Saturday, May 16, 2015

Facebook update from Help Anton

Day +50 Today we are at day +50, halfway to our 100 days post transplant! When we started the process to see of Anton could receive the bone marrow transplant it felt like it would never get here and now to be at the halfway point is just so exciting!!! Anton's skin is still doing so great. He had a blister yesterday that I decided not to pop and today it was gone. Normally I have to pop his blisters or they keep growing and growing but this one just disappeared. It is so neat to actually be able to see Anton's skin changing!! We also had some very special visitors. Alex and Jamie Silver were in town from New York for a fundraising event where they were able to talk about Eb Research Partnership ( They took time out of their busy schedules to come see us and we were just thrilled to get to hang with them for a bit. They are both so sweet and Anton really enjoyed their visit. The EB community is like an instant family. You have so much in common. Thanks for coming to see us today guys we enjoyed seeing y'all. I got a volunteer to come for a few hours so Jason came to get me. We got some dinner and went back to the RMH to eat and I got a chance to see some of the other families there. Today is also MPS awareness day and two of Anton's friends at RMH have received bone marrow transplants as a treatment for MPS (they both have hurlers syndrome). There is currently no cure and as we know with eb awareness is key so check out to learn about MPS and to find out ways you can help. I wore purple today to honor these sweet girls and when I went to RMH today I got to see them both!! They are both so adorable! Anton will be able to go back to RMH tomorrow as long as he doesn't spike a fever tonight. His numbers did drop a little but they are still better than they were when we got here. We also got to see Dr. Tolar today! He said that he is very pleased with Anton's progress and he told Anton that he was so proud of him. He said for the whole first year after transplant we are going to have to be very careful to treat anything that comes up quickly (like illness or skin infection). It was good to be reminded that although Anton is doing great we have a long way to go before we can take a huge sigh of relief. Overall Anton is doing really really good and we are so thankful! WBC 2.8 ANC 2.5 - May 16, 2015 at 12:06AM

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