The day life changed

Cameron was pretty much born with a soccer ball next to his feet.  From the time he could walk he was dribbling a ball and wearing soccer shoes and uniforms representing his daddy's favorite British teams.  He inherited his daddy's love of soccer as well as all sports.  Dribbling in the yard was his favorite past-time.  Before he was old enough to play on youth teams, he was the ball boy for the high school soccer team that his dad coached. Then he played pee-wee soccer as well as organized soccer every season with his dad coaching and supporting him on the sidelines for many years.  He loved to run and play soccer, it was his passion.


All of that changed when he turned 9 and began experiencing pain in his leg when he ran.  He also started complaining that his leg was tingling at night and he would toss and turn never getting a restful sleep.  I thought he had just pulled a muscle or had bruised his bone.  He started to have a limp and complain more.  I continued to hope and pray that his leg would return to normal soon, but it didn't.  Ironically, a child's father on Cameron's soccer team was an orthopedic doctor.  He saw Cameron complaining about his leg during and after the games and noticed his limping.  We discussed how Cam's limping had become more pronounced.   One Saturday he offered his office to us.  He x-rayed Cameron and did an exam on his legs/hips.  I was still thinking this would only turn out to be a pulled muscle, and I actually went off with my younger son while my husband took care of the X-rays.  This couldn't be a big deal, after all he was still running around and able to play an entire soccer game.  Boy was I wrong.....


The phone call that I received from my husband that afternoon was one of the most devastating moments in my life.  When I answered the phone, his voice was different.  My husband is a calm individual who is not phased by many things.  I could hear it in his voice that he was upset.  When I asked how the appointment went he said simply...."Not good."  I remember screaming and yelling demanding to know what that meant.  He said Cameron has Leg-Calve-Perthes disease and it is pretty serious.  He continued to explain that he has it bilaterally (which means he has it in both hips).  He went on to say that the X-rays showed that his ball joints were deteriorating and that this was causing him to experience pain and limp. He explained that at some point the blood supply to Cameron's hips had been cut off and that this had caused the bone to die and both of his femoral head (ball joints) to become misshaped, jagged and not "round" like they should be.


At that point, I was hysterical. The range of emotions I experienced were exhausting.  I cried, sobbed, yelled, got myself together, then would start all over again.  I was scared...so scared, confused and upset for my son and what this diagnosis would mean.  My husband was scared too.  I could tell.  He fell silent on the other end of the phone and there was no comforting me.  He was scared for Cam too. Would our son  ever be normal again? How could this be? Why Cameron...why us?


The doctor made a phone call and got us in to see a pediatric orthopedic specialist at Georgetown Hospital within a few days.  I  will always be so grateful that he was able to do this so quickly.  I don't think I could have stood waiting any longer.  We spent the entire weekend googling the internet about Perthes and what we read was terrifying.  There were so many varying degrees of the disease and we had no clue what category or stage that Cameron's hips were in.  All we knew was that he was older and that the prognosis for an older Perthes child was not as good.  Again, devastating news.  It was so hard to be strong for Cameron when we were so afraid for him and his future. 1 in 1200 children are diagnosed with Perthes, and Cam was unfortunately chosen to fight this battle.


The appointment with Dr. John Delahay went better than expected.  He discussed with us that Perthes would not be life-threatening for Cameron, but it would be life-altering.  He also went in to detail about what the life-altering part would be.  He discussed that he wanted Cameron to be able to be as normal as possible.  He would allow Cameron to play sports as long as the femoral head (ball joints) stay contained in the acetabulum and his range of motion remained good.    He explained how he would be monitoring this over the next 3years or so until he had entered the final phase (or quiet phase) of Perthes. This would mean X-rays and exams every couple of months for Cameron and constant monitoring.  He would have to "listen" to his body and learn to stop running when it hurt or the pain became unbearable.  If his range of motion got worse, he would have to stop sports for a while and operations may be in his future.  He also explained that a hip replacement for Cameron was almost certainly in his future.  Half of the Perthes cases like Cameron will require new hips in mid-life.  His range of motion looked good,  he was allowing him to continue to be active with his sports, so  I guess you could say we were "some-what" relieved.  Perthes was not Cancer, his condition was not terminal, but it was devastating all the same.  His body's ability to function normally was in serious question.  The questions, "can he be a normal child jumping on a trampoline, running, participating in all the sports and activities he loves so much, were all asked.  And the Dr. just didn't have an answer besides...time will tell.  We would have to wait.  We were nervous and concerned about what might lie ahead for Cameron, and as it turns out, we had reason to be...


It is difficult to blog about this several year battle now.  I so wished I had blogged about his experience when it was happening.  To discuss the pain, depression, and loneliness that he felt while going through this.  To explain that some days it simply hurt him to walk.  To describe the hurt in my husband's eyes to see Cameron cringe in pain and beg to be carried.  To watch Cameron go from a sports participant to a little boy that couldn't walk long distances without aching so badly that he cried.  To have to take a wheel chair for him when we would go somewhere that would require a lot of walking because it was so excruciating for him to walk long distances sometimes.  People would stare at him, as he appeared like a normal child just too lazy to walk.  You can't imagine the reactions we have witnessed as people have stared at my little boy.  We have watched him compete in wrestling matches, giving his all, winning on the mat, but then be too weak to climb the bleachers.  You see, Cameron went  for a year after his initial diagnosis with good range of motion.  His  ball joints stayed contained, but during his fifth grade year that changed. This time his X-ray showed that his ball joint on the left side was starting to protrude a little, and his range of motion was not as good as it should be.  The doctor decided to do a shelf procedure on his left hip.  This is where they perform a  ("acetabuloplasty"), making the acetabulum bigger to accommodate the deformed femoral head).  The took bone from his pelvic and added it to his left acetabulum.  They also performed bilateral adductor tenotomies to give him better range of motion.  This is the surgical release of the tendons from the bone.  His muscles in his pelvic area had become shortened and tight from the constant limping.  These surgeries were successful and acheived what they were suppose to do.  He was confined to a wheel chair for 3 to 4 months and was not allowed to put weight on his hip during this time.  After that, he used crutches, attended many months of physical therapy and hydrotherapy.  All sports stopped and life as he knew it had drastically changed.



Our soccer star had become a spectator on the sidelines and this was a very difficult and depressing point in his young life.  He was no longer running down the field with his friends, but instead he was being pushed in his wheelchair by them.  Still through the trials and struggles he fought and kept fighting.  He worked hard to get stronger and prayed.  During this time he grew real apathy for children with disabilities.  He knew his time in his chair was temporary and gained such compassion for children that would never be able to walk again or leave their wheelchairs.  Cameron has always been a kind child, but he grew even more kind and compassionate.  The adversity made him stronger.  It was a life lesson he will never forget.  



Cameron had a repeat adductor tenotomy just last year.  He went through several more weeks of physical therapy and is now doing remarkably well.  He has grown so strong over the past three years, both physically and mentally.  He has entered the final healing stage on the left side of his hip.  He has resumed all the sports he loves.  Not just soccer, but wrestling, baseball, swimming, just to name a few.  There were times he competed with half a leg, and in pain, but it was worth it to him to play the sports he loves.  This was HIS choice.  He doesn't give up, he is a fighter.  He has more strength and drive than any person I have ever known.  The fact that he has been an all-star baseball player, Maryland State Wrestling Champion, and all-star swimmer all while suffering with Perthes is so amazing to me.  It is a true testament to the fact that you can overcome obstacles when you set your mind to it....and he did.  He is my truly my hero.


It is true that Cameron's passion has always been sports.  For other children, their passion might be horseback riding or just running and jumping.  The point is that Leg-Calve Perthes takes so much away from children. I  hope that by sharing Cam's story, it will let other families struggling with Perthes know that they are not alone in this battle that robs so many children of their childhood.   I don't know what the future will hold for Cameron's hips, or his ability to play sports in the future, but for now I know that he is living with Perthes and considers each day that is pain free a blessing.