A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Melinda Marchiano’

Bye Bye New Orleans, Hello Atlanta

Without internet connection for two days, I feel there is so much I have missed sharing!

Very first, I want to thank Tiffany at New Orleans Children’s Hospital for helping me to be able to meet individually with children fighting cancer and their parents. This is the very first time I had the opportunity to go to each room to meet the children. I will be entirely honest with you when I tell you that my intention– each time I entered a new room– was to share hope with everyone I met in the room. By the time I walked out of each room, it was me who was inspired by the children. Each child, from little bitty ones, to teenagers, gave me something in my heart that I cannot even describe with words, as hard as I search for them. I met a one-year-old boy who had spent eight weeks in intensive care, with kidney failure and liver failure. Yet, there he was, sitting up by himself in the window seat of his room, like a real-life miracle. He was a bit timid at first, but when I showed him a photo of me with no hair and a therapy dog, he relaxed and smiled. The teenagers I met were very different than the little ones. They have a much greater understanding of what they are facing, and I could sense their fear. When I pointed to their beds and told them I was right there where they are three years ago, I could see their expressions change.

I could see HOPE.

And this is why Mom and I are traveling on this mission. We want HOPE for all of the children fighting cancer. We want less toxic treatments that will allow more children to live and to live a healthy full life after their battle. More people need to come forward to help, just like Benji Palus. I had the amazing opportunity to meet Benji at New Orleans Children’s Hospital when I was finished meeting with the children. Knowing how Benji volunteers hours and hours of his time to help children at the hospital, I imagined he must be quite a special person. When I actually got to meet him, his warmth, joy, and love far exceeded my expectations. Is there anyone who would like to hop on board the stop childhood cancer battle and become Benji-like? These hospitals need volunteers like Benji; the children need them and the parents need them. Sorry about the photo posts– click to see the whole photo!

With Benji and Tiffany at New Orleans Children's Hospital

On Friday night and Saturday, Mom and I attended the American Library Association Conference. To our great surprise, we met someone who helped us through my cancer treatments. When I was first diagnosed, my social worker, Robyn, gave us books and information. One of the books was written by a mom whose child survived cancer, and her name is Nancy Keene. I can see many of you who have lived in the world of childhood cancer nodding your heads like you know exactly who she is. Well, she and her lovely daughter, Allison, had a booth at the conference and Mom and I nearly screamed with delight when we saw she was there! We spent a long time talking together, and meeting her was the absolute highlight of the whole conference!

Today, we arose quite early and pointed HugoHopeMobile toward Atlanta. We traveled from Louisiana, through Mississippi, through Alabama, and into Georgia. Tonight, we are plopping into our beds in Atlanta. Tomorrow morning, we’ll be rising and shining early to go to Children’s Hospital of Atlanta. After that, we’ll continue northward to North Carolina. Unfortunately, I heard back from Duke Children’s Hospital. and I have to be eighteen to be able to visit with patients. 

Looks like I will have to use my time there wisely. I have an appointment to look at the University. Dr. Kleinerman told me some very great things about Duke University! I will be filling out college applications this coming fall. 

One way or another, cancer, I am out to stop you!

Wisdom on the Wall of Livestrong Headquarters

                                      

Louisiana, Wow!

HugoHopeMobile brought us from Houston to Louisiana today! There were drivers along the way who waved at us; they must like our childhood cancer HOPE signs on Hugo. Our drive today was filled with “ooooooohs” and squeals as our eyes feasted on the lushness of the land. I had no idea that there would be roads we would travel here in Louisiana that are built like bridges above the bayou waters– and they go on for miles and miles. The city of Baton Rouge had our jaws dropping to our chins as we gazed at the huge port. And most exciting of all was when I saw my very first legit mossy Louisiana bayou tree! 

Tomorrow morning, we will go to New Orleans Children’s Hospital and tomorrow night, we will attend the American Library Association Conference. I am very, very happy that we are receiving gracious replies from the hospitals we want to visit along our way. I am grateful to each and every person at each hospital for helping me on this mission. What mission is this, Melinda, you ask? 

***Each school day, 46 children are diagnosed with cancer in the U. S.

***Each day, 7 children die of cancer in the U. S.

***When children are diagnosed with cancer, 80% have advanced stages of the disease, as compared to 20% in adults. This is due largely to lack of awareness.

***Childhood cancer research is shockingly underfunded when compared with adult cancers

I am on a mission to help these children. They truly need our help. Please think about what you might be able to do– what you might be able to give. Please consider giving money or time. The very best thing you can give is your true understanding. Once you understand, there will be no way you cannot do something, anything, to make a difference for the future of our dear children.

Sorry no photos… the hotel internet connection won’t allow me to today!

Itinerary

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 – 7/8 Salt Lake City, UT

7/9 Sacramento, CA

7/10 Home

 

 

 

Dell Children’s Hospital and Livestrong Headquarters

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

Gosh, I barely know where to begin to tell you about this epic day of the Hope Tour!

Bone dry Texas finally received the rain today that they have desperately needed for months. Mom and I busted out our umbrella and made a mad dash through the pouring rain to HugoHopeMobile and fired him up to head from Houston to Austin. Yes, I it was backtracking, but for very good reason. We had the opportunity to tour Dell Children’s Hospital and Livestrong Headquarters. There is no way we could miss it!

The three-hour ride through lightning and heavy rain seemed to fly. Everything we saw along the road was interesting, and we gut laughed most of the way there and back about the silliest things. When I first saw Dell Children’s Hospital, it struck me how important it is for us to care for our sick children. We were met right as we walked in by a lovely and kind woman, Kip, who took us all around the hospital to see what an incredible facility they have. We learned that Dell Children’s is the only “Green Certified” children’s hospital in the world! Natural lighting, central gardens, and beautiful, spacious rooms make the hospital very child-friendly. All the rooms are private, they have a wonderful library (and librarian– Hi Gabby!) and they also have a Livestrong Survivorship Center. One of our very favorite things we saw was a fire engine X-ray machine!

Fire Engine X-Ray Machine at Dell Children's Hospital

After visiting Dell, we drove to Livestrong Headquarters where we met Leigh for a tour I will never forget. Right away, Mom and I were struck with Leigh’s warmth. I will tell you that Livestrong Headquarters was nothing like my imagination had dreamed up. Everything, from the building, to what was inside, to the way they run the organization, was truly ingenious. It is perfectly obvious that there are extremely sharp people running the foundation, and they do an incredible job. Yes, my word for everything I saw today at Livestrong is INGENIOUS!

 

Topping off our epic day, we returned to Houston and met my mom’s cousin, Kathy and her husband Rusty for a seafood meal I will remember for a long time! Tomorrow, the HopeMobile heads for New Orleans… visiting New Orleans Children’s Hospital on Friday morning.

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!

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

Fight Like A Girl Post This Month is Poetry

 

 

 

 

 

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

 

 

 

 

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

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.

 

 

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…