To understand the end, you have to understand the beginning.
My introduction to teens and cancer began long ago as a pediatric nurse. Until you are on your hands and knees at the side of their bed, holding their head as they vomit and vomit and vomit. Until it’s 2 am and you are fishing for that vein in an overpoked body, weary and bruised to the bone, because you have to get an IV line, and they are staring at you with tears in their eyes.
Until you have watched them take their last breath and open their eyes like to many do as they are about to cross from this life to the next….. and you see the look of joy and the lack of fear and the courage beyond anything you could ever have yourself…..
Until you have experienced that side of cancer….. well until I did at least….. this is why I feel the way I do about these kids. For this and many other reasons… this is why I understand the fight they fight and for this and too many other reasons…. this is why I hate cancer.
Cancer in this age group has a bastard of a tendency to be misdiagnosed, not diagnosed, diagnosed late. Just last night we discussed case after case of late diagnosis. Cancers that diagnosed 18 months ago, could have been curable. As parents we don’t look at teenagers bodies the way we do toddlers, so we miss bumps and bruises. Teenagers certainly don’t tell their parents about them.
As teenagers symptoms such as anemia is often lumped into “All teenage girls have low iron.”. That happened to Melissa. Or fatigue is blamed on mono. Leah had thyroid cancer for ten years that was blamed on mono. Then a giant mass was removed from her neck. 16 months later she was diagnosed with Hodgkin’s. That’s an awesome way to spend age 14-30.
Last night was the final assessment for our Teens Living With Cancer fitness program. On January 25th we cycled through these same assessments. You may remember from that night it got ugly. Real ugly. Like they needed anything worse to happen to them.
Hey there, you survived cancer. You missed so much of your teenage years, you lost your hair, your friends, some of your body parts. Here is how out of shape you are! Have a nice day!
They came back. For eight weeks they came back. Slowly they began making eye contact with me again. Slowly they started creating goals for themselves and as you and I have discussed before, they went from forgetting to set a weekly goal and forgetting to work out…… to working out daily and setting more goals than we wanted them to.
At the end of eight weeks we did the same assessment again. The results were so-so. for a variety of reasons. A variety of controllable reasons. They didn’t walk out of there disappointed…… they walked out of there hungry. Not satisfied. Wanting more. The next 8 weeks they were on their own, we didn’t meet weekly. We wanted to see if they would continue. The goal we set was the Lilac Festival 5K.
Last night they rocked their assessments. Jeremy pulled a total of 46 seconds off his timed mile. The girls chicked the guys in situps. They smiled, laughed and realized the efforts they had put in were worth it.Last night we also had a special guest come to see them. I am fortunate to have the platform of this blog and social media to share these teens with you. Many of you have been following them and their story for the better part of a year, a year ago is when this all began, in the planning stages at least.
They have captured your hearts in many ways and have inspired many of you to do something, and even to jump on board with us.
Professional triathlete and QT2 Coach Cait Snow came to town with her sister, Mikalea. Cait returned home on Monday from Ironman Texas where she placed second with a stunning 2:51 marathon off the bike, one of the fastest Ironman marathons for the women in Ironman history.
Cait donated a helmet to our kick off raffle back in April when Mr. Armstrong came to town. By complete chance one of the girl in the TLC Fit program, won her helmet. That girl’s name was Michaela… same name as Cait’s sister. Michaela, survived Hodgkin’s and she’s a tall beautiful girl. She doesn’t like to be the center of attention, she thinks she can hide in the back of the crowd unnoticed…. but we noticed her. Cait…. inspired by Michaela’s story had an idea of how she might be able to help.
Michaela didn’t have a bike. In this economy it just wasn’t on her family’s radar. She looked so beautiful in that helmet, but the helmet would probably need to be saved for another time, another day another chapter.
Cait was swimming one day and had an idea. If there is one thing I learned through all of this, and one thing we all should have learned through all of this, is that there is no harm in asking, in dreaming big and in reaching. So Cait…. did just that.
She asked her bike sponsor Quintana Roo, if they might be able to help her secure a bike for Michaela. The kind folks at QR knew all about Teens Living With Cancer and the kick off with Lance Armstrong….. and they were quick to let Cait know they’d be happy to help. And the idea was born and the plan was created. She and Mikalea came all the way from Boston and surprised Michaela with a Quintana Roo bike. Signed by Cait of course!
The presentation of the bike!
Michaela had NO IDEA. We told her mom just moments before, who erupted into tears. Not only did Quintana Roo send a bike for her, Pearl Izumi donated running shoes, jerseys, hats, t shirts and arm warmers. Rudy Project donated bags, visors, t shirts and sunglasses. Fuel Belt donated hydration projects. Blue Seventy donated swim gear. FOR ALL OF THE KIDS. Each teen got a Rudy Project bag FILLED with great things…..
Thank you Cait and all of the sponsors!
The Geneva Bicycle Center has also donated a bike fit for Michaela, and are going to teach her the ins and outs of how to handle such a great ride!
I can only imagine that Cait, as a professional triathlete who relies on sponsors for not only the best gear but for supporting her career… has to feel pretty damn good to be representing such quality companies. They all gave selflessly and without question. They know that giving these teens this stuff doesn’t make what they went through better. But it inspires them to continue their journey.
Thanks to all of Cait’s incredible sponsors. And of course to Cait and Mikalea for coming all the way out here.
Cait and Mikalea took in the stories, the center, they listened and talked with all of the teens. They watched them go through the assessments, wanted to know more, learn more and really understood what Teens Living With Cancer is all about. And how small we were. They got it. They really got what happens here. To be able to share this with them was such a gift. Their presence last night was such a gift to the teens. They listened as Cait told her story about how she got started, what inspires her, motivates her and what it means to run down Ali’i Drive every October.
You could tell that the inspiration was flowing both ways.
When you walk into the center you see a wall of pictures. Pictures of faces of the teens that have been in the programs that TLC has to offer. These pictures depict healthy, smiling happy teens. In the below picture you can see a bit of that wall. This is Katie, we call her Katie the researcher, who was in charge of the research piece of the study (she’s our unsung hero and due…. today in fact!)
Whenever people come in and look at that wall, I let them know that many of the pictures are of teens who are now dead. Who didn’t make it. In the picture, you see Charlie, he’s at the top, with curly brown hair. He died. He would have been 25 this past March. He didn’t make it.
That’s the stark reality of this whole thing. This b*tch we call cancer. In this age group especially due to more factors than we even want to admit, it steals these vibrant beautiful teens from our lives.
Getting the word out there is my mission. Our mission. Many of you have jumped onto this mission because you realize and understand that we can’t lose another Charlie. We can’t have late diagnosis, we can’t mis diagnose and treat for mono when cancer is the culprit. Through all of this … you all have realized that as well. Those of you who have come to our aid … we are indebted to.
Sharing is the way we did this. You allowed me to share these Teens with you and you in turn shared them with your world. People out there want to help, especially triathletes. We want to do something we just don’t always know how.
Lance Armstrong told us that we have to take care of each other and we have to pay it forward. I think through these past 6 months that has been shown, proven, demonstrated… that we can and that we do.
This chapter might be over, but this endeavor is far from over. This was the first fitness program for Teens Living With Cancer, in the country. The next grant is being written, the fitness program is being adapted, modified changed. And there is another kick off coming this October in Kona…..
Thank you. Thank you to all of you. Thank you to Cait, and Mikalea and to all of the sponsors who sent gifts last night. Thank you to all of you for stepping up, stepping forward and for making the last few months really special for these Teens. I will have that donor list this week and I can’t wait to write every thank you card myself.
Thank you Lauren and Leah. You are the ones who work this from the ground up.
Thank you Melissa. What you had to go through was too high of a price. But we know you are up there watching, smiling. We know you are with us, and we can only hope that we are helping your mother keep the promise.