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...