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8/29/05

8:30 PM: Sophie is asleep, Susan is picking up Elisabeth from dance class (I expect them any second), and I'm avoiding finishing up my term paper from last semester. The deadline to get it in is Thursday, so I'm slowly working up to panic mode, which will probably get me motivated since nothing else seems to at the moment.

Susan was at work today, so I was at home alone with the Sophster. Today was a pretty good day, although words cannot describe how thankful we are that tonight's dose of dexamethasone will be Sophie's last for this phase of chemotherapy. Sophie is so physically uncomfortable and without joy or vitality that it has become really, really hard to be around her.

She is still our Sophie, but she has become something/somebody different entirely. Her weight gain has so radically changed her appearance that it's almost like it's not the same girl. The elastic on the nightgown that she wore to bed last night was cutting into her arms today, so I put her in a dress. A size 5. She has trouble getting around (maneuvers up the back steps like a very little old lady--if she makes it up the steps at all). She rarely smiles, and when she does, it almost looks like it causes her pain to do so. She has little to no interest in just about anything, and whatever interests her does not hold her interest for long (books, TV, I would add toys but she hasn't played with anything for days).

The sole consolation through this phase of treatment has been that it was temporary and one-time-only. I am really thankful that we did not understand or appreciate how difficult this round would be, because it would have been hard to start it.

But tomorrow is a new day, and it will be a day without steroids. Sophie will continue taking an anti-fungal and Nexium (for reflux caused by the steroid) for another two mornings. Thursday morning, she takes no medicine at all. I'm hoping that over the course of this week, her appetite will return to normal, she will lose some of the weight she has gained, she will start sleeping through the night, she will not fly off the handle over the tiniest little things, she will smile and laugh and giggle and play, she will be able (and will want) to dance and run, in short, I look forward to having my little girl back. I imagine she will be glad to be back as well!

Comments

I hope today is a good day for all and that the steroids are quickly clearing out of Sophie's system. It must be very confusing for her to have her body be so strange.

Mom is doing well, and has decided to try to move about more and to eat more -- after a serious talk we had about her weakness and what she could do about it.

Hugs and kisses to all!

I am sure everyone in the house will be glad that this phase is soon going to be in the past. I hope that everything will return to normal, as much as it can, for you guys. This seems to have been a very trying time for each of you. Thank God you are taking each day one at a time and looking for today to be a great one!! You are doing a great job, although I'm sure there are days that you question yourself. Keep hanging in there !!! Love and Prayers Deanna

We love you and pray for you each and everyday!
Sabine

Susan and Randall,
I just got back after being out for a week doing last minute cramming for my licensing exam, which I took Friday. Just finished catching up on all of your adventures over the last week. What a relief that Sophie is off of the steroids! How uncomfortable for her, and so difficult and sad for all of you. I'm hoping that things will be improving rapidly over the next week - don't know quite how long it takes to fully recover from steroids, but hope that you at least get some relief soon! Glad to hear that Elizabeth is so happy with school this year. I had to laugh when I read about Randall's procrastination, and the need to get into panic mode. That seems to be my style as well. At any rate, good luck with finishing up the paper, and wishing all of you a much better week.

Regards,
Heidi

Susan, Randall, Elisabeth, and Sophie my thoughts and prayers are with you each and every day. It breaks my heart to see Sophie but I am thankful that we have that opportunity. I'm just waiting for the day she comes bounding in the church smiling and full of "Sophie energy." Ms. Frankie assured me that it would be soon. Love to you all!
Shannon