Here in Houston

So much has happened since we arrived in Houston at noon on Tuesday. Unfortunately I've been feeling very poorly, slept very little and we haven't been able to connect to wifi until today - so I'm just now updating everyone. My apologies. Wings of Hope decided the weather forecast was too iffy for bad weather, so they bought us tickets on Delta to fly to Houston. Megan loved the flights. She was so excited to sit next to the window and watch everything. Delta changed our seats both flights and moved us up front and we had our own row each flight. Neither of us got sick at all. Worked perfectly. As soon as we stepped off the plane in Houston I called the Ronald McDonald House to find out that we DID have a room. Oh I was so excited - and Megan thought I was a dork. We had a chauffeured driver and town car pick us up at the airport and take us to the Ronald McDonald House. It was so nice. Everything was paid for, even the tip. Thanks to Keri and her sister for arranging that for us! We got to the House and settled in. It's a beautiful three story brick house, with 50 family rooms, and large 3-story atrium community areas. There are 4 full stocked kitchen areas with 2 stoves in each and then a large breakfast bar kitchen area also. They have a large little kid play area, a very cool teen room and then outside play area with BBQ pavilion. Each family has a chore to do each day. Ours is easy. Make sure the pavilion trash cans get emptied. They provide all the major breakfast food you could want in the community area, a community refrigerator and freezer with all the common items needed to cook. Then dinner is usually provided by an organization or company most nights. Weekend big breakfasts are provided too. All have been awesome. There is no dinner on Saturday night so Megan and I are going to use a gift card at Olive Garden, which is just down the road. Wednesday took us to the hospital before 9 am. There are shuttles from the House almost every hour. First we had to fill out some major paper work in the children's clinic. Then she got blood drawn. Next was an ultrasound of her neck. The tech actually told us what she saw during the test. She was measuring anything that looked suspicious. She said some was probably cancer, some just areas affected by the surgery. Two months post-op is still pretty fresh inside her neck. Then we went to the nuclear medicine area for her small dose of the radioactive iodine. They had to make sure her blood tests were ok before they could give her the dose. Finally they knew she wasn't pregnant (duh) and that her thyroid levels were above 30, which is the thyroid level that she has to have to get the dose. She was 330! With being off the thyroid medicine for almost 4 weeks and on the low-iodine diet the whole time, her levels were awesome. What that means is that her body is craving iodine very badly and all the cells are starving for it, so when they give her the iodine, the cells soke it up rapidly. So this small dose was the I123 dose, just a teaser dose for the initial thyroid body scan she would get on Thursday. It was pretty freaky getting the dose. It was a capsule inside a bottle, inside a bottle, inside another bottle. Megan had to put on gloves, neither the nurse or her toched the capsule and she swalled it, followed by a whole glass of water. Then she was all fine and able to leave for the day. So next we caught the shuttle to the grocery store and picked up some things she could eat and some cough medicine for me. Thursday we were able to sleep in a little and took a cab to the hospital for her 11 am thyroid full body scan. They did a 10 minute neck scan and then a 30 minute full body scan. Again, this tech was very helpful and pointed out some thyroid tissue left in her neck from the surgery and some points that looked like cancer. Next we went to the cafeteria to eat lunch. She was so upset that she still had to be on the diet and it was hard to find something she wanted that she was able to eat. Poor thing was crying in line in the cafeteria. Finally I convinced a grill guy to find her a plain chicken breast and they grilled it especially for her and then they had plain fries with no seasoning or salt - so she was very happy then! She can't eat for 3 hours before her treatment and for 1 hour after the treatment - so this was the last meal for awhile. Next we went and sat in some recliners while she read a book she got in the kids clinic, and I read a grant for work and answered emails. Phone reception is in and out in the hospital with all the machinery in there. The MD Anderson complex is amazing. Picture the entire Barnes/Children's complex on Kingshighway - that is the size of MDA with almost 20,000 employees -- all for treating cancer. Plus, there are like 7 other hospitals all in this medical complex area of downtown. Just amazing! We saw a heart being rushed in by a surgeon in a cooler to the Heart Hospital. That was kinda cool. So next was the big meeting with the endocrinologist. First we met with the fellow. We went through all the history from the beginning and every symptom she's been having lately. Next she came back with the dr. He was super nice. He asked some questions to clarify things from the surgeon and oncologist's notes. He said her scar looked great, like someone who really knew what he was doing. I said all he mainly does is thyroid surgeries, but he was an adult doctor. He said that's what we wanted because pediatric surgeons don't do enough of them to really be the best. He agreed with everything that was done during the surgery and found her cerebral thrombosis and Horner's syndrome facinating. He even sent in a photographer to take a picture of Megan's eye for educational purposes. Teaching what some of the side-effects of the surgery can be. He'd never heard of thrombosis happening from surgery either, and he says they do tons of thyroids at MDA. I said the Nantional Cancer Intitute didn't either. So then he looked at the scan and said the ultrasound was more helpful than the scan at this point. He could see some cancer on the left side of her neck, the side that wasn't operated on. He said it was very reasonable not to have gone in there because there was too much risk of more damage and they didn't want to completely damage her voice forever. Plus, there was thyroid tissue left in the neck that needs to be killed. And some cancer still on the right side. The full body scan was hard to really read, because the large thyroid tissue was shadowing the scan, making it hard to tell if the areas in her lungs are cancer or not. He said he just kept looking at it trying to decide if this little white dot was cancer in the lung or not. He wasn't definite. SO, with all that in mind, and her being the size of an adult, he decided to give her a large adult dose of the treatment. Kids normally get somewhere between 30 and 100. Adults normally get 100, 150 for advanced cases and 200 for severe cases. He decided to give Megan 150. He doesn't believe in giving multiple doses of iodine to kids. He likes to give one big dose to kill as much as possible. If more treatment is needed, he uses a pill form of other medication. He wouldn't say more about it until we know if she needs more. But, either way it won't be intravenius chemo. So he said she could get the port out as soon as we want it out. She is thrilled! More good news. He said she isn't going to die from this. There was a study done by the Mayo clinic of 215 kids under 21 with Papilary Thyroid cancer, and after 30 years post-treatment, only 2 had died. He said Megan wouldn't be one of those. He said he has a 4 yr old patient who has it metasticized in his brain and his bone and he's worried he could be one of those 2 that won't make it 30 years. So - we are thrilled!! Long term, he will mostly want continued ultrasounds of her neck and most everything can be done in St. Louis and we can communicate via phone and email. He said to get the dose right after this, stay in the hospital until her radioactivity level is below a 7, and then come back on Monday for another full body thyroid scan. Only this time, he is ordering it with SPECT-CT which will show a more detailed look and difinitive answer about each spot on the scan. After the scan we will then go back up to see him in the clinic, and make a game plan going forward. Next, on to the hospital room for her stay in the lead-lined room. They kept saying it takes awhile to get the room ready for her. Now I know why. We got up there and everything in the room was covered in either a suran wrap type stuff or sheets of diaper like material. The entire bed, chair, handles, inside and out of sink, mirror, toilet seat and bowl and handle, the floor had walkways lined, the window sill, phone -- everything! She had disposable pillows and all her meal plates and such are all throw away. They had a spot lined on the floor and up the wall for her to put her food trays. Every bit of food had to be eaten, or cut into tiny pieces and flushed down the toilet. Her trays would then sit there until she left and it would all be burnt. Her hosptial gown, socks, underwear and even her book would have to be thrown away also. She could keep nothing in her room and not shower. She had to flush 3 times after each bathroom use and wash hands well. She had cable with movie channels and her book to keep her company. I could only see her 10 minutes of every hour and had to stand away from her and behind a lead lined movable wall. I felt like crud anyway, so I said my good bye's after she took the treatment and left for the evening. The treatment was most interesting as well. The nuclear nurse finally came up to the room around 5:30. She explained that she had just gotten the dose from the nuclear pharmacist not 10 minutes before and she ran to get it and then ran it up to Megan. The I131 is made in Australia at one of their nuclear plants, and it was flown in just the day before, and then dosed by the pharmacist just after the doctor ordered it after our meeting with him. She said it is very hard to get an exact dose, but anyting within 10 is considered ok. Hers was 144.6. It came up in a lined plastic container. Inside was a large, metal capsule like thing that had a belt like weaved thing over it to hold it. Kind of looked like a karate belt around it. Then she opened the lid and took out a vile that contained the pill. She gave Megan gloves and poured it out into her hand. She then drank it. The nurse waited 4 minutes and then used a meter that looked like a large old square flash light, connected to a yard stick to read Megan's radioactivity. Megan had to hold the stick to her neck, then her chest and then her belly button. She did each 3 times. Her highest reading was a 21. Normal is 15 - 35. She has to read below a 7 to leave. They think she will be ready to go home Friday afternoon, so only 1 day in-patient. Then, as soon as she leaves - no more diet! She's so excited. So to get to a 7, she has to drink lots of water and pee lots to get it out of her system. As of Friday morning, she was a 9. Hopefully at 3 pm when they read her again, she'll be able to shower, put on normal clothes and leave. Then, party for Megan! I plan to let her pick whatever she wants to do this weekend, rent a car and go out. I'm thinking beach, zoo, science museum, dinner...whatever she's up for. She says she's feeling fine so far and she finished her book. Hopefully all is well for the weekend. More info on Monday...

Time to be Tired

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. :(

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!!!!!

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. :)

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.

• 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.

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...

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!!