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!