What a difference 6 months makes!

Sinatra 18 months ago.
This was her first morning in the hospital

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 in swim lessons

• Sinatra became a big sister to Soleil. Soleil was born on March 5th and Sinatra absolutely loves her.

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.  

Sinatra with her baby sister Soleil

Thanks everyone for your support thoughts and prayers. It means so much to us. 

Maintenance was supposed to be easy!

Sinatra and Siena at Disneyland

We are so happy. Sinatra made it to maintenance.  This is such a huge milestone for our family but just as it was when she was diagnosed, it is hard to get used to this new normal.  We had our first chemo in December and have started the flood of daily medicines to give Sinatra.  One of the hardest parts we have found in maintenance is the steroids. Yes she is on the dreaded steroid again, albeit a 'lighter' type and dose than what she got at the beginning of treatment.  However these are in pill form and to get her to take them is literally a 5-10 minute fight two times a day. We had to put them in pudding and hold her hands to get these in her mouth.  This is not going to be a fun two years.  On a lighter note, the good news is we only have to do this five days out of each month, but it wears on you regardless.  I will say that while fighting with Sinatra and feeling horrible and realizing that she is going to equate mom and dad as the bad people giving her this horrible tasting pill, I did come to a realization (and I do say this with no judgement).  We have heard many times while getting treatment a parent or guardian saying that their child missed a home medicine because it was too hard to give them the medicine, or they didn't like it.  While giving Sinatra her prednisone (steroid), bactrim (anti-biotic), zofran (anti nausea), mercaptopurine (chemo) and methotrexate (chemo) one night I realized that yes this is horrible and makes us feel like crap, but I would rather have our daughter be mad at us and be scared every time I bring her pudding as long as that means what I did saved her life.  I will not miss a single dose of medicine for Sinatra.  We (as parents) discussed this early on that there is nothing in this world that would keep us from getting to a doctors appointment or giving medicine or getting a check up. To us every decision we make or made from December 2013 has been to save our daughters life.

Anyway here are some of the things that are making maintenance great:

Aunt Lori's Wedding

Sinatra at Sea World

• We got to take Sinatra to a restaurant for breakfast (in public)
• We skipped a night of giving Sinatra a bath (prior we did every night to keep her from germs)
• We had people over to our house for  a small get together (couldn't prior to limit sickness exposure)
• We signed Sinatra up for dance, tumble and art class (this was unheard of a year ago)
• Sinatra went in to get Siena at her preschool and loved it (sick kids, we avoided like the plague)
• We have visited Disneyland two times, Legoland and Sea World one time.
• She was able to go sit on Santa's lap at the mall (last year she was in a hospital crib behind a plastic barrier when Santa came to her room)
• Sinatra got to go on a trip to Big Bear and went tubing. 
• Sinatra was a flower girl at Aunt Lori's wedding
  
  

  

  Sinatra in gym class

I am sure there will be many more things that will make us happy and we will share them as we go!