Remembering Rhema

I have to completely change gears from my last few posts now to share some thoughts about a friend of mine who will never be forgotten. Today marks the one year anniversary since cancer took her life.

I've been meaning to share the story of my friend Rhema Butler ever since she passed away last June. She's been in my thoughts ever since and my heart will always ache for her family. I guess I've been struggling with the idea of how I could possibly do justice to such an amazing young lady in mere words. The answer to that is that I simply can't of course. Wrapping one's brain around the devastation caused by childhood cancer is impossible. Cancer is relentless and delivers nothing but pain, suffering, worry, grief, and sorrow to children and to their families. And it happens so completely indiscriminately.  It's like the "Cancer Cards" are just floating through the cosmos and then merely handed out at random with an accompanying card on plain stationary with the inscription, "Here you go...your life now sucks."

Rhema was just 14 years of age. She was diagnosed with a rare type of pediatric sarcoma 3 1/2 years ago. She was a warrior, plain and simple. The pain and suffering that she endured was unfathomable. But at the very same time, her will to live and determination to enjoy each day was unwavering. She was loved by all who met her and most deeply by her adoring family. Her mom Kirsten was with Rhema every step along this path and was always there to catch her, guide her, hold her, listen to her and most of all love her.

I met Rhema through my friendship with forever 10 year old Henry Xu who passed away in December, 2010. Henry was the biggest little man that I have ever met and he knew Rhema through Ronald McDonald House. They shared a lot of good times together and they also shared a similar type of cancer. The day I met Rhema was at Henry's memorial service. There she was in her wheelchair accompanied by her mom Kirsten and she arrived to pay her respects to a young boy who died from the same disease that she was then fighting. Rather than shy away from such a sad day Rhema attended and paid her deepest respects to her friend. In one of the most heartbreaking moments that I have ever witnessed, Rhema scooted up to Henry's little open casket and paused for a few minutes to say goodbye...the strength that she showed in that moment was astounding and I am still in awe of it to this day.

A little while later just outside of the church sanctuary, I was introduced to her by my goofy camp name, Mooselips, and she knew that I was Henry's friend and had taken so many photographs of him. She asked me, "Would you take some pictures of me sometime?" I responded, "Sure, how about now?" This was the first photograph that I ever took of Rhema.

and moments later, Rhema with her mother Kirsten

When I would visit her in the hospital what struck me most was her quirky, inquisitive voice, and careful but deliberate choice of words. Actually that's not altogether true. Come to think of it, it was her honesty that stands out the most. She was genuine, real, and unpretentious and even while spending time with me, a person she hadn't known for very long, she was completely herself. Her gift to me was not holding anything back just because she had a visitor in the room. At times she would cry out in excruciating pain and Kirsten would just hold her until the pain subsided.

 In between pain episodes Rhema liked to look out the window at all of the construction going on for the huge addition to the hospital. She and Kirsten had all kinds of theories about the construction workers and discovered that their "cuteness quotient" was directly related to their particular job. They were just cracking me up!

Sharing a laugh with big sister Kirsey

The quiet casual moments never seemed to last very long though. Sadly, Rhema's constant companion was pain, and trying to manage that was a full-time job for Kirsten. I just kept thinking that a cure has GOT to be found because suffering like this was completely unacceptable.

One day I stopped by the hospital to visit and Kirsten had just stepped out to do an errand. The nurse had called Rhema and asked if she wanted a visitor. Without even asking who it was she said, "Yes!".  It was in the middle of the day but Rhema was laying by herself in almost total darkness with the blinds drawn. Across the room the small TV was turned on but Rhema wasn't really paying attention.We wound up having the nicest visit together that day and just talked about any and everything. She even let me take this photograph.

Most other 14 year old girls in May of 2011 were making their plans for summer, with the end of the school year coming up. In fact, Rhema did do a little of that. I gave Kirsten the application information for Camp Goodtimes and the two last spaces of the summer would be available for Rhema and her older sister Kirsey. That was such a simple dream...just to go to camp with her sister. Tragically, during the last week of May last year, Rhema's condition started to deteriorate rapidly. Still, she loved being with her family and even loved having visitors. She was so tired and groggy from all the medication that she could barely keep her eyes open, but she tried anyway because she just didn't want to miss anything.

Rhema with her big brother Kyran

Kisses from her beloved niece Hallie

Just days before she passed away, she wanted to go for a little "outing". In other words, she wanted to get out of her bed, get in her wheelchair and just do a little lap around the cancer ward. Can you just even remotely imagine that being the most adventurous thing that you could do on a given day? Bless dear Rhema's heart, and Kirsten's too. Kirsten would do anything for her dear "Ladybug" and they did go for a "roll" that day. One little person that they wanted to visit was a fellow cancer patient, cute little 4 year old Mia, who was one of Rhema's favorite people. Mia lit up when seeing that Rhema was cruising around. Tragically, Mia passed away this past April at the age of 5. Another monumental loss for the world.

Rhema's dear friend, sweet Mia.

Rhema wasn't just loved, she was adored. She always had her mother right beside her and there was always someone there to hold her hand. She was fiercely protected until the very end.

Rhema was and still is an inspiration to so many. One incredible friend, Jacob, within weeks of meeting Rhema for the very first time, was inspired enough to start the wheels in motion to create a Guild for Children's Hospital. His dream came true with the formation of "Rhema's Reality".

Rhema's Reality on Facebook

Jacob, Rhema's Reality founder

Rhema never asked for much. She just wanted a life. And she truly deserved one. This Ladybug just wanted to fly and not be held down by anything. That was a simple wish. Despite her cancer she was growing up at record pace, at times exhibiting the wisdom of someone far beyond her years. The thing that never changed was her deep love for her family and most especially for her mother Kirsten. In the most heartfelt tribute I've ever seen, Rhema thanks Kirsten for all she has done for her. Kirsten posted the video on Facebook and I've shared that on my own page. My Facebook

Rhema had a smile for anyone and everyone no matter what she was going through at the time. Her grace under such terrifying circumstances was astonishing. Throughout her struggle she was genuine, honest and compassionate and she held her family and friends close...so closely and tightly in fact that even though she is no longer physically here, she became a part of all those that loved her, forever.

I'll always be thankful for that one little moment when Rhema just wanted me to take her picture. The friendship that followed with her and her family is one that I will always cherish.

Thinking of you today dear Ladybug.

Pineapple's big night!

Saturday night was a triumphant night I must say for my dear friend Leslie "Pineapple" Krom. On that evening she had a "stare down" with cancer and she won convincingly. Cancer didn't even have a chance. Pineapple stood up strong and proud and made an indelible impact on all of the guests in attendance. She also had time to kick off her heels, on the dance floor as well as during her speech!

Here is her speech in its entirety;

Pineapple speaks!

$47,000 was raised for Camp Goodtimes immediately after Pineapple's speech...unbelievable.

It was a very special and memorable night and Pineapple certainly was glowing. And in that regard, here is some photographic evidence.

Thank you Pineapple for being so willing to share your very personal story.

Pineapple with her #1 supporter...mother Lynn.

And with her favorite photographer!

Heidi, Anna, Leslie, Lynn and Karen

Anna "Jiffy" Davies flew all the way out from NY for Pineapple's big night!

Pineapple with some of her Camp Goodtimes family.

NINJA!!!!!

The Museum of Flight is a pretty spectacular venue.

Pineapple speaks

The long standing ovation

Time to dance with Pigtails and Star

Pineapple and Star

You know it's a great night when even the band wants to party with you!

Pineapple

Today is a huge day for my dear friend, Leslie "Pineapple" Krom. Firstly, today across the country millions of people are opening up the July 2012 issue of Cosmopolitan magazine and there she is in living color and taking up almost all of page 118. On the opposite page is her story as it was told to another dear camp friend, Anna "Jiffy" Davies who writes for Cosmo. Leslie's honesty amidst the incredible burden of her cancer journey is bold and beautiful. And when the headline on the page slaps you with, "Do I look like I'm dying?", you indeed do a double-take looking at the photograph. Leslie isn't "dying", she is living and she is paying attention to each and every moment of this gift. Her timetable may be different but that only intensifies her experience more. Wasting time for her is inconceivable and that is such a beautiful way to see the world.

 The backstory that will NOT be read by millions is pretty classic and has such a beautiful Camp Goodtimes twist. A few months ago Pineapple wanted to come out to my studio so I could take her portrait. Since uncertainty looms over her future she wanted me to capture her in this stage of her life and I was excited about having her come out. Having known her for 15 years through camp and having seen the struggles that she continues to face it was absolutely my pleasure to spend the afternoon and evening hanging out and taking pictures. Her beauty is as genuine as it gets. If you were totally blind (like some of our campers are) you would "see" it and feel it immediately too.

 We had a wonderful time that day and it even included some pyrotechnics. At one point I asked my son Miles, "Monkey Boy" as Pineapple knows him, to run and grab our last Christmas tree and put it in the pasture about 40 behind Pineapple and told him to torch it! He was thrilled by the idea and the photos were 'ablaze' with color (sorry, couldn't resist that one).

 At about the same time as we had planned our shoot, the incomparable Anna "Jiffy" Davies from Camp Goodtimes and now Cosmopolitan magazine approached Pineapple about telling her story in the magazine. Pineapple loved this idea because she is determined to make a difference in this world. This spotlight would enable her to affect untold numbers of people by perhaps helping them look a little more deeply at their own lives and at the same time develop more compassion for others. Jiffy told the editors at Cosmo that Pineapple's friend was a professional photographer and so there might already be a great photograph to use in the magazine. Cosmo instead put together an all day photo shoot in Seattle with a photographer, assistant, make-up artist etc. The result? The editors wound up picking one of the photographs that I took in my garden. I did have a wonderful assistant that day, and that was a 15 year friendship with someone I really care about. In that photograph, she is smiling at a friend, and that's absolutely the coolest thing. The editors don't know that, they just liked the photograph better. Funny and fitting that they picked one that had a little bit of something extra in it, and that intangible was the connection between the people in front of and behind the camera. That's a true portrait.

I'm so happy for Leslie that she was able to tell her story and get it out to the world in such a spectacular fashion. I'm also so thankful that Jiffy is such a ninja of a human being who in between getting novels published (blast you, you overchiever!), still had time to make this happen.


OK...and that's just the FIRST reason for this amazing day, the second reason is even more incredible. Tonight, Pineapple will be giving a speech before 300 people at the American Cancer Society's Hope Gala. Her speech will be just prior to the paddle raise which will fund Camp Goodtimes directly. I produced a short video in which I will introduce her to the attendees and then she will take the stage. In the audience will be three full tables of Camp Goodtimes supporters including her dear mom who has been beside her every single step of the way. Pineapple's words will surely resonate in the minds of the guests long after they leave the event.

I am in awe of Leslie's strength of character, her determination, and her willingness to open her heart to others. Tonight is going to be a night to remember and I am thrilled to be there to capture in photographs the proudest moment of her life. So far that is. This girl has got a lot to do and who knows what the world is in store for next!

Go Pineapple Go!!!