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.


  • "I am so thankful for dante" he hold a special piece of my heart! He was a blast for the summer in my class! I will be praying for him ! We love you guys!

    miss laura

    By Anonymous Anonymous, at 8:46 PM  

  • Wonderful, wonderful news Jen!

    By Blogger Kip, at 1:27 PM  

  • Hey Guys,

    My dad said he saw Chris and Dante at Home Depot and gushed about what a beautiful child he is (that would be Dante he was talking about--I think!!). What wonderful news. Keep on posting...


    By Anonymous Anonymous, at 6:59 PM  

  • Glad to hear things are going great! You guys are always in my thoughts and prayers. Missing you much!

    By Anonymous Todd, at 6:45 AM  

  • I am a friend of Kips and have followed Dante through his good and bad days. My son lost his hearing at age 3 from menengitis..hearing aids were supplied by the Sertoma Club.Alsi check with your local Deaf service age 4 my son received a cochlear implant..he is 20 and attends Florida College and is on the baseball team..Dante will be fine!!!

    By Blogger melanie, at 10:35 PM  

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