TeamNEGU Blog

Written by Jessie’s big sister, Shaya Rees

The reasoning behind JoyJars can be simple: it is hope and encouragement wrapped into the smile that shines across the face of a child fighting cancer.

There are no strings attached, no questions asked, nothing wanted for our end as those who represent and carry on what Jessie left us. 

Encouraging a child fighting cancer lies way beyond each of Jessie’s JoyJars.  JoyJars are an incredible tool that can invite us into a family’s battle; we can step into the trenches of childhood cancer, ready to be there through all the questions, anxiety, stress, anger, the confusion this disease can bring.

The JoyJar also gives us reason to celebrate, celebrate the hope, the love, the strength, and courage that come along for the ride as well. It’s never just facing the dark moment and feelings, but balancing the light ones too!

We get the privilege and honor of running towards our courageous families who are fighting cancer together.  We get to run towards them with support, encouragement, a hug, or even just a listening ear.

On December 1st, 6 others and myself (Jessie’s big sister) went to the Children’s Hospital of Orange County (CHOC).  We were there with a little more than a JoyJar.  We wanted to give every family on the oncology floor a $1,000 check a part, of our 25 Days of Love campaign.  Everything that morning seemed to be pushing us away from what we were going to do though.  We arrived and the power was out.  The elevators were down, no communication could happen between the receptionist and the 5thfloor, and it felt as if we were maybe going to have to turn around. 

The power clicked on though, and we were able to make it to CHOC’s 5thfloor together, with our JoyJars in hand.  As we rode up the elevators, Cory, Jana, and myself were hit with the stark reality of cancer.  One year ago, we rode these same elevators down after seeing doctors’ rush into the room of one of our sweet courageous kids who was fighting for her life. We would learn by the following morning that just 4-6 hours after being on the same floor as she was, she would join Jess in heaven.

I still remember how those moments felt like they were in slow motion, but also sped up all at once.  This day really pushed those emotions and memories to the forefront for the three of us JRF employees who had been there almost a calendar year earlier. Amber, CHOC special events coordinator, told us that two families lost their children over the night on the oncology floor.  No longer would we be handing out checks to 37 families like we thought the evening before, we would all be balancing the somber mood of the 5thfloor with the joy and hope we were trying to bring to families who’s children were still here.

Over the course of the next three hours, our group, compiled of three incredible All-Stars, the Chairman of the Board, and three JRF staff, would hand out and deliver $33,000 to the 33 families on the oncology floor.

I asked them if they could share snapshots of their most memorable moments, or “highlights”, but as Collie reminded me, these really weren’t “highlights” in the positive sense, they were moments that left a mark on our hearts forever though.

For myself, I will always remember trying to find the right words in the first room.  I handed out the first check and was nervous beyond belief to try and find the right words. How do I express that this is just because we want to bless their family?  How can I make sure they know we care and are here for them?  Will they know what to do?  Everything washed away though, as I was hugging this courageous mama through tears of gratefulness on both ends.  She was immensely grateful for the support, and I was extremely grateful for the opportunity to see what Jessie started to expand in a way I never imagined.

Jana was able to meet the aunt of a courageous boy she’s heard about through the NEGU community of families she has the honor of supporting. Though we didn’t get to meet her nephew, we learned of a story of intense hardship, but perseverance beyond belief. The courage and strength found inside these families inspire us all daily.  The aunt was told about the foundation from another courageous family and now Jana was able to connect with her in person.  Watching this interaction was a comforting highlight for Cory recognizing how this “was other families talking about NEGU and what we do and rallying around families.  When families get a diagnosis like this, it’s like one of their first lines of defense is running towards us for emotional support”. 

There were some rooms at CHOC where we worked through a language barrier, but one room in specific left a lasting mark on Kaitlin. She’s been with us for over 160 hospital visits, but she reflected on a moment watching a grandma, with a reaction that was just “hands to the mouth were just so joyful, and I think too even though there was a huge language barrier, there wasn’t, you could just read from their emotions.  That was a cool common ground that even though I didn’t know what they were saying, you could just tell they were through the moon.  She just came out and was hugging everybody”. 

The emotions we felt within each room had to be subdued within the corridors of the 5thfloor though.  As stated earlier, we found out at the start of the visit, that two children passed away over the night, “which to some degree doesn’t impact our visit but it absolutely did because emotionally we understood what was happening on the floor, but we knew we were there for other reasons, right? It is consistently hard to be joyful like you would think to be joyful on paper – laughter, fun, excitement, smiles, all that sort of stuff  – but we were having to balance that the moment we walked out of a room because we couldn’t do those things out of respect for what we knew was happening amongst the floor” Cory said as he remembered back. 

One of the most beautiful things for me though, knowing exactly how the family still grieving on the floor was feeling, was that I had someone there with me who knew the same too.  Collie not only is chairman of the board but also most importantly, is the courageous daddy to a beautiful little girl named Maddie, who is with Jessie. The entire group wanted to still provide this family with a check, no JoyJar or other paperwork, just a check to help them too.  This moment was one we knew Collie was with us for, even though none of us knew it would be something we’d be walking into.  Collie offered to give the family their check, and it is the one moment that provided him with “a deeply meaningful and a great reminder of how powerful our presence can be in all parts – even the darkest ones – of a family’s cancer journey”. He was taken back to experiencing deep emotions from his own memory after losing his daughter, and I couldn’t be more grateful that he was able to be there and sit with a family in their loss and grief, knowing he’d been there too.

We realized that these checks really are for mom and dad. They are a gift for them, without any strings attached.  If you were to put yourself in their shoes, it’s incredible to realize what a burden $1,000 could be lifting off their shoulders.  The parents are warriors.  They are the face of brave, just like their kids are, but in a different way.  In my dad’s book, he talks about practicing being brave in the mirror, and even though I didn’t recognize it then, I saw it in many parents that day.  From the dad who couldn’t look at us, who had to let his wife talk while he sat, turned, and looked to the floor with his face in his hands, hiding the emotion we could see.  Kaitlin said that moment was almost like watching as “we melted away concern, it just seemed like he had a prayer that was answered”. 

Or the mom that Cory watched “was almost emotionless (after receiving the check) and she didn’t cry or have a ton of words. She was just, ‘thank you, thank you, thank you’, and then we quickly shifted our attention back to the kid…Jana came in and just gave her a big hug and she kind of got glassy-eyed and for a moment.  I was like ‘oh this is what your dad was talking about’.  I don’t think she wanted to show that sort of emotion in front of her two girls who were sitting in the room.  It was like she knew she had to be strong for her daughter and she didn’t ever want that (crying because they were getting financial help) to like the reason for that stress”.

The most beautiful part of these checks is that we don’t need to know what the family uses them for.  Each family and their situation is completely different.  We aren’t telling them to go buy Christmas gifts or use the money for medical bills, but if they want to, that’s obviously incredible! Whatever way they decide to use it, we support 100% knowing that the decision they make means more to them than we could ever know, and we are humbled knowing that we can play a small role in that.

So how can you possibly wrap up three hours that completely changed our lives into one word?  This is how…

Surreal. Emotional. Insane. Humbling. Memorable. Miracle.

More than ever, I know we are all proud, humbled, excited, and motivated to continue supporting our courageous families.  Thank you Jessie for what you left us!

P.S. To help a little of the flow for this read, I didn’t put everyone’s titles or names.  Here is the group who helped make December 1stspecial.

Cory Tomlinson – Manager of Program & Sport Engagements

Jana Perry – Family Resource Coordinator

Collie James – Chairman of the Jessie Rees Foundation Board of Directors

Kaitlin Sandeno Hogan – Jessie Rees Foundation National Spokesperson and 4 time Olympic medalist in swimming

Skip Schumaker – Team NEGU All-Star, San Diego Padres 1stBase Coach, World Series Champion

Johnny Stanton – Team NEGU All-Star, Minnesota Vikings Fullback

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