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LUKE AT DUKE! Welcome to Luke's page! Luke received a stem cell transplant using unrelated umbilical cord blood on June 28, 2002. Thanks for checking on his progress. It means a lot to us that you care. Here's the latest...
Journal
Saturday, August 23, 2003 1:07 PM CDT Hi everyone!
It's been a long time coming, and we are so happy to bring you this latest update. Luke returned to Duke the last week in July for his one year studies. In a nutshell, he's doing very very well! Now, for the details...Luke is now on only one oral med, hydrocortisone. This is to boost his cortisol level which is now only slighty below normal levels, where as it was extremely low six months ago. He has been off all his immuno-suppresant drugs for over a month and shows no signs of GvHD. All his test results to date look great showing either improvements or no progression of Sanfillipo. His developmental study went well also indicating that he continues to make progress in all areas of development. Dr Escolar at UNC felt that Luke made big strides since his last visit. I feel that Luke improved as well, however I told her that I think that Luke was unfairly scored low at that previous visit. He was jet-lagged from our trip and had been sedated for an MRI the day before. Because of that, he wasn't his usual happy playful self. So, while Luke continues to do well developmentally, I feel it is more of a steady progression, rather than a big jump forward in the last four months. Dr Kurtzberg told me that Luke is the most verbal of all the kids she has seen with this disease. He is routinely using 3-4 word sentances and increasing his vocabulary, which is pretty incredible. Dr K cautiously said that if Luke continues to progress at this pace over the next year, she feels that the transplant will have done Luke some good. Anyone who knows Dr K, knows that she is not one to speculate on this kind of thing. So those were some powerful words coming from her. With that being said, we both agreed that Luke is still very young and the best approach is to take this one day at a time. We'll just be thankful and enjoy this wonderful quality of life that Luke has today!
Speaking of Luke's quality of life, it improved greatly this week when his central line was removed after being in place for over fourteen months! No port was neccessary as his labs are looking so good. His platelets are 146K, just shy of normal levels! Next week, Luke will be able to join his brothers bathing and swimming...a much anticipated event around here. I hardly know what to do with myself in the evenings now that I no longer have to flush his line or change a dressing! The whole family is rejoicing in Luke's newest taste of freedom.
Luke's next big step will be in mid September when he will begin preschool at the Experimental Education Unit(EEU) on the University of WA campus. It is an excellent school run by child and human development specialist and grad students. I did a ton of research and know a handful of families that send their kids there. I've seen and heard only excellent things about the school. Luke will attend five days a week for 2 1/2 hours in the morning. It will be exciting and interesting to see how Luke does in this environment. I'll keep you posted.
As for our family as a whole, we are in a good place at the moment and know to cherish this time. We had a wonderful summer with trips to San Diego to visit family and celebrate Yiaya and Papou Ego's 50th wedding anniversary, the Washington coast, Victoria BC, and Hood Canal. We are very thankful for the health of our family, for the continued support and prayers of our friends and family. We feel very fortunate and blessed to have this wonderful news to share with all of you that have made this very long journey possible to endure. This has been, and continues to be, a group effort that extends beyond just our family. The generosity we have received from friends, neighbors, teachers, and the community as a whole, is overwhelmingly beautiful. Thank you all so much!
With love, Athena, George, and the boys
 Look at past journal
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Hospital Information: We are back home in Seattle!
Let's keep in touch...
Please e-mail us at georgeathena@msn.com
for our home address and phone number.
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