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5:00 PM (Susan posting): This is hard. Having Sophie be on steroids again is hard. Trying to manage the life that has gone on around us while Sophie is on steroids is hard. All things considered, I think she's doing well, but it's just challenging to see her so affected by the medication. The doctor says she's likely to lose all her hair during this phase, and that just makes me sad on so many levels. A bald child is such a visible reminder to us and others that she has cancer. It's nice to be able to go out in public now and not have to explain to everyone we encounter what the situation is (or to have them openly stare and say nothing). Perhaps it's just denial on my part, but the fact that she's kept so much of her hair is somehow comforting to me (perhaps on some level it makes me think she's strong or her body is better able to tolerate the medications), and to have that go away is scary.

Sophie's behavior while on steroids is very similar to how she was in the first few weeks after she was diagnosed, so it brings all kinds of old emotions back to the surface (for all of us, I guess). Steroids also make Sophie more demanding (and we've got two kids at home until the end of the month), so whoever is home with the kids during the day generally feels pretty overwhelmed, epsecially if there are demands and tasks other than childcare on the agenda for the day. With my recent trip, all of this has fallen to Randall (at the same time that there are a fair number of church meetings and he's trying to finish off that paper). I worked just a half day today and will stay at home tomorrow, but I don't know how much that will undo the stress of the last week.

Things should ease up in the next day or two. We realized we have another opportunity to visit my mom and grandmother before school starts for Randall and Elisabeth, so we're going to head up there on Wednesday after Sophie's treatment (assuming we can manage to get loaded up in reasonable time to make it to the clinic). It will cut off over an hour of travel time to leave straight from Chapel Hill. We'll have to return Saturday to be home in time for the Sunday service. This will probably be our last opportunity to visit until Christmas break. Mom suggested that we leave Elisabeth with her when we come home on Saturday and then she'll meet us at clinic the following Wednesday (she has the week off). She's smart!


Susan, I'm sorry that you are struggling right now. Some of the issue is balance, some of the issue is that your like has been changed in such a way that it will never be as it was before (you will no longer take health for granted, as an example), some of the issue is that you have feelings and emotion that are asking to be dealt with that are painful and somewhat threatening to your emotional security as well as the notion that has been violated that life is supposed to be fair. I learned a long time ago that life isn't fair, but that doesn't lessen my desire for it to be that way. I learned nearly as many years ago as you have been alive that life is very very fragile and needs to treated with love and respect and great deal of appreciation. M. Scott Peck got my attention in the book "The Road Less Traveled" when he started it by stating, "Life is difficult." There are days I agree with him on that issue 200%. Joyce Meyer, on the other hand, says that is a negative confession and we are better served to look for the positive things and take the rest to the Lord. Sometimes that is just easier said than done.
I have not taken Decadron, but I have been on Prednisone at some higher end doses from time to time in my life and for extended periods of time. For me, I got the euphoric reaction rather than the depressed reaction to the drug. I felt GOOOOD! It releived many things that I had forgotten didn't feel well when I took it. I did become moody when the dose was weaned, and I am sure that was hard on you dad from time to time. My observation is that the dose Sophie is on isn't high enough to give her "that good feeling", so she only gets the moody and crabby feeling that I got when the dose was weaned. I think that the drug is a good one, but it does have some unpleasant side effects for all involved. I do hope that you have some Zantac that you can give her daily because I know that it increases reflux both from personal experience with steroids and from watching the babies we infrequently give Decadron to. To turn the Decadron into a praise item, I am thankful that Sophie has only needed to take steroids twice during her course of therapy thus far.
I fully understand your feelings about Sophie's hair. I believe that she hasn't lost all of her hair earlier in the therapy is because the Lord has blessed her with SOOO much hair. I know what it is like to see children and adults without hair, to see it start to grow back and then thin out again. I agree it is a vivid reminder that all is not well, that cancer has been present, and according to our culture, not normal to see people without hair. Although lately, I have seen both men and woment with shaved heads that had nothing to do with chemotherapy. Dr. Gold may be correct in that all of Sophie's hair may disappear this round of chemo, but we don't have to come into agreement with that. We can confess that Sophie's hair will remain as it is. Medically, I can tell you that this phase of therapy is even more agressive than the others - an I thought all of the others were pretty agressive. I can tell you medically, that hair loss is the side of effect of most of the chemotherapy agents. However, God is greater than all of those things. I think if you want to ask the Lord to spare Sophie's hair, He will understand. Goodness knows, I ask Him where I put things down sometimes when I can't find them. Sometimes He is quick to answer, and sometimes I have to wait a long time to find them. One time it was months before I could find your dad's PHD diploma. I will pray in agreement that Sophie's hair is spared, if that is your desire.
As far as Sophie being stronger, etc because her hair has been spared, I think it has been spared because of the grace of God and the fact that she has always had so much of it. To my knowledge, there is no relationship between the amount of hair loss and the effectiveness of therapy or lack there of. I think that people respond differently to medications and that some are more sensitive to hair loss and other are not.
I have nothing to offer you regarding balance in your life. I struggle with that issue frequently. Seeking the Lord for guidance would be the best thing I know to do.
I suspect another issue is control. There are certain areas of your life right now that you have little to no control over. That is true for a lot of people, but they don't realize it. You do. You can not control people staring at Sophie, but you can control your response. You can choose to ignore them, educated them, tell them to drop off the face of the earth (if this is the option you choose, I have at least one person that you can add to your list to tell that to!), etc. You may find that you have other responses that come to your mind also. You may also find that you need to vary the response depending upon the situation. You need to take comfort in my favorite quote from the scripture, "and it came to pass". (I think that is only found in the Old King James, but it is reassuring sometimes to know whatever trial you are presently experiencing, it will eventually pass.)
I am sure I have exceeded your attention span as well as other who read the comments. Sorry. Know that I love you, understand your pain and frustration, and even share some of it too. Hugs and kisses all around. Love, Eileen

There are two people and one cat who are waiting for you with open arms and hearts. (Well, maybe the kitty is a little less eager to have people in HIS space, but I know he's happy that Mom and I are happy!)

Remember you are all well-loved!

hello, I've been visiting your website even before little Sophie was born and I feel so sad about what's happened to her, children should be illness-free. I'm sending you guys positive energy and I hope Sophie gets better, she's a delightful little girl. God bless her.

Hi Susan - As usual, words fail me, but I want you to know that you are all in my thoughts every day. Gwyneth

Seems as though you guys are dealing with so much, and our help is so limited. I truly feel that during these times we simply could later look back and say we were carried thru them. Thank God for His promises of never leaving us alone. I hope that all goes as good as treatment possibly can during this phase for Sophie and for all of you.I hope Elisabeth is getting excited about returning to school, it is almost time. Love and prayers to all. Randall and Susan you guys are real troopers, hang in there. Deanna