From Diapers to College Applications . . .the Journey with a Pediatric Specialist

by guest blogger, Ginger Dosedel, mother of 2010 Family Advocacy Day All-Star, Michael Dosedel

When my son was diagnosed with cancer at age three, it was frightening and overwhelming. We were sent to a pediatric specialist focusing on hematology/oncology. At the time, I had not fully appreciated pediatric specialists. I have come to have a much more profound appreciation for the specialists and specialties that deal specifically with children’s medical needs. 

Through the journey there were a plethora of suggestions from well-meaning friends and relatives. Most of these suggestions were homeopathic or alternative medical solutions. All of which are approved for adults. The problem with applying these methods to children is that they are not little adults--they are children.  As such, they need different approaches and care. For instance, if you irradiate an adult’s femur there are very few side effects. However, radiation affects children differently. My son has gone through over 30 surgeries and as a result of his radiation treatments, deals with the life-altering effects on his body. Shark cartilage can be helpful for adults who get cancer because it stops the growth of nerves. This same alternative is deadly in children whose bodies are still growing and require the nervous system to keep up! Much thought must go into the treatment of children simply because their bodies are perpetually changing. Their treatment must accommodate these changes.

Pediatric specialists have been following my son since his infancy. They have followed him through his early childhood years and school age years and now as he transforms from a young man into the young adult he will become. They have followed him from diapers to college applications. Things that are important in his treatment have been as extreme and diverse as the stages of his life. Part of their battle has been to educate me on what is important in his health care at each stage and to make sure that, as Mike grew up and matured, he understood his disease, its side effects, his health care options and how to advocate for himself. This advocacy has been in many areas including the effects of his medical care on his education.  Mike has grown into a young adult who can talk with his physicians and take part in his health care due to this process of growth fostered by his medical staff. There’s more involved in working with children than just treating a disease --pediatric physicians have a formative impact on their patients as they grow and mature.

Providers of care to children require expert empathy and understanding of family dynamics. When you enter into pediatric care you have to treat the entire family, not just the patient. Parents, siblings, even grandparents are deeply involved in a child’s care and treatment outcome. There are so many emotions involved when your child is ill and the tiniest thing can have a profound effect on a tough situation. Pediatric specialists and children’s hospitals are wonderfully aware of and sensitive to this dynamic. The children’s hospital network works, in a comprehensive manner, to make the entire family comfortable and engaged. There is a coordinated network of physicians, specialties and staff who work to treat the entire patient and family. From pediatric specialists to considerate nurses to child life staff to volunteers, everything that can be done to coordinate care of mind, body and soul is attended to-- no detail is left unattended. The entire children’s hospital is geared to protect the sanctity of childhood and family while promoting the health of its precious charges!

Mike’s heroes are largely comprised of people he’s worked with in the medical field. I couldn’t ask for better role models for my child. People who understand the importance of providing medical care to those who can’t fight for themselves and whose disease or illness is further complicated by the continuing changes should be emulated. I hope that my son, having been surrounded by this loving, empathetic, concerned, broad thinking and caring environment his whole life, grows up to have these personality traits himself. 

Comments

[Aimee Ossman]

Of course I meant "treatments for adults don't always work for kids."

[Aimee Ossman]

Your blog brings home the fact that children have unique health care needs and treatments for adults always work for kids. Thank you for sharing your story.