Tuesday, November 30, 2010

One of Henry and Caity's favorite places

Camp Goodtimes this, Camp Goodtimes that...what is this Camp Goodtimes that I'm always talking about? The easiest way to tell you is to show you the photographs that I take every year. I heard this Michael Franti song recently and all I could think about were the kids from camp. I'm sending this slideshow to Alaska tomorrow so that the campers from Alaska can watch it at their Christmas party this weekend. If you are interested in supporting Camp Goodtimes please go to the website at www.campgoodtimeswest.org.



Just one floor down from Caity is 10 year old Henry who attended camp in June of this year. I've been lucky enough to see him and his mom quite a few times recently. He is the same age as my daughter Alex who he always seems to ask about.

Henry is struggling right now and I just wanted to post a few photos of him so you could keep him in your thoughts and prayers. He creates smiles, laughter and a little havoc every where he goes and those are qualities that I truly admire in him.

Henry was excited to see Alex when we visited a few days ago. Alex delivered a panda doll that my son Miles picked out on his recent trip to China. Our visit was relatively short but it was fun to hear Henry crack up when I tried to pronounce Alex's full name backwards, Ardnaxela, which sounded like some new dietary supplement of some kind.

He is a tough little guy and is putting up with so much right now. Yesterday I heard him say, "This is the worst day ever" which just broke my heart. I wish there was a magic wand I could wave to make his pain go away so in the meantime I'm still looking for a few spare billion dollars to go towards cancer research...

Caity's progress

Caitlyn went in for her major surgery last Friday and after some very difficult days and knowing that there are many difficult days ahead, still she is smiling, joking, sculpting strange little animals out of puffy clay and showing dramatic improvement over the last few days. Her strength after a 10 hour surgery is mind-boggling.

I was there last Friday to "see her off" to her surgery and took this picture of her surrounded by her loving and supportive family, mom & dad, Misti and Scott, and little sis, Makenzie. Caity looked so good and optimistic. After a customized rendition of "Always look on the bright side of life" that Caity, Makenzie and I sang for the assembled family she was led off to surgery. What a terrible thing for a kid to have to deal with.

Caity is indeed on the mend and looking forward to getting out of the hospital. This photo was taken just two days after her surgery! I just can't believe how great she looked. She is one amazing kid and I hope that she continues down the road to full recovery as smoothly as possible.

Tuesday, November 2, 2010

An update on Caity

Caity at Camp Goodtimes, summer 2010

(The following is an update from an earlier post and was written for an American Cancer Society Wine Auction newsletter that supports Camp Goodtimes)

13 year old Caity Bell has taken a much more different road to growing up than most children. Her route was not chosen by her or her family, but by cancer. She has been battling cancer since she was just 7 years old. At that time she was officially diagnosed with Metastic Solid Pseudopapillary Pancreatic Cancer. She underwent abdominal surgery to remove the cancerous tumor and then would have scans every 4 months to make sure it hadn't come back. This went on until she was 10 years old; three straight years of wondering and anticipating that next scan and then breathing a sigh of relief when it showed nothing.

Caity's life changed dramatically again when on a subsequent scan the doctors found that the cancer had come back with a vengeance. It was everywhere in her abdomen, from her stomach lining to her spleen and liver. After a nine-hour surgery to remove all the cancer that they could find, they just had to wait, knowing that it would probably come back again. And it did, a year later. This time, they had to take out most of her pancreas, causing her to become diabetic. She also lost her spleen, causing her to become more prone to infections. Throughout this fight the doctors are still confused by her cancer. In fact they haven't seen any other like it.

In the spring of 2009 Caity relapsed again. Her doctors felt that the surgeries themselves were causing the cancer to become more active so a different route was chosen. Since her cancer started in her pancreas she is now being treated with a chemo drug used to fight pancreatic cancer. This means more and more monthly trips to Seattle Children’s Hospital for treatment.

I first met Caity when she attended Camp Goodtimes in June of 2006. She has enjoyed attending every year since. At the end of June camp in 2009 she walked up to me and said, “Mooselips...would you come visit me at Children's Hospital sometime this winter?...cause my cancer came back." I was completely taken aback by the wonderful honesty of her question. How could anyone possibly answer “no” to a question like that?

I tried to keep up on her progress after camp but didn't hear of any Children's Hospital visits until after they had happened. Then last Spring, through the wonders of Facebook, I knew Caity was going to be admitted to Children's to, as her mom's status indicated, "Face the Monster". I was in Seattle and had tried to call them at Children's first but didn't have any luck so I just showed up. While checking in on the oncology floor, Misti approached, surprised to see me, and asked how I knew they were going to be there, to which I replied, "Facebook." She chuckled and added, " I LOVE Facebook". She then immediately took me back to where Caity was sharing a room with two other patients, the room being divided into three separate areas with curtains. Misti said to Caity, "Honey, you have a visitor!" Caity said in a very confused, bordering on upset tone, "Who?!?!" I then started singing a classic camp song, "Little Red Wagon" as I walked around the curtain. Seeing her face light up and to hear her blurt out, "Mooselips!!" just made my day.

I kept thinking to myself how amazing Caity looked AND how great her attitude was. Considering what she has been facing and what lies before her, she still can break into that enormous smile so quickly. I know that besides all the physical abuse that cancer has unleashed upon her, that coping emotionally is another thing entirely. I am confident that with her spunkiness and her tendency to start cracking up in an instant, that she has the ability to keep facing this with strength very uncommon for a 13 year old. I think it definitely helps to have something fun to look forward to, like Camp Goodtimes. She attended camp again this past summer and partied like a rockstar just like I knew she would. She continues to amaze me.

The other day Misti shared with me one of Caity’s most recent Facebook status updates. Caity wrote;

Cancer is like being stuck fifty feet under water. Eventually you lose sense of which direction you’re facing. You don’t know how to get out. Trapped. Frozen. You just want to be able to breathe again...”

Those are incredibly honest words coming from a young lady who has been facing “The Monster” for 6 years already. She will be facing it head on again the day after Thanksgiving when she is scheduled for an 8-10 hour surgery that Misti calls “very high risk.” While most kids in the end of November will be singing and living, “Over the river and through the woods…” Caity is just going to be trying to get out of a very different sort of woods.

Caity needs love and support from all angles right now as she bravely heads forward into another thicket so please keep her and her family in your thoughts and prayers. I really don’t know where her journey will take her but rest assured that her Camp Goodtimes family will be there to love and support her along the way.

Caity will always be welcomed with open arms at camp where life is celebrated to the maximum, regardless of any type of diagnosis. She lights up at camp. Her recent status update would never happen there. Instead of feeling trapped under water, she does a cannonball into it. She only loses direction during the heat of the whipped cream battle at the carnival. She doesn’t feel trapped because she is having fun with friends that are fighting the same fight and who understand her. The only time she is frozen is during the Polar Bear Swim...

And at camp, she does something effortlessly that we can all learn from…she breathes comfortably and deeply, and never takes a single one of those breathes for granted.