October 21, 2009

No news is good news

I'm sorry that I haven't posted anything in so long. I'm feeling guilty about abandoning Mad Madam Madeleine, but I really don't have much to say. I never intended to be a "blogger," nor do I now consider myself in that category. If I have a picture, video, or story to share, I will continue to share it here, but I am not going to make myself post things on any kind of a schedule. Of course I will continue to share any medical updates.

Mad's latest VMA/HVA levels are a wee bit higher than they were last month, but our doctor assured me that this is still in the standard deviation for the test, and they are still considering these numbers stable. Standard deviation or not, I hate to see any increase in numbers. I'm hoping they will be back down to previous levels next month. HVA is 45.3 (up from 37.2) and VMA is 31.9 (up from 29.2) for those of you playing along at home. To be cancer free HVA should be no higher than 23 and VMA should be no higher than 18 based on Madeleine's age and weight. When she was first diagnosed, her HVA was 88, and VMA was 133. Wowza!

My friend Andrea showed me how to put pigtails in Mad's hair.

She sleeps like this at every nap and bedtime. Isn't that weird? Ryan sleeps like that too.

You may notice from the picture above that Mad is now in a big girl bed. These past two weeks I've been working on painting and decorating her room. I'm thrilled with the way it's turning out. I'll take better pictures of the whole room soon.

October 3, 2009

Stating the Obvious

Things have been really good lately. Madeleine is happy, our days are busy, and we are leading a normal life with very few doctor and clinic visits. Mad's physical therapy went so well that she completed her final session this week. Her therapist is positive that now that she is bending her knee, the only thing left is to continue to build strength in her leg. And we can do that at home. She is continuing to love her gymnastics class (especially since her buddy Cade goes now too!), and we have started swim lessons again as well.

Her latest VMA/HVA markers are pretty stable, not going up, but not going down either. The tumor is stable, not growing. She won't be deemed "cancer free" until her markers are back in the normal range for her age. We know that this is just a matter of time until this happens. We are continuing with monthly clinic appointments to test the markers, and MRIs to check the tumor every three months.

So, things are going well, things are moving in a positive direction. After the horribleness and uncertainty of last year, this year has been positively wonderful.

Then why do I feel so bitter sometimes? I can't really explain it. September - which is Childhood Cancer awareness month, made me angry. This happened to me last year too. The only company (that I know of) that does anything in support of Childhood Cancer awareness and funding is Chili's. Meanwhile, there are pink ribbons on my grocery store yogurt lids and mushrooms halfway through September. Mushrooms. I'm not trying to take anything away from breast cancer awareness, I think it's fabulous that so many companies and organizations are supporting and donating to such a worthy cause, but I'm a little jealous. Where is the support for childhood cancer? These are our children, and two classrooms-full of children are diagnosed every school day.

On a more personal level I've noticed that I feel anxious every time a friend's baby is at or near the four-month mark (when Madeleine was diagnosed). I can't figure it out. I'm not worried about their children, I just feel anxious. It makes me want to tell them all about Madeleine being diagnosed and what that time was like. We were at a wedding recently and a college friend was talking about how his four-month old doesn't sleep. I sympathized with him because we had the same problem for many, many months, but in my head I really wanted to say, "...and four months is when Mad was diagnosed, so...[shrug]" I even thought of the gesture that I would use to convey this message. Am I just being selfish because I want everyone to keep remembering? Am I looking for sympathy? I don't know. I don't have a better way of describing this. Also, we would like to have another child eventually, and the other night thinking about that hypothetical child as an infant brought me to tears. Not because having a newborn would be difficult (it would be), but because that baby would eventually be four months old and I would have to deal with that. Is this post traumatic stress disorder?

All of that said, I'm pretty happy. The moments mentioned above are just moments. And they aren't consuming my life, or making me crazy. I debated about posting this because I don't like to share too much about how I feel, and because I don't want you all to think that I'm crazy... maybe just a little damaged :)

I'll leave you with recent pictures to lighten the mood in here:

Early birthday present from Grandma and Grandpa!

Madeleine and her friend, Sophia, at the zoo.

Trying out the Halloween costume