Clinc Visit Today

Well, today we arrived at the clinic at about 9:15 for our 9:30 appointment and left at 12:15 so the good news is that this was our quickest visit yet! No surprises today! Her hemoglobin and platelet counts are NORMAL (which means her bone marrow is frantically producing normal blood)YAHOO! Her white blood count is still low, it has actually dropped since our last visit. This is typical because of the medications. She is still really susceptible to any type of infection, so we will remain at home and sheltered with raw hands that have been washed 1000 times a day. Today she just received 1 medication through her port and no bone marrow aspiration.

Our biggest issue right now is this steroid, Dexamethasone. I love it for helping her get through this, but HATE what it is doing to her. She has ballooned up to twice her normal size. She is almost unrecognizable. I have had to pull out some size 4 shirts (she wears a 2) just to fit over her head and belly. Her cheeks, chin, neck, back, and belly are HUGE. She is so swollen and heavy that it is difficult for her to walk, get down off the couch, and do normal things. She looks so uncomfortable. She has gained 6 pounds, which is about 1/5 of her body weight in 7 days. It also makes her terribly grouchy. She is mad at anything poor Cade does. And hits me repeatedly when she doesn't get her way. It makes her not be able to sleep well. During the day she takes 2-3 20 minute cat naps and then wakes up 4-5 times each night. The last REALLY annoying side effect of this steroid is her appetite. She literally wants to be eating something every minute that she is awake. We have been trying to steer her towards low sodium foods that are also low in calories, but she is very opinionated about what she wants to be eating. I feel like if I feed her all day, it is the wrong thing to do, but if I don't feed her when she wants it, it is the wrong thing to do. I spoke today with the doctor that is the head of Children's Oncology at Backus and his son was treated for ALL when he was 3. He said that all of these things are very normal for her age, and that there is no way to control the eating or temper on this medicine. The good news is that she only has to be on it until Dec. 18th and then she gets a break. She will have to go back on it at a later date, but not for as long. Pray for patience for mommy, daddy, and Cade until Dec. 18th. After that she will begin the consolidation phase of treatment. Next week we will find out which risk category of ALL she falls into (high risk, standard risk, or low risk). Pray that she falls into low risk. Then from there we will know her exact treatment plan for the consolidation phase. This chemo thing is really complex and we are learning a lot. I am so thankful for the doctors that pour their lives into finding the best treatments for Leukemia. Thanks for checking in on us! Pictures of our little swollen patient coming soon...