In about a half an hour or so, Rafi is going to get her 8th infusion of busulfan. 2 days down and 2 more to go on this drug. Halfway done with one. It’s nice to achieve little milestones. Now if we could just figure out the best way to do the bath and bandage changes in the hospital that would be great, because it’s a huge hurdle to overcome. Rafi is such a strong willed little girl that all I can think is that it is a blessing and a curse. Much more of a blessing, but there are downsides. One of the big jokes about her when we were back in NY with our occupational and physical therapists was that Rafi was just incredibly self directed. She will do what she wants when she wants to do it. Well, in that vein, hell hath no fury like a 2 year old who wants to be done with a bath and bandage change. At least I can report that she has an incredibly healthy set of lungs.
I think she is showing some signs of the effectiveness of the chemotherapy. She’s just not herself and you can see it in her face that she isn’t feeling 100%. She vomited for the first time today but that could be from the ativan we gave her earlier in the day, or it could be from the cumulative effects of all the drugs. Who knows. What I do know is that she is starting to warm up to some of the people in the hospital. The past couple of days have been a whirlwind of new faces for her. Thankfully, she had a very fun time this morning with her feeding therapist and her occupational therapist. Jackie and I were saying how nice it was to see her laugh and enjoy herself. We’ve only just started this process but we know how important it is to see the little things. It was only about an hour and a half of the day but it is the time I am going to remember most.
While she hasn’t had many more wounds or blisters, we can see that her skin quality is trending downwards. It’s impossible to know why. I have given up trying to figure out cycles and rationalize reasons why she gets worse then better. For every step forward there are sometimes two steps back. Sometimes we get two steps forward with no steps backward. There is no rhyme or reason. It’s just EB. And in the end, that’s why we are here. Even if there are two steps backward at this point we know we’ve taken four steps forward.
I am in our apartment tonight and Jackie is in the hospital room with Rafi. Hopefully they are both sleeping comfortably. We are on the road to recovery. I know it to be true. Another thing I know is that it is hard to verbalize what goes through my head as I read all the comments and emails we get from you all. It’s nice to know that there are so many people pulling for us, pulling for Rafi. I’ve been surprised by those that don’t know us, and surprised by those that do. I often think of my high school friend, Mike Weiss, who was diagnosed with MS a few years ago. His strength, courage and determination in getting out in front of his situation really inspired me and gave me a strength to deal with this that I honestly didn’t think I had. This is a quotation from his site www.mymsteam.com
“When I was first diagnosed with Multiple Sclerosis on April 26th, 2004, I experienced an overwhelming feeling that I had just lost control over my future. Instead of giving in to that feeling and letting my MS control me, I decided to take a proactive approach and started to build a support team to manage my MS……..My goal is to help others realize that they must own their MS, be proactive, and continue to do something every single day to put themselves in a position to be successful.”
His words are not only applicable to MS. They are applicable to EB as well. Jackie, like Mike, did everything she could to give Rafi the most normal life possible. She was proactive. She organized a play group, she took Rafi to music classes, she worked hard in finding the right school for Rafi to go to and got her accepted into it (not an easy task in New York City). She didn’t let EB stand in the way of Rafi living and enjoying life. Jackie, like Mike, not only speaks those words, she lives them everyday.
Just like my little Rafi and Jackie, Mike is inspirational in fighting another disease that as of yet, has no cure. He was always a strong guy, but now he is a giant who I am honored to know. He has a short, 1 minute video on his site that I urge you to go and view. If my mother was still alive today she would be incredibly proud of him. She always loved Mike and I know she would love Jackie.