A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for March, 2011

Beware: Minefield Ahead

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

Something happened today that tickled my soul and made my jaw drop to the floor. This happening arrived in the form of an email…

 

I love hearing from people. I am a People Person. Well, today I received an email out of the clear blue Universe from someone very special who shall remain anonymous at this time.

This special person told me that she does not even know what she was Googling, but she came across my book. This person was diagnosed ten years ago, at the age of twelve, with Hodgkin lymphoma. She has suffered ever since with a depression and a terrible eating disorder. She has danced since the age of three.

Does any of this sound like someone you know??????????????????????

One of the things she told me that (thankfully!) is not familiar, is that what troubled her most during treatment was that her doctor would not let her dance during chemotherapy treatment.

This would have killed me…. not the chemo, but the Huge “NO DANCING” Roadblock sign!

Thanks Dr. Dan for seeing this in me– and for not constructing Roadblocks to restrict this body of mine that needed to dance—even though my best dancing at that time looked like “a hippo giving birth.”

What Special Person has shared with me has made my thoughts spin around. I sure would love to see children who have finished cancer treatments monitored more closely for all of the possible late effects. I would love to have more awareness of the potentially deadly and devastating “Minefield” that awaits survivors. I understand why the giant focus is on treatment, but also important is what price are patients paying for their survival?

Special Person has been battling and suffering for ten years.

What a price.


Today, I ask for your prayers for the incredibly joyful Lyssie Righter…

Lyssie Righter Teaching us Joy

 

 

Thank you Carina Corral and KSBY 6 for your continued support for raising awareness for childhood cancer!

http://www.ksby.com/news/nipomo-teen-s-memoir-on-cancer-journey-up-for-award/

Thank you also to the Adobe Press and Santa Maria Times:

http://www.santamariatimes.com/news/local/546e4996-5904-11e0-b607-001cc4c03286.html

 

 

 

 

 

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Creating Hope

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

There are times I wish I could transport my People Shell through time and space so that I would be able to attend an important event… or be able to wrap my arms around someone I love.

I really could have used a People Shell Transport to bring me to Washington D.C. to attend CureSearch’s Advocacy Days and to witness the introduction of Kids v Cancer’s Creating Hope Act in the Senate by Bob Casey. (D – PA) This legislation means HOPE for many who suffer from “rare” diseases. Childhood cancer is classified as a “rare” disease— although 46 children in the United States are diagnosed with cancer each school day and 7 children die from cancer each day. Childhood cancer does not fall under the “rare” category in my personal encyclopedia. I look forward to the formal report from PAC2; Bob Piniewski (PAC2, dad to AJ,) Joe McDonough (B+ foundation, dad to Andrew,) Andy Mikulak (Max’s Ring of Fire, dad to Max,) thank you for your tireless commitment to helping children with cancer. Thank you Senator Bob Casey for your compassionate work– and thank you to all of the childhood cancer advocates who participated. (I will begin searching now for a Transport for next year!)

“Of the nearly one in 10 Americans with rare diseases, approximately two-thirds are children,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD).  “Many of these rare pediatric diseases are very serious and treatments are desperately needed.  By expanding priority review vouchers to include pediatric rare diseases, this legislation would encourage the development of treatments for children with serious rare diseases.”

Now, two reasons why we need to act—now.

(Do we really need “reasons”… these are our dearly loved children fighting for their lives against a horrible disease!)

One of my dear Frovies (Friends I Love, and the “ie” is a hug at the end) on Twitter, Hara, asked me if I would please pray for Nick, passing along his Caringbridge site.

http://www.caringbridge.org/visit/francafamily/journal

My FB buddy, Steve, passed on this:

http://abclocal.go.com/wpvi/story?section=news%2Flocal&id=8031009

Yes, we need HOPE for children. Thank you to everyone working toward this goal. With cooperation, commitment, dedication and hard work, we will collectively reach the goal of curing childhood cancer.

Hero Taylor

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Souls in Tiny People Shells

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

Sometimes I wonder why we need to walk around in these stinkin’ People Shells. Please forgive me God— I am very, very grateful for my body. I call them “stinkin” because they get messed up, they mess you up, and they give out.

When I hear of another cancer child losing the battle… like Savannah Swandal…

I wonder why.

Savannah will be forever 11, but her smile will be forever mixed with all the love I store in my heart. I never had the pleasure of meeting her here on this Earth, but I look forward to meeting her where she dances now. She must be dancing, with Breanna, and Max, and Alexa, and so many others.

Imagine children in their heavenly bodies dancing and giggling, while God watches them with a love we will never come close to witnessing on this globe. There is a joy and a peace and a happiness that fills their spirits beyond what is beyond what is beyond…

This joy awaits us. Every one of us.

We must be called to love one another.

Being stuffed into this People Shell gets tough… watching our loved ones suffer in their People Shell is torture.

While I am here in this Shell, I pledge to do all I can to make cancer disappear from People Shells—beginning with Tiny People Shells.

I love you, Souls in Tiny People Shells:)

Praying for Savannah’s family. Grateful for the love Savannah shared with all of us.

Savannah Swandal

 

Crunch, Ouch, No!

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

One thing I learned this past week is to never underestimate the navigating skills of an Onc-Parent in the mighty “rapids” of the World of Medical Needs. I want all of you Onc-Parents (I use this term with utmost respect and love) to know that the skills you are learning now will help you and your family in the future…

My illustrative story:

This past Monday night, I was dancing at the Academy of Dance. Near the end of class, I landed from a leap on the side of my right foot… and heard a “Crunch.” I finished the dance as best as I could. The next day, I told my mom that I thought my foot was feeling a bit better, and I limped around school for two days before we decided it would be good to get it X-rayed—just in case.

Mom did her best to try to get me in to see my pediatrician, but they didn’t have any appointments available. She decided to take me to an urgent care facility so that we wouldn’t have to wait—you will love this story! As we entered and approached the receptionist, we noticed we were the only people in the place. Without looking up, the receptionist asked a few questions and shoved a clipboard in front of Mom.

When she left the window for a moment, Mom looked at me and asked, “Do you ever feel like a number?!”

The chill in the air intensified as the X-ray technician came into the waiting room and brought me back to the examination room while Mom was finishing up paperwork. He was obviously quite irritated by my presence. After he let me know that I ruined his evening (because we arrived fifteen minutes before closing,) he proceeded to diagnose me before the X-ray.

“If you’ve been walking around on your foot all week, there’s nothing wrong with it. You don’t need an X-ray.”

Then… more verbal abuse for “ruining his evening.”

Mom and I looked at each other in disbelief. We both agreed that this facility needs a disclaimer on their door:

“If you arrive after 5:45, we will accept you as a patient, but please be advised this gives us full rights to be rude.”

It would have been easier to take if they would post this disclaimer… at least you would be aware of what to expect!  Mom believes this: If they are open for business, they need to treat people with kindness and respect– or they need to be closed.

The doctor took one look at my foot and sent me back to Mr. Rude to have it X-rayed. Oh joyJ More lessons in patience for Melinda… suddenly Mr. Rude changed his tune. While he was preparing my cast, he continued his verbal onslaught—only now he began telling me that I should have come in much sooner, because now I “ruined my foot by walking on it.” Mom and I exchanged wide-eyed glances while he released his frustration with his words.

“You’re not going to be able to dance for a really, really long time.”

Mom could not remain silent any longer, blurting, “It’s a good thing you were across the room from Melinda when you said that—she just might slug you one.” Then she smiled at him.

His reply was abrupt, “I hit back.”

Yesterday—Round Two:

Here is where I get to the part about “Navigating the Rapids for Medical Needs.” The urgent care doctor and Mr. Rude both told my mom that I would not be able to get in to see an orthopedic surgeon until late next week. By this time, my fractured foot might begin healing the wrong way… and I need to see if surgery is necessary. Mom knows how important dance is to me—which means my feet are very important.

Do you think Mom would accept this information without doing everything she could to get me help as soon as possible?

No, no, no… not an “Onc-Parent!”

She spent yesterday morning calling everyone she could think of, and after many calls, and help from caring angels, she got what she wanted. One of these angels is Vanessa from Digital Imaging who arranged for a special courier to return my X-rays to the urgent care. Another angel is Karen from Dr. Jonathon Fow’s office. Even though Dr. Fow is booked solid through next week, she called him and arranged for us to bring my X-rays to him at his Morro Bay office so he could take a look.

Wow! Dr. Fow took time in between his surgeries to look at my X-rays and personally call a physician to help me. He handed the phone to my mom and they set up an appointment for me on Monday morning. His fee… nothing.

My love goes out, once again, to all of the Onc-Parents who navigate the Rapids. Keep pushing for what you need for your child and don’t take “No” for an answer.

May God bless Vanessa, Karen, Dr. Fow, and all of the Angels who choose daily to “Do Life” from your hearts.

Baily Bennett with the joy of an Angel

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Clickity Clack– The Roller Coaster

Grace: A Child's Intimate Journey Through Cancer And Recovery

“Yes, cancer is a roller coaster, and it seems that when you’re not at the highest or the lowest point, you’re in rapid transit either up or down.

 

I’m still waiting for my life to “even out,” but frankly, I’m not sure it ever will.”

Copyright: Grace

My life “Roller Coaster” is still in full swing… and I find myself hanging on. The Swing for a Cure event this past weekend in San Francisco was terrific. The UCSF Academy of Art was dressed in gold jerseys with gold ribbons on the back, and they raised money for University of San Francisco Children’s Hospital. The field was located in a beautiful, green valley, and the day was much warmer than the usual chilly, blustery San Francisco days.

Before the game began, I shared the honor of throwing out the first pitch with Sy—the 8 year-old boy I told you about. I was thankful he was able to come as he had finished his first round of chemo just a couple of days before. I understand Sy has a very tough battle ahead of him, so I will continue to ask for your prayer support. His Aunt Rachel, the awesome softball coach, has formed the group Sy’s Storm Troopers to walk in the San Francisco CureSearch Walk on May 14th. If you live in the Bay Area… please consider joining with Sy to raise money for pediatric cancer research.

Just in case you are wondering if I threw out the ball with complete “softball form,” I will stop that wondering right now. Since I grew up with two brothers who played baseball—in a family who loves baseball—I wound up and announced I would be throwing it “baseball style.”

It was a strike =)

When the double-header ended, Mom and I aimed toward Sacramento where we spent the night with my brother, Nicholas. Can I please interrupt my childhood cancer awareness- raising to shout out loud how much I love my brother Nicholas and my brother, Dean???????????? Whew!!!!!!!!!! I really do love them—so much!

And yesterday—yesterday– I still am not quite processing this…

http://www.bookoftheyearawards.com/finalists/2010/category/young-adult-nonfiction/

http://www.bookoftheyearawards.com/books/9780984271207/

Like I tried to explain at the beginning of this post, cancer is a Roller Coaster!

Without love, we would end up crumpled.

But with it, there is hope that the rattling car struggling uphill for miles with no end in sight will reach the summit.

Yikes! Then we need to hang on for the wild ride ahead!

Loving Anais Medina:)

 

 

 

Layla Love-Magnet

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

When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.”

~ Isaiah 43:2

One year ago, a precious two year-old girl named Layla Grace earned her angel wings. Now, the Layla Grace Foundation works for discoveries of new treatments for children with high-risk cancer. Their goal is to “empower” parents with tools to become advocates for their children. At the same time, they work to raise public awareness about their cause.

There is a part of me that loves the way people say children with cancer “earn their angel wings” when they pass. I love the word “earn,” because that is exactly what they have done—they have earned the wings of angels. The part of me that can’t stand it is the part of me that knows how hard they have fought to earn those wings.

Dear Baby Layla has touched the lives of people all over the world. Even now, as she flies free with her angel wings, she continues to inspire people with her courage. Layla is a like a love-magnet, with a magnetic love force that draws people to her… even now.

I marvel how a two year-old girl can truly make a difference in the lives of others.

I am blowing you a great big kiss Layla…. MMMMMM—WA!

To everyone at Layla Grace Foundation, I send my sincere thanks for turning your love for Layla into help and hope for children with cancer.

http://www.facebook.com/laylagracefoundation?sk=info

Layla continues her legacy

Croak Cancer, Croak!

Grace: A Child's Intimate Journey Through Cancer And Recovery

Swirling feelings from many directions have me spinning a bit today. I am very, very excited about being one of 251 people throughout the world who have been chosen to be 2011 LIVESTRONG leaders. At 7:00 am, I listened to my very first LIVESTRONG conference call. May I please admit that one of my favorite things about the experience was hearing different accents from all over the world? This is something I love about LIVESTRONG—they see cancer as a “global threat” that needs immediate attention. Truly, the entire world needs to notice, needs to learn, and needs to act now to fight cancer.  I am grateful for this opportunity to help LIVESTRONG make survivors stronger each day… and most of all, for the opportunity to help make cancer so weak that it croaks.

Yes… I wish cancer would croak.

As this day has progressed, I received news… bad news. I have an event scheduled for this coming weekend for the University of Art in San Francisco; they are raising money for the University of San Francisco’s Children’s Hospital. For a couple of months now, I have been communicating with a lady named Rachel who is planning this event. I haven’t heard anything from her for the past two weeks—until today. She has been spending countless hours at USF Children’s Hospital because her nephew, Sy, was diagnosed with a rare form of cancer two weeks ago. She has been planning this event out of the kindness of her heart to help fight pediatric cancer, and now, she is personally affected by the horror of  her loved one being struck by this terrible beast. Please pray for Sy.

To top off the swirling, I received mail today. I received Breanna’s program from her memorial service. Her mom, Helen, was very kind to send it to me.  I cried looking at her photos. I cried looking at her smile. I cried imagining what her family is feeling. I cried to know that she fought so hard, suffered so much, and now she isn’t here.

Yes… I wish cancer would croak.

Croak Cancer, Croak!

My buddy, Braden Hofen is telling cancer to croak too. In his own words, “Take THAT cancer!”

Go Braden! Go Sy!

Braden says, "Take THAT cancer!"

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