This morning I spoke with Dr. Charlie Peters, from Mercy Hospital in Kansas City. He worked for a long time with Dr. Krivit (a well known and well respected and brilliant man) in Minnesota, which is one of the biggest transplant centers in the world. Unfortunately, Dr. Krivit has passed away, but I was able to speak with Dr. Peters for over half an hour.
He reaffirmed our decision. He has not seen anything published or seen anything in his experience that shows Cord Blood is better than Bone Marrow, in any disease. As there have been only 5 Hunter children transplanted with Cord Blood and it is too early to tell whether or not these transplants worked or not, he did comment that with regards to transplant, children with Sanfilipo (MPS III) seem to have the same problem with transplant not helping the brain as children with Hunter. Many more CBT’s have been done on children with Sanfilipo and these children have continued to have neurocognitive decline.
Dr. Peters said that the medical community is not smart enough yet to know why transplant is not working for these two groups. He admitted that it is not known for sure yet that Cord Blood will not help the neurocognitive aspect of Hunter’s, but he did say that there is much evidence to suggest that Bone Marrow did not work, and there is no evidence suggesting that any of this is changing with Cord Blood.
It amazes me how willing these specialists are to speak with me. Before I was introduced into the medical world, I never fathomed I would have the courage to call or email specialists all over the world and more, I never imagined that they wold make as much time for me as they have.
Dr. Wraith emailed me back within 6 hours of my email to him and when we were at the MPS Society Conference in Ontario this past summer, he sat down with us to look at Trey’s test results to give us his thoughts. Dr. Muenzer has called me at home after me sending him an email. The same with Dr. Kurtzberg. I have been able to set up lengthy phone conversations with Dr. Szabolcs from Duke as well as Dr. Peters. Dr. Stockler returns emails on weekends. When I called Dr. Lorne Clarke to see if we could come in to speak with him about transplant, he said “Come in next week.” He has a patient wait list of months.
They are amazing. They are busy, busy people who travel he world lecturing and attending conferences, experts in their field. And though I wish we could have gone the rest of our lives without knowing what MPS is, I am glad that since this is our life, we are surrounded by such an amazing community of intelligent, helpful, compassionate, and caring doctors.
