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

6 comments:

Bree said...

I can totally relate. I want to tell everyone my story and about the fact that you can still lose your baby after the 1st trimester. Mad looks adorable in her Halloween costume. What a cutie!

Jenny said...

I was going to say exactly what Bree said as well- I totally relate because every time somebody has their 20 week ultrasound I become anxious and part of me wants to tell them about how that was when I found out my baby wouldn't survive...but I know it would be totally inappropriate to do so. I think it's almost like post-traumatic stress syndrome!

Becky said...

Glad to hear things are going well and hopefully your anxiety starts to go away a bit. I know it's always a bit in the back of my mind, along with all the other things at different ages that have happens to kids of friends of mine. I think it's true, ignorance really is bliss, and parenthood is no shortage of tears and horrible fears, but luckily there's smiles and laughter too :)

Kristen said...

Amber - I also struggle with the fact that Pediatric Cancer Awareness Month is the month before the "Mother-Of-All-Awareness-Months" ... October. I feel like we get completely overshadowed before the calendar even turns to October! I saw so many pink ribbons last month, and although I did go to Chilis, where were all the gold ribbons? Where was the coverage in newspapers about events going on? I don't get it.

And I don't think your thoughts makes you sound crazy at all! I can't fully relate, and I'd never say that I could (because I don't even have children, let alone one with pediatric cancer), however I somewhat know how you're feeling. I babysit a lot, and when one of the toddlers I sit for limps a little, or has a low grade fever for a few days, I get nervous too...

I recently wrote a very loooong research paper titled "The Psychological Effects of Pediatric Cancer on the Family" and read a ridiculous amount of research on how having a child with pediatric cancer can affect each member of the family. Much of the research has shown that many mothers experience what is called "PTSS" or "Post Traumatic Stress Syndrome" - what I've gathered from reading the material is that it's basically like PTSD. However, it affects mothers in different ways, and some mothers don't experience it at all.

Bottom line: whatever you are feeling is probably extremely common, and nothing to be ashamed of. You're entitled to your feelings! :)

I'm just a student, so I don't know as much as a doctor might be able to tell you... but I just thought I'd throw in my 2 cents!

And Madeleine looks SO CUTE in her halloween costume!!

jocelyn said...

Hey A,

(thanks for the gifts, btw, got them tonight)

I'm so sorry you feel like these feelings are invalid somehow. I can't pretend to know what it is you and Ryan have felt over the past couple of years in dealing with this, but I do know how intensely I love my kids.

I CAN relate to your feelings regarding the 4 month mark, and I think it's completely normal.

You have no frame of reference beyond that point except previous experience. When you do have another baby and as you struggle to get past that significant marker, I bet you will find the entire process healing even as it is difficult.

Love.

Adelaide Morris said...

Amber, I dont know if this will help, or not, but I think that what you're feeling is the sign of being a good person and a wonderful mother. You experienced something unfathomably awful at Mad's 4 months: you don't want ANYONE to go through what you've been through. I, personally, think that is very noble. I think that it does GOOD for people to know Mad's story. Then they know to be on their toes, know to pay ATTENTION to things that don't seem right. And they know there is HOPE. That even if it is the worst of fears, it can be OK, or at least on the way to ok. I know that I held my breath at Adelaide's 4 month mark, and I have been more vigilant than I would have because I know Mad's story, but I am very THANKFUL for that caution ( not thankful for the Mad's circumstances that created it, however), and thankful that you and Ryan shared your, and Mad's, story with me. I think that anxiety you feel does good for other parents, although it is probably unhealthy for you. I imagine that you will always have a version of it for those you know at the 4 mo mark, but telling Mad's story might help alleviate the effects on you over time. At least I hope the HOPE from her life will provide some relief to you. Another thing I was thinking is that, as Mad and the other children you have met get older, they can help raise awareness, maybe you can help her do volunteer work as a teenager and later in college to get more companies involved in Childhood Cancer Awareness. Its the hope stories that help draw the public into Breast Cancr Awareness, and Mad can do that for Childhood cancer if she wants to. The more foundations, catchy ads, and companies that are made aware pf Childhood Cancer and the advancements they've made, the better. Maybe Mad and her friends, and you, can make the future brighter for awareness by telling their stories loud and clear. Either way, I think what you, Ryan, and she have accomplished is incredible, and you shouldn't ever feel you are, or have been, selfish or wrong for what you feel!