As expected we had a very good day. Her numbers jumped again and my math skills are not advanced enough to count that high. What this means is that her last dose of G-CSF was last night. It’s very exciting. Come tomorrow we are going to start transitioning Rafi from IV medications to oral medications. It will take a few days for all this to happen but it is a very important step for us to leave the hospital. It takes a few days because she gets a lot of medications (some every 4 hours) and her stomach would not be able to handle all of them at once. Metaphorically, it’s similar to training for a marathon. You wouldn’t be able to run one the first time you try.

What made today great was we unhooked Rafi from all her pumps and “tubies”, exited the hospital, smelled the fresh air, Rafi felt the wind on her face, and she got to go on the swing. She loves to sit in a swing and go back and forth. If it wasn’t for the mask, we would have seen a smile from ear to ear. She didn’t want to get off the swing but she was cold, even though wrapped in a blanket and in a sweater, so we had to go back inside. For a short time, I felt like a regular family who took their kid into the park on a weekend. It was nice to see Jackie and Rafi so happy. It was a refreshing feeling that I look forward to having again tomorrow. Hopefully soon, we will be able to get Rafi to a carousel where she can sit on a horse, a green horse of course. I’ll post the video of her on the swing in the next day or two.

She had her physical therapy as well and she was a champ. She walked all over the hallways, very quickly at that. I would throw things down the hall and she would go and fetch it. Dr. Wagner commented that she wasn’t a dog. It didn’t faze me in the slightest, Rafi was running around working those leg muscles. It was great to see.

Today in the New York Times there was an article about EB and the treatments being developed. You can see the article here: Rays of Hope in Battling An Agonizing Disease

They refer to the work here at the University of Minnesota and Dr. Wagner is quoted. I think it is funny that they call bone marrow transplants for this disease more controversial than gene correction. But I will let you all decide how to view it.

Patient #9 starts her chemotherapy at 4am tomorrow. You can go to her caringbridge.org site and read about her progress by searching for mckenziegray. We wish Kenzi and her family all the luck in the world as they start their journey. We’ll be knocking on their door tomorrow morning.

Until tomorrow……..