A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘CURESearch’

Time to Take Action– 2014 Childhood Cancer Action Days

2014 Childhood Cancer Action Days

Registration opened today for the 2014 Childhood Cancer Action Days in Washington, DC. The Alliance for Childhood Cancer will be the host of this two-day event that will encompass advocacy training and Capitol Hill meetings with Congressional Representatives. The training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. Childhood Cancer Action Days not only educate people who want to learn more about how they can institute change, but they provide everyone in the childhood cancer community an opportunity to share their concerns about current issues before Congress.

Schedule

Monday, June 23, 10:00 am- 6:30 pm / Training and issues presentation, by Soapbox

Tuesday, June 24, 8:00 am- 5:00 pm / Kick-off and Hill visits

The Alliance for Childhood Cancer is a uniting force in the childhood cancer community. The following is a list of members in their organization from their website.

American Academy of Pediatrics , American Cancer Society , American Cancer Society Cancer Action Network , American Childhood Cancer Organization , American Society of Clinical Oncology , American Society of Pediatric Hematology/Oncology , Association of Pediatric Hematology-Oncology Nurses , Association of Pediatric Oncology Social Workers , B+ Foundation , Children’s Brain Tumor Foundation , Children’s Cause for Cancer Advocacy , Children’s Oncology Group , CureSearch for Children’s Cancer , Leukemia & Lymphoma Society , National Children’s Cancer Society , Pediatric Brain Tumor Foundation , Sarcoma Foundation of America , Society of Pediatric Psychology , St. Baldrick’s Foundation

Melinda and I just registered. I encourage others who share our passion to make a change in the world of childhood cancer to do the same. You don’t need to be a member of any of these organizations to register; parents, survivors, and all advocates are welcome.

We need research. We need less toxic treatments. We need access to medicines. We need supplies of medicine that don’t run out. And the list goes on…

This is the registration link!

http://www.allianceforchildhoodcancer.org/events?eventId=855348&EventViewMode=EventDetails

H.R. 2607: Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act

https://www.govtrack.us/congress/bills/113/hr2607

H.R. 2019: Gabriella Miller Kids First Research Act

https://www.govtrack.us/congress/bills/113/hr2019

We need to act and do much, much more to end the suffering of our children. Please join Melinda and many others who are devoting their lives to make sure there is change for the better.

Bear and Chemo Bag

Guest Blogger: Lee Marchiano

 

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Pediatric Cancer Research Revolution

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

I bring you updates on Lane Goodwin today. From Lane’s mom:

 Prayers for Lane Goodwin

“Oh My heart is smiling! I got to see my sweet boy walk! He demanded to go to the bathroom so we picked him up & took him in the wheel chair. He then demanded to walk & did with assistance on 2 occasions!! He says he is in no pain & is currently only on seizure & anti-nausea meds. I noticed him just starring at the ceiling. I asked what he was doing & he said “God is showing me my past.” We continue to pray for a miracle & also continue to reassure him if God says it’s time to go home that it’s ok to go. We are completely in shock about how many people are praying, loving & following our sweet boy’s journey. Thumbs up for Lane is absolutely unbelievable!! We told Lane about all the people, professional athletes, news channels, schools, celebrity’s, radio stations across the country that are posting Thumbs up pictures & he smiled the biggest smile 🙂 Thank you to everyone for loving our family!”
 Lane’s spirit has touched many people– so many that Thumbs Up for Lane is becoming big news!

Story on MSNBC

http://www.msnbc.msn.com/id/49105190/ns/local_news-louisville_ky/t/viral-campaign-gives-boy-fighting-cancer-thumbs/#.UFutAY2uaSo
 The unimaginable hardship and gut-wrenching pain that these families endure has to stop. Our world lost a beautiful soul to childhood cancer recently, in Taylor Filorimo. “Pray for Tay” was the motto while she fought so bravely. Tay’s mom, Maria, continues the fight against childhood cancer with a new motto, “Live for Tay.”

 Maria Coleman Filorimo, Tay’s mom:

 “I promised you “My Voice” will never Go Away. YOUR GOLD Project will be known by All, We will bring Awareness, I LOVE YOU.”

 “It’s not just Riverdale.” Tay, “You are the destiny of change.”

 http://www.dnj.com/videonetwork/1828225843001/Maria-Filorimo-talks-about-her-daughter?fb_action_ids=4321123873658&fb_action_types=og.recommends&fb_ref=videoplayer&fb_source=aggregation&fb_aggregation_id=246965925417366

My friends at Alex’s Lemonade Stand Foundation asked me to share this link for childhood cancer patients. This is a very helpful tool—please check it out!

From Alex’s Lemonade Stand

 https://www.childhoodcancerjournal.com/

 I also want to share this link from Alex’s Lemonade Stand Foundation about the recent Childhood Cancer Symposium in Washington, D.C.

 News from the Childhood Cancer Symposium Via Alex’s Lemonade Stand Foundation

 http://www.alexslemonade.org/campaign/symposium-childhood-cancer/2012-resources

 One more bit of great news from Alex’s Lemonade Stand Foundation by way of PAC2:

“Our annual kudos to our friends at Alex’s Lemonade Stand Foundation for another round of Bridge & Springboard Grants. Bridge Grants are intended to keep scientist’s projects on track while they reapply for NIH funding to ensure novel childhood cancer research projects are not compromised. Springboard Grants are in response to cut-backs in NIH funding of new applications. The Springboard Grant is designed to jump-start new projects with high impact potential for childhood cancer research while other funding is sought.”

 http://www.alexslemonade.org/grants/bridge-grants

 While I am sharing, this WONDERFUL photo came to me via Twitter:

AnnaBell

pic.twitter.com/8EMXrBN

Dear God, I don’t want to puke.   Love, Bree

 Finally, I would like to share this…

The Truth 365 Day 7 Preview Laura Thrall President and CEO CureSearch

http://www.youtube.com/watch?v=rXil2qnMFkM&feature=youtu.be

Did I hear Laura Thrall say, “We are not competing?”

“We are not in competition, we are in cooperation.”

https://gracemelinda.com/2012/09/18/were-not-in-competition-were-in-co-operation/

(Is there an echo in here???!)

Aggregating for Efficiency…

I will call this the

Pediatric Cancer Research Revolution

September Childhood Cancer Awareness Month

Wait a Minute… I AM Somebody!

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

“I wondered why somebody didn’t do something. Then, I realized I am somebody.”

~Author Unknown

One of the most disturbing facts surrounding childhood cancer is the lack of development of new therapies over the past couple of decades. Yes, I mean decades. While a multitude of technological advances, ahem– such as the worldwide web—have seen an explosion of growth, the treatment of childhood cancers is burdened with shortages (methotrexate) and the absence of new therapies. The bottom line here seems to be money. Producing drugs that are needed to fight childhood cancer is not profitable. The factories and labs that were in top shape in the 1970’s are now run-down and outdated.

It’s easy for all of us to think that the economy is bad, or childhood cancer will never affect me, or believe someone else will step in to take care of it all.

The Bottom Bottom Line is we need to act now to provide a life insurance policy for our children of the future.  If money for research is what it takes, then we need to show our care for children by taking responsibility for developing new targeted therapies. Imagine a vaccine that prevents cancer. Imagine.

The truth is we do not even know what causes childhood cancer.

Shouldn’t every one of us want to know what causes it? Every day brings newly diagnosed children, and every day brings death. I want to thank Amy Baldwin and Jordan Smith for allowing me to use Jordan’s photo collage in my post yesterday. Of sixty-six children in the collage, twenty-six children have passed. One third.

Supporting Alex’s Lemonade Stand, CureSearch, and St. Baldrick’s will help us find cures for childhood cancer faster. This is a race, and this is war. I want all of us to be the Navy Seals who put an end to the tortuous reign of childhood cancer.

Your “Navy Seal” opportunities of the day:

Hold a lemonade stand to raise money for Alex’s Lemonade Stand & pediatric cancer research

If you enjoy walking, join the CureSearch Walk in Raleigh N.C.:

Or… give to St. Baldrick’s in memory/honor of a child who has fought cancer… for example, Ethan Jostad

I see two choices here.

1) Be ostriches with our heads buried in the sand (scared you, didn’t I?)

2) Believe, “I am Somebody” and act accordingly.

What a smile, Ethan!

Got YOU SeniorMadness!

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

SeniorMadness is trying its best to keep me far from the Land of Blogging for Childhood Cancer. Whenever a week goes by without writing a post, I feel badly because I know that childhood cancer continues its destruction.  With everything in me, I need to do all I can to stop it. 200 children around the globe are going to die today, and 600 more are going to get diagnosed.  I refuse to allow SeniorMadness to gobble my words.  I love sharing what others are doing, and I love sharing news about advances in research. 

Yesterday, I read this terrific news from St. Baldrick’s:

St. Baldrick’s announces more than $5.1 million grant to the Children’s Oncology Group! For the first time, this year’s grant will also help COG member institutions open four specific high-impact clinical trials which they might otherwise not be able to offer their patients.

http://www.stbaldricks.org/media-and-photos/media-stories/view/headline/title/St.%20Baldrick%E2%80%99s%20Foundation%20Announces%20$5,140,000%20Grant%20to%20the%20Children%E2%80%99s%20Oncology%20Group/id/1559

Clinical trials are the breeding ground for hope for a cure for cancer. While sharing about St. Baldrick’s, I also need to mention and thank the 46 Mommas for their tireless support for St. Baldrick’s. 

Speaking of research, news from Kids Cancer Research Foundation today is about T-Cells.

T-Cell therapy involves taking out the child’s T-Cells, making them stronger, and linking them to a mouse antibody that is then injected back into the child to target the Neuroblastoma (NB) cells.

The T-Cells are natural killer cells, kind of like Pac Men. The mouse antibody portion of the combination helps identify the NB cells, thereby brining the T-Cells to the Neuroblastoma cells to be killed.

Dr. Louis, from Texas Children’s Hospital/Gene Therapy at Baylor College, just published their T-Cell trial in the journal “Blood.” Out of 19 children in 2 groups, 8 children had no disease after frontline treatment. After 3 years, not one of the 8 relapsed. Frank Kalman, executive director of Kid’s Cancer Research Foundation, reports, “Numbers like this don’t exist in NB (neuroblastoma) research.”

Continuing on the subject of research, I want to tell you about a very fun activity coming up this weekend to help support CureSearch.  There is a very brave boy named Sy Sherman who has inspired his Aunt Rachel to “Kick It” into high gear to fight childhood cancer. If you live in the San Francisco Bay area, please check out this great event that will take place on Saturday, October 29th.

 http://www.kick-it.org/events/kicking-cancer

Finally, I want to share a petition. (You know how much I love sharing easy, clickable ways to be an advocate for childhood cancer!)

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

Click, click… nice… way to go!!!

And you, SeniorMadness… hee hee, got you  this time!

You "Kick It" Sy!

Sweet Baby Boy Reefie

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

I first learned of Reefie over a year ago. He captured my heart immediately. He needs our help. This brave baby warrior is suffering from Graft vs. host disease.

Each time I write, I try to provide an opportunity for readers to learn more about childhood cancer and to become childhood cancer advocates. Even the click of a button on your computer can help organizations raise money for research. Today, I am reminded how important it is for us to give not only to childhood cancer research, but how important it is for us to dig deep to help individual children in need.

From CureSearch website:

Graft vs. host disease (GVHD) – This occurs only in an allogeneic blood or marrow transplant. Certain types of donor cells, called T cells (or T lymphocytes) react to the patient’s body and recognize it as “foreign.” Medicines are given post-transplant to prevent this complication, but it may occur despite this.

Acute graft vs. host disease – most commonly occurs within 3 months of transplant. The skin, liver, and intestines may be affected. Skin involvement occurs as a red rash that may be itchy or develop blisters. Liver involvement may cause jaundice or elevation of other liver tests. Intestinal involvement may cause very severe, watery diarrhea. Medicines such as steroids are used to treat GVHD and are often successful in controlling it.

Chronic graft vs. host disease – may occur months or even years after the transplant. Most commonly it is a continuation of acute GVHD. Many different parts of the body may be affected. Skin is the most common organ affected – patients may have red, scaly skin or skin that is thickened and tough. There may also be changes in the lining of the mouth, dry eyes, dry mouth, joint stiffness, lung restriction, and difficulty absorbing nutrients from foods. In addition, patients are at risk for infection because of the medications needed to control the GVHD as well as the effect of GVHD upon the immune system.

Rather than tell Reef’s story in my own words, I will let Kendal explain…

A message from Kendal Robinson

“I am raising money for REEF CARNESON AND HIS FAMILY….REEF IS ONE OF GOD’S MIRACLE WARRIORS…HE IS IN REMISSION FROM CANCER, HOWEVER HE FIGHTS ANOTHER DISEASE CAUSING HIM MUCH PAIN…GRAFT VS. HOST DISEASE AND ALSO DEALS WITH OTHER MEDICAL ISSUES.  REEF IS THE ONLY CHILD IN SOUTH AFRICA TO HAVE RECEIVED A BONE MARROW TRANSPLANT JUST BEFORE HIS 1ST BIRTHDAY, AND IS THE YOUNGEST PERSON TO HAVE RECEIVED ONE THUS FAR.  THE DOCTORS THERE DONT KNOW ENOUGH ABOUT GVHD, SO TREATMENT IS NOT AS GOOD AS IT MIGHT BE IN THE USA.  THIS FAMILY HAS BEEN THROUGH SO MUCH THE LAST TWO YEARS, IT’S BEEN NON STOP!!!  REEF IS A FIGHTER…AS THERE HAVE BEEN A FEW TIMES THEY THOUGHT THEY WOULD LOSE HIM….I BELIEVE GOD HAS DIFFERENT PLANS FOR REEF.  ONE CAN ONLY IMAGINE WHAT IT MUST BE LIKE TO STRUGGLE FINANCIALLY, WHILE TRYING TO SAVE YOUR CHILD AT THE SAME TIME…..PLEASE FIND IT IN YOUR HEART TO GIVE TO THIS FAMILY, AS THEY ARE LIKE A FAMILY TO ME….I LOVE THEM DEARLY AND HAVE BECOME VERY CLOSE TO THE ENTIRE FAMILY.  TO READ ABOUT REEF’S STORY…YOU CAN GO TO SAVEBABYREEF.COM  OR ON FB, TYPE IN 1000 CANDLES FOR BABY REEF, THAT WILL GIVE YOU A BETTER OUTLOOK ON THIS FAMILY’S STORY…GOD BLESS AND THANK YOU.

WE NEED YOUR HELP NOW, TO GET REEFIE TO THE USA FOR THE TREATMENT HE SO DESERVES…PLEASE PLEASE FIND IT IN YOUR HEART TO GIVE….THIS FAMILY HAS A VERY LONG JOURNEY TO TRAVEL BEFORE REEF IS ABLE TO BE THE BOY HE SO LONGS TO BE….PLEASE HELP BRING REEF TO THE USA…..

 The money collected will go towards THE MANY MEDICAL NEEDS FOR REEF AND TO HELP THE FAMILY WITH HOUSEHOLD BILLS, FOOD AND LIL’ SISTER MISS PAYTENS NEEDS TOO.”

http://www.gofundme.com/ReefieCarneson-Family

Baby Reef… may the citizens of the world share their blessings by giving all that you need, and may the United States welcome you with wide open, healing arms.

May you receive healing, sweet baby boy.

Let's help Reefie!

LoveBug, Legislation and Beaver Dams

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

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

Happy New Year, Squeak-Squeak!

Dear Oprah,

I wish Happy New Year to you and your staff. The very first thing I must do in 2011 is to write to you (again—appreciate your patience, letter reader producers.) There are those who wonder why I “waste” my time writing each day to you. Although I know my voice is barely a “Squeak,” I will keep “Squeaking” to help bring awareness and a cure for childhood cancer.

Childhood cancer is devastating beyond what my words here can describe. I understand why it has been overlooked in awareness, funding and research. It is just too hard for people to look. It is too gut-wrenching for people to truly comprehend the suffering of the children and their families. What I have learned is that a cure for childhood cancer is within our reach. CureSearch and Children’s Oncology Group state that with adequate funding, a cure for childhood cancer is within our reach.

Funding.

Lack of money for research is the MONSTER aiding childhood cancer to continue its destruction.

What I am asking, Oprah, is that you please gather experts on childhood cancer together with those philanthropists who have pledged to give away large portions of their fortunes so that we can begin building an enormous Childhood Cancer War Machine.

How is it that our country has the funds to build war machines that kill, but we won’t build one to save the lives of our dearly loved children? Please help me make 2011 the year that we make childhood cancer run for its life.

Me and my “Squeak” will be checking in with you again tomorrow,

With great hope,

Melinda

16 Year-Old Author of Grace: A Child’s Intimate Journey Through Cancer and Recovery 

 

 

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