Michael Joyce, M.D. at Nemours Children’s Clinic in Jacksonville, Florida tells us about a new medical breakthrough stopped the cancer, and saved the boy’s life.
When Derek came to you, what kind of symptoms was he having and what did you know of his medical history?
Dr. Michael Joyce: Derek came to us after his reoccurrence. Initially, he had been treated University of Alabama, Birmingham for a localized non-Hodgkin’s lymphoma of his arm. He had been treated with standard Chemotherapy and he did very well. Unfortunately, and what’s unusual about his case, is that he developed a central nervous system relapse which only occurs in less than 5% of children with his disease. The unusual thing about Derek’s case was not that there was a central nervous system relapse where you usually find some cells in the spinal fluid, but he also had very large bulky masses in his spinal cord. One large mass in his neck was causing paralysis and nerve dysfunction and required emergency surgery at Sacred Heart in Pensacola by Dr. Kennedy to relieve the pressure. He was then treated by our colleagues in Pensacola and came to us for consideration of a bone marrow transplant. Derek was very debilitated, barely able to lift his head off the bed, and had a lot of upper and lower extremity weakness. Dr. Heger, a neurosurgeon, and I and a physical occupational therapist, worked with him and fortunately were able to harvest enough peripheral stem cells for a transplant. But, I give a lot of credit to Derek because when Derek first came to visit and we were doing our initial evaluation for a transplant, we told him he wasn’t strong enough to get through a transplant, but if he was willing to work with the therapy, and the rehab, and get stronger, we were willing to do the transplant. He came back a few months later in much better shape, and after his transplant he went to Brooks Rehab and made remarkable progress and the last time I saw him he was able to stand on his own and he’s done very well. He has a great, great, spirit. He had a lot of instability in his neck from the original surgery and we were not able to do the fusion before the transplant because we felt that would delay his oncologic therapy and we were very worried he would relapse again. He recently had a spinal fusion by Dr. Heger and then he went to Brooks after that and had some intensive rehabilitation. He’s doing remarkably well. He’s six months out from his transplant and in complete remission, doing very well and we hope that he’s been cured.
Can you give me a sense of how big that tumor was and what physiological effect it was having on him in terms of his function?
Dr. Michael Joyce: It’s like someone putting a tennis ball in your cervical spine. It’s a big, massive tumor, almost literally like a ninety-degree bend, in the cervical spine from the tumor. It was massive and it was growing very fast because he literally presented over a few days from having a little bit of pain to all of a sudden going to paralysis.
He was pretty much paralyzed when you saw him. When you saw the tumor, did you have questions in your mind whether the paralysis was going to be permanent?
Dr. Michael Joyce: My colleague, Dr. Jeff Swartz of Pensacola, saw him and we had talked about Derek’s case and they did the emergency laminectomy and in that situation you have to get the pressure off the spine. The problem was that it had already caused significant damage and we really weren’t sure if he was going to improve significantly when I first met him about a month or so after his recurrence. I give Derek and his mom a lot of credit; she’s been the coach and she pushes him, and he pushed himself. I give Derek a lot of credit; he pushed himself to make the improvement, to get through the transplant, and now with this spinal fusion, he’s continued to make even more progress because his neck is more stabilized where he had still some pressure because of the kyphosis , or bending of the spine, which Dr. Heger just repaired with the spinal fusion. He has a better functional outcome.
As I understand it this Kaytan bone marrow drug is a crapshoot, pardon my using that expression, because it hadn’t really been used on kids. Tell me about that and why you were able to do that.
Dr. Michael Joyce: We were one of the first centers to use it in children. It’s been reported occasionally in children, but our adult colleagues use it all the time. It’s a drug called mozobil, which helps release the stem cells from the marrow. Because Derek had had a recurrence and had a lot of treatment he was not a good mobilizer. We were able to get the medication approved for him and by giving the medication were able to successfully harvest his peripheral blood stem cells, which would give him enough cells to undergo the high dose chemotherapy necessary for the bone marrow transplant, which he needed. We felt, because of his very bulky relapse, we needed to do very aggressive therapy to help prevent it from coming back again.
In this kind of a non-Hodgkin’s relapse, why is the stem cell transplant so important and is it your only option?
Dr. Michael Joyce: Well, sometimes you can use salvage chemotherapy, but in his case, because he had such a dramatic bulky recurrence, and because we felt if he could get through the transplant, it would be one big intensified therapy rather than continuing on chemotherapy where with each cycle of chemotherapy he has the risk of infections. We would be better off getting him through the transplant, be done with his therapy and then address the neurosurgical issue, the spinal fusion and the rehabilitation therapy that he really needed that would be hard for him to get while he was still getting therapy. So, that was the decision of the team here, with our colleagues in Pensacola, and Dr. Heger the neurosurgeon. We are very fortunate we have Brooks Rehab here in Jacksonville. They do a very good job with intensive therapy and the children who need it.
What can Derek look forward to in terms of activities, in terms of how much improvement he can make? And start out by saying where he could have wound up and what you see for him now.
Dr. Michael Joyce: Well, remember when I first met him he could barely lift his head off the bed. Now, he is able to sit up, he is ambulatory, he has a special wheel chair, but he is ambulatory on his own. He has recently been able to stand on his own. I think, with work and continued determination that he has, I think, he’s going to continue to make progress. It’ll be slow, steady progress, but I think, eventually Derek is going to find that he’ll be able to enjoy activities. We don’t think he will ever be 100%, but I think he will be able to be ambulatory with some assistance in walking, but that he will eventually be able to resume a lot more activities than he has be able to up to now. That’s a very gratifying thing. He’s got a tremendous personality. He is a very special young man and we are very happy for the outcome.
This franchise is called Medical Breakthroughs. That sounds to me like that’s what we’re talking about here. Tell me about that in terms of what you were able to do for him.
Dr. Michael Joyce: Well, we had heard about Derek’s case because we have a tumor board every week with our colleagues in Pensacola and Orlando and we had presented Derek’s case, but we didn’t fully appreciate how debilitated he was until he came here. And I wasn’t sure he would ever recover neurologically to be able to survive a transplant and our biggest concern there was: would he be able to sit up? Because, if you can’t sit up and you lie flat for two or three weeks during your transplant, you’re going to get a bad pneumonia and you’ll probably die. We gave Derek some clear goals, we told him what he needed to do and where he needed to be and with a lot of hard work and help from his therapist, he was able to improve. Each week we heard from Dr. Swartz that he was improving. And I have to admit, we had our doubts and hoped he was not looking at Derek through rose-colored glasses, but when he came back for his transplant he was much improved, and to see him now and how much more he has improved, is really gratifying because here is a young man that we weren’t sure was going to regain any of the function that he has regained and through a lot of hard work and a lot of good surgeons and good therapists, he’s really done remarkably well.
One other thing about this drug, the fact that you were able to use it in sort of an odd situation what do you think that means for this drug and did you kind of take a chance here?
Dr. Michael Joyce: Well, we don’t take chances. It’s been approved for adult use. I would say, worldwide, there are, probably a handful of case reports. It is a medication that allows the stem cells, which are in the marrow, to be released into the peripheral blood and that’s how we were collecting his stem cells. We were hoping to do that and it was a big need for him because he wasn’t in a state to undergo a bone marrow harvest. We didn’t want to put him under general anesthesia, because of the risk of complications and with his cervical spine not being stable we didn’t want to do that so, we just pushed the envelope a little bit for Derek. We were fortunate. We weren’t sure we were going to be able to get insurance approval, because it’s a very expensive medication, but with one dose we got enough cells to do his transplant. We were very happy.
Do you think you may have opened the door to use this drug in other cases?
Dr. Michael Joyce: Definitely. If we had another child for whom we needed to harvest stem cells and who wasn’t mobilizing like Derek, we would certainly try and use it. We know that it does work; other people have reported it. I think, in time, it will be approved for pediatric use.
There is an approval process for the use of the drug?
Dr. Michael Joyce: It is an FDA approved medication. In pediatric oncology there are many drugs that aren’t officially approved for kids that we use as a part of our care. We don’t take chances. The benefits outweighed any potential risk and he did very, very well. His mother was crying when I came in and told her how many cells we collected.
He’s a lucky kid but it sounds like he a pretty good group of people were looking after him.
Dr. Michael Joyce: His mom is a very good coach and she made us work hard too. She wasn’t going to let us off the hook. We had to make a commitment to Derek, not only ourselves, but also the team in Pensacola. We told Derek we were going to do whatever we could to help him and he had to do everything to help himself and he did. A lot of the credit goes to Derek and his family. They have been all over the state getting care for Derek, Pensacola to here and mom’s left no stone unturned to help her son and seeing how well he’s done is very, very gratifying for all of us who have been involved.
If you could take a wild guess at how rare this type of cancer is?
Dr. Michael Joyce: There are two types of lymphoma in kids: Hodgkin’s lymphoma and Non-Hodgkin’s lymphoma. The anti-plastic large cell, we see in about 25% of the non-Hodgkin’s lymphoma, but, to have it recur with this bulky central nervous sensory, that is very unusual. Again, central nervous system relapses are less than 5 % for that disease. Fortunately, it tends to be very chemotherapy sensitive tumor and his responded; he went into complete remission rather quickly. Unfortunately, he presented with such massive recurrent tumors in his spine. I think it surprised everyone how quickly he went from having some neck pain to all of a sudden not being able to move his arms in a matter of 24 to 48 hours and I credit Dr. Swartz and Dr. Kennedy giving him a physical and getting him into the OR and getting the pressure relieved, which is really critical in that situation.
So had anybody seen this before?
Dr. Michael Joyce: I’d never seen the bulk of this. I mean, when you see the x-rays, It’s like a u-turn. You didn’t need a radiologist to say there was something wrong with that kid’s neck.
END OF INTERVIEW
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Saving Derek From Paralysis -- In-Depth Doctor's Interview | Medical News and Health Information
Saving Derek From Paralysis | Medical News and Health Information
Saving Derek From Paralysis | Medical News and Health Information
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