Survivor. I like the sound of that.

Today, we finally went to the long-term survivor clinic with Dante.  He is officially 8 years post-treatment and our protocol was completed a few years ago, so we are down to just annual check ups.  Hard to start writing about this again, as I know other children still dealing with cancer and treatments.  I melt a bit of ice cream for them often and am hopeful that their "new normal" will become an "old normal" soon.

All Children's has recently set up a separate clinic visit for long- term survivors.  They had been telling us about this plan for a while, but I believe it just started a couple of years ago.  This visit starts with a discussion with a social worker to be sure we are all doing well, help us with any resources we might need and a focus on making sure Dante is successful in school. I told her we would love to know a way to help fund new hearing aids for Dante - those things are crazy expensive and he's had the same pair since 2007!  As Dante moves into middle school next year, his hearing aids will play an important role in keeping him on track in school.

We then met with Claudia (who was at the clinic throughout our treatments) who provided us with documentation about cumulative doses of chemotherapy, surgeries and other information that might be useful for other doctors as Dante gets older.  She spent a long time reviewing all the possible late term side effects of his treatment.  This consisted of lots of maybes, some with high risk and some with a low risk. (Certainly brought back those old feelings of anxiety and anticipation.)  It was useful information to know what to look out for and what tests need to be done.  Dante does need a pulmonary function test, as one of the drugs, Bleomycin, can cause lung damage, so we want to keep an eye on that.  The only definite side effect he has so far is the hearing loss.   Probably the one we always worry about is the high risk of a secondary cancer, like Leukemia, due to his treatment.  He is at a medium risk for that, but the range is from 1 to 10 years post-chemo.  (2 years to go!) They also provided us with several packets detailing other side effects. 

We were discussing that the protocol was relatively new when Dante started it and the initial children to receive it were only about 5 years prior to Dante.  Claudia couldn't think of anyone in her 12 years with All Children's who had the same cancer. The small pool of comparison patients made for lots of maybes! But it was extremely helpful to get the information we did receive.

Dante had to have blood drawn and that was pretty traumatic for him.  He still gets himself worked up like crazy over needles.  Poor guy.  (I did the same thing as a kid, so I get it!) The nurse was really patient and awesome with him.  We are so thankful for all the nurses in the oncology clinic.  They've always been so supportive and helpful.  We will get those results in a couple of weeks, but all signs show they should be normal.

These visits will continue annually or bi-annually until he turns 21.  Since he has regular checkups with a doctor, they are not as concerned about him coming as frequent.  The main thing they want to know is that he is being monitored.  I'm pretty sure Dr. Patranella is always on the look-out for us!

One of the things the social worker asked us was about how this experience had changed us.  Chris said, "It makes it easier to tell people 'no'." I told her that I will never forget being completely stressed out over a messy house (with a 6 week old baby in my arms) when the phone rang telling us about the tumors.  Those petty things that we let get to us just don't matter in the grand scheme of life. And life is good. :)

Thank you everyone for so much support over the years!

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.

"What I tell you three times is true"

Three years have now passed since Dante was declared "all clear" and we could stop and get off the chemo roller coaster ride. I got a call today from the clinic - everything looked fine on the latest tests. (They actually even sounded surprised that I was calling for results. Strange. Do they think parents ever really take for granted that cancer is totally gone from their lives? I think not.) Regardless, YAY!!!!

At dinner, we toasted and told Dante we had some good news. When we told him his tests came back all good, he looked disappointed and said, "Oh. I thought it was going to be something else." He thought we were announcing a special dessert or something. He has no clue, really. He asks sometimes, but mostly, he has no memories of the experience. He has some snapshots, but most are fueled by photos he sees.

We had our appointment last week and everyone was so excited to see him in the clinic. They all commented on how tall he was. He was super happy...until blood had to be taken at which point he proceeded to shriek until it was over. Nurse Pam brought him a special gift after he'd calmed down, so I think it might be easier next time.

We discussed the fact that we could now just get him tested once a year. Both of us agreed. Nope. We'll stick with 6 months for now. His cancer was just so aggressive, we can't imagine if it came back somewhere where we couldn't see it like we could before.

We'll be scheduling a pulmonary function test soon. Since he was on Bleomycin, they typically test the lungs for impairment. Besides hearing loss and hair loss, that was one of the side effects I remember Dr. Grana telling us was a risk. When Lance Armstrong had cancer, they found another drug instead of Bleomycin so that his lung functioning wouldn't be affected. Dante isn't exactly the sporty type, but you never know. We certainly don't notice anything at this point and since he didn't have as much of the Bleo as the others, hopefully this is just crossing something off of the list.

At this point in our follow-up appointments, we hear often that no one really knows the long term side effects of chemotherapy protocols. They just find what kills the cancer and some immediate side effects, but they haven't been in use long enough to really know. We have heard he's more likely to develop a blood cancer - but it's extremely low. Other than that, nothing specific...I'm going with nothing! How about you?

As for Dante, he is an amazing boy. He is such the querist and school has just fueled his questions more. "How do you make movies?", "How do bees make honeycombs in that shape?", "What is Black History?" Today, we got the next Magic Tree House book (Buffalo before Breakfast) and he read 5 chapters in the car in about 25 minutes of errand running. He then proceeded to tell me about clothes he wanted to make out of animals like the boy in the story.

Perkins is a really great fit for Dante. He loves the variety of classes, especially drama and dance. He has a fantastic teacher and has started making good friends as well. Speech is going well, slowly but surely improving those "s" sounds. He's on his second FM system (and hopefully the last) and seems to be adjusting just fine. And while he sounds like the total geek, he is a boy after all. He does not like to write one bit. As soon as writing is involved, suddenly his answers and stories become short and one liners. Hoping to get him past this so he can keep on moving where his brain wants to go.

Also being a boy, Dante is now obsessed with the Wii. We got it for Christmas and thought it would be good for his coordination and balance. He'd play it day and night if we let him. All of his writing stories in class are about the Wii. When he plays for 20 minutes, he tells people "We played Wii all afternoon!" At least he's interacting and up and moving with it. It is pretty cool to watch him doing rhythm kung fu.

Carina, Carina, Carina. She is a princess through and through. Working everyone with her charms and wit. She has Dante totally wrapped around her fingers. The two of them love each other so much, I sometimes have to stop them from hugging and kissing too much. (Of course, then they start hitting and kicking a few minutes later like typical siblings.)

Carina is always pretending and playing with her dolls and figurines, making up songs and stories. So fascinating to watch the different minds at work. I see much of myself in her. She sees Dante's buttons and proceeds to push them just like I did my sister, Melissa's. (Again, Sorry Melis! :))

Carina's now obsessed with girls and every book or picture we see, she says, "I like the girl." And of course, princesses. Not really sure where all of that is from. I guess school, because I was never a princess girl myself. Would like to break her of that habit, but for now, I'll just go with it. Some days she says, "I'm not a princess today. I'm not wearing a dress."

We will be trying to get Carina in the pre-K program at Perkins to save some time and money next year. It will be nice to only have one drop off in the mornings!

We will keep you posted on any health updates. Dante is getting tested for gifted soon, so that should prove interesting...

Milestones

Three years ago today, around right 9 pm, we received "the call"...telling us about Dante's tumors. At the time we had a 6 week old baby, a 2 year old and life was already strained. We had NO idea. I always think about Chris hanging up the phone and saying, "I can't believe what I was worried about before that call." What a life changing thing to happen to any family. What an unfortunate way to remind you of life's priorities.

But, what an amazing three years it has been. We have been blessed with a now healthy 5 year old and 3 year old. Thank you for all of your support over the years.

Dante started school today - first day of Kindergarten. He had a great time. Over the course of the evening more stories started spilling out about his day. At bedtime, he suddenly named all the teachers he met, things they talked about, what he saw and about going tomorrow.

He told Chris, "Hey - Did you know you can BUY your lunch?! Some people had lunch they bought! Can I do that sometime? Maybe I can do it in a pattern...bring my lunch, then buy my lunch, then bring my lunch, then buy my lunch?" (I think we have a math geek on our hands!) Then he told me,"Some kids had corn dogs, with no sauce. Some had corn dogs with sauce. They had cookies...oh and green beans.. and cookies. Oh and they had milk, like strawberry milk and chocolate milk? Maybe I do that someday. I would get cookies and a corn dog, but with no sauce...." whew. I was worried about him, but I think he will do just fine.



This summer, I heard from one of our hospital buddies from 3 years ago. Sara's tumors have returned. We're thinking of them all the time and hoping for the best. She had been "cleared" right around the same time as Dante two years ago, and we all hoped that would be the last for both kids. Please keep Sara and her family in your thoughts.

Let's get caught up, shall we?

First off - best news - Dante's latest test results were all normal! Woo Hoo! We are now to just blood work and no CT scans, although in December they would like a chest xray. Germ Cell tumor typically recurs and shows up in the lungs, so they want to make sure once a year with an xray. They still want us to swicth to once a year testing, but I don't think we are ready for that long of a break yet.

Dante starts Kindergarten tomorrow! WOW! I started crying today when I told the staff at school. Guess I'm a little more stressed about it than I realized. We met his teacher today and she seems friendly and on the ball - knew who he was and had already read his IEP. He also has a speech teacher who is super cool and will be looking out for him as well. Glad I know a few people on staff, it makes it easier to navigate who to talk to for things.

Dante picked out his outfit for the first day - a silly halloween shirt that says, "Chocolate, good!" and smells like chocolate. He's all set up with the Star Wars lunch box and a new backpack.

He'll be using an FM system in the classroom. This allows the teacher to talk normally and it is amplified directly into his hearing aids. We tested one out this week - and wow. We were whispering things 2 rooms away and he could hear it all clearly. I think that will all work out well. He'll have speech therapy twice a week for his lisp. I'm sure it will be corrected soon, as he can correct it when coached.

Carina had her first day of class today. She did great, although I guess she got a little bit upset at naptime. She has Ms. Johnson this year, who was Dante's 3 year old teacher. We are a little worried about the potty training thing, but she is coming along well. She just doesn't want to grow up around me. She even says that she wants to be a baby.

The other day she was reminding us that she is still a daredevil...this the girl who is 3 and has already had stitches, broken bones and multiple xrays...

I'm always calling her a silly girl and she has started telling me that I am a silly mommy too. I would have to agree.

We had our typical summer of playing, although I'm not sure where all the time went. Between swim lessons and a couple of summer camps, the days flew by. We had our annual escape to Alligator Point, which was rejuvenating as always.

Stay tuned for more filling in the blanks and photos of the first day!

Growing Up

After a stressful month of waiting for results of school "choice", Dante got into Perkins! (magnet school for arts) We are all so excited. Dante said to me, "Can I go to the music school now?" He is so into music, singing, and dancing. He also will literally spend hours (if we let him) just watching the bonus material on DVDs, especially when they provide artwork of the characters and scenes. I think it will be a perfect fit for him - and us!

Hard to believe that he will be in Kindergarten next year! I am getting sad about him leaving all his buddies from preschool. We have had such a great experience there where he feels safe and loved and comfortable. None of his close friends are going to Perkins but I'm sure he will make more next year.

The other thing that makes me realize Dante is growing up is summer camps! Wow. I had no idea. It is April. I already missed a bunch of them that don't happen until July! Trying to coordinate calendars with a variety of playmates, family, Carina, what is available, how much it costs....I am exhausted. But, I did finally figure some out. Dante will go to the Arts Center for one week in July with his friend Mya. Carina will go to Boyd Hill that week for Jungle Boogie camp. Then in August, Dante goes to Boyd Hill for the Young Naturalists camp and Carina gets to go to gymnastics camp for a couple of mornings. Other than that, we will be frequenting the local pools, hanging at the library and trying to meet up with friends in places that aren't too hot!

Easter was fun this year. We had been stalling all day on the actual egg hunt and Dante wasn't really interested in anything except - more presents for him! When it actually came to the hunt they were so cute. Carina immediately saw a green egg and said "Dante, here's one of yours!" After that, Dante wouldn't touch the purple eggs or he would bring them to her.

All Dante wanted was the candy and all Carina wanted to do was to constantly reopen all the eggs to see what was in them.

Carina proved to us, once again, what a girl she is...when she first saw her Easter dress, her face lit up, she smiled and said, "It matches my new shoes!"

Funny things kids say

Dante to Carina, very serious - "No Carina, You're lying."

Carina - also very serious - "I am not a lion!"

Dante to Nonni - "I want a Happy Meal for dinner."

Dante to Carina - "There's Burger King. Burger King is similar to McDonald's. Carina, Burger King is SIMILAR to McDonald's." (repeat several times)

Dante to Mommy, "Carina and I are going to wait up front and read What Color is Your Parachute?"

Dante to Carina, "OK, Let's see. You get the chapter "What if that doesn't work?" Carina? What if that doesn't work. OK?"