A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Greetings From Arizona

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

This morning, just as the roosters began crowing, Mom and I hopped into our Jeep Patriot rental car (who we have already fondly named “Hugo”) and began driving eastward. The windows are decorated with my non-award-winning artwork– childhood cancer awareness and HOPE signs. The back is packed to the brim for our three week trip, and I am so excited about the adventures and the possibilities that lie ahead. 

Each day brings new responses from the children’s hospitals we have contacted; although they have never heard of someone doing this, they have been wonderfully receptive and kind. Tomorrow morning, before we leave Arizona, we will see the brand new children’s hospital here in Phoenix. I won’t be able to visit with any of the children here because they are moving to the new hospital. I want to thank Teri from Phoenix Children’s Hospital for trying her very best to make it happen! Their staff is delighted about the move, and I have discovered that even the hotel desk clerk speaks of the new hospital with pride. 

Adventure is fun. Adventure with a huge purpose is thrilling. 

I know there are many, many children across the U.S. who would love to be healthy enough for adventure. I am grateful– so grateful– to be healthy enough to travel to see the children. I pray with all of my heart that my visits will somehow help to give them hope and strength. I pray this Tour will bring more people to help the children, more money for research, and that it will bring what we truly need right now…

A Cure!

Nurse Cyndi Kissing my Dome

 

 

 

 

 

http://www.thefightlikeagirlclub.com/2011/06/one-who-should-not/

 

 

 

 

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

Good morning, friends. It’s nice to have my brothers home from college for the summer. Even though they’re busy with their work schedules, and one is also extremely busy with his play schedule, I love seeing their faces and grabbing them with a big hug as I pass them in the hall. Maybe I’m thinking this morning of this because, in a few days, Mom and I will be leaving home for three weeks. Neither of us has ever been gone from home for that long. We need to get in lots of hugs before our departure! This of course includes Larry!

Since I last posted our BullHorn Itinerary, our trip has altered—or fine-tuned as Mom says. As we communicate with people and hospitals, she is “refining” so our trip can be the best it can be. Is there someone you know in a hospital in one of these places we will be visiting? This Hope Tour wants to meet them. Do you live in one of these places? Would you like me to share with your group? I there any way I can help bring childhood cancer awareness to your community when I am there? Please let me know!

melinda@melindamarchiano.com

6/17 Phoenix, AZ

6/18 El Paso, TX

6/19 San Antonio, TX

6/20-6/21 Houston, TX

6/22 – 6/25 New Orleans, LA

6/26 Atlanta, GA

6/27 Chapel Hill, NC

6/28 – 6/29 Philadelphia, PA

6/30 – 7/2 Boston, MA

7/3 Niagra Falls, NY

7/4 Indianapolis, IN

7/5 Leawood, Kansas

7/6 Denver, CO

7/7 Salt Lake City, UT

7/8 Sacramento, CA

I have to tell you, it is so exciting to hear from you! Joanne, Khadi, Deliece, John & John (That is two Johns, not someone named John & John!) … thank you! Each one of these people is doing great things for children with cancer, and I am honored and blessed to have the chance to thank them in person. Something very wonderful happens when people with the same passion connect. Yes… it’s like 4th of July fireworks! Crackle, crackle, BOOM!

It’s time to get the signs ready for the car windows.

46/7   

Thank you, Michelle, for sharing your beautiful design and most of all for your commitment to fighting childhood cancer. Your design will be shining on our car from Sea to Shining Sea.

I’mBringin’BunchesOfSpiralNotebooks&Pens

Hmmm…. Wonderin’ what I will have to write about?

Hope 46/7

 

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

This is finals week.  My last final was today! Wow. Wow,wow,wow,wow!

So now, dance performances are over until August and school is out tomorrow.  Sigh…

Guess what I cannot wait to do?

Meet you!!!

I am leaving a week from tomorrow, and now that I have a moment to take in what is about to happen in my life, I feel like I need to go to the quiet place of my heart to seek Guidance.  How can I, little Melinda, leave this world a better place? How does this intersect with my great desire to help children with cancer? I pray that every step of our journey will help kids with cancer. I hope the  children I meet will share their lives with me in their own beautiful ways. I hope while I am gone, you might think about doing something like the following… making lemonade:)

 

 

One lovely way to help raise money for childhood cancer research this summer is to make some lemonade and have some fun.

Lemonade Stands near you

http://www.alexslemonade.org/search/alex_search

My friends at Pablove on Twitter asked me to vote for this boy… I love him!

http://kidswhogive.com/vote-on-entries/entry/?submissionId=57

Finally, one more linky-dinky today…  This is why we need research for less toxic treatments. The treatment is deadly for too many children… one is too many.

http://news.yahoo.com/s/hsn/20110525/hl_hsn/childhoodcancertherapiestiedtogastrointestinalissues

Okay… I found one more to share. I want to thank KSBY and Carina Corral.  You always show you care about ending childhood cancer, and I am grateful.  I am really grateful.

http://www.ksby.com/news/teenaged-cancer-survivor-and-published-author-adds-more-to-her-list-of-accomplishments/

Mom and I have tweaked the end of our trip a bit… I will update the schedule soon.  I really don’t own a BullHorn and I probably wouldn’t use it if I had it.  Well, hmmm… there is a situation for just about everything… and I am quite passionate!

I will love to meet you along the way!

I am going to go back now to that quiet place of my heart.

God whispers from the quiet place of my heart.

 

 

My BullHorn Itinerary

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

On this National Cancer Survivor’s Day, I find myself thinking more about those who didn’t survive.  I find myself stuffed with thankfulness for life and for love.  Please join me in spilling over a bit today…

I am very, very excited about a fast approaching “Mission.” 

I call it Children’s Hospital Hope Tour.

My mission (if you know me, please pardon the redundancy,) is to visit “the kids” fighting cancer. I want to know their names; I want to know their faces and I want to hear their hearts.  I want to hug them and share in their hope.  The mission is to love them.  The mission is to make sure that the children who lost their battle will not ever be forgotten.

Awareness. Yes, that is the next big piece of the Mission Pie. We need to keep telling everyone who will listen how childhood cancer research is seriously underfunded.  If people truly knew the facts about the lack of funding, there would be change.  If I have to get out my bullhorn and hang out of the car as we sit in traffic traveling through cities, well…. 

Here is a better idea– I will give you my itinerary.

If you see that I will be in your area, and have interest in having me “Get Out My Bullhorn” for you, please contact us at melinda@melindamarchiano.com

6/17 Phoenix, AZ

6/18 El Paso, TX

6/19 San Antonio, TX

6/20-6/23 Houston & Austin, TX

6/23-6/26 New Orleans, LA

6/26 Memphis, TN

6/27 Chapel Hill, NC

6/28-6/30 Philadelphia, PA

6/30-7/2 Boston, MA

7/3 Niagra Falls, NY

7/4 Indianapolis, IN

7/5 Leawood, KS

7/6 Denver, CO

7/7 Salt Lake City, UT

7/8 Sacramento, CA

I can’t wait to meet you!!!  Promise I won’t put my bullhorn directly into your ear:)

Big Hugs Anais!

 

Calling All Heroes

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

As each week flies by faster than the last—especially this time of the year—I need to place many things at the top of my priority To-Do-List.  School is important, dance is extremely important, and one priority that constantly remains critically important to me is raising awareness for childhood cancer.

Keeping my room clean is not so important…

I say this not to ease my guilt as I type these words, but to let you know that rubble can wait… children fighting cancer cannot.  I would love for everyone to see that we don’t have time to mosey around. Please join me today in taking action; please join me in ignoring the messiness of life for a moment to choose to do any or all of the following:

Please click on the link below and vote for the Isaiah Alonso Foundation.  This is seriously easy, my friends!

http://bit.ly/iGuo4m

PAC2, always one of my favorite sources of information, is asking us to contact our elected representatives to help bring increased funding for pediatric cancer research.

http://acurechildhoodcancer.ning.com/forum/topics/pac2-initiative-support

Specific Instructions from PAC2—including contact help links:

“Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.   

 Senator Reed’s office has asked that the community engage our grassroots in supporting this effort.   Specifically,getting advocates to ask their 2 senators to sign-onto the letter.

HOW YOU CAN HELP……..

  1. 1.     Please call your two senators in Washington and ask the receptionist for the email address for the senator’s health care legislative assistant.  Identify yourself as a constituent  when you call.
  2. 2.     If you do not know your senators phone numbers, they can be found here:http://www.senate.gov/general/contact_information/senators_cfm.cfm
  3. 3.     Once you have the legislative aides’ email addresses, please send separate emails to them that contain the attached correspondence (download here) from Senators Reed and Isakson.
  4. 4.     Include a brief note in the text of your emails, that;
  • makes clear you are constituent,
  • conveys why you are involved in the pediatric cancer community,
  • specifically asks the  senator to sign-onto the letter in support of funding for pediatric cancer programs.
  • you reference the attachment from Sen. Reed and Isakson which has all the details the aide will need
  • you close by asking to be kept apprised of the senator’s decision.   Include your home address in your message.
  1. 5.     Please note — This is a letter for senators to sign.  Please do not contact Senator Reed or Isakson’s office and ask that your signature be added to the letter. 
  2. 6.     The deadline for senators to contact Senators Reed and Isakson to sign-onto the letter is June 8th.  Offices will need some lead time to consider this request so please act today!

Thanks!”

Some very exciting news this week came from Alex’s Lemonade Stand with their announcement that Toys R Us has joined them in the fight against pediatric cancer.

http://www.toysrusinc.com/press-room/releases/general/2011/toysrus-inc.-joins-alexs-lemonade-stand-foundation-in-the-fight-against/

This gives me hope that more corporations will awaken to act in very large ways to help stop childhood cancer.  Congratulations to Alex’s Lemonade Stand for this major partnership that will without a doubt save children’s lives.

I think it’s a great thing that Toys R Us cares about children who may be too sick to even play with toys. I admit that I look at many corporations with skepticism about their motives and disgust for their greed. Show me wrong, corporate America, show me wrong! Would you like to line up behind Toys R Us and form a nice, long train that will chug up the childhood cancer hill to a cure?

Get your couplers ready for hook-up!

And what is the reason for all of this effort?

Because stories like the one below are common in the world of childhood cancer. It’s easy to get caught up in foundations and fundraisers, but all of this effort is about each individual child. It’s about the children who have suffered and died. It’s about the children in the midst of their battle. It’s about letting everyone know by our actions that their lives matter.

Let’s change that word “common” to “extinct.”

From a friend…

First and foremost…we have a friend who desperately needs our help.  Our buddy, Santos, is fighting a second relapse of his brain tumor.  They are wishing to do some experimental treatment, BUT insurance will not pay for this treatment.  Without $20,000 to begin, they cannot get him ANY treatment…we all know what that means.  He needs a hero, and my thinking it that all of combined can be heroes to this little boy–we can give him HOPE!  He is a sweetheart and he and Braden had a grand time one day when they came up to the hospital to visit.  Santos and his family are very faithful, softspoken, courageous, warm, loving, and wonderful people–I really can’t say enough good things.  I know there are many things that we all are asked to consider contributing to, but this one could give Santos more time on Earth with his family–I don’t think there’s a greater gift.  PLEASE consider helping and spreading the word to others so they can help–no donation is too small, every dollar counts and helps! Please help us find heroes for Santos—he is most certainly one of ours!  You can make financial donations to:

Industrial State Bank
Att: Santos Arreola Treatment Fund
Account # 130000794872
P.O Box 6007
Kansas City, KS 66106

Perhaps donating two bucks to Santos will be the greatest gift you ever gave yourself.

Calling all heroes…

NYC in a Nutshell

I have missed you… really, really missed you!

It seems like forever since I wrote. Maybe this has something to do with all that has happened since… whew!!!

As soon as Mom found out that my book was a Benjamin Franklin Award finalist, she began investigating and planning our travel to NYC. There are many people I want to thank for making our time an amazing and unforgettable time of my life!  I need to thank my Twin Friends, Mark, “Miracle Mary,” Tina, Polly, Hugh, and Vicki. These people made a huge effort to make my time in NYC incredible, and I am very, very grateful.

NYC-in-a-Nutshell

Arrived on Friday the 20th

 American Ballet Theater Don Quixote      Metropolitan Opera House 7:30

We thought we would arrive on time, but instead arrived fashionably late.  Who should we walk in at the same time with, but Sarah Jessica Parker? Yes, really. At Intermission, Mom and I met a lovely lady named Tina who used to dance with American Ballet Theater and has worked for them for 17 years. She graciously took us backstage where—I nearly fainted with this one—I stood on the stage, with my back to the closed curtain—at the Metropolitan Opera House in NYC while the finest dancers I have ever witnessed warmed up for the next act in front of my eyes. I had to keep reminding myself to breathe!

Thank you Mary and Tina!

Saturday the 21st

This day began with a great blessing. Have you ever met someone who you feel you have known all your life—even though you just met? Mom and I just “happened” to be in NYC at the exact same time as this someone. Hmmm… sounds like something The Great Conductor would arrange… like something only The Great Conductor could arrange!

Phantom of the Opera       Majestic Theater 2:00

Once again, “Miracle Mary” worked magic for me by contacting Polly. Can I just say right now that Phantom was the most amazing show—the most amazing talent—I have ever seen in my life???!  When Phantom was over, Mom and I met Polly, one of the performers, backstage and she gave us a backstage tour. Wow! To be able to go backstage and see all of the props, sets, and costumes was thrilling!  To top off the thrill, Polly introduced me to Hugh Panaro, the beyond spectacularly talented actor who played The Phantom. As talented as he was onstage, he was equally as gracious and kind when he greeted us backstage. As I was leaving, Polly gave me two very special gifts: a Phantom Poster and a pair of her pointe shoes—all signed by the cast.

Thank you Twin Friends, Mary, Polly, Hugh, and Vicki!

Sunday the 22nd

Nothing like a morning walk through Central Park! This was so much fun! It was beautiful, huge, full of surprises like gifted violin players and not-so-gifted trumpet players! It was all so entertaining and very enjoyable. We jammed in as much as we could before our next planned event:

Wicked   Gershwin Theater 3:00

I want to thank Vicki for helping us get great seats ahead of time… Mom and I thought of you when the friends sang the song about how their lives are better because they have known each other. We were SO happy to be able to see the show with Rachel, our friend who lives in NYC and is a huge advocate for children with cancer. Thanks Rachel for the great time and for the taxi lessons!

Monday the 23rd

How could we leave NYC without first seeing the Statue of Liberty??? We were up at the crack of dawn on our last day in NYC and on the Staten Island Ferry before the roosters were crowing. (Are there roosters in NYC?) We stood out on the bow of the ferry with the wind blowing in our faces and watched with wonder as Lady Liberty stood with her torch high above the harbor.

It is a site I have always wanted to see.

Another site we needed to visit before leaving was Ground Zero. I can only think of one word to describe the feeling inside me here… reverence.

As we ended our time there, I hailed the first taxi of my life… and it drove right on by us!!!!!!!

I did not give up, but attempted another wave. This time, the taxi stopped and it took us to Steps (a dance studio on Broadway) and I watched a class.

Our final NYC events:

Benjamin Franklin Awards Ceremony Bill Fisher Best First Book Nonfiction

This ceremony was at 5:00 at the Javits Center. We loved meeting and talking with publishers and authors; the food was good too! The category for my book was the second to last to be announced. To be one of the three finalists meant that I already felt I had won… but as the time grew closer to my category, I will admit that I could feel my hands go a bit clammy!

When IBPA announced Grace as the winner, I thought my heart would pound straight out of my chest!

As this award ceremony ended, we left and arrived at the next award ceremony just in time to receive a Silver Medal Ippy Award.

What a great, great time in NYC! Thank you, thank you to everyone who helped to make it the beautiful memory inside me that I will have always. I also want to thank everyone who has sent loving congratulations messages!

True success for my project will not come in the form of medals, trophies, or awards, but in more awareness for what children with cancer face… and ultimately, in finding cures. If medals and awards can help reach this goal, wouldn’t that be “Loverly”????????

 

NHS Dance Company

 

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

The month of May is Brain Cancer Awareness Month.  When I think of all the children I am aware of who have fought brain cancer over the past year, I wonder how anyone can be unaware that children get brain cancer too.  I guess it depends on what you are paying attention to.  I know of a little boy who lives near London who is fighting brain cancer, and he has made a list of things he would like to do before he says, “the angels come to take me to heaven.”

Although I live across the world from this boy, and many of my readers do as well, I am counting on the magic of the word-of-mouth/internet social media to help him receive his wishes.  Hold onto your heart as I you read the list below:

1.To go and visit some Tiger Cubs and have a cuddle;
2. A trip in a helicopter
3. Visit Jamie Olivers “15” Restaurant/Kitchens in Covent Gardens and go in the kitchen and see how it all happens!.
4. Visits a quirky unusual hotel with sports memorabilia or futuristic gadgets.
5. Visit a Westend Show:- Mamma Mia, Grease, Lion King.
6. To go in the control tower or behind the scenes at Gatwick Airport or any London based Airport.
7. For a Large touch screen TV remote (size of an Ipad) so he can turn the TV over…he cannot see the normal size TV remote!

Is there something you might be able to do? Web, please work your wonders!

Every time I hear about pediatric cancer foundations giving money to researchers, it gives me great hope that there will be a time in our future when cancer is dead. PabLove Foundation gave their very first pediatric cancer research grants today! Congratulations to them on this excellent accomplishment! I received this news in a tweet from them this morning, and they have asked me to spread this great news, so please pass it on!

http://pablove.org/news/first-ever-research-grants/

One other organization I want to tell you about today is…

“TeenPower4Life is a national movement of teens who devote their time, energy and abilities to bring about positive and extraordinary change in the lives of others. This fall, our walkathons nationwide will raise funds for the National Children’s Leukemia Foundation. Join us and walk for the cure wherever you live.”

If you would like to “Like” them on Facebook:

http://www.facebook.com/TeenPower4Life?sk=app_4949752878

Before I forget to tell you, I saw a photo of Lilly— taken after her shave for the brave event that I told you about. For some reason, I was expecting to see a shiny dome atop her head, just like the one I sported during my chemo treatments. But all I could see were her sparkling eyes and warm, loving heart.

Funny how it is when people live straight from their hearts… when you look at them, you don’t see a People Shell at all; you see pure love.

That’s what I see when I look at Lilly… pure love.

Here I am discovering my true inner baldness!

Loving Lilly

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

I have been thinking of Lilly all day long.  Today is the day she shaves her head for the brave, unselfish, honorable reason of raising money for St. Baldrick’s Foundation and for childhood cancer research.  Lilly is not yet a teenager, yet she has boldly stepped forward to carry on her brother’s mission of raising money to stop childhood cancer… even if it is two bucks at a time. 

I ask you today to show your love for Lilly. I ask you to do it now.  (I can see you shaking in your boots like I am looking at you, and you are right, I am!) There is a great saying in “The King & I,” where the King of Siam says, “Now is always best time.”  I have found this to be very valuable in my life; I am asking that you try practicing it right now by clicking the link below:

http://www.stbaldricks.org/participants/mypage/participantid/445497

Right now is the best time to act… and I would love for you to let me know about it by commenting!  Now that you have clicked the link, you are halfway there! (Don’t start sweating and panicking!)  You have the opportunity now to decide how much you would like to donate. I will not accept any excuses. “I can’t afford it” will not work with me.  I will just ask you to give up that Starbuck’s, or eat beans for a night, or even use less toilet paper (hee hee!) If Lilly can show love for her brother, Max, and other children fighting cancer with this exceptional act of love and kindness, the least we can do is dig deep… very, very deep within ourselves to locate something– anything– to give.  As Max would tell people, “Two bucks, I mean it!”  If you have “Two Bucks” to give… you have something wonderful to give!

May I please cover possible excuse #2?  “I don’t have time” won’t work with me either.  Get up five minutes earlier or go to bed five minutes later.  Give up five minutes of that silly television show that is garbling your brain cells and recognize we have a hero among us! 

Just like her brother Max, Lilly is a true hero.

It is a joy, and a truly humbling experience, to support Lilly.

I just did!

Incredible Super-Sib Lilly


Miracle Happy Dance!

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

The very first news I have to share is great, great news!

My buddy Braden Hofen received test results today… NED!!!!!  No evidence of disease!!!!!

Go ahead and do a happy dance, sing off-key at the top of your lungs, and if you live in a big city, stick your head out of the window and take a deep breath.  Ready? (This is for Braden, now…)

Yell, “Take THAT cancer!” 

This is 6 year-old Braden’s attitude, and I admit I love joining him in this sentiment.  You GO Braden, you Go!  For everyone who has been praying for him, thank you, thank you!

While we are on the subject of dances, I want to tell you about a 25 year-old woman named Jolene who has been fighting cancer since she was 17. On the tip-top of her “Bucket List” is to meet Ellen and dance with her on the show.  Well, some wonderful friends/angels came through with VIP tickets to the show on May 25th!  Now, her friends and supporters are posting a video on the Ellen Show Facebook wall showing her how much Jolene would love to dance with Ellen! They are asking people to please post and share this video:

https://www.facebook.com/video/video.php?v=2040929743405&comments

I hope you get to dance with Ellen, Jolene!

I don’t enjoy going from joy-filled news to disturbing, but I feel the need to pass this on.  I heard this story today about a woman who may have her children taken from her because she has cancer.

http://www.change.org/petitions/do-not-allow-nc-judge-to-take-alaina-giordanos-children-just-because-she-has-cancer

Finally, LIVESTRONG Community Impact Project voting has begun. When you click the link, you will be able to select a region and then vote for your favorite. http://vote.livestrong.org/

Just wondering. Do you still have colored hands for Brodie?

Sometimes miracles take a lot of prayer and a lot of work, but my goodness…

Braden…  NED…  Braden!

Miracles Do Happen!