Long Term Effects Of Cancer

A friend just posted a quick note about seeing a mom with a lil cancer fighter on her lap at a school event.  I am not surprised by my reactions, yet they always surprise me. It was equal parts saddness, nausea and relief. I am sad that any child, any family has to go through it- it is not fair. Sad because I know how serious it is and if the disease doesn't kill them, the treatment might. I was nauseous because it's still fresh enough that I remember the stress, the day to day ups and downs and the gut wrenching emotions that you shove to the side just so you can get through.  I feel a bit guilty to admit that I was relieved. Relieved that the memories that sting now are just that- memories. I actually don't think about the what if's too much. Just enough to formulate a basic survival plan- but the thoughts themselves are toxic. 

When people we haven't seen in awhile run across us- the first thing they ask is - How's Lily? Lily is fine- it's the rest of us you should worry about.  I see friends with their out of control children- hopped up on psychotropic meds for behavior problems.  They are searching for answers in all the wrong places.  I think back to a time when I had to choose the lesser of two evils- taking the chance on cancer killing her or the chemo meds and their long term effects. One drug causes deafness, the other heart deterioration, the other can cause secondary cancers, the alternative- death. Not much of a choice. Yet I know parents who have their kids on cocktails of meds because they won't sit still or listen to them. We won't mention how the protocol for treatment requires CT scans every three months and by nature of our genetic mutation- the radiation from the CT should be avoided if at all possible.  Catch 22 much? 

I asked the doc once about long term affects(effects?) potAto pOtato. His response in a nutshell included the pearlly wisdomous bite- not many kids with this tumor type survive long enough to gather data on the long term effects- there will probably be some.  SO when you look at it all big picture-style- you come away being grateful for the imperfect package you have been given- because some people don't get a package at all and you know darn well far too many get awesome deals and don't even appreciate it.

 I sit here watching Lily play Barbies- Currently Barbie is getting ready to invite Ken to her Birthday party. They will fawn over each other, they will dance and then they will kiss.  Her Barbies seem to do that a lot. I started to worry. Is it hormones, should I get her checked- is she having changes?  And then I thought about it- when I was 5. And 6, and 7- Barbie and Ken(which often times was substituted with a GI Joe doll or a more appropriately sized A-team type doll) I re enacted their wedding scene over and over and over. I saved for months to get Crystal Barbie. Her dress looked just like an iridescent shimmery wedding gown. They would wed- go to sleep and in the morning Barbie would have a baby. For awhile it was a mini Baby doll and then finally I procured a miniature baby out of a gumball machine. Really- how important is scale in make-believe land? The point is- she's playing normal and despite my first instinct to over react- I take a minute and realize we are on an appropriate course.

Sure she can be rambunctious. And she can be manic. And she tends toward roid rage at times. But I remember Lily was a less than happy baby with rage tendencies.  Everyone else thought  she was so darn cute and happy, I consider the fact that maybe it's just her personality.  Yep- we called her Bi-polar baby. I admit it.  But there is no way of knowing the cause. I don't even know if it's that important- if I spend less time worrying about a cause I had no control over and spend more time teaching, mentoring, and behavior modifying- the result should be a functional bipolar child. We spent all this time worrying about her being normal, acting appropriately, and fitting in when it occurs to me- all 5 year olds are Bipolar. They are ADD. They are ADHD and oppositional defiant. They talk to people no one else can see, or hear. The have intense moments of rage and/or depression over trivial items.  And they totally sing off key. Lily's missing the higher frequencies of hearing- what are the other kids' excuses? By all counts- not only would they get booted from American Idol in the first round- according to the DSM IV they should all be locked up in maximum security psychiatic facilities for observation. I don't think the kids are getting crazier- I think we are.

The daily reminders of our year long vacation at cancer camp have become routine. It is more like brushing teeth now. They're about as painful too. Lily- did you put your hearing aids in? Lily ,did you hear me? PUT YOUR HEARING AIDS IN! Even the kids chime in- what are you, deaf? Everyone laughs. Especially Lily.  Just like we laugh at  Kiera's weird thumbs and Bella's ginormous butt and Phillip's abnormally long torso. None of these things can be helped, they are who they are and at some point in their life someone will point it out. Now they can laugh at it and move on. It's not so much about making your kids perfect- it's about helping them love their imperfections. Do I love my big butt- well not always- but I found me a man who does....and that my friends is how you deal the cards you are given.

Everyday Lily takes her meds and I have to prepare her school and our friends for emergencies. I didn't think about her playing soccer and the can of worms it opened regarding potential injury. Not only can she not wear her medic alert bracelet at the game- she might actually get hurt. Her coach works 3 jobs and coaches 2 teams- so practice has been less than consistent. Before I know it, we are to our first game and I never told anyone that she is adrenal insufficient. No one knows what it means and it's a bit of a pain to explain and when you start mentioning unconsciousness and shots- people get all wonky. I tackle the conversation with the team mom and she is very supportive. I never plan on sending Lily to a practice or game without my being there, so it's not a problem. Until her first game. Which fell on our anniversary.  We are going to be on the other side of the island. I have all the ducks in a row, everything is in place. I nervously text our sitter every 5 minutes during the game. All is well- she did great- she scored 3 goals and had fun. When I get home, we watch the 13 seconds of video from the game. It's not a lot- but I rank care and keeping of the magical creatures over photographic evidence- and all were cared for very well. I notice that she skips up and down the field. I laugh- because that's Lily. La de da. I show Phil. Yeah-he says- I noticed that at practice too. I wondered if she would have any long term effects from the leg surgery- but she adapts well. 

It hits me suddenly, I hadn't even thought of that. I am overcome by the familiar feeling of saddness, nausea, and relief.  I hadn't attributed the skipping to her leg surgery. I just figured it was her. Maybe it is.