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.
