Fries are done

"What I tell you three times is true"

2010-02-08T21:54:00.017-05:00

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

2009-08-25T21:03:00.005-04:00

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?

2009-08-24T18:22:00.013-04:00

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

2009-04-22T09:46:00.009-04:00

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

2009-03-25T22:21:00.008-04:00

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.

2009-02-19T22:23:00.010-05:00

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!"

2009-01-13T22:41:00.023-05:00

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

2009-01-12T23:16:00.013-05:00

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!

Two Years!

2008-12-01T22:45:00.007-05:00

Dante had a CT scan last week - all clear! That puts us at 2 years with no sign of cancer on a scan...(we have the blood work appointment in 2 weeks to make it official.)

And even better - this was Dante's first scan with no mediport - which meant an IV...he did great! And NO sedation! Amazing what a quick trip it was to the hospital with no sedation needed. Plus, we didn't have to deal with the lousy drunk afterwards.

The scan results said that his L2 vertebrae compression is unchanged. Dr. Patranella said she thinks it has probably fused that way at this point and not to worry. We were worried that he would have back issues, but she said as long as there is no change in it - it's good!

I am so thankful that we have medical insurance...Carina was suddenly in pain last week, wouldn't bear weight on her leg without crying. Doctor advised getting an x-ray because it could be many things and nothing was obvious on physical exam. She had x-rays taken of her whole leg and foot- nothing found. Probably just strained it a little...anyways - got the actual bill this week. Those xrays cost $1500! I can't even imagine. I mean - I know how expensive chemo was for Dante, but I was floored when I read that one. Luckily, she's just fine and was jumping around a couple of days later.

Other than that - life is good. The kids are fun and just having a blast together pretending and it's very cool to watch.

Creativity is flowing this fall

2008-10-27T22:24:00.013-04:00

Even though Dante is typically the singer of the family, Carina picked up the guitar on her own the other day and started singing away about her new boyfriend...

So, not to be outdone, Dante had to sing an original tune: "To Infinity and Beyond - the Buzz Lightyear Song".... listen and watch for me trying not to giggle...

I wish I could freeze them both at this age; maybe without the diapers...

They are so much fun right now! They are playing and pretending and drawing and singing and just really happy kids.

Here is a family drawing Dante made this weekend:

School Days

2008-09-23T22:30:00.011-04:00

The school year is already zipping right by us. Life is busy around our household these days. Everyone is rushed off to work or school and at night it's a quick wind down to dinner. Chris has been working most weekends, so not much spare time for updating!

Dante is doing great in pre-K. Every day he comes home and tells us who he was friends with that day. He has a couple of regular pals that he's always excited to see. He comes home with really neat art projects daily and is really trying to master writing his letters. He's branched out from just smiley faces and has started drawing specific people. (The photo on the left is Buzz Lightyear for those of you who couldn't tell.)

Carina started pre-school as well this year. She is still clingy at drop off, but has a great time with Ms. Dorota and friends. She is charming everyone she meets as usual, but being very 2 lately. She loves to put on her Dora and Diego Backpack when it is time to go to school. Then of course there is the discussion of which shoes to wear...

Life seems to run a lot smoother these days since we don't have to rush both kids off in opposite directions and make it to work on time. The only down side is that Carina is pretty much a terror in the evenings after being so stimulated at school. Most days, she asks me to put her in her crib when we come home, just so she can lay down and be by herself for a while. Which actually works out for us all to get dinner on the table!

Dante made it through the post-surgery time without a problem. As a matter of fact, they gave him a prescription for pain meds, saying "he will probably need this by the time you get home." He never even mentioned a thing about it! No pain, no itching - nothing. He sometimes still talks about it being his port or where his port was. Unfortunately, the new scar is starting to be hypertrophic like the last. It's not too bad yet, so maybe it will not bother him. No new tests needed for him until December!

I had the privilege of getting to visit my sister and nieces and nephew for a weekend with everyone in Louisville- as Hunter became an Eagle Scout! We are all very proud of him. It was great to see them all, and our friend Todd, and was reminded of how much we miss them! Sure wish plane tickets and gas weren't so expensive these days!

No other big news to report around here. We finished off our summer with trying our best to go swimming a few times a week and play with all of our friends. We really had a nice summer and sure are glad I have that time off of work!

Smooth Sailing

2008-07-29T22:15:00.004-04:00

The surgical staff was correct - everything went very smoothly today. Sara even stopped by for a visit as we were going through the pre-op process. Dante was his typical stubborn self, but who wouldn't be on no food or drink and woken up early! He doesn't come down off of anesthesia very well, but made the nurses giggle when they said his name and he replied, very sternly, "I'm not Dante. I'm Buzz Lightyear."

We were home by 1 and Dante has had no pain medications since leaving. (They told us he would probably need some as soon as we got home.) Tomorrow might be a different story, but we're much relieved that the surgery is over. He has 5 days of no bath, which he's pleased about, and 10 days of light activity.

As long as Carina is careful, we shouldn't need to return to the hospital until December. Woo Hoo!

Summertime

2008-07-27T21:46:00.019-04:00

First order of business with this post: Dante is scheduled to have his medi-port removed on Tuesday, July 29th. Please send all your positive vibes for an event-free surgery. The surgical staff told me it should be pretty straightforward, as soon as he wakes up from the anesthesia, we can take him home. He'll have steri- strips across the scar and he'll have to take it easy, but nothing major.

I've been talking to him about it and I think he's a little freaked out. (As am I.) The port is something that's part of him. (He has had it two years next month.) Tonight he said, "OK, but not yet."

As for his scar, the surgeon plans to remove the scar while removing the port. Since he has a hypertrophic scar, he might have another one from this surgery as well. We'll have to address that as it happens.

Now, on to the fun stuff...Did we have any more mishaps on our summer road trip? NO! Whew. We were gone about 3 weeks and packed it in! (Beware of lots of photos - I just couldn't decide!) We went to the lake and the splashground just about daily. But we also fit in visits with friends and family.

We went to Misquamicut, Rhode Island. I now understand why so many people like beaches like Clearwater Beach and St. Pete Beach instead of Ft. De Soto. (If they are from New England that is.) We walk over the dunes and it's a sea... of people and umbrellas everywhere! And the parking lots were half empty! We spent a week at Alligator Point and the kids hardly played in the sand. We couldn't get them to stop playing in it up there! Weird. There were lots of cool rocks and the water was super cold. We all had a blast. It was surprisingly mellow and relaxing, even with all those people around.

We spent July 4th with some school friends of Chris's in East Hampton. Dante was showing off his mad diving board skills to Jim, Cindy, Zack and Riley. Then, Carina had to join in of course...

We all had a really relaxing and fun day. The kids were passed out before we made it home.

We visited with Grandpa, Lynda and Uncle John. Dante was enamored of all John's electronic games and especially liked to rock out to guitar hero. (Or was that Chris?) For about 10 minutes after we left that night, Dante kept repeating, "I don't want to go!" Then he promptly passed out.We lucked out and got to play with Grandpa at the lake another day while we were there.

Next, we were on to visit with another school friend of Chris's, Katie, and her family. This was an especially cool visit for our family, as Rob went through the same experience as Dante, with testicular cancer. He had all the same chemo drugs and everything. We were able to talk to him about the experience and have an adult's perspective on it, plus someone who could communicate about it! (At 2, Dante couldn't tell us a whole lot of emotions or physical symptoms.) Rob even has port scars that look like Dante's. He is thankfully cancer-free and has had his port removed. He was telling us that the traditional "remedies" for the keloid or hypertrophic scars are pretty painful. (That was very helpful for us, I think we'll avoid those with Dante.) Today, when I was discussing his port surgery he told me he wanted to have his port "be like 'the boys' dad, Rob". (Katie and Rob have 3 super cool boys and Dante was having trouble remembering all their names!)

We had yet one more high school friend of Chris's to visit in New York City. We knew we'd have a good time and the kids would enjoy it, but we had no idea just how much! They are still chanting the mantra of wanting to see Chaz and Lucy. We (crazily, in hindsight) took the subway from Queens to Coney Island, with 4 toddlers, whose ages are 2 (Carina), 3 (Chaz), 4 (Dante) and almost 5 (Lucy). We did survive the hour and a half ride however and were able to get the kids on some carnival rides and even fish for a whale for each one.

After the rides, we went for pizza and then got ice cream from an ice cream truck. It was a super hot day and we were all good and sticky by now. So, by the time we got home, it was time for a bath! I think that was the first time Dante didn't fight about taking a bath the whole trip! Jen read books and the kids were off to bed. Jen and Mark fixed us an awesome meal and we were able to hang out and chat.

The next day, we were off to the Museum of Natural History. We figured they would all be into the dinosaurs, but as it turns out, we did a lot of this...

Not really, I just think this photo of Carina and Chris is adorable. She did that all by herself, just went over in the corner and pouted. That's her new 2 year old thing, because this was her birthday!

We had a good time and got back in time to play with the other kids in the children's garden outside.

We even celebrated Carina's birthday before bed. Check out the almost 3rd visit in a month to the ER at the end of this video...

We were all sad to head home after such a great visit, but all good things must come to an end. We had one more adventure up our sleeves in CT and then we had to head back to Florida.

We went on an excursion with the kids on our last afternoon to find a river they could wade around in. We stopped a few places and Dante and Carina just loved it. It was a perfect afternoon to say goodbye to our trip. Dante was very sad to be leaving Connecticut and kept saying we had to stay "4 more times".

We have kept really busy since we returned with as many play dates as possible. None of us is looking forward to going back to school/work, but we have certainly made some good memories to think of when we do.

"You are in so much trouble with her..."

2008-06-30T21:07:00.017-04:00

You know, people look at Carina's adorable little face and say, "You are in so much trouble..." Implying of course, that we'll be fighting off the boys as she gets older, or that she is going to manipulating everyone with her charms. Well, they have no idea.

This girl is all about pushing her limits and seeing what her body can take. Or maybe she's just trying to keep up with Dante. I think she has a permanent bruise on her forehead from tripping and smacking her head so many times. She had the collarbone incident, of course. (Which has healed well, luckily.) The following week, while trying to climb up unassisted like her big brother, she took a header off of a hammock. The next week she tripped at the pool and had a big bump on her forehead. Now, we're visiting Gomma's house in CT, I turn around to open the blinds in the kitchen and I hear her slip...

Carina was trying to climb up into the kitchen chair, slipped halfway and smacked her face on the arm of the chair so hard that she split a hole in her lip. I yelled for Chris to get out of bed (I'm still not sure what the crash was that I heard when I scared him awake) as I tried to calm her and Dante down. We had a lovely trip to the local emergency center and Carina now has 2 stitches in her lip. The cut was pretty wide and wouldn't heal nicely without. She screamed the whole time but as soon as we let her go, she calmed down. I would've screamed too seeing that big ol' needle coming at my face. The doctor was very nice and caring and was particularly concerned about how the line of her lips would heal.

Now, what do you think she did when she got up from her nap today?... Tried climbing the same chair! AARRRGGHHH! She was definitely more mellow, and not feeling her best, but she will be fine, I'm sure. Not so sure about us though. After all that I then proceeded to smack my chin so hard on a cabinet, I almost split it, and then went to kill a bug in the car and smacked the metal LATCH hook instead, with the heel of my hand. I can still feel the pain up my arm hours later. Maybe I should be in bed now...

Let's catch up, shall we?

We spent a wonderfully, relaxing week at Alligator Point beach, thanks to Lyndall and Bolling, again. This year was not quite as relaxing as years past- chasing two toddlers around doesn't stop in a different location. But, just being somewhere where you didn't have all the things "you should be doing" staring you in the face is amazing. The kids had a great time and keep asking to go back.

We came home and spent the next week and a half taking care of doctor visits for everyone. Dante had an audiology appointment, where he tested out his acting skills faking it in the sound booth. Chris had his own audiology appointment, trying to determine some ear pain from all those years rocking out, but now he has no excuse for saying he can't hear me; his hearing was just about perfect. We did Carina's follow-up x-ray. We met the surgeon to have Dante's port removed. (We have scheduled that for the end of July. )

We spent a day at All Children's Hospital, getting a GFR study done to check Dante's kidneys and a speech evaluation. We start the morning with a port access and an IV (which after it is used, he doesn't want out. Go figure.) They inject him with something radioactive and send us on our way. We spend about 2 hours with Heather, testing Dante's speech and language skills, due to his hearing loss. He needs some help with "s" and "sh". She suggested therapy to get him on track. (Ready for this cost? They suggest twice a week. Insurance says, OK at $25 a session for 60 days. If he still needs more, the doctor has to appeal. Yikes.)

From that appointment, we return to Nuclear Medicine for our first of 3 blood draws. It actually ended up being an all-right day. I had packed a ton of activities and we didn't do any of them! We visited Sara, from Child Life. Dante ran up and gave her a hug. We had a great time catching up and Dante was belly laughing and being super silly. He obviously remembered being comfortable and happy with her. It was great to see her and still don't know how we would have been where we are today without her support!

Every hour for 3 hours, we return for blood draws, in between playing in the play room.

When it's time to remove his port, I realize that this might be the last time his port is used...and strangely enough, I feel sad about it. How weird. I think the sadness had more to do with emotion of all we've seen with it, the nervousness of having it removed and something else happening, but really, no longer having the super easy way to get his labs done!

We're looking forward to some other fun activities this summer, minus hospital visits, of course. Lots of swimming, playing and hanging out with friends. Along with potty training and pacifier weaning for Carina... Hopefully lots of yoga for mommy too!

Oh, and by the way, the GFR test came back normal. Woo Hoo!

Words We Like to Hear

2008-06-06T21:52:00.002-04:00

"Normal CT with no tumor recurrence." "...Axillary lymph nodes seen...are subcentimeter and symmetric in appearance." (in the past couple of CTs, his axillary lymph nodes on one side had been enlarged, so this is good!)

And now we take a huge sigh of relief and thanks. What a great way to start our summer vacation!

Apparently, they don't bounce until 7

2008-06-01T08:36:00.015-04:00

Carina had her first trip to the ER this week. Carina had been playing with Karlie and Kristine, just sitting eating some snack in a little toddler-size chair. She turned to watch Karlie walk by and tipped over. She seemed generally OK, but more weepy than she usually gets after falling. Then she starts favoring her one arm and saying, "Neck. Hurt." The doctor's office says, "Yep, she needs an X-ray..."

Most parents probably worry about kids falling off the monkey bars and breaking something, not a chair 9 inches from the floor. Carina has a broken collarbone! And as Chris said, "Apparently, they don't bounce until 7!" She did really well in the ER, throwing the biggest fit for the bracelet. They tell us, "She'll have to have her arm strapped to her body for 3-4 weeks...Oh, and be careful, she might be off balance and tip off and re-injure her collarbone." Great. I could already see Dante tormenting her. She did fine that night with one arm in use. Thanks to Dr. P the next morning, she fashioned a bandage around her shoulders so that she has full use of both arms. (Whew.) There are 2 problems with this. One - Since she can use her arm, she is using her arm. She is quickly realizing how much it hurts to do the stuff she is used to. And when she trips, as 2 year-olds are apt to do, she braces her fall with her bad arm/shoulder. OUCH! Two - we can't wash the bandage for 3-4 weeks. EWWWW... At least we can bathe her.

It was a great lesson to tell my middle school students why they shouldn't lean back in their chairs!

The next day was Dante's CT scan appointment. While he looks like an old pro in these photos, the port access was MUCH tougher than usual. He hasn't had his port accessed since January and having been away from it all for so long, he was very anxious. It took both of us holding him down to get it done. Luckily, if he is still, it takes all of about 20 seconds. Of course, later, he told us that he didn't want his "port out."

Radiology was the usual chaos, but Amy took good care of us and.....big news...Dante did his CT scan with NO meds! Perhaps it was the game of hide-and-seek we played in the room and hallway or the light-up maracas and dancing around, but we just tried it and he did it! Wow - so much quicker and easier. We didn't hear results, so I am taking that as good news. I will post as soon as we hear something.

Over at the clinic, Dante and Daddy played a rousing game of Disney Princess Memory game. (It's pretty tough when all the cards look alike!) They took some more blood work, removed his port and we were on our way.

I just had to post this photo. This was something the two of them completely did on their own. They went and sat down right in the middle of Uncle Mike's flower bed and starting reading a book together and sharing snack, ignoring everyone around them. The majority of time, they are always playing together, laughing together, and wondering what the other one is doing. It is pretty cool to see. Now, if I could just convince Dante that Carina did in fact hurt her shoulder and shouldn't wrestle like she usually does we'll do O.K.

I'm Dante and I'm 4.

2008-05-24T23:38:00.011-04:00

I have been trying all weekend to get in here and write something up, but here is what has been in the way:

Whew. What a weekend. We just picked up daddy at the airport after a week to ourselves. I was running out of things to do and not get too overheated - so we ended up doing a lot of painting in the kitchen.

I know, I know. We are total slackers, not keeping everyone up to date. I feel guilty all the time, but have to set some priorities. Like sleep, baths, or bills. :) Well, at least the last one, right?

Here's the lowdown on our past two months:
Soon after our last post, both kids spent 3 weeks on antibiotics from horrible ear/sinus/ respiratory infections. Carina's started off as almost nothing, and ended up with a late night call to the doctor with a fever of 104.9. Dante was just not hearing anything and not too pleasant to be around, more often than not. I was starting to think it was impossible that these were just ear infections. It seemed Dr. Patranella's office had a standing appointment for us weekly. At one point, we had to give both kids antibiotics, inhalers, drops, and nose sprays! It was crazy trying to leave the house in the morning. You can imagine the negotiations that took place! As Chris would say, "We are now pretty much qualified to a broker peace between Israel and Palestine..." It took a few days after the last dose of meds, but they both seem to be relatively clear now.... (Shhhh.... I don't want to jinx it.)

Soon after they improved, we had a Spring concert at Dante's school. I think they were testing the kids in Dante's class to see if they can make it in Pre-K - All in one day they had a Mother's Day breakfast snack (many moms eating in the lunchroom and many overexcited kids), an extended birthday celebration for classmate Alex (complete with happy meals for all, Alex's mom playing all day and a cupcake cake), and then they returned to school to sing 5 songs in front of a crowd. They were all so cute and silly, but by the time they got on stage, many of them were just looking around and smiling. Dante had to have Ms. Debbie sit with him at one point to keep him still, but he was singing most of the songs.

The following week was Dante's birthday and he was very excited about turning four. We went to his four year old check up and he was telling everyone, "I'm Dante and I'm 4!" He had on his Cookie Monster socks, Diego underwear and was reading a Dora book - I never thought about it until I saw it all together, how American is he? He was very happy. Until the shots that is. Sorry D! He told me later, "Now I'm going to be 5!"

We had a mini-celebration at home that night.

It's interesting to think about what kids can remember; I think it was maybe Christmas or Nonni's birthday and Dante and I had a late night, going-to-bed conversation about what to give Nonni as a present. He says, "Cookie Monster Balls!" I started giggling so hard that he kept going..."Big Bird Balls! Elmo Balls! Jen Palmer Balls!..." and everyone he could think of with "balls" after it. No mention was ever made of this again. In fact, he hasn't hardly seen Sesame Street since. Then, when I asked him what he would like for his birthday, he got real quiet and said "Big Bird Balls!" As soon as he said it he got this look in his eye and started smiling. Then he is on a kick. "Dante, what would you like on your cake this year?" "Big Bird!" (Carina - "Elmo! Cake!") At least this request was a little easier to understand than last year's cake.

We had the usual party with all the friends at the beach. It was SUPER windy this year, so most people had cleared out of there. Which left all the seagulls to us. I had bought little squirting animal toys for the kids and they were playing with them in the water. Suddenly, we realized some seagulls kept flying over them, then Chris yells out, "There's only one other thing that is that color - Cheetos!"

Dante got lots of books, a Mr. Potato Head set, a cool game he loves - Cariboo, a new "big boy" Lego set, and I even found him....yes, you guessed it - a Big Bird Ball!

This Spring has been a whirlwind of shuttling kids around and both of us working a lot. The time got away from us, so we finally scheduled Dante's CT scan (1.5 year mark) for this week. If we get another good reading, we will get his medi-port removed. I thought we would be going crazy not having more checkups, but we haven't been to the oncology clinic since January and I sure haven't missed it!

On a related note, a dear friend of mine from work, Steve, lost his battle with pancreatic cancer this weekend. I will sure miss all his stories and positive outlook. One of the last times we talked, he was telling me that he was going to have a serious talk with the oncology doctors about how they shouldn't tell people that there is no hope. He didn't want to believe it. He outlived all their predictions and kept on fighting all he could. He never complained, he just kept trying to figure out what else to do next. The newspaper today had a brief article about a celebrity with pancreatic cancer and how it is the deadliest of the top 5 cancers, with most people not living a year after diagnosis. Steve had been fighting for 2. Go Steve!

It all makes sense now

2008-04-05T22:00:00.016-04:00

Several years ago, I found myself wondering, "Did I do something wrong?" "Why don't I ever hear from my good friends anymore?" Now I get it. Completely. They had young children and worked. Now I know that I didn't do anything wrong, it's just near impossible to keep up with everything you used to when you have 2 kids and are working full-time. I mostly talk to the people who care for my kids. I think about everyone and have been dying to update the blog, but by the time they are in bed and I get ready for the next day, it is not the top priority.
So, suffice it to say, if we had super big news - you would have heard from us sooner. Mostly, things are just moving along as it does with a 3 year old and a 21 month old. Do I need to fill in the blanks? :)

Dante now wears his hearing aids daily. As a matter of fact, he was using it as something else to fight about last week when he refused to remove them. He's had 5 months of almost non-stop congestion, cough and fluid in his ears. I went to a very helpful ENT doctor last month who said the tubes in his ears weren't right for him. He gave him some nasal spray and a device that is supposed to help you pop your ears, by blowing a balloon up - with your nose! It is very difficult to do and even I had trouble demonstrating...talk about a head rush. We aren't having much success getting him to use the nose spray or the balloon, but we're trying.

School is going well, still fighting us every morning about it, but having good days. He is reading so much now that it just leaves me speechless. He picks up books that I would never have him read and just goes at it. We have had several battles now, because he wants to stay up past his bedtime reading to himself (!). I took him to the library yesterday and we left with a pile. I always remember doing that with my mom, wondering just how many I could take with me.

Carina is doing great. She is very verbal and excited about all her new words. She has started singing on her own lately and saying "love vu!" all the time. She is trying to count to ten and wants to know her colors, but the only one she always gets right is purple. I had to finally break down and put her hair up out of her face and just couldn't resist the pig tails. Of course, then that meant that we all needed pig tails...

The update on the hearing aid purchase: North East Park Preschool had a very successful fundraiser and we were able to make the down payment on the aids with that. We now have monthly payments to make, but they are much smaller. Dr. Patranella and Melissa are trying to coerce the school board/insurance company to help cover some of the costs. Melissa tried the first step and that didn't work. The second step was for Dr. P to write a letter detailing everything. That was sent off more than a week ago, so we are waiting to hear back. If that gets denied, we have one last step to try and that is a phone conference with all parties present that we wish to plead our case. Even if they would cover all the adjustments and supplies and not the actual appliance, I would be happy, as that is half the cost.

We are looking ahead to May and our next CT scan and then planning to have his mediport removed if all goes well.

In the meantime, we will leave you with some pictures of what we have been keeping busy with!

Chillin' with Aunt Laurie at the beach and the cornhole game!

I think Great-grandma Yvonne was more excited about the Easter egg hunt than the kids!

Playdate at the park/fountains with Tyler and Gretchen

Anniversary dinner with Nonni and Gomma and Dante's favorite - spaghetti!

The Clear and The Green

2008-02-26T21:12:00.012-05:00

Is it the year, or are we destined to always have one family member with some sort of cold this year? It seems like as soon as we get over one, here comes another! Now we are all working our way through a particularly yucky throat thing, that many in our area are as well. When does the cold/flu season end? Summer? I forgot that last year we were so quarantined that we didn't have much of this at all!

We are now one week into hearing aids! Last Wednesday, we headed off for USF. Having no idea what to expect, I suppose it went pretty well. It is awfully difficult to ask a 3 year-old to sit perfectly still for so long - oh, and at the same time, don't talk too much and let us stick things in your ears that make loud noises...

Mavie and Dr. Richardson did their best to get the aids calibrated quickly. They first let us ask about a million questions...can you imagine all the little things that come to your mind when you have no frame of reference for what to ask about? how to care for? psychology of dealing with a preschooler? battery life? cost?....

It was actually pretty neat to watch. His "clear ear" (earmold color) went quickly. They play a recording of a man talking about carrots, yes carrots, and they play it at different levels. The computer generates a graph based on how his ear is responding physically to the sounds. The chart also shows his last audiogram results and the target decibels for the aids. Then they play a series of loud tones and on this ear, Dante didn't even flinch.

Then we switched to the "green ear". Maybe it was the cold he was working on, maybe it was the length of time we had been talking around him, but how easy it was on the first ear? all fell apart. I mean it wasn't terrible, but now we're battling keeping him still, the graph wasn't showing up right, so something wasn't right. He had some earwax in his ear that could have been causing it, but they figured out that the tube had been crimped that was testing. Then, when they played the loud sounds, it seemed much louder to me and Chris and Dante actually said "ow!". He said it 3 more times, so now we are quietly freaking that he will associate them with pain. Looking back it was not a big deal, but when you're in it - it feels like everything is going wrong.

In the end, we walked out of there with a pair of loaner hearing aids for 2 weeks to see how it goes...

That night, we talked him into wearing them through dinner. The next day, he showed them to Dr. P and Nonni and wore them for about 4 hours. Over the weekend, he wore them both days for the whole day! He doesn't touch them at all once they're in, but by dinner, he usually asks to take them out. He wore them to school on Monday and all went well! We totally lucked out, again. Ms. Johnson and his teacher for next year have taught (and are currently teaching) a student with hearing aids. They are completely comfortable with the whole taking them out and putting them in business. (More so than me, I think.)

We do have to admit that we thought for sure it would be like a magical cloak that he would put on and suddenly lower his volume and he'd stop banging on the table at dinnertime - no such luck. It's hard to notice a difference, since it wasn't obvious to begin with. And, of course, the week before we got them, I swear he started hearing better than ever. Maybe it was the fluid clearing up? Fluke? who knows. I do know that I haven't had as many instances of him mistaking what I'm saying. Now, if he would just listen! Oh, wait - he's 3!

This whole hearing loss is strange for us. I know we are working with professionals and they know what the testing means and what kids need to be successful. It's just a tough process to work your way through, mentally and financially, when the outcome seems so subjective? The tests are mostly based on him cooperating. (He's 3.) Everyone that meets him looks at us like we're nuts when we say he needs hearing aids. The key point that we've been told is that if he was an adult with this type of hearing loss, it wouldn't be a big deal. Since he's still forming his speech, having this type of hearing loss could cause problems with his speech and in school settings in the long run. So, we are trusting the professionals and hoping for the best.

Carina is doing great at her new friend Karlie's house a couple of days a week. She is not too happy about me leaving, but is always super happy when I arrive. She is, as always, her silly self, as seen here - trying on daddy's boxers...

I don't know why there are so many women out there straightening their hair...Carina (and Dante before her) gets SO much attention when we are out because of her hair. Every time we go to the store, some older lady accosts us. At the beach, she had 20-something men stopping to check her out...boy, are we in trouble.

Speaking of silly girls - I want to wish Madison Happy Birthday this week! :) (I know, I'm a slacker and haven't posted all those pics I promised. ) I especially like this one, because I can hear the kids saying "cheese!" Enjoy your day! Dante has been working on an art project for you...

(Dante, Megan, Madison and Carina over Christmas break.)

Gooey Fish in his ears

2008-02-07T23:00:00.001-05:00

I want to start with letting everyone know that Carina is back to her beautiful, clear-skinned self. (This first photo was her on day 8 - already the face puffiness was less, but in person, she was still mottled.) It lasted about 5 days full intensity, and then another 3 where you could see it was fading. It took another couple of days after that for her skin to stop being super sensitive. Poor little thing - but she handled it like a trooper!

(This photo was her today - much better!)

Dante went for his audiology appointment last week. Wouldn't you know it? More fluid in his ears! We went 3.5 years with no ear infections of any kind and now it seems to be non-stop. (I spoke to an audiologist for Pinellas County Schools and she commented that she has seen children post-chemo have lots of issues with fluid in their ears. She said that it can be tough to truly diagnose the hearing problems sometimes due to the fluid.) Dr. P took a look at Dante's ears the next day and did indeed see fluid and a start of some swelling, so here we are, one week into another antibiotic. Which, for Dante means another upset stomach.

Anyways, they went ahead and made ear molds for his hearing aids. "I had gooey fish in my ears!"(All you Mickey Mouse Clubhouse fans will understand that comment.) "I don't have bugs in my ears anymore!" (I think he was referring to the small disk they insert before the "goo" to pull the whole thing out.) Chris said they had all sorts of colors available for the ear molds, but he just went with clear and a hint of green to start. Maybe then we will move on to fushscia and chartreuse... We go back in 1 week for a fitting and our first introduction to the actual hearing aids.

The chart I made for Dante's classroom must be working pretty well. He had 3 straight days where his teacher said he was wonderful! One day, he was about the only kid who didn't need a timeout. He has been helpful and following directions. (Until Wednesday...he had a particularly rough day. Chris and I both think it was due to lack of sleep and his stomach.) Today he was super happy all day. (Of course, a day with Daddy and Gomma and Dinosaur World makes it easy!) Every night before Dante goes to sleep, he has me tell him a story about going to school. He loves these stories and gets excited to hear which snack or lunch I say is that day or what the book is that is read or what Yo Gabba Gabba character is on his cot...the past 2 weeks, he has added, "You have to tell about the chart too!" I'm glad he has taken ownership. I think between the chart and the telling of his day at nighttime, those transition times should get a lot easier.

Speaking of his school, wow...How did we happen upon such a wonderful place! The director of the school called us up last week and told us that she wants their Spring fund raiser to go towards Dante's hearing aids. Chris and I don't want to take away from the school and their needs. Mrs. Bonnell is a tough negotiator. She wants Dante to be able to get his hearing aids as soon as possible. She also said that it is important for people to remember to help others and a good model for the students to see in action. She said that the school wasn't in need of anything at this time. We compromised that whatever is raised will go towards his hearing aids, unless it goes over the actual cost. Then the extra will go into equipment and supplies for the school. We have been so blessed by this community that we have trouble saying thank you enough. Thank you!

Since the purchase of the hearing aids is imminent, I have spent many evenings trolling sites that list grants and such. I don't think I found a single one that we qualify for! Most of them are designed for people with no insurance at all. Well, I would think that having insurance, but one that doesn't pay for them would be the same thing, right? Maybe I'll try that angle. I found one, the Sertoma foundation, which I will be filling out the application for this week. I did call the school board contact for Aetna. They told me the entire process for trying to convince the board to cover the cost. I can't start that process until I have the specifics of the purchase, model, etc. Once we do, we'll be moving ahead with that. Anyone have experience in this?

I'm excited about Dante's first Valentine's party at school. We got the list of all the kids in his class for their party/card exchange, so we will start making some cards this weekend. I think they are making a Valentine's breakfast - heart waffles, pancakes and candy! I totally wish I could be there. But, wait - 10 or more 3 year old kids with candy? Maybe I'm better off at work.

"When your family does something, they sure do it with flair!"...

2008-01-26T01:20:00.001-05:00

... A direct quote from our pediatrician this week.

Flashback, 2 weeks: Carina has her 18 month appointment. Finally, she weighs over 20 pounds (21 to be exact) and is generally doing great. Oh, wait a minute, she has double ear infections. (The girl hadn't complained at all! I guess it was a good thing we went to the doctor.) The check up wouldn't be complete without 4 vaccines. One of these, the MMR, was one I was dreading and purposely put off until now, due to how poorly Dante reacted.

So, we go about our business for a week or so, and we think Carina is looking pretty bad with 3 falls to her face this week on concrete. We schedule an appointment to have both kids ears checked to ensure that the infections have cleared up. While we're there, we are told that their ears look beautiful! (Whew). Oh, and look! Carina has a few small red dots - textbook reaction to the MMR shot earlier. "Expect it to last about 5 days."

That night, Carina is fussy all night long, with Chris and I going in to help her back to sleep a few times. In the morning, I turn on the light...Oh My! She is covered in tons of red spots - and not small ones either! She's also running a low grade fever. So, I call the office and talk to a nurse. "No problem, this happens. She won't be itchy, it just looks bad." By the time I get home at 4:30 in the afternoon, and she has been sleeping on and off all day, I am about ready to take her to the hospital - Her whole face is swollen and she's covered in hives! I call the office again, they ask around, talk to the doctor, " It's OK. Just give her some benadryl and tylenol. This does happen, but she will be fine." I feel guilty now for not pressing the issue, but I trust them. The benadryl does NOTHING to combat how itchy she is. We are up all night long and looking pretty scary. I call the practice in the middle of the night and was called at 6:30am with a "come in at 8."

Dr. Patranella walks in the exam room and says, "Wow. The nurses said it was impressive. Boy, when your family does something, they sure do it with flair! I see a case like this maybe once every 5 years." (great.) So, she gave us a prescription for a medicine that not only stops the itching, but should help the anxiety she has from it. "The good thing about measles is that it is very predictable. She should have this for about 5 days. Rarely it could be 6 weeks...but almost always 5 days....don't need to call or come in unless she has a 105 fever...you can sure count that she's not going to get the measles now!...imagine this plus a high fever and brain swelling - that's what measles are.(She had it as a child.)"

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The kicker here is that Chris and I were scheduled to go to Orlando for a business trip for 2 days on this day! We went ahead to Orlando and mom and Uncle Mike came to the rescue. She is doing better, but now her skin looks all mottled and scarred. It is smooth to the touch, but looks like she has scales of red and purple! I swear I just wanted to cry every time I looked at her. But, through it all, she was still being her silly self when she could be. Dante was apparently very nice to her the whole time ("Carina has polka-dots!") and she got to hang with Nonni, so life is good.

I guess we should have posted sooner about this next news: Dante had his one year CT scan..."See you in May!" Yippee!!!! His AFP came back at 2.3!!! All good signs. We weren't as excited this time for a few reasons. The way the results were written up made it sound not so good, even when it generally was. We met a new oncologist, who seemed nice, but doesn't know us at all and told us to come back in 6 months. The other 2 doctors had been saying it would switch to 4 months, so that made us a little uneasy. Dante has been having some behavioral problems at school, and they seem to be related to his hearing loss.

We're scheduled for an audiology appointment this week. He'll have ear molds made and have a different type of hearing test performed. The last test we had was such a drop off in his hearing that we were all shocked. Then 2 days later, we find out he has an ear infection, which means those results are probably worthless. He's definitely having a harder time telling what people are saying, unless they're looking at him or the room is quiet. He does a pretty good job of interpreting, but I catch him on things like- me: "...weekend." Dante: " sweetbay?" Most of the incidents at school have been during transition times, which makes me think he's not hearing all the cues to change modes. I made a visual chart for his class of their daily schedule to hopefully help with this. I also found out that he qualifies for some assistance through the public schools, so I will be researching that as well.

We will be moving forward with hearing aids at this point. Funding is an issue that I am trying not to think about. They are expensive and insurance does not pay for them. The program I was shown to apply for assistance to have them paid in full? I make $2000 more than the qualifying income. Bummer. They are going to give us a loaner set at first to get him used to it and try it out. In the meantime, we'll be trying to find some other organizations that assist in paying for them.

On a more positive note, tomorrow we are off to a Gasparilla party with the entire crew and then Ryan's birthday party on Sunday. The kids are still happy and making us giggle everyday with new quotes. "When Carina is grown up like me, and has blue eyes, and new shoes, she'll be able to use the potty like me!" "With your hair combed like that, you look just like Uncle Mike" " No, I don't, because I'm naked."

Here's To A Great 2008!

2008-01-01T22:37:00.000-05:00

Happy New Year everyone! Our run up to the holidays was hectic, but enjoyable. Since school didn't let out until the 21st, it didn't leave a lot of time to get ready, but that was good - not as much money spent! The best part is that we have so much time after Christmas to relax and enjoy time with family and friends. My mom often talks about the year we celebrated Christmas a week early and how relaxing it was. Everyone else was rushing around and we were done and just hanging out. We even all went out as a family a day or two before Christmas to eat and play together. Just what it should be. This year was pretty close to that.

We decided to go ahead and give Dante a haircut. His hair was adorable but getting a bit crazy. The one day we had the heater on his hair straightened and you could really see how long it was; and the mullet-do was coming through. Aunt Laurie came over and did a great job of making him look like a big boy. Now, everyone keeps asking what happened to his hair. It grows so fast, I'm sure it will be crazy again in no time.

This year Dante was a huge help in making cookies. He took his job very seriously measuring and mixing and making sure all the reindeer cookies had antlers...I went a little crazy and made 6 different kinds of cookies and had designs on others. I just couldn't decide!

While we were making cookies, I noticed that Dante was especially non-responsive when I would give him directions. Now, I know that he's 3 1/2 and all, but I would even say "m&m's" and he wouldn't respond. (Dr: "Wow, that's actually a pretty accurate test of a 3 year old's hearing.") We were all starting to get mad at him and then I realized that he was not just doing it on purpose. We were starting to get worried, since his hearing is already diminished. He and Carina had also had a nighttime, and sometimes daytime cough, since around the 15th. So, I took them to the doctor and sure enough, Dante had fluid in his ears and the doctor said that was why he was having trouble hearing. So, both kids were put on medication to improve the infection and it seems to be working. Now only the typical 3 year old ignoring is happening....

Dante has been super cute all through December. "It's Christmas-time at school now." "It's Christmas-time at home." "It's Christmas-time at Nonni's house." "Is it Christmas-time at Jen Palmer's house too?"

We did our new tradition of driving around to look at lights on December 23rd this year. Dante was hysterical - "Look at that!" every 20 seconds. My mom and I were starting to get silly - "Look Dante - brake lights! They're red - Look at that!"

We had Christmas Eve dinner at our house with Chris's yummy spice-crusted salmon with lime-orange salsa...mmmmm. And of course, lots of cookies for dessert! The kids got some new Dora and Sesame Street ornaments and were very excited to add them to the tree.

Dante's present to us was that he slept in. We went into his room on Christmas morning and he was sitting in bed reading a book!

The day of presents started from there, but it was pretty tame for a while. Carina was happy with her Sesame Street magnadoodle and Dante was very excited about his battery-powered Percy and bumpy track! They played well together most of the morning. It was funny to see how they gravitated towards each others gifts instead of their own all day long.

Carina would have been happy with just her new pajamas or socks that she was showing off to all.
Dante got 3 new shirts and every time he opened one, we had to help him change his shirt.

I know that many of us get caught up in buying on Christmas, but I was glad that we didn't go overboard. They were having the time of their lives playing with the new toys and it was more than enough.

The real craziness started when we first went to Great Grandma Yvonne's house to open presents, and then on to Nonni's house afterwards for Christmas dinner and still more presents. Nonni had a play cottage/kitchen for Carina and a Diego tricycle for Dante. They were just going nuts and having a blast! We got to spend Christmas with Uncle Mike as well, so that was fun for all.

The next day Aunt Melissa arrived with Hunter, Madison and Megan, who we hadn't seen in a long time. It took next to no time for both our kids to warm up and never leave their cousins' sides. It was a fun visit with tons of play time. We played with the cousins' Wii that they got for Christmas, went to the beach, had a cookout, played some Candyland and other games and just hung out. Boy, was it nice to have a break from the constant watching of the kids when they were around! They were so good with them.
We went to dinner and Megan took care of Dante, helping him make a mess with spaghetti. I know it was driving her crazy, but she stuck with it. Hunter and Maddie advised Dante on his computer game. My back got a break from carrying Carina too! They are getting to be so grown up and all have great personalities. (If not a little too attached to their cell phones...) We sure do miss them and hope to see them again soon. (Nonni has a bunch of our photos of their visit, so I will add them later!)

On New Year's Eve, we got to get together with some good friends at the WMNF New Year's party with Trombone Shorty and Orleans Avenue, a young group from New Orleans that had the whole eclectic crowd on their feet throughout the night. Even Dante had an eventful New Year's Eve/Day spent with Nonni.

Upcoming events this month - Dante has a CT scan (one year mark) mid-month, as well as some other tests for follow-up. Also, new audiology tests and fitting for hearing aids soon. Carina has her 18 month appointment next week. We'll keep you posted!

Celebration of Life - Volume 2

2007-12-16T21:38:00.000-05:00

This was a busy weekend for us party-wise. I know, everyone has holiday parties to attend, but ours had special meaning.

On Saturday, we had a party to celebrate one year since Dante's last chemo treatment! It was also an excuse to get together with friends and family at holiday time as a thank you for all of their support, hang out for a couple of hours and watch about 20 kids run around the yard having fun! As I looked around at all the chaos, I was pleased that no one's kids were crying.... except ours! (Dante had a couple of minor playground mishaps - no biggie.) Carina hung out with all her other "moms", cupcakes were smeared on many clothes, and the mimosas and bagels were delicious!

Thanks to all who came to play!

After that, we were all pretty pooped, but Dante wouldn't give in for a nap. The kids were in bed by 7 and slept good through the night.

Today, we went to the American Cancer Society's Holiday Party for all the kids who go to the All Children's Pediatric Hematology /Oncology clinic. It's a big affair at the Vinoy, catered by Publix. ("How do we know that guy?..." "...Isn't that the bakery manager at Publix!?") There was Raymond, from the Devil Rays dancing and leading a conga line. (Interestingly, they had everyone hold on to a long roll of paper towels instead of any other actual people. Ahh, how soon we forget the days of having to keep away from cooties.) There was face painting and balloon animals, games and music.

And of course, Santa. They have Santa come in and he personally hands all the kids and their siblings toys and they take photos for you. Dante got some Thomas the Train track that he was very excited about. Carina got a little baby doll with bottles, that we will now never be able to get out of either of their hands. (Luckily, there are 2 bottles.) Dante also got a Power Ranger blanket and a stuffed animal for Carina.

I recall going last year and being so overwhelmed at seeing all the people that were going through the same thing as we were. This year, we met 2 families that are about where we are and super thankful for it. They both had kids that looked great and were about a year since last treatments. The 2 boys next to me looked so happy and spirited and excited. The mom was telling me their story and it was just unbelievable to hear what they had been through and have no idea from looking at them.

Through both events, Dante seemed to have no real idea of what the big deal was and why we were celebrating him. I think he just thought it was all part of the Christmas-time thing. He has specific memories of the hospital and obviously knows the clinic very well, all positive memories. He recalls not having hair, but no idea why. I don't think he has any idea how sick he was, because as a toddler, you can't understand or have no context to put it in. It just is. Which was kind of how we approached the whole experience anyway. I think I would like to keep his memories just the way they are now. All happy, just hanging out with fun people at different places.

A Thankful Holiday

2007-11-21T22:58:00.002-05:00

We hope everyone has a wonderful holiday with their family and friends! We're happy to get to share our holiday with Uncle Tommy, Gomma, Uncle Dave, Mom, Chris and hopefully Uncle Mike as well tomorrow.

I was about to say that I am thankful for 2 healthy kids, but both of them are sick! They have some yucky virus. I was all set for a week of playdates, but had to take Dante to the doctor instead. Whatever it is, it had caused Dante to cough really bad and start wheezing. So, he is on an inhaler until that subsides. Other than that, both of them have upset stomachs, so they aren't eating much and aren't very happy about it. I sure hope it passes quickly, although I hear from many people that "it" is going around...

I will gladly take this entry over last year's anytime...

Life with the Kung Fu Master

2007-11-21T22:11:00.000-05:00

(For posterity's sake, let's pretend we wrote this 3 weeks ago, OK?)

Last year, we just ignored Halloween, we had too much else to focus on. We decided that maybe it was nice to not let the kids get all whacked out on the candy this year as well, so no trick or treating for us. Now, those of you Halloween fans out there, don't think we don't enjoy the holiday. We just figured they needed their rest, so did we, and as long as they got to dress up and have some candy, we were good. We also didn't need candy around the house for the next month.

Dante wore his yukata that Uncle Tommy brought him this summer. Whenever someone asked what he was, he would say "Kung Fu Master!" and he would try to do something with his arms and legs, not really knowing what we were doing when we tried to show him. Most of the time, he was trying to say "rock n' roll!"

Carina got to wear Dante's former monster costume (that he wore at 5 months.) She was very cooperative for the most part, but once the headpiece slipped off, she wanted nothing to do with putting it back on. Of course, it was super hot that week, so she wasn't in the suit for long before she was overheating.

All was good, because we got to attend a good friend's Halloween party. Lots of kids and adults dressed up. Dante and Carina had a blast and Chris and I won a costume contest!

At Dante's school, they had a harvest party on Halloween morning. Chris went and helped out and got some adorable photos of the kids in his class walking through to all the other classes.
I can tell by some of the photos that Dante was totally confused at what was happening, but having fun anyways.

(His buddies, Jayesh the kangaroo and Cyler AKA Scooby Doo, waiting for the class.)

Chris spent most of those 2 weeks around Halloween working on the neighborhood Haunted Hike. That gave us another excuse to get out and see decorations and people dressed up. (And another chance for Carina to point out the festive pumpkin on her shirt.)

We had a good time, even went 2 nights in a row. The kids thought it was pretty cool to be out walking in the neighborhood at night. I was just surprised that neither one fell asleep! (or maybe I was just hoping too much for that...) We were coming off of Chris being out of town for a week and some doctor's appointments, so October is a blur for me.

Comparison Chart

2007-10-07T20:57:00.000-04:00

Carina had her 15 month appointment with Dr. Patranella this week, so we asked if they had received Dante's AFP, since we hadn't heard yet. They did have it - 2.4!!! Yea! (Normal range is between 0.5 and 7.9) That was the report we were waiting on, since that test would find tumor markers in his blood, in case something was missed on the CT scan. Did I say Yea!!!??? Go Dante!!!

Carina, by the way, had a great checkup. As a matter of fact, Chris and I couldn't think of a single thing to ask about her! With Dante (perhaps being the first? or more high-spirited?) we would ask questions forever! Anyway, she is just now 20 pounds and 30 inches tall. I looked back at my notes. Ready for the differences between the two in size? At 15 months, Carina is the same weight that Dante was at 5 months, the same height that Dante was at 10 months and the same head circumference that Dante was at 4 months! Can you say she's a bit petite compared to him? Even so, Dr. Patranella is not concerned, as she has been consistently in these ranges and she is healthy. I put Carina in an onesie on Saturday that I have a photo of Dante in at 4 weeks! At least we don't go through as many clothes with her as we did with him.

Apparently, she is talking at an 18 month level, which is cool to know. She has been trying to say "Dante" and isn't having much luck. But, this weekend, Chris heard her call him "Bubba", which has always been one of our nicknames for Dante

Sadly, our digital camera just died. We have sent it in for possible repairs, so in the meantime, all I have is phone photos!

"I'm all better now."

2007-09-26T22:49:00.000-04:00

I think this is the longest we had to wait for CT results...

"No new masses are identified. ...no new or enlarging lymph nodes identified. ...Normal chest CT with contrast. ...Collapsed L2 vertebra, unchanged. ...No interval development of pelvic or juxta-aortic lymphadenopathy" HUH? In other words - Nothing to report!!! Now we just need to get a good AFP test result and we can breathe a little easier for a while.

While reading the CT report, I was reminded of just how much disease Dante had when he was diagnosed. When they do the reports for this type of scan, they constantly reference the most recent scans, so that they can compare measurements. The start of the report listed all of the areas of previous concern. Dante had a large tumor in his pelvis that had extended to his back, possibly causing a compression fracture of his L2 vertebra, tumors in his lungs, chest and all the lymph nodes in his chest and groin. And we had no signs of any disease until he slipped on the playground and burst one of the lymph nodes in his abdomen (which was completely horrifying to look at)...

Dante did excellent on Monday! He was a real trooper. All the nurses were happy, as always, to see him and he did his usual entertaining. He cried when he got his port accessed, but only for a few minutes and then he said, "I'm all better now." The anesthesiologist gave him a little bit of Versed and he did the test like a champ. Of course, when they first give it to him, it renders him completely limp and useless, so that helps. I asked him at one point what type of bagel the CT machine looked like and he was trying his hardest to slur "cinnamon raisin". It doesn't take too long after that before he comes back to life, and then he goes from super happy and silly to major cranky.

We were happy to see Dr. Grana at the clinic. She always takes so much time answering our multitude of questions. She even gave us tons of documentation about Germ Cell tumors and late effects of chemotherapy that we hadn't been able to find online. We learned that the particular type of Germ Cell Tumor (Endodermal Sinus) Dante had was much rarer than we thought. Therefore, there's almost NO data to refer to regarding the future, except as it applies to all GCT's. Also, due to his protocol being relatively new, it's nearly impossible to find long-term outcomes. Dr. Grana seemed to think that the only effect Dante will have to deal with is the hearing loss. The greater risk of leukemia that we were previously told is true, but really, just barely more than anyone else's risks.

So now that we have just about cleared the 9 month post-treatment hurdle we are looking forward to the possible side effects / late effects. It's a strange sort of feeling - wanting to learn more about all the bad shit that can happen. But we find that we feel much better about everything when we know the possibilties. Being taken by surprised with this sort of thing is just about the worse feeling you can imagine.... only worse. That was how it felt when Dr. Patranella first told us that he had a tumor - late one friday night, after we had finally gotten him to sleep after a horrendous first CT scan. Wondering how a fall on the playground turns into stage IV cancer (it doesn't, but you're not exactly thinking clearly when the dr. tells you your 2 1/2 year old has cancer.)

At every turn, for the next 5 days or so until diagnosis, it seemed to get worse and worse as we were informed of all the possibilities. It was at that point that we decided it's better to be armed with knowledge than taken by surprise. And that's how we proceed now. Sometimes it lands us on the "picky list", and sometimes there are people doing good work who feel a bit put out by our approach, but at the end of the day we are the one's responsible for getting him better. Especially when there is no other acceptable outcome.

Installing the package

Wrapping it up.

Sending it in.

Everybody smile for the giant spinning radioactive magnetic camera!

Looking for good numbers.

Hello?, Anybody home?....

2007-09-23T20:57:00.000-04:00

Yes, we are here. And no, we didn't stop writing all together. I have been dealing with a nasty upper respiratory infection on and off for a month, so writing is not at the top of my list - sleep usually is the priority.

Let's get caught up!

Dante has a CT scan tomorrow, Monday. This will be our 9 month post-chemo scan and AFP. Please melt some ice cream if you happen to read this in time! We are, naturally, hoping for an excellent report. This is the milestone we've been waiting for. Germ Cell tumors most likely recur within the first 6-9 months, and the rate of recurrence drops significantly after that point.

If we get a clear scan, we'll also schedule to have Dante's mediport removed. The scar for his port is hypertrophic (not quite a keloid) and Dante's definitely aware of it being there. I find that he rubs it when he is nervous or tired. Not sure of the significance there or if it just itches!

Dante also had a hearing test last month. The results were not expected and added a darker cloud to our "anniversary" time. It seems that since his hearing test in May, Dante's hearing has decreased. He has moderate to significant hearing loss in the upper frequencies, particularly 2KHz, which is where most speech resides. The doctor recommended hearing aides. We have noticed a difference in him being able to recognize subtle sounds we make or subtle differences in words he seems to misinterpret. His volume has increased a bunch - but we think that's just because he's 3! No one else really notices, but if you say something and he isn't fully paying attention or watching you, he repeats things incorrectly. We have decided to wait until his next hearing test and next speech and language evaluation in November. At that point, if his speech has more than age appropriate mistakes, we will move ahead with hearing aides. We would love to stall that as much as possible, plus we aren't sure if it's still dropping or if it has plateaued. I know this is minor in the big scheme of things, but we can still hope for perfect, right?

Other than that, Dante is great. He loves school and his new classmates in the 3 year old class. We threw him right into underwear and he's doing pretty well with that. Although he is still being a little stubborn at home, he is fully in underwear until he goes to sleep for the night. He is apparently not the best behaved kid in class, but he is improving. Ms. Vicki mentioned he was being stubborn about some things and I laughed and told her that when he was 6 weeks old we asked Dr. Patranella about his stubbornness and temper.

At home, Dante is reading like a fiend! He reads signs while we are driving. I caught him trying to read the subtitles at Nonni's house the other day. He just loves it and wants to learn more all the time. He is starting to learn to write his name, which he writes SO large that I am running out of paper! (Thanks to Cousin Debbie and the magnadoodle, we practice a bunch!) He's also a bit obsessed lately with learning the states and where they are. I bought a US State placemat a while back. When we went on our trip this summer, we showed him where we were and that was it - he was hooked. Chris is starting to teach him some capitals, but I draw the line at having him learn the highest elevations in each state!

Dante and Carina now have a daily love fest around here. The two of them are constantly hugging and playing and giggling together. It's pretty funny to watch, after how they used to just battle all the time. Today, we were all building a lego house. There is a little lego man and every time Dante would place him somewhere, Carina would look right at him and grab it, knowing fully that we would yell at her and grab it back. She just kept doing it. I had flashbacks to the torture I put my sister through doing the same kind of thing! (I'm sorry, Melissa! LOL)

I have been working on cooking with Dante lately, having him help measure and stir when possible. One night, we made homemade fish sticks, which was a fun time for all. He loves hummus, and making it. So, now, everything is "Garbanzo___" (insert Dante, Daddy, Carina....)

Stay tuned for an update later this week after we get our test results from tomorrow.

Thinking about a year ago...

2007-08-20T22:59:00.000-04:00

A year ago this week, our family's lives changed forever.

Even though we are doing great right now, it's tough to think back to what we have been through. It is also difficult to feel like the burden will ever truly be lifted.

We are so thankful for our wonderfully special son and his spirit through all of what he has had to put up with. We are continually thankful for everyone out there that lent their support, sent their thoughts and prayers (and numerous baked goods!), and continue to think good thoughts and ask about Dante. This past year has brought us closer to friends and family and made us reevaluate priorities in our lives.

(This is Dante eating "zeroes" - Uncle Tommy's onion rings! He had never seen them before and asked to have a zero.)

We were told at his 6 month "all clear" point that we could have his mediport removed. We decided that we were feeling a little superstitious and will wait until the 9 month "all clear" before having that surgery. We are scheduled for that CT scan in mid-September.

Dante had his first completely normal CBC at his July oncology visit. His hemoglobin took a long time to recover. We had several tests run to make sure it wasn't something else, but they all came back negative(which is positive). The ANC from August was down a bit to 2900, which is the lowest it has been since February, but it is still within the normal range.

At the last oncology appointment, when asked about late effects of chemo, Dr. Barbosa said that because of the Etoposide (one of the chemo drugs) Dante has an increased risk of a secondary malignancy. Not that his tumors might recur, but that he might get another form of cancer, like leukemia. We knew all along that there are risks to chemo, and the laundry list of side effects from the Cisplatin is testament, but we wouldn't have done anything differently - couldn't, really, since there isn't any other protocol for Germ Cell Tumor; But man, that's hard to hear. You just want them to say, "You're done! He's cured! You shouldn't ever have to worry about cancer again!" I don't think those phrases exist, but it sure would be nice to hear them.

I also wanted to thank all of you that are still checking in on us here and following our story. This blog has been cathartic for us to share our experience and be able to stay in touch with people when we just didn't have the time to talk. I know that the posts have been fewer lately, but we are still recovering from vacation and I am back at work for another school year.

Where You Been?

2007-08-07T22:53:00.001-04:00

"Who me? I've been on vacation. Where YOU Been?!"

"Where'd you go?"

"Uhhh, I'm not sure but we were in the car for a LONG time..."

"...oh, and we saw Uncle Tommy and Grandma Yvonne..."

"... and Grandpa and Ms. Linda...

"... and a whole bunch of people I don't know, but apparently we're related..."

"... and there were all these REALLY tall buildings..."

"... and we saw art (at MOMA), well, I'm not exactly sure what art is, but then who is?..."

"... We met some new friends that belong to one of Daddy's old friends..."

"...oh! and then we went to the Bronx Zoo and saw all these cool animals..."

"... and we went to this lake A LOT, because it was way hotter than it should have been..."

"...Then we were back in the car AGAIN!, but this time it was short - some place called Vermont, or something. There was a party. We met more friends. It was REALLY fun..."

"... and on the way back we stopped at a farm and got to feed some animals..."

"... and ride some animals..."

"... and saw more art ..."

"... and ate "Lob-Stahs"..."

"... and rode on a steam train..."

"... and made poopy-faces..."

"... and rocked out in silly outfits Uncle Tommy brought from Japan..."

"... and ate cheeseburgers and ice cream..."

"... and got sleepy,.....and giggly..."

"WHOOH!!, I'm pooped! I need a vacation!..."

Holy Crap! I'm a year old!!...

2007-07-11T09:28:00.000-04:00

...Yes you are Applesauce! And you're already walking and talking. Boy, are Mom and I in trouble....

<- 0 to 1 in 12 short months ->

By the way, you're not getting out of the house until you're 25...

Happy Birthday!

Where does the summer go?

2007-07-07T23:23:00.000-04:00

"This summer, I am going to get so much done!" Famous last words. I say them every summer, thinking that for some reason, the stars will align this year for it to become truth...

Chris and I have mentioned to each other in passing for the past couple of weeks, "Hey - we need to post on the blog", but every time we say, "What have we been doing?"

Preschool, swim lessons, planning for Carina's birthday, celebrating Uncle Mike's and Chris's (nephew) birthdays, planning for a trip, getting mild summer illnesses, cleaning house, and the day to day life with two kids? That's what we have been doing!

Dante is just amazing. When we pick him up from school, he is all smiles and can't stop talking about his day and all of his friends. One night, in a stream of consciousness rambling session before he fell asleep, he said, "..and my good teacher that I have, Ms. Laura." He just loves her and her class - it's been a great fit for him to transition back into school. He's getting close to potty trained, as he can stay dry all day...just needs to figure out the rest of it. (This is a photo of Dante showing us his Diego underwear!)

Swim lessons are a highlight of the week. Dante is really coming along well and almost putting his head under water. He's made some friends in class and doesn't ever want to come out of the pool.

We're having some sibling issues, which I assume are typical, but that doesn't make them any less frustrating. Dante and Carina love to be around each other. Carina will start yelling if you try to make her leave the room wherever Dante is. Dante follows Carina's lead, which we just love when that lead is screaming in the car! Our problem lies with Dante getting excited and then trying to assert himself in a not very positive way. We'll figure it out, I'm sure, but not before many, many timeouts and tantrums.

Carina is all sass and girl and just a ton of fun. She loves shoes and is always trying to put them on, or throw them all around the kitchen. She is walking all over now, and quite fast. She's very enamored with the cabinets that don't have safety latches on them, and goes immediately for them when given the chance. She is always instigating Dante to laugh or wave his arms in the air (like you just don't care) while yelling. She now says: duck, ball, down, daddy, mama and Dante. Her sign for milk has come to mean - give me whatever you have that I want. It's pretty amusing.

Aunt Laurie and Robb had their usual fun-filled July Fourth party. I think we were in the pool for 4 hours and Dante still didn't want to come out! The cannonball contest was the hit of the night, with Dante asking, " Who's going next?" (I think next year Uncle Dave and Chris need to join in.)

Robb made some delicious burgers on his new grill and I'm almost positive that Carina ate an entire one by herself. We went down to the see the fireworks and had some tired kids on our hands on the way home.

We have had a good summer so far, but still feel like we should get more accomplished on the "to-do" list when I'm not working. I guess one of the things we have done on that list is spend time together.

This week, we have a 1 year checkup for Carina and also an oncology appointment for Dante...and preschool and swim lessons and celebrating Carina's birthday!

Officially Official

2007-06-26T13:50:00.000-04:00

Last week we got word regarding Dante's AFP: 5.9 (below 7.9 is normal). This, coupled with the clear CT scan, and being 6 months out of treatment means that he is officially in remission! It doesn't mean he's out of the woods yet; another 6 months or so, before the odds of recurrence are infinitesimal. It is, however, the first real benchmark of progress towards that goal.

It seems like a lifetime from those first few days of terror when we had no idea what was going to happen. When all we wanted was for the doctors to give it a name so they could start treating it, and for the surgeons to cut out as much as they could.

Remarkably, Dante was able to stay on his chemo schedule and became one of the only patients to make it through his protocol without any infections or other setbacks. Originally, when I asked, Dr. Grana said his treatment would take 6 to 9 months because the chemotherapy was so aggressive. Dante made it through in 4 months. Not like it was a walk in the park. On the contrary, just about every day after the second round, Dante got sick. He stopped eating. He received half a dozen blood and platelet transfusions. He needed daily injections of GCSF (boosts red blood cell production), and he lost some hair...

But through all of it, he managed to smile and be silly. He was (and still is) happy to see the nurses and staff in the clinic and at the hospital. And regardless of how bad it could seem, we were always aware that it could be worse. Often, in the next room or just down the hall.

At the last visit to the clinic, we were speaking to Dr. Barbosa about odds of recurrence and he mentioned the treatability of Germ Cell Tumor, and how he had just gotten back from seeing another boy about Dante's age who has GCT. He had a large tumor in his brain. After 1 round it was gone. "Just melted away. Pfhhttt!"

We've been keeping busy with swimming and school and trying to stay cool in this awful heat and humidity this summer. Dante and Carina have been very happy kids lately, with maybe a bit more energy than we are used to! It's a nice problem to have, though...

Getting on the "Picky List", and other not so dubious accomplishments.

2007-06-14T23:09:00.001-04:00

As we take our walk down the hallway towards the area where they prep you for the CT scans, Dante was very excited to be at the hospital and going to the doctor's office later and was naming all his friends he would see there.

We had to first catch up with Amy and be sure to give her a hard time. Dante was amusing them as usual by doing his animal sounds. Everyone's favorite is when he says, "What does a seahorse say?" and then he just bobs his head around as if he were a seahorse.

Since it had been 3 months since our last port access, Dante was not very pleased to put the numbing cream on this morning, so Daddy put a smiley face on it for him.

He fussed a bunch when Lettie was putting the port in, but the crying stopped as soon as she asked him if he wanted to help push the flush into the line.

We learned on this visit that they do not want to use his mediport in the future for CT scans, as the contrast they have to send through it is risky. We convinced them that we were going to use the mediport this time and that on our next scan we would switch to try an IV...we don't want to even bring up the story of our first IVs in the hospital, suffice it to say, after 3 nurses tried, they had to bring in someone from the Transport Team (BayFlight) to get a line. Not an experience we wish to repeat.

Amy was convinced that this would be the day that Dante was able to have the CT without drugs...she tried blowing bubbles and everything (which is so awesome). I think he would probably lay still, if they didn't have to strap his legs down and his arms above his head, and move him back and forth through a giant, spinning, radioactive magnet... So, after some fussing and contradiction from Dante ("I no go in the big camera!") they pulled him out and we started over. Probably why we're on the Picky List.

After running some numbers and finding an anesthesiologist, they hooked him up with some Versed, and everything was just fine after that. Back in the tube and smiling even, as we sang some songs and held his hands.

Dante showing off his "red finger".

Here is Dante basking in the afterglow of the Versed. He is pretty funny. Amy told us if we had the same dose, we would have taken a nice nap, "because most of us would welcome a nap!" Then again, by the looks of it, maybe I wouldn't take a nap....
...just watch out for that comedown. Whoo, what a crabby-pants!

After a lunch break and a little down time at home, we were off to the clinic. Dante has grown 1.5 inches since the fall! We knew he was getting bigger, but wow! He was a little overexcited about going to the clinic and couldn't calm down enough to get all of his numbers. He kept bouncing on the scale everytime Nicole tried to adjust the weight, so it was jumping all over the place.

We had some labs taken, Dante's port deaccessed, and then saw Dr. B. Dante's CBC looks good. ANC 3600, platelets 180. His hemoglobin is still low, so we are thinking he just sits outside the "normal" range. Dr. B examined Dante and said he looked good. They had the CT results and......drum roll please....NO CHANGES! Yea!

Chris and I were commenting that we want the CT report that says, "Yea! You're clear! No Cancer!!" Unfortunately, they aren't written like that. The words used on this one were "no changes from the CT scan on 3/22", "the chest including the lungs is now clear and normal", "good evidence of recurrent tumor is NOT identified on this exam". but it concludes with "otherwise normal CT of the thorax, abdomen and pelvis." - Good enough, we'll take it!

Summertime rolls.....but more news soon.

2007-06-12T20:45:00.000-04:00

I realized that we must really be caught up in the whole summer thing, because we haven't taken any photos since Alligator Point. We have been busy every day but at the same time, not much new to report on this week. Except...

Carina turned 11 months yesterday and decided to just walk all the way across the house! She had been taking one or two steps, and then all of a sudden - she's off! She also climbed out of the tub tonight by herself (I should say slid out into my arms), so we definitely need to keep our hands on her!

Dante is doing great in swim lessons - really enjoying it. We took him to Aunt Laurie's pool on Saturday and he didn't ever want to come out of the water. (Unless there were m&m's involved). Then we went to the beach on Sunday and had a great time. I think just getting him more comfortable with the water is helping and he should be swimming in no time! I tell you what though, I could sure skip sitting out on the hot pool deck sweating and looking longingly at the water while he is in lessons!

Potty training is going well. He's been doing great at school and home and filling up his chart with stickers. Mommy and Daddy don't mind getting the ice cream treat for filling up a row either! We hope to transition soon into the Diego and Thomas underwear!

Dante has his 6 month post-chemo CT scan on Thursday morning. As you may know, this is the first real benchmark in his post treatment schedule, as the highest rate of recurrence with GCT is in the first 6 - 9 months. We are going to try to not sedate him too much this time, as that is very stressful. The last time we went, he did really well and only needed a "little something" to take the edge off. We will be going into the clinic for an AFP as well, so it will be good to have an update on where he's at. Hopefully all good to report by the end of the week.

So set out a bowl of the Haagen Dazs and think good thoughts...

No More Purple Medicine!

2007-06-05T21:12:00.000-04:00

Since the first round of chemo and for 6 months after, we have been taking "purple medicine" 2 times a day, 3 days a week. Dante has been just great about taking it and never minded at all. We were almost out so I called the clinic for a refill and Irene called back to say "Dante is done taking the Septra!" Yea! One more milestone passed, let's keep them coming! We have a CT scan scheduled for next week, so melt that ice cream if you think about it!

Dante had swimming lessons today and he did great! He got right in the pool and sort of paid attention. He let Ms. Walker hold him up to float on his back and even to pull out his legs to try and kick off the wall. Let's hope that he keeps it up! One cool bonus of going to swim lessons, is that I ran into an old friend who I have known since we were very young and all through middle and high school. As a matter of fact, I recall we had some pretty silly nicknames we called ourselves in middle school that I blush to think about! I ran into her and another old friend within 24 hours recently and attended my nephew's graduation at my alma mater, so I figured it was destiny...I have to attend my 20 year high school reunion this month.

Carina had a melt down yesterday because we lost "Happy Birthday Duck"...she doesn't go anywhere without it. Luckily, Nicole came to our rescue and we now have 1 plus 3 backups!

Dante had his first full day of preschool this week and seemed to do pretty well. He is going 3 days a week and then has swim lessons the other 2, so he will be a busy boy this summer! He is always excited to talk about school, but still puts up a fuss about getting dressed to go in the morning. Although, since Alligator Point, none of us has really wanted to get dressed much!

Back From An Escape To Nowhere...

2007-06-01T20:13:00.000-04:00

We just returned from a wonderfully relaxing week on the beach in Alligator Point. (Thanks Lyndall and Bolling!) No TV, no phone, no internet, no shoes, and (almost) no car rides. Just the family and Nonni and the beach. It was breezy every day and a perfect way to start off the summer.

Roughing it in Nowhere...

On our drive up, Carina had an epiphany...somewhere in between Dante telling her what whales say ("wooooo") and what dolphins say (a VERY loud squeak)...Carina starts yelling and signing "DAAAA", which means "duck!" in her language. It was super silly. She was holding up her birthday duck in one hand, trying to make the sign of a duck quacking with the other and yelling "DAAAAA". Dante couldn't stop giggling. She also mastered "uh oh" by the end of the week. She is working on signing milk, but has realized that whining says it faster.

It became clearer to me on this vacation that Dante is just not a super active kid. I cannot tell you how many times Mom read the Dora book, but I am sure she was going to have nightmares soon about the Mucky Mud Puddles, the Spooky Forest and the Big Red Chicken! (Although, even if we read the same books over and over, it was still really relaxing to cuddle with him in the hammock and read books.) He would play on the beach for a little while, but then he was content to go inside and play with his books and toys. There was an outside shower that we could all fit in and rinse off after the beach, so he was always asking to go in the "very very big shower" - it was pretty silly.

We found a cool kite the last couple of days and we all really had fun with that.

We didn't do much swimming, just wave jumping, because the water was pretty rough most days. Luckily the water is really shallow there, so we didn't have to hold him the whole time. When the tide went out in the late afternoon, we would always take both kids and play around in the water. Carina was like a little sea turtle, as soon as you would put her down, she just crawled as fast as she could towards the water. One day we were on a sandbar and she was just crawling right into the waves!

I realized that men and women must definitely think differently, or at least Chris and I do. We were building sandcastles in the perfect white sand that is there, and I was making sure it looked cool, while Chris was busy working his side job in hydrology making sure all the water coming in would flow properly to avoid damaging the castle. We ended up out there one night until quite late watching the slow destruction of the castle as the tide came in. He perfected his craft by the last day. Dante typically chose my castle to be the one he jumped on.

On our last full day there, we went to run some errands and to go see the Potter. (Been to Sopchoppy, Met the Potter) We told Dante what we were going to do and it became a little mantra he kept repeating. "Go inside, take a very, very big shower, eat lunch, go to the potters." We never even told him what a potter was, but he was very excited about it. The potter in Sopchoppy has a farm and some chickens that Dante checked out. We visited him 2 years ago and found Dante's photo on the wall from our last visit.

My goal on this trip was to finish a book and catch up on some magazines. Well, I read through almost 2 books and 2 magazines! That never happens around here anymore! We also had a chance to catch up with my Aunt Laura, Uncle Allen, and cousin Michela. They live in Tallahassee and also have a house out near where we were staying. All the girls escaped to Apalachicola for an afternoon and then they all came over for dinner one evening. It was great to see them. Dante took no time at all to snuggle right into Laura's lap and have her read to him. He even enlisted Michela into the Dora reading too! (We brought a bunch of other books, but he seemed to have fixated on this book that has 7 Dora stories in it. And the way he would ask you to read "Dora's Chiwwy(Chilly) Day?" was pretty irresistible.)

Our attempts at potty training made big strides this week. Towards the end of the time there, we just started having Dante walk around naked. Every so often, I would ask him if he wanted to pee off the deck. He would go out and everytime - he peed! He never told us himself, but it was a big step for him to recognize and try out peeing standing up - with his new and improved flow. Tonight, after dinner, I told him we were going to go sit on the potty and took off his diaper. The next thing I know he is in the bathroom, peeing in his potty all by himself! Let's just hope we can keep the momentum going this time!

Dante really had a great time, but by the last day he started to ask about going to "Dante's home". He was very happy to get home last night and excited to tell all his friends at school about his trip.

I could have stayed all summer long myself, but eventually I would probably wonder what else was going on in the world. or maybe not....

Happy Happy Birthday!.... Again!

2007-05-22T23:46:00.000-04:00

Well, considering the outlook 9 months ago, we figured we could extend the celebration over a few days, right?...

So this portion of the festivities took place at Ft. DeSoto, on what turned out to be a VERY crowded Sunday. Probably the last nice weather before the "tropical winter" sets in. But we managed to secure a spot under a shelter alongside a nice family from Polk County - brought their own gas grill on the back of the pick-up. Resourceful, no? I spent half an hour with the briquettes like some dude from Quest For Fire, meanwhile Zeke & Co. were grilling steaks inside 5 minutes. That's okay though. I take solace in the fact that charcoal makes burgers taste better no matter how old I get waiting for it glow. Well that's my story, anyway....

We had a nice little turnout and everyone seemed to have a good time. We had told Dante we were going to have a party at the beach and all he wanted to do was make a beeline straight for the water - well, we were at the beach, right? So let's go!

Everyone seemed very impressed with the cake, which was designed by the Little Man himself. The Publix bakery folks had to call twice to confirm the layout. Couldn't quite grasp the concept. "No, lots of little 3's all the way around. Yes, half of the cake blue, and half red. No just the numbers 1, 2 & 3."

After cake we all went down the beach for a little splashing and screaming, as toddlers (and, as it happens, not-so-toddlers) are wont to do in the water.

All in all, a good time had by all. When Jen arrived home we had two sleepy monsters sacked out in the back seat. Jen and I soon followed.

Dante and Tyler - double trouble...

Heather and Gretchen

Takin' care of bizness...

Jennifer and Ryan enjoy the beach.

_____________________________________________________

Monday was Dante's official 1st day back at preschool. Yet another milestone. Daddy's been waiting for this day for a long time..... We had a few preliminary visits the last two weeks, to reacclimate, but Monday went the best. I left for a couple of hours and Miss Laura, his new teacher, said he did great. Had fun, listened well, ate all his lunch. I asked her who was this kid and what had she done with my son? - I kid, I kid.

However, we do feel that this is a really big step, and there was considerable anxiety about his response to all the other kids. And sharing. And not grabbing. And sharing.

Since Dante has been out of preschool and pretty much devoid of regular peer contact for the past 9 months, there are considerable social skills that he is lacking but are evident in some of his friends that remained in school. He has a gap there that the other kids don't. But I expect he'll catch up pretty quick. And regardless of where he's at now, it's really great to see him out there with other kids.

One day, on the way out to the playground one of the other kids, a little cutie named Brooke, took his hand, and at first he was a little taken aback, but he held on and by the end of the hallway, he was smiling and jabbering away with her about going out to "play on the playset and swinging on the swings and climbing on the ladder and bouncing on the bridge and and..... "

So we are very excited about the past week and things to come.

________________________________

In Dr. news, Dante had a Speech & Language evaluation, and another Audiogram with Dr. Carr and the grad students over at USF (a really great operation and nice people). Both of these are ongoing and are side effects of the Cisplatin they used for chemo in his treatment. The S & L eval looked good. Age appropriate mistakes and no real obvious problems. Nothing that would immediately be attributable to hearing loss anyway. We were advised to keep an eye on how certain words and sounds develop, but no hearing aids recommended yet.
The Audiogram went well too, especially considering it was late afternoon. There is more hearing loss evident in the upper frequencies, but all within the same pattern as the earlier test (which occurred just prior to his last round of chemo). Dr. Carr seems to think it should level off now, but we'll be back in 3 months to check again.

So all around, no bad news, and everything remains on track.

And we remain cautiously optimistic.

Consider leaving some ice cream out just for good measure :)

All Better?

2007-05-18T21:22:00.000-04:00

Today, my morning wakeup call was from Dr. Patranella. She was calling with lab results that were negative for Giardia.
Me:"Well, that's good."
Dr. P: "Well, yea, but only if he feels better!"

Dante is much improved from last weekend. He has had a nagging upset stomach for the past couple of weeks, and of course, our episode last weekend. He has also been randomly itching all over. Dr. P said it could be Giardia or maybe a slight case of Rotavirus (but certainly not the same alien life form that infected Chris a few weeks ago - that was a horror show). We are still waiting on 2 other test results for other possibilities. I think that if he had it, it's run it's course by now.

The main reason we went to the doctor on Dante's birthday was that he had hardly been peeing at all! I kept wondering why he would never go when we sat on the potty or why he was flat out refusing to sit on the potty when he used to at least humor me. Then, I started noticing that his diaper was very dry for long periods of time. Well, we found out why and after much fretting on my part, everything is now fixed and on the track to recovery. He had meatal stenosis, which is a narrowing of the opening of the urethra. I convinced the urologist to see us right away and it took less than 2 minutes to "fix". He's a little tender, but much happier.

While at Dr. P's, we were asking all sorts of behavioral questions, because Dante has been so ornery lately. She started by saying, "Well, I think I would be cranky too if I felt how he does right now!" But then she proceeded to tell us that she refers to age 3 as the obstinate threes - Ding Ding Ding, we have a winner!

Carina is now standing up on her own and trying to take steps! She climbs everything. I turned around the other day and she was on the coffee table! The other night, she got her whole leg up and almost over the edge of the bathtub! It's pretty funny, because she is just smiling away and having a blast.

Three is the Magic Number!

2007-05-15T22:58:00.000-04:00

Happy Third Birthday Dante!

Just a quick note to let you know that Dante was officially 3 today. Chris took cupcakes to Dante's new class at preschool and he really seemed to enjoy it. After that, we headed to Dr. Patranella's to find out why Dante hasn't been feeling too good lately. We have some preliminary possibilities, but have to wait for some test results and have another appointment tomorrow with a specialist. And hey - it's your birthday - Here's your Hepatitis A shot!

I Call Father's Day

2007-05-13T22:05:00.000-04:00

On Saturday night, we had Uncle Dave come babysit so Chris and I could get out by ourselves for Mother's Day and for the first time in several weeks. Both kids were sound asleep when we left, so we thought it would be an easy night for Dave. We got through an enjoyable dinner and were on to our next stop to just relax and hang out. Two sips into a nice cocktail both of our phones suddenly registered missed calls. It was Dave - Dante had thrown up and was pretty hysterical. By the way, we had put him down in our bed so if either of the kids woke up, the other would stay asleep - we got that part right....

We rushed home and Dante was OK. He was sitting with Dave on the couch still whimpering a little bit. Even though he was out of his clothes, he smelled terrible. Apparently, he had gotten sick and not completely woken up, so he was in there for several minutes marinating in it before actually crying out and Dave realized something was wrong. We couldn't get him to get into the bath, so I just wiped him down and got him in new PJ's and back to sleep. We were on edge the rest of the night anytime we heard any stirring.

He was fine all day today, but didn't eat much. He actually has been acting as if something is wrong with his tummy lately, but not enough to get sick or stop eating. Today, I only fed him if he asked for food.

This morning, Mother's Day. All I really wanted was to sleep in an extra hour or so. It was not in the cards. Carina woke up at 6:30 and would not go back to sleep. Then Dante woke up and only wanted mommy. When Carina went down for her morning nap, I finally got Dante in the bath and he smelled much better. Everything seemed like it was going well...

Carina wakes up to a blown out diaper and a huge mess in her crib. While Chris is holding her at arm's length and I try to remove the offending clothing and get her in the bath, he strains his back. I get Carina all cleaned up and am still hoping for even a few minutes to myself today. Chris's back is hurting so bad, he has to take a muscle relaxer and go lay down. Meanwhile, we had planned to have mom over for dinner - cooked by Chris. That doesn't happen either.

So, the day ended up with Chris sleeping most of the afternoon and me and the kids going over to mom's to hang out. Dinner was take out and the one cooked by Chris will have to be rescheduled.

My mom said it never worked out for her to have a good Mother's Day and she always called Father's Day instead. I think that's a good plan.

Just Mommy

2007-05-09T20:40:00.000-04:00

Conversation with Dante leaving a restaurant tonight:
"Mommy, leave Carina at the restaurant."
"Daddy, you stay at the restaurant." ...it just got better from there, and louder... eventually, however it took only one bedtime song before he fell asleep.

The past 2 days, I think the whole sibling thing has really caught up with Dante. He has been super moody when Carina is around and keeps asking for her to go away. But, then in the next sentence, he is asking to play with her. Go figure.

Super crazy busy week coming up...Mother's Day, Dante's Birthday, Speech/Language Evaluation, 3 year old check up, Birthday Party, Swimming lessons and summer vacation!!! All of this mixed in with Chris booked half the week and the last days of school craziness for me. I am so looking forward to my summer vacation this year!

Checkup

2007-05-03T23:14:00.000-04:00

We had a doctor's appointment today at the oncologist's office. First one in 6 weeks. Dante was very good and super silly in the waiting room, singing and jumping around. Once he saw his old friends, like Lee, Darlene, Pam, Irene and Dr.Grana, he decided to go all shy with them, but he was obviously happy to see them. I really like everyone at the clinic, but someone who is strong on time management needs to have a sit down with them. Our appointment was at 11. I think we finally saw Dr. Grana around 12:45! We got into a room, but then we just had to keep waiting. Luckily, Dante was occupied with the ever handy "sticker book", which has saved us during countless clinic visits.

After all that wait, they decided to just do a finger prick CBC. His ANC is 4400. His platelets are up to 183. His hemoglobin is still low at 11.4, but much higher than during our previous visits. If you recall, we were getting concerned about how his hemoglobin was not rising. Dr. Grana said that she thinks his body is just taking a little longer to get his red blood cells back to normal. She thinks his immune system is back to normal and everything looks really good. We will have another CT scan in June, and at that time we will get another AFP test(tumor marker) done.

While we were there, I couldn't help thinking back over the past 9 months. We have met some really great people and our eyes were opened to an entire other existence that many people are living in daily. We are so thankful for how everything has turned out for Dante and us so far. We're also very thankful for all the people who we have met along the way. In the clinic today, there was a little girl Dante's age, Edith, who we always saw at the hospital and once shared a room with. She had so much hair, I didn't even recognize her! I couldn't stop staring because I didn't believe it was the same person and I was so happy to see that she was obviously healthier. I have also been closely following another friend, Sara, and just get goosebumps when I think about how happy I am about her progress. We have recently heard about a couple of kids that have lost their battle to cancer and our thoughts go out to those families.

When Chris and I first got the phone call from Dr. Patranella in August, telling us that Dante had a tumor in his pelvis, we thought our world was ending. We were so terrified that we didn't even want to discuss the thoughts that were going on in our head. It seemed to just get worse and worse until we had an exact diagnosis. From that point on, we proceeded with a different attitude and tried to not let those thoughts come to the surface. We were determined to stay strong for Dante. I am so thankful to be able to soon celebrate Dante's third birthday, that words cannot express.

Big Helper

2007-05-01T21:18:00.000-04:00

The last few nights when I am feeding Carina her bottle and about to put her to bed, Dante has been super cute and sitting at my feet reading a book. When I tell him it's time, he carries his book into our our bed climbs in and waits until I get there after putting Carina in the crib. He has calmly picked out books to read and told me what four songs we will sing before sleeping. Then he has gone to sleep after the fourth song.

Every other time that Chris has been away, this time of night has been very stressful to manage, because Dante wouldn't understand that he needed to be quiet so that Carina could go to sleep. Maybe something finally clicked. It has made this weekend much more bearable!

The past two mornings, I have been woken up around 6:45am to both kids singing. First, I will hear Carina babbling away and giggling and then all of a sudden, Dante starts singing and giggling with her. Normally, I would've sent them both back to bed at that hour, but they're both being so sweet and good that we just end up getting up and starting our day.

We spent last weekend catching up with old friends. On Saturday, we went to see Caleb to wish him a belated 3rd birthday. It's pretty amusing to watch 3 year olds "play". They were happy to see each other and I was happy to get to hang out with Tasha for a little while as well. On Sunday, we went to visit Tyler and Gretchen. Tyler and Dante had a blast playing in the pool and singing the ABC song together.

Gretchen and Carina just sort of eyed each other and went about their business of playing and crawling around. Heather and I also had a chance to catch up - as much as you can when you are handling two kids a piece. Dante was worn out each day, but very happy to have seen his old friends. We can't wait for summer when we get to do that more often! I used to work with both Heather and Natasha, so a playdate for the boys is really an excuse for a playdate for us as well.

(OK, a side funny note about the matching outfits on the girls. When Heather and I worked together, we were always asked if we were sisters. We would laugh and have no idea where they got that from. Similar freckles maybe? When the boys were born, they couldn't have looked any different and we were always asked if they were twins! I couldn't resist when the girls were born to buy them matching outfits anticipating that question again. )

I am thinking more and more about Dante's upcoming third birthday on May 15th. Kid's birthday parties can grow exponentially somehow and take on a life of their own, so I think we will stick with low key. I asked Dante tonight what he wanted to do for his birthday and he said he wanted to have a picnic. Sounds like a plan to me.

One of Those Weeks

2007-04-25T22:24:00.000-04:00

Chris came down with a very nasty stomach flu on Saturday, which made for a bummer of a weekend for all of us. We did our best to keep the rest of the family healthy. I shared a bed with the resident bed-hog, Dante, for a couple of nights and so far, so good, except for my back hurting from being pushed into a corner. Chris is just starting to feel better and he leaves tomorrow for CT. Let's hope we stay healthy this weekend.

I have conferred with a couple of friends lately and discovered that the attitude of this lovely, soon-to-be 3 year old, is not as bizarre as it seems to us. Dante is doing his best to pick fights just because he can. We will be playing, having a good time and suddenly he starts a fight over nothing; And will not back down. It is so bizarre. We thought we were pretty good about interpreting what sets him off - no nap, Carina getting into his toys, close to bedtime - But now, I'm just wondering what the aliens did with my son. I sure hope this doesn't last the entire 3rd year.

Along that thread, Dante has stopped taking naps. He doesn't seem to be cranky ( I guess I should say crankier) without one. Not so with Chris, who is definitely cranky without his afternoon nap. I have been taking the kids for walks in the evening to settle them down either before or after dinner and that seems to help. I'm also taking advantage of the last few evenings with a breeze. They are pretty cute in the stroller. Carina is always sleepy and leans completely into Dante. The other night, he sat her up so he could put his arm around her.

The highlight of last weekend was a visit to Aunt Laurie's house. She made us lunch out by the pool, which was yummy. Then Dante, Carina and I went swimming....We put a kid's life jacket with the huge flotation pads on Dante, got him some noodles and he went for it and swam by himself! Carina tried out a floaty thing as well. She would splash and get all wet and then squeal with delight. I signed Dante up for swim lessons twice a week this summer, which I hope he enjoys as much as he did on Saturday.

Work has been stressful this past week. Not all bad, just busy. I had one of those days Tuesday where my "to-do" list was so long that I was crippled just staring at it not knowing what to do first. This happens at least once (or more) a year. Usually I can go with the flow and constantly re-prioritize my tasks, but right now I have too many high priority items to get through and not enough time. That's what happens when you have a job that technically doesn't exist, but still needs to be done by 2 or more people. But, of course, there isn't enough money for that. I'm already daydreaming about the summer and all the things we'll be able to do. Only 4 more weeks to get through.

Carina has been trying her hardest to stand up this week. She pulls herself up and then lets go and tries to see how long she can stand without support. The cutest thing is that she giggles and throws her arms in the air (and waves them like she just don't care) as if she's yelling "GOAL!!!!" I'll try to catch a photo of it this weekend. She also started dancing and playing instruments with Dante and me. We did a rousing rendition of "Old MacDonald" tonight that I'm sure scarred the cats for life.

what a "Load O' Crap"

2007-04-17T20:07:00.000-04:00

It was Saturday morning around our 'hood, and you could see the signs: "More crap than 2 people should have...", "This Way to Junk Nirvana!", "Chris and Jen's 4th Annual Load O' Crap Sale!", "Bric a Brac, Knick Knacks, Tchotchkes, Odds and Ends!" Lots of folks said they stopped by just for the signs. We did pretty well and sold quite a bit of stuff. Afterwards, however, we walked back inside the house, and it didn't seem any less cluttered! We just have too much stuff and not enough places to put it - isn't that everyone's story? Time for an addition!

We did sell off some toys and such, which made some people happy, and me a little sad. I know it's a chapter to close and I don't need to save every cute shirt that Dante ever wore, or the ball tower with the disco music, (okay, maybe keep the disco music), but it's still hard to see it go. Well, not really anymore now that we have that extra space in the front room......for more stuff!

Dante is trying to assert himself, and his opinion on things lately, much to our chagrin. However, sometimes, it's funny to trip him up on things he doesn't realize. Like "Dante, we are turning off the water in 2 minutes." "No! One Minute!" " uhh, OK." Or "Mommy, pick me up!" "Not until we get to the green car." "No, the blue car!" (The blue car is farther away than the green one.) "OK, that's a deal." It's pretty silly. Chris keeps trying to trip him up and get him to agree to what we originally said. It almost always works. Of course, as everything that we start to figure out with him, we know that it's short lived.

We were just discussing how Dante has always been a very analytical kid - observing, counting, trying to figure out how things work. We have noticed that even in his play patterns there is routine and order, not much venturing outside his comfort zone. When we go outside to play, he likes to go through the same activities almost like a checklist. It can get a little dull for us sometimes, but he always seems to be having fun. Hopefully, when he gets back into school he'll venture outside the box a little more often.

Carina on the other hand, is always outside the box. Then inside, then outside again. Then underneath....What a nut!
She is enjoying her new adventures twice a week with Ryan and Jen Palmer. She's meeting new friends in Jen's mom's group and stealing Ryan's pacifier and food with finesse. They are so cute together. The other morning they got into the double stroller and Ryan was alternately kissing and hugging her and then grabbing a toy out of her hand.

She is also knocking off a few Milestone Prereq's - stood up by herself this week a couple of times. She didn't bother to take any steps but she seemed pretty stable on just the two feet. Chris predicts she'll be walking by the end of May. God help us....
She also succesfully used a straw for the first time. It took a couple of tries but she got it. One thing we've learned; don't get in the way of the girl and her food!

Discovering Eggs and What's Inside

2007-04-10T21:51:00.000-04:00

We had our usual Easter Egg Hunt around the yard at mom's house on Sunday, which I look forward to every year. We actually managed to not lose any eggs this year! Carina and Dante looked super cute in their "nice clothes". Dante did a good job hunting for eggs. This year, he was also excited about what was inside...

Fast forward to Tuesday evening, no nap, been a handful all day, "Mommy, help Dante open eggs?" as he proceeds to try and eat all the chocolate that he sees in the basket. Even as we continually deny him the chocolate before dinner, he just keeps grabbing the eggs and trying to open all of them to find more! Note to self - hide the basket next time! Maybe he figured out what he needed to stay awake and not nap. Which he hasn't done for a few days now.

We have never really given Dante candy - we just don't have a lot of it around and never thought to give him any. Aunt Laurie was probably the first one to introduce him to "nem-anems" and the rest, well, is history. The kid LOVES them. So, we have occasionally indulge him in trail mix that has some m&m's, as well as raisins and peanuts ("see, it's not so bad for him, with the nuts and all...right?!"). But, to find eggs with some m&m's in them? Holy crap, I thought his head was going to explode!

Tonight, Dante read the Elmo potty book to me. He is so cute how he memorizes the books but certain phrases are fuzzy to him, so he just makes something up. We're not having much luck with the potty thing. He just doesn't want to sit there. He thinks he's missing out on something else. Even if we are in there with him alone. He had been doing OK and trying sometimes, but the more active Carina gets, the more Dante regresses to get attention. He has taken to making up nonsense sounds just to sound like her. It's very frustrating, because at the same time, he has started to talk in full sentences and has figured out his pronouns for I, me and you pretty well. I can't believe he is going to be three next month!

We need to get Dante into a speech and language evaluation, and then back for another hearing test soon (the Cisplatin chemo has the added side effect of significant hearing loss - Bonus!). I have noticed recently that when Dante is pronouncing certain things or reading and concentrating more that he seems to strain or have trouble with his mouth making the sounds. Hard to describe really, and only a parent would notice, so I'm wondering if it's just developmental, or related to the hearing loss.

Carina had her 9 month appointment last week. (She turns 9 months old tomorrow!) She's growing well, although much smaller than Dante was. She is around 25-50th percentiles in growth, whereas Dante was always 95th or more. She got her shots and the girl didn't even flinch! She was almost like, "Is that all you got?" Everything looks good. Dr. Patranella was telling me I could start feeding her more solids and I told her that we already were because Carina has been basically demanding to eat what we're eating. Today, she ate an entire waffle! She is crawling so fast lately, that she might not actually walk soon, like we thought, because she's figured out she can get there much faster by crawling. She is cruising around the coffee table and such, very proficiently now and nothing is out of reach. When we child-proofed the house for Dante, we didn't actually do much. He was one of those kids where you said, "No" and he left it alone. As long as you were playing with him, he didn't care to get into anything. Carina's not buyin' into that. "Are you kidding?! Look at all this stuff! I gotta get into that! and that! oooh, and that! hey, what'ya got in yer hand there?- lemme see it...."

Life is Full of Surprises

2007-04-04T22:40:00.000-04:00

Some of you might have figured it out from our not so subtle hints in the last post, that indeed, Chris and I got married last month. We had an intimate ceremony at Ft. DeSoto Beach with just a few of our close friends. Dante read one of his favorite books, "I Love You Through and Through"(Thanks Aunt Margie!), and almost stole the show. Our good friend Laurie officiated, as she has been offering to do so for years. She wrote a beautiful ceremony that was perfect for us. I even snuck a line into our vows that I promised to "not ask "what's for dinner?" at least one night a week." That should keep me free for the other 6, right? Of course, little did we know when we planned this that it would be the coldest day in March. Due to the super chilly winds, we didn't get a ton of photos of everyone, but it was still beautiful nonetheless.

Carina is all of a sudden changing in leaps and bounds. She's comfortably cruising around the furniture, eating spaghetti, giving kisses, and showing more interest in books. And she certainly doesn't go anywhere without her "happy birthday duck". Luckily, we have some backups, and even a pirate duck or two that work in a pinch. (Thanks Nicole!)

We all went to out for Mexican food one night this week, Dante having a taco and rice, while Carina lunged for my plate. I finally started putting some rice in front of her and she was eating it like a champ. We have a wonderful video of her making a smacking noise as she tries to get the rice off of her hands.

Dante is big into "making words" and learning to add and subtract. He loves to stand at his easel and put letters together and ask us if they're words or not. He knows how to spell some basic words and is sounding some others out. The adding and subtracting is a new thing that he's trying, although he's still not clear on the concept. We were driving home from the beach this weekend and suddenly, Chris and I realized that Dante was counting..."45, 46, 47..." next thing you know, the kid is up to one hundred! He continued until 111, and then got confused. Or bored. Not sure which. I think the cutest thing is that he's now trying to make sentences all the time, correcting himself and trying to figure out the correct pronoun to use for himself. I can't believe he will be 3 next month!

This next week will be packed with friends and family gatherings for Easter, and our annual neighborhood garage sale the following week. We hope to clear out the house at Chris and Jen's Annual Load O' Crap Sale!

Persistance Pays Off.... in more ways than one...

2007-03-30T22:19:00.000-04:00

We have always raved about the wonderfully proactive and thorough care we have received from Dr. Patranella and now we have yet another reason to rave: Ever since we had the PET scan back in December, she has been trying to get us reimbursed for it. (If you recall, Chris spent many hours on the phone trying to get it covered by insurance, only to sit on hold or get routed to incorrect people, or cut off after 20 minutes.) We got a call last week that Aetna had finally accepted the appeal and would respond within 30-60 days. Melissa, from Patranella's office was on the case. We all knew it should have been covered because this was the test that prevented either surgery, or more chemo, and in either case, saved Dante from unnecessary treatment and/or surgery, and saved Aetna at least another $30K.

Yesterday, Dr. Patranella left us a personal message on my cell phone that Aetna had decided to reverse its decision and cover the PET scan! That was $2000 out of pocket, so what good news! We can't thank them enough for following through.

Finally found out Dante's AFP today: 2.7!!! I asked Pam, "Did you say 10.7?" "Nope, 2.7." It's supposed to be below 7.9 and had been pretty close to that the whole time (or slightly above. You'll recall on Dec 26th it jumped up to 18 - scary). This is good news. His Osmotic Fragility Test (I just had to say that) came back negative. That was the test to see if he had a couple of different forms of mild anemia. I guess we'll just go the fact that he has a lower than normal hemoglobin level - hey, somebody's got to be at the bottom of the scale.... or that it just hasn't quite recovered yet?

We don't go back to the doctor for a month. I think I will keep a closer eye on him this month and see if he gets pale or weaker, and then call up the clinic for a CBC if he does. I noticed last month he had a couple of days where he seemed real low, and that was right when we did his CBC.

Dante and Carina had some sleep-over time at Nonni's house and Kim's house, while Chris and I escaped for a few days. Big thanks to Nonni, Uncle Mike, Kim, John, and Uncle Dave for making that a possibility. They both had a great time and sufficiently reminded everyone what it's like to have young children.

Both kids seemed to have really grown more hair this week. They're in a sort of race to see whose hair can grow long faster!

A Lucky Day

2007-03-22T23:00:00.000-04:00

You know when you say to yourself, "Self, I'm going to put this here, so that I don't forget it. So, don't forget it." .... and then you go ahead and promptly forget it? Well, this morning in our rush to leave the house in time for the CT scan, Chris set his sunglasses on my mom's van while putting Carina inside. I even saw him look up at them, thinking about not forgetting them, as if the thought-bubble where appearing over his head saying those auspicious words. We drove off in the opposite direction and a block away Chris realized that he had, in fact, forgotten the sunglasses ....So we turned around and tried to follow mom's path. After 2 blocks we realized, as we were sitting at 22nd Ave waiting for traffic to clear, that it was probably hopeless. So, we turned towards the hospital, drove another block and guess what was in the middle of the road? - Chris's sunglasses - untouched, sitting askance the yellow lines, at rush hour, the opposite direction that mom usually drives. I told Chris right then we should buy a Lotto ticket.

Dante did great this morning. We tried the CT without total sedation, but with a nice cocktail that made him mellow and quite stoned; it worked! Halfway through, he says real quiet, "WOW". He did great with his port, considering it's been so long since he had it accessed (5 weeks). We went over to the clinic afterwards to draw labs, and for a routine check up. Dr. Grana was there and said he looked great. He gained 2 pounds and grew 1 inch since February! His hemoglobin and platelets are still running low, so they drew more labs. Dr. Grana said he might have a mild form of anemia, because his initial pre-chemo CBC showed a low hemoglobin as well. But, we never noticed since we hadn't needed blood drawn before that. She also said his immune system should be almost back to normal and can now handle preschool, mall play areas, etc - with handwashing, of course.

As we left, we went to get a bagel for breakfast, which Dante loves to do, and before we were even a block from the hospital, he was passed out in the backseat. He was super tired from getting up early, having a slight cold, and of course, the drugs. When he woke up 3 hours later, Chris asked him what we did this morning. His answer was "Get bagels." :)

The clinic called around 3 and said the results were back...with nothing on the scan!!! We got the detailed report faxed over and it looks like everything is proceeding normally with no changes. I knew it was going to be a lucky day - should've bought that Lotto ticket.

Don't mean to leave everyone hanging...

2007-03-19T22:11:00.000-04:00

Busy Busy Busy around here lately...will report more on that later when I have a free moment.

Not too much news on the health front, except that Dante has a CT scan on Thursday - let's all hope it will be the last one for awhile!

Daddy returned from his trip and we were all very happy to welcome him back home, and back to help out with the routine. Boy, throw a change into a 2 year old's routine? By Thursday, I had to call mom and ask her to come rescue me so I could just step outside and scream! All is good now. And in perspective, it all seems silly. But, certainly not when you are sleep-deprived, spouse-deprived, hungry and dealing with an 8 month old who is teething and not wanting to leave your side and a headstrong 2 year old who won't nap!

Calgon, Take me Away!

Wear Sunscreen!

2007-03-08T23:46:00.000-05:00

Last fall, during one of our hospital stays, I had pulled my hair back in a ponytail and noticed that I had a spot that looked like I had scratched something on the edge of my scalp. I thought nothing of it, and then a month or so later, again at the hospital, I noticed it was still there. Well, once we sort of had our wits about us again (January), I went to the dermatologist and sure enough, it was a basal cell carcinoma (skin cancer).

I had it "removed" this week and being the second one I have had, I thought not much of it, even though it was a new procedure. Well, perhaps I should have asked more? I now have a section of hair shaved and a 3 inch row of stitches on my hairline. As the Doctor was stitching up my head, I realized I was getting a mini facelift on the one side of my face. Even though the spot wasn't that large, it was a couple of layers deep and in order to make it heal smoothly, they had to make a larger seam. I will have the stitches in for 10 days. Luckily my hair should fall over the shaved area and not be a big deal. I can't even describe how horrible a disposable razor with a surgical blade sounds on your head when it is already been numbed and you can't see what they are doing. The doctor was pretty funny too. He says, "Now don't stare in the mirror and freak out because your head is all swollen and you have these stitches and all. It will go away soon." And then he hands me a mirror.

So, I went to work right after the appointment and had a huge bandage on my head. These are the things that were asked: "did you fall? did a kid push you? car accident? what did you do?" My answer? I didn't wear sunscreen! Anyway, let's just say I have one serious headache. Too bad I can't take the painkillers they prescribed.

Dante has had another good week. He is very into his "yoga video" - yogakids ABCs. He tries to do some of the positions and sings a namaste song. Very cute. He has been super lovey this week, asking to hug and kiss us all the time. I think the sibling jealousy is kicking in big time. He's getting more and more upset when Carina grabs his toys. In the meantime, she's just trying to get closer to him, because she wants to be doing whatever he is doing.

On our way home from music class last weekend we went by some stables in South Tampa and said hi to the horses. We brought Carina to music class this time to see what she thought. She was taking it all in, but unfortunately, class is right at a time when she usually naps, so that might not work for her.

It is interesting, but I guess not earth-shattering, how different the two kids are. Dante just loves music and always has. Since he was born, if we would sing to him, he calmed down instantly. I remember being home alone with him for the first time, he was freaking out crying and I was running out of things to sing! I just kept singing the same things over and over. Those songs are still some of his favorites. Carina seems to have no interest. When we sing, it barely affects her at all. Sometimes, she will smile and stop and listen, but nowhere near in the same way that Dante did. But then again, he wouldn't even think of crawling somewhere without complaining about it first, and she is from room to room without even a thought. It will certainly be fun to find out what kind of personalities they grow into.

Double Trouble

Chris will be going out of town this week, so hopefully, things run smoothly. We have a decent bedtime routine going, but it mainly works because we're both here to make it happen. I think I will have to pull the "be a big helper" routine with Dante and have him sleep in our bed again. Twist my arm.

mean face - "we better NOT be out of cheerios..."

surprise face - "we have pistachio cookies?!"

the Ides of March

2007-03-01T21:20:00.000-05:00

Every year, I suddenly remember that although March is a beautiful time of year in Florida, it is miserable to a person with pollen allergies...Chris has those allergies. Which means that all windows stay closed - house and car, the cats are banished and he is trapped inside with tissue dispensers strategically placed throughout the house. Our yard looks like it is covered in golden brown snow - oak leaves and pollen.

This week, when Chris had the kids it was a bit tough trying to entertain them all day without going outside to walk, play ball or go on the playset. They went to the aquarium instead and had a good time. What a good investment that aquarium pass has been!

We start a new round of music class this Saturday and Carina will be joining us for this session. We shall see if she is as musically inclined as her big brother. I tend to think not, as she doesn't appreciate our singing nearly as much as Dante does. Dante tried to write w new song tonight to match one of his favorite books, My Big Boy Bed, but he didn't seem very happy with it, as it sounded just like the "pee pee" song. So, we set it to the tune of "Stray Cat Strut" - one of his favorites.

Today, I stopped by mom's house to pick up Carina, and Dante proceeded to ask for about everything in the house to eat, so mom casually says, "Are we still worried about his appetite?" I doubt that. He eats great and is definitely gaining weight. Although, his new fad is to steal Carina's cheerios.

Thanks for the sleep advice. We have had a decent week. Both kids have slept pretty well. Carina is learning to put herself to sleep at night and when she wakes up, it doesn't last long or else I bring her to bed with us and she passes back out. I thought I was feeling caught up on sleep and then the other night, I laid down to put Dante to bed and woke up the following morning! I never do that - I guess I needed it.

We scheduled our next CT scan for March 22nd, so no real health updates until then. Just staying in our holding pattern and hoping for a good month!

Sleepytime Quartet

2007-02-22T21:06:00.000-05:00

So, it's almost Friday again. We have had a pretty good week. Kids in great moods, going to bed at reasonable hours....but not staying asleep.

What do people do when they have kids at this age that have to share a room? I thought we were on the right track, but then Carina has started waking up at 1am every night crying. We try to just let her cry, because she doesn't cry very long, but then Dante wakes up crying! And he gets out of bed and comes into us crying - loudly! Which then really wakes her up... you can see our dilemma. The other morning, Carina woke up at 4:30, so I just brought her to our bed. Then, Dante woke up at 5:30 crying and it was 6:15 before I got them both back to sleep. We are still having to put Dante to sleep in our bed most nights, as Carina doesn't want to give it up when Dante is ready to fall asleep. I know this is just a phase and once Carina figures out how to stay asleep or go back to sleep easier, this will pass. But, in the meantime - any suggestions?

Carina has been very chatty the last couple of days, saying what sounds like "bubba" - which is perfect, that's what we call Dante around here. It would not surprise me if her first words are his name since she just thinks he's the cat's meow. That is, when she's not making the cats meow by pulling their hair!

Dante is very into letters and numbers, spelling and counting. The other day, he spelled Carina. Then I asked him to spell a couple of 3 letter words like "hat", "sun", "jet". He did it! He's now moving onto being able to read some words as well. The other night, he was counting stuff at dinner, as always, and he got to 29 and then said "20 10". I said, "30", so he starts "31, 32..." We did record a video of him singing his abcs with peanut butter in his mouth, that probably only a parent would enjoy.

Dante is looking so good lately. His hair is very slowly coming in and his eyelashes are growing back. When he was born, he had the biggest swirl of hair on the crown of his head; we always said it looked like a hurricane on a weather map. I can see it coming back, so I decided to track it's growth with photos. The best part is that he is starting to fill out again and just look healthy. Dante was always a big kid, so it's nice to see meat on his bones again. He took his last "minty medicine"(zantac) this week and he seems to be doing just fine. Eating like a toddler boy should. Not much progress on the potty this week, but it will happen - hopefully not in the bathtub anymore.

This weekend, Chris and I are getting out for our friend's birthday, music class on Saturday morning and hopefully, lots of playing outside! The weather has been beautiful here - blue skies, days in the 70s, with cool, clear nights...

Standing Pee and Other Triumphs

2007-02-16T22:36:00.000-05:00

Busy week around here. On Sunday, Dante, Carina and I went to the aquarium. It was a nice day out and I knew we needed to get out. It wasn't too crowded, so it worked out well. Carina was happy as can be sitting in the stroller watching all the people and Dante. Dante was super cute showing all the fish to his Diego action figure. "Diego, look at all the fishes! Wow, Diego, Look at that!" I wish I had had extra hands to catch it on camera. We went through the aquarium twice, since he always wants to go back, and he barely stopped to look at anything. Then as we were leaving, he was begging to go back through again.

We were very excited to have daddy home on Monday night. We went to the airport and Dante told me we would see 4 airplanes and sure enough, that's how many we saw! I should have asked him for lotto numbers. Later, when we were getting into the bath, Dante peed standing up at the potty! Go Dante! That was a first for us, as we had put potty training on hold after diagnosis. He has since done that one other time and even written his own tune, called the "pee pee song". It goes like this: sway back and forth (because he does that for all the songs he writes), start out loud and get softer as you go down the scale, and sing each word slowly - "pee, pee, pee, pee" then repeat. Destined to become as big of a hit as his other tune, "dibba dabba".

I don't think Dante was ready to give up sharing the bed with me, so Chris has been reading to him in our bed at night and then we move him to his bed afterwards. When he wakes up and realizes he isn't in bed with us, he gets a bit upset, but he gets back to sleep pretty easily. Speaking of sleep, Carina is almost sleeping through the night...although 6 am is way too early for me, it's better than waking up all night long. She really just wants to eat and go back to sleep, but sometimes, Dante wakes in the process and then there is no getting her to sleep. She still wakes up a couple of times, but she's getting herself back to sleep pretty quickly, for the most part. Strangely, I am more tired than before when I was getting no sleep. Although my short term memory is improved. I guess my body suddenly realized- "Hey! We haven't had sleep in a long time! I want more!"

Tuesday night was the Outstanding Educator's Awards and my good friend Louise was a finalist. A bunch of us from school got dressed up to go support her and had a good time. We were very bummed that she didn't win, as she seemed much more deserving in her category than the others, but I am sure they are all great teachers. The teacher who won was a teacher at Lakewood when I was there, and she was definitely a stand out in the bunch. In the program was a list of nominees and one of my former students was in there! She teaches middle school - pretty cool. And I guess that should make me feel old, but I just felt proud of her for being nominated.

Hey, let's go get a CaT Scan!

Wednesday morning, we woke up at 5 am and had to get Dante to start drinking contrast for his CT scan. Luckily, he had woken from a dream around the same time, so that went pretty smoothly. We went in and had the usual level of high quality service and attention that Dante seems to get everywhere he goes. Amy and company were practically fighting over who got to take his vitals. By the time we left, he was covered head to toe in stickers. Things went much smoother than last time and we all agree that perhaps next time, we won't have to sedate him. It takes longer to get him prepped and sedated than it does to do the scan. None of us like sedating him, but getting him to stay still on the table was a near impossibility at the beginning. Now he seems much more at ease with it all.

He was very excited to get to say hi to the fishies and see "cars and people". We went up to our old digs in 2SW and ran into Sara, our Child Life Therapist, which made Dante very happy. He did one of those deals where he is super quiet while Sara is there and the second we walk away, "Dante see Sara!"

Wednesday night, we went out for our Valentine's dinner. We went to a local pizza place that we had only ever had take-out from, but it's always packed. They gave us one of those clip-on-the-table seats for Carina, which she loved, because she was closer to all the action. They gave Dante some pizza dough to play with and kids eat free on Wed - so it all worked out! Dante got some spaghetti and meatballs, which he loves. The entire evening was crisis-free and we felt like the model Nuclear Unit.

We finally got the results of the CT scan this morning. It doesn't say "normal", but it comes pretty close. There is a spot in the lungs that they think is related to his sedation and not breathing deeply enough. There is evidence of a larger thymus, but this is normal post-chemo growth. (Apparently, it shrinks during chemo, so it then enlarges after.) The left inguinal area where he had his biopsy and is always the area in question, is unchanged. No growth, but no shrinkage either. Also, I forgot to mention that our latest AFP test was 6.6!!! We are going to have another CT in one month to track the thymus growth and the left inguinal area. We will also do another AFP at that time. No doctor's appointments for one month. one. month. free!!!

Dante is definitely feeling good. His cheeks are rosy, he is super happy, super lovey dovey with hugs and kisses, playing well with his sister and just being a good kid. He has been napping again lately, which certainly can't hurt the attitude! Carina has also been super happy lately. We have truly been blessed with wonderfully magical children. Now if only we could get some sleep....

All Good News Today

2007-02-09T22:34:00.000-05:00

I took the day off today, anticipating spending an entire day at the doctor's office getting a transfusion. I even packed ALL sorts of entertainment. Irene did his CBC while Dante inspected the Thomas the Train stickers and stuck them all over his body. His hemoglobin went up to 9.2 - so no transfusion! Yea! His ANC is 3700; his platelets are still low but up a few points from Tuesday. All of the tests they did the other day to determine the cause of the anemia came back negative. They are still waiting on one test, but I got results for about 10 different things and all were good. Whew.

We have a CT scan on Wednesday morning at 6:30 am!!! fun fun fun. Once we get the results from that, we will determine the plan from there.

Having already requested a sub for my class today, I took full advantage and took the kids to a new park in south St. Pete, Dell Holmes Park. There were a handful of familiar faces from Sweet PEAS there, and Heather met us with Tyler and Gretchen. What a great park on the shores of Lake Maggiore, designed for 2 years and up, everything was low to the ground and safe for preschool age. There was artificial turf, so we set the girls down to crawl around while we chased the boys. It was actually quite hot today in the sun, so Dante got a bit flushed and I wished I had worn shorts! (Silly to think that after hearing the weather reports for those of you up north. Chris said it was 15 in CT.)(it was. it's 12 right now! -cg)

We had another night of Carina crying in her crib at bedtime. It's been tough, because the last two nights she has not been tired, but I had to put her in there so I could get Dante to bed. She pretty much slept through the night last night, so wish me luck for another night of "sleep". I say "sleep" because Dante is in bed with me and he tosses, a lot. But he also snuggles too.

Doctor Day

2007-02-06T21:48:00.000-05:00

We somehow fit in 4 doctor's appointments today. One for Carina for her flu booster shot. One for me - just a cleaning at the dentist. The other 2 were for Dante.

Dr. Patranella was very happy to see that Dante had gained 2 pounds since we saw her last month! He has not been sick since we started on the Zantac, which helped his appetite tremendously. We are now going to drop to once a day, for another 2 weeks and then stop all together and see how he does. Other than that, she said he looked good to go until his 3 year check up.

Next, we were off to the oncologist's. We didn't really see a doctor there today, just the physician's assistant. His ANC is still 2600, which is good. However, his hemoglobin is 8.2 - low (they transfuse below 8.) His platelets are still low - not super low, but still below normal. They took a lot of blood to run a variety of tests to see why he's anemic, and we'll be getting results trickling in over the course of next week. I'll have to take him in on Friday to see if he needs a transfusion or not. Hopefully not. I had said to Chris the other day, that I thought Dante seemed to be not feeling so well, looking pale and getting tired easily. Chris attributed a lot of that to his nap, or lack thereof, and the weather. But, the blood levels made sense. I sure hope they can determine what's going on. The list of possibilities as to the cause was interesting and stressful, and then the PA said, "...but none of these would be related to his therapy." Are you kidding me?! How can his blood be having trouble getting back to normal, and it have NOTHING to do with poisoning his body with chemo 5 days a week , every 3 weeks, for 16 weeks ? really.

Dante ended up napping afterwards, as the two appointments really wiped him out, which was good for him. He even went to bed on time, so he must have been tired.

Speaking of sleeping, we thought for sure we were doing good with Carina. She's been going down to sleep at the same time as Dante, waking a little bit here and there, and then sleeping most of the night. Last week she even slept through the night for 2 nights in a row. I didn't know what to do with myself! Then the weekend came...Carina has been up every night, all night, since Friday. Waking up every hour or two and not going to sleep unless I fed her. Last night, we finally brought Dante into our bed because she was screaming so much, and she cried all night long. I'm so sleep deprived right now, I can't remember what I'm doing half the time.

So, we will be having Dante sleep with us for the next few nights while Carina cries it out, or else I won't be able to function. Dr. Patranella swears that in her 20 years she has only met one baby that took more than 3 nights to figure it out. I remember her telling us that with Dante, and it was pure agony to hear (his crying, not her advice) - but it only lasted one and a half nights. Really. He has been a good sleeper ever since. It's just really hard with the two kids sharing a room, to avoid having them both crying when one of them wakes up!

Chris will be heading up to CT to visit with Gomma this weekend. We have music class, but other than that, no big plans, except trying to get some sleep!

Some photos from Chris and Dante's recent expedition to the aquarium:

Baby alligators!

What's that one?

Wall of water

Boy in fishscape

Uhh, there's a turtle on your head...

Beachy Day

2007-02-03T22:06:00.000-05:00

Dante, Carina, Nonni and I ventured down to Casey Key to visit with Uncle Dick and Aunt Karen today. They were down from NC to visit Granny Mil and her niece, Laurie. Karen was laughing as I proceeded to unload all sorts of stuff from the car for just a day trip. I told her that this wasn't my first BBQ and that Dante would be happy! I didn't do too bad, as the only thing we didn't actually use was the extra sets of clothes.

I got out the pack n' play for Carina and I think Dante spent more time in it than she did! Perhaps the novelty. I couldn't get him to stay in that thing when I really needed him to! He did hang out in there and play for almost 45 minutes while Carina slept and I rested. It was a terrible day for the beach - cloudy, rainy and about 65 - but we made the best of it. Chased birds, got our feet wet, found shells, watched wakeboarders and generally ran around. Dante was smiling most of the day and just kept running back and forth out to the beach and back. Carina just had a good time as long as she could see Dante.

On our way home we stopped to say hi to Millie and had a nice visit with everyone. Millie's niece Laurie was prepared with presents for the kids that kept them, at least most of the time, away from all the breakables in Millie's house. Carina decided to scream almost the entire way home, but Dante was sound asleep before I made it to the interstate. I was wishing I was sitting in the back seat in a cushie seat instead of driving!

Dante and Daddy went to the aquarium this week. Chris said that Dante raced through the whole place and as soon as they got out to the car, he says "Dante see fishes under water and turtle..." as if he is describing what they just did. So Chris says, " Yep, that's what we just did and saw...", "No, Dante go back in!"

One Way or the Other

2007-01-28T22:49:00.000-05:00

When you venture out with a six month old and a two and a half year old, you always run the risk that the day could go one way or the other. This weekend, Sunday went one way and Saturday definitely went the other.

On Saturday we went to Wes & Gina's Gasparilla party along with Uncle Dave. Dante was unusually tired from the start. Add in lots of strangers, a loud band, and a moonwalk full of big kids, and you have what turned out to be a recipe for disaster. He started out okay, but soon got disinterested in most of the activities (sensory overload, perhaps), and then he started with the "no's". He threw a number of tantrums until he finally discovered the backyard. He was completely enamored of all the little porcelain animals and stuff to look at, that he just kept going back and forth pointing them all out; counting them up and telling stories to himself about all of them. It was pretty cool. So, it ended up OK and he totally passed out on the way home.

Another really cool thing that happened at the party was a raffle that Wes & Gina put together for Dante. They managed to wrangle up some really great prizes, including a weekend at their cabin in TN. Lots of people bought tickets and many went home with a little something extra. And Dante got a nice little addition to "the Fund". So, a heartfelt thanks to Wes & Gina. They give "friends" a good name.

Sunday was going to be just errands, and we thought for sure that Dante would melt down at least once, with all the in and out of the car seat, and no touching stuff in the stores, but he was actually quite good. He got all excited about the fish and birds at PetSmart. He hung out with me at Joann's while I waited for what seemed like an eternity for the frame people. Why does that always take so long?! And once we got him an oatmeal raisin cookie, the rest of the grocery run was smooth sailing.

In other news, Carina moved up to her big girl car seat, so she is now sitting comfortably, and very pleased with the new ride. Of course, we have no back seat now, but that's not a big deal.

Dante's appetite seems to be picking up. Still being 2 and not telling us what he really wants to eat, but no biggie. I think he's gaining some weight back as his cute little belly is sticking out again. The Zantac must be doing the trick on his tummy. He's been super cute taking his medicines - he asks for "minty medicine" (zantac) at bedtime and then wants us to "smell minty" - wherein he blows on us so we can enjoy his minty fresh breath. Working on his moves for the ladies, no doubt.

He also gets a little upset when he thinks he's supposed to have "purple medicine"(antibiotic for chemo patients) and it's not one of the days he's supposed to take it (weekends).

I asked my mom what he ate today: 2 waffles, about half a box of cheerios, a hot dog, turkey, applesauce, and I lost track after that. He was chowing on some broccoli tonight - which he just loves.

Looking forward to our chilly week - finally get to wear the winter clothes and Carina gets to wear her baby legs!

Healthy and Sick

2007-01-25T21:05:00.000-05:00

Dr. Grana left a message today that Dante's AFP is at 8.3, which is right at normal levels (apparently they've adjusted the range of acceptable values due to our last incident.) We have an appointment in 2 weeks to take another test. At that time, we are hoping to find out how his immune system is doing and perhaps look more ahead to the future. It's an odd adjustment back to the life without 2 doctor's visits per week.

I remember, at the beginning of this experience, reading in the different books about dealing with cancer, that one of the hard parts about treatment is the post-treatment period. It said that now that your lives had become so focused on getting through the chemo and everything, that once it stops, you feel a loss for that routine. It said that many caregivers worry more during this period, since you feel like you aren't actively doing anything but waiting to hear the next test result say that everything is still OK. I can relate to that. I miss seeing the people at the clinic or the hospital on a regular basis, as we have met some wonderful people. However, I do not miss all the rest of it! I guess the hard part now is waiting to finally hear someone say that he's OK.

In looking forward to that, Dante and I made a surprise appearance at North East Park Preschool this week. We stopped by to drop off the registration form for summer and fall. We got to see Miss Jane, who gave Dante 2 "mini-cupcakes" (muffins) that he was happy to hold. A few teachers popped their heads out to say hi and were pleased to see Dante. Miss Debbie came out with Isaiah. The four of us sat down in the lobby and talked. Dante was being very shy, but I could tell he was excited to see them. Miss Debbie was also very excited to see Dante. Miss Debbie said that Isaiah always asks where Dante is and that the class prays for him when they go to chapel. Isaish was one of his classmates that Dante always talked about after class. We saw Dante's pictures hanging up on her door, and they keep an update from the blog posted for parents to keep up with Dante as well. We are hoping to hear that Dante's immune system continues to improve so that he and Chris can go for short visits on a regular basis. Dr. Grana said it usually takes about 4 months to get the immune system back to normal, so we are looking to start back in May.

Carina has been sick since Friday night. She ran a 101 fever all weekend and was not happy, naturally. We saw Dr. Patranella on Monday and she said it was a sore throat virus. She went ahead and did a strep test on Dante's account, which was negative. She said it should take the week for her to feel better, but otherwise, just to wait it out. Tuesday, she developed a rash. Wednesday and today? Sleepy and cranky - which is not like her. No fever since Monday, but she is still just not herself. And she is not sleeping well at night either. Dr. Patranella called this morning and left a message, saying she saw I had called the nurse the day before. (Talk about service and care!!!) She said that a rash is pretty normal for a virus and hopefully she should be feeling better by Friday. I sure hope so. Luckily, Dante has stayed feeling good. If Dante had the same symptoms, he would have been in the hospital! If we have another rough night, I might take her in just to make sure before the weekend that it isn't something else.

We are looking forward to music class, and Wes and Gina's Gasparilla Party on Saturday. I am looking forward to a decent night's sleep. Oh, and our tree finally came down last weekend! It's nice to have our space back.

Dancing at Ali's house

2007-01-20T21:50:00.000-05:00

At music class today, Dante was running the show. He was up in front dancing from the time we got there. He was helping to pass out and collect all the instruments. He was dancing all over the room. Sometimes we go and I can tell he is unsure of himself, because he is hanging all over me - well not today! It was really fun to watch. The best part is that all day long he would say what sounded like "owie" - but he was really saying "Ali" (Miss Ali is the wonderful music teacher). And tonight before we went to bed, he suddenly recalled every detail of the class to me and all the songs and dances. And then he ended it with "we went dancing at Ali's house."

We went over to Tampa tonight to see the fireworks after the Children's Gasparilla parade. No use in seeing the parade - too crowded. But, the fireworks display is about 25 minutes long and Dante had a blast. We timed it perfectly so that everyone was leaving and we got a great spot on Bayshore, with no one around and a clear view of the fireworks. It is beautiful weather out right now, so that made it even better.

Carina woke up sick this morning with a fever, but no other symptoms. She has done nothing but cling and sleep. And squint at the fireworks. I sure hope she's better tomorrow.

When we were getting Dante to bed, he was so overtired that he got the giggles for no reason. I swear, Dante's laugh is the best sound in the world. He's always had the best full-belly laugh; and all the dimples show up and you just can't help but giggle with him. I've really missed that. Sure, we've laughed along the way plenty. But the laugh I heard tonight was from a boy that felt good. And then he went peacefully to sleep.

Oh, and it's Saturday night and our Christmas tree is still up. But, the night is young!

Are we normal yet?

2007-01-18T22:00:00.000-05:00

We survived our weekend without Daddy. Way more arguments with Dante than I would like, but luckily they don't last too long. Dante has started picking fights with me on purpose whenever I am doing something with Carina like washing her instead of him in the tub or feeding her or changing her diaper. All times when I can't take my eyes off of her for too long. I know this is typical sibling stuff, but it doesn't make it any easier! We were all happy to have Daddy home and the kids have been sleeping better since his return.

Dante gave me a small scare over the weekend. He woke up on Sunday and looked terribly pale and was really whiny and upset all day. I could just tell he didn't feel good. Luckily, after he took a nap, he started to look better. And the next day his mood was improved. We found out today that his hemoglobin is low, which could account for the paleness. Perhaps it had dipped that day.

So Dante's ANC is 2600, which is a normal level. His platelets are pretty good, but he is still bruising quite a bit. The only thing low was the hemoglobin. They took blood for another AFP test, and if this one comes back normal, we don't return to the doctor for 3 weeks!!! Breathe another sigh of relief.

This weekend is going to be one of playing super catch up and clean up! We still have to take down the holiday decorations (!), since Chris left at the last minute last week. We're also trying to reorganize the kids' things because it feels like our house is just one big pile of clutter! I'm sure it will feel better once the tree is down and we actually put away that last load of laundry. We are certainly going to have to child proof the house soon. We never really did with Dante, as he just didn't get into stuff. Carina? She is going to get into stuff. She tries to grab anything that Dante has and this morning, without a sound crawled over the pillows blocking her on the bed and rolled onto the floor. Luckily, I had pillows on the floor just in case.

For those of you keeping track, Carina is now going to sleep around the same time as Dante every night. She is not quite sleeping through the night, but is doing much better than the every 2 hours she was doing until last week. The first day I got 4 hours of sleep, I was actually all discombobulated!

Life is slowly returning to normal - whatever that means for a family with a 2 1/2 year old and a 6 month old. Oh, and maybe this weekend, Chris will complete his holiday cards and I will make my presents!

2 out of 3 ain't bad?

2007-01-13T22:55:00.000-05:00

It's a bit of a comedy around here at bedtime and naptime. Carina wanting to nurse, Dante yelling at me to read books, me telling him to be quiet(=Dante gets louder.) I can feel my blood pressure rising and then I just have to laugh at the silliness of it all. We have been doing OK, 2 nights without a struggle, and then tonight's frustration, but both are quiet now.

We are missing daddy this weekend. I asked Dante what he wanted to do tomorrow and he said, "Daddy see Uncle Tommy and Gomma, and Dante and Mommy and Carina hang out." So, that is the plan for Sunday!

Today, we went back to music class with Miss Ally at Baby Bungalow. Chris and I were a bit nervous about there being a big class. Everyone seemed to understand when Miss Ally said that if their kid is sick, they shouldn't to come to class. I'm pretty sure most of them had no idea why Dante's immune system is compromised, but they were all very receptive. Miss Ally had a great idea for sanitizing toys - 1 part listermint mouthwash and 2 parts water in a spray bottle. Smells good and non-toxic. Anyways, Dante had a great time. I could tell he was way over stimulated from being around so many kids, but he did well. He was up dancing around and was the first in line to play the autoharp at the end of class.

We are now into 5 days with no yuckies, so life is good. Dante has lots of energy and seems to be feeling good. Let's keep it that way.

Back to "normal"

2007-01-10T22:56:00.000-05:00

Dr. Grana called first thing Monday morning to let us know that Dante's AFP came back at 7.8 - normal is less than 7.9. Chris and I have decided to wait and watch the AFP for a while. If it fluctuates again, we will proceed with surgery to find out what is going on. If it stays normal, well, I think that's obvious.

In the meantime, Dante has had 2 days with no "yuckies", so perhaps the Zantac is kicking in. Hopefully, that means he will begin to feel better all around soon.

Chris is leaving for Connecticut for a long weekend so I am looking forward to having my hands full!

Thanks again for all the whirling dervishes out there and melted ice cream on Dante's behalf. It appears to be working so far!

Another inconclusive result...okay, marginally more conclusive, but still shy of definitive, with a touch of unknowable, and a dash of Hmmmm....

2007-01-07T15:44:00.000-05:00

The CT scan scheduled for 7 am, with a stat read by the radiologist turned into a CT at 10 and so many emergencies that the radiologist couldn't get to it until the afternoon. Dr. Grana ended up looking at the scans herself after we were still sitting in the clinic waiting at 12:30 (= really long morning for a 2 year old woken up at 5 am to start the whole process.)
So, here's Dr. Grana's synopsis: the jump in the AFP was not consistent with tumor growth; it would be a much higher number if it were recurring. The last AFP came back at 11.2, so it came down from the week before. From there, a lot of possibilities: calibration error(?!), Dante's natural AFP could be higher than the range, and/or possibly still a small amount of tumor left. The CT results showed that there's one small spot in the lungs, but that is most likely scarring, or Dante not taking a deep enough breath before going under. The only other spot still showing is in the groin area where they did the initial biopsy. The problem is that the CT can't reveal whether it's scar tissue or tumor. So much for the advent of technology...

Dr. Kerr contacted 2 specialists in Germ Cell tumors and one advised to just watch the AFP, the other advised that we do surgery to make sure that the spot in the groin is not cancerous. Dr. Grana thinks that it's a good idea to go with the surgery to eliminate any doubts. The surgery would be very similar to the one he had before, but a bigger incision to get around the one that he already has. They would take sections from all the lymph nodes in that area just to make sure. In the meantime, they took another AFP to see where that's heading.

We are contemplating the options and will discuss more with Dr. Grana when the next AFP comes back. We are breathing a big sigh of relief anyway, because all signs indicate that even if he still has any cancerous cells, it's very limited.

We took both kids in for checkups at the pediatrician this week. Carina's 6 month appointment went smoothly, even with 5 shots. Of course, this was before she got the blackeye from trying to stand up, yes, stand up, on a new toy she got. Dr. Patranella laid it on the line and told me just to let her cry at night so that Chris and I could get some sanity back in our lives. We have had to a couple of times, but she is just ready to party around 9 pm! Hopefully, I will see a good night's sleep soon.

Dante was always at very high percentiles in weight as an infant - 99th for a while and then down to 75th. He is now at the 25th percentile, which was a big cause for concern for Dr. P. He has technically only lost 3 pounds, but he hasn't gained any weight since his first birthday. She told us to start putting butter and cream on everything and to try some supplement drinks. The problem is that he won't touch those things, so we will be trying to add as many calories as possible. He is still vomiting on a daily basis and sometimes more than once. In describing when this happens, Dr. P thinks it's an acid/gastritis issue, so he's on Zantac now. Hopefully, once that kicks in he will start to feel better. In the meantime, most mornings still start with grabbing the "yucky bucket". I told her that we were having issues with behavior and we aren't sure if the cause was Dante being 2, having a new sibling, constant doctor visits or what. She said that it was probably all of those, but mostly that his stomach hurts. Imagine how you feel when your stomach hurts for a long time, are you in a good mood?

He was actually in a pretty good mood this weekend, until bedtime of course! but that's another story...

This time with feeling!

2007-01-04T23:06:00.000-05:00

Tomorrow (friday 5 january) Dante will have another CT scan. This is a big one given the recent developments with the increased AFP. Much of what is revealed (or not) will determine the course of the next couple of months and the outlook for his prognosis. We are hoping to see nothing. No growth, no scarring, and no new tumors.

Nada. Zip. Niente.

Your assistance in this regard is requested. Please feel free to send all your positive thoughts, prayers, energies, and vibes in his direction. Recite your mantras. Rub your crystals. Whirl your dervishes (?!). Whatever it is you do, we'll take it!

And, as always, please include a vision of, as our good friend Chris Schiller put it a few weeks back, "The Chornobyl equivalent at the Ben & Jerry's factory".

Thank you for your continuing love and support.

New Year's black cloud and silver linings

2007-01-01T23:55:00.000-05:00

Chris and I feel like we have been walking around with a black cloud hovering over us all week. How can you not be full of dread after getting the AFP news and then having to wait so long for an answer? And to have a normally happy holiday to celebrate in the meantime? It was especially tough as people said "Happy New Year!" We have much to be thankful for, but this feels almost as terrifying as it did after our first visit to the hospital and Dante's diagnosis.

Last night we went to the shuffleboard courts and watched the fireworks over Mirror Lake. Dante had a great time, acting out all the explosions in the sky - sound effects and all; and both kids stayed up until 1am!

We paid for it today though, waking up too early, no nap, and visitors. Carina apparently thought that tonight was also a special occasion and didn't go to sleep until midnight. This girl definitely has her daddy's night owl tendencies.

Despite all the stress, there were some positives from this week:

Dante looks much better and his appetite is back. He is still getting "yuckies in his mouth", but it's mainly because he tries to eat too much and his system can't quite handle it yet.
Chris's dad, Tom, is in town for a few days to visit and Dante is having a great time showing Grandpa all of his toys, and playset.

Today, we had an impromptu New Year's Day gathering at the house, with what I called the Bizarro Smorgasbord. We had all sorts of food that didn't quite go together. My mom made Hoppin' John, so that we could eat black eyed peas for good luck. There was chili (bean and no-bean?!), hummus, squash casserole, and a couple of vodka tonics. (if you see a big green cloud over Euclid/St. Paul's, that would be us.) Aunt Laurie & Robb, and Uncle Dave came by as well. Dante loves to entertain and have other playmates around. We were very happy to see Robb out and about.
I took Carina to the doctor on Friday, thinking maybe she had the starting of an ear infection or something. The doctor took one look and asked if she was really 5 1/2 months old, because she was sitting up on the table, proficiently playing with a toy, and she's starting to crawl. The doctor said we better child proof now, because she could be walking by 9 months! Anyway, her ears look "beautiful" and we deduced that she must have a seasonal allergy. The doctor's words were "Sick of the Christmas tree yet? Take it down and I bet she'll feel better."
Dante and I made "sprinkle cookies" today. I'm pretty sure that a couple of the cookies had more sprinkle than cookie, but Dante had a fun time shakin'

This week includes getting results from another AFP test, Carina's 6 month check up, Dante's CT scan, and hopefully, some playtime mixed in-between. I still hope to complete my homemade gifts for the year, and maybe Chris will finish up the X-mas cards too - one can dream!

Thrown For a Loop

2006-12-28T17:09:00.000-05:00

We received distressing news at the doctor's visit yesterday; we were told that Dante's alpha feto-protein(AFP) count has increased to 18.8. It had previously dropped to 6.9 (normal is 7.9 or below). We are scheduled to have a CT scan next Friday and they will be reading the scan immediately to help us determine the next course of action. Unfortunately, it will almost certainly involve more chemo and/or exploratory surgery. They took another AFP in the interim, but we won't get that back until next week. We can't even begin to speculate what is happening and why the AFP has jumped so high. There are a couple of possible scenarios, but at this point only ones that involve the words "fluke", "anomaly", and "someone else's by mistake" are one's we want to entertain.

We knew that with this type of cancer, if it were to recur, it would most likely do so within the first 6-9 months. We didn't expect it to recur in 6-9 days. It's too early to say what's going on, but one wonders if this is more of the same, the same thing coming back, or something else entirely. It's that last one that scares us the most.

As you might imagine, this has put a damper on our holiday celebration. At the very least it's put the cautious back in optimism.

Please keep Dante in your thoughts.

A holiday of over-stimulation

2006-12-26T22:46:00.000-05:00

Today was a really nice day. Before today, Chris and I were barely keeping ourselves sane with balancing family, preparations, child care, and shopping. We are exhausted from all of that and looking forward to relaxing these next 2 weeks and enjoying our family. Back to today; I had nothing planned and just sat around and played with Dante and Carina all day. We didn't even change out of our PJs! It's rare that we ever have days with no doctor's appointments, or errands to run, or work to go to. I think I need to do that more often.

Dante had a wonderful Christmas -as much as you can when you're totally over-stimulated. He got a lot of fun gifts and just what I requested - no electronics - just good old-fashioned fun like legos, toy cars and planes and a cool bug game. He did get an Elmo TMX from Kim, but it made him cry, so that promptly went back in the box for a later date! Carina had fun just trying to reach the paper to chew on. Oh, and she started lunging this weekend - not quite a crawl yet, but with the butt in the air and plenty of movement. We are definitely going to have our hands full with her! We took our time and opened presents and played and then went over to Nonni's house for a delicious dinner. Being as over-stimulated from presents and all the people, neither Dante or Carina have had much sleep - which in turn means we have had even less. We're both reaching that sleep-deprived state where you are functioning but can't remember what you are in the middle of doing half the time!

Dante seems to be feeling a little better today. His color is good, so I don't think he will need more blood this week. He is still bruising bad, so he might need more platelets tomorrow. He doesn't have much of an appetite and has been losing weight. I think he might have some mouth sores, a common side effect, which is making eating no fun! If he sticks to the same recovery schedule as he has after previous rounds, he should be back to "normal" by the weekend. We will be having our follow-up CT scan next week sometime to make sure that things are clear. They did another AFP test and we should be getting the results back this week.

I put normal in quotes, as I don't think we will be back to normal for quite some time. Life is way stressful around here and Dante's behavioral changes are difficult to determine if they are related to having a new sibling or they are from him feeling like crap. I am hoping for the latter because that should be going away soon.

Early gifts

2006-12-22T15:03:00.000-05:00

We spent the last 2 days at the doctor's office getting platelet and blood transfusions before the holiday. Dante's platelet count was at 7...I think he was bruising if you looked at him funny. Hopefully, now that he got the blood, he will have more energy and be on the upswing for the holidays. His ANC is 1300 today. Still low, but not as "boy in the bubble" time as he was. The doctors wanted us to get his follow-up CT scan next week, but we said we wanted to wait another week so we could enjoy our holidays a little more!

Uncle Tommy, Keiko and Gomma arrived in town this week and we are looking forward to relaxing and enjoying family over the break.

I went to work a couple of weeks ago and as soon as I sat down the phone rang and said it was Q105, will you hold? Oh no....I'm about to be on the radio...So, I hear Mason Dixon read a letter from my friend Nora, at work. It told him about what we have been going through the past months and I was already speechless. Mason then proceeded to tell us that his charity, The Christmas Wish Fund, was going to try and make our holidays less stressful by sending us a check for $1000! I was speechless and in tears. What a nice early gift and he was right! It has already helped to lessen the holiday money stress! We have truly been blessed with wonderful friends. But, more on that later...

I'm off to try and get a couple of last minute things. I still haven't finished my homemade gifts of the year or baking. I think we will enjoy New Year's cookies instead!