Childhood Cancer

Beautiful Caroline “Calle” Cronk introduced me to DIPG, and on that date back in 2012, an advocated was born. We need to do better to make sure that little girls like Calle get the chance to grow up. 

#GoGray for these twelve precious children who we will remember always.
Benicio, Marcellus, Owen, Caitlin, Charlie, Constanza, Aubreigh, Leila, Melody, Jade and Sam.
It breaks my heart that I can run out of words but never run out of the children taken by dipg. Each one a dearly loved child, no one cares about numbers or statistics until they fall on the wrong side of them. They truly believe that it can never happen to them. They buy a ticket with hopes of a win, not realising they have more chance of their child getting dipg than winning the lottery. They believe subconsciously maybe, if they don’t look or listen, that their child will somehow be immune, as if cancer or the knowledge of it is catching. 

You taught me how to love you by
The way that you loved me;
And by your unseen sustenance,
To see what you could see.
You gave to me through who you were
The gift of what I am.
Your pride in me is now my pride;
Your faith, my caravan.
Your life does not conclude with death,
Nor will it end with mine,
For all the lives I touch, you touch,
And so on through all time.
#DefeatDipg #DipgWarrior
You taught me how to love you by
The way that you loved me;
And by your unseen sustenance,
To see what you could see.
You gave to me through who you were
The gift of what I am.
Your pride in me is now my pride;
Your faith, my caravan.
Your life does not conclude with death,
Nor will it end with mine,
For all the lives I touch, you touch,
And so on through all time.
#DefeatDipg #DipgWarrior

DIPG is een monster. Heel dichtbij maak ik mee wat deze ziekte voor impact heeft op het leven van Zeph en zijn moeder Emma Louise.  
Gelukkig zijn ze dapper en sterk en vechten ze met al hun kennis en kunnen tegen de tumor die in Zeph's hersenstam is genesteld. 

DIPG is a monster.  I have experience the impact of this disease on the lives of Zeph and his mother Emma Louise.
Fortunately, they are brave and strong and fight with all their knowledge and can withstand the tumor that is nestled in Zeph's brain stem.
We can help them by becoming aware of the seriousness of this disease, which is incurable according to regular medicine. By focusing our thoughts on Zeph's healing. Or by helping finance an alternative treatment.
Emma has opted for an alternative treatment that combines cannabis oil (CBD) with high-quality food. This treatment has ensured that the growth of the tumor has stopped. Together we can stop this monster and give Zeph a future!

Dylan

#GoGray for Dylan, he should be here with his family but dipg stole him away like a thief in the night. If you do nothing else today, read this heartbreaking post from Dylan’s family and tell someone new about dipg and the severe lack of funding, research and a cure. We are sorry Dylan, you deserved so much more. 
#DIPGAwarenessDay May 17th...
Dylan was here Last Friday, he was continuing breathing on his own, vitals nice & stable, wasn’t on any narcotics for pain, the RSO im sure relieved any pain he couldn’t tell me he was in, he seemed calm we remained so hopeful. But May 11th he was called to heaven, I tried to bring him back, firefighters, paramedics tried & tried but that was it, our time with our precious angel ended. Saturday at 12:36pm he was pronounced gone...

Words can’t EVER come close or describe the way I feel, losing my child is the worst ever unexplainable, indescribable deep pain I’ll ever experience in my life. No one except those who’ve lost their own can imagine the agony, misery & grief we feel. I’m beyond heartbroken, I’m forever broken. 

My Dylan Castiel, you were such a beautiful, handsome, happy, silly, fun, generous, selfless, friendly, smart boy with a great personality and hilarious sense of humor. You were such a patient, amazing, caring, protective, loving, gentle, big brother, you’re missed immensely. We miss absolutely everything about you, hearing your little brother asking daily when we’ll see you again, when you’re coming back, how much he misses you, and hearing Aaliyah cry and saying she wants to go to heaven too, breaks me even more each time, they lost their best friend. 

You never complained of everything they did to you, all the doctor visits, you were such a trusting & forgiving boy. I hope you know how proud we are, you fought so hard and with lots of bravery, I wish we could’ve saved you. The guilt I have and questions and what if’s I have keep running through my mind, I wish we would’ve known and started trying lots of things sooner. You deserved a full life on Earth, We need more angels like you in this wicked world. 

Heaven keeps getting more beautiful every day, gaining these beautiful lives, I get a bit of peace within this sorrow knowing you’re there. You’re free from this monstrous brain cancer, you can see again, eat, run, play, talk , laugh, dance & sing again. You will forever change me, you make me want to be a better person, and I will be, because I want to spend eternity with you, I miss you terribly, I can’t wait to hold your warm divine self again, kiss, love, nurture, hear your beautiful voice, see you dance, see you run & play, I need to hear “mommy I love you” once again... 


For those of you that have donated towards his funeral, we will forever be grateful, any amount is appreciated, we want to honor him in a monumental way, he always wanted his siblings & us to be taken care of, he deserves a beautiful memorial. So sad how expensive it is but I know how loved he is still and we’ll find a way ❤️✝️ 
Words can’t EVER come close or describe the way I feel, losing my child is the worst ever unexplainable, indescribable deep pain I’ll ever experience in my life. No one except those who’ve lost their own can imagine the agony, misery & grief we feel. I’m beyond heartbroken, I’m forever broken. 
My Dylan Castiel, you were such a beautiful, handsome, happy, silly, fun, generous, selfless, friendly, smart boy with a great personality and hilarious sense of humor. You were such a patient, amazing, caring, protective, loving, gentle, big brother, you’re missed immensely. We miss absolutely everything about you, hearing your little brother asking daily when we’ll see you again, when you’re coming back, how much he misses you, and hearing Aaliyah cry and saying she wants to go to heaven too, breaks me even more each time, they lost their best friend. 
You never complained of everything they did to you, all the doctor visits, you were such a trusting & forgiving boy. I hope you know how proud we are, you fought so hard and with lots of bravery, I wish we could’ve saved you. The guilt I have and questions and what if’s I have keep running through my mind, I wish we would’ve known and started trying lots of things sooner. You deserved a full life on Earth, We need more angels like you in this wicked world. 
Heaven keeps getting more beautiful every day, gaining these beautiful lives, I get a bit of peace within this sorrow knowing you’re there. You’re free from this monstrous brain cancer, you can see again, eat, run, play, talk , laugh, dance & sing again. You will forever change me, you make me want to be a better person, and I will be, because I want to spend eternity with you, I miss you terribly, I can’t wait to hold your warm divine self again, kiss, love, nurture, hear your beautiful voice, see you dance, see you run & play, I need to hear “mommy I love you” once again... 

For those of you that have donated towards his funeral, we will forever be grateful, any amount is appreciated, we want to honor him in a monumental way, he always wanted his siblings & us to be taken care of, he deserves a beautiful memorial. So sad how expensive it is but I know how loved he is still and we’ll find a way ❤️✝️ 
Words can’t EVER come close or describe the way I feel, losing my child is the worst ever unexplainable, indescribable deep pain I’ll ever experience in my life. No one except those who’ve lost their own can imagine the agony, misery & grief we feel. I’m beyond heartbroken, I’m forever broken. 

Lucy

Click the photo (below) for link to Lucy's slideshow on 'Love For Lucy' Facebook page.

Dylan

Click banner (above) for link

In 2015, when Michael was fighting DIPG, Seven Locks Elementary School held a Yellow Day for him to show their support by wearing his favorite color. After spending special time in his classroom, our family walked through a hallway filled with yellow, Big Hero Michael signs, love, clapping, cheers, smiles and well wishes. They embraced Michael and made him feel so special - a kindness we will never forget. In the blur of the day, I'm not sure I read all the signs for Michael, but I can see so many in the pictures. "We care about you!" "You are brave!" "Our hero!"

You can't tell how much Michael loved the day from the pictures because the evil DIPG stole his smile, but he absolutely loved it. The boy was made to be the center of attention, though I wish that it was not for this.

Tomorrow, Seven Locks Elementary is again having a Yellow Day to mark DIPG Awareness Day and remember Michael on the 4th anniversary of his passing. This is so meaningful to all of us, and especially Michael's little sister, Lila, who is in 1st grade. We are so thankful for our school and community.

Wherever you are on May 17 - do something to mark DIPG Awareness Day. Wear a Defeat DIPG or any DIPG awareness shirt. Wear a shirt that honors any DIPG child who has touched your life, or any foundation that fights for kids facing this disease. Wear yellow for Michael. 

Be visible. Stand up for our kids. 

Thank you so much to all who will recognize this day across the country and world. We are seeeing more and more participation every year, and we know that this will continue to grow.

Together, We Will Defeat DIPG.

#DefeatDIPG #DIPGAwarenessDay #Together #GoldandGray #EveryDay

Dear Bill Ross,

The Government has responded to the petition you signed – “Raise awareness and fund research into Diffuse Intrinsic Pontine Glioma (DIPG)  ”.

Government responded:

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. This includes funding for childhood brain tumour research.

DIPG is an aggressive, and hard-to-treat childhood brain tumour. It is a truly heart-breaking burden for any family to bear. Research is crucial in order to make more progress.

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. This includes funding for childhood brain tumour research.

Funding will be invested through the National Institute for Health Research (NIHR) to support a wide range of research from early translation (experimental medicine), through clinical, and on to applied health and care research. In essence this will support the translation of laboratory discoveries into treatments and better care for patients, including children. 

We are relying on researchers to submit high-quality research proposals in this very difficult area. To encourage such applications we have released a NIHR Highlight Notice on brain tumour research asking research teams to submit collaborative applications building on recent initiatives and investments. The highlight notice appears to have led to an increase in applications and these are now being considered.

We are also working closely with research funding partners such as Cancer Research UK, the Medical Research Council, and brain tumour charities, who fund research into new scientific discoveries. We stand ready to translate these new discoveries as quickly as possible into new treatments and diagnostics for patients via the NIHR.

We are working closely with our research funding partners, and other stakeholders, via the Tessa Jowell Brain Cancer Mission, which will meet several of Dame Tessa’s campaign requests to improve research and care for adults and children with brain cancer.

Department of Health and Social Care.

Click this link to view the response online:

https://petition.parliament.uk/petitions/239638?reveal_response=yes

The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.

The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee

Thanks,
The Petitions team
UK Government and Parliament