Yesterday Georgia had her routine clinic appointment, her weight had dropped her last two appointments but I went in feeling confident we'd at least held, maybe... just maybe put on a little bit.. no such luck Georgia's weight has gone from 10.29kg, 10.14kg, 10.11kg and yesterday it landed at 9.96kg - my stomach sank. I knew this meant a conversation about GVHD. I have been so critical of her eating - not so much as to what she is eating but in terms of the volume.. like a typical toddler it fluctuates but if she has a "light" day the next day she usually makes up for it.. she'd eaten two hard boiled eggs in a row the day before! During clinic visits you show up for labs first then have your actual appointment with the doctor about an hour later. As we wandered the halls waiting to see our doctor I tried to keep Georgia happy and distract myself.. all of a sudden I found myself in a panic.. we can deal with the food stuff, maybe a different taper ... but what about her other numbers. Each week I do this little dance.. we'll take this over that... or everything will be okay as long as... essentially I hold my breath until I see the doctor. Yesterday she came in and said "how are you guys?".. I looked at her and said, you tell me... Georgia's red blood, white blood, platelets, ANC were all fine, her ALT, a liver enzyme had gone from 140 last week to 245 - this is concerning. Her liver has been and continues to be beat up by chemotherapy and now several of the medications she is on.. this is one possible explanation, the other is liver GVHD.
Today I am waiting for a call from our Children's doctor, she was going to touch base with our SCCA doc who also specializes in GVHD to see what he'd like to do.
There is so much of me that is frustrated and at the same time I find myself going.. did you really think it would be that easy? I want us to taper these medications, have her system respond normally and move on.. not so fast. Slowing the taper isn't the end of the world but I still have bouts with just wanting to complain to someone how I want my life back.. I want to take Georgia to the park and play dates, to talk about discipline and milestones... not GVHD and a steroid tapering schedule.
Oh honey I don't blame you! Your strength is amazing. Every day you are closer to getting back to your "normal" life. Know there are people all over this country shedding tears with you and praying for you.
ReplyDeleteWe miss you dearly...Charlotte's nose is clear so whenever you need another walk around Greenlake we are eager to meet you. Love to you.