Fries are done

Tuesday, June 26, 2007

Officially Official

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...

Thursday, June 14, 2007

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

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!

Tuesday, June 12, 2007

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

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...

Tuesday, June 05, 2007

No More Purple Medicine!

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!

Friday, June 01, 2007

Back From An Escape To Nowhere...

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....