Fries are done

Wednesday, September 26, 2007

"I'm all better now."

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

"No new masses are identified. 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.

Sunday, September 23, 2007

Hello?, Anybody home?....

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.