Two Months After Treatment

From James:

First of all, the kids are great. Their parents are still learning to be parents, but the children are doing a stellar job. They have a new routine that involves a great deal of Daddy and Nanna time, which the girls don’t seem to notice all that much but Mom and I enjoy. Lindsay had to drop ballet when So Young was first diagnosed almost five months ago because of the crisis of the moment, but otherwise they continue with their activities and are doing well socially and in school.

Sensitive and volatile, Lindsay was the one we were most worried about early on. Much has improved. Mom has taught us a lot about how to respond with the right amount of structure, discipline, and compassion. Although she isn’t doing ballet now, she is the most active of the girls, as part of the running club,  piano, and chorus, and volunteering at the school library three times a week. Here is a picture of Lindsay at last week’s chorus concert, smiling because music is her gift.

Lindsay at Chorus

Shannon continues to be bright and ambitious, constantly reading and laboring on her many writing projects. She will not settle until she is a real “published author” (no vanity press, mind you), and I believe that given her talents and drive, she someday will be. Also, her sense of humor is incredible: She laughs at my jokes!

Audrey is a typical kindergartener, except that she was born with the “Command Gene” and is pretty sure she runs the house. She isn’t afraid to talk to anybody or tell them what to do. This is counter-balanced by her calm, levelheaded constitution and enthusiasm for housework or work of any kind.

All of that is to say that the girls are fine. They don’t ask too many questions about Mommy. They pray for her. Outwardly, they don’t seem worried. They are mostly concerned about her loss of eyesight, which has direct, practical implications for them. Shannon has asked some more penetrating questions. I can only respond by saying we don’t know the outcome and therefore can’t assume the worst about tomorrow. Today has enough worries of its own.

So Young weaned off steroids entirely a few days ago after a previous, failed attempt to do so. Now she is getting headaches again. I called Johns Hopkins yesterday afternoon. They said it could just be a symptom of a sort of withdrawal from the steroids themselves, like when you stop drinking coffee and get a headache. They decided we should wait over the weekend and see if the headaches get better. If they got worse, it could be edema (swelling of the brain), caused by either the radiation, although it seems too far after the treatment for it to be that, or the tumor itself.

Last night, a few hours after I talked to JH, So Young appeared to start developing one of the very severe, throbbing headaches that is a sign of edema. We have been through these before, and they are a nightmare. I didn’t want to mask the headache because I wanted to see if it really was one of the “big ones,” but I also couldn’t stand to see her in so much pain, so I gave her Motrin, and it went away. The bottom line is that she may end up back on steroids or, eventually, with surgery to install a shunt, as I’ve said before. Please pray for So Young, as these headaches are painful and scary for her.

I was talking to my friend KT the other day about how I’m surprised that I’m not more emotional about this situation all the time. Yes, I have my moments, but for the most part, I try to be objective and clear-headed about it. I speculated that it is because I can get highly compartmentalized: strong emotions over here, practical, “get it done” mindset over there, and never the twain shall meet. Hilariously, KT suggested that I get another compartment to mediate between the other two.

So while I would ask that you pray that I get another compartment, I’ll just ask that you pray for wisdom and a lot of strength.

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2 Responses

  1. James,
    Your wonderful mother is not only a blessing to your family, she is a joy and a blessing to many others as well. She continues to lead her BSF group with the love and gentleness that are so much a part of who she is and she has a long list of people for whom she prays.

    I will continue to pray for So Young and I will pray for wisdom and strength for you. I think it is great that you can compartmentalize!

    • Barbara,

      I have to tell you, your comment about compartmentalizing made me laugh! That’s great. Thank you.

      Mom really is amazing. She has given so much to us and so many other people over the years. I owe her my very life, of course, but feel such a great debt to her because of how she has sacrificed for us. She’s truly a woman of God.

      She speaks highly of you as well. Thank you for being a great friend and encourager to her.

      James

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