"What I tell you three times is true"
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...
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...