Phoebe is in this hospital this weekend for chemotherapy and will finish up this round on Tuesday. So far she is handling the chemo well, but she has been quite moody and emotional this time around.
The tough news isn’t really new news, it’s just confirmed news. Phoebe’s brain no longer registers that she is full. She is always hungry because her damaged pituitary gland no longer recognizes satiety. Imagine feeling hunger ALWAYS. And never being able to satisfy it although you eat constantly. This is Phoebe, and barring a miracle, this will be a way of life for her.
Phoebe experiencing constant hunger is one of the reasons she is up during all hours of the night. She usually wakes up every 30 minutes to an hour asking for food. If we say no, she weeps, so we usually try to re-direct her and get her to focus on something else. She plays Angry Birds on my Nook, or she plays with her tea set, or sometimes she can be sung back to sleep for a bit, but she doesn’t sleep for long because hunger gnaws at her constantly.
If we do not maintain tight control over what and how much she eats, she will be obese. She also must take steroids for the rest of her life because she does not produce cortisol and this of course compounds the problem. Add to that, that she no longer has a thirst mechanism, and we have a perfect mess. It is overwhelming to imagine her suffering from constant hunger for the rest of her life…and having to make herself drink although she feels absolutely no thirst. She will have to learn self-discipline in a way most of us will never have to. Oh Phoebe…
And it’s tough. It’s tough not to give the girl a cup of Cheerio’s at 3 am when you are exhausted down in the deep of your bones and she is crying for the 14th time that she is hungry. We bring carrots: crying. We bring apples; crying. We bring Cheerio’s; silence…crunch, crunch, crunch and we get a little bit of sleep. For an hour or so.
So, although we knew it was probable that this was the issue, hearing it confirmed today just made it sink in anew. Please pray for her and for us to have wisdom.
Also, Benjamin is sick right now and could use some prayers.
Thank you for holding us up,