Meet Summer, my curly, redheaded girl from Carrollton, Texas. In 2006, when she was only 21 months old, Summer was diagnosed with Acute Myelogenous Leukemia. Summer spent the months prior to her diagnosis singing, dancing, watching the Wiggles, and adoring her newborn sister. Just five weeks earlier, her sister, Claire, was born and our family was all so happy. The world of the Simons family changed fast following Summer’s diagnosis, and since then Summer has spent over 250 nights in the hospital, had multiple surgeries, achieved remission twice, relapsed once, survived a bone marrow transplant, changed from A+ to O+ blood type following the transplant, and she has learned to pronounce names of medications that are difficult for most adults. 

It has not been an easy path for Summer or our family, and it often seems like we have been faced with every challenge associated with leukemia, beginning with extreme mouth and tongue sores. Even two years after transplant, Summer still struggles with challenges associated with her eyes, ears/hearing, hair growth, graft v. host disease, sinuses, kidney’s, and catching up on some of the normal things she missed while in the hospital.  

Since Summer’s diagnosis, our family is proud to have raised over $20,000 towards the fight against leukemia in hope that one day no child, adult, or parent will have to endure the struggles of blood cancers. Many friends have also raised funds in Summer’s honor. Raising funds to help others beat leukemia is almost like therapy for our family.  

My wife and I also noticed early in treatment, that the medical tubes/lines hanging out of her body were a problem and realized, “There has got to be a better way to do this!” These are the central line tubes, or the central venous catheter, which is a surgically implanted catheter that allows medicine, nutrition and blood to be administered without having to always stick needles into veins. For seriously ill children, a central line is a way of life. Literally.  

But as much as the central line helps to keep the needles away, the lines are fragile and the exit point is naturally tender. Then when toddlers move around, the tubes get pulled on, twisted, tangled, caught between arms and legs, fall into the diaper area and become kinked. Kinked and twisted lines soon become broken lines, and broken lines and tender exit points are high risk for infection. 

Summer’s Lifeguard was our family’s solution to finding a better way to manage Summer’s central line challenges. Summer’s Lifeguard/a central line port wrap is a medical garment placed around the chest.  It offers protection starting from the exit point of the catheter, and routes all the  lines around to the back of babies and toddlers, where the lines are safer, out of the way and less likely to break. To learn more you may visit www.summerslifeguard.com. Summer’s Lifeguard is another way our family continues our fight to help children with leukemia and central lines. 

You can follow Summer’s story here:  www.caringbridge.org/visit/summerjean 

Written by:  Brad Simons, Summer’s daddy  
1/22/10