We love our Dragonflies!

Suzanne Leigh, Special to The Chronicle

Monday, February 7, 2011

In a 2005 study, published in the Journal of Clinical Oncology,  researchers from the Children's Hospital of Philadelphiafound that of 171 mothers and fathers of young patients undergoing treatment for cancer,all but one had post-traumatic stress, a disorder described as "closely related but not as severe as full-blown PTSD."

Although PTS does not meet all the criteria established by the American Psychiatric Association for a diagnosis of PTSD,some clinicians use the terms interchangeably.Dr. Richard Shaw, a child psychiatrist at Stanford's Lucile Packard Children's Hospital,says people with PTS could "exhibit two symptoms of one criterion when three are required for a PTSD diagnosis.But this distinction might not be significant because those two symptoms could be very extreme."

Symptoms

Among those symptoms listed by the psychiatric association are intense fear, helplessness or horror; recurrent nightmares and flashbacks; irritability, anger outbursts, heightened startle response;
and avoidance of events, people or places associated with the trauma.

Those fears are not unwarranted for parents of the 1 in 300 children diagnosed with cancer.While the cure rate in children for a type of leukemia called ALL has greatly improved over the past few decades,prognoses for other less common leukemias and cancers are not as encouraging.Moreover, studies have demonstrated that the toxicity of chemotherapy and radiationcan cause secondary cancers and heart disease several years after treatment.

Roni Curtis-Valle and husband Edgar Valle of Fresno are familiar with some of the PTSD symptoms. Prior to their 6-year-old daughter Natalia's brain tumor diagnosis, Curtis-Valle says, she and her husband had been "getting mad at her for carelessness and things like dropping water on the carpet." After her death, they had recurrent nightmares over those admonitions: Why hadn't they recognized that the mishaps were caused by a tumor affecting part of the brain controlling fine motor skills?

Karen Hatfield of Coarsegold (Madera County),whose 12-year-old son Isaac has battled a low-grade tumor for five years,says she and her husband, Wade, have found ways to counter their stressby shifting the focus "away from cancer being the center of our lives."Her participation in the group 46 Mommas Shave for the Brave,which raises money for childhood cancer research,was "an empowering experience that created solidarity among the mothers." Still, the couple's fear and anxiety peak in the days leading up to quarterly MRIs, Hatfield says."I know from our personal experience that tumors can come back with no symptoms.How do you know when you're safe?You can't.Is your child going to get a three-month reprieve,or is this the scan that forces you to enter the world of toxic chemo drugs, painful pokes, nausea and loss of hair?"Even during calm periods, a seemingly mundane comment can derail Hatfield.While driving recently, she overheard her daughter ask Isaac what he wanted to be when he grew up.From her rearview mirror Hatfield scanned his face."I don't know," he said.Hatfield was momentarily gripped by a wave of terror.

Push to screen parents

Packard psychiatrist Shaw says that doctors have been "slow to tune into the issue of PTSD" in parents of children with cancer. His research on PTSD in parents of infants in intensive care, and a new study on whether "brief supportive psychotherapy" is helpful, may prove instructive for clinicians interacting with parents of children with cancer, he says. Shaw believes social workers can play a key role in identifying parents who might have trouble coping with their child's illness. At Packard, the social workers screen families at admission and monitor them during their child's treatment and beyond. Those who seem most vulnerable are referred for psychiatric consultations early in the process. 

Sensitive wording helps Pediatric oncologist Dr. Peter Goldsby, at UCSF Benioff Children's Hospital, where Mason Wellbeloved, Natalia Valle and Isaac Hatfield have been treated, says a child's oncologist also bears some responsibility in providing emotional support. Sensitive wording of prognoses may help cushion trauma, especially in cases with treatment-resistant cancers, he says. Goldsby avoids phrases like "no hope" and "nothing else we can do" and reminds parents there is always hope, albeit "hope" that has to be redefined. "Hope may need to change from a goal of cure to a goal that their child's life will be exceptionally special and they will leave this world with dignity and without distress." But even the best efforts of a child's medical team may not be good enough, says Goldsby. "We need to be asking parents how we can improve - whether that means having more social workers, establishing a parent-to-parent hot line or researching new ways of providing optimal care for parents."

Coping tips for parents

-- Focus on today and not the future, and on what you can control versus what you cannot.

-- Recognize depression triggers: anniversaries of a diagnosis, your child's birthday or doctor appointments.

-- When seeking support, differentiate between those who give it and those who drain your energy.

-- Reach out to other parents who have a child with a similar diagnosis. -- Get involved in an advocacy group for your child's disease.

-- Set up a website, with an organization such as Caringbridge.com, so that you can control information about your child's health.

Compiled by pediatric oncology social workers at UCSF Benioff Children's Hospital

On March, 23rd, the Stonelick Township Fire Department, Symmes and Stonelick Township officials and Dragonfly Families participated in a ribbon-cutting ceremony for the Stonelick Township’s Fire Department’s (STFD) newly renovated fire truck at The Dragonfly Foundation’s new patient/family space located at 9275 Governors Way in Cincinnati, Ohio. The fire truck, believed to be the first Cincinnati-area, in-use emergency response vehicle to be decorated on behalf of a non-profit, has been decorated to raise awareness for The Dragonfly Foundation, a non-profit organization committed to bringing comfort and joy to kids and young adults with cancer. 

Herman Miller, maker of innovative office furniture, equipment, and home furnishings, donated two VERY comfortable chairs for our volunteers to use at The Landing... Sitting behind the reception desk has never been so comfortable!

"You and TDF have played a pretty big role in saving my life. I know you haven't been involved in the direct care wise.. but if it wasn't for you and everything you've done.. I probably would have lost it a long time ago. I am not just saying that either. There are times where I feel like I am barely hanging on and if it wasn't for everything you've done.. this place/situation would be an even lonelier situation than it already is. So thank you."

Blood donors can be twice as nice in February. Give blood for local patients and earn money for The Dragonfly Foundation at the same time!

Hoxworth is challenging area charitable non-profit organizations to recruit blood donors. It sounds nice, but this is a blood battle!

The Dragonfly Foundation is competing with other nonprofits to see who can score the most points by recruiting blood donors. The stakes are high. The top charity will win $10,000 in cash!! For information about where to donate blood, please click here (mention Dragonfly!!).

With medical costs being so high, our Dragonflies really do not have the funds to do fun things together as a family. Movies, for example, can be too costly for many of our Dragonflies. That's why we are so grateful to Danbarry Cinemas helping us offer a Monthly Movie Morning to our patients and their siblings and parents/caregivers.

Here is a note we received from a family that attended our first Monthly Movie Morning:

"Hi Ria and Christine,

We had a great time at the movie.  I forgot what it was like to actually sit down and watch a whole movie! I honestly cannot tell you last time I have.   My family really liked "The Guardians".  I think it may be a new favorite - how appropriate that it was about believing and hope.  What a great family memory from that wonderful adventure.

Thank You!!!

The M Family"

Reprinted with permission from our Dragonfly family...

"E has had a hard week with her chemo. This morning she woke up more nauseated than normal, shaky and feeling like jelly. Her little legs could not support her body this morning. She stayed home and slept all day. Tuesday, she noticed her hair was falling out at school, but held on to the hope that it was maybe just thinning out a little. When she got home, she got into the bath tub to relax and feel better. I heard a scream that sent chills down my spine, and I ran into the bathroom. Ewas crying holding her head in her hands and all you could see was hair floating all around her in the bath tub. I quickly grabbed a towel, wrapped her so tight and held her with all my might. We cried together and began to try and make sense of something that makes no sense. Tonight she has lost the last of her beautiful curls. I wish I could take all this pain away from her. I feel so helpless tonight. Her brothers have not left her side and are suffering along side of her. It is cruel what cancer does to families. Her brother, L, ran and grabbed the hair clippers and shaved his head and had his Dad shaved a cancer ribbon in the back of his head. Her other brothers, A and N, held her tight and just keep telling her how beautiful she was. The kids wouldn't let her go to bed without a smile and a laugh. She is such a fighter and inspires us. We are very sad tonight but we are not defeated. We know God has big plans for E. Please hold our family close to your hearts and pray that God will continue to comfort us."

*** This is the 5th time she has lost her hair...she is 8 and is devastated.  The loss and pain they experience is shared by 90% of chemotherapy patients as they experience hair loss. Please support kids and families who are affected by cancer or a blood disease. Please.

January 3, 2013, Mason, OH -- The Dragonfly Foundation was among 14 charities globally to receive the ATP ACES for Charity grant in the amount of $10,000 for 2013. The Western & Southern Open tennis tournament that is played each August in Mason, OH nominated The Dragonfly Foundation for the generous grant.

The Dragonfly Foundation works closely with Cincinnati Children’s Hospital Medical Center to provide comfort and joy to kids and young adults with cancer and blood diseases. Gifting programs for patients and families, ongoing support programs, a patient/family space in northern Cincinnati, and weekly, sometimes daily, social events are some of the ways The Dragonfly Foundation “cares while they wait for a cure.”

Since 1974, the Western & Southern Open had donated more than $7.7 million to Cincinnati Children’s. The hospital is the primary beneficiary of the longstanding event, which is supported by more than 1300 annual volunteers.

“The mission of The Dragonfly Foundation to help young patients and families affected by cancer and blood diseases is one that marries perfectly with the tournament’s charitable endeavors,” said Western & Southern Open CEO, Elaine Bruening. “Their tireless efforts made our nomination very easy. We are glad to be able to do our part to help sustain The Dragonfly Foundation’s mission.”

The Dragonfly Foundation

The award-winning Dragonfly Foundation [a 501(c)(3)] provides CARE: Caring, Community and Awareness Results in Emotional Health. The Foundation currently works in partnership with the Cancer & Blood Diseases Institute of Cincinnati Children’s Hospital Medical Center to provide support, distractions and experiences that can help ease the pain and fear that young cancer and blood disease patients and their families experience on a daily basis. For more information, please visit http://www.beAdragonfly.org. To make a $5 donation, Text JOY to 80100. Standard text messaging rates may apply.

About the Western Southern Open

The Western & Southern Open will be held August 10-18, 2013 at the Lindner Family Tennis Center, 20 miles north of Cincinnati in Mason, OH. It is the nation’s oldest professional tennis tournament still held in its original city. The tournament is one of the prestigious ATP Masters 1000 events on the men’s tour and a Premier 5 event for the Women’s Tennis Association (WTA) – making it one of only five events in the world outside of the grand slams with events of that caliber occurring during the same week at the same venue. A recent study conducted by the University of Cincinnati concluded that the event generated $62.5 million in economic impact in 2011. The event is seen by more than 60 million people in 170 countries worldwide and is broadcast domestically on Tennis Channel, ESPN2 and CBS. The tournament is also one of the last stops on the Emirates Airline US Open Series prior to the US Open in New York.

More information about ATP Aces for Charity
Entering its third year in 2013, the ATP ACES For Charity program is a global initiative aimed at giving back to communities where ATP World Tour events are played, as well as recognizing and supporting tournament and player charitable initiatives. In addition to supporting The Dragonfly Foundation, the 2013 Aces for Charity program will support a wide range of causes worldwide, including childhood education in Serbia and Malaysia; tennis programs for disadvantaged youth in Colombia, Portugal and Tanzania; healthcare in Eastbourne and the Ukraine; and social services for the elderly in Romania. For information about ATP Aces for Charity, please visit http://www.atpworldtour.com/News/Tennis/2013/Charity/ATP-ACES-Charity-Grants.aspx.

XXX

The Dragonfly Foundation has been approved by the Mobile Giving Foundation! This enables almost anyone with a mobile phone or smart device to easily make a secure donation.

Text the word CARE to 80100 to donate $5.00 to The Dragonfly Foundation!

From a Dragonfly Mom:
I just wanted to let you know that on Sunday night, we went through the mail and B had a Christmas card from the Dragonfly Foundation with a gift certificate for Toys R Us. Well, Monday morning was B’s first 6 month MRI. We don’t have results yet, but words cannot explain to you how wonderful it was for her to be able to go to the toy store and pick some things out for herself after such a long morning with sedation and everything. B. slept with her gift certificate on Sunday night, and was so excited to go that she didn’t focus so much on her MRI. From the bottom of my heart, thank you! MERRY CHRISTMAS DRAGONFLY FOUNDATION!

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From a Dragonfly Dad (JZ) who wrote on our FB Page about another Dragonfly Dad that sought him out after seeing his Dragonfly bumper sticker in the parking lot of an office building:
"Proud to say my family is apart of The Dragonfly Foundation! Today I am sitting at work and my receptionist brings a gentleman over who seen my dragonfly bumper sticker. You see we are all connected and family and have a bond. We talked about our children and the obstacles they have overcame! TF is the boys name and I beg you all to pray for him and his family. I also urge everyone who is wanting to donate any money or toys to a great cause to think of doing so to The Dragonfly Foundation! Just remember this is the season for giving rather than receiving and to see a smile on a sick child's face is priceless for their family. #thankful"

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From a Dragonfly Mom on FB:
"Thank u sooooo much for K's gift!!!!:) he got the biggest smile when he opened his card!!!! It was really appreciated!!!!:) he's had a long year with 5 surgeries. It really brightens his day! Luv u dragonfly!:)"
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From a Dragonfly Mom:
"M was so excited: 1. to receive mail and 2. to have a gift card to "THE MALL". She just knows that Claire's is in the mall.  She was so excited and was carrying her card around...... Thank you all, yet again, for giving! We are blessed, so very blessed to have Dragonfly in our life! Merry, merry Christmas!"

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From a Dragonfly Mom on FB:
"The D family would just like to express how much we LOVE Dragonfly!"
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From a Dragonfly Volunteer:
One of our volunteers said this: "Thank you for letting me in the family. I think my heart is shaped like a dragonfly."

_____________________________________________

Thank you for continuing to support our mission! Happy holidays!

Sending a Cincy Favorites Holiday Gift to someone you care about is guaranteed to elicit joy and a smile. That’s why it was natural for The Montgomery Inn Family to create a special Cincinnati Favorites package benefitting The Dragonfly Foundation. The "Dragonfly Pack" includes 2 slabs of ribs, 2 pints of Graeter’s Ice Cream, a bottle of Montgomery Inn Sauce, 2 lbs. of Queen City Mets/Brats and the beautifully illustrated book “Cincinnati Night Before Christmas,” along with Dragonfly Foundation literature and bumper stickers.

To order your Dragonfly Pack for friends, family, employees or associates, please click here!

Please register your preference of having The Dragonfly Foundation be a beneficiary of your shopping experience at www.krogercommunityrewards.com. Don't forget to re-register annually!

Thank you for your continued support!

"That's the most special night I have ever spent at the Ball Park." - Marty Brennaman on the promo video for 513 Rocks!

(See 1:37)

Thanks to the generosity of our sponsors, we have a suite at US Bank Arena for every event in 2012. This picture is worth a million words...

Thanks to an invitation from Cincinnati Children's Hospital, The Dragonfly Foundation again attended the Hospital's Survivor Day at the Cincinnati Zoo. (The amount of help provided by our volunteers can't be overstated!)

It was wonderful to see our Dragonflies: the patients, siblings and parents, as well as others who are in and out of treatment, but who have not yet registered with our organization. It was great to see hair where there was once baldness, it was great to see smiles on faces that used to have feeding tubes taped to cheeks, it was great to see soccer, baseball and I'm Still Me shirts on kids who struggled to walk the zoo last year.

It was even more wonderful though to see the Dragonflies who are in the midst of treatment, who still have bald heads and feeding tubes, who have outgrown the soccer and baseball shirts while in hospital rooms. They were there and they -- and their family -- were happy.

It was a balmy 72 degrees today. I bet the sun was smiling, too!

Loved every minute of the event. Can't wait till next year!

We continue to be grateful to the wonderful health care provided by Cincinnati Children's. We are glad to be your partner in caring for these young patients and their families.

One of our Dragonfly mom's posted an open letter and her response to another cancer mom.

An Open Letter From a Cancer Mom

From one onco mom to another...

Have you ever had the feeling you lose all your Mom-powers when you walk into the hospital?

Have you ever felt that anger when they stick your child with needles and push pipes into him and inject him with poison and there's nothing you can do about it?

Ever felt the mistrust when you look into your child eyes and you know that you lied, that it will hurt?

Ever had the feeling of unimaginable pain when the child of another onco-couple loses the fight and you wonder when it's going to be your turn?

Ever experienced that feeling of speechlessness when your child comes to you and asks you when Jesus is coming to fetch them home?

Ever felt as if the Earth is trying to suck you in and you can't get out when those theatre doors close behind you?

Ever felt that you could murder someone with your bare hands when they make stupid remarks about your child?

Ever felt that you want to run away and sit in a corner and just forget about everything for a little while?

How do you know when you've reached the limit of the amount of bad news you can take? Everyone always wants to know how things are going and if you're still strong enough. It's as if they expect that you'll have a nervous breakdown any moment, and no-one knows what to do if Mom starts crying uncontrollably... except that they're standing there with the psychologist's number all ready... I mean freaking HELL!

Definitely my experience.

My life fell apart the day I found out my child has cancer. Every time you hear bad news another little piece of your heart breaks and it's as if you eventually have no more tears left. What you have in place of tears is an unquenchable rage and hardness, and unfortunately the person who phones first is the one to be attacked. Someone just has to look funny at your child's bald head and you feel like you're about to lose your mind and attack him. But then you get the ones who will actually tell you off for cutting your little kids hair so short. So forgive me if I don't always have my moods under control, but sometimes it's just flippin' impossible.

You don't always want to hear that you must be strong and you must keep believing; it's very difficult if you're constantly being given bad news.

So, to every cancer mother out there:

You are allowed to be angry
You are allowed to shout and scream
You are allowed to be tired
You are allowed to get sick
You ARE ALLOWED to cry!

We are also just human, we don't have super-powers, being strong isn't our only option, we are going to cry and get angry, we are going to get sick and tired, so stop watching us like hawks and waiting for us to fall apart. For us there is only one thing to focus on and that is GOOD NEWS about our children. You live every single day for that extra bit of hope that today will be a pain-free/medicine-free day.

I hate days like these... We have had 16 of them now.

People often say to us, as they did last night, "I don't know how you do it... how are you able to be around such sadness." My response:

• "I don't see/hear them cry (usually). We create happy times, and bring them comfort and joy." (The nurses, doctors, Child Life Specialists, Social Workers, siblings and parents: now those are the people who see the actual day-to-day devastation of cancer and blood diseases...)
• "No one knows when their time will be up, and wouldn't it be great if you knew that there were people entirely dedicated to making sure you knew they cared and to making you smile?"
• "We make kids and families smile... every day."

Today, is another day of making families smile. We gave away tickets to Monday's Reds game and to Coney Island (thanks so the generous donation of Cincinnati Bell and Cricket Communications, respectively). We have contacted families and registered them as Dragonflies. We have answered emails and posted on FB to families who have become our family.

But... we barely had a chance to bring young GP into the fold before we lost her.

She and her family were supposed to be at the game on Monday. They were supposed to have a good day and create memories... They were supposed to laugh and smile. Instead, they are planning a funeral for their 7 year old daughter.

Damn.

Please, please tell everyone you know about The Dragonfly Foundation. Tell people today. You'd want to know about us if a young person in your family was diagnosed.

We wish we had more time with her.

I can only imagine what her family is wishing right now.

Received this note from one of the Dragonfly mom's whose daughter was on the field when Marty Brennaman shaved his head. (To see the video of the event, please visit our home page.)

"Ria,
 
We were so excited to hear the Marty Brennaman anouncement that he is a spokesperson for Dragonfly Foundation.  How awesome!!  So excited to hear about his continued support!!!!
 
I have to tell you, that whole weekend after Marty shaved his head, Abby was talking about Marty.  However, she says "Barney" instead of "Marty". "Barney kissed me....Barney loves me." Too priceless!  It's so cute when she says it, I don't think he will mind being called that either.
 
So today, three weeks later, I put Abby's "I'M STILL ME" shirt on her.   She was so excited and said, "Are we going to see Barney?" I just LOVE it!!!   
:)
 
Melissa"

Kyle Harness answered this question with this note:

Like many people, I always felt obligated to give back to causes I believed in.  I wrote checks every year to various environmental organizations, cancer groups, and local charities working to benefit my community in one way or the other.  I am also a runner, so I ran all the races, got the t-shirts and made a donation to charity along the way.  This is all well and good but somehow donating money and running a few races just didn’t seem to cut it.  As part of a choral group in high school, I had spent many hours working in soup kitchens and delivering Christmas presents to underprivileged families.  Somehow I had managed to get away from the hands-on part of charitable work and decided that giving money is just as good.  Only it isn’t.  In my mid-twenties, I decided to put my tools and handyman skills to use and worked with Habitat for Humanity, getting back to the hands-on side of things. 

In 2011, I was at a point in my career in Health Physics and Radiation Protection where I wanted to move from industry over to the medical community so that I could put my skills to use and help out in cancer treatment.  I quickly found out that making that move would be more difficult than I thought.  15 years of experience in industry equals exactly zero years of experience in a hospital environment.  After doing some research, I found out that I could volunteer my time working in the cancer treatment environment without it being part of my job.  I volunteered to work with Cincinnati Children’s Hospital Medical Center and got assigned to the 5^th and 6^th floor of the A Building. (Anyone associated with Children’s or the non-profits that work with them know that this is a very challenging area to work in.  Most of our Dragonflies have made a stop here at some point in their treatment).  I was super excited to get this opportunity until I realized that the time I would have to dedicate to Children’s just wasn’t possible for me.

So, I looked around a little more to see what Cincinnati had to offer in the way of cancer-related non-profits.  There are a few out there, but I didn’t find one that really fit what I was looking for.   Then I stumbled upon The Dragonfly Foundation.  They were a young organization, barely a year old, but they had vision and showed promise.  My first experience working with Dragonfly was at the 2011 Survivor’s Day picnic at the Cincinnati Zoo.  It was an amazing experience.  After getting to work with Christine and Ria and all of the incredible volunteers that make Dragonfly what it is, I knew I had found the place for me. 

I have volunteered at most of the major events and many of the smaller ones since then and have recruited my fiancé and future stepdaughter as well.  I love the work that Dragonfly does and couldn’t be more proud to be a part of the team.

Kyle Harness

In two years, we have lost 15 children/young adults to the horror of cancer and blood diseases. Our most recent loss was "B". Her mom, like 13 others, contacted us within 24 hours of her child's passing to thank us for "all the wonderful things we had given her while she was here." She also thanked us for "allowing her to be a part of your organization." 

These calls... 13 of 15 families, calling us to thank us immediately after their child's passing... Hard to fathom.

What we do seems so small in the scheme of things, yet seem to be make such a profound difference in the lives of our Dragonflies and their families.

Thank you to everyone who helped us make "B", her family and our 200+ other families, smile.

Day 3 of the Media Blitz continues...

WLW gave us more than an hour of airtime today alone!

ABC, CBS, FOX and NBC local news stations ran our stories and then came to Kings Island to film us during our 2nd Annual Kings Island Day! We have been on/in USA Today's online edition, ESPN National and on the West Coast feed of SportsCenter!

We have raised more than $5,000 since Friday's game and have gained many new subscribers to our website.

Oh, and we just hit 3,004 FB friends... (We were at 2,263 on Saturday morning!) Incredible, considering that we are only 2 years old!

Our families marvel at the response we continue to receive. They tell us they feel like everyone is catching up to what they already know... that we are making a difference.

Christine Neitzke and I (@Ria Davidson) are the co-founders of The Dragonfly Foundation. Together, we have more than 45 years (yikes!!) of hard-core PR consulting experience (Google me). However, PR has been at the bottom of our "To Do List." Instead, we have, in the last 2 years, donated 26 laptops, given away more than 2,500 tickets to local events, provided hundreds of patients with new diagnosis/extended stay care packages, published a book with tips and practical advice, donated toys, videogames, launched the Beads of Courage at the hospital, and much, much more.

On the flip side, we also have lost 14 kids in the process... Kids who didn't have the luxury of a cure, the luxury of time....

Marty wearing our shirt was a blessing. In one moment, he made all of Cincinnati take notice of who we are and what we do. Our goal is to become a national organization -- after we can do everything to sustain our support for Cincinnati Children's Hospital Medical Center's Cancer and Blood Diseases Institute.

To do that we need money, we need support, and we need a home (currently looking for someone to donate space to us in West Chester, Mason, Liberty Twp.).

Please refer everyone to this website and encourage them to register to get more information.

We have a story to tell and we are grateful that people are listening.

Phones, email, Twitter and Facebook posts have been off the hook with people clamoring for our "I'm Still Me" and Made You Look" t-shirts! While we don't yet have a true online store, we have cobbled a way to help meet demand.

To order t-shirts, please click here!

Be sure to read this wonderful article that was just posted in the Enquirer!!! Click here!

In case you missed it, Marty Brennaman shaved his head last night to fulfill a promise. The event, along with Marty's 70th birthday, was celebrated last night at the Reds Stadium! At the end of the event, Marty took his Reds jersey off to reveal The Dragonfly Foundation's I'm Still Me shirt!!!!! (WE STARTED CRYING!!!) Then our kids ran over to him an hugged him on their own accord!!!!! (WE STARTED SOBBING!!!) The crowd went wild when he explained how one of our Dragonflies said that now Marty will look like them.

Our "I'm Still Me" shirt, along with another version that reads "Made You Look" is just the beginning of what we hope will be our "I'm Still Me" Hair Loss Program and Public Awareness Campaign. We are working to create this program in conjunction with Cincinnati Children's Hospital Medical Center's Cancer and Blood Diseases Institute. This program fits within our mission to provide comfort and joy to kids and young adults with cancer and blood diseases. We hope this campaign will remind people to care while we wait for a cure.

If you have not done so already, please register on this site to receive our newsletters and other information.

Huge thanks to Marty Brennaman, The Cincinnati Reds, The Reds Foundation and Cincinnati Bell/CBTS for all they do to support and care for our community's children. We can't thank you enough.

Yesterday, a Dragonfly mom called wanting to give Sugarland concert tickets to other Dragonfly moms so that they could have a "Moms' Night Out." They are all going to meet ahead of time and drive to the concert together. Isn't that wonderful?!?!

Then, today, another Dragonfly mom, who was updating me on a fundraiser her son's TaeKwonDo school is holding for Dragonfly, told me that another Dragonfly mom will be helping her put up posters near the school!!!

Isn't it amazing that they are doing this for us and for each other???

With the help of our crazily devoted volunteers and Two Men & A Truck (Mason), we finally finished moving The Landing into a storage location where it will stay for the next few weeks. This was a HUGE undertaking.... (Poor Jodi!!! And a huge thank you to all of our other volunteers who worked so hard in the heat to move all of our stuff!!)

We still have no firm news, but I did talk to someone today who wants to get a group together to purchase a building for us!! (Imagine!!!??)

I thought I would share this note from one of our Dragonfly moms who asked me to share this with everyone who made The Landing possible:

Hello,
My name is Angie K., my son, Myles, is undergoing treatment for his second lymphoma and is also about to undergo his third bone marrow transplant for an immune deficiency he has.  This lymphoma treatment was much more difficult for him the second time around, some if it had to do with his age, he is now 10 years old and before he was 3 years old, but most of it is the treatment.  During his treatment, he is unable to go out in public and have fun. So no zoo, museum, etc.  because the risk of infection is too great.  He was, however, able to meet a friend at The Landing and play during his 4 hour day pass from the hospital.  It was amazing.  He had so much fun, he's been there 3 times now and frequently begs to go back.  Our 3 year old thoroughly enjoyed it too.  It was so nice to see them smile and so important for both of them to let go and forget medical stuff for a while.  Our family cannot thank you enough for giving our son a safe, fun place to go where he can relax and do normal kid things.  It may seem so small to others but it's huge to us and I know all of the other Dragonfly families feel the same way.  Of course Myles can come home on his passes too, but that gets boring after a while, and I'm beyond grateful he has a place he can go that he actually looks forward to. Thank you for making this all possible, thank you from the bottom of our hearts.

Sincerely,
Angie K.

*** I hope we can find a permanent home quickly...

"Thank you, Dragonfly volunteers and supporters, for giving us a perfect day where the "normal" kids stuck out and our Dragonfly heroes were just one of the crowd. ♥ "

We love it when kids raise money to help our kids. Today, while we were at a picnic for our patients and their families, a little girl was trying to raise money by selling lemonade at her neighborhood pool. Thanks, L, for helping us continue to make kids and families smile!!!

One of our Dragonfly mom's posted this on our private Facebook page for our patients and their families. We have reposted this with her permission.

"When I woke up this morning I was overwhelmed with a nervous excitement. Today was our dragonfly picnic. I was so excited to go and meet people, to match faces with names and have fun but I was also nervous. Since this was our first picnic I didn't know what to expect. Would I have to discuss J? Would I have to explain his medical issues? Would others explain to me what their children are enduring? I wasn't sure that I could handle that...

Welcomed by amazing volunteers my nerves were quickly eased. The setup of the rooms and outside areas allowed for us to "be a part of the crowd" but also "sneak away" when our children were overwhelmed. It allowed us to be outside but come in when the sun got too hot. It allowed immunosuppressed kiddos a space to keep them safe. After be initially impressed I waited for someone to come over the speaker to announce a guest speaker...someone was going to talk about why we were there, weren't they?

Today was simply amazing:

There wasn't a guest speaker. We all knew why we were there. We have all traveled similar journeys... We were all there for the same reason...our children... We were in a place where central lines didn't matter, finances weren't of discussion and fun was on the agenda!! Today wasn't about illness, chemo or death. It was about togetherness, family and life.

Today was the day I've been waiting for and needing...

I have been struggling a great deal. The past 2 years have included birth, illness, surgeries, cancer, chemotherapy, divorce, financial hardship and mainly a loss of myself. Today I stood among many who are walking in my shoes... They didn't have to tell me that they understood... There was an unsaid comfort in the air. It was the most amazing feeling. It was exactly what I needed to regain my focus on what's important...my children! I'm not sure how the rest will fall into place but I can do this. The moment I think I can't I will close my eyes and picture these moments:

A little girl coming up, asking what "that" is. S replied, "it's her central line.". The little girl pulled up her dress and said, "I have two!!!!!!!"

Moms who are bald and nobody had to ask why!!!!

A little girl walking onto a field for a water balloon fight using her walker....SMILING!!! The smile on her face was about as priceless as it gets!!!

The best water balloon fight I have ever seen!!!

I'll picture today...

I'll picture my dragonfly family..

I never wanted to be a dragonfly...nobody ever does...but I am proud to be one and I'm so blessed to be a part of such an amazing family....my dragonfly family!!!!

The only other thing I can say is thank you for today... I know you understand and that is why today meant so much to me!!!! ♥

Believe in dragonflies!!!"

We are definitely grateful to our picnic sponsors (I'll get to them in a sec), but we have to recognize all the wonderful volunteers who helped put together (and clean up) our 2nd annual picnic! From our dedicated core volunteers (Amy M, Amy V., Caron, Christen, Deb, Drew, Jim, Jodi, Joe, Julie, Karen, Kim, Kyle, Mand-e, Maria Q, Maria S., Matt D., Matt N., Michelle, Nicole, Rob) to Bob Henry (our chef!!), Rick Gaffney (our magician), Michael Suer (our photographer), to our new recruits (LOVE THE TEENS THAT CAME TO HELP!) and to all the wonderful people who filled and delivered THOUSANDS of water balloons!

We also have to thank:

"Big Time Rush" actress and film star, Ciara Bravo, for visiting with our kids and signing autographs!

Batman for taking time out of his crimefighting duties to make our kids smile... And...

Our event sponsors Cincinnati Circus Company, Georgia-Pacific, Peoples First, Covenant Relationship Ministries, Society of American Magicians (Rick Gaffney), & The Curtin Family!

From a Dragonfly Mom, posted on our private FB page:

"While I am thankful that there are a lot of people who have no idea what it is like to watch your child go thru treatment for cancer, I wish they could show more empathy to those of us who have. Someone was asking about the camp my kids were at and said that we and the kids needed to put this whole cancer thing behind us and wouldn't it be nice when we could. She felt that continuing to attend camp and other cancer related activities was not good for my child. Seriously, like the moment she takes her last chemo we are going to be like ok, all done with this cancer thing. She has side effects that will keep us going to the hospital and follow ups with oncology for years!! Every cough, bloody nose, ache and pain will make me nervous. she'll have to deal with all she went thru for the rest of her life. Like it all just goes away, come on people!"

**This is the reason why we keep kids from the date of diagnosis until they are 5-years free of their disease.

Please remember that the fear of recurrence is always there. Life is never the same...

Every day we have stories to tell, things that people say or do that take our breath away. Today, it was one of our Dragonfly moms telling me, "You (Dragonfly) saved my family."

In addition to the in-hospital and out-of-hospital events and programs we offer, we try to stay in close contact with Dragonfly families who need us or who are experiencing a crisis. Whether we watch their CarePages, take calls when they need someone to talk to ("I just need to hear someone breathe on the other end of the line"), interact with them on Facebook, Twitter, SMS, etc., we try to be there when we can, as often as we can.

Several months ago, we received a call from a Dragonfly mom. She was experiencing a crisis in her marriage related to the toll their child's disease had taken on the family. She said that she called us because she needed someone "safe" to talk to, someone who wouldn't judge, who understood the horror of treatment and would be willing to listen to her vent. The day was a very dark one for this mom. Her pain was palpable.

Fast forward several months... Today, this mom called to thank us for all we have done and to tell us that her marriage is on the right track! While still struggling, they are both feeling much better about everything. She said that Dragonfly events brought the family much closer, and really gave her and her husband the opportunity to focus on eachother and their family, if even for a litle while.

"You saved my family." 

Wow...

Thank you to our volunteers, donors, sponsors, etc... YOU helped us save a family.

Thanks to Midland Atlantic, we have a space to TEMPORARILY store our furniture until new space can be found. We also are going to store our toys, care package items and other hospital/patient gifts so that we can have access to them.

The Landing will be closed starting next week until we can find new space. Hopefully, something will solidify quickly.

Again, we are looking for 2,000 sq. ft. with a private entrance, preferably in the West Chester, Liberty Township, Mason area (to serve both Cincinnati and Dayton Children's Hospital).

If you have any leads, please contact us at r.davidson@beAdragonfly.org.

Thanks for your help!

One of our Dragonfly mom's posted this on our private FB page about the situation she and her family has to face (reprinted with permission):

"I guess I'll apologize in advance but in reality I'm not sorry... This is by far the most hateful post but it is what it is...

You know I never imagined my life like this. Depending on a nurse, Nina or my dad to be with my son so I can leave the house stinks. I never imagined the roller coaster of emotions. I always thought that when I needed people they would be there... Isn't that a joke... People were there in the beginning but they are all gone (with a few exceptions). People who are my "friends" are off doing there own thing... I know people have their own lives but they call themselves my friends... It actually makes me laugh... I have no friends. My sister always told me that you don't ever truly have friends. You have people who say they are but they aren't. Now I believe her. I put time into people who are basically a waste....

I'm am making some life altering decisions.... How would it feel if you were to lose your home, your car and your pride. What you have worked your entire life for...gone... People say, "go back to work.". Are you going to sit with my son while he spends months in the hospital? I didn't think so... People emailed me asking where they could put donations..so I set up an account. Ha...that was a waste of time. I'm so pissed right now. While my children and I are losing everything, life goes on. It sucks.

People say god doesn't give you more than you can handle... That's a lie...welcome to my world. A world where most wouldn't have lasted this long.... People say, I'll pray for you.. Ask god where i can get some serious advice or a money tree...either will do...

Some people have no idea. They think that because they have a tiny problem that their life is over.... Again, I laugh... Try watching your kid suffer and continuously worrying about EVERYTHING. Try keeping a daily log because your child has 15 doctors and countless appointments. Try spending 300 dollars a month in gas because you drive to the hospital three times a week... Im not complaining I'm just saying welcome to my world. To be honest there are people who have it worse. I know a little girl fighting osteosarcoma and fighting for her life on a daily basis... Welcome to OUR world... A world of worry and turmoil...

I know this was harsh but I needed to say it. I'm tired of holding back and quite honestly I've shown you every part of my life. Why hold back now?..."

We have 22 days before we have to relocate our patient/family space (we call it "The Landing"). Please let us know if you have any connections to someone who would like to donate a building or space to TDF (we would pay utilities). We are looking for 1,500+ sq. feet with its own entry and parking. We hope to find a space in the West Chester, Liberty Township area, so that it is convenient for patients/families of Cinci Children's Hospital and Dayton Children's (planning ahead).

We may have an option in the Kenwood area, but we are waiting on details and more information.

Please contact us at 513/494-6474 if you have any leads or connections.

Thanks!

Michelle Johnson, Corporate Communications Project Specialist from Oriental Trading Company had this to say about our redesigned website:

"Congratulations! I can see the hard work has paid off as it really is a GREAT site. Truly, one of the best non-profit sites I've seen. Kudos to you and your team — it is very evident the Dragonfly Foundation is doing remarkable things and definitely going places!"

I'm in my office doing a little happy dance!!!!

Read this: "Hi Ria! I wanted to let you know I made a dragonfly necklace; I am selling it in my etsy shop for $50, and donating that to you guys when it sells. I hope to be able to do this from time to time to support TDF. Here's a link:

https://www.etsy.com/listing/104190236/dragonfly-soldered-glass-pendant

DRAGONFLY Soldered glass pendant necklace: Rectangle, 1" x 3", Dragonfly photo/Take a Breath

Anyway I know were far form Cinci these days but you're all still near and dear to out hearts! Any little bit I can do I know you'll put to good use and that makes me happy [:)]

Take care,

Mary Ann

First Financial Pictoria in Springdale collected money from its employees to give to The Dragonfly Foundation! They donated to our organization in exchange for wearing jeans on Fridays during June. Excited to go meet the employees tomorrow! Thank you!!!!!!!

Hi Ria, just nominated the DF for The Cincy Museum Difference Maker Awards. I just wanted you to know how much you have touched the community and the kids you help. You and Christine are AMAZING. This is what I wrote: "I nominated Ria Davidson from The Dragonfly Foundation last year for all that they do for the kids and young adults with cancer and blood disorders at Children's Hospital. Ria & her co-founder Christine Neitzke continue to grow this wonderful organization and now they have an amazing group of volunteers who diligently work toward making these kids smile. They provide support to families and wonderful gifts (DVDs, games, books, toys) to the children that are suffering through so much. They also work to bring the kids to special events such as Red's Games, and other entertainment venues for families. They even get famous people to meet and greet the kids. All that they do is to bring joy to the kids and families. Christine & Ria are two amazing women and now they have channeled their energy and have created an ever growing organization filled with some of the most dedicated volunteers you will find. I hope you will visit their new website to read even more about what they do: http://thedragonflyfoundation.org/Home. On a personal side, one of my best friend's daughters, Maya Collins, was diagnosed with Acute Myeloid Leukemia in April of 2012 and The Dragonfly Foundation has helped her and her family countless times. Their support in the face of this horrific disease has been a beacon of hope for the family."

Home - The Dragonfly Foundation

thedragonflyfoundation.org

Local independent beauty consultants have partnered with The Dragonfly Foundation to raise money to create gift bags with Mary Kay products for cancer/blood disease patients and their caregivers. The Reds are offering discounted tickets for you to come join in the excitement of one of Cincinnati's favorite past-times with your friends, family, and coworkers while raising money to support a great cause! Your ticket purchase will be a charitable purchase while being tax deductible.

To purchase tickets, please click here!

If you would like to order more than 10 tickets, contact Ashley Wagner 513-765-7452.

Our FABULOUS new Lamar Advertisting Billboard!!!!

We have to relocate The Landing.

As disappointing as this is, we knew it was a possibility going in (location, location, location, right?!). We originally accepted a short-term lease because we just thought the space was going to be used as toy storage. It wasn't until we moved in and actually saw how functional it could be for our families -- and us -- that we decided to go the direction we did.

So here we are, 25 days from having to move out, trying to find a new location that will help take us to the next level. We would like to keep our location near the West Chester, Mason areas so that we can serve both Dayton and Cincinnati Children's Hospital. We currently use every square inch and then some of 1,300 sq. ft., so a bit more would be wonderful. To learn more about how we use our current space, please click here.

If you know of anyone who would consider donating space to TDF, please contact me at 513-494-6474.

Thanks,

Ria

We received this wonderful letter from a Dragonfly mom about our patient/family space ("The Landing"):

Hello,
My name is A.K., my son, M (age 10), is undergoing treatment for his second lymphoma and is also about to undergo his third bone marrow transplant for an immune deficiency he has.  This lymphoma treatment was much more difficult for him the second time around, some if it had to do with his age, he is now 10 years old and before he was 3 years old, but most of it is the treatment.  During his treatment, he is unable to go out in public and have fun. So no zoo, museum, etc.  because the risk of infection is too great.  He was, however, able to meet a friend at The Landing and play during his 4 hour day pass from the hospital.  It was amazing.  He had so much fun, he's been there 3 times now and frequently begs to go back.  Our 3 year old thoroughly enjoyed it too.  It was so nice to see them smile and so important for both of them to let go and forget medical stuff for a while.  Our family cannot thank you enough for giving our son a safe, fun place to go where he can relax and do normal kid things.  It may seem so small to others but it's huge to us and I know all of the other Dragonfly families feel the same way.  Of course Myles can come home on his passes too, but that gets boring after a while, and I'm beyond grateful he has a place he can go that he actually looks forward to. Thank you for making this all possible, thank you from the bottom of our hearts.

Sincerely, AK

This is video from when Nixon Photography gave 2 of our Dragonflies tickets to the November Justin Bieber Concert. (Please note that these girls did not have siblings. It was much easier to give away 1 adult/1 child ticket knowing that there wouldn't be a disappointed sibling who couldn't attend the show.)

http://nixonphotography.com/blog/?p=386

Watch the video and read her full blog post! So cute!!!

Message from a supporter:

"At the movies and my kids just yelled out "Dragonfly!!!" They saw the Peoples First Bank advertisement with the Dragonfly logo at the bottom!"

Thanks, Peoples First Savings Bank (in Mason & Morrow), for continuing to include us in your advertising program!!!! <3

A month ago, we were contacted by the sister of a nurse at Cincinnati Children's Cancer & Blood Diseases Institute. Michelle, from Nixon Photography, wanted to give The Dragonfly Foundation 4 tickets to give to 2 Dragonfly girls and their caregivers. Normally, we would hate to accept 2 tickets (or even a set of 2) because we would worry about excluding siblings (that is SOOOO not our thing!), but this time, we knew 2 girls who DID NOT have siblings and who are absolute BIEBER-FANATICS! 

On Monday, Michelle held a photo shoot at her studio and surprised the girls and their parents. What a great day!!!!

To read her blog and see more of Michelle's beautiful pictures, please click here.

We connect patients, families... [We aren't bound by HIPAA (privacy regulations).]

This weekend, we had the opportunity to connect two of our boys (a 20-year-old and a 26-year-old) and arrange for them to attend a Reds game. While the 26-year old patient was willing to go alone, he didn't have to because we knew another Dragonfly patient to call -- someone who traveled a similar treatment journey and who shared a love of baseball.

This is the email I received from the original patient:

Thank you, Cincinnati Bell and CBTS for helping make so much of what we do possible.

We have lost 12 now... Nurses, doctors, child life personnel deal with this every day. It's a reality of cancer/blood disease, for any disease for which there is no cure. #%$*.

Still, we are always amazed by contact from the families. In 10 out of 12 cases, mothers notified us within 2-24 hours of their child's passing... Nine mothers called and one emailed us -- a non-profit -- with words of deep gratitude.

For caring...

Here's the latest note:

"My son passed away. Thank you all for everything, you made him so happy. We were so blessed to have Dragonfly you made his world with the gifts he received. Thank you."

A note from one of our Dragonfly mom's:

Thank You dragonfly Foundation!!! Without you, this magical day would never have happened!!! :)

***

Apparently, they all got along famously!!! I love their smiley faces!

Thank you, Cincinnati Zoo, for making this possible for our kiddies!

We would like to thank the Venue Magazine and their sponsors: Merrill Lynch Wealth Management, Western & Southern Financial Group, Thompson Hine, Dean Miuccio Productions and James Free Jewelers for honoring Christine Neitzke & Ria Davidson among its recipients of the 2012 Civic Leadership Award.

One of our Dragonfly patients sent this email to us to send to Cincinnati Bell/CBTS:

Dear CBTS and The Dragonfly Foundation,

Thank you so very much for the great opportunity I had this week. I will never forgetplaying in the first ever "Dragonfly Day" at Great American Ballpark. Not only was this an incredible experience for patients who continue to go through testing to ensure that there is no evidence of disease, but it was also a time to just forget the worries and troubles of the current stages of treatment, for those that are still enduring chemotherapy, radiation and other horrible procedures.

When talking with fellow patients out on the field that Monday afternoon, we really felt the comfort and support we have from CBTS. It was an honor to play baseball on the field, but the best part of being there was seeing all of the little kids affected by treatment for cancer or a blood disease. There aren’t many chances to smile and laugh after you hear “You have cancer,’ and the gloom and pain stays with you long after treatment is over, until you hit the “magic” 5-year mark. (Testing and scans are a constant concern.)

But on this day, the kids, who ranged in age from 2-22 enjoyed the day in every possible way: from carelessly running throughout the outfield while watching themselves on the "big-screen" to asking excitedly “When is it my turn again?” Everyone who attended, players and parents alike, truly loves and thanks you for this once-in-a-lifetime opportunity.

Thank you for your support of The Dragonfly Foundation. This organization provides comfort and joy every day. I am grateful for all that you do to support them. It iswonderful that patients like myself can forget for a moment about all that we have had to go through.

Just seeing the smiles on the kids’ and parents faces was truly enough to make anyone teary eyed!

Thanks once again for everything that you do,

CB

Got calls today from 2 Dragonfly moms who both needed support. One said "I just need to vent and hear someone breathe on the other end of the line."

Everyone needs a hand to hold. Honored and amazed that we are their go-to people.