Sunday, September 7, 2014

Jessie and Her JoyJars

September is Childhood Cancer Awareness month.

Believe me, I do not need a special month to keep childhood cancer front and center. We live it everyday--just like so, so many other families. Families that are part of an exclusive club that they never wanted to join.

Before Harrison was diagnosed, cancer in general, and childhood cancer in particular, were just kind of nebulous ideas. Sad, tragic even, but not overly personal. I would have seen the gold ribbon Facebook posts/profile pictures and scrolled down much like I would do with pet cruelty posts or the unending college football posts that occur every fall. Passionate posts/pleas from some, but not really affecting me on a personal level.

Of course, all of that changed a couple of years ago...

Like any other horrible, potentially life threatening illness, cancer brings details and fears and events to a family that no one could ever prepare for. Some families put their details out there, in the form of social media posts, or Caring Bridge updates, or prayer requests. Others keep their info close to the chest, meting out details on a more selective basis. Everyone copes the best way they know how. But if you are in the club, you quickly learn to read between the lines for 'the rest of the story'. Such sad, sad stories, regardless of the ultimate outcome.

I think that is what drew me to the book Never Ever Give Up (the inspiring story of Jessie and her JoyJars), written by Erik Rees (with Jenna Glatzer) about his daughter, Jessie--and the rest of his family. It is their story of how they discovered Jessie's rare form of brain cancer when she was eleven years old. It documents the next steps--telling others, chemo, radiation, travel, school, 'normal' activities, praying, side effects, more faith, less faith.

And then it tells the story of how Jessie died. The reader knew this was going to happen early on, just like her parents had been told from the beginning of their journey was the certain medical outcome given the nature, location and progression of her tumor. There was not a miraculous healing. It was not a glorious, peaceful passage of time and events. It made my heart heavy to read through the details of their story, but here is the deal--it was so real. The feelings, the pressures, the what-ifs, the heartbreaking prayers, the guilt, the sadness, the never ending changes and adjustments, the crushing fatigue--the reality of cancer, especially if that person/family member dies.

Because that is what too many people with cancer do--they die. And their shattered, forever altered families are left trying to just continue to live.

I have read (and blogged about) many books/stories/blog posts about childhood cancer in the past couple of years. Good books that talk about God and faith and the nitty-gritty details of chemo and radiation and their side effects. But here's the thing--as good as those particular books are, and as tough as their stories were and continue to be, their particular children did not die. And as gloriously amazing as that is for them, the questions of faith and God and healing and restoration still linger for those who had different outcomes, and thus cannot fully relate to those stories.

This book helps to bridge that gap, and provides a glimpse into one family's struggles with these huge issues, and whose prayers were not answered in the way they desperately hoped for. It offers a different perspective. This is refreshing and is so very needed.

Never Ever Give Up is full of great insights and quotes.  Here are just a few that stood out for me:

All I had asked for was to become a good father. God had blessed me three times over with beautiful children, and I had tried to live up to my end of the bargain by being present for them in ways my own father never was. I supported them, disciplined with love, tried to understand their individual needs and personalities. What Stacey and I had built was a loving and faithful family. Why would God let one of my children be harmed? I didn't have the answers, and it left my mind reeling. All I could do was pray for a miracle, and that's what I did, night and day. Please, God, heal my daughter. (Page 40)


Jessie felt lucky.  he was scared, but she'd already found a purpose. I decided to ride in her wake and feel lucky too. All of my family was together that night. We were all under the same roof and we were all okay. From then on, life would always be that simple. Every day that Jessie was alive was a good day.  (Page 50)


(After giving an update to a friend...)
"I don't know how you do this every day," he said.
"Me neither."
"This really sucks.
     It took me aback for a moment.  He had skipped right past all the platitudes that people usually lean on--all the words of comfort you say when you really don't know what else to say.  or two months, I was used to hearing "God has a plan," and "Hang in there," and "I'm sure she'll get through this"--and those were the same sorts of things I was saying too. But it was also amazing to finally hear someone tell it like it was.
     Because it did suck.
     It sucked that my daughter could barely walk anymore. It sucked that she was now salivating so much that she carried a spit cup wherever she went. It sucked that she felt so lonely and limited. It sucked that she was terrified to eat and that my other kids had been traumatized to watch her choke.  It sucked that my Jessie had brain cancer. It all just sucked!


Doctors don't tell you everything when you're dealing with pediatric cancer. They tell you about the things they're approved to do which mostly means things that the Children's Oncology Group (COG) recommends because they've already been tried (and, uniformly, have failed at doing anything more than extending a child's life by a few months). One thing I learned along this path was not to give up control of my daughter's treatments. I knew that if I just obeyed everything the doctors told me, then my daughter would die, just as all of their previous patients had done. Were they even really looking for a cure? Or were they content to just keep trying to same old things that didn't work because it was too much trouble to get approvals and funding to try something that hadn't been tried before?  (Page 135)


I did feel upset with God. I wrestled with myself between wanting answers and knowing that God doesn't need to explain himself to me. The praise didn't fall as easily from my lips when I felt this scorned. I wanted to do right by him, but I also wanted him to do right by me.  (Page 143)


And last but not least...

There was Jessie, with two tumors in her brain, walking to raise money for a 'grown-up' cancer.  Where were the walks for pediatric cancer? Where was the race for that cure? Seeing the huge strides in breast cancer awareness and funding was inspirational to us because we've seen in our lifetime massive improvements in early detection, survival rates, and treatment options, as well as a new openness in discussing what was once a taboo subject. What they've done is phenomenal, and I don't want to take any of that away from them, but I wanted some of that same awareness shone on DIPG and other cancers that afflict children. Its easy to look at it as just a matter of numbers and statistics--there's more money in curing cancers that affect more people--until it's your child and you're being told that not only is there no cure now, but a cure isn't even on the radar.  It's like being told your child is not important enough to save. There are no beaded survivor necklaces for DIPG because there are almost no survivors.  (Page 158)

One way that the Rees' are honoring Jessie is by continuing a project that Jessie began almost immediately after her diagnosis, called JoyJars.  JoyJars are packages filled with toys, games, and love for other kids with cancer.  It was a beautiful, giving projects that Jessie started, and has grown into a huge ministry in the time since her death.  The book tells about the JoyJars and the foundation called The Jessie Rees Foundation (NEGU:  Never, Ever Give Up).

So beautiful.

I checked out the NEGU website, and was thrilled to find that I could not only register for Harrison to receive a JoyJar (there is a section for kids who are post treatment and currently show no evidence of disease), but siblings can also receive one, even if their family member with cancer is no longer here to enjoy their own JoyJar. This is such a unique organization, apparently modeled after a unique family and their precious Jessie.

Let me just add this for the record--I hate cancer.

However, I do love this book and this organization.  You can find out more info at their website, and Facebook.  Go here to register someone to receive their own JoyJar.

Disclaimer:  I received a copy of this book from Handlebar Hub, in exchange for my review.  No other compensation was received.

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