Thursday, July 3, 2008

Her sickness or my mania - you pick

Ah, good morning. I have been sitting here for quite a while trying to figure out what to write. There are, of course, 1000 things I could be telling you about. I could tell you about our plans for the 4th of July parade or, even more interesting, about the fact that on Monday, Lynley's Birthday, Sydney will be leaving for a week to Camp Sanguinity. I could tell you that Sydney went to the dentist yesterday and that she is missing a tooth (canine) that never came in. I could also finally write about ABT-751 and its combination with Fenretinide. I could probably even apologize for how technical my talk about Fenretinide was. For fun, I could even tell you all about the neat things I am working on in the world of neuroblastoma. But, as exciting as all of that could be, it is not what I really want to talk about.

You see, I am still on this Sydney "not feeling well" thing. By the way, this is how manias are started. Regardless, it is probably the most interesting subject to me. I received some helpful advice from an anonymous poster to my blog. It is nice to know that we have a social worker in our corner. For better or worse, we need it. I guess we probably all do. Raising kiddos certainly travels the razor's edge between complete joy and utter madness.

So, here is what happened yesterday. Yesterday, after Sydney woke up complaining of lethargy and feeling sick I had another heart to heart with her. Ironically it followed along much of the same lines as my anonymous poster suggested. I told her that if she felt that sick she needed to go back to bed were she would stay the rest of the day. I also used some bait. I told her that there were some fun plans for the day and it was sad that she would be sick and miss it. Within minutes she experienced a full recovery and, crud, I was left having to plan something special. (I hate when I do that.)

On the way downstairs I had another heart to heart with her. I really wanted to get to the bottom of it. I felt she needed a more thorough discussion on telling the truth about how we feel. I felt this was as good an opportunity as any. Besides, she is now more capable than ever to have this particular rational discussion. I explained that I wanted her to be honest with me. I told her that if she wanted more of my attention (or Mommy's) that she just had to ask. I explained that if she just wanted to lie in bed because she had not woken up or because she was lazy that she needed to be honest with us. I explained that telling us that she was sick when she wasn't was wrong and very bad. I explained that if we gave her medicine for a sickness that she did not really have that the medicine could actually make her sick. I explained side effects in a way that she could understand. Some medicines make you sleepy, some make you sick to your stomach, and some even make you lose your hair. I was very careful in my explanation not to scare her but I wanted to drive the point home. I wanted her to understand that faking an ailment was not the answer. By the look in her eyes and her feedback I was confident that she got the point. She understood. She also came clean about some of her past "sicknesses."

At the last minute we lined the kiddos and Miss Claudia up to head out to Pump it Up for a morning of fun running and jumping through the largest collection of bouncy houses and inflatable obstacle courses I have ever seen. They spent over 2 hours wearing themselves out. It wore Ainsley out so completely that she ended up sleeping for the last 45 minutes or so. In the end, Sydney made it through all of the play but ended up busting her lip up pretty thoroughly in the last 10 minutes. Other than the necessary kisses and an ice pack Sydney was fine when she got home. Ainsley's temperature, however, was creeping up. I am guessing that she has not fully recovered from the day before. Graham, as usual, was just happy to be there. We put Graham and Ainsley down for a nap and Sydney continued to play and read the afternoon away.

By evening, Sydney was complaining about being tired. That was not something that sat particularly well with Lynley or I. As Sydney talked about her day she kept mentioning how tired she was. It left Lynley unsettled and me curious as to whether or not she was replacing sickness with tiredness. To be honest, I like the tiredness even less than the sickness. It will be another day of identifying what is going on. I am hopeful that after a full night's rest she will be ready and raring to go. It will be interesting to see if she is so high energy again. Was she tired from all of the play at Pump it Up? Was she tired because she was sick? Is she tired because she wanted to snuggle on Daddy's lap? I don't now the answer. I do know however, that lethargy is also a side effect of cancer.

We need a break from these constant ailments, owies, and lethargy.

I will be sneakily purposeful today.

1 comment:

Catherine said...

Oh, Mark, the problem with kids who have been through so much severe medical treatment is that they often do not feel well. They manage to cope with it by not thinking about it, being distracted from it, forgetting about it, getting used to it.
One of my kids was saying that he could not read in the car as it make him feel sick. My cancer survivor, said that he feels the same way alot, but he's used to it, a surprise to me. He has learned over the years to NOT bring up any aches, pains, tiredness or other symptoms when he wants to do something, go somewhere, or plain does NOT want parental scrutiny. That can be as bad and frightening as a kid who is constantly complaining of not feeling well.So it's often difficult for the kids themselves to discern whether they are feeling the regular blahs and aches or if this is something unusual.
My oldest who is was a national athlete has a friend who nearly died from appendicitus. Those kids, too, who push their bodies unnaturally in sports, get used to pain to a point that they learn to ignore it. They feel lousy, tired, pain, don't feel like it, so their thresh hold is way up there.

I hope your sweet Sydney feels better, and reaches an equilibrium that she knows is a normal range for her. It would make things so much less stressful for all of you.

Prayers and hope.