Miss Megan is starting to be pretty tired and feeling fairly miserable again. She's sleeping 12 hours a night and now today she's only been up for 90 minutes to eat and take her medicine and is back asleep again. Yesterday we had to go back to St. John's to see the oncologist because her shoulder was hurting so bad she could hardly move it. He gave her a muscle relaxer prescription, which did help some last night. Her vision is getting worse again, very blurry for the TV and reading, and it seems like her right eye is starting to look a little more cross-eyed, like it is tending to go in toward her nose a bit more. The oncologist wants us to see an opthomologist while we're at MD Anderson. She's getting pretty naucous too, so we had to have another prescription for Zofran. Now yesterday and today she's had nose bleeds, I guess from the blood thinners.
She's had blood draws twice a week for the past couple of weeks to keep checking to see if her blood is too thin. Each time the level has been too high, with her blood too thin, so they've kept reducing her medication amounts. Finally yesterday it was normal! However she's had the nose bleeds...so not sure what that is exactly about. We go back again on Monday to check it one more time before she leaves for Houston on Tuesday.
I talked with MD Anderson today and got the schedule for our first two days there. They said the next few days plans after that depend on the thyroid body scans, imaging study, blood work and ultrasound. So he hasn't scheduled her in-patient stay yet -- he waits to see the results and then schedules the next steps. I will say, they are very thorough and methodical. St. John's hadn't been quick about sending the pathology slides and imaging CD's and they called me to get on St. John's. The nurses at St. John's found out that the imaging department had forgotten to mail them...grrr...so they over nighted them and MDA got them yesterday. However, the slides had been sent to Siteman at Barnes, and they had to get them back from Barnes so they could go to MDA, and they still don't have them. Hmmm, wonder if I should just go get them and bring them with me on the plain or Saturday over night them??? A thought....so I just called St John's and put out that offer.
Oh now she's woken up again and her head is really hurting...more Dilaudid today...darn and she had finally been off the pain medicine for 2 weeks and now she's needed it the past 2 days...not good. :(
Friday, March 25, 2011
Thursday, March 24, 2011
Ronald McDonald and Final 4...grrrr
Wow has it been a difficult week trying to figure out lodging. We are finally "officially" on the list for the Ronald McDonald House, but we have to call between 9 - 11 am on the day we fly to Houston to see if they have a room available that night. If they do, we can stay for 45 days. If not, we have to have another place to stay and call each day to see if they have a room available. How frustrating!
But it gets worse...being female and all...who knew the Final 4 will be in Houston during the week we are going to be there??
So about 20 phone calls later, I finally pieced together 2 hotels (still need one for the last night) that won't break the bank tooo bad, and they have kitchenette's. It would still be sooo much cheaper at the Ronald McDonald House and we might not have to change places...so I'm praying for an opening. Thanks to Chris for trying to help with RMD! A big thanks to Aunt Marie and Kell and Michelle for tyring to help us find a decent rate at just ONE hotel...some of the rates are almost $400 a night!!
I still don't know what airport we fly into or what time we leave...Lovely Keri is trying to arrange a ride for us in Houston from her sister, which is so sweet!!
Can I just say how incredibly thankful I am to have such wonderful people in our lives. Some days I just can hardly fathom where we would be without everyone on our side. From using a gift card at Schnucks, someone bringing Megan a doll horse or a gift card that puts a smile on her face, prayers at a board meeting, Facebook notes, flowers, cards, shoveling our driveway, laying tile, making phone calls to hotels, calling friends to help out, doing our laundry, raising money, hauling tables, making food, copying checks, making baskets, tutoring Megan, getting us an EIN, hauling a bathtub across St. Peters, and just so many more examples of the unbelievable friends and family I am honored to know and love. I have bought about 100 thank you cards to write...I promise I will get around to sending each and everyone of you a small token of our gratitude...but until then THANK YOU!!!!!
But it gets worse...being female and all...who knew the Final 4 will be in Houston during the week we are going to be there??
So about 20 phone calls later, I finally pieced together 2 hotels (still need one for the last night) that won't break the bank tooo bad, and they have kitchenette's. It would still be sooo much cheaper at the Ronald McDonald House and we might not have to change places...so I'm praying for an opening. Thanks to Chris for trying to help with RMD! A big thanks to Aunt Marie and Kell and Michelle for tyring to help us find a decent rate at just ONE hotel...some of the rates are almost $400 a night!!
I still don't know what airport we fly into or what time we leave...Lovely Keri is trying to arrange a ride for us in Houston from her sister, which is so sweet!!
Can I just say how incredibly thankful I am to have such wonderful people in our lives. Some days I just can hardly fathom where we would be without everyone on our side. From using a gift card at Schnucks, someone bringing Megan a doll horse or a gift card that puts a smile on her face, prayers at a board meeting, Facebook notes, flowers, cards, shoveling our driveway, laying tile, making phone calls to hotels, calling friends to help out, doing our laundry, raising money, hauling tables, making food, copying checks, making baskets, tutoring Megan, getting us an EIN, hauling a bathtub across St. Peters, and just so many more examples of the unbelievable friends and family I am honored to know and love. I have bought about 100 thank you cards to write...I promise I will get around to sending each and everyone of you a small token of our gratitude...but until then THANK YOU!!!!!
Tuesday, March 22, 2011
Travel Time
It feels like it's been forever trying to figure out everything for Megan's treatment. Last Monday we went to St John's for another blood draw to measure her TP/INR blood levels from the blood thinner med. They continue to be too high and they keep lowering her dosage. So while we were there I talked to the office lades so see if they knew anything about the scheduling. Unfortunately, they didn't know anything. So when the Dr. got back in from the hospital, they talked with him, and then called MD Anderson to see about getting the treatment scheduled. They found the scheduling person, and after being transfered 5 times, I talked with her on Tuesday (She had tried to call me, but they had given her the wrong number). She then sent an email to the endocrinologist about scheduling and duration of stay info. I then had to get the St. John's office to send the endocrinologist CD's of all scans and all pathology slides.
She called back on Thursday with 2 different possible dates. I wanted the earliest date because she is already off thyroid medicine and on the low-iodine diet. So she had to email the Dr. again and see if he could squeeze her in on the 31st. So Friday afternoon around 4 pm I got the call from MD Anderson confirming her appointment on March 30 for registration, blood work, ultrasound and thyroid scan. We will then meet with the doctor on the 31st to discuss the results of the scan and have the treatment. She will be checked into the hospital then, and stay for 24 hours. We then have to go back to see him on Monday for another thyroid scan and results. If all goes well, we plan to come back home on Tuesday.
Luckily Wings of Hope is very flexible. I talked with their coordinator yesterday. I had to have all the details of the flight coordinated, signed permission from the oncologist, and lots of info for them before it could be scheduled. They even wanted both of our weights and told us we can only have 40 pounds of baggage between us. Eek! I finally got it all done yesterday and was able to fax it to them this morning up at DuBray. The woman was so sweet, she let me know that they would be happy to help us with flights all through her treatment. How awesome is that?!?! So then I promptly called my doctor and told them that I get really sick when flying on small plains. So she called me back to say that they had called in a prescription for Zanax. I then had to call back and say, NOT anxiety, puking!! So then she called me in a patch that is supposed to be better than the pills. Keep those fingers crossed for me! :0)
So then I had to talk with the pediatric social work department at MD Anderson. That was a whole slew of calls too. Someone was off that day, but another social worker was filling in, and they told me to call Ronald McDonald House. The volunteer took all my info. Then another volunteer called me back to say I couldn't give them the info for the background check, that the hospital has to do it for me. Of course, she called the lady that wasn't there. So then I had to call the social worker back and tell her she had to get them the info for the background ckeck. So difficullt. Finally the correct social worker called me this morning to tell me they were sending Ronald McDonald House our application. So hopefully we'll know later today or tomorrow if they have availability. If not, back to the drawing board. Also need to figure out ground transportation from the airport to where we are staying. I'm not sure what airport they will fly into..in St. Louis it's Spirit in Chesterfield, so I'm not sure what Houston will be like.
Megan is keeping an eye on the Houston weather. Sunny and low 80's this week. Looking at rain Sunday and Monday...no rain on Tuesday please...
I said maybe on Sunday I can rent a car for the day and drive us the 30 minutes to the beach. Laying in some warm weather looking at the ocean sounds delightful about now. :)
She called back on Thursday with 2 different possible dates. I wanted the earliest date because she is already off thyroid medicine and on the low-iodine diet. So she had to email the Dr. again and see if he could squeeze her in on the 31st. So Friday afternoon around 4 pm I got the call from MD Anderson confirming her appointment on March 30 for registration, blood work, ultrasound and thyroid scan. We will then meet with the doctor on the 31st to discuss the results of the scan and have the treatment. She will be checked into the hospital then, and stay for 24 hours. We then have to go back to see him on Monday for another thyroid scan and results. If all goes well, we plan to come back home on Tuesday.
Luckily Wings of Hope is very flexible. I talked with their coordinator yesterday. I had to have all the details of the flight coordinated, signed permission from the oncologist, and lots of info for them before it could be scheduled. They even wanted both of our weights and told us we can only have 40 pounds of baggage between us. Eek! I finally got it all done yesterday and was able to fax it to them this morning up at DuBray. The woman was so sweet, she let me know that they would be happy to help us with flights all through her treatment. How awesome is that?!?! So then I promptly called my doctor and told them that I get really sick when flying on small plains. So she called me back to say that they had called in a prescription for Zanax. I then had to call back and say, NOT anxiety, puking!! So then she called me in a patch that is supposed to be better than the pills. Keep those fingers crossed for me! :0)
So then I had to talk with the pediatric social work department at MD Anderson. That was a whole slew of calls too. Someone was off that day, but another social worker was filling in, and they told me to call Ronald McDonald House. The volunteer took all my info. Then another volunteer called me back to say I couldn't give them the info for the background check, that the hospital has to do it for me. Of course, she called the lady that wasn't there. So then I had to call the social worker back and tell her she had to get them the info for the background ckeck. So difficullt. Finally the correct social worker called me this morning to tell me they were sending Ronald McDonald House our application. So hopefully we'll know later today or tomorrow if they have availability. If not, back to the drawing board. Also need to figure out ground transportation from the airport to where we are staying. I'm not sure what airport they will fly into..in St. Louis it's Spirit in Chesterfield, so I'm not sure what Houston will be like.
Megan is keeping an eye on the Houston weather. Sunny and low 80's this week. Looking at rain Sunday and Monday...no rain on Tuesday please...
I said maybe on Sunday I can rent a car for the day and drive us the 30 minutes to the beach. Laying in some warm weather looking at the ocean sounds delightful about now. :)
Friday, March 11, 2011
MD Anderson it is!!
What an eventful week. So much going on, my head is just full!!
Tuesday morning the oncologist called and said he'd done his research, made some phone calls and felt MD Anderson was the best place for Megan to get her treatments. He said the endocrinologist was super nice, very helpful and willing to consult with him on Megan's case. His treatment plan was fairly different than Siteman's plan, so the decision was very easy to make.
Tuesday morning the oncologist called and said he'd done his research, made some phone calls and felt MD Anderson was the best place for Megan to get her treatments. He said the endocrinologist was super nice, very helpful and willing to consult with him on Megan's case. His treatment plan was fairly different than Siteman's plan, so the decision was very easy to make.
- They wanted her off any thyroid medicine and on the low-iodine diet for 2 1/2 weeks.
- They will give her a very small dose of radioactive iodine (RAI) on day 1.
- She will come back on day 2 and have a full body thyroid scan.
- Then based on the results of the scan, he will give a second appropriate dose of RAI to kill as much of the active cancer as possible, that is safe for Megan to have.
So our oncologist said he'd email the doctor and start the referral paperwork. My biggest fear was the insurance issue. He was worried about getting and staying there and I said I could handle that, but the deductible and co-insurance amounts is what I'm worried about. He said he'd have his office staff call United Healthcare and start the process with them.
That was a whole lot of great information, but it still left a lot of questions. When do we go? How long will we be there? How will we get there? Where will we stay? How often will we have to go back to Houston? Can she even fly commercially back home since she will be radioactive? Megan gets car sick and she'd have to ride in the very back seat home - how would she do on the ride, especially after just having had her treatment?
I looked up MD Anderson online and starting reading their information. They are an entire Hospital, not center, just for cancer. They are the #1 cancer treatment facility in the country, and one of the top in the world. They obtain more cancer research grants and money than any other facility in the country. They are one of only a few centers that treat pediatric endocrine cancers in the country. WOW. I'm thrilled that Megan is going to have such incredible care.
During this time we were also making the switch from the shots twice a day to Coumadin pills. So she had to get blood taken every 2 days for the past week. Luckily she spiked high number fairly quickly and was able to finish the shots on Tuesday and totally switch to pills. Thursday her levels were high, so he reduced her from 5 pills to 4 pills of Coumadin a day. So now overall, she's down to 11 pills a day, plus the Calcium, inhaler and nose spray. She's done with shots, the steroid (which gave her terrible side effects which will take awhile to completely go away). Her eye sight is still blurry and double off and on, but not near as bad. Her hearing is still dulled some, is tingly in different parts of her body off and on, and her legs, butt and back hurt pretty bad. She just has occasional headaches, but they don't last as long and go away with the pain med. MUCH improvement overall. She's definitely loving TV and the internet again. She loves when the kids get home from school and she can get on Facebook and chat. Animal cops and ABC Family channel are her favorites right now. She's pretty tired of Disney shows reruns - amazing!! She does still like when they have new episodes though. :)
New this week is the low-iodine diet. Wow isn't this a challenge. NO commercial bread products, dairy, soy, egg yolk, rice, almost anything pre-packaged. So I've made from scratch a bunch of things -- banana bread, french bread, cinnamon pancakes, apple juice/applesauce oatmeal, coconut/applesauce oatmeal, no salt added spaghetti sauce, pork chops, fried deer burger, fruit salad and jello. Grocery shopping is interesting. I've looked up products online before even heading to the store. I have to read all the labels and am buying all organic. I'm still not sure if unsalted butter is allowed. I'm guessing no, but I did use it just a little. The breads are with egg whites, oil and applesauce instead of eggs and butter. They were pretty darn good actually. The oatmeal was super too. I made a huge things of spaghetti sauce so she's been stuck eating that a bunch this week. I emailed JIFF peanut butter and they use un-iodized salt so she's had the low-sodium version for sandwiches. Also hot dogs with no bread works. She loves the pure maple syrup for the pancakes. Tomorrow is sausage and egg whites for breakfast. I bought unsweetened cocoa to make a cake for her. They even have a recipe for icing.
I was doing my organic shopping when I ran into my neighbor Gwen. I told her about going to Houston and she was telling me about Wings of Hope and Angel Flight. Carol had mentioned them too. So Gwen's hubby Scott is a professional pilot and flies out of Chesterfield. Long story short -- Scott made some connections with Wings of Hope and they were thrilled to be able to help us fly back and forth to Houston. Gwen even brought over a picture of the pain we will fly in. Megan is super excited!!! I get air sick pretty bad...so I'm calling the doctor and asking for a major dose of motion sickness pills and packing barf bags just in case. eek. but, if Megan can handle cancer treatment, I can handle a little air sickness. :)
My friend Cindy called tonight and she called Ronald McDonald House for me. The lady said the hospital has to make the referral, that I can't just do it myself. So I have to call MD Anderson and talk with their social work department. St. John's was talking about that also on Thursday, that their social worker handles all the lodging for patients coming into St. Louis for treatment. So I guess it all makes sense. The lady also told Cindy that I need to do it very quickly because they book up very quickly. The house has 50 private rooms with bathrooms. It's $25 a night. St. Louis' house is only $5 a night. Interesting. But, the house is walking distance from the hospital and they have a shuttle that goes to the hospital at all times. I actually think it would be neat to stay there. Just the experience of it and being with other families in the same situation. I'm sure not something you'd want to do forever, but just interesting and fulfilling in some way...hard to describe how I feel.
Also while at St. John's on Thursday, they decided we need a nurse case manager, which is available through our insurance. The lady called UHC and set up the process. We should have a call on Monday from someone who will help guide us through the maze of cancer I guess. Not sure exactly what to expect, but I'm sure it can't hurt.
While she was on the phone with the insurance and we were there, she started the referral process for the MD Anderson stuff. She said all the things we'd have to do to get it approved and how to prove that we need to go out of town to get appropriate care. Then the insurance lady asked the Dr. in Houston's name. She looked him up -- and both the endocrinologist and MD Anderson are IN NETWORK!!!! HOLY COW!! Finally some amazing news! That's a $20,000 difference right off the bat I'm sure. I was ready to cry I was so happy. That was the biggest barrier I was scared of. That kind of out-of-network care would be a serious medical debt, especially over time because they will follow her for years to come. 50% of patients that go through treatment have other endocrine issues post-treatment and they follow and track everyone they treat. I think our lives have changed forever.
Friday, March 4, 2011
March 4 - St. Jude or MD Anderson???
We went to see the oncologist at St. John's yesterday. I'd had 2 days to think on the Siteman Center treatment plan vs. the St. John's treatment plan. Bottom line -- I'm confused. They are just so different. Many of the differences don't really matter a whole lot, but one does -- the dosage of radioactive iodine given. So I brought up my confusion and frustration. How do I know what's right? Why don't they know how to treat it? I was in tears...
Siteman only sees typically 5 kids a year. No one else in St. Louis treats kids for thyroid cancer. Is it that much different than adult thyroid cancer? Well, kids typically present with much more advanced cases. Megan had 4 hard tumors, spreading to lymph nodes and is possibly in the lungs. That's not typical in adults. When it is, it's much more complicated to treat. St. John's sees an equal amount of thyroid cancer patients as Siteman, but Siteman includes the 5 kids a year. Plus, their nuclear medicine dr. doesn't agree with the Siteman Dr.'s dosage plan for Megan (and he doesn't like the dr. either). Siteman wants to give a small dose and St. John's a small dose and 2 days later a large dose. So, the oncologist agreed we need a third opinion. I said I'm open to any option -- in-state or out-of-state. He said he'd call a Dr. friends at St. Jude in Memphis and MD Anderson in Houston. He would have to call them, send her case information and get a response. It would take at least a week before he'd have more information.
So I went home and got on-line. St. Jude doesn't really seem to specialize in thyroid cancer either. They have "hard tumor" clinical trials, but none that are specifically endocrine. They do consult with doctors. I guess that's part of their protocol - sharing knowledge with other doctors for treatments to be done in their own home hospitals. When they choose to take a case, it seems like they have to participate as part of their clinical trials. The good news is - it's free. Insurance pays their portion and the rest is paid for through donations. Lodging is also covered. That would be a huge bonus. Plus it's only in Memphis.
MD Anderson actually has a whole pediatric thyroid cancer program!!!! They are one of only a few in the country that specialize in this cancer in children. Amazing! Of course, they wouldn't be free. I guess it would be out-of-network coverage and a higher $15,000 deductible per year. Maybe they could consult with the oncologist and help direct the treatment at St. John's? If not, maybe we go to Houston? It's a 14 hour drive, plus stops. Carol already mentioned Wings of Hope for possible flight? Ronald McDonald House? My aunts co-worker friend's brother in law could possibly get us free hotel stay when necessary??
Gosh, so many complicated thoughts are in my mind...
Siteman only sees typically 5 kids a year. No one else in St. Louis treats kids for thyroid cancer. Is it that much different than adult thyroid cancer? Well, kids typically present with much more advanced cases. Megan had 4 hard tumors, spreading to lymph nodes and is possibly in the lungs. That's not typical in adults. When it is, it's much more complicated to treat. St. John's sees an equal amount of thyroid cancer patients as Siteman, but Siteman includes the 5 kids a year. Plus, their nuclear medicine dr. doesn't agree with the Siteman Dr.'s dosage plan for Megan (and he doesn't like the dr. either). Siteman wants to give a small dose and St. John's a small dose and 2 days later a large dose. So, the oncologist agreed we need a third opinion. I said I'm open to any option -- in-state or out-of-state. He said he'd call a Dr. friends at St. Jude in Memphis and MD Anderson in Houston. He would have to call them, send her case information and get a response. It would take at least a week before he'd have more information.
So I went home and got on-line. St. Jude doesn't really seem to specialize in thyroid cancer either. They have "hard tumor" clinical trials, but none that are specifically endocrine. They do consult with doctors. I guess that's part of their protocol - sharing knowledge with other doctors for treatments to be done in their own home hospitals. When they choose to take a case, it seems like they have to participate as part of their clinical trials. The good news is - it's free. Insurance pays their portion and the rest is paid for through donations. Lodging is also covered. That would be a huge bonus. Plus it's only in Memphis.
MD Anderson actually has a whole pediatric thyroid cancer program!!!! They are one of only a few in the country that specialize in this cancer in children. Amazing! Of course, they wouldn't be free. I guess it would be out-of-network coverage and a higher $15,000 deductible per year. Maybe they could consult with the oncologist and help direct the treatment at St. John's? If not, maybe we go to Houston? It's a 14 hour drive, plus stops. Carol already mentioned Wings of Hope for possible flight? Ronald McDonald House? My aunts co-worker friend's brother in law could possibly get us free hotel stay when necessary??
Gosh, so many complicated thoughts are in my mind...
Tuesday, March 1, 2011
March 1 - The treatment plan
Today we headed to Siteman Cancer Center. We got there 10 minutes early and it still took until 35 minutes after our apppt time until we got back to a room. First we saw the nurse, then the resident and then the thyroid specialist along with the other two. They each explained things a bit different, but here is what we got from them.
1. Today they took blood to get TSH, thyroglobulin and calcium levels. To start the treatment she needs to have a TSH level of 30. After the treatment the goal is to have it at 0 - .01, which is lower than the average persons level of .03 - 5%. The lower the level, the lower likelyhood of cancer recurrence. They think the amount of Cytomel that she is on should get her to the 30 she needs to proceed with treatment.
2. We will stop her low-dose thyroid medicine on Monday, March 7. Side effects of being off thyroid medicine are: fatigue, weight gain, nausia. She will be off the medicine for the two weeks prior to the Radioactive Iodine treatment. Barnes does not require that she eat a low-iodine diet. St. John's did. National Cancer Institute recommends the diet. Barnes says they have no evidence to support that being on the diet aides the treatment in any way. I think we'll at least try to do it as best we can. Boy is it hard to find milk that is dairy free and soy free. 1 kind. Coconut milk is all I could find. I bought it, so we're going to try it.
3. On Monday, March 21 she will get blood levels taken and she has to have the TSH of 30 to proceed with the test the next day.
4. Tuesday, March 22 she will go back to Siteman and drink the RAI. It's only 1 teaspoon of a clear, tasteless, odorless liquid that is drank through a straw followed by a glass of water. How does it work?? Thyroid cells collect iodine that enters the body in food. The thyroid gland uses iodine to make thyroid hormone. Thyroid cancer cells also collect iodine. Radioiodine is a type of iodine that is radioactive. The radiation kills both the normal thyroid cells and the thyroid cancer cells. The thyroid cells are not destroyed right away by the radiation. The radioiodine from the treatment will stay in these thyroid cells for 2 to 3 months and work to destroy the cells.
What are side effects of treatment? nausia, vomiting, swelling/pain of salivary glands, dry mouth, loss of taste, eye tearing, sore throat/hoarseness. Drink lots of fluid. No sour or tart liquids or foods.
5. RAI precautions for others -- The first 48 hours are the most important because she will be radioactive, which has the possibility of harming others, though there are no facts showing that it does. Most of the radioiodine not collected by the thyroid cells will be gone during the first day. It leaves the body mostly by urine. It is best she use her own bathroom for the first 2 days and up to 8 days. She has to flush the toilet twice. She has to shower twice a day washing from head to toe and have good hand washing. Sheets and clothes should be washed together after the first 48 hours. The same after the next 6 days. No sleeping or being close with any person or pet during the first 2 days, up to the 8 days. Must stay at least an arms length away from anyone for any 2-3 hour period. No long car rides.
6. She will start on the new Synthroid medication the day after treatment. She should start to feel better within a week after going back on thyroid medicine. They say children have an easier time being off the medication...so we'll see.
7. On Friday, March 25 she will have a total body thryroid scan. This will show any remaining cancer left in her body. We will have the scan and then go immediately to the office for the results and continuing treatment plan.
8. I'm going to keep her out of school for the full 8 days just to be cautious, but they said they tell people they can go back to work after the first 2 days.
9. Go back to school!!
1. Today they took blood to get TSH, thyroglobulin and calcium levels. To start the treatment she needs to have a TSH level of 30. After the treatment the goal is to have it at 0 - .01, which is lower than the average persons level of .03 - 5%. The lower the level, the lower likelyhood of cancer recurrence. They think the amount of Cytomel that she is on should get her to the 30 she needs to proceed with treatment.
2. We will stop her low-dose thyroid medicine on Monday, March 7. Side effects of being off thyroid medicine are: fatigue, weight gain, nausia. She will be off the medicine for the two weeks prior to the Radioactive Iodine treatment. Barnes does not require that she eat a low-iodine diet. St. John's did. National Cancer Institute recommends the diet. Barnes says they have no evidence to support that being on the diet aides the treatment in any way. I think we'll at least try to do it as best we can. Boy is it hard to find milk that is dairy free and soy free. 1 kind. Coconut milk is all I could find. I bought it, so we're going to try it.
3. On Monday, March 21 she will get blood levels taken and she has to have the TSH of 30 to proceed with the test the next day.
4. Tuesday, March 22 she will go back to Siteman and drink the RAI. It's only 1 teaspoon of a clear, tasteless, odorless liquid that is drank through a straw followed by a glass of water. How does it work?? Thyroid cells collect iodine that enters the body in food. The thyroid gland uses iodine to make thyroid hormone. Thyroid cancer cells also collect iodine. Radioiodine is a type of iodine that is radioactive. The radiation kills both the normal thyroid cells and the thyroid cancer cells. The thyroid cells are not destroyed right away by the radiation. The radioiodine from the treatment will stay in these thyroid cells for 2 to 3 months and work to destroy the cells.
What are side effects of treatment? nausia, vomiting, swelling/pain of salivary glands, dry mouth, loss of taste, eye tearing, sore throat/hoarseness. Drink lots of fluid. No sour or tart liquids or foods.
5. RAI precautions for others -- The first 48 hours are the most important because she will be radioactive, which has the possibility of harming others, though there are no facts showing that it does. Most of the radioiodine not collected by the thyroid cells will be gone during the first day. It leaves the body mostly by urine. It is best she use her own bathroom for the first 2 days and up to 8 days. She has to flush the toilet twice. She has to shower twice a day washing from head to toe and have good hand washing. Sheets and clothes should be washed together after the first 48 hours. The same after the next 6 days. No sleeping or being close with any person or pet during the first 2 days, up to the 8 days. Must stay at least an arms length away from anyone for any 2-3 hour period. No long car rides.
6. She will start on the new Synthroid medication the day after treatment. She should start to feel better within a week after going back on thyroid medicine. They say children have an easier time being off the medication...so we'll see.
7. On Friday, March 25 she will have a total body thryroid scan. This will show any remaining cancer left in her body. We will have the scan and then go immediately to the office for the results and continuing treatment plan.
8. I'm going to keep her out of school for the full 8 days just to be cautious, but they said they tell people they can go back to work after the first 2 days.
9. Go back to school!!