I had my suspicions weeks leading up to her diagnosis and even used the word “leukemia” at a few various sick visits at her pediatrician’s office and to my husband, Andy. A limp that only lasted a day—my first thought, leukemia!
But my worries were easily talked down and rationalized by other very valid explanations—she’s a clumsy toddler, it was wintertime, sickness season, her labs were fine. After all, I was probably just being extra paranoid given my line of work as a pediatric leukemia/lymphoma nurse. I think a lot of people in medical careers can relate to.

I knew that day at urgent care as soon as the X-ray tech walked us out of the room and said, “good luck, feel better,” with a deep worry behind her eyes, that something was not right. I really knew it was serious after a long wait for the results. The urgent care wasn’t busy at all, were they are on the phone consulting with another doctor? The doctor looked sickly pale when she walked in like Isla did that day, and she said, “where did you say you worked at the hospital?” When I replied, oncology, I thought she was going to throw up right there on the floor, she told me to sit down while she pulled up the X-ray to show me Isla’s severely enlarged liver and spleen. My mind was spinning, and I just kept thinking—my god I was right, I wasn’t being paranoid—there’s no way, please don’t say it, don’t say that you think it’s cancer, maybe it is an infection…I heard the words “I think it’s very likely to be cancer” and nothing else after.

The past 19 months have been hard, particularly the first 12 months of chemo—so incredibly hard, and it’s not often that I let myself think about the depth of that. Busy just trying to get through treatments, admissions at the hospital, hours spent in clinic on top of work, and life. But, as hard as it’s been, it’s also been SO amazing to watch Isla grow like any toddler does in a year’s time. She’s grown so much, is the funniest person I know and became the best big sister in February 2020. Her personality has blossomed and she’s always learning new things, and that has been such a blessing to be able to watch. She is incredibly tolerant of all the things that must be done to treat her leukemia and is mature beyond her young three years. She LOVES seeing her doctors and nurses. I wish everyone could witness resilience like hers. She handles her treatments with such a happy spirit and positivity really amazes me. Isla is so very special, and I’m not sure I would have REALLY appreciated that the way I do now. If all goes well and as planned, she will be finished with chemo in June 2021—a few days after her 4th birthday.

While you are enduring chemo with your child, it is hard to find time or energy for the fun stuff. Outings seem overwhelming, navigating the balance between being immunocompromised and living life to the fullest. The Cincinnati area is so lucky to have The Dragonfly Foundation. They take that stress away for families battling childhood cancers. With planned group activities and individual family activities, you feel like you are surrounded by people who understand without having to explain your situation, and you forget for a moment what day to day life is like. You don’t even realize how much your family needs that until you experience it. They also deliver practical help to families struggling with resources— providing them with basic needs, decreasing some stress so they can focus on their child. Obviously, the medical piece of cancer treatment is top priority, but The Dragonfly Foundation helps to fill the gap of emotional wellbeing for patients and families. They have provided our family with memories that will last our lifetime: Isla dancing the night away at the Holiday party, her face BEAMING with joy watching The Lion King musical, a much-needed date night for mom and dad at Tony’s of Cincinnati, and so much more.

The post ISLA’S STORY appeared first on Dragonfly Headquarters.

Bianca was diagnosed on January 13th of 2016 and completed treatment on December 1st of 2016. We were so blessed that the minute we stepped foot in Cincinnati, things continued in a positive direction. While Bianca had a very aggressive treatment plan that spanned the entire year, she was blessed with an amazing amount of energy that allowed her to go through this process with a smile on her face most days. We would joke that cancer treatment brought her energy levels down to that of a normal two-year-old! You could always find her dancing or playing with a nurse or doctor, which brought smiles to everyone’s face.

A wonderful friend of ours started the hashtag #BabyBStrong. We were blessed to have so many friends and family supporting Bianca and our family through this journey!

Although most of her story is light and happy through what we all know is a not so fun journey, we still had our hard times. For us, one of the biggest bright spots was The Dragonfly Foundation! One of the hardest parts of being the parent of a cancer patient is trying to let them be a kid without all of the limitations. Dragonfly made this part so easy for us with their many events and that notorious blue bag we received on our first day at Cincinnati Children’s! We especially loved being able to sit in the Pilot House at the Reds Game! There were so many great events from amusement park days, concerts, and Christmas parties! The Dragonfly Foundation was truly a blessing for us and like another family. Today we still refer to all of our Dragonfly friends as our “Dragonfly Family”!

Bianca is almost in survivorship as we are almost at her five-year mark from treatment. A lot has changed for her and our family! We have now moved halfway across the world in Dubai, but we keep in contact with some of our Dragonfly family! Our favorite Dragonfly Family, Zak and Courtney, always get a visit from us when we are back stateside, and we always try to share Bianca’s latest and greatest adventures!

Our little fighter, which everyone used to call BabyB, is now a bubbly thriving seven-year-old! She still has tremendous amounts of energy, and she uses that energy in her Jiu-Jitsu and her modeling career here in Dubai! She wouldn’t be where she is today if it wasn’t for her medical team at Cincinnati Children’s or for all the wonderful love we received and continue to receive from The Dragonfly Foundation! We are eternally grateful to you all for helping #BabyBStrong.

The post BIANCA’S STORY appeared first on Dragonfly Headquarters.

My sweet Liam was diagnosed with SCID- severe combined immune deficiency. A rare and incurable auto immune deficiency. I had to go home, pack our bags, and drive 3 hours to Ann & Robert H. Lurie Children’s Hospital of Chicago, thinking we’d be there for a couple of days, but it ended up being 9 months.

During those 9 months Liam was prepped for a bone marrow transplant. There’s no cure for scid but the bone marrow transplant can set you up for a full healthy life. Liam’s prep was lumbar punctures, imaging, central line placements (single and a double,) chemotherapy, steroids, and much more.

Liam was gtube fed shortly after his transplant that he received on September 26^th, 2014 at just two months old. He’s had over 500 blood and platelet transfusions between then and now. Liam has come so far. He’s had a lot of major surgeries and has a lot of major health issues post chemotherapy and transplant.

8 years later, Liam is still on several medications, is gtube fed and is in the hospital weekly for IVIG (immunoglobulin) transfusions/infusions to help his immune system as it’s still showing signs of suppression.

Dragonfly has been absolutely amazing and has welcomed us with the most open of arms- they’ve been there when we had last minute unplanned emergencies, when we needed an ear to listen and a friend to lean on, had gift cards and coffee when I was desperate for a break.

We choose The Dragonfly Foundation over and over again. They’ve given Liam opportunities like seeing his favorite football team play in games, meet the teams, and much much more!

SCID and this treatment plan and all he’s endured has been a lot on Liam. His mental health took a turn about 5 years in and he has had suicidal thoughts. It’s been heartbreaking. Liam is so amazing and strong and knows that one day we will see the light at the end of this journey.

Liam is ready to be a “normal “ healthy kid. He’s ready to be free from so many things he’s had to deal with since 5 days old.

The post LIAM’S STORY appeared first on Dragonfly Headquarters.

A week passed and this time it was her right arm and she came to me again and said that her arm is sleepy. So I was thinking it was the same thing from the week before so I just let it go for a few days and I started giving her Tylenol and Advil off and on to help with the pain. A few days went pass and it seemed like she wasn’t getting any better and she was saying she was having pain in other places. She stopped playing like she use to and that happy 3 year old started to disappear right before my eyes and then I knew something bad was going on and I had to figure out what it was and fast. So that Monday I started reaching out to her pediatrician and I wasn’t getting an answer and her health was still declining, she stopped eating and using the bathroom on her self. It even got to the point where I would have to get her dressed the night before because it hurt really bad when she tried to lift that right arm. I couldn’t keep seeing her in pain so Dad took her to the hospital and they ran a few test and they were thinking that she had ostomilities of the shoulder so they decided to keep her for two days will some IV antibiotics. That Saturday evening we got to go home she played for a little while and we to bed. When everybody woke up the next morning Miyonna stayed in the bed and didn’t move and she was really hot to the touch and she was very weak a few hours passed and she was still like that so I called the pediatrician and they told me to take her temp and it was 100.3 they told me to take her to hospital right away. Once we arrived her temp jumped up to 100.8 so they admitted us.

The next morning the doctors did their rounds and told me they don’t know what caused the fever but they were going to run some test to see what it could be. Everyday for the next four days it was a different test and all those came back negative so they informed me that they would do a biopsy of her right arm and if that was negative we could probably go home the next day. That Saturday morning on September 19th they were still waiting on the results, about noon one doctor returned to our room and told me they needed to speak to me about her results alone. I knew it wasn’t going to be good so as I’m walking with doctor all these thoughts were going threw my head as what it could be, once we get to the room 3 other doctors were already waiting on me and they told me to have a seat they wanted to go over her results. I called her dad because of Covid we couldn’t have any guests. While on the phone the doctor said her results came back and she has LEUKEMIA…………………… that word went in one year and out the other and before you knew it I busted out in tears all I was thinking was my baby, they didn’t know which one she had at that time. They didn’t know which one at that time but they let me know that the oncology team was on their way to talk to me. After we spoke they informed me that we’ll have to go to the oncology floor and we’ll have to stay in the hospital for almost a month to receive treatment and they let me know that she has ACUTE LYMPHOBLASTIC LEUKEMIA.

Once we got to our room our social worker came to our room with some very beautiful gifts for myself and Miyonna from the Dragonfly Foundation she left me with some information about the foundation and who to reach out to. I called and they told me all the wonderful things that the foundation provided for the families and they reminded me that we weren’t alone. The few months that followed Dragonfly really helped out a lot with lifting myself and my families sprit for the holiday since I quit my job to care for Miyonna and I wasn’t able to  give gifts to my children. They helped lift that load and so many other things. Any event that was going on in they city we were able to sign up for and attend. They also offered events for the parents for a special night on the town when we couldn’t afford it. Zak is very helpful and always there when needed. I’m forever thankful for the Dragonfly foundation and what they did for my family. We love Dragonfly and so happy to be apart of the family.

The post MIYONNA’S STORY appeared first on Dragonfly Headquarters.

Tannar, our eight-year-old, has always been an active, fun-loving boy who is a little rough and tumble. Getting bruises was no new thing for either of our boys! However, after soccer season last fall, we discovered that Tannar was still bruising in the most odd places that we just couldn’t explain- the backs of his arms, thighs, the top of his shoulder, his calves, etc. These bruises were coming with great frequency, and they formed QUICKLY!

After speaking with the school, it was still a mystery as to why Tannar would have these bruises. So, I called his pediatrician, figuring we were probably looking at an iron deficiency or something else that he was most likely “low” on. That was on October 27, 2022.

The next day we went to the pediatrician for labs and a check-up. That evening we got a call from someone at Cincinnati Children’s telling us we needed to come in and be seen in the ER. After a couple of weeks of staying at Children’s for testing and procedures, we were told Tannar had Juvenile myelomonocytic leukemia (JMML). JMML is a rare leukemia that affects young children.

TREATMENT AND A CURE

We were told by his oncologist that the only way to cure this type of leukemia was with a bone marrow transplant. We were so relieved to hear that what Tannar had was treatable and even possibly curable. Tannar was started on chemotherapy that would prepare his body for the transplant that we knew would be coming, and we prayed and prayed hard! Tannar was a champ, doing everything the doctors ordered and recommended with so much grace!

Throughout his whole process, Tannar has been amazing! He has taken everything in stride. The meds, the hospital stays, the multitude of weekly appointments, EVERYTHING. The hardest thing for him is that he has not been able to be with his friends, go swimming, and play sports.

Tannar’s body has responded amazingly well to the treatments. He has had a few (as to be expected)  yucky days, and we’ve had some ups and downs emotionally. His brother, Tayton, has helped keep Tannar’s life as normal as possible, being both protective and teasing, allowing Tannar to keep a friend through this all.

NEXT STEPS

The next step for Tannar is a bone marrow transplant. A perfectly matched donor has been found, and we feel so blessed for that! We are in the hospital now, preparing for his bone marrow transplant later this month.

For at least a year after his transplant, Tannar will have many appointments at Children’s. He knows that the transplant isn’t the immediate end of all of this; however, he is still so excited for it to happen. He has made the request that as soon as his CVC line is out and the doctors say it’s okay, he wants to go swimming! He absolutely will be swimming!! It’s amazing to see how resilient and innocent he has remained through this process, even though he has had to “grow up” quickly in so many regards.

A HUGE THANK YOU!

On our first full day at the hospital after diagnosis, on the Hematology/Oncology floor, with my husband and I feeling shocked, helpless, overwhelmed, and quite honestly terrified, a lady walked in with a couple of bags and a blanket. Tannar was sitting on his bed, playing with a video game, after being told he was going to be in the hospital for a long time. The first thing she did was speak to Tannar and say, “Some friends sent some things they wanted me to give to you.” Those friends were the people from Dragonfly! Inside of the bags, which Tannar really enjoyed opening, were toys, a tablet, a water bottle, a fuzzy blanket (which he still uses every trip to the hospital), and other amazing things! There was also a bag of items we, as parents, might and did need while we stayed at the hospital. However, the note in the bag just gave me so much more hope. Essentially it was a “You got this, and we’ve got you.” kind of statement. Dragonfly has had us. Tannar received more welcome gifts after he filled out a quick survey of the things he liked, gifts at Christmas time while in the hospital, and an Amazon gift card, which he used to buy something for his brother.

I know that Dragonfly offers so much more in terms of materialistic items, but the hope and kindness they offer have meant so much to our family. Thank you!!

The post TANNAR’S JOURNEY appeared first on Dragonfly Headquarters.