing this post.

We have had some appalling remarks made to us about Skye since his death on our brain tumour awareness You Tube videos, such as: "What did he die of, the fat face disease?" and "He is better off dead with such an ugly fat face." These comments are malicious and I genuinely pity the people who have nothing better to do than to write them. As a family, we chose to put ourselves in the public eye in order to try and guide and educate even a few people about the challenges facing children diagnosed with cancer. We accept not everyone will be supportive but it feels right to help where we can. These comments, I can shrug off.

Am I over reacting to this teacher's written words, or do others find this comment wholly unacceptable? I would like to approach the Head to discuss the matter but don't want to be considered a 'trouble maker'.

What To Say And What Not To Say To The Grieving Parent

We strive to be compassionate and have the urge to help the broken hearted. Why is it then, that so many comments feel more like a punch in the stomach rather than their intended source of comfort?

I used to be every bit the person I now try to avoid, desperately trying to find a ‘positive’ in any given situation. Society is not equipped to know what to do and say in times of utter despair and grief. For the most part we hide it and take the ‘stiff upper lip’ approach. Why?

Grief can flummox the most eloquent – even having lost a child myself, I still sometimes struggle to know what to say to other parents who are facing life without their child. Don’t let your own personal discomfort keep you at arms length. It is so incredibly isolating and while we may need to be withdrawn and physically alone, the only thing worse than suffering, is suffering without understanding or acknowledgement.  Don’t give up on us however hard we make it. We do need your love and support.

A beautiful boy we had the pleasure of getting to know while we were on the ward with Skye, died last week. Even now, I realise that there are simply so few words or actions that can offer comfort. My gift to his family is sharing the following advice for others who they may know, so that they may feel surrounded by love and not to feel even more pain by unintended but hurtful comments.

1.   Don’t’ say I CAN’T IMAGINE WHAT YOU ARE GOING THOUGH – Try!!!! Real empathy is the best thing you can offer someone who is hurting because when you really empathise, you are much more likely to say the right thing!

TRY: Keeping empathy in your heart and mind at all times. It is the key to everything that might come out of your mouth!

2.   Don’t ever say AT LEAST or BE THANKFUL. "At least he is not suffering any more... at least you have another child." Before you tell a grieving parent to be grateful, ask yourself which of your children you could live without?

TRY INSTEAD: "I miss him too, I remember when…."

3.   Don’t say IT WILL GET BETTER IN TIME. Don’t assume we are grieving for our own loss. The child's loss is the greatest and no amount of time will give them the life they should have had back.

TRY: "What do you need most TODAY?" "How are you doing TODAY?"

4.   Don’t be SCARED OF SEEING US UPSET. By mentioning their name, you are not reminding us they died, we did not forget! We desperately and fiercely want them to continue to have an effect on those who knew them, and that they always have a place in everyone’s heart and mind just as the living do – is that too much to ask?!

TRY: Sharing a memory you hold dear. Not just once but for years to come. We can’t make new ones like you can, but you can bet when you share one of your child, it will trigger a memory of our own. Be one step ahead of us and be the first to share your own memory of our child.

5.   Don’t force us to MOVE ON. You may think willing us or telling us it is time to do this will somehow make that happen. Although this may make you feel better to see us moving on, just as a mother of a 2-3month old child, after all the attention and support has subsided and they are left with the reality of daily life, we are acutely aware that life for others around us has of course moved on, but comments like that help no one other than the person saying them. If you think no one says this, I can’t tell you the number of parents I know, that have heard those very words. This is the surest way of making the person you are wanting to help, feel like you have twisted a knife in their already broken heart and you are likely to lose all faith they had in you forever. Never, never say it! Ever!  We have lost the most precious person in our entire lives. We have already had to ‘let go’ of someone we would have given our own lives to keep, so the only thing we have left are their memories and our endless love for them. Please don’t ask us to move on and let that go too.

TRY: "The love you have for your child now, will be as strong forever. I would like to be here for you every breath you have to take separated from your child, if you will let me?"

6.   Don’t turn New Year wishes into POSITIVE NEW BEGINNINGS. This time of year is already super tough but to receive positive sentiments for the new year such as “We hope 2017 will be a much happier one”. It is just cruel.

TRY: "I am thankful for you and your beautiful child who will stay in my heart throughout 2017 and the years after. Wishing you much strength for the year ahead. You are loved.”

7.   Don’t ASSUME PEOPLE SHARE YOUR BELIEFS. By all means share your thoughts on faith if asked, or at the very least, acknowledge that what you are about to say is your own personal belief. The blanket “HE/SHE is in a better place" is only a comfort if you share those beliefs, otherwise it can be interpreted as ‘their child was not best off with them'.

8.   YOU NEED TO PULL YOURSELF TOGETHER AND BE THERE FOR YOUR OTHER CHILDREN. If someone you knew had just had major heart surgery, you would be telling that person to take it easy and focus on themselves first. Grief is like having major heart surgery. Don’t make a grieving person feel any worse by suggesting they are neglecting their children because they are grief stricken. They probably feel guilty enough.  Encourage us to help ourselves first, so we can then be in a better position to help others we care about.

9.  Don’t keep things SUPERFICIAL. It may seem like you are doing us a favour, what we really need is someone who is willing to let us be real and to have someone who isn’t afraid of talking about the tough stuff. Take your lead from them. By all means offer a ‘lighter’ evening if that is what is required but don’t push for that too hard. Real healing comes from some of the heavier conversations.

10. IS THERE ANYTHING I CAN DO? Grief consumes the immediate and controls the mind for future planning. Better to offer specific help.

TRY: “I am going to the supermarket, can I pick up milk, bread?" "Can X come and play this Tuesday morning?" "Do you need help with that project?" "I could do… It would be no bother."

11. THEY WOULDN'T WANT YOU TO BE SAD. When you love deeply, you grieve deeply. We need to be sad; we can’t not be for someone else’s sake. Using our dead children to put even more pressure on us, is a platitude which doesn’t work.

12.  EVERYTHING HAPPENS FOR A REASON. I can’t believe I am even having to add this onto the list! No it doesn’t! Not everything in life is logical. Children should NEVER die before their parents.

TRY "Your child’s death is a tragic, terrible loss to the world, it breaks my heart, I am sorry, there are no words!"

Next time you speak to someone who is going through utter hell, instead of trying to make yourself feel better by showering them with positivity, stop, put yourself in their shoes, acknowledge how hard things are and NEVER forget their beautiful child. You are much more likely to provide that tiny fraction of comfort you were hoping for.

 

Credits

Thank you to Jeannie Page (photo), Christy Heitger-Ewing and mums from Kamran's ward who have travelled the same road and been subject to similar comments. Your help with this has been invaluable.

Navigating Christmas after the Loss of a Child

Christmas means many things to many people these days! New, well-marketed traditions are here to stay whether we want them to or not, but it is up to us as individuals to continue to live our lives how we want to, true to our personal life values rather than feeling pressured into keeping up with the Jones’.

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One of the most wonderful aspects of Christmas, is that it‘s often a time when families make the effort to come together. Needless to say, when someone you love is then absent, for whatever reason, the stark reality hits you during this time of ‘togetherness’ like a knife through the heart.

 

It feels like there is no escape for us, music in supermarkets pound out “All I want for Christmas is You”, School Nativity plays are cast with one less Shepherd, the empty stocking lies in a box, never again to be hung out for Father Christmas. It has, for us, now become a time of year, where we have to pull out all the stops to create a magical and hopeful environment for Jesse and Flynn, but that does mean supressing our building emotions of desperation and loss. I can only imagine that this must be the same for a great number of other people who are not ‘living the dream’ at Christmas time and our hearts go out to you. I recently saw two Christmas T-shirts in shop windows, one which said “I Want it All”, and the other “Do Nothing this Christmas”. These are certainly not the values we wish Jesse and Flynn to grow up with / nor the ones Skye held.

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As a family, we have our goals, and we cannot lose focus until they are reached, but we would never want our friends and supporters to feel we were pressurising anyone into our cause. I say this on the back of a school ground conversation I had with a mum the other week where she was exasperated by "yet another charity day", and the hassle of having to find a Children in Need outfit and to donate £1.

Jesse - age 5 - Elizabeth's Footprints Children's Intensive Care Unit

Jesse - age 5 - Elizabeth's Footprints Children's Intensive Care Unit

Skye - age 4 - Children in Need

Skye - age 4 - Children in Need

I don’t suppose I was quite the sympathetic ear she had hoped for, as I have always felt it incredibly important for schools to promote a ‘caring for others’ attitude that we wish our own children to adopt, and I for one feel glad when a fun event can be coupled with doing some practical good! The money for bringing about change comes from these very type of events. The amount of luxury purchases made at Christmas just highlights how we can all find a bit of spare change if we are motivated to do so.

 

What Andrew and I have discovered over the past two years is that fundraising is a tough gig! It takes an inordinate amount of energy, courage and bloody mindedness to keep things afloat and we would like to take this opportunity to thank each and everyone one of you who have stood by us in one way or another most sincerely.

Happy Families - Skye and his cousin - Christmas 2011

We very much hope that passionately sharing our new found knowledge, of an area which has been neglected for so long, sharing Skye’s humour, good natured spirit, and will to help other children, is what drives you to continue to walk with us, especially at this difficult time.

Please don't ever stop thinking and talking about Skye, we love seeing his name included in Christmas cards. It means so much!

We would like to share with you a video which we have held back until now as we were worried some may find it distasteful but it was a very true to life snapshot of how we all tried so hard as a family to keep silliness in our hearts and minds in order to enable Skye to giggle and laugh just as a child should do. We hope it makes you laugh too this Christmas….

First Day of School

 

My heart goes out this time of year, to all the mums having to hand over their precious children into the care of ‘big school’. We have all summer together, willing the date to get nearer, to be able to field some of the “why” questions, desperate for more time on our hands without having to be the soul provider of entertainment, knowing they will love making new friendships, devour new information and begin their journey of independence and growth. Why then is it so incredibly hard when that day finally arrives?

 

Of course there are the obvious worries about how our children will cope; Will they remember where the toilets are in time? Will they have a happy day and meet a nice friend? Will they like the cooked dinner and eat something? Will they be brave enough to speak up if they need something? Add to that a great big dollop of selfish feelings about how we feel. Oh come on, its true. I hate this defining moment when you know your child is growing independent and will ultimately leave you to discover a life for themselves and of course that is what I will encourage every step of the way but it doesn’t make it less hard.

 

I feel I owe Jesse a lot. What he has had to witness and cope with for over half his life now has not been the carefree, innocent, happy and exciting world I wanted to create for him. One day he was happily playing with his big brother in the garden, the next, a life separated from us all having to live with Granny much of the time and hospital visits ending with his inevitable howls echoing the corridors when it was time for him to leave. Jesse has been deprived the social life he craves. He is desperate to make friends with children his own age and I have made it my number one priority to make sure he has my full support.

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I have been very proud of myself and tried to blend in with the school parents, performing my best 'jolly' persona to date. "Smile", I tell myself every few steps.

Walking to school each day with Jesse (who is still somewhat reluctant), I get flashes of Skye constantly. Memories of his excited face when we bought his new school shoes and writing his name in his brand new book bag all come flooding back. Seeing the older children running to school with their older siblings, knowing that Skye should be with us, holding Jesse’s hand or bumping him into hedges and playing tag on the way in. My heart is so heavy (smile). Jesse feels it too and while I believe he enjoys making new friends and comes running out at the end of the day with a big grin on his face, each morning however he gets very worked up at the thought of leaving us for a whole day. He said he wished Skye could be at the school with him. Skye, (with my help) has been writing Jesse little notes and leaving them in Jesse's shorts pocket for him to read at school to make him feel less alone. Please tell me it gets easier?!

To finish, I would love to share this snap of Skye on his first day at school where we visited his class just for a short time. He boldly stuck up his hand, insisted I march him to the front of the class where he wanted to do demonstrate the purpose of his school swimming hat. “It goes on like this,” he said “and it keeps your hair from getting wet in the pool, well, it would if you had any which I don’t, ha, ha.” I will never forget it – what an amazing attitude.

Jesse has already seemed to have captured the hearts of many of the girls in the class so he must have picked up a few tricks from his big bro!! 

 

Cake Smash for Baby Flynn

Guess what?

It’s Flynn’s Birthday!

One whole year old.

It has been a happy day today.

 

 

Awoken by Jesse (and Skye) telling Flynn the significance of the day and he just grinned as he always does. Skye still features heavily in Jesse’s make believe world and he is often telling us that Skye has hopped down for a play. I don’t worry about this as Jesse is an incredibly sociable chap and had no problem making live friends too.

Andrew and I always find ‘special days’ some of the hardest to cope with but I am getting better at hiding what I feel for ‘the greater good’ and of course determined to make each day as good as I possibly can for J and F.

Cramming the day with activities is always good way to occupy one’s mind and musical statues seemed a good way to start. Skye won of course but apparently Jesse has picked him to be on his team so they both needed a prize ;-)

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For anyone wanting to know what this is… well it is the aftermath of a cake smash! It all came about because I was telling Jesse how Granny had made me a telephone cake when I was young and I had picked up the receiver to try to make a call. He thought this was so funny and said he thought Flynn would definitely try to pick up his ‘ball’ cake. Not wanting to miss a photo opportunity, we nipped to buy a piece of plexiglass, placed the cake and Flynn on it then snapped away. You really must try it – so much fun! 

Why the plexiglass you may ask? Well not only is it supposed to contain the mess, (it didn’t,) but gives a beautiful reflection so little grubby feet and crums of cake are highlighted in the glass which makes for a stunning photo. Flynn was a little confused at first weather to tuck in or throw it but did repeatedly say the word “bawll” so certainly knew what it was supposed to be. He is obsessed with all things spherical and had a good day surrounded by balls of all shapes and sizes. I had fun too, I feel very lucky to have such engaging little people to share my time with. Now all I have to tackle is Jesse’s 5th Birthday in a couple of weeks, which he has announced he would like themed on ‘minitaure’!! Well at least the cake should be easy!!

Last but not least, will be celebrating the birth of our dear Skye, who would have been eight years old on 5th November. This year we have decided to host a Firewalk Event and celebrate Bonfire Night in a rather special way. To find out how you can join in or sponsor us, check out the Firewalk page of the website.

Sweet Birthday Dreams Ball Boy!

Ring-A-Ring-O-Roses / Early Symptoms of a Brain Tumour

Three years ago today my little boy was sick in the morning for the first time. For the rest of the day he was right as rain. I re-live that day over and over again, thinking I should have known somehow that there was something very wrong.

Skye was diagnosed with acid reflux and was treated for this mis-diagnosis for two weeks. It was only due to seeking another GP's opinion and the fact that we were becoming worried that he wasn't improving, we insisted upon seeing a specialist paediatric consultant at our local hospital. Skye was diagnose fairly quickly but I have heard time and time again that children were not being diagnosed until they arrived at hospital with very sever symptoms at A&E. He did not suffer from headaches and I remember telling him to "look ill" while we were waiting in the doctors surgery as I was worried we wouldn't be taken seriously.

Brain Tumours are the leading cause of cancer deaths in children, and the UK is slower than other countries at spotting the signs. We need to change this and by providing practical resources to help parents and doctors I hope this will go some way to save and improve lives. I am really not intending to scaremonger, just to act as a reference and to inform parents and professionals what to look out for as it has been understandably playing on my mind today. As you can see from the video below just a couple of week before Skye was diagnosed, he was not a child who looked like he had a deadly tumour lurking and growing at tremendous speed.

The irony of the children's nursery rhyme Ring-A-Ring-O-Roses, makes me roll my eyes and shake my head every time I watch it but Jesse loves to watch himself having such innocent fun with his big bro so we thought we would share it with you to enjoy too.

HeadSmart is a campaign which is aimed at educating parents and GP's in the hope that it will will save and improve lives. If you would like to find out more information please visit www.HeadSmart.org.uk (Symptom cards can be requested for GP surgeries and local Schools).

SYMPTOMS INCLUDE:

*Persistant / recurrent vomiting

*Balance / co-ordination / walking problems

*Abnormal eye movements

*Behaviour change, particularly lethergy

*Fits or seizures (not with a fever)

*Abnormal head position such as wry neck, head tilt or stiff neck

*Persistant / recurrent headache (over 5 years)

*Blurred or double vision (over 5 years)

*Delayed or arrested puberty, slow growth (over 12 years)

If your child has any ONE of these, see your doctor. If TWO or more, ask for an "urgent referral".

With thanks to HEADSMART CAMPAIGN

Time To Move On

 

If you are reading this particular blog post then I have had the courage to publish it rather than just keep it hidden away.

I may just need to rant, but I was so upset today. I am glad in a way because it has made me have a long hard think about why I take comments about “moving on’” and “deserving some happiness” so badly. They are intended to comfort, but for me have the opposite effect. 

I am not in the least bit surprised that people who pluck up the courage to talk to someone who has suffered some kind of horrific event get nervous and perhaps come out with well meaning clichés. I would firstly like to personally thank those people for having a go, you hearts are quite obviously in the right place. The problem is, trying to enforce someone to think positively who is still in shock and feeling such raw emotions will sadly only serve to direct their rage at you or themselves (I am the latter).

Today had been a good day. When I say good, I should clarify what this feels like. Have you ever skipped a meal, and felt so hungry that although you can still function, conscious or unconscious, there is something nagging away at you constantly? It distracts you from what you want and need to be doing. A feeling that makes you edgy, with a short fuse and actually possibly even crazy until you have fed the hunger and returned to ‘normal’. The problem with grief is that there is no snack, no meal great enough to calm the heart and the mind so it is there, always, a constant feeling you have to learn to function with as best you can, but always lurking even during ‘good’ times.

I felt joy when I took baby Flynn and Jesse for a walk to some local woods. It was a simple and peaceful time with nature. Jesse is such good company, as Skye was, and we chatted much of the way. I encountered an overwhelming feeling of wanting to give him the life I had dreamed of for Skye and had a rush of feeling brave enough to take him to watch Daddy umpire a cricket match at school later in the day, remembering how much fun Skye had had, as a four year old watching the big boys and serving the half time orange slices.

 

Skye age 2 years

Skye age 2 years

After a Charity appointment I had to keep, sun shining, I joined Jesse pitch side and started throwing him some overs. It wasn’t long before I got ditched by Jesse, in favour of the ‘big boys’ who were obviously more cool to practice with. Flynn and I sat playing, minding our own business when I was joined by some other spectators. The conversation should remain private but although I felt I had had a very constructive day for the family and for the Charity, I must have ‘dropped the ball’ at some stage during the conversation because the phrase “you really deserve some happiness” and “one mustn’t live in the past” were said.  I usually attract these comments more if people sense my sadness and respond by trying cheer me up I suppose, so in public, I try to sound cheerful as best I can to avoid these kind of comments.

I used to be a ‘fixer’ too, a glass half full person, and I would love to still think like that but I have been changed. When someone says to me “it is time to move on” or “one can’t dwell on the past”, I think the only person actually benefitting, is the person saying it because it makes them feel better, willing to see you happy again. It is very natural to want to help ‘fix’ someone who is in pain but this is NOT the way to do it.  It takes as long as it takes to heal and maybe I never will. How about this for a late night analogy - allowing a fragile egg to stay safe, warm and away from danger so it can hatch and a chick emerge, able to walk by itself is surely much better for it than rolling the egg down a hill because it will get from a. to b. faster but most likely crack on the way?

Back to the Cricket - as you can imagine, I smiled, didn’t reply and politely made my excuses to leave. I took three wrong turns on the way home and burst into floods of tears when I made it back to the sanctuary of our home. 

Of course, I know I am over sensitive and I project what I think others may think of me far, far too much, but I take these comments as an indication that I am failing to do what I ‘should’ be doing. I really am trying to be a better person and I disagree with the saying “put the past behind you” because the past is what shapes the future good and bad. Every day I fight internal feelings of such hopeless loss and pointlessness of living but actions speak volumes too. I am trying so very hard to bring about positive change with our Charity and it takes a massive amount of time, energy and effort to rally supporters to help with fundraising events and encourage people to engage with Blue Skye Thinking. I am not sitting at home, withdrawn and cut off from society however appealing that is. I am fragile however, and have every right to be, because I defy anyone who could watch their own child die in their arms cope any better than us. Let us be sad when we need to be sad –please. Support us but don’t try to ‘fix’ us.

We all know the saying ‘one gets what they deserve’. Of course no one would ever suggest that Skye ‘got what he deserves’ but saying to us we “deserve some happiness” always makes me feel upset, guilty and angry. I have come to the conclusion that actually no one "deserves" anything, good or bad. We can work hard and strive to achieve goals or adopt a more passive approach in life, neither being right or wrong. I still believe in being pro active, but sometimes life events unfold that are out of our control and are certainly not a case of whether we deserve it of not. What do you think?

Perhaps in future, if you find yourself wanting to say "you deserve...." to anyone who is grieving for a loved one through death or even for the end of a marriage, try replacing it with “I would dearly like you to be able to find space for some happiness in your heart”.

Truck Festival 2016

There is a video with this blog post - view by going into your browser.

We can't thank those of you who helped at Truck Festival this weekend enough! Your helpfulness, professionalism and dedication made all the difference. Hope you like this video of the weekend...

***SOS*** I still have excess frozen stock which I need to shift at amazing prices! Please can anyone contact local clubs (Rugby / Footie clubs, groups or for your own use?!) If we can sell it, we raise our profit by alomst £1,000.

4 x boxes (20) Chicken, Bacon, Leek Proper Cornish Pasties £25
6 x boxes (20) Cheese and Onion Proper Cornish Pasties £25
25 x boxes (40) Sausage Rolls £25 per box (62p each RRP £2) 
18 x boxes (48) Frozen Croissants £15 (31p each RRP £1) (£15 is less than normal wholesale price) I Could break into bags of 24 for £7.50 for any families.
3 x Ketchup sachets (200) £10 (wholesale price)
1 x Brown sachets (200) £10 (wholesale price)

PLEASE TRY TO CONTACT WHOEVER YOU CAN OR MY FAMILY WILL BE LIVING ON THIS FOR THE NEXT 10 YEARS!!!
email: contact@blueskyethinking.org

Walk On

Many of you will know how hard I am finding it to leave the house at the moment. It is very difficult to acclimatise and know where one 'fits in' after witnessing such suffering and sadness. I want to strive to be a better person, not only building the Charity, but to allow Jesse and Flynn to lead a happy life. In so many ways I have come a long way since Skye died, but in others I am still processing everything that happened to him and miss him more now than ever before. I am fragile, lost and numb. My heart has been broken into so many pieces that it will take a very long time to be able to 'feel' again. At the moment, I am 'going through the motions' of life and that will just have to do for now.

I feel very proud of myself for having plucked up the courage to go and see my friends at the Oxford Operatic Gala this weekend. This is the first non Charity, social event I have been to without having a panic attack. I have been so utterly touched by the warmth, generosity and unwavering love these amazing people have demonstrated towards myself and my family over the years and feel extremely lucky to have such deeply caring (and talented) friends. You may all be a bunch of 'lovies', but when the chips are down, you are like a family, "Who could ask for anything more"?

The Gala was incredible and I had to record your last song as it moved me to tears. Never a truer word said (or sung). Thank you from the bottom of my heart for continuing to be there for all of us. 

Hope you will enjoy some of these memories we have shared together. I miss you!

(If you are reading this from the family blog email - there is a video to accompany this post. Click Read in browser below.)

My, She Was Yar

We promised a happy post and here it is. Yesterday proved, once again, to be an incredibly emotional day, but one that filled us all with a great deal of pride as we witnessed the unveiling of the newest addition to the Abingdon School Boat Club's fleet. When we were first contacted to say that the boys had decided to name the new boat after Skye, it was slightly overwhelming. Just a week before Skye's diagnosis, he and I had made a trip down to the Boat House to watch the boys training. He loved being on the water and to be able to follow the boys up and down the Thames on a launch brought him a great deal of joy. Back in 2012, we had also attended the Henley Royal Regatta Finals day together as a family to watch the Abingdon crew win the Princess Elizabeth Challenge Cup for the 2nd year running. Skye was on the bank chanting ABINGDON! It made him feel so proud to be part of the celebrations.

Captain of Boats, Tom Digby, spoke about Skye and how he had inspired the boys throughout his illness and about their desire to remember and honour him. The Abingdon School Boat Club flag was then drawn back to reveal Skye's name and before the boys took it out onto the Thames, it was dowsed in the obligatory Champagne.

I managed to hold my emotions in check (just), to thank the boys for their kindness, and that we as a family felt so humbled, grateful and privileged that Skye had been honoured in this way.

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The Time Has Come To Say Goodnight

Skye loved singing his favourite songs before bed. It is always a treasured time for any parent.

Tonight, please kiss your children like it could be the last time you ever get to do it and you will have a glimpse into the world we live in every day.  You will be enriched and your child will feel loved.

Jesse, Mummy and Daddy miss you so much Skye - bedtime will never be the same without you.

"I Feel lonely without Skye in my bedroom. I want to make a doll of Skye so we can take it in turns to take him to bed with us." 

Jesse (4years)

Skye is discussed in Parliament Debate on Brain Tumour Research

The first ever Select Petitions Committee Report on the chosen topic of Brain Tumour Research, resulted in a packed public gallery and over 60 MPs debating in Parliament yesterday.
The overwhelming message was that the number of life years lost to Brain Tumours are greater than any other cancer, yet the funding is pitifully low. Ministers were humbled and shocked at the enlightening information they gathered in preparation for this debate and that Brain Tumour Research is now well and truly in the public eye.

I met some lovely parents today, all with desperate stories and I wish you all much love and strength. With the incidence of brain tumours on the rise, MPs Guy Opperman, Ian Stewart and Nicola Blackwood brought a fantastic level of clarity and understanding for the way forward for a despicable Cancer which claims more lives of children and young adults than any other. I am absolutely sure they will they continue to support us so that our children do not die in vain as we strive for better survival rates and a better quality of life post treatment.

With the incidence of Brain Tumours on the rise and the shocking fact that despite it being the cancer that claims most life years lost, it remains pitifully underfunded. This is about to change!

For the full 3 hour Debate: http://parliamentlive.tv/…/3211c3a4-ea0c-425e-8277-43c7a512…
 

Tweet or email your MP

If you are on Twitter, you can Copy and Paste this tweet:

We are glad to hear @Number10gov is going to address #BrainTumourDebate. The tragic fate of #SkyeHall cannot be allowed to repeat itself

In Westminster Hall this Monday 18th April 4.30pm, there's a debate on the Petitions Committee report into the issues raised by e-petition 105560 which many of you signed, on funding for research into brain tumours, led by Helen Jones. The report found that brain tumours are the biggest cancer killer of children and people under 40, but that research into them has been underfunded for decades. As a result, the committee concludes, survival rates for brain tumours - unlike those for many other cancers - have improved very little in the last 30 years. 

It has taken brain tumour charities almost 15 years to reach this point. Let's not waste it now! If you know someone who has been affected by a brain tumour please ask your local MP to attend the debate in Westminster and if they can't, to sign the EDM 1082 http://www.parliament.uk/edm/2015-16/1082We are not asking for the world, just that the distribution of cancer funding is apportioned appropriately.

Skye died due to side effects, which were not able to be shared quickly and efficiently among paediatric consultants  due to NO DATA COLLECTION SYSTEM for standard treatment protocols being in place in this country. He had the most common of all brain tumours. This is fundamental and must be addressed to prevent future deaths. We are supporting the Children's Cancer and Leukaemia Group (CCLG) in implementing a data collection system, but they will be requiring long term funding which should should come from Public Health England not from small charities struggling to make a difference. We will continue to play our part and fundraise, but we need to be met half way by the current Government.

To watch the Petitions Committee discuss the initial report in Westminster on Monday 14 March, please follow the link to the Parliamentary TV coverage.

For a short extract of David Cameron's comments in Parliament prior to Monday's debate Click Here

Sorry for the political tone of this blog post but we live to improve the future for children who face death well before their time and simple measures such as a data collection system will go a long way to helping prevent future tragedies. 

Template Letter for your local MP. Feel free to use all or parts of this template letter to send to your local MP over the next few days / weeks.

We love and thank you all for your continued interest and support for our family. Wish us luck for Monday!

 

Oxford Guardian's - Charity of the Year

*VOTE NOW* AS VOTES CLOSE THURSDAY 31st MARCH 2016

I was so excited and honoured to see Blue Skye Thinking has been nominated for the Oxfordshire Guardian's Charity of the Year Award, then I saw the other nominations and wanted them all to win! We hope Blue Skye Thinking will continue to fund much needed research into childhood brain tumours for years to come but as a Charity, this year will have been the most significant for us. It is the year we have had to go it alone without Skye here in person driving us. In his own words "Help doctors make other children better, even though they can't help me" will stay with us all forever. That will be our driving force! Thank you all for your continued support.

*Please Share*

http://www.oxfordshireguardian.co.uk/oxfordshire-guardians-charity-of-the-year-2016/

 PLEASE VOTE FOR BLUE SKYE THINKING - IT HAS BEEN AN EXCEPTIONAL YEAR FOR US!

Mother's Day

Thinking of all my lovely mummy friends coping with one less mother's day kiss today.

Very lucky to have been brought tea in bed by Jesse and Flynn this morning. Even more lucky to have my mum staying over to share a cup with! Thank you for existing Mum x

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

Thus far, we have discussed what happened to Skye and the deeply concerning matter surrounding the non-existent data collection for children with cancer receiving standard treatment protocols with:

Prime Minister David Cameron

Local MP Nicola Blackwood

Secretary of State for Health, Jeremy Hunt

NHS Medical Director Sir Bruce Keogh

Clinical Lead, National Cancer Intelligence Network (NCIN) Dr Michael Peake

Senior Coroner for Oxford Mr D M Salter

 

Today, we are finally heading to London to have a much anticipated meeting with Mr Ashley Gamble, the Executive Director and Dr James Nicholson, the Chairman of the Children's Cancer and Leukaemia Group (CCLG).

We are determined to move this from a unanimously agreed concept, to a tangible, fully functioning system. Watch this space….