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?"

Done with January.

Wow. What a month for us. Pneumonia times 2, high fevers times 2, coughing, ear infection, missing days of work, exhaustion and then bronchitis for me. I think Dante, Carina and I kept the antibiotic manufacturers in business. But that's all in the past now and we've been feeling great.

Except that the oak pollen has begun that lovely fuzzy layer in our yard, which means it's Chris's turn...

We also spent that month of illness stressing out about picking an elementary program for Dante. We'd love for him to get into the arts magnet, but I think we have a better chance of winning lotto. There are some other good programs, so it's very tough to decide. We have to sit around and wait now until March to hear.

We've all become addicted to the Snack Time album by the Barenaked Ladies. Dante wants to read the lyrics the whole time as he rocks out, Carina bops her head along and sings, and even Chris joins in...I highly recommend it - even for non-parents. Very contagious.

Valentine's Day was fun for the kids. They made their own valentines cards. I basically laid out paper, drew a grid, gave them some markers and stickers and said "Go for it!" Dante wanted his cards to have Buzz Lightyear on them, of course, so Chris drew an outline on everyone's cards and Dante colored them. Carina put a special set of googly eyes on Ms. Dorota's card. When they had their parties at school, both kids were very excited. Still not quite sure why people give toddlers loads of candy...my teeth hurt just looking into the bag they brought home.

Valentine's week brought us a surprise - Grandpa came to visit! The kids were super excited to play with Grandpa and show them all their stuff. They really enjoyed having him here to read and hang out with. Hope we get to see him again soon!

Everybody Say - "Pneumonia!"

I was planning on writing a lovely update about our December and all the good news we had...

No more CT scans!
Blood work results were excellent!
No tumor markers in blood!
Only blood work from now on!

Then Dante comes home Friday with a low fever and a cough...that escalates to a 105.5 fever on Sunday night (and it would not break for about 5 hours)! We didn't go to the ER (as everyone has asked) because his behavior didn't seem to warrant it. Instead, we took him to Dr. P first thing Monday morning to find out - Pneumonia. We took him for chest x-rays and blood work. Man - does he freak out now when he has to get blood taken! He yelled for easily 4-5 minutes - after the needle was taken out. I'm sure it made all the people in the waiting room nice and relaxed for their turn.

Anyway, results show so far that he has viral pneumonia and that we just have to take it easy, give him a nebulizer treatment every 4 hours and keep an eye out for no fever. He's been fever-free for about 40 hours so far, so I think the worst is past. He's been in a super good mood despite all of this, so that's encouraging.

Carina has been fine but is now sleeping and starting to cough...looks like it might be another long weekend...I sure hope not!

We had our 3rd annual Celebration of Life party for Dante in December. We had tons of kids and lots of playing. They all found the sidewalk chalk and decorated the whole playset. They had a blast. Apparently Dante's best friend even asked if he could have his birthday party at "Dante's house." As a bonus we found that it's much more fun to have a playdate now that the kids are older - you can actually hold an (almost) complete conversation.

I met a volunteer parent at work recently and knew she looked familiar and friendly...turns out that she is an overnight nurse at All Children's Hospital. She was our nurse a couple of times and Chris recognized her name and description right away (since he stayed most nights.) It was really cool to talk to her, and hear about all the nurses that we miss at the hospital. It was also nice to let one of them know what a huge thank you we owe them for taking care of Dante - and us! She did say that Dante was one of the patients the nurses would "steal" or "try to get" because he was such a good patient; which isn't something you really think about when you're there, but it's nice to know we weren't on the opposite end of the spectrum...... except down in Radiology (who loves ya Amy?!) Anyway, she's an amazing parent and inspiration that I wish more parents would follow with middle school students - volunteer - get involved! (OK - off the soapbox)

On a bright note, Dr P said that Dante's ears looked clearer than ever!

Levitating off the floor

This was Dante's Christmas message to our garbageman. We drew it and then sat in the driveway and waited for him to come by.

Carina walks out and says, "it says 'Carina is going to Kim's house." She now thinks that every word that begins with C is "Carina". Of course it is.

The kids were SOOOOO excited about Christmas this year. We couldn't even get a decent picture they were vibrating with so much excitement the whole time.

It started off with the Children's Cancer Center Holiday party. This year, we arrived late - and WOW - was it crowded. Most of the tables were packed and almost all the food was gone. Someone said there were about twice as many kids as last year. I ran into a former Bay Point student and he even played with the Dante and Carina while updating me on his health and school life.

Dante kept saying that he hoped Santa was going to bring him a "big Buzz Lightyear". Chris and I were worried...on the form that you fill out with ideas for gifts, I listed robots and such, and then as a fallback I wrote - "or anything Buzz Lightyear". We ended up being one the last people to come up and meet Santa, and as we walked back to the table with the presents, we didn't know what to expect....Dante opens it and finds a big Buzz Lightyear! I swear the kid was levitating he was so excited. Carina got a wooden bed and knitted blanket for her dolls, that she promptly found a home for and started putting everyone of her dolls to sleep in.

It's such a great party. We always get to see some nurses from the clinic and occasionally run into people we met at the hospital. The thing we like best is seeing so many healthy kids running around with big smiles on their faces.

The kids helped decorate the tree this year. Carina especially took pride in showing us daily which ones she hung on the tree, "Here's Dora, and the camel, and Tuga the sea turtle..." It was fun seeing them lay on the floor looking into the houses underneath the tree. (of course, said tree still needs to be taken down...we extend the holidays as long as possible in our house.)

By 8:30 the kids were off to let visions of sugarplums dance in their heads...

In the morning, Dante came into our bed and just hung out for awhile, then he calmly said, "Was Santa here? Did he bring presents?" I think this might be the last year for such a mellow start.

Not much could match Buzz, but a new bike helped. He was so excited he didn't even take off his PJ shirt! Carina got a new souped up version of Dante's old tricycle - Chris painted it pink and purple, and put her name on it - it looks super cool.

Carina was determined to be stylish - regardless of how hot it was that day; wearing her new hat almost all day.

We had a relaxing dinner at mom's with Granny Mil and the rest of our gang. The kids were great and especially excited when Daddy's pumpkin pie came out after dinner! Even through exhaustion, they didn't go to sleep that night until almost 11!

The next day, Aunt Melissa and the cousins arrived. Lots of new playmates and fun to be had. The kids were super excited to have a chance to play with everyone and didn't want them to go.

We wrapped up our break with a couple of trips out to the beach to enjoy the weather and the sunsets.

Happy New Year!