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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.

Feb 16, 2016 9:47pm (Scott)

… to have lemon ice dessert and noodles!

Feb 16, 2016 7:45pm (Scott)

Maya is out of the OR recovering. She has a port placed in her chest with a direct line, and she’s taken her first intrathecal dose of chemo drugs. All went well.
The staff at Children’s Hospital Oakland is unbelievable (surgeon found us in the cafeteria to tell us all went well), and the support from family, friends, and even strangers helps us maintain our courage.
THANK YOU.

Feb 15, 2016 1:31pm (Scott)

Maya went in for the procedure about 9 am and was in recovery by 1030.
True to her personality, she was not sad, scared, or defeated… she was f#@*ing pissed off! (Her temper goes to eleven 😉
Now It’s 1115am and she’s resting comfortably with mommy watching Frozen for the third time in 24 hours.

Here are the details:
She needed extra bone tissue to be taken because her marrow was too thick and sort of “stuffed” with the leukemia cells. They took two pieces of her hip (both sides). Spinal tap went fine. The extra biopsy might need more time to diagnose because it takes a while to break down the bone. Doesn’t seem any worse…just might take longer to establish a plan of care. She’ll likely be in some pain for a couple days. Blood pressure is running high but it could be her fluid overload. She is being monitored very closely.
(just checked blood pressure again and it’s much improved)

Feb 15, 2016 12:39am (Scott)

Talking with Maya about getting blood taken…
Dad: Last time you said it didn’t really hurt. Did you cry because it hurt or because you were scared?
Maya: I cried because I was scared.
Dad: You said the needle looked kind of like a butterfly.
Maya: Yep it does.
Dad: Maybe you can just imagine a butterfly landing on your arm.
Maya: (pauses)…. Well it’s a kind of pokey butterfly.

(Twelve hours later when they came back for the next blood draw, Maya say on my lap and, with purpose, held her right arm out to the nurse. She handled the process without any help from me. I am in awe of her strength. . . Three year olds don’t care much for boundaries much less limitations on determination or courage.)

Feb 15, 2016 12:33am (Scott)

Maya was strong today. .. little bit like a caged animal, but we make up some fun games and stories in her little room to keep her wild imagination engaged. There’s a big window where we watch the BART trains, helicopters and can see downtown. She ate a big breakfast and is learning to take needles like a champ.
I think her way of dealing with all this so far is to learn what the doctors and nurses do so she can convince her parents that it’s not so scary.