A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Oakland Children’s Hospital’

Ben Franklin’s Doo and Cindy Lou Who

 

 

 

I remember talking with my mom about the impending  loss of my hair when I was beginning cancer treatments. We both wondered how it would happen. I mean, would it all fall out at once? Would I wake up one morning with a huge “nest” on my pillow? Would it fall out in clumps here and there? As we imagined different circumstances, we would end up laughing until our bellies hurt. Never did we imagine what actually happened… and never, ever did we imagine it would be so funny that we would laugh about it for years to come!

From Grace: A Child’s Intimate Journey Through Cancer and Recovery: 

Dad nearly collapsed , and his eyeballs bugged out from his head. I guess that was the first time he ever really noticed the progression, or shall I say regression, of my hair loss. What occurred was quite fascinating. I had expected for hair to fall out everywhere, leaving patches of hair and no hair until all was gone. But instead, my one-eighth-inch part grew wider and wider until a stripe of a little over an inch created almost a “freeway” on my head. Hmm . . . Route Baldo . . . kinda has a ring to it. Anyway, each attempt to brush my hair resulted in more lanes being added, my own personal “tax dollars” at work. I needed some cones to set out.

A bit further on in Grace:

The mirror was a visual aid in grasping the reality that I had just about as much hair as a naked mole rat. My male-pattern baldness was most prominent where my part once stood. From there on out, the forest became slightly thicker. The near crop circle on my head was disturbing, yet hilarious. The phases went from top to bottom, and looking into the future, I saw myself with almost a “curtain” of hair along the side of my head, but nothing on top. I laughed so hard that it hurt. 

“Mom,” I shouted, still in a slur of giggles, “I’m gonna look like Ben Franklin!”

We laughed until our bellies hurt, our eyes were watering, and we were nearly
peeing in our pants. And then . . . we laughed some more.

As my crop circle continued widening to the extent of covering my entire head, I would gather the few strands into a tiny pony-tail on top of my head. My mom called me Cindy Lou Who… “who was not more than two!”IMGP2601 006

After this photo was taken, I returned home to the razor…

From Grace:

With Mom on one side and Nicholas on the other, we crawled down the hallway, as if preparing for launch. My hand grasped the metal hair buzzer on our bathroom counter. I was ready. With a “click,” I fired it up . . . all eyes watched my steady hand. As though using my own personal, mini-lawn mower, I executed a perfectly straight line from the center of my forehead to the crown of my head. 

I paused. It was an epic moment, and I knew it . . . everyone did. The now free hair floated elegantly down to the waiting floor as I began to form a parallel row. Feeling the cool air on my bare head, I giggled. It was something virtually no one experiences, let alone a thirteen-year-old girl.

I followed the contour of my head. I had never really known what shape it was. The tiny, delicate hairs slid down the back of my shirt, making me itchy. Carefully, I formed a giant circle on the top of my head, trying hard to make it as even as possible. The circle grew larger, just as a crop circle mysteriously forms in cornfields at 3:00 a.m.

Suddenly, I stopped and stared at the stranger reflected back at me. I had purposely ceased midway to, truly, be the one I resembled. I was Ben Franklin. With only straggly hair running around the majority of my head’s circumference, I depicted the founding father perfectly! Laughter erupted, and I found a chuckle that squeezed shock, excitement, embarrassment, and joy right out of me.

IMGP2607 032

 I am thinking I should Bring Ben Back– even for a few moments on my shave day– this Saturday, March 30, at Oakland Children’s Hospital for St. Baldrick’s Foundation.

http://www.stbaldricks.org/participants/mypage/579474/2

Kids need fun. Adults need fun. 

Cancer is no fun.

Let’s stop cancer together. 



 

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Oakland Children’s Hospital to Randall Children’s Hospital to the Space Needle on the Hope Tour

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

 

 

On Wednesday, June 20th, I visited Oakland Children’s Hospital. Their social worker and child life specialist, Wendy and Suzanne, kindly met Mom and I in the lobby and gave us a tour of the hospital. What will always stand out about my time at Oakland Children’s is the time I spent with Tate and Carina… two very brave and strong children who have just begun treatment. The term “meaningful” falls far short of what it means to me to be able to give back to these children what a survivor named Rachel did for me when I was at the beginning of my treatment. To see Rachel healthy, happy, and radiant, made me realize what my goal was. It made me realize my goal to get well was possible. It made me HOPE that I would one day be able to pass on the HOPE she gave to me. At that terrible time in my life, I needed HOPE.

Wendy and Suzanne at Oakland Children’s Hospital

Day Four Hope Tour Video

http://www.youtube.com/watch?v=nLfCPt6YdJ0

Mom and I hopped into Herbert the HopeMobile when we finished at Oakland Children’s Hospital and pointed him north, in the direction of Oregon. I have never been to Oregon before, so I was excited to see what it was like. We had a long drive through very hot California farmlands before we finally began seeing trees and snow-capped mountains. As we neared the no-man’s-land in the sweltering farmlands, Mom thought it would be best if we made a “Potty-Stop” before there were no more potties to be found. As a rule, we usually avoid the dreaded gas station potties, but when they are the only choice… you have to go for it! The man behind the counter gave me a bit of the willies, but I gathered my courage and asked him for the key. We discovered the bathroom outside, and turned the key with the long pipe attached before entering. Unfortunately, as hard as I tried to pull the key from the doorknob, it would not budge. Can you picture me with one foot on the door, one on the ground, and both hands pulling on the key as hard as I could? We ended up walking back in to Mr. Willie, apologizing for getting the key stuck in the door… and we were off once again.

Happy to be in Oregon!

What a welcome sight Mt. Shasta was, and what a welcome sight Medford, Oregon was, after a long day. In Medford, we had quite the challenge navigating. There were lots of loopy roads! The air was filled with fluffies—I believe they were from trees. The parking lot of the Rogue Regency Inn (who very generously provided our complimentary hotel room) was filled with a huge variety of cars from a car show.

The next morning, we were up and on the road again, on our way to Portland. It was a beautiful drive. One thing I learned about Oregon that I never knew before is that it is against the law to pump your own gas. Thank you to Make-A-Wish for alerting us to this; there is a $10,000 fine if we pump it ourselves! My cousin, Kylie, lives in Portland. She picked us up after we arrived at our hotel and gave us a tour of the city. Thanks Kylie for all of the laughs and all the fun we had together!

In Portland with my cousin Kylie

We rose early on Thursday morning to meet Kemp from Make-A-Wish and Maegan, Public Relations Specialist from Randall Children’s Hospital in Portland. Randall Children’s Hospital is a brand new hospital that just opened, and I was amazed by all they have done to make the hospital a great place for kids. There were school rooms, little sleigh-like wagons, places for families to gather, and even a work-out room. In my tour of the hospital, I was delighted to meet several pediatric nurses who had recently shaved their heads to raise money for St. Baldrick’s and childhood cancer research. Once again, visiting with the children was the very best part of the day. Maegan arranged interviews with two TV stations and a radio station. I am grateful to the media in Portland for bringing attention the outstanding work at Randall Children’s Hospital and for helping to raise awareness about childhood cancer.

Thank you to Kemp from Make-A-Wish Portland

Randall Children’s Hospital in Portland

http://www.kptv.com/video?autoStart=true&topVideoCatNo=default&clipId=7435535

On June 23, we hit the road again. Herbert the HopeMobile drove through the rain northward to Bellevue, Washington where we checked into our hotel. It was one of those “comfy car” days, where Mom and I decided we needed to wear sweats that were as close to jammies as we could possibly get! Sheraton Bellevue provided our complimentary two night stay.

Thank you to Make-A-Wish and to the Space Needle for a delicious meal with Joey, Jane, Madisen, Chelsea, Mom, and missing Caitlyn and Kim.

The incredible Make-A-Wish of Alaska/Washington has been working very, very hard on my wish. On our first full day in Washington, we dined atop the Space Needle with my cousins, Jane, Chelsea, and Caitlyn, and with long-time friends, Joey, Madisen, and Kim. The Space Needle went all out—not only providing an incredibly delicious meal, but also surprising me with a huge bag of Space Needle souvenirs! I loved our time together, and I am SO grateful to the Space Needle staff for their generosity! After our meal, we went out to the observation deck. We were very, very fortunate to have good weather, with a view that will stay in my mind’s-eye and in my heart for the rest of my days. The fun was not over. Once we descended, there was great entertainment—it was the day of the Pride Parade in Seattle that began and ended at the Space Needle.

View from atop the Space Needle

Before I close for today, I want to thank Kemp and Maegan from Portland, for believing in my wish and for all of their kind and thoughtful support.

I found Ballerinas at the Pride Parade!

 

 

 

 

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