Henry had his post RAI scan yesterday. It was another missed day of school (that's 21 so far this year if you are keeping track, which I am) and a drive down to Huntsman Cancer Hospital. The scan was easy. He laid on a table and a machine took three pictures - 1 full body and 2 of his neck area. The reason for the scan is two-fold: to check that the radioactive iodine is absorbing in areas that it should and to check for any sign of distant metastases. We know that his cancer was metastatic since it was in his lymph nodes but we're hoping that's as far as it got. Anyway it was nice and easy - no needles, no medication - and we were on our way back to Cache Valley by noon.
Unfortunately they called me while I was driving north and said that they needed another picture. Since I was already in Willard and the weather was deteriorating rapidly and I needed to get home to pick up Tessa we had to schedule another trip down for another scan. He goes back on Saturday afternoon. We would have scheduled it for the morning but he has a Cub Scout swim that he doesn't want to miss. I'm not sure why, since he doesn't really swim that much, but this way he can do both.
Speaking of Cub Scouts, last night we attended Henry's first Blue and Gold Banquet. It's a yearly scouting dinner/awards ceremony that honors everyone from the youngest Cub Scout (Henry's group) to the teenage Boy Scouts who are working on or have already received their Eagle Scouts. Henry received an arrow point to go along with the few that he's already gotten. Thank heavens for a little invention called Badge Magic. It's an adhesive that allows me to avoid pestering my friends for the use of their sewing machines every month when Henry gets something else that I'm supposed to stick on his uniform. Badge Magic is, well, magic. I think it's brilliant and makes my life so much easier than if I had to sew the patches on his uniform, especially since my sewing skills aren't that great to begin with.
So, to recap, we scanned. And we need to rescan. But we're not in the hospital this week or on a special diet so life feels more normal. I actually feel like I can breathe again and concentrate on other things. Like whether I need to make a trip to the Scout store for some more Badge Magic.
Thursday, February 25, 2010
Friday, February 19, 2010
By The Numbers
Henry's RAI treatment went really well. Here are some facts about it:
3 - The number of times the Nuclear Medicine doctor had to try before finding a vein for his IV.
1000 - The number of times Henry cried out, "I'm not getting an IV" during the procedure.
1001 - The number of time Jay and I looked at each other and silently counted to 10 during this ordeal.
12 - The number of people who came to meet Henry in his lead-lined, shrink-wrapped, "Caution - Radiation Within"-signed room.
50 - The approximate number of people who passed by his room and looked inside curiously, wondering what in the world was going on in there.
172 - Henry's TSH level the day before his treatment. We were thrilled that it was so high - the higher, the better for this treatment. Normal is .5 - 4.0. The doctor said the most adults with a TSH of 172 would be lying around whining about how tired they were.
100 - Henry's dose of radioactive iodine. The dosage is measured in millicuries so he received 100 millicuries, just about the maximum dose he could receive for his weight.
19.5 - His radiation output one hour after his dose. This was measured with a geiger counter by our friend John of Radiation Services at Huntsman Cancer Hospital.
6 to 8 - The number of feet away Jay and I had to stay from Henry during the first 24 hours after his treatment.
2 - The maximum number of hours Henry was allowed to sleep at one time that night, as they had to wake him up every two hours to go to the bathroom and drink water.
6.2 - His radiation output 18 hours after his dose.
1 - The number of times Henry threw up.
20 - The number of times he insisted he didn't need or want any anti-nausea medication given to him through his IV, even though he had just thrown up radioactive material.
2.5 - The pieces of French toast he ate after receiving his anti-nausea medication. Apparently he was really hungry after all.
3.7 - His radiation output 22 hours after his dose.
100 - The number of dollars spent getting the right passenger window of the van replaced after it exploded while we were travelling on I-15 after our release from the hospital. Not sure if a rock hit it (probably) or Henry's lingering radioactivity caused it to shatter (kidding!). But, really? Not what we needed after our 24 hours in the hospital. Thank goodness Henry, who was sitting by the aforementioned window, was OK.
There you have it. Our week by the numbers. Thank you so much for your prayers on Henry's behalf. We have felt them and appreciate them more than you know.
3 - The number of times the Nuclear Medicine doctor had to try before finding a vein for his IV.
1000 - The number of times Henry cried out, "I'm not getting an IV" during the procedure.
1001 - The number of time Jay and I looked at each other and silently counted to 10 during this ordeal.
12 - The number of people who came to meet Henry in his lead-lined, shrink-wrapped, "Caution - Radiation Within"-signed room.
50 - The approximate number of people who passed by his room and looked inside curiously, wondering what in the world was going on in there.
172 - Henry's TSH level the day before his treatment. We were thrilled that it was so high - the higher, the better for this treatment. Normal is .5 - 4.0. The doctor said the most adults with a TSH of 172 would be lying around whining about how tired they were.
100 - Henry's dose of radioactive iodine. The dosage is measured in millicuries so he received 100 millicuries, just about the maximum dose he could receive for his weight.
19.5 - His radiation output one hour after his dose. This was measured with a geiger counter by our friend John of Radiation Services at Huntsman Cancer Hospital.
6 to 8 - The number of feet away Jay and I had to stay from Henry during the first 24 hours after his treatment.
2 - The maximum number of hours Henry was allowed to sleep at one time that night, as they had to wake him up every two hours to go to the bathroom and drink water.
6.2 - His radiation output 18 hours after his dose.
1 - The number of times Henry threw up.
20 - The number of times he insisted he didn't need or want any anti-nausea medication given to him through his IV, even though he had just thrown up radioactive material.
2.5 - The pieces of French toast he ate after receiving his anti-nausea medication. Apparently he was really hungry after all.
3.7 - His radiation output 22 hours after his dose.
100 - The number of dollars spent getting the right passenger window of the van replaced after it exploded while we were travelling on I-15 after our release from the hospital. Not sure if a rock hit it (probably) or Henry's lingering radioactivity caused it to shatter (kidding!). But, really? Not what we needed after our 24 hours in the hospital. Thank goodness Henry, who was sitting by the aforementioned window, was OK.
There you have it. Our week by the numbers. Thank you so much for your prayers on Henry's behalf. We have felt them and appreciate them more than you know.
Wednesday, February 17, 2010
Caution...Enter At Your Own Risk
Radiation is a funny thing. Everyone is exposed to it but you really want to limit any unnecessary exposure, just to be on the safe side. And safe we are being here at the Huntsman Cancer Hospital.
Henry's hospital room is like a regular room but with a better TV. Everything that he will be in contact with is covered with paper or plastic wrap. He is confined to walking on the paper to and from the bathroom. Since his only job right now is to drink and pee, he's good. Jay and I are limited to a small corner of the room. There is a lead screen in place to minimize our direct contact with whatever radiation Henry is putting out. If we walk across the room to leave (get some food, go to the bathroom) we have to put on booties, a gown and gloves and take them all off before we leave the room. It takes us longer to put on the gear than to walk across the room. But it's only until we are released (hopefully tomorrow by lunchtime or so) so we'll deal with it.
He was incredibly mad to find out that he needed an IV today. He got even madder when it took the tech three tries to find a vein that wouldn't collapse. Sigh. But Mr. Rock Star had a whole host of people waiting to meet and help him so he feels better now. The treatment doesn't seem to have caused any ill side effects. He has an unlimited supply of popsicles, juice and soda. He has two basketball games on tap to watch tonight. Right now, he's feeling pretty good about things. And so are we. Our hope of a nice, easy, boring day in the hospital are being met. I don't think we can ask for much better than that.
Henry's hospital room is like a regular room but with a better TV. Everything that he will be in contact with is covered with paper or plastic wrap. He is confined to walking on the paper to and from the bathroom. Since his only job right now is to drink and pee, he's good. Jay and I are limited to a small corner of the room. There is a lead screen in place to minimize our direct contact with whatever radiation Henry is putting out. If we walk across the room to leave (get some food, go to the bathroom) we have to put on booties, a gown and gloves and take them all off before we leave the room. It takes us longer to put on the gear than to walk across the room. But it's only until we are released (hopefully tomorrow by lunchtime or so) so we'll deal with it.
He was incredibly mad to find out that he needed an IV today. He got even madder when it took the tech three tries to find a vein that wouldn't collapse. Sigh. But Mr. Rock Star had a whole host of people waiting to meet and help him so he feels better now. The treatment doesn't seem to have caused any ill side effects. He has an unlimited supply of popsicles, juice and soda. He has two basketball games on tap to watch tonight. Right now, he's feeling pretty good about things. And so are we. Our hope of a nice, easy, boring day in the hospital are being met. I don't think we can ask for much better than that.
Tuesday, February 16, 2010
Tomorrow...
...we go radioactive. Henry has already had his tracer dose (a low dose of radioactive iodine that they use to test the uptake in the thyroid cells) and said that "it tasted good." It was interesting walking into a room called the Hot Lab with all kinds of Warning...Radioactive Material signs posted. And then I just sat back and had him drink some of that radioactive material.
Tomorrow he doesn't even get to go to the Hot Lab. They will give him his dose of radioactive iodine (or RAI as we say in the thyroid cancer world) in his own little lead-lined room at the Huntsman Cancer Hospital, presumably so he isn't walking the halls, excreting radioactivity as he goes. Henry seems fairly nonchalant about the whole thing - the doctor called him Spiderman and told him that his only job tomorrow was to "drink lots of fluids and pee", since that is the best way to decrease the radioactivity in the first 24 hours. He laughed and asked me to buy him some Sprite to drink tomorrow. I'm still a little freaked out about the whole thing but I really feel good about our chances of having a cancer free Henry so that helps me not freak out as much.
Henry is also looking forward to dropping the low iodine diet that he's been on for two weeks. I think he's planning on pizza, pizza, and more pizza. And Oreos. And Gatorade. And ice cream. Maybe a trip to McDonald's thrown in for good measure. We may go broke feeding Henry's cravings over the next few days, but that's OK. He's been a really good sport about this whole thing (for the most part) and we're happy to have this almost over.
Prayers, as always, are appreciated. I'll update sometime over the next few days, depending on when I can wrestle Jay's work laptop away from him. We were going to borrow the iTouch that they have at work so that we can both play around on the internet (as opposed to staring at Henry as he drinks and pees), but apparently it was needed for some big meeting tomorrow and Thursday. The nerve!
Tomorrow he doesn't even get to go to the Hot Lab. They will give him his dose of radioactive iodine (or RAI as we say in the thyroid cancer world) in his own little lead-lined room at the Huntsman Cancer Hospital, presumably so he isn't walking the halls, excreting radioactivity as he goes. Henry seems fairly nonchalant about the whole thing - the doctor called him Spiderman and told him that his only job tomorrow was to "drink lots of fluids and pee", since that is the best way to decrease the radioactivity in the first 24 hours. He laughed and asked me to buy him some Sprite to drink tomorrow. I'm still a little freaked out about the whole thing but I really feel good about our chances of having a cancer free Henry so that helps me not freak out as much.
Henry is also looking forward to dropping the low iodine diet that he's been on for two weeks. I think he's planning on pizza, pizza, and more pizza. And Oreos. And Gatorade. And ice cream. Maybe a trip to McDonald's thrown in for good measure. We may go broke feeding Henry's cravings over the next few days, but that's OK. He's been a really good sport about this whole thing (for the most part) and we're happy to have this almost over.
Prayers, as always, are appreciated. I'll update sometime over the next few days, depending on when I can wrestle Jay's work laptop away from him. We were going to borrow the iTouch that they have at work so that we can both play around on the internet (as opposed to staring at Henry as he drinks and pees), but apparently it was needed for some big meeting tomorrow and Thursday. The nerve!
Friday, February 12, 2010
Notes from a Cloudy Winter's Day
*Henry is really starting to slow down. He missed school today because he just couldn't get up and going this morning. That's OK - I'm impressed that he made it through the week so far. He'll miss all next week for his treatment and then hopefully be good to go the week after that (except for some followup doctor appointments).
*Tessa had a little too much fun boxing on the Wii this morning. I heard her say, "You're going down to Chinatown" and counting down the knockouts. I also realized that of all the Mii's she could choose to box against, she chose me. Not sure what that says about our relationship right now, but there you have it.
*William has had entirely too many treats this week with all the activities that kindergarten has to offer. He walks around with a goofy grin on his face that I think is a crashing sugar high.
*Henry has decided to be mad at me because of all the things he has missed because of his thyroid cancer and it's treatment, including two sledding parties, four of his seven basketball games this season, pizza day at school (pizza is a no-no on the Low Iodine Diet), Valentine's Day treats (same thing), and the Spelling Bee. He was chosen as one of two students to represent his class in the school spelling bee and he'll at the Huntsman Cancer Hospital that day. I believe I heard the words "Stupid Thyroid Cancer" the other day. I couldn't agree more.
*Things may look up for the weekend, though, thanks to our friend Melissa who loaned us her snow cone machine. Since sugar is OK on the Low Iodine Diet we are making sour grape snowcones now. I realize that it's February and we normally don't have snow cones in February but it made Henry smile and we haven't had too much of that lately. So snow cones it is. We'll just turn up the gas fireplace and indulge.
*Tessa had a little too much fun boxing on the Wii this morning. I heard her say, "You're going down to Chinatown" and counting down the knockouts. I also realized that of all the Mii's she could choose to box against, she chose me. Not sure what that says about our relationship right now, but there you have it.
*William has had entirely too many treats this week with all the activities that kindergarten has to offer. He walks around with a goofy grin on his face that I think is a crashing sugar high.
*Henry has decided to be mad at me because of all the things he has missed because of his thyroid cancer and it's treatment, including two sledding parties, four of his seven basketball games this season, pizza day at school (pizza is a no-no on the Low Iodine Diet), Valentine's Day treats (same thing), and the Spelling Bee. He was chosen as one of two students to represent his class in the school spelling bee and he'll at the Huntsman Cancer Hospital that day. I believe I heard the words "Stupid Thyroid Cancer" the other day. I couldn't agree more.
*Things may look up for the weekend, though, thanks to our friend Melissa who loaned us her snow cone machine. Since sugar is OK on the Low Iodine Diet we are making sour grape snowcones now. I realize that it's February and we normally don't have snow cones in February but it made Henry smile and we haven't had too much of that lately. So snow cones it is. We'll just turn up the gas fireplace and indulge.
Monday, February 8, 2010
Field Trip
Jay took the boys down to a Utah Jazz game Saturday night. He was able to get tickets from his work and boy, were they good tickets. Here are a few pictures:
Henry before the game:
William with Bear:
Henry's favorite player - Deron Williams (Henry wears his #8 jersey with pride):
Tip-Off against the Denver Nuggets (or the Nuggies as we call them in our house):
Jay plied him with Red Vines and soda while Andrew sheparded William back to their seats.
We figured that Jay and the boys have been down to Salt Lake on three of the past seven Saturdays for basketball games (two Jazz games and a Ute game). As much as we enjoy sports in our house, I think he's paid his dues for the year. I think we'll enjoy the rest of the games from the comfort of our Cache Valley home.
Henry before the game:
William with Bear:
Henry's favorite player - Deron Williams (Henry wears his #8 jersey with pride):
Tip-Off against the Denver Nuggets (or the Nuggies as we call them in our house):
They had a great time! Uncle Andrew was able to go as well, which was helpful when Henry had a small meltdown that he couldn't eat any popcorn at halftime (because of the low iodine diet).
We figured that Jay and the boys have been down to Salt Lake on three of the past seven Saturdays for basketball games (two Jazz games and a Ute game). As much as we enjoy sports in our house, I think he's paid his dues for the year. I think we'll enjoy the rest of the games from the comfort of our Cache Valley home.
Saturday, February 6, 2010
When It Rains...
Poor Henry can't catch a break. He was felled this week by the stomach flu. Normally he's pretty quick to fight those things off, but he was down and out from Wednesday through Friday this week. William was sick as well but seemed to bounce back a lot more quickly this time.
Henry barely ate anything while he was sick, which made for an easy segue to the Low Iodine Diet that he is now on in preparation for his Radioactive Iodine Treatment. It has been scheduled for Wednesday, February 17th at the Huntsman Cancer Hospital. He'll be admitted for a day or so and then be released to further isolation. Aunt Laura is graciously offering us the use of her home for those days so Henry can just camp out in a single room and a bathroom while he is, for lack of a better term, radioactive. It's a generous offer and actually works out well for everyone, since she's taking a well-deserved vacation that weekend anyway. This will work out better than bringing him home, since William and Tessa can basically stay with their normal routines and not worry about having to keep their distance from Henry.
Speaking of the Low Iodine Diet, it's harder than I thought it would be. He can't eat anything with dairy or egg yolks or with iodized salt. That cuts out most commercially prepared foods. That heavens for the Low Iodine Cookbook from thyca.org - so far Henry likes the muffins and finds the cinnamon bread and sesame chicken nuggets so-so. He's been a good sport so far, but then again I'm not sure his appetite is fully back from the flu last week. I have a feeling that by the time we've been on this diet for another week he'll be losing his patience with his food choices. We promised him a huge cheese pizza after this was all over.
I think I should probably be a little more freaked out about the details of this treatment than I am. A Nuclear Medicine doctor will administer the dose of radioactive iodine to him and then he'll be confined to a lead-lined room until the radiation specialists at the hospital determine that he's OK to leave. He'll be given an anti-nausea medication since the treatment can cause nausea and they really, really don't want him to throw up, given that it would be hazardous material and all. Every time I talk to a doctor on the phone I remind them of his age and that we won't just be able to leave him on his own for 24 hours. I'm hopeful that Jay and I can sit across the room from him after a time and we plan to stay with him that night, although I'm not sure how that all will work. Worst case scenario is that we take turns sitting in his doorway if we still can't get too close by the time he is ready to go to sleep. I guess we'll see. It makes me uncomfortable to be signing up for a treatment that actually puts a dose of radioactive medicine into an 8 year old's body but the alternative isn't any better. We either treat it aggressively so that he has the best chance of being cancer free or we wait and see and hope that it doesn't spread, which given the lymph node involvement that we saw from his pathology report isn't likely. It might be years before it shows up but the odds would be good that it would and then it would be harder to treat. So we treat him and hope that the long term effects aren't too bad.
My dear friend Melissa blogged about things that she wonders about and one of those things is "why do kids get cancer." That has been on my mind a lot lately as well. When I'm really feeling down I am convinced it's something that I did when I was pregnant with him. But I know that it was probably just the luck of the genetic draw, a fluke in his DNA that caused his cells to go crazy. And so we just move forward and do the best we can to kill those cells so that he can go on and live a long, productive life.
One thing is for sure, the stomach flu didn't seem too bad this time. Normally I hate when my kids have the stomach flu, but I just kept thinking, "It's no big deal, it's just the stomach flu. It'll go away." Hopefully I can say that about Henry's thyroid cancer one day - "It was no big deal - we treated it and it went away." I look forward to that day.
Henry barely ate anything while he was sick, which made for an easy segue to the Low Iodine Diet that he is now on in preparation for his Radioactive Iodine Treatment. It has been scheduled for Wednesday, February 17th at the Huntsman Cancer Hospital. He'll be admitted for a day or so and then be released to further isolation. Aunt Laura is graciously offering us the use of her home for those days so Henry can just camp out in a single room and a bathroom while he is, for lack of a better term, radioactive. It's a generous offer and actually works out well for everyone, since she's taking a well-deserved vacation that weekend anyway. This will work out better than bringing him home, since William and Tessa can basically stay with their normal routines and not worry about having to keep their distance from Henry.
Speaking of the Low Iodine Diet, it's harder than I thought it would be. He can't eat anything with dairy or egg yolks or with iodized salt. That cuts out most commercially prepared foods. That heavens for the Low Iodine Cookbook from thyca.org - so far Henry likes the muffins and finds the cinnamon bread and sesame chicken nuggets so-so. He's been a good sport so far, but then again I'm not sure his appetite is fully back from the flu last week. I have a feeling that by the time we've been on this diet for another week he'll be losing his patience with his food choices. We promised him a huge cheese pizza after this was all over.
I think I should probably be a little more freaked out about the details of this treatment than I am. A Nuclear Medicine doctor will administer the dose of radioactive iodine to him and then he'll be confined to a lead-lined room until the radiation specialists at the hospital determine that he's OK to leave. He'll be given an anti-nausea medication since the treatment can cause nausea and they really, really don't want him to throw up, given that it would be hazardous material and all. Every time I talk to a doctor on the phone I remind them of his age and that we won't just be able to leave him on his own for 24 hours. I'm hopeful that Jay and I can sit across the room from him after a time and we plan to stay with him that night, although I'm not sure how that all will work. Worst case scenario is that we take turns sitting in his doorway if we still can't get too close by the time he is ready to go to sleep. I guess we'll see. It makes me uncomfortable to be signing up for a treatment that actually puts a dose of radioactive medicine into an 8 year old's body but the alternative isn't any better. We either treat it aggressively so that he has the best chance of being cancer free or we wait and see and hope that it doesn't spread, which given the lymph node involvement that we saw from his pathology report isn't likely. It might be years before it shows up but the odds would be good that it would and then it would be harder to treat. So we treat him and hope that the long term effects aren't too bad.
My dear friend Melissa blogged about things that she wonders about and one of those things is "why do kids get cancer." That has been on my mind a lot lately as well. When I'm really feeling down I am convinced it's something that I did when I was pregnant with him. But I know that it was probably just the luck of the genetic draw, a fluke in his DNA that caused his cells to go crazy. And so we just move forward and do the best we can to kill those cells so that he can go on and live a long, productive life.
One thing is for sure, the stomach flu didn't seem too bad this time. Normally I hate when my kids have the stomach flu, but I just kept thinking, "It's no big deal, it's just the stomach flu. It'll go away." Hopefully I can say that about Henry's thyroid cancer one day - "It was no big deal - we treated it and it went away." I look forward to that day.
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