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.