Complete the Cure

A close friend of mine recently sent me this link in an email. Her son Toby has Leukemia and this program helps raise funds for Pediatric Cancer Research. He was diagnosed at the tender age of 3 and is nearing the end of treatment. There is so little we can do to help besides offer our friendship and support, but this site has a great way to help fund new research.
September has been designated as Childhood Cancer Awareness Month. HopeKids is proud to announce they are commemorating this month by partnering with Children’s Cancer Research Fund in an interactive web campaign titled CompleteTheCure. The goal of the campaign is to bring awareness to the childhood cancer experience — the progress and the challenges. CompleteTheCure.com will feature six short video clips about childhood cancer. For each video clip viewed, a corporate sponsor will make a donation in support of pediatric cancer research. The more times the videos are viewed, the more funds that will be raised to help advance promising childhood cancer research. You can visit CompletetheCure.com, watch the videos and watch the money add up that will go to research. A couple of ideas to help spread the word: Post the website and information at bottom of every September journal entry so everyone visiting your blog site sees it and visits the CompleteTheCure.com. The more people that watch the videos the more awareness we can create about the importance of childhood cancer research and the more money we raise.

Thanks for your help every little bit helps.
Courtney

First Day of School

I seriously cannot believe that school has started. The summer was such a blur. Life just speeds up every passing year as the kids get older. Cai was very excited for 1st Grade. We went to back to school night and got to meet his teacher. She is sooo friendly and welcoming. It turns out she is one of Chris' clients. One that he always talks about. She has two Beagles, so whenever the topic of getting a dog comes up he has to comment about her GREAT dogs. The first day of School Cai had to wear his "My Band Rocks" T-shirt. Unlike Cole, Cai doesn't usually care about what he wears, with the exception of two shirts his "Caution Extremely Awesome" shirt and the band one. He was so excited to get a new backpack and shoes. He had to show everyone who came over his new Z straps for about a week. We were worried about his endurance for first grade (he was complaining that kindergarten was too long) but he has not complained once. I think the recess and lunch helps. On Thursday Cate and Cole and I went and had lunch with him at school. He was just beaming with pride that we were there. He was so sweet about it. He introduced me to all of his friends, showed Cole how to dump his tray, and had to give each of us a big hug before he went out for recess. He can be so sweet and loving sometimes.



Cole had a great time at Parent night for Billye Sue's preschool. He was very confident about everything. He too got to pick out a new backpack, which was way harder than picking one for Cai. Cole has major opinions on what he wants and doesn't want. I had a hard time talking him out of Speed racer, Lightning McQueen and Spiderman, but he finally went for a cute canvas camo one. He already has a character backpack he takes to Grandma's houses for sleepovers, but I was hoping we could find one without the cartoony look. I know I'm being superficial, sorry I really do try to let them go with their own look, and it is almost painful sometimes. I don't want to destroy their confidence and make them feel like they have to look like kids in Gap ads or something in preschool, but they just look so darn cute in those ads I can't help providing a little redirection towards good fashion when I can. Yeah that is superficial. Okay back to Coley. He made a major accomplishment the week before preschool when he began riding his bike with no training wheels. That boy is destined for a life on wheels, and it totally freaks me out. Nothing is more terrifying to me than off roading, motorcyles, and risky driving, and I can just see where his interests are forming in that direction. He is definitely going to double my gray hair. Cai just barely started riding his bike without training wheels the beginning of the summer. As with everything else Cole does it is way above his age. The first day of school Cole picked out his Hulk smash T-shirt and I bit my tongue even though I had just bought him some darling new clothes in Park City. Cole rode all the way to and from preschool his first day and was so excited to have made cookies for the whole family which he brought home in his backpack. He had each cookie assigned to a specific person and set them on the counter until Cai and Daddy got home. After Cai returned from school he saw them and polished them all off. Cole didn't realize until later and I just had to lie and tell him that Daddy had his too. It just would have broken his heart not to. Cole got a little mouse at parent night that he got to bring home and give it a name to take back to preschool. Then Billye Sue takes the kids pictures with their mouse and puts them all together in a book. He named his Softie. I'm not at all surprised Cole LOVES soft things. Billye Sue does several of these personalized books throughout the year and they are such fun keepsakes. Overall it was a great start to the new school year for all.

The Good the Bad and the Ugly

Summer is soooo busy! So let me catch you up on our last few weeks of craziness. We just finished swimming lessons last week and that always messes up our routine until it's over, but the kids love it. I did mom and me lessons with Cate. I don't know how much she got out of it, but I knew I would be hard pressed to keep her out of the water. She is pretty fearless and is a little fish. I think after a few more sessions she will definitely have some skills learned. Cole was very shy at first which is normal, and cried the first day, but his teacher handled it great. She didn't let him sit it out, and dealt with the crying until he was comfortable. We didn't have one issue after that. Cai started level two this year and was excited to be in the "big" pool. He is growing up so fast by the first day he had remembered where to meet his teacher, what she looked like and her name. By the end of mom and me I still couldn't remember out instructors name. What a smart boy.

Secondly we have been plotting with our contractors for the past few months and finally broke ground on our addition and garage last week. The kids nearly had a heart attack when they saw a giant trackhoe make it's way through the side yard and start breaking up the cement patio in the backyard. They were really just parking it for the night but I guess wanted to make sure the arm would clear the roof (the patio is covered). The real fun began the next morning and I could hardly keep the kids from the sliding glass door. I had planned to be gone because I thought Cate would totally freak out (she screams if a four wheeler drives by). After some initial nervousness though she started thinking it was very cool. By the time we got back from swimming lessons they had finished the basement and were working on digigng the footings for our neighbors shop. By the end of the day they had all three holes dug. They trucked out most of the dirt besides what we would need to backfill, but I was definitely naive in calculating the amount of dirt we would have left over. The excavator left most of the dirt on our back neighbors lot (they don't have a yard yet) which very frustrating. Although they were digging out a shop too and had some dirt of their own that was not the plan. I hope they forgive us, they just recently had their lot graded. Sorry Natalie! I promise we will put it back the way we found it! They had to bring a loader in as well to make some "roads" through the dirt so that the cement truck could even approach to pour the footings and walls. I just keep thinking about the extra room and hope it is all worth it in the end. They just poured the walls yesterday, and will be cutting the hole through our existing foundation to the basement sometime soon. It is amazing what people can do. I really didn't realize how skilled excavators were to dig so close to the existing walls and under the roof! So besides digging the hole a little too close for the wall form guys, and dumping the dirt in the wrong place, you couldn't help but admire the skill involved.

The good the bad and the ugly is definitely the theme of the last few weeks. I had a follow-up visit with my gastroenterologist this week to check on my U.C. He felt the medication was slowing things down but I am far from remission yet. He gave me some different medication to try, and when they do my colonoscopy in another three months he may give me some meds during the procedure to really knock it out. I have felt almost entirely back to normal however, but for some reason I did better in Europe than I have since we got home. I swear I think Americans are poisoning themselves. I think we are way too chemical happy or something. I don't know if it is the pasteurized dairy products, the preservatives, pesticides, antibiotics and chemicals in meat or what, but we are getting it wrong and it's literally making me sick. I really need to do some more research and start going organic. Well the doc had some good news too. He is from India and is a little difficult to understand, not to mention the fact that most of what he said last visit sounded like another language with all of the medical terminology. But after a much better colitis vocabulary this time I understood that the low-grade dysplasia is actually "indefinite". Which as you may recall from my last post good news. It means that the pathologist could not confirm or deny low-grade dysplasia. The doc said there is still something going on there that we need to watch carefully, but it is not as bad as I had feared. The bad news however is that he described my colitis as moderate last time which from my reasearch meant that about half the colon is diseased, although in reading the pathologists notes he called it "pan" ulcerative colitis which the doc says means my entire colon is infected. So definitely good and bad news. He also was willing to talk statistics this time, where last time he wouldn't, and said too much was unknown at that point. He said after 7-10 years of having the disease there is an increased risk of cancer, and after 15-20 years you have a 20-30% chance of getting cancer and it increases from there. I'm not sure about the odds when they find dysplasia, but fortunately they are watching closely.

Happy Birthday Coley!

4 at last! Cole has been trying to grow up too fast his whole darn life. He just can't wait to catch up to Cai. Well he also has a hard time making decisions for himself. He had mentioned he wanted a Ben 10 Birthday party, which was exactly what Cai had. So I really wanted to be sure that what he decided for his party was all him.

What we ended up with was Monster Trucks, for the cake at least.

He finally decided on balloon plates and napkins instead of Transformer ones, and then for some reason he just really wanted the yellow horse pinata, and swimming instead of birthday party games. So we had a mish-mosh Coley Birthday far removed from my typical theme parties. But what mattered was he made every decision. He had been begging for a four-wheeler first for Christmas and then for his Birthday for a pretty long time. His cousin Gavin has one so he really wanted a blue one just like Gavin's. There hasn't been a day go by since that he hasn't riden the thing. He has started to try his hand at four-wheeler stunts. He started riding one-handed, then standing up, then fish tailing, then standing with his opposite leg on the gas pedal his opposite hand on the handlebars all spread eagle while he was driving. That was also about the time mom decided to limit our

stunts for safety sake. He is so funny, and fearless, and just my cute, silly, sparkly eyed Coley. What a boy he is!

Holy crap that is long!

and full of crap literally (sorry couldn't pass that up, and yes I might still be in Junior High). My attempt at being thorough and reducing misconception on that last post just ended up being very tedious, and did I say long. Sorry in advance.

Ulcerative Colitis

I figured I had better do some damage control before the rumor mill gets people confused about my diagnosis. I just want to make sure that accurate information is out there. I don't want anyone freaking out or worrying too much, or what have you, so after a lot of thought I figured I had better get it out in the open a little. Anyone heard of Ulcerative Colitis? I hadn't until I found out I had it. And who knows maybe this could get people who have not had colonoscopies done and should a little incentive to GET TESTED! (This is where things may get a little yucky, so If you have a weak stomach or potty talk is just too much info. for you, you may want to stop reading about here.) I had some digestive problems for the last few years, and recently had diarrhea for 2 months with blood and mucus and no end in sight. I'm very slow to go to the doctor, but with our trip coming up, I knew I had to get that resolved. No one should be in Europe with diarrhea. Sorry this is so gross. But it is what it is. I don't want to skimp on the syptoms and risk someone experiencing anything similar any doubt in getting checked out ASAP. What finally convinced me was a girl on Oprah who came on the show to thank her for a show she did with Doctor Oz which convinced her to get checked out after having bloody diarrhea, and it turned out she had colon cancer.
Anyways, got the colonoscopy and they found a few polyps but they were not cancerous. After hearing that I thought I was in the clear, but after my follow up visit my world changed a whole lot. I learned that I had moderate Ulcerative Colitis (moderate means it has affected about half of my colon) with low grade dysplasia. Ulcerative Colitis is a chronic autoimmune disease where for some reason the body attacks it's own tissues. It causes inflammation and ulcers in the lining of the colon, causing it not to work correctly. The low-grade dysplasia means that the cells in the diseased areas are beginning to become abnormal it is not cancerous but can often become cancerous. So they have to watch things very carefully. My doctor was very concerned that dysplasia was present after only approx. 2 years (we're guessing) of having UC. They generally do not expect dysplasia until you have had UC for at least 8 yrs. So due to the speed at which the cells are becoming abnormal they will do another test in 6 mos. to see if it has progressed to high-grade dysplasia at which point they will likely remove my colon, or the portion that is affected. Fortunately, I guess the treatment of UC has changed dramatically in the past 5 years. It used to be that once any dysplasia is discovered at all they would remove your colon due to the cancer risk. Now they will just watch very carefully to stay ahead of abnormal cell development and wait until high-grade dysplasia is detected. It also used to mean that if your entire colon was removed you had to deal with a colostomy bag for the rest of your life. However now about 70% of people have had success with a new procedure that fashions a sort of mini colon out of your lower small intestine meaning after 2 months with a bag allowing things to heal you can have this procedure done, and just have watery bowel movements about 6 times a day. Unpleasant yes, but it definitely beats the bag! So I am very grateful that treatment options have improved so much recently, and I'm grateful that only half of my colon has been affected. The disease starts near the rectum and then progresses upward, there are not patches of the disease here and there. Also on a positive note UC can be cured by removal of the colon granted enough is taken and any areas of cancer have not spread to other organs. The only part that still freaks me out a bit is that my doctor said it is not feasible to test every area of the colon they can only take samples in a grid type pattern, there can still be areas of high-grade dysplasia or cancer in-between the areas they take samples from. He said he sampled and sampled until he was worn out from sampling during my colonoscopy and I remember waking up to a counter top full of 20-30 bottles that I didn't remember being there when I went under. From the research I have done people with UC have very good chances of survival and early cancer detection due to close observation. Typical symptoms of UC are abdominal cramps, headache, fatigue, joint pain, diarrhea, dehydration, excessive weight loss and malnutrition. Unfortunately I have not experienced excessive weight loss. It would be my luck not to have the only symptom that I would actually like to have. It has been pretty overwhelming dealing with such news at 32 (it is typically found between 50-70), but I am truly grateful that things were discovered relatively early (not early in life but early in the disease). They have me on about 4800 mg of Asacol (an anti-inflammatory medication) a day, and a slew of supplements, and I am feeling pretty much back to normal. So I have about 4 mos. before my next colonoscopy to check the dysplasia. Then I will continue to have annual colonoscopies. We are starting to get used to the idea more everyday. It doesn't mean I don't have my moments of WHY ME, but things could always be worse. I was given some pretty incredible promises through one of the most amazing answers to prayer I have ever experienced. I was having a particularly low couple of days and spending way too much time on the computer researching the disease (I think the Lord made my computer get a virus just to make me chill out a bit, there's some scary info out there meant for doctors eyes only)(am I using parenthesis enough by the way? Sorry I'll stop). After a lot of prayer, I kept getting the impression repeatedly that I really needed to read my scriptures. So I finally did and after randomly opening the book and glancing through 2 or 3 verses I just could not believe what I was reading. I have never had the scriptures seem as though what I was reading was written so precisely just for me in a place I never would have expected. In Alma 24:14 it reads: "And the great God has had mercy on us, and made these things known unto us that we might not perish; yea, and he has made thing things known unto us beforehand, because he loveth our souls as well as he loveth our children; therefore, in his mercy he doth visit us by his angels, that the plan of salvation might be made known unto us as well as unto future generations." I just knew that those words were coming directly from the mouth of the Lord to me, and that I will be okay, this was not going to end my life, and take me away from my children. My biggest concern was the thought of not being able to see my kids grow up, or maybe see my grandkids. I hate feeling so down sometimes because I know there are people out there who are way more entitled to tears than I am right now, and they are so strong in the face of things so much scarier! It is just inspiring. Hayley, Travis, Tara, you know who you are. So for now it is mostly the uncertainty of how fast the dysplasia is progressing that freaks me out from time to time. Symptoms are pretty much in check. I do however hold out the hope that low-grade dysplasia can be very difficult to diagnose during an active phase of the disease and it takes very experienced pathologist to determine indefinite to low-grade or high grade dysplasia. Many pathologists differ in their diagnosis of the samples, so maybe I am indefinite! I never wished to be considered indefinite before, and negative would be even better. So in your prayers remember to pray that I will be negative(sorry just trying to find some bit of humor, and double sorry for the parenthesis again)! I am the eternal optimist.

Summer Fun!

We were so excited to have Aunt Candice up here from Colorado to play with us. We played in the pool and the slip'n'slide at our house and then continued the water fun at Cherry Hill on Saturday. The kids had a blast. The hardest part was keeping track of all of those kids, who wanted to be a million different directions at once. It was so fun to visit, play, and just have a great time! We just hated seeing the Eborns go home again.

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