Thursday, March 25, 2010

The Results are In

Monday was what shall henceforth be referred to as Scanfest.  It involved 2 hours of prep, 2 hours of scans and 2 days of worry. Lily impressed us by exhibiting about a quarter of the stress level I felt. Phil offered to take her so I could clean. Basically, so he could read Sports Illustrated in quiet for a couple of hours. He's seen me at these things and realized that I could better channel my nervous energy around the house as opposed to wearing a new path in the halls of radiology. I refuse to leave the waiting area. What if she needs me? Instead, it is much more productive for me to remove all the drawers in the kitchen- empty and clean their contents.  One would suppose that simply doing routine cleaning would suffice, but one would be wrong. Such routine work would leave portions of the conscious mind available to wander to what ifs.  Doing a spring cleaning maneuver such as total drawer removal in conjunction with keeping Bella entertained definitely passes time most efficiently.

Lily did much better with the anesthesia this time. We didn't super stress dose her with steroids- because Phil and I both suspected this was one of the main causes of her post sedation rages. It worked. She woke up happy. It could have been that she was sedated so much longer this time, that the meds were able to wear off a little better, but we shall see. Unfortunately this will not be our last set of scans. I am hoping to try it without sedation soon to alleviate some of the levels of nasty meds we keep pumping into her.

She had a full body MRI series with contrast- brain, spine, everything. She then had her routine abdominal CT series.  The doc called Phil last night and reported that he went over the scans with the radiologist and the only oddity that they could find was that she was missing an adrenal gland. Phil and I said the same thing....just one?  She had the right one surgically removed- and the left one had essentially disappeared as of the last scan due to chemo. There was not much to it, but they could see it.  Another one of those double edged swords...if it grows back- she may not have to be on as high doses of maintenance steroids.  But if it grows back, other things might as well.  But that is something we will just wait and see. The good news is that for now, her scans are clean.  We carry on. 

Specifically I focus on preparing for the dozen or so little monkeys who will invade my home Saturday for the big birthday celebration! Someday I will get more pictures downloaded!

Friday, March 12, 2010

It's funny how you think you are getting back to normal and then a few things happen that convince you that you aren't as far along as once thought....and that wasn't too darn far to begin with. 

We had Lily's check up last week. She is doing great and treats these appointments like mega visiting hours at the hospital. The biggest problem was that we had to get her caught up on vaccinations, which meant 5 shots. In addition to her port access and flushing. Even Lily was like"cant they put those(vaccines) in my port?? Poor monkey.  But 5 down 2 to go. The nurse even said- you all are in here often enough, we can do a few at a time for the next couple of visits. I said- um no, we'll knock out as many as humanly possible today because I'm gonna have to drag her in kicking and screaming next time. Lily took the first shot like a champ and then as they get the second shot ready, she says "I think I'm good, we can do that one next time". 

SO we are gearing up for her next round of scans. They will be on the 22nd and this will be the full body MRI. Her sarcoma took a back burner to the adrenal tumor, now it's time to make sure there are no signs of metastasis or recurrence. We don't expect to see anything, but it's stressful until we get the all clear. This is the new normal. Phillip had some headaches last week. Which of course, concerns me. I need to get his eyes checked, but now he has a runny nose- which is actually a relief because I know that they were sinus headaches. One night, I was making dinner after basketball, which is generally when he has the headaches. I think it's the big grassy field....and he quietly says -Mom, you don't think it's a tumor do you? -And that is our new normal. My heart broke into a million little pieces. I let the dinner go and had a chat with him and reminded him that we just scanned his brain and it looked great. He had forgotten, he was relieved.  It's this weird place where I want them to be cautious and understand they have to pay attention to their bodies signals, but I am terrified that they are going to live in fear and when you live in fear, you forget to live.

So I had a girlfriend the other day who was traumatized by her daughter's bad haircut. We've all been there. The bad haircut, not necessarily the trauma resulting from it.  I had mine when I was 5. I wanted the Dorothy Hamill haircut that was all the rage. That is right up until I saw it in the mirror. It felt wrong, it looked wrong and I hated it. I sat and cried on the bathroom counter. After that, a bang trim was a stressful event.  Until I was in high school. I had a bad perm that was the result of my hair being waaay too long and the stylist being waaayy too inexperienced. I ended up with shorter hair and months of intensive conditioning treatments and I learned a valuable lesson. Hair grows back. I watched my dad and brother lose their hair clump by clump going through cancer treatments.  It felt pretty vain to vest all your interests in something like hair. 

I have always cut little phillip's hair at home. I used to cut Phil's brothers hair, and really it's not a big deal. No it doesn't always look professional, but then again- it grows out and you try again in a month. Phillip doesn't so much enjoy being the hair dummy.  This stems from an unfortunate incident when he was 3. I had been halfway through cutting his hair when Kiera came bounding through. I had just taken the #2 guard off and was going to put the #3 guard on for the top. I tended to Kiera and went back to finish his front. Yeah- I took a 1 inch strip of hair off the front, with no guards. He had a bald spot.  Not only that, it clogged the clippers. I dragged him down to my friend's house to borrow her clippers and the resulting "do" was very high and very tight. He looked like a miniature marine. With a bit of a bald patch in front. He was miserable. But guess what? It grew back.  SO I could relate to my friend's experience, but not the 2 days worth of ranting over how her 3 year old's self image was destroyed.  The only way a 3 year old's self image(of which they have very little- I have found.)can be destroyed is if you convince them of it. They have very little theory of relativity. Example #1: 3 year olds believe magic markers to be an acceptable substitute for make-up.  Example #2: If allowed to dress themselves- 3 year olds will pick their 2 favorite pieces which will happen to be a crazy floral print skirt in pink and a polka dot shirt in the hues of green, yellow and blue. Example #3: 3 years is the age generally that kids take the scissors to their own hair resulting in learning one of life's biggest lessons- never cut your own hair. Or let a 3 year old cut hair. Basic stuff.  If a 3 year old thinks she looks ugly because of a haircut, it is because someone reacted to the haircut in such a way to convey this. Of course my biggest disappointment was that all the hair that got chopped off probably could have gone to an organization called Locks of love that makes wigs for kiddos with alopecia.

I was so worried about Lily when her hair fell out in chemo. Her big hair was famous. Yet the people it was hardest on was me and Phil. She was cool with it- after all she and dad had matching haircuts then. She hardly ever wore hats to cover it and wasn't bothered when you touched her noggin. She periodically asks me to cut her hair like dad's again, and I refuse. If for no other reason than 3-4 year olds tend to be impetuous and they tend to make 3 year old decisions. So needless to say, I have a slightly different perspective when someone complains that the bob and bangs weren't what they wanted. In Boulder, every March they do a St. Baldrick's fundraiser to benefit childhood cancer research. People donate what they spend on a haircut(which is a lot of money these days) and the good sports get their head shaved.  My good friends go on over every year- it's a cause near and dear to their hearts as their son had cancer too.  He recently went in for a check up and they found nodules. And part of me knows that one of these times when we go in for scans, it could be us.

So this is what I try to remember: Don't sweat the small stuff.  A bad haircut isn't the end of the world. There are many moms out there watching their kids lose hair clump by clump who would love the luxury of giving their child a haircut versus shaving it off so you don't have to watch it fall out bit by bit. And there are many moms who have lost a child who would give every last inch of their own hair to run their hands through their kiddos hair one more time.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)