Sunday, September 30, 2012

Haley... forever 16.

One of the hardest parts of being a part of the pediatric cancer worlds is all the loss. I'm not sure why it happens this way, but at our hospital most children seem to earn their wings in the summer months. Last summer 12 children we knew passed away. This summer 9 more. Every loss hurts so deeply. It is hard enough to be a child fighting cancer, but to lose your friends in the battle alongside you is devastating. Watching cancer take children from their parents and tear apart siblings cuts deep in a place that never heals.

Camp Brenner is full of heroes- so many courageous cancer kids. God gives these children such strength, wisdom, compassion, and courage. They are all heroes to us. But every once in a while God sends a special child to be their hero. Haley Parker is one of those.
 
Haley is one of those kids who lights up a room. As soon as you walked in you knew she was there and you were drawn to the light and joy that radiated from her. She is a child of God and she takes that calling very seriously. She has an amazing gift for sharing her faith and HOPE with everyone around her no matter their age.
All the kids know her and love to play with her. She can relate to a toddler just as easily as a teen.
The young ones love to play and color with her. (She is a big coloring book fan!)
 
 And for so many of the older teens Haley is there to help them walk through the cancer world and face their fears, struggles, and pain with grace and God's power.She even had the idea to have a prom for all the teens in treatment and her dream came true...
God gave Haley some amazing tools to accomplish her mission on earth. Aside from her radiant beauty and smile, she has an infectious laugh, playful spirit, and the voice of an angel. Haley is never afraid to burst into song- wherever she may be. The clinic, the art room, the halls, her hospital room are always filled with this incredible voice. And sometimes if you were lucky enough Mr. Colin is around to provide instrument backup. 
And we love all the chances we get to hand her a mic and let her shine at parties...
 
fundraisers...
 
 
Haley's battle with stage 4 Ewings' Sarcoma was long and grueling. The massive pulmonary damage and metastisized cancer made breathing difficult and singing a miracle. She even sang at her mom's wedding and led worship at her church! Haley endured 22 months of treatment and this past May was told she did not have much time left. She spent the next weeks in the hospital being every bit Haley making all her many visitors laugh with her funny voices and skits, songs, art, and precious spirit.
She spent precious time with her siblings, parents, family and friends...
But in the end, God called Haley home and healed her Himself in heaven on June 20th (her sister's birthday).

There are some people in our lives that are so vibrant it feels impossible to imagine they are gone. Haley is one of those. It has been so hard to accept the fact that she is not still here. Every time we are in the hospital a part of me hopes she might still be there. I can still hear her voice singing as if she were standing right here. I know heaven's choir gained an amazing angel. I fully expect the clouds will part one day and Haley's beaming face will be singing down on all of us. 

On August 31, we had the privilege of celebrating Haley's birthday with her family and friends.
Her mom, Donna, passed out balloons to all of Haley's little friends.
We prayed together and sent them flying.
And as they drifted up the balloons seemed to dance in a choreographed design. They all gathered together in the sky and stayed that way until we couldn't see them anymore.




Haley, we are so proud of you for the way you fought your own battle with determination and never failing HOPE. But even more incredibly we thank you from the bottom of our hearts for all the little warriors you helped along the way. No matter how bad you felt you put on a smile and a song and took off down the hall to brighten another child's day. You so boldly shared your faith in love with everyone you met, young and old. But most importantly you lived out the faith you professed in everything you did. Rest in peace, Haley... forever 16.

Kisses for Kate Ball

I had the honor last weekend of being asked to speak at the Kisses for Kate Gala. 
Precious Kate was a leukemia patient and went through treatment at Brenner's with Julia. She fought a long, courageous 3 year battle before earning her wings in September 2010. 
Her family, godmother, and friends lovingly stayed by her side every step of the way and helped Kate's dreams come true every chance they could. Kate had so many big dreams for herself, her family, and all the other kids fighting cancer that foundation was born to fulfill these wishes. They have done some incredible things for so many families. One of Kate's dreams was to bring the Beads of Courage program that she had used at Duke during her bone marrow transplant. In March 2011, the legacy of her dream came true.  Her parents, Susan and Joe were there with Kate's beads...
 
Julia was one of the many in attendance that day for the kickoff.
Julia's beads gave her an amazing voice to talk about the battle she had been through and to tangibly tell her story.
We had no idea how much those beads would come to mean as her struggles continued and she faced GI surgeries, tough procedures, daily medications, tube changes and tissue burns, and counseling for her PTSD issues.
She was so proud to be sharing her beads and her story that night.

Her strand now measures 8 feet and contains almost 300 beads!
The ball was Kate's idea. She wanted to have an "after treatment party" where the girls wore gowns and tiaras and the boys wore 'tortillas' (tuxedos). It was a magical night that we know Kate would have loved- amazing decorations, beautiful dresses, music, dancing, a delicious dinner, incredible auction and raffle gifts, and lots of friends and family.
Ms. Stacy introduced the Beads of Courage program and how it is used at the hospital.
Then I had the chance to share what this program has meant in our lives and how it has helped Julia to cope with her ongoing medical struggles and find the courage to do the things she dreads and take pride in her accomplishments.
There is also a sibling program that Carter has used that recognizes some of the complex emotions and experiences of the siblings of these cancer warriors.
It was an very emotional night and many tears were shed as we remembered, honored, and looked forward. There were several other cancer warriors there, too. The bonds between Camp Brenner families runs deep and every glance, hug, and encouraging word speaks volumes. We all talked a lot that night about the emotional scars of this world- the post-traumatic stress issues, the long term effects and surgeries, the losses, the relapse scares. Sometimes it just helps so much to share the burdens with people who are carrying the same ones.

We also had the chance to meet a lot of new people who came out to support the foundation. I was touched by how many people shared their hearts, struggles, prayed with us, and were changed by what we shared. Thanking God for the amazing opportunity to share what He has been doing in our life.
The evening continued with auctions, raffles, music, dancing, and fun...

By 10pm, Julia was all partied out...

Saturday, September 29, 2012

Arts for Life Princess Ball

Last Sunday, Arts for Life had their first annual Princess Ball fundraiser. Arts for Life has been a part of Julia's cancer journey from the very first day of diagnosis until today. Their amazing staff and volunteers bring art and music therapy to families facing some of the hardest battles of their lives. Ms. Betsey and Colin will always be so dear to our family. We were so eagerly anticipated this new annual event.

Julia was very thrilled to be invited to attend and took her friend Claire with her. They were so sweet getting all dressed up with their dresses, makeup, and nail polish. Off to the ball!
While they waited for everything to begin, Julia spotted a prince around the corner...
Princess Breanna, one of our beautiful Camp Brenner kids...
Each of the girls was announced, given a rose, and escorted to their table...

Then the princes came around to each table to request a dance with each princess.
They loved it!

Eating their cupcakes with a visit from Ms. Teen NC...
The girls with Jasmine and Ms. Betsey's daughter, Emmi...
Julia and Cinderella...
One last dance by the princesses and princes. Thank you Winstom-Salem Festival Ballet for making so many little girls dreams come true!
The girls with Ariel...
They politely asked Aurora to get out of the picture so they could pose with Prince Phillip!
Thank you Arts for Life for a amazing afternoon with my princess!
Princess Ansley loved the dancing...
Still beaming from all the fun...