Family Blog

BLUE SKYE THINKING REACHES £120,000 GOAL TO FUND RESEARCHER

UncategorizedApril 29, 2015

We are very proud to announce that we have reached our target!!!!!!!!!!!!

Advances have been made to identify pathways at a molecular level in the hope that new treatments will eventually ‘do away’ with outdated chemo- and radiotherapies. Now is a crucial time for the funding of new research so that current findings can be converted into frontline treatment. The money raised by Blue Skye Thinking will have a very significant impact on this and we can get that one step closer to unlocking the science behind this devastating disease and one step closer to a cure.

We have informed the Northern Institute for Cancer Research, who work specifically on childhood brain tumours, that the funding is now available and will be working closely with them in the coming weeks to advertise the position. The Research post will start on 1st September. We want supporters to have a personal connection with the researcher so will be following them closely and reporting snippets of their progress on our family blog. Less than one per cent of national cancer research funding goes towards brain tumours, the No. 1 cancer killer in children.

This is just the beginning for us. There is still such a long way to go. In the past four months, three other children that we got to know on the Ward in Oxford have died as a result of brain tumours or as a result of the treatment. It again re-iterates the desperate need for better treatment protocols and the way they are monitored, which bring about better outcomes for the patients and their families. The last year has been such an emotional roller-coaster for our family from Skye’s death last August to now. By reaching this first goal, something positive has emerged from such an awful situation. It is heartening that so many people are now choosing BST as their charity to support and that commercial organisations are also getting on board and raising valuable funds for tangible outcomes and we look forward to working with many more supporters in the future.

We would like to personally thank everyone involved.

Follow this link to watch Wednesday night's BBC Oxford News Broadcast!

Glow in the Park in Memory of Grace

UncategorizedApril 28, 2015

Disney on Ice without Skye

UncategorizedApril 26, 2015

Matching JoJo Maman Bebe Brothers

UncategorizedApril 20, 2015

I received a JoJo Maman Bebe catalogue though the post today who's latest promotion is entitled #JoJoTakeTwo. For those of you who don't know me, you may have gathered from photos posted that I was a huge fan of dressing my boys in the same gear (usually from JoJo). Seeing this multi buy offer with a photo of two brothers with their arms lovingly wrapped round each other was like a knife through the heart.

TIP

My advice to any mothers with boys is to dress them the same as much as possible, especially in public areas. Not only does it have the advantage of being able to quickly scan the play park for one outfit to locate one's own offspring, but if the elder of the two is being somewhat heavy handed with 'play', onlookers, instead of looking alarmed and frantically scanning the mums to find the one responsible for the "terribly rough child", see the outfits and pass the event off with a shrug and a smile saying, "it's alright, they're obviously brothers". Come on mums, you know I'm right!!

Jesse hero worshipped Skye and would never got dressed in the morning before checking what Skye was wearing and then insist upon the same. Although Skye used to roll his eyes, he secretly loved the fact that Jesse wanted to be just like him.

Our family will never be complete again when one of the two bros is missing.

Skye's #FridaySillySmiler Father Gives Birth...

UncategorizedApril 10, 2015

Life is like Chocolate Easter Nests

UncategorizedApril 05, 2015

Have you ever had one of those moments when you stand still and think, “This is not how I hoped life would turn out”? If the answer is yes then you might be interested to hear that I have always considered myself to be like the ‘wobbly man’ from the children’s classic Noddy books, forever being knocked down but just springing back up again, because that is what we do.

Today, I made chocolate nests with my son Jesse. We had carefully bought the ingredients, gone to three shops to get mini eggs (who doesn’t stock enough mini eggs at Easter?) and found a beautiful picture of what our nests were going to look like on Pinterest. Well, I don’t know if you have ever attempted to make the easiest recipe in the world, but our finished article was a gloopy bowl of overcooked chocolate, separated butter and what looked liked an oil slick of syrup floating unappetisingly on the top.

This would have bothered me in the past but now; having experienced true tragedy in life, I can at least shrug this miniscule mishap off as inconsequential, right? WRONG! Trying to deal with the smallest of chores or set backs when you are grieving the loss of your child takes immense effort.

It was a year ago today that Skye and I were leaving our two month stint from the isolation ward in hospital, with a potentially cancer free scan! It was the first time in months I felt I could breath again and my beautiful boy was back home for Easter. This Easter, he is dead and he will be for all the following Easters, forever. I honestly don’t know what matters and what doesn’t any more. Some days I take on the top medics and politicians just seeking the truth and to fight for a better future for children diagnosed with the no.1 cancer killer in children – brain tumours. Other days I just stare into space wondering what on earth we are here for. Most of the time however, I simply feel guilt, for somehow not protecting my first born child from the horrors of cancer, for not being as attentive as I should be to Jesse while focusing on the Charity, not being able to engage with my lovely friends and family but above all, guilt for still being here while Skye is not. I want to swap places with him every day; he should be here, not me.

I am trying, I am, but every day holds emptiness. Jesse and I had fun together making our nests, but in his words “Skye would have liked to do this with us mummy but he can’t now.”

This wobbly man is down for good but will try hard to conceal it better in the future for the sake of those she loves.

p.s. Please don’t wish anyone grieving a “Happy Easter”, a simple “Thinking of you” will do just fine. X

OX5 RUN

UncategorizedMarch 29, 2015

Back in Hospital

UncategorizedMarch 26, 2015

Amazing Team Effort for Reading Half Marathon

UncategorizedMarch 24, 2015

Skye's #FridaySillySmiler - Wear a Hat Day

UncategorizedMarch 20, 2015

Mother's Day

UncategorizedMarch 15, 2015

"Of all the rights of women, the greatest is to be a mother."

Lin Yutang

I would rather however, pay tribute to my own mother without whom, I would not have managed to provide the life I so wanted for Skye and Jesse. My mum's reaction to the news she was to become a Granny for the first time was every bit the emotional, if somewhat overexcited one I had expected and every step of the way, she shared my wonder and pure joy of everything about Skye. I learnt so much about parenting from her - mostly good, with the odd memories of my childhood, such as feeling rushed, which I wanted to avoid, when it came to be my turn to 'be mum'!

One of the most wonderful times I can remember was when Mum and GT hit retirement and went on a 3 month cruise to celebrate the end of their 'paid' working life. Andrew, Skye, Jesse and myself overlapped their trip around the world and had realised without their knowledge, that we would all be in Auckland, NZ for 12 hours on the same day. We arrived at the harbour at about 5am so as not to miss them disembarking and Skye was yelling to all the old cronies on the ship "Excuse me, have you seen my Granny?" To the reply, "What is her name?" Skye replied quite factually "Granny".

We managed to keep hidden until she had left the ship and as soon as Skye saw her he raced up and gave her the biggest hug in the world! As you can imagine there was a mixture of complete shock, elation and tears of happiness. A few of the shipmates asked them after, how long it had been since we had all last been reunited expecting the answer to be at least two years or more and seemed quite taken a back when the truth was actually only two months! This is just a beautiful summary of just how close we all were.

Times are incredibly hard and I know how much harder I am making them for others due to my totally withdrawn and depressive state. I just can't help it and I appreciate how hard it must be, to not only be grieving for your Grandson but also your daughter who seems completely lost to you now. I am sorry for all of this, but I do love you and I want you to know that this Mother's Day! X

Well I could make this post about me and say how much I would dearly like this day to be over. In our house, Mother's Day was a very special day for Skye, and of course what mother doesn't like to feel joy and be appreciated by her loving offspring? Now I feel that privilege has been ripped from me and yes I know I should be grateful I have my darling Jesse but this will NEVER take away the fact that what I really want more than anything in the whole world is my first born baby who changed me from a woman into a MOTHER and made me a better person.

Skye adored Granny (as does Jesse) and this is certainly not because she lavished them with expensive gifts, in fact Skye used to point out on numerous occasions that Granny needed only to bring a pencil, some blank paper and her head when she visited! She gave so much more than materialistic gifts, she gave the gift of her time, unconditional love and energy.

I think any parents with a very sick child on an oncology ward would agree that their mothers have been rocks in terms of practical support. I can only imagine what it must have felt for my mum to have been told the devastating news about Skye's cancer. To be so emotionally involved, yet to be on the periphery of what is going on, AND to have to suddenly have 2 year old Jesse to care for almost full time was something she managed amazingly well without burdening me with her own feelings of desperation.

I always knew I could keep my own emotions in check for the sake of Skye's emotional well being but being much more of a 'heart on her sleeve' kind of girl I was worried if mum could do it too, but she did. She made every second count with Skye and used to be a great source if inspiration to stimulate him, and when his voracious appetite for a constant stream of new activities used to, on occasion, leave me like a cracked desert, she stepped in. Her ingenious thought on our canal holiday, where she pre bought fish from Sainsbury's to tie onto the boy's fishing rods, left Skye with a beaming smile from ear to ear. A lasting happy memory for us all!