Wednesday, September 14, 2011

Blog Your Heart (a challenge)

Stephanie Howell has a challenge on her blog today - a challenge to blog your heart. I don't always go into the deep end of things with my life... well... mostly because it can go pretty deep. But I have some deep stuff to share today.

Yesterday, my baby Collin turned 2. This picture was taken in the rooftop healing garden at Yale after his chemotherapy appointment. How many children need to get chemo on their birthday? I don't know... but I know if it wasn't for chemo, Collin wouldn't have made it to this birthday, and for that we are truly blessed.

He was diagnosed at 6 months with brain cancer - Pilomyxoid Astrocytoma (I dare you to google it, you won't find much). It's a rare brain cancer, and as such has not had much research - which means there is no definitive treatment plan which is known to work to "cure" this cancer. Collin will never be cured, he will always have this brain cancer in his head. The best we can hope for is shrinkage and stable. So far he seems to be doing well on his current treatment for the past year and a half, other kids with this diagnosis have had to go through several different regimens before finding one that works. His treatment plan currently is indefinitely - as long as it's still working and the cancer is still shrinking. I know one kid who's been in treatment for 5 years, and every time they stopped treatment it grew back quickly. This is the long hard road we are on.

We celebrated at home by having cupcakes. I had to hold Collin's hand while we sang happy birthday to make sure he didn't explore and touch the burning candles by mistake. Oh, I forgot to mention, he's blind from the surgery to try to remove the cancer.

We let him smash up the cupcake and play with the frosting. He even managed to get a couple little tastes of the frosting which made him gag... he developed a feeding aversion before he was diagnosed and he hasn't eaten anything by mouth since March 2010. But we feel grateful that he at least put his sticky frosting hand up to his mouth... that's a big thing for us.

Then his big brother Liam gave him a present (we'll be having two big parties this weekend so we're saving the other gifts for then). Collin had fun for a few minutes just playing with the bag before Chris helped him reach in to feel what was in the bag.

Meet Collin's newest favorite chewtoy... Captain Nummy Pants.

Happy Birthday Collin!!

Things I have learned about myself in these past 2 years:

1. I am so much stronger than I ever thought I could be. Other people tell me they would have become completely insane dealing with everything I have to do on a daily basis.When we found out he had cancer, I told myself that I would be strong in the moment because I needed to be. If I fell apart, Collin wouldn't get the good care he needed to get. I have to be strong for him. 

2. I decided scrapbooking would be my emotional outlet. When I'm ready to handle it, I'll print out all those pictures and scrap and cry. I've done a few layouts just touching on pieces of our journey, but I still fall apart when I try to look at the pictures from when he was in the hospital for 6 weeks for surgery.

3. I don't see a therapist, although I probably should. I keep tabs on how well I'm doing by how much I want to scrapbook and/or cook. I know I'm doing bad when I don't want to do either for more than a day or two and try to do something to get myself out of my funk. So far I haven't needed any meds to deal with life.

4. In situations like these, you really do find out who your true friends are. A lot of people have fallen off the map for me - including family. Sad, I know. But we've had several new friends pop up who've really become involved in our lives.

5. Because of his surgery, Collin is blind, and he had a stroke causing left-sided weakness. He's just learning to crawl and stand, but can't do either on his own yet. He has several therapy appointments a week and has come a long way since his surgery, but he still has a long way to go.

6. I have to keep myself from getting angry or thinking about what Collin would be doing if he didn't have cancer. It's a rare photo if I get one that looks like he's actually looking at the camera. He would be playing more with his brother. He would have a few words he could say, instead of just babbling. He'd be walking around and getting into trouble with his brother. He'd be eating solid food and hopefully enjoying it - he had quite an appetite before he started getting sick.

7. I have to remind myself to be blessed for what Collin is... a beautiful boy with a beautiful spirit. He loves music, he laughs at everything, he's always happy. Even after everything he has to go through, he's always happy. We could learn a lot from that boy... I already have.

Life is all about choices... even after everything you have to go through, you still have the choice to be happy. You may not be able to change anything, but you can accept it and choose to be okay with it, and be happy.


  1. i'm sitting here with tears streaming down my face. what a precious little boy. i wish i could just give you guys a hug. thank you so much for sharing.

  2. Tears here also. I don't have children because of health issues. It is easy to feel sorry for myself, but then someone, and there is always someone, reminds me how beautiful life is no matter how difficult. Thanks for sharing.

  3. What an amazing story, and strength you've shown through it. Thanks so much for sharing.

  4. Happy Birthday to your little guy.

  5. Bless your little guys heart. So sorry he and your family have to go through this, but you seem to have an amazing spirit and you are doing very well being strong. Enjoy every minute you can. I'm sure you do. Happened upon your blog due to Stephanie Howell's challenge. Glad I did. Happy birthday to the little guy. I pray there will be many more.



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