Transcript of speech from Dragonfly mom/son

On January 25th, Dragonfly held an intimate reception at Tony’s Steaks & Seafood in Cincinnati. The event was sponsored by Tony’s and attended by Dragonfly supporters, board members and staff. The highlight of the event was a Dragonfly Family who spoke about how The Dragonfly Foundation impacted their treatment and recovery experience. Jordan, a Dragonfly patient, and his mom Tess took turns openly sharing their perspectives and memories. Following is a transcript of their presentation:

“Hi – my name is Jordan and I am here today with my parents, Jay and Tess – my mom and I are going to do this together as we have two different perspectives on The Dragonfly Foundation! October 8, 2013 when I was diagnosed with APML, Acute Promyelocytic Leukemia it changed all of our lives…I was 5 weeks into my senior year of high school at St. X and I didn’t make it back…”

“Jordan had some odd bruising and his gums were bleeding… this led to a visit to the pediatrician Tuesday at 5 pm, evening labs, and a leukemia diagnosis by 9 pm. He was admitted to ICU by 930 at Children’s main campus. They “thought” he had APML, the rarest yet one of the more curable types of Leukemia, but they couldn’t do the test to determine which type he had without risking him bleeding out due to low platelets and blood counts. At midnight, he started bleeding on his brain due to his low blood counts.

The first night in ICU was the scariest of our lives, we were thrown directly into this world of cancer and WOW…it is one we wish none of you ever experience. We were hoping the docs were right and the early treatment would better his chances of survival. Jordan spent a week in ICU, four months in isolation on the oncology floor and anther 5 weeks going to the hospital daily for IV chemo. He spent the next 3 months in and out of the hospital for various complications.  Finally…in mid-June of 2014 he was home and we just had to visit the hospital several times/week for blood work/follow-ups and, thankfully, most chemo and other treatments were done mainly at home!

Since diagnosis, Jordan has had 48 blood transfusions, spinal taps sometimes daily to remove the pressure on his brain as a side effect of the chemo, and hundreds of doses of chemo – every single day for over 22 months.  The things a child with cancer endures are unimaginable to someone who hasn’t witnessed it first hand.  I am still amazed every day at how Jordan handles all these hurdles life has thrown him.

It was during our first day in ICU that our social worker stopped in and dropped off Dragonfly’s Blue Bag, their New Diagnosis Care Bag. It had everything, not just a toothbrush and toothpaste. When I got the nerve to talk to the mom next door to us and she said WRITE EVERYTHING down, you will never remember…the nurse said go to the blue bag there is a notepad, pen and binder to organize things. When the cards started rolling in and I decided an ICU room was far too dreary…let’s cheer this place up and tape them to the walls…yup, in the blue bag was tape.

After that first chemo when he started getting sick almost immediately and we needed to clean everyone up…I found laundry detergent and dryer sheets were in the blue bag. I finally decided to take two minutes and go through the bag…soft tissues and toilet paper (a lifesaver, you have no idea), nightlight for when we moved to the regular oncology floor and there were less machines lighting up the room at night, chapstick for Jordan’s lips when they started peeling from chemo, a dry erase board so his sister could leave him notes when she visited – they seemed to think of everything!

While the cancer club was one I didn’t want to join, I decided immediately that the Dragonfly was one club we officially wanted to be a part of. How did they know…everything we would need??? I didn’t know then but I was so very grateful!”

“When I was first told I had leukemia  the doctors said I would be in the hospital for a while, so I initially thought that meant I would miss a day or 2 of school.  I had no idea that meant months in the hospital!!  The Dragonfly Foundation was a lifesaver to me…half way into my first extended stay in the hospital I started to feel a bit better and the boredom set in. It wasn’t long after that I came back to my room after doing physical therapy there was a gift from The Dragonfly Foundation, a Nerf basketball hoop that I could use in my hospital room. This was perfect and it couldn’t have came at a better time. This hoop helped me to have some fun and it distracted me from the awful things my body was going through. The Dragonfly Foundation also delivered gift cards at the most needed moments during my stay. It was so fun to shop online and decide what to buy, it was a great distraction!

Things like this is how The Dragonfly Foundation helps patients like me get through the tough times in the hospital.

They also do a spectacular job at providing comfort and joy to patients that are out of the hospital.The Dragonfly Foundation provides tickets to things like Concerts, professional sports games, the circus and many other events to Dragonfly families. All of these events are awesome and there are some to suit the many different interests people have. These events are a great source of enjoyment for everyone involved and help get our minds of off anything we may be worrying about. It is so refreshing to let us have some fun in safe environments! I personally am a big music fan and I have been able to go to some concerts that I never would have attended without The Dragonfly Foundation.  I have made some memories I will not forget.

When I was getting out of the hospital (for what we thought was good, turned out to not be) they let me celebrate with my family in a Suite at the Cyclones game…I still had next to no immune system from the chemo and it was great to be able to go “OUT” without risking sickness or infection thanks to the Dragonfly Suite.  I have also been able to do several events with the Red’s including a special Suite at Redsfest, where we were able to hang out with the players.”

“As a parent of a Dragonfly the SMILES that these events bring to our kids…they are simply priceless! The blue bag was initially my life saver…but now, 2.5 years into this journey Dragonfly has become our family. Another Dragonfly mom recently wrote this and I just can’t sum it up any better…and I’ve spent a long time thinking about this:
“The Dragonfly Foundation was formed to raise the spirits of very sick children daily, both in the hospital and at home. Their unexpected gifts bring joy when it is so difficult to come by to the children and families going through a horrific experience. However unknowingly The Dragonfly Foundation created a family of parents who are just as lost as their children. Through our connections we have done amazing things to help and support a family or child without personally knowing them. We all speak daily online and check up on our Dragonflies.”

Today if you look at Jordan you would think – he doesn’t even look like he has cancer but he is dealing daily with the aftermath of cancer…permanent heart damage, seizures which leave him unable to drive, and liver issues from the chemo just to name a few. Knowing that our Dragonfly family is just a click away to lean on…and that they “get it”, well that is truly a lifesaver for us! At our house Dragonfly symbolizes love and understanding…from not only Ria and Christine, the workers and volunteers but the entire Dragonfly family they have created. I know that if we need help, this is the place!”

“The impact that The Dragonfly foundation has had on me has been so great that I have decided to use my time to give back to the foundation. I have personally given speeches like this one and volunteered to help at the Landing and to work at a variety of fundraising events including last years gala. I cannot begin to thank The Dragonfly Foundation enough for all of the amazing things that they do and I hope that you all see all of the great things they are doing in our community and continue to support this cause. I speak for all of us Dragonfly kids when I say Thank you, from the bottom of our hearts!”