Fries are done

Monday, December 13, 2010

End of the Road

The protocol for Germ Cell Tumor calls for a certain schedule of post-treatment follow-up tests for 48 months. At our visit in November, we found out that December is 48 months! Dante's bloodwork came back within normal limits. So, we have one more chest x-ray to take this month and then essentially, we are done!

Well, not totally done, but we are now in the group called "long-term survivors", and we will see a different specialist from now on and return once a year. The doctor apparently specializes in long-term effects of the chemo treatments. We're excited about that because we've been asking those questions for years now. (So strange that I just said years...or even to think it has been 48 months.) We did ask the doctor about a couple of issues we have noticed with Dante (nothing major) and if they could be long-term effects, but she really had no idea. Hopefully some of those questions will get cleared up by the doctor next year.

At our appointment Dante did pretty good, thanks to the TV in the room and the ipod. He was getting himself really anxious about the blood draw, but then he was so distracted that he only screamed for a couple of minutes this time. The nurses were very excited to see him. As soon as I rounded the corner and saw them all, I remembered so many visits and all their names and how amazing they were for our family. We were very fortunate to have a clinic so close with such a great staff.

Before going, we tried to get his pulmonary function test. (That's the one to see how much his lungs were effected by the Bleomycin.) He started out doing OK with all the breathing contraptions, but in the end, he is still too young to test. He is too small for the equipment and not quite mature enough to be able to breathe in strange sequences for them to check. We will wait until next year and try again.

Our lives at this point have few daily reminders of all we went through. We get so caught up in the day-to-day and start stressing about all the things we have to do and lose sight of the reality of life. One positive of Dante's journey is the perspective gained in these times of stress.

Elizabeth Edwards said it with such grace, "...There are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful."

Dante is in first grade with another wonderful teacher at Perkins. He is writing better and still learning like crazy. He is taking strings this year, which I can't wait to hear. (I wonder if it will be payback for all the violin squeaks I made in our house growing up! Sorry mom!)

He is now in Gifted class too. He seems to really enjoy that class and had to do his first real research project over Thanksgiving break - about Orcas. Or should I say "I" had to do his first project? It felt like it, trying to keep him on task, but he did the whole thing himself and decided what to include and what was important to share. But man is he lazy...he will be a master at Twitter - trying to reduce all sentences to as few of words possible. I had visions of late nights in middle school already.

Dante is really lamenting the loss of playground time. He has Physical Education and about a million specials (art, dance, drama...and more!) but no unstructured play time. I think since his brain is going a mile a minute, he enjoys the freedom of just running around and having a physical outlet after working so hard to sit still in class. (OK, so he doesn't exactly sit still but he tries) I suppose that is one more thing taken away in education in favor of more teaching time. I still think 20 minutes of play would be better for all involved!

One of his favorite activities is making imaginary planets. He will take a sheet of paper and in each of the four corners he will draw a planet with a specialty. For example, there is a Planet Book - where all the aliens get books, a Planet Burger - where aliens get burgers, Planet Spongebob - where all the aliens get squarepants...His wall next to his bed is now covered in them. He is still into legos and playing spies and building stuff. And he still asks a bazillion questions.

Carina is growing up to be a very confident girl. She loves her class and classmates at Perkins pre-K. Today as we were walking to class, she is walking down the hall just belting out Santa Claus is Comin' to Town. She is also inquisitive like Dante, but her way is mostly in making connections between things she knows and clarifying. So fascinating to watch the differences between them as they grow up. She is very silly and loves making her brother laugh. As you can tell by the photo of them with grapes in their cheeks...

I know we stopped writing here very much, but we felt like the vision of this blog was about Dante's journey with cancer. Any time we have updates on the various tests, long-term effects, hearing loss and who knows what else the future holds, we will come back for a visit and report out. Perhaps just put us on your RSS feed or bookmark our site to check back. We are here and enjoying life and will keep everyone posted on the milestones on our continued journey.