Join the Team to Help Children at Nemours
Inspired by Eliot's story below, Nemours has decided to create a multi-disciplinary team involving oncology, nutrition, orthopedics and radiology, to study the skeletal health of all kids facing cancer treatment at Nemours. We (the Hayes family) are sponsoring an hour during Radiothon on Friday September 17th, from 5-6 when our interview will be aired. Any funds collecting during this time will go exclusively towards the skeletal health study, as will any funds raised through this portal. We will match your donations, dollar for dollar, up to $25,000 so other kids can avoid the pain and problems Eliot has had to face today.
After over 18 months of grueling chemotherapy, Eliot went to college last fall. This was a major milestone in his cancer journey, and he threw himself enthusiastically into college life; studying, working out, and even running a charity 5K race at Thanksgiving. He was living life to the fullest, waiting for the COVID restrictions to disappear so he could go back to his favorite activities: competitive soccer and basketball.
But … there was this annoying knee pain; it was persistent and getting steadily worse. Eliot tried PT, but the pain was not easing so when he got home, an MRI was ordered. The resulting call from the orthopedist was brutal, “You have extensive bone death in your knee. We are sending crutches to your home right away and you should not be weight-bearing until you see a specialist.”
Bone death, or osteonecrosis, is known medically as AVN (AVascular Necrosis). It happens when the supply of blood stops in some parts of the bone leading to its death. It can cause intense pain that is only eased by opioids. If it gets close to a joint (ankle, knee, hip, shoulder), it can cause it to collapse triggering a joint replacement, a very heavy surgery. Any activities which impact the joint should be avoided. For Eliot, this means no more running, jumping, soccer, basketball, or skiing for the rest of his life. For a 19-year-old athlete, this is devastating. Sadly, further scans have shown that he has AVN in his hips, shoulders, and one ankle, as well as severe AVN in both knees.
A study from St Jude shows that AVN is a side effect of the cancer treatment. If systematic imagery is done, 70% of the kids will have some signs, and 30% will be symptomatic, with pain, disability, and heavy surgeries in their future. They are mostly teenagers and young adults.
No-one knows why AVN happens to some kids and not others. No-one knows how to mitigate or slow down its progress. No-one knows why in some very rare cases, some bones spontaneously repair themselves. “No-one knows” can be applied to many aspects of AVN. It is not taken into account in the standard of care by the Children Oncology Group and there are currently no active studies of it in the US.
When Eliot was diagnosed, we were told that 60% of the survivors will face some kind of long-term side- effects from the treatment. We never thought that those side-effects could be as dramatic and life-crippling as extensive and permanent bone death. Of course, all of us would chose “life over limb“ but is that a choice we have to make?
