Feb 17, 2016 3:17pm (Scott)
Maya is working through recovery from all kinds of experiences, drugs, and procedures today. She developed a fever and low oxygen saturation in the early morning hours, but has bounced back nicely in the early afternoon.
It’s funny, I can talk her through a blood draw at any time of the day or night, but a simple nasal cannula at 2am was nearly too big an obstacle.
Her room is filling with toys and balloons, and we can see she’s feeling the love as she’s started to distribute princess stickers to the hospital staff who visit.
Watching her eat spaghetti noodles is one of the best things in the world.
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.
Feb 16, 2016 12:41pm (Scott)
Two blood draws and a long visit for ultra sound to check kidney function (we got to watch Lilo and Stitch!)
Lots of visitors in preparation for another lumbar puncture, intrathecal chemo, and installation of a mediport (aka buddah button).
All that, but the hardest thing is we haven’t been allowed to eat or drink anything since midnight. . . Thank goodness for Frozen.
Feb 16, 2016 12:46am (Sara)
Maya will be getting her central line placed tomorrow as well as her first chemotherapy treatment. She will be getting a “power port” also known as a “port-a-cath” or “mediport”. This will be inserted into a chamber of her heart and she’ll have it for her entire treatment (about 2.5 years). This will be used for chemo and med infusions. She will still have to get “poked” for blood samples when she is back at home though. She will also get her second lumbar puncture but this time…it will have a chemo infusion. We actually don’t know WHEN the procedure will take place tomorrow. She will be NPO (nothing by mouth) at midnight but she might have to go most of the day with no food or water. Ugh. I’m afraid we’ll have a hungry dragon on our hands. There are of course possible complications but we’ll just not talk about those unless we need to. After today’s great terrible news, I was a wee bit giddy…then we sat down with the hematologist and I was pulled back to reality. Our family will have so many changes and Maya will have to deal with many things that little baby girl should never need to. She’s going to feel better soon but will be delicate for a long time. She has this amazing understanding of what is happening. She probably understands as much as we do. I’m sometimes in awe at what she will do. Today she just put her hand out for the RN to take her blood. I know she is scared but she works through things. It’s amazing. She has decided to call her new central line access her “boddah button” since it will be right above her boob and she calls boobs boodah. The nights have been difficult since I have to leave her and Scott. I can’t stay by her side and talk things out with Scotty. I miss them both so much. The mornings have been difficult because I have to leave Lincoln. I can’t stay and play and nurse and eat and read with him. I know he is a happy boy and my parents have been taking wonderful care of him…but I miss him during the day and want to be able to snuggle him. Maya also misses him. They miss each other. Our wonderful friend Amy S dropped off some things for us today. Its amazing how little we packed yet when asked if I need anything…I can’t think of a thing. I’m feeling faithful today and I know it is because of the people in my world. Thank you…infinity with all my heart.
Feb 15, 2016 5:25pm (Sara)
We’re told it’s the most common and treatable form. Considering the big picture, it’s the most amazing news we can imagine. B-ALL is the type; she’ll have the opportunity to be in a clinical trial. The experiment guarantees at least standard of care or better! It’s also the kind that will let us not live in the hospital for 9 months. Also the type that she can have a power port for infusions that will let her be independent …even go swimming eventually. I’m in the best mood I’ve been in 4 days.
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 12:56am (Sara)
Tomorrow morning Maya has a bone marrow aspiration and diagnostic spinal tap. She will get put under anesthesia for the first time ever. I know she’ll be scared but…this is what can save her life. The hematologist said she shouldn’t be too sore unless they have to do an actual “biopsy” of the bone (if the marrow is too full of leukemia they sometimes have to take a chunk of bone). This will diagnose the actual type of leukemia. They will then puncture her lumbar to take fluid from her spine to determine if the leukemia is in the nervous system and brain. On Tuesday, she will get a central line as well as another lumbar puncture with her first infusion of chemo. A central line is a devise that will go into one of the chambers of the heart to distribute chemo as well as any blood or platelet transfusions she might need over the next…..8 months to 2.5 years. The time line is drastic and we won’t know which one we’ll be facing until the results are in. Different types of leukemia will take different treatments and while 2.5 years seems like an eternity…its the one we are hoping for since 2 years of it will be on oral. I will go into that another day. Tonight, I’m going to curl up next to Lincoln and try to sleep. Scotty is staying with Maya since the little guy hasn’t been allowed to be in her room at all. The separation has been a very difficult thing for the whole family but we are supported immensely by my parents. Our little Maya has a gigantic journey ahead of her and while I don’t think we have any idea how to handle this, we’ll take one step at a time. It has been overwhelming to see how much support we have been given. Speechless. Thank you from the deepest, richest, strongest part of my heart.
Love is Life. Goodnight.
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.)