Eliot went to college in UK last fall, training, studying, running a 5K race for Thanksgiving, living the life to the fullest, ready for COVID to disappear so he could go back to his favorite activities: soccer and basketball.
But then there was this knee pain; it was constant and started maybe after a session at the gym where he might have tried a bit too hard. We started PT. Unfortunately, after month of PT, the situation was not improving; We decided to get an MRI.
The call from the orthopedist was brutal. You have extensive AVN in your knee, we are sending you crutches right away to your home and you should not be weight bearing until you see a specialist.
AVN stands for AVascular Necrosis. It happens when the supply of blood stops in some parts of the bone leading to its death. If it gets closer to the joint (ankle, knee, hip, shoulder), it eventually collapses and patients need a joint replacement, a heavy surgery that happens after years of pain management with opioids. Any activities which impact the joint should be avoided. It means no more running, jumping, soccer, basketball, or skiing for Eliot. For the rest of his life. This for a 19-year-old athlete is a substantial alteration to his quality of life. Eliot has it in knees, hips, shoulders, and 1 ankle.
A study from St Jude shows that it is a side effect from the cancer treatment. If systematic imagery is done, 70% of the kids will have some signs, but only 30% will be symptomatic, with pain, disability, and heavy surgeries in their future. They are mostly teenagers and young adults.
No one knows why it happens to some kids and not others; No one knows how to mitigate or slow down its progress; No one knows why some bones spontaneously repair themselves (a very low percentage unfortunately). No one knows... It is not taken into account in the standard of care by the Children Oncology Group and there is currently no study open in the US on this.
When Eliot was diagnosed, we were told that 60% of the survivors will face some kind of late effects from the treatment. We never thought that those late effects could be as dramatic and life crippling as the cancer itself. Of course, all of us will chose “life over limbs “, but does it have to be that way?
Inspired by Eliot's story, Nemours has decided to create a multi-discinplanary team involving oncology, nutriontion, orthopedics and radiology, to study the skeletal health of all kids facing cancer treatment at Nemours. We are sponsoring an hour during Radiothon on Friday September 17th, from 5-6 where our interview will be aired and any funds collecting during that time will go excusivley towards the skeletal health study as will any funds raised through this portal. We will match dollar for dollar up to $25,000 to give a chance for other kids to not face the pain and problems Eliot has to face today.
