Yesterday, we drove Cameron to Georgetown University Hospital Center for his one year follow-up appointment. That in itself is a huge deal. After Cameron was diagnosed almost four years ago, he had to be seen every 3-4 months for evaluations and X-rays. As a mother it is nerve racking. The range of emotions that I have experienced while visiting that office have been intense. That is because with this disease, you just never know what will be around the next corner. There have been tears, lumps in my throat, anger and yes even smiles at all of these appointments.
Cameron's X-rays yesterday showed that both of his hips had completed entered what is called the "quiet" phase of Perthes. The right side had already entered this phase, but we have been waiting for the left side to enter this last healing stage as well. This process takes a long time. Four years ago when the doctor told us we would have to be patient, and that the process would take a while, I had no idea what that really meant. Many tears shed, nights of agony, surgeries, and years later we understand. Perthes is a nasty disease.
Yesterday's appointment provided us positive news for Cameron. His X-rays showed that the bone in the ball joint of his hips had re-grown completely and was shaped as best as possible. Quite a difference from Cam's initial X-rays in which his ball joints were deteriorated, jagged with bone missing throughout much of his ball joint. Cam's ball joints won't ever be round, but they have both re-grown bone and are egg shaped which the Dr. says was the objective here. The shelf that he added to Cameron's one hip is doing its job. It is helping to keep his ball joint in place since it was protruding a little before the surgery. Cameron's range of motion was good yesterday, which Dr. Delahay said was more important then what his X-rays showed.
X-rays of a Perthes kid's hips almost never look good, but if they are able to move around without pain and with good range of mobility, you have made progress.
The doctor is not restricting Cameron in any sports he might want to play. He only said that some sports with excessive running may be uncomfortable and that Cam would have to deal with it as it came. He also said again, "time will tell." But Cam crossed another milestone in this disease when he started playing soccer this summer and his hips were feeling pretty good. He explains that it feels good to run without pain, something he hasn't been able to do for so long. But even running now, with "so called" healed hips, Cameron has good and bad days in which a couple of Aleve seems to help a lot. When he walks for long periods of time he sometimes aches too. As a mother, this is the hard part, not being able to make the end result even better. When he is playing all the sports he loves, or just walking for long periods, he is sometimes fighting very hard to do so. An example of this stuggle is the fact that he has been competitive swimming since he was four. His dad has coached him and supported him from the beginning. Cameron is an amazing swimmer that can do all the strokes beautifully, with the exception of breaststroke. His hips just won't allow it. For years before we knew he had Perthes, his dad would wonder why Cam could never do the kick "legally." Now we know why. Even in this last phase of Perthes, there are some things his hips just won't allow him to do. While I am so grateful that he can now participate in so many activities, I can't help but wish he could compete and experience the enjoyment of sports and daily life completely pain-free like other kids. Even though I know the outcome could have been much worse, as a parent you don't want your child to suffer at all.
So Cameron was "released" from treatment yesterday. Released to enter the world with hips that are different but hopefully stable enough to carry him through all the things his heart is set on. Chris and I left the office with a smile and the hope that the battle our son has been fighting will be over for a while, and that this "quiet phase" he has entered will allow all of his dreams to come true.
Friday, July 29, 2011
Friday, May 13, 2011
Running like the wind
Today was another milestone for Cameron. He made the Middle School Track Team and competed in his first ever track meet. He ran the 400 meter event. This time last year he was still recovering from surgery and battling his way back to "normal." Whatever that means for a Perthes kid.
This may not seem like much to many, but to us this is HUGE. He competed in class to earn a spot on this team. He made the team with a fast enough time to qualify, but more importantly hips healed enough to allow him to compete. He has limped for years, hurt to walk, and fought through it all. And now today, he runs, and without pain...wow!
So today, he ran like the wind. He wasn't a first place winner by having the fastest time, but he was a big winner in his battle against Perthes. His hips allowed him to run today, without pain, and he did.....so proud!
This may not seem like much to many, but to us this is HUGE. He competed in class to earn a spot on this team. He made the team with a fast enough time to qualify, but more importantly hips healed enough to allow him to compete. He has limped for years, hurt to walk, and fought through it all. And now today, he runs, and without pain...wow!
So today, he ran like the wind. He wasn't a first place winner by having the fastest time, but he was a big winner in his battle against Perthes. His hips allowed him to run today, without pain, and he did.....so proud!
Living with Perthes - Cam's story: The day life changed
Living with Perthes - Cam's story: 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 sh..."
Monday, May 9, 2011
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.
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.
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