How Not To Cry

Gold Ribbon Craft

My favourite ‘cancer mom’ blogger is Nicole Scobie. She just gets it like only the parent of a kid with cancer can. Her latest entry is called How Not To Cry.

I had to read it. I have become an expert at not crying. I rarely cry in public anymore. I do my best to be ‘numb’. It is possible to be so tired of crying you can control it, even in the most difficult situations. If you ever see me not crying an wonder how I am doing it maybe you will also see that kinda clued out look on my face as I disconnect what is happening from my emotions. It’s a copying skill many parents have had to develop just to get through the days, weeks, months and years we are under intense stress because our children’s life is being threatened by disease.

How Not To Cry

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NICU Minions for Special Lil Ones

Knitting Rays of Hope


These little guys are going to be included into our special delivery to the NICU in Japan for our service men’s families. These hats filled our box up and we will be mailing that package out very soon. We can’t wait until they receive all of the hats. We hope that they bring them many smiles. We want to make sure that each of these hats were filled with an extra dose of love to say thank  you to all the service members who risk their lives for ours.

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Brave Olivia…

climbing up the polka dot tree

What an amazing girl, so strong and brave. It is such a gift to leave for her family- the words and song, her voice. Her song was so meaningful… her voice was so beautiful and hard to hear.  It brings me back to Madeline and the changes in her voice and tone… what an amazing girl.  Olivia will change the world… her heart, soul and voice will live forever.  Her family has so much hard to face with out her, missing her.  They will find great comfort in knowing that she is remembered by so many, that her voice lives on and that she will change the world.

❤ Olivia Wise



Help Support her family and their mission-  (

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‘Brave’ Pediatric Oncology Patients at UMinnessota’s Amplatz Children’s Hospital

Investigating Illness Narratives

“Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave”

The lyrics of Sara Bareilles’ song Brave struck me. They reminded me of the purpose behind my research and my Honors English thesis: to give children and adolescents a chance to tell their own stories. And, to give all those involved the opportunity to listen, to better understand how these children and adolescents cope with the complex, mysterious illness of cancer. In my mind, the bravery arises in how children are talking and writing about their intimate experiences with cancer.

From Stronger to Roar and now Brave, my emotions are mixed about these charged music videos about the sphere of pediatric oncology. While the Stronger and Roar videos ask for donations to support childhood cancer research in the caption, this video of Brave only links to additional information about the programs offered…

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Olivia Wise’s Last Song

Gold Ribbon Craft

It was all over the news. A teenage girl, dying of inoperable brain cancer, recorded a cover of Katy Perry’s “Roar”. After it went viral Katy Perry, herself, responded with a video message.  We all were so touched by Olivia’s sweet voice. We loved that Katy reached out ……. and then we were all devastated when it was reported that Olivia was gone. Lovely that Katy tweeted about her sorrow at hearing the news. The simple truth about this Simple Girl is Olivia died because of the lack of childhood cancer research. Nothing could be done for her. Her doctors knew her cancer was inoperable from the beginning.

Just days before she died Olivia’s parents posted this video of the song Olivia wrote. I was stunned at the haunting beauty of Olivia’s voice and words. Please listen…..then pass it on. This is the song Katy Perry and the…

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The Real Meaning of the Festival of Trees

Play Ground | Primary Children's Hospital Blog

The Festival of Treesby Linda Meier

Thirty-eight years ago, my family went to the Festival of Trees for the first time. It was 1975. Over the years, attending the Festival of Trees became a fun tradition. The Festival of Trees was our family’s kick-off to the Christmas season as our five children enjoyed the beautiful trees, music, scones, and of course, Santa. It wasn’t until 1990 that I came to truly understand what the Festival of Trees is all about when our only daughter, Nicole, asked a simple question. “Can we do a tree next year to help the sick children at the hospital?” The question took me by surprise. You see, SHE was one of those sick children at Primary Children’s Hospital.

A few days before Nicole’s 9th birthday, I noticed a small lump at the base of her neck.  A doctor removed it and after a quick biopsy told us…

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Counting Our Blessings

The Children's Cause Blog

thanksgiving bannerv3

Because Thanksgiving is a day of reflection, we couldn’t let it go by without telling you how much you mean to us. As we count our blessings today, we hope you know you’re among them.

You make it possible for us to spread our voice and our cause throughout the halls of Congress and into federal agencies. You make it possible for us to achieve real policy progress in research, treatment and survivor care.

You make it possible for us to improve the lives of children with cancer and survivors. Thank you!

What are you most thankful for today?


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The nostalgia of the holidays

God'sfaith's Weblog


Is this the last Thanksgiving with my son? How could I not ask myself this question? It is so bittersweet for me this season. I have let go of expectations and chosen the higher road, to live with life as it goes. I ask myself this question every time we have an occasion or holiday. Will it be the last? Will I remember his face? His outfit? His joy? His preferences? His very way of being?

I did not feel very holidayish this year. We went to the diner and ate with John John’s grandfather. It was a nice meal with many protests over the fact that the diner did not serve macaroni and cheese. yes, macaroni and cheese. That’s John John for you.

He’s on the weight down slide again. (lost 10 lbs, gained 4 1/2 lbs, lost 1/2 lb) Not interested in eating much these days. I didn’t…

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Super Jon- A Local DIPG Warrior

Knitting Rays of Hope


We found out about Jon a few weeks ago, from a friend whose son is Jon’s friend and schoolmate.  To support Jon and his family, please visit his Facebook page (link).

From his Facebook page:

Jon is 6 year’s old and was diagnosed Oct. 17, 2013 with an inoperable brain tumor known as DIPG (see link below). There are less than 300 cases per year world wide, and occur usually only in children. The average age of a child diagnosed with DIPG is between 5 – 9 years old.
Jon is currently receiving radiation treatments at CHOC and is doing
very well.
Jon is in the first grade and loves to be with his classmates. Jon loves doing all the normal activities a 6 year old boy does. He is know for his great smile and energetic spirit. Jon Jon is a blessing to all who know him!

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