Sunday, May 22, 2011

February 13, 2007

The team pathologist as the HCI feels there is a possibility that the tumor has developed a malignancy component, and since desmoids never do that - it may be something else. They are going to do some aggressive cytology testing. The biopsy is scheduled for Friday and will be ultrasound guided at the Univ. of Utah hospital. My main concern is that it will continue to bleed out after the procedure as it did after the first biopsy. B~ and I will be travelling to St. George and Las Vegas for a couples' getaway before all the new changes come in to play. On the way home with Ty - it was just him & me- he tried to throw up several times. I felt so badly for him, but there was nothing I could do for him besides talk him thorough it and crank the air.

The girls were great at math today. S~ and Nicole had their dental cleanings and each had a cavity. We're all eating entirely too much sugar.

Last night, there was a shooting at Trolley Square. Six people are dead (including the gunman) and several more are injured. The only thing they know if the gunman us that he was 18 years old and a Bosnian refugee with a Muslim name. It is believed that it was just a random act of violence and not a terrorist activity.

February 12, 2007

I have to write ore about Tyler's Hunstman Cancer Inst. appointment today, but suffice it to say they want to have a second biopsy performed and change his course of chemo. They also drew blood.

Spielberg wet skiing today with O's.

Sunday, February 11, 2007

A storm has moved in-a hesitant rain that falls against rain and roof, then waits for a moment before falling again. It is a snuggle under the covers with a book kind of day. Just now, I heard a strange popping sound like that of bacon exploding on a hot skillet. I assumed it was the fat in the roast beef I have going in the crock pot. Suddenly it became a steady rhythmic sound, as though someone were hanging pictures in the attic above the kitchen. I went to investigate. It wasn't the crock pot and I couldn't quite figure out where it was coming from. It sounded like it was on the roof. I leaned over and looked out the kitchen window. A woodpecker was busy rapping his beak against the house just above the kitchen window.  smacked my hand hard against the glass - the woodpecker probably had the scare of his life and he flew off. All his excitement stirred up the birds in our willow trees and they flew up, circled in our backyard, and scattered to various neighboring rooftops.

We invited my parents over for dinner. We had roast, carrots, potatoes, salad, corn, and apple passion mango juice. The kids disappeared to the basement for a game of flashlight tag while my mom and I did dishes and made up some hot fudge pudding cake. Doreen stayed up and visited for awhile. It was a nice afternoon.

Ellie did not recognize my dad. I think his beard scared her a bit. She gradually warmed up to him.

February 10, 2007

Tonight was our class movie night. We watched "Mr. Smith Goes to Washington" and had pizza. The boys had an interesting observation about hypocrisy and doing what you know is right versus giving up.

The weather has really warmed up lately. The girls played outside almost the whole day. They practiced doing front flips on the tramp. Nicole said, "I love being outside and feeling the wind on my face." Tonight, while I was reading from Farmer Boy to the girls she commented that being an apprentice doesn't make sense because you would be away form home for six years and when you went back your parents would be completely different.

Tonight I heard Spielberg tap-dancing in the shower. The funny thing is I remember doing that myself at his very age. Of course, it was my mom's fault that the idea ever occurred to me - she was the one who put me in clogging class. I started practicing (Shuffle, ball, change) during a shower. I just couldn't help myself, it was such a cool sound and sensation. That's why when I hear my kids trying it out themselves (and it is very annoying to listen to), I just have to smile to myself and remember the fun I had. Michelle, Nicole, and Spielberg have all joined the tub-tap dancing ranks.

Ellie is now saying "up and is understanding so much of what we say. She absolutely loves being outside and cries when we carry her in. She is fascinated with toothbrushes and shows no partiality to whose goes in her mouth. We discovered that she loves Fuji apples. If I do not safety pin the zippers on her pajamas she will begin to undress herself.

Spielberg wondered aloud last night if he joined magnets to batteries...would it make a circuit? Today he created a Lego stop-gap animation film. It was very good. He was very clever in making it appear that buildings were being exploded and characters chopped or split apart (all Legos, of course). He is very clever, and I love the ideas he has.

February 9, 2007

Miss Ellie discovered how to undo her diaper tapes and then peed on the carpet. She came walking over to me all squat-legged and saying "I potty". She is also saying "aneh" for again. Her latest favorite activity is to dump everything out of the baking bin and then sit in it as if it were a boat.

February 8, 2007

Chemo again. We tried going at 2:30 to see if it would be faster. We got done in 3 hours instead of four. Next week, we are going at 2. It seems they are better at getting to you when they want to go home too.

Michelle, Nicole, Spielberg and B~ went tubing at SH. MH bought several extra tickets and shared them. They had a great time.

We spoke with Spielberg about leisure time. Leisure is what you have when you've completed your obligations. He was very frustrated because it means no electronics until he's caught up. The his teacher, Mrs. K, put the kibosh on it and said he could only make up a few assignments.

Can't think, too tired.

February 7, 2007

Nicole was able to do several front walk-overs very well. They are learning a dance for their recital and she's very worried that she won't be able to memorize the steps.

Spielberg is going to be spending lots of time catching up on schoolwork. When we were in crisis mode with my cancer and Ty's tumor, he let a lot of things slide. I know he was worried but he didn't do several assignments or lost them, and because of that he's failing. He is such a bright kid, it's unfortunate that he's letting his teacher get a different impression.

Michelle added the extra box spring to her bed. She's now queen of the bedroom, she's up so high. So as a consolation, she gave Nicole the down quilt.

B~ rearranged the weight room and we will start doing workouts together soon. My body could definitely benefit from it.

Ellie had a playmate today and was very concerned for her toys. It was difficult for her to see her shopping cart being played with.

February 6, 2007

I was struggling with what I want for Tyler and what I might think the Lord wants. I know it's okay for me to ask for him to be healed and for him to be comforted and strengthened through this trial. The it is up to the Lord how it turns out and I'll be okay with it. I look forward to going to the temple and having that peace and stillness in my spirit again.

I had the sharp pain in my collarbone again. It was so sharp I had to stop what I was doing and push against it. I haven't had this much pain since last January. There is a niggling in the back of my mind that wonders if the cancer is in my bones. I'm going to snuff that niggling thought and not borrow trouble.

I told my class about Irene Gut today. I wish I could climb inside their minds and hear what they're thinking.

The doctor asked me to come in for a calcium test to see where my levels are. I am hoping to have one night of good sleep. I haven't had one in so long. I know I should stop complaining - I really am blessed in so many ways. My spirit has been refreshed tonight and for that I am happy beyond words.

February 5, 2007

Last night was very restless for me. I have developed a tingling sensation in my lips - wow! does that ever keep a person awake. It is sometimes even in the tip of my tongue. I wonder if it is due to being so hyperthyroid that I'm having a calcium deficiency or something. Also my throat is feeling strange, not quite scratchy like I'm getting sick, and not quite sore - just sort of tingly.

I've been reading past entries from over 10 years ago until now and I've found that I seem to have a running problem with kindness, or rather anger instead of kindness. I probably should have never married and instead become some sort of spokesperson for a cause who knits afghans when she isn't harping on something or someone. I guess Mondays in winter are good days for pity parties.

Thursday, May 5, 2011

Sunday, February 4, 2007

Bad, bad food day - even though I fasted for Tyler. After 4:30, I had 4 pancakes, 1 egg, juice, 1 sausage, 4 pieces of bacon, 2 brownies (small), 1 scoop of ice cream, and 3 no-bake cookies.

Church was very nice, it was the first time I watched Russell pass the bread and water. It's amazing to me that he has already reached this milestone.

We read from the family journals about the funny things the kids did and said. It made me realize how important it is to record those moments and that i need to practice my handwriting even more.

We made brownies and took them over to my mom and dad's to share, then we took the rest down to Grandma B's and visited with them (my cousin Randy was there too).

We had a family tickle on our bed and everyone ganged up on B~ and then Spielberg. It was fun. Afterwards Nicole asked B~ "Is it sweaty in here?" When he said yes she turned on the fan.

While we were driving to my mom's i asked the kids what they wanted to be/do when they're older.

Nicole: First of all I want to take care of my kids when I have them. (and after further prodding from Spielberg and Michelle) she said she wanted to be an artist. She later added that she wants to work at a place like where Spielberg gets his haircut.

Michelle: Teacher, dentist helper

Spielberg: I'm going to own my own business. I want to be CEO of a company similar to Walt Disney I'm going to be a director and run a theme park based on my comics, write comics, make movies, etc. He also has a back-up plan in case he changes his mind.

February 3, 2007

There are some days that I am hardly aware of what exists outside the walls of my home and then there are those that shock you back into life. We watched the movie "Freedom Writers" about Los Angeles High School students after the Rodney King riots and a teacher named Erin Gruwell who made a difference. Many of her students were the first in their families to graduate from high school. She taught them to see their real worth and not to accept the message the world was giving them. It was very inspirational. I realize how much I take my personal safety and a loving family for granted. Many people never have either of those.

Nicole is really struggling now - there aren't many girls her age to play with and Michelle is always off with B~ or C~. I feel the girls need more time together, but I don't want to force it. I was going to put them in different rooms, but it won't bring them closer.

Tyler had a pretty good day, we were able to distract him when he was feeling nauseous. He has been moaning though. More of his hair is falling out, but he still has gorgeous hair. He's developed two more mouth sores and his gums aren't looking so good.

Spielberg and B~ (friend) and W~ tried to have a board game party, which turned into watching old family videos and seeing Spielberg being so darling. I love when he tried to get into a magazine picture of trains by pushing the top of his head onto the page. He kept saying "get in there".

Ellie was downstairs with Jess and tripped, falling onto the corner of the dollhouse. It left her a lovely bruise and a couple of scratches. I told her, "Let's go take a shower." She began trying to take off her pajamas and when she did - she took them to the laundry hamper. Hopefully this is an indicator that she will grow up neat and tidy. Maybe she inherited the neat gene from her dad. It's certain no one else did.

(What follows next is a huge, rambling analysis of The Virginian and the parts that bug me, especially the chapter about the hen Em'ly. I know it is meant to be a parable, but I am sure my interpretation was wrong).

February 2, 2007

Ellie discovered what poop is. She had her jammies off and I was changing Tyler. She reached in the back of her diaper and I heard Nicole scream, "Mom, Ellie's poopy and it's all over her hand." I ran and grabbed her, but by then it was on her face, torso, arms and wow did it ever smell! I put her in the tub, used a bunch of wipes and soaped her into a full lather. I can't say she enjoyed it though.

Nicole and K~ were in the upstairs closet. There's a lam in there since the builder forgot to put in a light fixture. K~ was reaching to turn it off and it fell down and broke the fluorescent bulb. I handled it okay, but I wish I would've done it better and said, I'll bet it was scary when the lamp fell - let's get the vacuum and clean it up.

Michelle had her dance thing and I think she found out how difficult it can be to coordinate a dance routine.

Spielberg had his science fair and did a nice job of demoing his project. He and B~ (friend) tried doing a stop-gap film together, but it wasn't B~'s idea of a good time and they argued. B~ thought it would funny to film his foot instead - that didn't go over well with Spielberg. They ended up playing Woolly Bully instead.

Ty's PT and teacher came today. E~ was sick. We got out the side layer and he didn't seem to mind being on his side too much. He already looks like he isn't feeling well and his hair is starting to thin faster.  I did a lot of insurance calls today. I spent 2-3 hours on the phone and still have 3 bills to straighten out.

Sunday, May 1, 2011

February 1, 2007

What a very long day. Chemo days always are. The y decided to do Ty's CT scan today. We had some good news - they've decided it's only slightly bigger this time. The necrosis (old blood) in the middle of the tumor hasn't gotten any bigger though. It may be that the chemo is working. The barium made Tyler really sick- he tried to vomit every time we put it in his gtube. They also said that although they are not symmetrical his kidneys look to be the same size. That's a good thing. My mom went this time. We always have interesting conversations. I wonder if it's hard to watch your daughter and her son go through medical trials? Do you still have the same wish to exchange places and bear her burden or his? Or, do you think, "Been there, done that and good wishes" while thinking so glad it isn't me? I have a feeling that ache a mother has when her child is going through a tough time never stops coming, although part of you know it needs to be.

Food today:
3 egg whites omelet & 1/2 grapefruit
2 slices whole wheat toast, 2 T strawberry jam
1 string cheese
10 potato chips and 7 Doritos ( we were at the hospital for 7 hours and the cafeteria was closed)
1 60 calorie yogurt
2 servings spaghetti & 1/2 slice whole wheat bread
lots of water and one no-bake cookie

Maybe a better food day tomorrow, maybe some weight loss?

I held Ty so long today that my femur was aching all the way home. But I have no right to complain - my hair isn't falling out, I don't have constant nausea, and I have perfect blood pressure - not to mention the abilities  I have to run, skip, walk, jump, dance crazy and silly, read what I want, speak what I want, go where I want, play the piano, sew, knit write, open doors, play games, have friends, drink and eat what I like (except at Olive Garden) and a whole lot of other things - I'd run out of room if I write them all. Praise the Lord - chemo might work!

January 31, 2007

Ellie started something new - she backs into the pantry and tries to pull the door closed as much as she can. Then she starts to giggle. Then I say, "Has anyone seen Ellie? Where's Ellie?" More laughter from the pantry and then she finally peeks out from behind the door and says "Boo!" or something that sounds like it but isn't quite, "There she is!" I think we played it ten or more times. She has also begun exploring the other cupboards - stacking and nesting various items and then putting them back.

Nicole had gymnastics and did a beautiful front walk-over. Her back walkover is almost there. She is trying to build up her tummy muscles for a longer headstand/handstand.

Michelle decided on the bright colors from a quilt I made a couple years ago-my 50s retro kitchen quilt. It reminds my mom of her mother's aprons. She is deciding what size her squares will be and how many she needs as well as designing it.

Spielberg went to Knights of Freedom and showed his Lego animation film. He finished assembling his Science Fair display board and will give a short presentation in class tomorrow. I'm really very proud of him for seeing it through. Although I wish it wasn't always the 11th hour when he decides to do so.

Hooray? Maybe Ty's tumor didn't grow again this week. I guess we will find out next Thursday what's going on in there. He was still very nauseous today and is starting to get a lot of air in his stomach. He is also seeming to startle for no apparent reason. He did the sign that we are trying to get him to use for when he wants us to hold him - so to reinforce it, I did it with him and said, "Tyler, you want me to hold you," and then I held him on my lap on the couch and gently rocked him. I was rewarded with big smiles.

Wow! I think I have now written for more consecutive days than I have before - I've also practiced piano daily for 3 weeks now.

January 30, 2007

Yet another new pen - I think I love medium points, they somehow feel more substantial - as if you  are saying things and not just whispering them.

We had a class today and I shared two examples of people who have had a hand in passing legislation - one of whom was a 12 year old blind boy. He got a law passed that provides braille ballots to the blind so that their votes would be private. We also talked about the State of the Union address and the President's call for openness and honesty with earmarks. (these are appropriations that get added onto bills via committee meeting reports). They learned how a bill becomes a law. They also tried their hand at Parliamentary Procedure. These kids are great and I really enjoy them!

Spielberg continued working on his Science Fair project - last minute, unfortunately.

M~ is sick and will be unable to come tomorrow and be with Ty while I run Spielberg and Nicole around. I think Wendy will come through. I don't dare leave him with Michelle because he has been so nauseous this time. (4x today)

Michelle and Nicole worked on making recipe cards today. I will try to find recipe binders for them to begin their own cookbooks with. Michelle has come up with an idea for a dance/exercise fun group for kids 3-8 I tell you, she was born teaching. I love to see her excitement for working with kids. At bedtime, she asked if we could work on making a new blanket for her (she threw up on hers and it was so ragged that I had to throw it out).

I put shoes on Ellie and she immediately went to the door and waved "bye-bye". She kept doing it so after class I tool her shopping with me. Next time I'll just take her for a walk - shopping is too hard with a baby.

I said goodbye to sugar today - it was hard and will probably get harder before too long.

January 29, 2007

Michelle researched cows, chicken, wheat, corn - etc today. It was amazing. I wrote a paper about it. The difference was that she was excited about having a farm for our next house and so she did all of the work for it and found out what she could.

Nicole wants to make snowflakes tomorrow and drop them from the top of the stair railing. She is always wanting to make things and hang them up to beautify the house.

Spielberg worked on his Science Fair project. It involves levers and how to balance a heavy and light object.

B~ worked late tonight, but came home for Family Night and then went back to work.

Ellie's nose is still runny all the time, but she lets you wipe it if you say, "Noses." She says beebee for binky, ba-ba for bottle, ea for eat, dy-dy for Tyler and dada for dad, mom for mom, and nye-nye for night-night.

I am so tired of being stressed-out and having no desire to do anything. Only the kids keep me from hiding in bed all day. At the same time I feel this way, I also wish I could grab myself by the shoulders and give me a good shaking or something. I seriously feel like I have mud for brains sometimes. I can understand autistic behavior - when my world doesn't make sense I feel an overwhelming desire to bang my head against something. I never do it, but I wonder if it might be helpful or at least somewhat satisfying.

Back to real life - I did finish How Children Learn and have started to write a paper on it. I long to write well, not just the bits of reporting on what the kids did today - the real heart and soul meaty kind of writing that brings you into the moment and makes it really live. Sigh...

Sunday, January 28, 2007

I said goodbye to Melanie today with a promise for a future visit to St. George - hopefully in February over President's Day weekend to go to the Parade of Homes. I really enjoyed her visit and am planning menus for healthy eating - something has got to change and it will only come if I start it.

I can't remember if I mentioned Ellie's word for banana - "namanamas"-she asks for it first thing when I change her diaper in the morning. She has begun pulling hair when frustrated, hers and ours. She seems fearless except when it comes to other people. Zippers are a new fascination for her, as well as stacking or nesting anything she finds, usually cups in the kitchen. Aunt M~ is trying to get her to start matching items. I know she is well-intentioned, but I don't feel good about it. At this point her play should be play and not testing or pleasing an adult. She is very bright and will have no problems picking those things up when she is ready to ad when it means something to her. Maybe I'll suggest just following Ellie's lead and doing Primary songs if she is interested.

Michelle snuggled with me during quiet time. Nicole has been devising "hanger traps" - when you open the door a whole chain of interlinked hangers goes crashing to the ground. It just sends her into fits of laughter. Michelle also wrote a cute note to me today. I believe I am going to design a family mailbox and see if they like the idea and use it.

I read more to Spielberg (and girls) from The Alliance. It is getting really interesting now and presents several ethical dilemmas and opportunities for discussion. Spielberg keeps asking questions and guessing what he thinks will happen. I love to see his mind at work. He designed several two-dimensional characters out of perler beads. They are plastic beads you place on a shape that has points sticking up (imagine a bed of nails). The you melt them together by ironing them together under a piece of parchment paper. He has come up with a clever way to make them stand stand and be able to hold things. Michelle accidentally knocked one over before it had fused together. I was impressed with how Spielberg handled it. He didn't show anger at all and they worked together to pick them up. He has a wonderful heart.

I cuddled with Tyler today too. He tried throwing up three times today.His tumor is quite squishy today. I tried the trick of putting baby powder in his hair so it would look less greasy (thank you teenage hormones). It worked.

I'm getting very tired, but I still have so much to do! I remember a quote from my high school seminary wall: "Days are like suitcases, some people can pack twice as much into theirs."

One of the boys in my class wrote a paper on "Would you rather have a leader with character or one with knowledge?" His paper was very insightful and he concluded that "Where you have faith, you also have knowledge." Very astute for a 14 yr old.

January 27, 2007

I have a small fan club. There are two people in it, maybe 2 1/2. Ellie has suddenly decided that she must be where I am. She loves running her fingers in my hair - especially at the nape of my neck with her right hand. Those same fingers tug mercilessly on her own short hair whenever she is upset or nervous. She has developed a fascination with the family pictures in the hall. She pulls me by the hand into the hall and then grunts to be picked up. She points at the pictures and says "Who's at?" She will look at different pictures, but never says anything else.

Person #2 in my fan club would have to be Tyler, although I am sure he would prefer to have me snuggle with him more and to leave his chemo-chapped lips alone (enough with the Vaseline, mom!). He had a rough day and was very nauseous. He threw up three or four times. It's a blessing that he has a gastrostomy button. It really helps to alleviate the pressure.

Nicole is not a fan of me today. According to her, I'm a picky, picky person because I want her to shower the day before church and change her underwear. i interrupted her while she was making important repairs to a craft project. Then, she accidentally caught my throat with her shoulder when I hugged her goodnight. She had a little meltdown over her covers being very messy every single morning when she wakes up. "It's so unfair!" she screamed at me. "Just look at Michelle, her bed is never like mine, why does it do that?" (As though the bed is messing itself up every night).

Michelle isn't particularly fond of me today either. I happen to think it's a good idea to put things where they go rather than letting them hit the floor wherever you may be. She often leaves a trail of items and it is easy to see where she has been. C~ was with us all afternoon while her mom took their dog to the vet. He will probably have to be put down. That's a difficult thing, a pet becomes part of the family.

Spielberg might be the 1/2 of the 2 1/2. He had a good time at the BYU game today. It was the "whiteout" against Air Force. Everyone wore white and the stadium was nearly sold out. He and his friend B~ made up and rode to the game together, afterwards he and B~ (dad) went to Macey's for ice cream. I read to him from The Alliance - he is starting to get into it. It's a little difficult for him to follow.

B~ is definitely not a fan of mine today. I bumped a curb last night when I was out with Melanie and the hub cap rolled off the passenger tire. I only made 6 right turns with curbs, but I couldn't remember where it happened. I feel terrible. He got his hair cut and looks very nice. He never seems to age except for his salt and pepper hair.

And me - I don't belong to my fan club today either. Maybe tomorrow, maybe Monday. Today, no. I just need to let a little air out of my stress balloon. I have somehow become stuck in a pattern of being exasperated, frustrated, worn out, snappish, eating poorly, paying attention to things that don't really matter while neglecting those that do. To quote Susan P, "Stop the insanity!" A good primal scream might be in order here. I realize that I am patient with others only to the extent that I am patient with myself. How do I be more accepting of me and open my heart to others? I hope my kids feel that I love and not that I judge them, B~ too. I doubt it.

Can I have a do-over? And keep the perspective I'm gaining? I'd like to do it better, the whole darn thing - LIFE!

January 26, 2007

The Huntsman Cancer Center finally called. They wanted to see Tyler on Feb. 5th, but when I told them he would be having another scan on the 8th, they decided to see him on the 12th. He told me Dr. Chen is only seeing Tyler for a consultation and will not treat him since she is not a pediatric oncologist.

Nicole commented while I was talking to her -  "Mom, you say "slightly" a lot." Hmmm, I hadn't noticed that.

I have been trying a new herbal supplement that is supposed to enhance your mood It seems to make me feel extra edgy. I'm hoping it will balance out soon or I'll have to quit taking it.

Today Spielberg was deflecting a shot B~ took while they were playing basketball in his (B~'s) room and the ball accidentally hit his neon  BYU sign  and it broke. B~ took off and hid somewhere in his house. Spielberg went and found him and told him he didn't have to be so immature about it and that he shouldn't blame him since B~ was the one who took the shot. That didn't go over very well with B~. Spielberg felt very badly and came home upset. He told me and started crying. I should have been understanding, instead I took B~'s part in it. Spielberg called him to apologize, but he wouldn't come to the phone. I felt so bad for Spielberg. I didn't show it very well and because of that Spielberg acted out at me and we had an awful thing going. When will I remember that "Love is the answer"? I am so frustrated by the human-ness of me. I want so much to be better, to be who I know I am, but I keep sabotaging my efforts.

Michelle spent the day with her friend B~ and went to the mall. They ate breakfast at her house, then played at our house and finally had enough of each other and took a break.

B~ had a long, hard day at work. Meetings and reports - I gather. He was a sweetheart and stayed home with the kids while I went out with my friend Melanie. I love being around her. She is full of positive energy. I am going to get that back in my life. I want my kids to know and to feel that I love them, that they  are irreplaceable, and they have something to give that no one else can.

I can't believe I bought jewelry - I never do. I once bought a watch that was pretty, does that count? It's 2 AM and I should read Matthew and get some sleep. I did practice hymns today - I should have been practicing my Spanish.

January 25, 2007

Another Thursday, another chemo treatment. B~ has a lot going on at work right now, and was unable to go with me this time. We got Tyler loaded up, started off, smelled something funny, went around the block and back in the garage. I double-checked and sure enough he needed a second BM change. It was pretty messy and he needed a new pair of pants, I'm so glad we turned around. He would've been miserable riding all that way like that. We still made it to his appointment on time. He has lost about 6 pounds and still has high blood pressure so they've doubled his med (lysinopril).

His white blood cell count is 1.2 - low, but still high enough to receive chemo. He listened to Harp by the Sea (it was Pachelbel Canon in D), very soothing. I'm glad to have my mom along. We seem to have good conversations and talk about the things that matter. Today I walked her through a vision quest (that's how long we were in the patient room) although we were interrupted quite a few times. She's a good sport. Later, we talked about prayer and making it more meaningful. She told me of a manuscript she had read and it mentioned beginning a prayer by acknowledging Heavenly Father and who He is. Right away, that really gelled with me. I think I'll incorporate it in my prayers. We talked about family dynamics and the intricacies of each sister. It's great that we're all so different and that these differences can complement each other.

As I was reading Farmer Boy - about butchering time- Nicole asked, "What is yearling beef?" I told her it was a one year old cow. "Wait, that isn't fair. You mean the cow is just young, and now they're going to kill it? That's so mean!" We had a discussion about man's dominion over the earth and that animals were put here for us, by God, to be used wisely and carefully. That seemed to assuage her mind a little. She really gets absorbed in the stories.

Spielberg won't be skiing this coming Monday after all, P~ forgot that she has a cub scout field trip. He will have to wait for the following Monday. I tried to help him see the good he could try to get from it - we came up with  - he'll have a whole 'nother week to be excited about it - and of course, he will get to practice patience.

Ellie has turned the left shoulder of everything I wear into her tissue. I have gone through an entire family-sized box of tissues trying to stay ahead of her runny nose - impossible! She loves to bring me her board books and flip through the pages. She is very observant and babble her own version of the story to me in babyspeak. It almost sounds like Mandarin Chinese sometimes.

Michelle spent a late night (until 8:30) at BR~'s house and has arranged a breakfast picnic for tomorrow. She made chocolate chip cookies with Aunt M~ today.  Pretty tasty, although my own cookie cravings have dropped off.

Our Tuesday Key of Liberty simulation went well - the boys really had to find their own way through it. It was challenging and, of course, rewarding. They were the US Senate Armed Services committee and had to decide if they would support a presidential proposal to go in and take out Iranian nuclear facilities and detain their religious Imams. Each of them realized the are lacking in the skills needed to be a statesman.

Time is such a strange concept because it is going by all too quickly and yet all too slowly in the same instance.

Ty will have a scan on Feb. 8th to confirm that the tumor is really responding to chemo. I am still trying to shake off heavy, cloudy feelings. I feel a need to loosed my mind from it's coconut shell hardness and to let the sweet milk of kindness flow out.

Several hymns.

January 24, 2007

Spielberg woke up at 5 AM, dressed, ate breakfast, and discussed the sacredness of the temple with B~. He returned at 8 AM - "It was awesome!" he said. He had such a great spirit about him. His eyes were sparkly. He's growing up.

I took the girls to the Hutchings Museum. They each made medicine bags. They put special things in their bags one of which is an empty pill capsule that you can fill with dirt from a special place - I think Michelle will collect some from my mom's house.

When I was reading Farmer Boy tonight, Nicole asked me if it was a real story about real people. I told her it was. She got very excited and said that's what she wanted to do. Tomorrow she wants me to help her write her life story. She pulled out her journal and is very excited to begin her writing career. She is worried though - she'd like to start from the very beginning (birth) and she's afraid she can't remember everything.

Michelle came home all excited about learning her Article of Faith from activity day. She began looking in her Faith in God booklet. She typed a letter to Kelley today on B~'s old laptop. Both girls would like to receive mail.

I thought my poor handwriting yesterday was a result of being tired - but I think it is due to lack of practice. My Visiting Teachers came and we discussed being an instrument in the Lord's hands. I told them about SayGoBeDo and how it means to say, go, be and do what you are prompted to do. It means being tuned to the Spirit. I struggle right now, I feel very worn down. I am not sleeping well, eating well, or thinking well. I sometimes think that if I just shake myself hard enough, everything will come into focus. I need to boss myself around and just do what needs doing. I know this and yet doing it is still such a distant thing. I will be better!

1 hymn. Finished Shakespeare Stealer w/Spielberg, ready to start The Alliance.

January 23, 2007

Ellie was a mommy's girl today. She kept wanting to eat. She always does the sign for this and then points in the direction of what she wants. Her word for banana is "aminama" and all grown-ups are "mom". She grabs her blanket to bring with her whenever she gets up from bed/nap time. When she dances it looks like total body quivering.

My writing is hardly legible - too tired. Class went well, they felt the need for knowledge and men of faith and character.

Michelle did another 15 math lessons, someone has lit a math fire under her. She made a cute thing for Ty out of pipe cleaners and a sheet of paper.

Nicole kept "playing" at the piano and trying to help Ellie.

Tyler has only peed two times today and had a small bowel movement. Right now he keeps laughing in his sleep. His tumor is still measuring smaller - yes!

Spielberg is excited to go to the temple. I remember that stage and being excited as well.

B~ did work at home tonight.

We had the best clam chowder tonight - Carolyn Hamilton made it and brought it on Sunday. It was delicious!

I'm reading John Holt's How Children Learn and it reminds me to step back and let them learn - I don't need to micromanage them. I attended the Project Pyramid class and learned about navigation and taking angles of the sun and moon to find one's latitude. We also discussed the book, Carry On Mr. Bowditch - a great read, he truly was a passionate learner.

So sleepy...

Several hymns today, some sound right even.

January 22, 2007

Family Night - Proclamation of the Family, assignments made, Apples to Apples.

Michelle had an amazing day she caught Math Fever and completed 17 lessons in her math book. She seems to have caught on to the concepts of multiplication and division. She also connected her round-off back handspring, back handspring. This was a tough thing for her - she had a fear of doing her back handspring and falling forward (over-turning). She tends to lean forward and apply her energy straight up rather than sitting back into it. She kept trying though and did well. B~ picked her up from gymnastics and was able to watch her for a minute.

Nicole was quite distracted, she did listen and read Matthew chapter 1 with us and listened to Farmer Boy and the story of Glass Mountain. Otherwise she scanned through books and played around. I did institute a fine of $5 mom's money each time she hopped on the furniture (I collected $10). It is impossible to keep her off of Tyler and Ellie both - she is always kissing them and trying to do things with them.

Spielberg "worked" on his science fair project on levers. He comes by his procrastination honestly, but it is still extremely frustrating. I read Shakespeare Stealer to him and checked our a copy of Gerald Lund's novel, The Alliance. He amazed me with the level of energy he has (Spielberg, that is). He started "Stick World" - a new comic today.

Tyler's tumor still seems smaller, but he is still having difficulty peeing and with his bowels - it's just not the right amounts. He is also constantly flinching tonight. I wonder if his blood pressure medication is affecting him that way. He is also very nauseous today - more than normal. Erin and Corinne came today.

Ellie has a new favorite activity, we have board books that have a bear, dog, or other item on each page and she loves to find each one. We do it again and again. She is communicating more and more.

I went to the library and checked out How Children Learn, The Virginian, Uncle Tom's Cabin, and  Siblings Without Rivalry. The first three are for papers I'm writing, the last is to hopefully help with a few problems around here.

Sunday, January 21, 2007

Two inches of snowfall. It is so cold outside that the snow is glittering in the sunlight. Nicole commented on how pretty it is. It love it when it coats the trees with a white blanket.

Tomorrow will have to be an insurance day. It is tough to keep up with everything.

Ty's tumor measured much smaller - I hope it stays that way, but it usually tends to grow a lot by Wednesday.

Spielberg and B~ attended a Youth Fireside tonight with a theme of "Let Virtue Garnish Thy Thoughts Unceasingly."

We read the Book of Mormon, Thumbelina, Fifty-five Fathers, and Shakespeare Stealer.

Ellie and  Michelle were tough today. I think they have a bit of cabin fever. Can't wait until it's warm outside. Nicole is sick, and it looks like she has a sinus infection. Ellie had 3 diarrhea diapers today - she also had to regular stools and a few wet ones - I hope it clears up soon. My days have been reduced to writing about diarrhea, and her bottom is getting pretty sore.

I practiced hymns today. Some are even starting to sound like they're supposed to.

I am struggling with prayer right now, I want it to be more meaningful, more personal. I am trying to envision myself at Heavenly Father's feet - it is very difficult to feel worth enough to do that. I have so many shortcomings, and I am trying not to get bogged down by them. I am trying to to keep a prayer close to mind throughout the day. I am trying to remember to pray when I begin to get upset or when I forget that everyone is a child of God. I think my language has improved and for the most part, my patience - that last one might always be a struggle.

Time to read in Matthew.

January 20, 2007

I watched Todd Skinner's "Beyond the Summit" DVD presentation today. It is an excellent presentation and reminded me of the attitude I would love to have in the face of adversity. One man on his climbing team, Jeff Bechtell. was supposed to only run base camp for them, but he became the man who did what was needed. He had never climbed a mountain before in his life and he started on this one - Trango Tower - the hardest, highest climb in the Himalayas. One day during a storm, he let out an anguished scream. The members of the team thought he had reached his breaking point and had "lost it".

He started saying - "I can't find our second stove I lost my left glove, my eyes are frozen shut.... and this is just, just, JUST how I like it!

That is who I want to be, able to embrace adversity and let it bring out the best in me to rise to meet the challenge and love the journey. It is not who I have been - a month ago I was a quivering mass of jelly. I let my mind think I couldn't handle life, that it was too hard to think of losing a child - it wasn't fair. I was completely focused on me--it wasn't right, it wasn't helpful.

I am trying to remind myself of the other quote by Todd Skinner - Carbon under pressure becomes either Coal Dust or Diamonds. We are each carbon under pressure and it is our decision whether we will let that pressure turn us to dust or create a beautiful diamond. Tyler is and always has been a diamond _ I aspire to his level of clarity and brilliance.

B~ and Spielberg attended a showing of "Mr. Dung Beetle" at an LDS film festival.

Michelle went with B~ and C~ to see B~'s sister compete at ballroom dance. She is now begging for lessons so she can dance with a boy.

Nicole is still undecided about which type of dance she would like to learn. I spoke with my sister Kelley and M S today. It's nice to be thought of and checked on. Finished Irene's story - must read! Piano, yay.

January 19, 2007

Erin and Starla saw Tyler today. He is starting to get a reflex (to smile when you stroke his cheek) on his left side of his face that hasn't been there for so many years.

Ellie is still sick, but she is doing better and wanting to eat again.

Nicole played with Emma and Michelle practiced her gymnastics. Emma's mom is starting a dance group and the girls would like to join.

B~ and I attended a party held for his work. They had Frank Abignail speak to us. A movie and book were made of his life - "Catch Me If You Can". He was a criminal who forged checks from the time he was 16 until he was 21. He posed as an airline pilot, pediatrician and lawyer. He served time in French and Swedish prisons. He served four years in an American prison and when he had eight years left, the FBI said they would let him out if he would work for them until his time had been served. He did and stayed on 26 more years.

 The whole point of his presentation and sharing his life story was to stress how each child has the right  to a mommy and a daddy. His parents divorced when he was 16 and rather than choose between them, he ran away. He didn't see his mom again for 7 years and his dad died while Frank was in a foreign prison. He never had a regular adolescence. Divorce took it from him. He talked about the decay of society and the lack of ethics and character being taught by parents and schools. He talked about how his father was a "daddy" and that not all men are. His daddy would pull the blanket up on them and kiss their cheeks every night and then whisper, "I love you, I love you very much" into their ears every night. He never missed- even if they were already asleep when he got home.

I've nearly finished Irene Gut's book - an amazing woman!

Piano.

January 18, 2007

Kenna came and colored my hair today. No more gray, at least for a few weeks.

I took Ty's blood pressure and it was 127/100 - probably not a valid reading. When we took him into chemo it was 176/116 - dangerously high. We figured out that it might be a renal artery problem. When he has been sitting for an hour, the artery in his right kidney starts sending out signals that it isn't getting enough blood flow and so the heart must work harder. They have prescribed a drug that should block that signal. The main concern is that the left kidney might be having trouble too and really needs the increased blood supply. They will monitor him closely and we will be careful that his is not sitting for long periods of time - it's probably a wonder that he made it home alive after last week's chemo (2 1/2 hours in the car!) All his numbers look good. Dr. Randall's nurse contacted Dr. Chen's office and sent all the treatment notes over for review. They should be contacting us soon to schedule an appointment with her.

My TSH is .02 - definitely hyperthyroid and suppressed. The uncomfortable swelling in my neck has finally gone away. Next week I'll get my thyroglobulin results.

Ellie was not doing so well so when I got home at 6:30 from Ty's marathon chemotherapy day, I bundled her up and went to the doctor's office. She hasn't lost any weight, but she's only had two wet diapers today and two diarrhea ones - both required baths. The doctor said that if she has diarrhea longer than 10-14 days, they'll have to culture it.

I have been reading a very inspiring book about Irene Gut. She was an extraordinary ordinary woman who made a difference to several Jews in WWII. I don't think I can rightly complain about any circumstance I am in - I will always be more fortunate than the eastern europeans of the 1940s.

Read to kids, practiced piano. Changed a boatload of diapers!

January 17, 2007

Here it is 2 AM. THe days are not long enough! I submitted two papers for my 5 Pillar Certification. I attended a four hour USOE meeting for the State deafblind Plan and found that they are sneaking past a definition on hearing loss that does not include functional hearing impairment.

It may be my imagination, but I think Ty's tumor is smaller. I hope I'm right. He's running a low-grade fever - 100.4, they told us not to worry unless it gets to 100.8 and stays there for over an hour or goes up to 101.3.

I went to Dr. M~, she wants to do an MRI to see if my lymph nodes are smaller and a high resolution ultrasound of my neck in July. I had my blood drawn and she's going to check my levels.

Nicole had gymnastics, Michelle played at Sydnee's and Spielberg went to scouts.

Ellie might be a bit dehydrated. She's still having diarrhea and not many wet diapers. Her skin looks fine and she doesn't have a fever. Hopefully she'll be better tomorrow.

We gave Ty a haircut tonight. Boy, did he protest. I'm glad he voices his opinion, but it sure is funny that he gets just as mad about getting his hair cut as he does about going to the doctor.

Cape on neck, tight
Mist on hair, wet
Buzz on neck, tickle
Comb in hair, prickle

Leave me alone,
Go away!
My hair looks fine,
let it grow!
I'm telling you:
NO HAIRCUT!

Can't you hear me?
****

Chemo day tomorrow
poor Ty
poor us
four wasted hours
killing time
not cancer cells....
if only

January 16, 2007

Yesterday was fine - until I came home after Michelle's gymnastics. I was very frustrated with her being so downhearted and refusing to "go for it". Spielberg was being a tease and Nicole was being very cross and whiny. I snapped and yelled - a lot. Well, I shouldn't have at all. I was judging my kids and then judging my self-worth based on their actions. I must constantly remind myself that each person is a person - they have their own feelings and needs and they do not always coincide with my expectations, nor should they. I will not slip into deluded patterns from my past. I will love my kids and B~ and put it foremost. It truly is what is meant by losing yourself to find yourself. Remember, remember!

I read Little House - Farmer Boy to the girls after they did their math. B~ took Tyler to see Dr. Randall. He admitted to not really knowing what to do. He feels we should keep on the same course until the next scan on Feb. 8. In the meantime, his office is arranging for us to meet with Lei Chen, a desmoid tumor oncologist. We'll see what her impressions are - maybe we are just too impatient. I sure am.

I took Nicole, Michelle, and Spielberg to Purple Turtle to try Fish and Chips, and then to the library. I'm looking forward to reading about Irene Gut in "In My Hands". She helped feed Jews during the Holocaust with no thought for her personal safety.

I then took them to Target where we purchased a new leotard for Michelle. Spielberg was very patient and pretty well-behaved. I read three chapters to him from "Shakespeare Stealer". He is now interested in Hamlet. I think I'll read to him from "Tales Out of Shakespeare" - it is exciting to see sparks light in his mind.

Ty has started trying to through up whenever we go to the hospital. Ellie can now say "puppy" and find all the puppies in her book.