A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Inspired Beyond Inspired about my Future in Medicine

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

What an incredible day it was today in Houston. We began our day at Texas Children’s Hospital, and I want to thank Jameee for her kind hospitality in showing us all they have for the children. Where I was treated, at Cottage Hospital in Santa Barbara, the children’s section is a small portion of the main hospital. Can you imagine how my eyeballs bugged right out of my skull when I saw that there is an entire Hem/Onc floor at Texas Children’s?! It is a wonderful place, with everything possible to help children get well and to help families help their children. Ronald McDonald House has a section that provides a kitchen and food for families so they don’t have to leave the hospital. There is a “stage” for performances and there were children everywhere, doing activities and what kids do best– being kids. The blood lab was on the same floor, meaning that results from blood tests arrive very quickly.  They have an “Infusion Suite” and more great services than I can even begin to tell you. 

After our time at Texas Children’s Hospital, I was honored and blessed to meet someone who I admire tremendously for her dedication to fighting pediatric cancer. I began communicating with her about a year ago, and today, I had the chance to sit and talk with her. Someone came to the front desk and escorted Mom and I back to her office through a maze of rooms that gave me, the Chemistry-Nut, chills. It was so cool! This woman’s name is Dr. Eugenie Kleinerman. I admire her, I respect her, and I want to follow in her footsteps. She graciously gave her time to share with me. Honestly, after I left, I was so inspired about my future in medicine I felt I could cry a bucket of tears. As I write this now, the tears are billowing. I will always remember what she gave me today. Dr. Kleinerman gave me a gift from her heart, and I will store and protect her gift in a very special place in my heart. 

Tomorrow, backtracking to Austin to Livestrong Headquarters and Dell Children’s…

Christus Santa Rosa Children's Colorful Emergency Room

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San Antonio Loves Their Children

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

When Mom and I started out on our Hope Tour, we were excited about all of the unknowns we would be surprised with as we travel. First thing this morning, we walked from our San Antonio hotel to Christus Santa Rosa Children’s Hospital. On our way, we were delighted with a great surprise. Walking in front of us was a man with earphones that had to be playing, “Tell The World That Jesus Lives,” because he was singing it at the top of his lungs so everyone could hear. He was punching his arm in the air and loving life.

Yes. This man blessed our day with his faith; he sang with his whole heart, and it made no difference that it was off key!

The blessings continued as we met the Child Life Specialist, Jennifer, and saw the wonderful hospital. They have an amazing library with a lot of books for the kids and they even have computers in the library so families can stay in touch with loved ones by email. Another favorite part of the hospital was “The Cow.”  All of their Hem/Onc patients placed their handprints on The Cow. I don’t think the impact of that will ever go away. Even their emergency room was decorated with bright, lively colors and decorations that would make any sick child feel better in some way. I am so happy to have had the opportunity to see what San Antonio has done for their children. They must love them a lot! And Jennifer, I am very, very happy to meet you!

Jennifer and the Hem/Onc Cow with Precious Handprints

Before we took off for Houston, we walked to The Alamo. (Told you I didn’t think we could leave San Antonio without going!) Some people say that it’s just some old buildings, but there is so much more if you stop to feel and not just look. What I will remember is the room where the women and children survived as The Alamo fell. I looked into that room, and it wasn’t just an old room in an old building. Real people who lived and loved and died left a big impression on me today.

I made a couple of friends at the Alamo

 

To top off our day today, we met a very special man and his wife. Many of you know this lovable man from the videos he so carefully, kindly, and compassionately puts together for children fighting cancer. We met John Gavin and his wife, Linda! I will share with you that John is even more lovable in person, and Linda is just the same. What a beautiful gift John has given to many of us; I am grateful for his heart for children.

Mr. John Gavin and his wife Linda with hearts bigger than the size of Texas!

Tomorrow morning, we are off to Texas Children’s Hospital and MD Anderson…

 

 

HugoHopeMobile will be buzzing around Houston tomorrow!

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Happy Father’s Day from San Antonio, Texas

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

Greetings from San Antonio!

Happy Father’s Day to each father! I need to send deep love today to fathers who have lost their children; I am so sorry for how difficult and painful this day must be. I realize there are no words of comfort; I want you to know how much I truly care and how hard I will fight to stop childhood cancer.

I was so happy last night to be able to see my Aunt Phyllis! My Aunt Phyllis and I were what I called “chemo buddies,” because we went through cancer treatments at the same time. She is very special to me! Lou and Aunt Phyllis traveled from their home in Las Cruces to our hotel in El Paso so we could have some wonderful time together. Thank you, Aunt P and Lou!

 

Today, Mom and I traveled  from El Paso to San Antonio—road warriors that we are— even driving between a raging fire on both sides of I-10. The westbound side of the freeway was completely shut down, but the eastbound side (that would be us in Hugo HopeMobile) was bumper to bumper traffic for miles as we crawled through the smokey chaos.

Thankfully, we are in San Antonio tonight. I can see the beautifully lit rotunda and American flag flying outside of our hotel window. We walked down by The RiverWalk tonight. It’s very pretty! One thing I find hysterical are the boats that travel down the river—just like the Jungle Cruise at Disneyland!

Tomorrow morning, we will go to Christus Santa Rosa Children’s Hospital before we head for Houston. Something tells me we cannot leave San Antonio before visiting The Alamo…

Cowboy Boots 46/7 Stop Childhood Cancer

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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

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Fight Like A Girl Post This Month is Poetry

 

 

 

 

 

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

 

 

 

 

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Coming to a Town Near You… I HOPE!

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

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The Quiet Place of My Heart

 

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.

 

 

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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!

 

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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…

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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

 

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