Feb 17, 2016 1:37am (Sara)

Today was probably one of the longest days of my life, perhaps only second to Friday February 12th…but it is over now. Maya’s was NPO starting at midnight and while her procedure was set for today, we were on the list as an “add on”. This just means that she’d get in when Surgery, the hematologist, and a room was all available at the same time. The planets finally aligned at 4pm. I’m sure you won’t be surprised to hear that she was amazing. Typically, this child gets intensely hangry so I was really anxious that she’d turn into a dragon but she actually didn’t have a melt down till 3:30 today! We were careful not to eat or drink in front of her and had put away her snacks and juice cups. It was still very difficult for her and she often complained “I want some food mommy”. Heart breaking.

Her day started out with a kidney ultra sound because her blood pressure has been pretty high. A bit too high for comfort. It took a long time but she was able to lay on daddy and watch Lilo and Stich. Maya’s kidneys are enlarged as is her liver and spleen; this is likely due to the leukemia infiltrating the organs. Her liver, spleen and kidneys should shrink to normal size with no permanent damage once the chemo does it’s magic. Her kidneys are working well considering but since her blood pressure remains high, they have added a blood pressure medication for control for a while. They let me carry her into the OR again this time no music – though she made me play Let It Go this evening and I cried. She went to sleep with an IV med (propofol for my fellow clinicians) and she was out in about 15 seconds.

I’m happy to report that there were no complications during her procedures and the surgeon came out to the cafe where Scott, Lincoln, my parents, and I were finally having a meal to tell us she was in recovery. He shook Scott’s hand and I cried. So. Now she has her central line (aka boodah button). It is quite sore for her but it works and she didn’t need the pokey butterfly for tonight’s lab draw. Woo Hoo. Her lumbar puncture (LP) went fine as well. She received intrathecal chemo (in her spinal fluid) – her first exposure to chemo.

Her diagnostic spinal tap yesterday actually came back pretty clear but since the amount of fluid taken is a very small sample, they infuse chemo into the spine as a prophylactic measure. They have seen leukemia return in kids/patients and only attack the brain. Because we have an amazing blood-brain barrier, they need to treat the brain and its supporting fluid to make sure it doesn’t have any leukemia hiding.

After she ate her dinner, Maya was given her first steroid (Decadron) and her first IV chemo – this infusion will be what fights the leukemia systemically. She is on an anti-nausea med and will likely start zantac to settle her belly. She hasn’t complained yet but I had to come back to be with Lincoln. I will return tomorrow morning early to see her and hopefully she’ll still be feeling good.Today marks the the first day of a very long journey. We have been told that the chemo will work fast and that with in 4 weeks we’ll know if she’s in remission.

That is not the end of the journey but the start of the next phase. I’m actually not really sure what the next phase includes…but I know she will be strong. I know she will fight. I know she will prevail. I know she will be cured. I know this because she is a dragon. She is a fire breathing, high flying, dragon covered in armor built by the love and support from all of us. Thank you again and again for helping us give Maya the tools and strength to fight this thing. Love is life.