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!!!

Julia

When 11 year old Julia Gebert was just 3 months old, her mother Pamela noticed that her eyes weren’t tracking the same way that her older brother Samuel’s had when he was a baby three years earlier. She and her husband Steve took Julia to the doctor and a diagnosis was arrived at very quickly—Julia had a brain tumor. It was called an optic pathway glioma. The tumor was in a dangerous position and it still is all these years later. Three different types of chemotherapy have been used and the family now has experienced over decade worth of doctors visits. The tumor is stable thankfully but it cannot be removed and instead simply has to be perpetually watched.   

In infancy, this tumor rendered Julia almost completely blind. She can notice shadows, which does assist her a little bit when navigating a familiar room, but she has been permanently disabled by this tumor.

Julia has been attending Camp Goodtimes since she was a little girl at age 7. Sending her that first year was no easy decision for Julia’s parents. Now, four years later, she still looks forward to camp every year and she is still little. She travels a long way to get to camp, coming all the way from Alaska where 10% of the Camp Goodtimes West campers live. She makes the trip every year with her older brother Samuel. This year for the first time, her younger brother Andrew (age 7) was also able to attend. Cancer attacks entire families and siblings also benefit greatly from the camp experience. All the kids at camp gain strength through the bonds of their common experience.

Julia is a treasure. When she's at camp, in many ways she becomes our camp mascot because of her petite stature, pixie-like qualities and enormous heart. Julia just melts people with her smile. In fact, I’m surprised there’s so much ice in Alaska with Julia’s ability to melt stuff! She sees the world like few others that have ever been to camp and she is genuine to the core. She doesn’t judge people on superficial qualities. She doesn’t care what you look like, how old you are or how fashionable you are…she just cares about you. She soaks up the compassion of others and then returns it tenfold. She needs people. She needs an arm, a hand, a boost, a perch, an explanation and a shared path. And she appreciates it immensely. When she gets excited, she just bubbles over and her small body just cannot contain the energy, which causes her to start dancing in place while wearing an impossibly huge smile. If you are lucky enough to witness this in person it will make your day.

The last time I had the pleasure of seeing this was at the end of last November. Thanks to the American Cancer Society’s Anchorage office, I was offered a plane ticket to come up and be the surprise guest at the Alaska campers’ Christmas party. A one day Alaskan adventure. I had never been to Alaska before and I was thrilled by the idea. The Seattle area kids for over 20 years have had a holiday cruise donated to them by Argosy Cruises and a few years ago, feeling like they were missing out on some holiday fun, some camp counselors from Alaska, ‘Goonie’ and ‘Wiki’, started organizing a party for the local kids. Local in Alaska does mean something a bit different than in our neck of the woods. Some families even flew in from Fairbanks to attend. At the party, the kids gathered to watch a video of me sending a greeting from the staff in Seattle, at the end of which I burst through a door with camp music blaring. The kids did a huge double take and then completely freaked out. When Julia “saw” me she just started doing her dance right away and I quickly joined her and so did everyone else. After a wonderful visit with all of the kids, Julia and her family came to say goodbye. Sam came up to me and handed me a beautiful framed Native Alaskan themed drawing that he had done. 

I was so touched to be able to receive such a thoughtful gift on my first trip up north. My next gift was something entirely different. I said goodbye to Julia’s parents and then I bent down and hugged all the Gebert kids at the same time. Julia then said something while buried in the middle of that hug that made my whole epic one-day Alaskan adventure worthwhile, “I don’t wanna to let go.” She loves random classic moments (we definitely have that in common!) and when she’s having fun, she doesn’t want the fun to end. No wonder she loves camp so much.

The Gebert family.

At Camp Goodtimes, Julia has gained another family and she has no limitations. She rides the tire swing, goes swimming, rock climbing, tandem bike riding and she’s even driven a 120 foot boat. She also loves to sing and thinks nothing of sharing a song with the entire camp. A few years ago, Julia came up to me and asked to sing a song at dinner. I lifted her up so everyone could see her and she started singing “Amazing Grace”. The dining hall that was usually alive with clanking cups and rattling silverware grew instantly silent. Julia sang slowly, softly and deliberately and finished with this verse:

“I once was lost…

but now, I’m found…

I was blind…

but now I see.”

I only wish that the rest of the world could see as clearly and as beautifully as dear Julia. Bless her sweat heart.

Sidenote: Julia’s mother Pamela sent along a note of thanks for what Camp Goodtimes has meant for her children. In her note she said;

“Caring for a sick child affects the entire family and siblings are also taken for a ride on the scary roller coaster that families of children with serious illnesses experience. Camp Goodtimes teaches kids to not let their disease define them. At camp, they are not the ‘poor little sick child’. They are all too busy having a fun time and living life! These days, Julia plays the violin, tends her own vegetable garden, loves to hike and ski, and goes fishing and camping with her family. For Julia, being blind is not an insurmountable obstacle. She considers it a mere nuisance and does not let it stand in the way of having fun and trying new things. We are enormously thankful for the wonderful and loving people who care for our children while attending camp. Camp Goodtimes experiences give back lost pieces of a childhood. Camp is only one week, but the changes and confidence last a lifetime.”

-Pamela Gebert

P.S. Here's a link to a short movie trailer style video I edited while I was heading to Alaska and showed the kids at the actual party. They especially enjoyed the part where I was attacked by the bear! Mooselips' Journey to Alaska

Finding treasures

Looking through old photographs for a friends memorial service is a solemn task but it can also be punctuated by great moments of discovery. I was digging through an old hard drive from 2004 the other day searching for any old photographs of Panda from camp that I would be able to share with her family.

I found some random photographs of her with her cabin mates waiting to go on the cruise and posing after a classic skit. Suddenly the memory of the "Fear Factor" skit came rushing back to me. Panda is pictured second from the far right (below) and she had just shoved her head into a bowl of chocolate pudding that was supposed to be some other gross thing. Thankfully I can't remember what exactly, only that the kids in the audience were howling with laughter.

That's Panda, second from the right in orange with pudding all over her face.

As I continued to look for pictures a thought came to me. I wondered if there was a chance that out of the 120 kids at camp that week if perhaps she was one of the dozen or so that signed up for a "Free Choice" photography activity that I led on the last day of camp. I found the folder and there it was...jackpot. I had completely forgotten that young pre-Panda Kathryn had been one of my portrait subjects.

I was thrilled to find these. Panda was 13 and already doing camp at full speed, making friends right and left, cracking people up and completely getting into the spirit of camp whenever and however she could. My last great find the other day was this shot of Panda and Piglet at the carnival. The colors of her hair and make-up were a fitting match for her vibrant personality.

Who knew at that time what a big part of camp she would become and how many peoples' lives she would end up touching, at camp and everywhere she went.


These photos are a treasure, and so was she.

Panda

Kathryn “Panda” Bradley passed away yesterday just three days shy of her 21^st birthday. Her cancer journey started in 1999. She did not “lose the fight”, or “lose the struggle” with cancer. Rather, she won the battle of living life to the fullest. She had the secret of life down at the beginning. Cancer slowed her but never overshadowed her incredible ability to shine on, celebrate and enjoy life, and just attract friends, love and affection like a giant magnet. She created joy, happiness and laughter everywhere she went. And I’m not just saying that. I have photographic evidence. I did manage to get her to pose for a picture every now and again but usually she just exploded into laughter or silliness, and how wonderful that was to witness.

 

She was one of the most petite people that I have ever known and when she told me how much she loved my “short jokes” the game was on. “Oh, hey we can’t start yet because Panda’s not here.” “Anyone seen Panda?” “PANDA, hurry up and get over here!” The entire time of course Panda would be standing two inches away from me and she would instantly erupt into laughter. Or… “Hey kids you can’t go to dinner yet, your counselor’s not here…oops, didn’t see you there Panda!”

 Every smile or hug from her was a gift of the most genuine kind. The smile was from ear to ear, punctuated with a laugh that was all her own. When I hugged her she fit just perfectly under my arm. She was much shorter than my 11 year old daughter but was one of the biggest people that I will ever know. Losing her is such a profound loss for her Camp Goodtimes family because she was such an enormous part of the fabric of what makes camp so special. She just sparkled and possessed a distinctive flair that was completely wrapped around and inextractible from her deep understanding  for what Camp Goodtimes was. Nervous about going to camp when she was "little"? Not Kathryn. I remember one year when she was absolutely the last kid to arrive at camp. I think it was actually a day late. She said she didn't care at all what cabin she was in, she was just thrilled to be there.

Bumper and a little Panda in 2003

2008

2009

Panda was truly beautiful and as well as beautifully true. She was beautiful in the purest sense because just looking at her made you happy. She was also true, genuine and real without a shed of pretense. How could you be pretentious while dancing around in a blue dinosaur costume? That’s just impossible.

Panda’s family stood by her side from the very beginning. They showered her with love and surrounded her with hope and possibility. Panda’s brother Richard, or as his camp friends know him, Loop, wins as I told his mother yesterday “Brother of the Year” award in my book. He dropped absolutely everything in his life over these last months and never left Kathryn’s side. Recently he would sit at her bedside and read Harry Potter out loud, for hours on end. The love that these siblings had for each other was so obvious. Seeing them interact at camp was wonderful to behold and offered a small glimpse into their special and unique relationship.

Camp Goodtimes was Panda’s home away from home and the kids and staff were her extended family. Camp gave Panda the vehicle to express herself as only she could and to be universally loved. Camp does that.

My dear friend Karen Gerstenberger describes this special aspect of Camp Goodtimes beautifully and with deep personal understanding. Karen’s daughter Katie attended camp in the summer of 2007 and passed away just a few months later. The following is an excerpt from her message of sympathy to Panda’s camp family yesterday;

“The impact of Camp Goodtimes goes beyond what I understood when our children attended in the summer of 2007. It is much more than a week of fun and craziness which helps children who have cancer (and their siblings) realize what cancer cannot take from them...it goes far beyond that. Camp creates an extended family of people who really and truly care about each camper and staff member, forever. Not just for fun, but in sickness and in health, in remission and in relapse, until death and afterward. I know this, because I have felt this love and caring directed toward our family when Katie died, and I have seen it come alongside other children and their families when they are dying. It's not just about the Goodtimes - though there are plenty of those. It's about caring for people who touch your life briefly, yet touch your heart for all time.”

Panda did just that. She touched hearts wherever she went and at camp the effect was exponential. To know her was a gift. When she was little she was actually given the Hawaiian name “Kahiwalani”, meaning “Gift from Heaven”, proof that good things come in small packages.

I wrote to Panda’s mother Carol yesterday and struggled to find the right words to express my gratitude for the pleasure of knowing her children, and finally arrived at these;

 
 “Thank you Carol for your three beautiful gifts to this world, Kathryn, Richard, and your recipe for life, ‘Love, Laugh & Live’. Of course dear Panda would want us to turn life up as loud as we can get it. I know for an absolute fact that her Camp Goodtimes family will. Panda is alive and well in the hearts of all of those lucky enough to stumble into her path in life and who are so much the better for it. The amount of love, laughter and living that Panda created and experienced in life is astounding. It's as if she was on a mission to live a 100 years in only 21. She clearly exceeded her goal. Kathryn will be missed dearly, remembered forever, and always will be celebrated with a smile.”