Work-Up Week Days 3 & 4
It's Thursday night, and we've been through another couple of interesting days. Yesterday, since all of our tests were cancelled we only had a consultation with our nurse coordinator, Teresa, and she took us through the expected "protocol" for Max. This is where we were shown an actual calendar for the first 40 days or so. We learned about Max's chemo regimen and about some of the major drugs he will be on during the first month and beyond. The amount of chemicals that will be flowing through his little body is staggering. It's mind boggling to think about what it's taken to get to this point, where there is at least a somewhat standard practice for moving forward. We've come to peace with our decision to be at Minnesota. We have been impressed with the thoughtfulness and thoroughness of everyone we've met. We are scared about the future, but we know that we couldn't be at a better place.
A piece of information we found interesting was that the new stem cells will be taking over Max's blood and changing his blood type and DNA. His DNA throughout the rest of his body will remain unchanged. So, in the future, Max's hair and blood will have different DNA. Look for a future episode of "Law and Order" to explore this phenomenon.
As for Thursday, well, today was a little bit rougher. We began the day with a meeting to learn about his "central line" placement. This specifically is called a Hickman catheter and it is what will be in Max for the next year at least. It is a tubing that connects from his jugular inside his neck, goes under his skin, and comes out his chest. This tube will allow him to have meds put in and blood drawn out. We will have to keep this area super-clean to minimize the risk for infection.
Then we went to audiology and Max paid attention again to the loud noises and ignored the low static sounds. This was consistent with his tests that he's had so far back home. Not the best news, but no worse than usual.
Then we waited THREE HOURS for a dentist to come and look at Max's teeth. He did one little scrape and told us they were fine and though they were coming in a little black, it was just staining from multivitamin.
Finally, and after Max had been fasting for over 4 hours, we began our worst emotional torture so far -- an upper GI study. This was what the Gastrointestinal doc ordered for Max so he could see if his esophagus and windpipe where "communicating" To do this, Max had to drink a barium mixture and be looked at with a fluoroscope. They told us they would have to strap him down to a board and they would take a few pictures of his chest and guts over some time intervals. What they didn't tell us was that if Max wouldn't drink barium (and who would for God's sake?) they would have to stick a tube up his nose and down into his stomach. They also didn't mention that the "board" was actually some sort of NASA training device that allowed them to tie down Max with his arms tucked BEHIND his head and then to spin him over on his side as the liquid sloshed around his belly. The good news is that they didn't find anything wrong anatomically to explain his wheezing or reflux. So it's good news because Max won't need any new procedure for anything gastrointestinal prior to transplant.
Whew! This is a long email. In other news, they had a BINGO night here and all the kids came down. The prize cart was a sight to be seen. I am sure all of the prizes were donated, so consider dropping off some toys at a local Ronald McDonald House near you. Luckily for all involved, Grace had a lucky card in the first game, and got a new Barbie. Her friendship with Kendall continues to bloom. She has a form of leukemia called ALL and she'll be admitted for transplant at around the same time as Max. So they'll be transplant buddies and Grace will have two people to visit.
I gotta go check on Margaret and the kids and we have to watch a transplant video tonight and go over our consent forms. We have to sign over the rights to our son's life basically, and from what we've heard, it's a little daunting to see it all written out.
Good night from Minnesota,
mike
A piece of information we found interesting was that the new stem cells will be taking over Max's blood and changing his blood type and DNA. His DNA throughout the rest of his body will remain unchanged. So, in the future, Max's hair and blood will have different DNA. Look for a future episode of "Law and Order" to explore this phenomenon.
As for Thursday, well, today was a little bit rougher. We began the day with a meeting to learn about his "central line" placement. This specifically is called a Hickman catheter and it is what will be in Max for the next year at least. It is a tubing that connects from his jugular inside his neck, goes under his skin, and comes out his chest. This tube will allow him to have meds put in and blood drawn out. We will have to keep this area super-clean to minimize the risk for infection.
Then we went to audiology and Max paid attention again to the loud noises and ignored the low static sounds. This was consistent with his tests that he's had so far back home. Not the best news, but no worse than usual.
Then we waited THREE HOURS for a dentist to come and look at Max's teeth. He did one little scrape and told us they were fine and though they were coming in a little black, it was just staining from multivitamin.
Finally, and after Max had been fasting for over 4 hours, we began our worst emotional torture so far -- an upper GI study. This was what the Gastrointestinal doc ordered for Max so he could see if his esophagus and windpipe where "communicating" To do this, Max had to drink a barium mixture and be looked at with a fluoroscope. They told us they would have to strap him down to a board and they would take a few pictures of his chest and guts over some time intervals. What they didn't tell us was that if Max wouldn't drink barium (and who would for God's sake?) they would have to stick a tube up his nose and down into his stomach. They also didn't mention that the "board" was actually some sort of NASA training device that allowed them to tie down Max with his arms tucked BEHIND his head and then to spin him over on his side as the liquid sloshed around his belly. The good news is that they didn't find anything wrong anatomically to explain his wheezing or reflux. So it's good news because Max won't need any new procedure for anything gastrointestinal prior to transplant.
Whew! This is a long email. In other news, they had a BINGO night here and all the kids came down. The prize cart was a sight to be seen. I am sure all of the prizes were donated, so consider dropping off some toys at a local Ronald McDonald House near you. Luckily for all involved, Grace had a lucky card in the first game, and got a new Barbie. Her friendship with Kendall continues to bloom. She has a form of leukemia called ALL and she'll be admitted for transplant at around the same time as Max. So they'll be transplant buddies and Grace will have two people to visit.
I gotta go check on Margaret and the kids and we have to watch a transplant video tonight and go over our consent forms. We have to sign over the rights to our son's life basically, and from what we've heard, it's a little daunting to see it all written out.
Good night from Minnesota,
mike
posted by Mike Ciacciarelli
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