Spinal Tap - IV Meds

Megan had a third spinal tap/lumbar puncture (LP) last Friday, May 20. It went pretty smoothly. We knew the nurses, and of course the same registration lady, so it was all pretty easy. They gave her a full bag of fluid before the LP, which helps prevent too much headache from taking the fluid out of her head. The GI Dr. came in and visited with us because nothing had helped with the stomach issues. She was very nice. She decided to put her on a 24 hour IV pump for Zophran to hopefully get her nausea under control and also IV Pepcid to help with the stomach pain. While she was under for the LP, the nurse accessed her port so she wouldn't have to deal with having it done. She is such a baby about her port and just hates it, so this was the best answer. And, the nurse did it with no problems and got it in on the first try and Megan slept through the whole thing.

Dr. Hanson did the LP again and this time her pressure was just a tad higher than 3 weeks ago. So he took her from 43 down to 14 this time. Because he took off so much fluid, he gave her another whole bag of fluid after the LP, which he hadn't done the last 2 times. They were hoping this would really help with her head pain and pressure.

So we went home and the Home Health nurse came right in the middle of our Girl Scout meeting. It took us over an hour to go through everything and learn how to use the equipment and medicines. So Gary and Lynn started grilling the burgers and dogs while we hooked Megan up to her new appendage. Then we finished with our Girl Scout celebration of finishing our silver award work and having our parents meeting to plan everything for the silver award project.

So, later Friday night Megan's port started leaking the fluid from the IV. I tried taping it down more, but it just kept leaking. So the nurse cam out on Saturday morning and had to re-access her port. Not a pretty sight! Megan was very upset and just had a big fit. But, after an hour's worth of Emla cream, she finally let the nurse put in the needle - and she hardly felt it - and she got it in on the first try. I call that good!! The best news of all though is that the IV Zophran is working and keeping her from having any nausea, which was literally driving her nuts. Thank God! The pepcid seems to finally be working some too and keeping the stomach pain from being quite so bad. Yippee!!

Endoscopy - May 13 - 17

On Friday, May 13 - Yes, Friday the 13th - we went back into St. John's for the upper endoscopy. First thing, the registration lady knew us, so we flew right through that part. Then we walked back into the treatment area and headed to our room and saw that we had the same nurse we had for the last lumbar puncture and one day when inpatient last week. Too funny. And she is the nurse whose cousins live in my old house that I grew up in on Milentz. They are the people who bought it from us in 1986 and they still live there. Small world. So it was nice chatting with her again and made things very comfortable for Megan.

Megan didn't like that she forgot to use her Emla numbing cream for the IV and they didn't have time to let her put it on since it takes 30 minutes to work. So she crabbed and fussed about it, but she was ok. They took her back just 20 minutes late and before I could even hardly do anything, the doctor was back with pictures of her esophagus and stomach. Her esophagus looked great and the tissue of the stomach looked great, but her stomach was lined with her food from last night's dinner. Food should be out of our stomach after just 4 hours and hers wasn't. So the doctor said Megan's stomach has stopped contracting sending her food on through her system, which sometimes happens when kids are having chemo or taking a lot of meds. She suggested Megan try taking eurythromyocin for two weeks, 20 minutes before each meal, 4 times a day. If this medicine doesn't work, then she will treat it like an irritable bowel syndrome. They also did a biopsy while they were in there, which is standard.

So Megan started taking the medicine on Friday night, but as of Monday, her stomach pain and nausea weren't any better and she's even puked a couple of times. So I called the doctor on Monday and heard back on Tuesday. She said that she can't do anything else until the biopsy results are back. She said to take Mylanta up to 6 times a day, 20 minutes before each time she eats. So, I guess we'll see what happens.

The nurse practitioner from MD Anderson called Monday. They got her results from her thyroid blood tests that they did on Friday while she had in an IV getting the endoscopy done. Her one level was good but her other level was just a tad too high, so they are having her taking an extra 1/2 a pill a week. The medicine helps kill off the cancer and helps it from reoccurring, so they want the numbers to be exactly where they want them. We also talked about her next visit. I'd like to go down there the second week of August, not Oct. 3 as we are currently scheduled. (A MD Anderson daily schedule just came in the mail with our appointment times all ready for us.) The endocrinologist had said end of summer or 6 months, so I thought I'd ask. I just hate to get more into school again and really upset her 8th grade year, especially if she has to have surgery while she's down there to remove another tumor that's on the left side of her neck. The nurse practitioner said that would probably be fine since they like to see patients 3 to 6 months post surgery and 6 months would be the end of July. He's on vacation this week and she's on vacation next week, so it will be a few weeks before she gets back to me, but she said that it seemed likely to be ok.

I called the neurologist today to see when he would like her to have the third lumbar puncture done. His office called back and said they are arranging it with the oncologist to do it again. So we wait for another phone call with a date and time. Until then, at least the head pain only happens when she lifts anything too heavy, but her stomach pain is fairly constant, but worse at some times than others. She is trying not taking the flexerel for the muscle pains, which the diomox (pill for pseudo tumor) gives her. We'll see if we need a refill. Still taking Vitamin D once a week. Now she has a cold that I gave her, so she's taking cold medicine too. Stuffy nose is no fun. I've been fairly miserable for over a week. I think we're both ready to feel better soon.

May 9 - 12 - Neurosurgeon

Megan had been taking the Protonax, but it sure didn't seem to help any. So on Tuesday I called the GI doctor back and they scheduled an upper endoscopy for Friday, May 13.

Megan had been taking another round of Prednisone and she just finished her two week taper. (Which means she starts off on a high dose and gradually decreases over 2 weeks.) This round of Prednisone seemed to work pretty well. By the time she was out of the hospital, her head pain was virutally gone. But, the neurologist said it was probably time to talk to a surgeon. I was hoping we could see one when Megan was inpatient again last week, but they don't have one on staff. I can't believe St. John's doesn't have a pediatric neurosurgeon. Weird. So, I called the neurosurgeon that the neurologist recommended on Monday to see about an appointment and left a message. On Wednesday, their office at Children's Hospital called me back to schedule an appointment and they happened to have a cancellation the next day, so I grabbed it. Megan and I both were a little nervous about seeing a neurosurgeon and, of course, the possibility of more surgery.

We got to Children's on Thursday, and the first thing we saw was a dalmation dog with a clown party hat and glasses and a big red clown nose on her. She was just the sweetest dog ever. Megan was petting her and I took their picture together. A very sweet way to start the day was meeting the Children's Hospital dog. It actually lives at the hospital!

But then we sat in the doctor's office for 2 hours waiting. They put us in the room and said he's be right in. 90 minutes later I went and asked if something had happened. That's when she let me know that he'd had an emergency and was running behind. And you couldn't have let us know???? Megan was in total pain the whole time and then was getting hungary. His nurse practitioner came in and asked questions about her pseudo tumor, cerebral vein thrombosis and cancer. She looked in her eyes and was still able to see all the pressure in her brain. She was very nice. Then the doctor came in. He seemed younger than I would have thought he'd be, but was very direct and nice (and apologetic for being soooo late). He said it is very common for a pseudo tumor to occur from a jugular being tied off. The doctors we saw at MD Anderson and St. John's didn't think so, but of course they weren't neurosurgeons, so who knows. He asked questions about her last two lumbar puncture's (spinal tap), her pressures, head pain, etc. She hadn't really gotten any relief from the LP's, which is concerning, but he said Prednisone isn't a long term solution, of course. Then he said he would talk to our neurologist at St. John's and together they would come up with a plan. He also said he wanted the notes from the opthomologist that Megan has been seeing. She hasn't seen him in a month, but not much has changed. So, I called his office and got that arranged.

3 Days in the Hospital

Megan has continued to have very bad stomach pains and nausea. The neurologist suggested she see a GI (Gastroenterologist). I couldn't get in contact with the office after numerous phone calls over two days time, so I decided we would just go to the ER since it should expedite things. After 7 hours in the ER receiving fluids, IV meds, and xrays, they decided to send us up to a room. The next day we sat around waiting and finally the GI doctor came by and ordered a gall bladder test. As soon as we figured out the test, scheduling and such, the nurse found out that she couldn't have the test because they had just given her pain medicine and she couldn't have the test with food or pain meds, which she had had both. So basically we just hung around the hospital all day until the next morning she could have the test. It was a 90 minute nuclear test to see if the gall bladder is working. Funny thing was that it was the same kind of scan machine that did her thyroid scan at MD Anderson. She just had to lay still for the 90 minutes while they did an initial scan and then injected some kind of nuclear medicine in her IV and then did a long scan.

Kelsey got to go down to the play room and work on a mother's day project the art therapy program had scheduled. She was as happy as ever getting to decorate 4 cookies and then make a very cool cookie bouquet. She was very sweet and got all the materials together for Megan to make one in her room once she came back from her test. Together they worked on Megan's cookies and we hung out, and had lunch. Megan was glad to finally be well enough to go so the pantry for the first time - where they have free drinks and snacks. She was able to get her own slushee. :) She also saw the Ronald McDonald House room finally. They have two lovely living room areas, kitchen with snacks and food, showers and computer area. Very nice and free. We also saw many of the same nurses, techs, transporters, house keeping and chaplain that we made friends with during our last visits. A couple of nurses came in just to say hi to Megan and we had some of the same ones helping us again. It almost felt comfortable, not like being in a dreaded place, which is nice.

Later the nurse came in and told us the test came back fine so we could go home. They had been giving her a new medicine Protonax to hopefully help with her stomach pain, so they said to try the new medicine for a few days and if she isn't feeling better, to call the doctor and she would do an upper endoscopy, which is a camera going down her throat to look at her esophagus and stomach. So, we went home. Of course once we got home, the medicine she prescribed wasn't covered by insurance. 7 phone calls later back and forth between Walgreens and the doctor, we got it figured out. Walgreens didn't have the new medicine, but didn't bother to tell me that. So then they had to call it to another 24-hour Walgreens which of course was 15 minutes away - but I went out at midnight to get the medicine for her. FUN. But, glad to be home.

Ups and Downs

Sometimes it feels like we're on a teeter totter. I remember being a kid going to the drive in movies and always so glad to play up at front on the playground. You know, the old metal slides, merry go round and wooden teeter totter. I think I enjoyed the up and down back then, but not so much now as an adult.

Megan has had some good days lately, but then some really horrible days too. I keep hoping she's going to go back to school. She told a reporter from the Suburban Journal who wrote an article about Megan and Kelsey both, that she wanted to go back to school and be normal again and I just want that to happen for her so bad. It's been 4 months since she's been out of school. That's longer than a summer break, and we're almost upon the summer break.

She was finally able to have an MRI two weeks post-treatment to see what is going on in her brain. When they are in the middle of the test and they call the doctor to ask them to order two more kinds of detailed images based on what they saw, and then come out to ask my permission, you know it isn't good. Two days later we went to see the neurologist at St. John's. Good news and bad news. Good news is that the blood clots are all gone!! That's huge. That means she can come off the blood thinner cumadin that was giving her many nose bleeds a day and making her get weekly blood draws. Bad news is that the white shadowing on her brain didn't go away and so he gave her a definite diagnosis of Tuberous Sclerosis, which is what Kelsey was diagnosed with in December. (In December Kelsey had an MRI that found a small brain tumor, as well as the same white matter, tubors, that we already knew she had. On Jan. 4 they found small tumors in both of her kidneys also.)

The Dr. then also said that she most likely has a pseudo brain tumor. That is when the brain thinks it has a tumor, but it really doesn't. So the pressure keeps building with the increase in spinal fluid. So he recommended that she have a lumbar puncture, spinal tap, after being off the cumidan for a few days. He called the oncologist who agreed and so last Monday the oncologist did a second LP. (She had the first one while she was in-patient in February.) This time her spinal fluid level was a 42. A normal level is 10-12 and a pseudo tumor levels begins at 32. So he took off 1/2 her spinal fluid bringing her down to 21 cc's - so she still has twice as much as she is supposed to have.

So it was 5 days later and she was still feeling awful. I called the oncologist on Friday and he said she's in a vicious cycle and there really isn't anything else he can do for her. He thought maybe the dilaudid narcotic is making her so nauseous and have such bad stomach pains. So we tried staying off the dilaudid for the weekend and stick with 4 ibuprofin and 2 Aleve at each dosage. She seemed fairly ok on Friday afternoon and Saturday morning for the fundraiser at O'Charley's, (which was a blast!) but by Saturday afternoon she was bedridden again feeling awful. Her head pounds, ears hear machinery sounds in her head, eyes hurt and vision is blurry. Then she gets nauseous, has terrible stomach pains and is dizzy. So back to Dilaudid.

Our original plan in all this was to go back to school on Monday. So she had her friend Shelby spend the night with her on Sunday night and I took them to school in the morning and Shelby helped her inside with all her books that she'd had at home. She did great! She visited the nurse, did some reading work in the guidance office during first hour, went to her second hour and by then was feeling so horribly that they called me and the school counselor took her home. And that is where she has remained the last 2 days.

I called the neurologist yesterday afternoon and they decided to put her back on prednisone for two weeks to see if it will bring down the pressure in her brain. It took 7 phone calls to get it all figured out between having to get permission from the oncologist who said he wanted the neurologist to call it in. Then it never got to Walgreens. Then call back to see when it would be called in. Then Walgreens said they had it but the directions didn't make sense because it was a complicated tapering from high dose down to small dose over 14 days. So back and forth we went. UGH. I worked at home this morning waiting to get the medicine before I had meetings, but it never came through by 11:15. UGH. So she got it after I picked up Kelsey from after school homework help. Now tonight after taking her first 2 pills she says her face feels like it's all hard on the inside and it's all tingly. I called the exchange and the neurologist called me back. He is just so nice. He said that the tingly and hardness aren't anything to worry about. Heck, she's been tingly for months from being on the Diomox, but the hardness is weird. He said if the LP would have worked, she would have been better after a day. Sure wish I'd have know that. He said to give the prednisone 48 hours and if she isn't better by Thursday morning to call him and he will get us in to see a neurosurgeon. That's the next step. A possible shunt being placed in her brain to keep the spinal fluid from building up in her brain. He says, but if the LP didn't work, he's not sure a shunt would be the answer. But it might be time for a consult with the neurosurgeons.

Great. This is what we have been trying to avoid since we first found the brain issues. But, whatever it takes for her to feel better. It's been almost 4 months of constant pain. It has to come to an end. Both of us are just weakened by it all. Megan has kept such good spirits considering everything she's been through. But she's ready to feel better. She sent me an email one night at 11:45 when she just couldn't sleep because of the pain, and I was bugging her about going back to school. It just made me cry. "I hate that I never feel good and that I have no way of feeling good. You just don't get it that I really do not feel good and I feel like crap. I keep feeling like I am going to barf and I am so nauseous and I hate all this." So, if she doesn't go back to school this year, so be it. And if it's brain surgery she needs, then by golly we're there.

We ARE back :)

I guess I haven't really said much of how it all ended in Houston. Yes, we have been back for two weeks now. I can't believe it's already been that long. We never did get to do anything in Houston. Megan just felt sooo tired that all she saw was the inside of our room at the Ronald McDonald House. She didn't really get the chance, or really want to, get to know some of the people who were staying there with us. I have to say that so many of them touched me greatly. I know that doesn't say much about the treatment, but it affected me so much to hear so many stories of what families are dealing with. Mom's and dad's who fly back and forth taking turns staying in Houston. Grandma there with her teenage daughter who's baby is so ill. The African woman who's baby was born at 1 pound 10 oz with heart and lung issues. The teenage girl in a wheelchair waiting for lungs who spent Christmas at RMDH. Amazing people doing amazing things for their children. My friend Kelley said to me that I'm such a good mom. All I could think was how could I do anything else but get the best for my daughter, and wouldn't everyone do the same thing? I watched "My Sisters Keeper" this weekend. I highly recommend it. A story about a family living through luekemia. I cried and cried. So many parts I could relate to. So many I don't want to relate to. Yes, I've really been processing and internalizing so much of the emotional parts of cancer...it's been hard.

We did actually fly home with Wings of Hope in a small 4 passenger airplane. I was SO nervous. Megan was excited. We flew out of a small private airport Ellington Field where the Air Force Base is in Houston. The take offs and landings were rocky, but with wearing the prescription patch, it worked great. Once we got up around 8,000 ft, it was really smooth flying. The one time when we were staying low going out of Houston, a wind blew so hard it really put us going sideways and I was SO scared we were going to flip upside down. It was freaky! We stopped in Hot Springs, Arkansas, which is so beautiful. We had just been there over a year ago with our good friends, Rhonda, June, Kelton and Kaylor, who live in Arkansas so it was kind of fun to be there - so beautiful with the hills and forests. We filled up 30 gallons in each engine and headed back home. We got to fly over 6 Flags which was pretty neat. Megan layed down on the very comfy stretcher the whole time and rested fairly well. The people at Wings of Hope were awesome. The two pilots were volunteers - flying on their own time to help others. They were so nice to us. We got back and Aunt Marie and Kelsey were waiting in Chesterfield to take us home. Their coordinator and other staff showed them all around their hanger and let Kelsey get in a pilot's seat. I took their pictures with the plane and the girls both got Build-A-Bears and an art set. So very sweet. I of course was kind of ready to get home. :)

We came back home to the house having a first coat of paint and not really liking the color once it was on the house. So it was a whole process of new color, convincing painter to do more coats, test painting new colors, etc.

Then to get the new trampoline up for Kelsey's birthday party sleepover, two Girl Scout April Showers days, interviews with the Suburban Journal, trying to work, the floors a wreck from the dogs, muddy paws all over my carpets, dining room chairs falling apart, a third tree in the backyard dead, the deck falling apart, the flower beds need to be redone, the grass is nothing but weeds, Megan wants a desk for her room and new clothes and shoes and everything else she can find on Craig's list, doctor's visits, Megan feeling like crud, more barfing, vision coming and going between fuzzy and wavy, not wanting the tutors to come, afraid to go back to school, head pain, stomach pain, nausea, nose bleeds....ugh.

Yes, I'm tired and overwhelmed. But hopefully before too long we will have a period of somewhat normalcy. Do I know what that is?? :)

What's Next

I haven't felt like updating the blog. It just felt hard to do. Everything has just been weighing on me and I've been trying to process it all. Plus, we've been trying to get back to a somewhat normal life again. That hasn't really happened all that much, but I've been trying. On Monday, April 5 Megan had another thyroid scan again, but this time they did four different kinds. Just the neck, full body, side views of the full body and then a short one I had to leave the room for. We then had a long break so we ate lunch and sat in chairs looking outside at the rain for awhile. Then we met with the endocrinologist again. He showed us the scans and explained what he saw. He said they looked good. We could see the tumors in her lungs, but they didn't light up orange as being thyroid material. He still doesn't know what they are. He says we will watch them, see if they grow and maybe next time we visit have them biopsied. The neck still showed plenty of leftover thyroid tissue from the surgery (you could really see it light up on the scan), some leftover at the very top of her neck probably from when she was forming in the uterus that got stuck as it was lowering into the neck, and some tumor on the left side of her neck that we'll have to watch. He said it was all ok for now because, in his words, no surgeon in there right mind would want to go back in there now. There is just too much risk of more damage. He thought the surgeon did a very nice job and really got everything he could possibly get without damaging more than he already had to damage to get the worst of it out. Unfortunately the thyroid tissue is what produces the cancer, and hers seems to grow fast, which is why they want it all gone. He said we should come back at the end of summer or in 6 months and again at a year and every 6 months for awhile after that too. He said she needs to go home and heal from all the surgery and get all the blood clots in her brain taken care of too. He likes to have ultrasounds done of the neck to watch her neck and the cancer. He finds that you can see more cancer and tumors with the ultrasounds than from the thyroid scans. They each have their purpose, but he likes the ultrasounds best because the scans can miss cancer while the other sees it. He said at the next visits we will look at having more scans, biopsies and possibly more surgery. He wants everything to be done at MD Anderson and I said that was fine, we'd be there whenever he said to be there. He was really very nice. He said we can communicate via email or phone and not to hesitate to contact him if we have any questions or concerns. I'd say we have a lot of the worst behind us for awhile, but still plenty more to deal with in the future as well.

Sleep, Sleep, Sleep

I went to see Megan on Friday afternoon around 2 pm. I could only see her for 30 minutes of an entire day so I waited until it would almost be time to leave. It was perfect timing. The nuclear medicine tech guy who had done her body scan came up and read her radioactivity as a 6.8 so she was able to leave. Another nurse came up, got information about our living situation for the next week, left to prepare a personalized plan for her continued radioactivity, and then came back with instructions. She can be around other people, she just has to stay an arms length away and no prolonged exposure; also no babies on her lap and stay away from pregnant women and small children for any long period of time. She still has to flush the toilet 3 times and clean the sink and shower well after use. Nothing too bad we can't handle. She hadn't slept well in the hospital and was fairly crabby. She did eat dinner that was at the House and then went up to the room and watched tv and fell asleep around 10 pm. She then slept for 15 hours, not waking up until after 1 pm on Satuday afternoon. Her throat and jaw were hurting from the treatment. The iodine settles in the salivary glands and can cause pain. She doesn't seem to be naucious at all though, which is good. She just overall is still feeling cruddy. Pretty weak, pains off and on and just very tired. She finally ate the breakfast plate I had made her in the morning around 6. I offered to take her out or order food but she just wanted something soft to eat here in the room. She did manage to eat every last bit of it all though, even 3 Samoa Girl Scout cookies I was able to find downstairs. She settled in to watch movies and some TV on the laptop in bed and that was the extent of her day. I slept most of the afternoon myself which felt good after racing non-stop in St. Louis preparing for this trip and then being sick. It's felt rather nice to just lay around reading a book and napping. I got up Sunday morning and made us breakfast, but as of 4 pm in the afternoon, she still hasn't woken up. There is a dinner being served at 6, so hopefully she'll want to take a shower and go downstairs to eat. Who knows. I'm hoping she will so I can strip her bed and do some laundry of sheets, towels and our clothes. I'm supposed to wash her linens seperately after a couple of days...so I would like to get this done for her today hopefully. Poor thing is just so tired. Being off the thyroid medicine makes her tired, but she was able to go on a full normal dose of new thyroid medicine friday evening. Hopefully she'll start feeling better within a week or two. That's all for now. Tomorrow is the big day...so we shall see! Love to all!

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!!

Feb. 24-26

I am happy to report that Megan is starting to feel much better. :0) She is eating and drinking normally, though she has lost a total of 40 pounds now. I'm wondering if I'm going to have to buy new pants for her again...She had gained 20 pounds this fall (and now we know why) - and I had to buy her all new pants -- but cancer is not a fun way to lose the weight! She is also watching tv now, playing on the internet and able to read small amounts at a time, so no books yet. Her vision still isn't the greatest, but a bit better. She has started to walk slowly with the walker around the second floor of the house. She took a visit to the first floor down the steps and she said it was too hard getting back up to do it often. At least she tried! She did take a fall in the shower too, but just some minor bumps to be had. She didn't want to have me come in to get her the face soap...silly girl. :) Her head pain is getting better, just tolerable pain right now, which is awesome. She's still taking the Dilaudid for pain during the day, but none at night now. If only the medicine's side effects would go away, she'd be very happy. :)

We had a set-back on Thursday, which made me pretty upset. The oncologist called to say that the pediatric endocrinologist at Cardinal Glennon decided she didn't want to take Megan's case because it's just too rare and complex. He tried the adult dr's, but they wouldn't take her either, so unfortunately she can't get her cancer care at St. John's. He said he'd try to find her someone in the Washington University system.

Friday morning I got a call from a nurse who works for the two doctors who see thyroid cancer patients in the radiation department at Siteman Cancer Center at Barnes. She was very helpful, providing plenty of useful information about their Radioactive Iodine (RAI) treatment program. They do see everyone, ages 5 - 97. They handle the entire care, no separate endocrinologist is usually required. Their program does seem to be less restrictive than St. John's program. They do the entire treatment on an out-patient basis as opposed to staying in the hopital 2 days like St. John's was going to require. They only do one thyroid scan 5 days after the treatment, as opposed to one 2 days before and 1 week after at St. John's. St. John's also wanted her to be completely off any thyroid medicine for 6 weeks and Barnes wants her on medicine to a thyroid level of 30 before she goes off the medicine for 2 weeks prior to treatment. Of course, she isn't on the medicine they want her on. So, we go to see the new doctor on Tuesday morning. More info to follow...

So Friday afternoon I spent calling different departments getting medical records and scans on CD and took them to Siteman. The only part I'm sort of upset about, is that Siteman isn't in a "kid-friendly" area - it was kind of depressing when I was there. Nothing compared to going into the Cardinals Care Kids Cancer Center at St. John's. I'm sure Children's Cancer Center (an extention of Siteman) is awesome too, but they don't treat her cancer there. So boring adult cancer center it is. But, the only thing that matters is that they have incredible cancer care. Period.

Of course the bills have started coming in and they are fun to go through and see how much they bill for a service and how much insurance allows for each of them. And someone with out insurance would pay the whole amount?? unimaginable. The bad news on Wednesday night was that I realized they were denying the claims starting with the second surgery because of "pre-existing condition". Didn't seem right to me since we've been with United HealthCare for 3 years. I called and they said it did look wrong but I'd have to call back on Thursday. So I called and talked to the review department. Turns out our policies group number changed on Jan. 1 so it flagged us all for pre-existing conditions. They unflagged us and she started to put through the denied claims. Whew! I had huge anxiety knots in my stomach from that one...that's all I would need on top of deductibles and copays...sheesh.

Feb. 22

Today begins a halfway normal life again.

Kelsey came home on Sunday night after spending Thursday and Friday at Tricia and Shannon's house and then the weekend with dad and spending the previous two weeks at Aunt Marie's house - she's able to be back home with us and sleeping in her own bed again. I think she's had fun hanging with Aunt Marie, cousin Beth, Miss Deanna, Carol, Grandma, Dad and the Conrads, but it was good to be home again. :) Thanks to everyone who has helped...been a crazy month for sure!

Megan layed in bed all morning but really felt pretty good. No major issues. She watched 30 minutes of TV while I went to get Kelsey's medicine. She actually wanted 2 small quesadillas for breakfast...hey as long as it's food, it works for me! Yesterday all she ate was 2 of those frozen qusadillas and a cookie.

We went to the cancer center today to get a check-up and get blood taken for tests. Megan is still taking these darn steroids to lower the swelling in her brain, which ultimately makes so many things feel better, but it also has a lot of side affects. We had a list of questions for the doctor. Of course he added 2 more medications to the 13 she already has... She has a rash on her neck and behind her ear into her head - from steroids he says. Her legs and hips and butt hurt - he says steroids can cause muscle and bone pain. Her stomach hurts terribly - still from the acid build up from the steroids. She's also having a hard time sleeping from them too. I gave her sleeping pills and benedryl before bed the last 2 nights and she still only slept 3 hours last night and the night before. No fun. She just lays there in the dark. I asked her what she thinks about all the time as she's been laying in bed in the dark and quiet for the last 3 weeks and she said mostly camp. Thinking about all the cool things she's done over the years, what units she's been in, and what she'll do this year. She's signed up for one week at Camp Rainbow, a free camp for kids with Cancer, 2 weeks at Girl Scout horsback riding camp at Cedarledge with Shelby and then 1 week at Girl Scout Let's Get Cooking camp at Tuckaho with Shelby. She wants to do a Wolf camp with Shelby too. Not able to camp with Katie again this year. :(

She's had tingling in her feet for most of her hospital stay. Now it's tingly in her left leg, hands and face. Oncologist isn't sure why...he wanted us to see the neurologist next week but now he wants us to call on Thursday and if it's not better wants us to get in to see him this week. Another wait and see....

We did get an appointment to see the endocrinologist on Friday. There really isn't any other pediatric dr. who deals with kids with thyroid cancer in St. Louis. She will do all the follow-up on tracking her thyroid levels, medications and such in the future. I guess I'm going to schedule the radioactive iodine treatment tomorrow. The oncologist doesn't want to wait - she needs to have it done on the 6-week post-surgery schedule, but we had to get in to see this new dr. That means she starts the low-iodine diet within the next week. I've been reading online about it - not much fun. All foods need to be 5 g of iodine or less per serving. (Salt is 400 g for 1 tsp). No dairy, eggs, commercial bread, anything from the sea, only 5 oz of fresh meat (no turkey) a day, 4 servings of very few carbohydrates, no iodized salt...so many weird restrictions. All pure and plain, nothing from restaurants. They do have a cookbook online so I guess I'll be baking bread, making homemade waffles and such. I think I'll be making a trip down to Valenti's meat market. :)

After the dr's visit she felt pretty decent. She watched a couple hours of tv tonight, looked on the computer and Keri brought her 3 new teen magazines (along with a fabulous dinner) and she was super excited. She actually ate the dinner that was brought to us tonight and wanted more mashed potatoes at 10 pm and then a cookie from last nights dinner and the pie from tonight too! I guess since she's lost 35 pounds I won't mind the little extra dessert intake! :0)

Feb. 21

Saturday morning Megan woke up and felt like she was ready to head home and see her doggies, so we finally made it home on Saturday evening around 5:30. She did pretty good on the car ride home. She wore sunglasses and luckily it was a cloudy day and getting dark by the time we got home. She was so excited to see the dogs. Of course I wasn't, because they were a muddy mess from all the melting snow so I had to give them both a bath before I would let them loose in the house. And after 2 weeks of sleeping on that couch, my back wasn't much in the mood for leaning over the tub to give 2 dogs a bath, not to mention cleaning the kitchen floor that was a muddy mess. :)

Megan is starting to feel a bit better for parts of each day more and more. She can have a light on for part of the day and watch maybe 30 minutes of TV once or twice a day. She's enjoyed looking at her magazines getting caught up on all the teen stars gossip and looking at the prom dresses. :0)

So I've started our own pharmacy out of my bedroom. There are seriously tooo many drugs in one hosehold. She has 13 medications equaling taking 24 pills, 2 shots, 2 liquids, 2 puffs and 2 sprays each day. We got a fancy pill holder for 4 times a day and a dry erase board we hung on the bathroom door with a medicine schedule written on it. I freaked when I saw the bill for the shots - the insurance would only pay for 15 days at a time, so 2 copays of $35 each, but each presciption cost $1,630. Good golly!

A big thanks to our Girl Scout leader friends who have begun bringing us dinners. Plus lots of paper plates and cups are a huge help to cut down on dishes. Not very earth wise, but probably just easier for now. :)

We head to the oncologist tomorrow. She has a rash on her neck - and her face, hands and left leg are tingly - so we need to ask about those and the pharmacy never got her prevacid prescription right and her stomach is hurting very often, they say from lots of extra acid from meds. Tums are kind of working right now but need to get the prevacid I guess.

My room is all set up with all her gifts, flowers, stuffed animals and lots of cards. It's definitely kid friendly - and close to the bathroom. :) Pepper is happy to be sleeping with Megan again and I do believe it's very good therapy for Megan too. :0)-

Feb. 18

We slept in again this morning till 11 am. This dark and cold room does make it nice for sleeping. The physical therapist came in and tried to take her for a walk but she was in too much pain and nauscious so she waited until she got all of her medicines and came back after lunch. She helped her get up with a walker and took a short walk to some stairs. She showed her the best way to go up the stairs and down - and also told me what to do once we're home. By the time she got back to bed she was crying in pain again and very nauscious so the nurse gave her a second nausia medicine. She then slept the rest of the afternoon until 6:30. She even slept through the oncologists visit.

We decided to let Megan stay another night in the hospital, no reason to rush her out and she really didn't want to go home today while feeling so poorly. Her ears have really hurt her today too and says it's harder to hear. So the dr. said to have her get up and take a shower as soon as she is feeling better. She needs to be up as much as possible to get her body a little more back to normal. I have to make sure she has a good pair of sunglasses for the ride home because of the light. Keeping things dark really does help her.

Megan chatted with Kelsey, Dad and aunt Marie this evening for a bit and then took another small nap. She seemed to be feeling better so she asked to take a shower. The nurse offered her to go to the tub room and take a nice bath. She was super excited! There's even a TV in there and she thought she might turn it on. That would make the first time she turned on the TV in these 12 days in the hospital. :0) She says when she's done she's ready to take all of her medicines and give her some Benedryl to knock her out.

I guess we'll see what tomorrow brings...

Feb. 16-17

Wednesday morning we were up and a'tem to get to the nuclear medicine dr. We had to go by wheelchair for this trip and Megan wasn't very excited. By the end of it she was crying in pain to get back to her bed. :( We chatted with the dr. about the radioactive iodine treatment that he will give her for the thyroid cancer. In a week she will stop taking her thyroid medine and start eating a low-iodine diet for the two weeks prior to getting the treatment. So, she is barely eating as it is, and now she will have to have a very restricted diet and manage to get 70 grams of protein each day...should be an interesting 2 weeks. No dairy, fish, pasta, breads, potatoes, beef, salt, etc...ugh. Luckily the dietician came in today and gave us examples of good sources of protein and the right amounts. If only half of them weren't dairy and meat. :( Looks like these Resource drinks by Boost might work but need to check with the dr. to make sure.

Today Megan is wondering if there can be anything else rare about her - she even has the rare O+ blood type. She's just amazed by it all.

The speech pathologist came by and taught Megan to chew her food while having her head turned to the left. This will help keep the food away from the right side of the neck where the trauma from the surgery happened. It actually helped. The dietician said to start slow and work up to more foods, but to try to get as much protein as possible. So she has to give up the gatorade and go for the chocolate milk. I said there are worse things than that... :)

This afternoon Carol went with Ms. Megan over to the eye dr. so he could test her for all kinds of things. It was not a fun appointment. Lots of light. No laying. Delays getting her in the office. Delays with transportation getting her back to her room. By the time she got back she was just crying in pain and needed to laying silent in darkness. Poor baby... Not sure of the results yet...

The oncologist came by and said we should start thinking about getting home. I have to learn how to give Megan her shots in the stomach twice a day, so I'm going to attempt that tonight...and she isn't excited about having me do it...silly girl doesn't trust her mom with a needle. :0)

Physical therapy is going to come tomorrow to help her get up and be more steady on her feet. She's been laying in a bed for so many weeks that she has a hard time walking - afraid her legs are going to buckle under her. Dr. is thinking maybe a walker might help.

Dr. said he can get a nurse to come to the house to take her blood for the labs they still need run very regularly. They have to measure the levels of the blood thinner shots to make sure it's ok. He is going to get all her medicines ready here at the hospital so we don't have to run and get them once we're home. That's a help.

Taking her off the TPN/feeding tube made her blood sugars go back down to normal today. It combined with the steroids were causing her to have 300 sugar levels.

Oncologist gave her the green light to go to Girl Scout camp this summer. He said she'll still be on the blood thinners in June, so she has to be careful, be he thinks she should be able to go. She is sooo excited!