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| Sinatra 18 months ago. This was her first morning in the hospital |
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| Here is Sinatra 1 year ago. |
There are some days that we all wake up and things seem so normal, which scares us because we know that the roller coaster ride that we started in 2013 doesn't end. Recently we sat and talked about what we were doing last year at this time and remembering how difficult things were for our entire family. We have been in Maintenance for almost 6 months now which means we are about 12 months from the end of treatment and true to form this has been the phase to try to get us back to normal. In these past 6 months we have seen many things change from our last years experience. Here are a few updates on Sinatra and her battle with Leukemia:
- Sinatra has started swim lessons again and loves them. Sinatra is limited to pools that are known clean to avoid infecting the port in her chest, therefore she cannot go into public pools, natural bodies of water, water slides/water parks. Just prior to her being diagnosed we had her in swim lessons and she absolutely hated it, now we have a hard time getting her out of the water!
- Sinatra's hair is growing so fast and it has changed from when she was diagnosed. When she was diagnosed she had almost white hair that was straight with a little curl in the back. Today it is more of a dirty blonde color with curls all over. We are very excited every day that she wakes up with bed head!!
- Sinatra has started pre-school. This was one of the happiest but most nerve racking decisions for us to make. Pre-schools unfortunately are filled with sick kids and the thought of Sinatra being exposed to that is so scary. Patti's preschool has been incredibly supportive and took time to sit with us and discuss how to work with Sinatra and Leukemia.
- Sinatra has been going to Disney, Restaurants, Parks, Petting Zoos, Malls, Birthday parties and indoor play facilities for kids.
- Sinatra will be going to visit family in New York in October for a family reunion and her great grandmother mimis birthday.
- Sinatra became a big sister to Soleil. Soleil was born on March 5th and Sinatra absolutely loves her.
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| Sinatra in swim lessons |
Sinatra has also hit a very important milestone today. Today is 18 months since Sinatra was diagnosed with very high risk Leukemia (A.L.L.). This milestone doesn't mean the end of treatment or she is cured, this milestone is simply a time period that has shown some significant correlation to an event free survival based on whether someone relapses before or after this milestone. To explain it more clearly, some Doctors or journals will say that if you are in remission at 18 months post diagnosis without a relapse, the prognosis for an event free survival increases. Today is that day and we couldn't be happier.
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| Sinatra with her baby sister Soleil |
