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!


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:

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.

Wednesday, March 9, 2011

January 15, 2007

(Insert horribly sappy "civil rights" poem here)

Today felt as if it consumed itself, I arose early enough, but the time slipped away so quickly. Ellie had a temperature and has been tugging at her right ear. I practiced piano with her - she's quite the competition- then she fell asleep on my lap while I read from The Fourth Turning. I wrote about 3 paragraphs for my paper and polished off the Walden paper for submission to an online journal.

I watched Michelle at gymnastics, somehow I need to help her see or understand the power of positive thinking. She is very hard on herself when the teacher doesn't rave about her. She needs some more appropriate clothes and a go-for-it attitude. I'll try to encourage her more.

January 14, 2007

Periodically, we miss a Sunday at church. It's not something to be proud of or to turn into a habit. It just happened. Both B~ and I are suffering from lower back problems - probably due to leaning over a hospital bed several times a day. Today was a recoupment day. We read scriptures and I read to the children.

Ellie seems to have a stomach bug, Nicole wanted to learn how to write each letter of her name in cursive, and Michelle asked to start keeping her paint creations in an art binder/portfolio. They also built a fort from blankets, pillows and couch cushions. Spielberg made a Lego stop-gap animation and Ty bed-danced.

Blaine and I read. I practiced hymns. We watched family videos, and basked in family time. Definitely church next Sunday, and oh! we had French Toast - breakfast for dinner.

January 13, 2007

I had terrible insomnia last night and didn't fall asleep until about 5AM this morning. Not a very good way to start the day.

Tyler wasn't nauseous until about 11 PM tonight. I held he for quite awhile. We listened to a lot of music and did "arm dancing" today.

Spielberg went to a day camp at MD for scouts, then he and C~ went sledding down the drainage bowl at our old Stake Center. After dinner, he went over for a late night. While there, some other boy in the ward pressured him to look at something on the computer. He felt that he shouldn't and knew there was something going on.  All of the sudden a horrible picture popped up on the screen-it was of a scary nature. When he came home, he realized hoe disturbed he was and that he couldn't get the image out of his mind. We sat on the couch in his room and discussed a number of things.

I tried to help him recognize that the Spirit had prompted him. We talked about what happens when we don't listen to those promptings. He came up with how he wished he'd handled it. We also talked about the  importance of only letting good images into your mind (pornography for example). We also talked about peer pressure and ways to deal with it. Most importantly, we talked about dealing with our fears and relying on and trusting in Heavenly Father. I really enjoyed talking and sharing with him. He is a wonderful boy and I am very impressed by him. He commented that he tried to spare another boy from the same experience.

Our friends, the Ms~ came over and played Ticket to Ride with us. Michelle and Nicole showed off their gymnastics talents for them.

Michelle attended a friend's brother's basketball game, played, and played and invited Br~ (who happens to be a distant relative on my dad's side) over for dinner.

Nicole played in the snow with MJ. She was a very giggly girl today.

Ellie was funny as ever. Her arm seems just fine today, thank goodness. I think I changed 4-6 messy diapers today. I wonder if she is coming down with something.

I practiced piano and my handwriting today. I also studied Article One, Section 3 of the Constitution, a couple of pages from Cultural Literacy, and the Fourth Turning.

Dr. R~'s assistant, P~, phoned around noon to say that he would like to speak with us in person. We will be meeting with him Tuesday afternoon to discuss our options for treating Ty's tumor. I called his office to make sure that he had been updated on Tyler's progress and to tell him I had emailed Dr. S~ (of Florida)  about Ty's situation. His response and overall feeling was that the chemo wasn't working and that we should consider changing his treatment. I have been doing a lot of research and double checking to make sure the pathology is correct on the tumor biopsy.

I'm sleepy tonight and so had better close before I fall asleep on the book and wake to an ink-covered face. Lastly, I must mention how great B~ is. He helps so much with everything here and even played errand-runner dropping off prescriptions, buying groceries, and picking up pizza for dinner.

Saturday, March 5, 2011

January 12, 2007

Tyler's teacher and OT came over after school. I showed them how he loves to be moved when the music is blaring. Nate P~, the OT, came up with a way to modify his remote so Ty could skip songs. We'll try it and see if it works. We brainstormed some different ideas for things he could work on while laying down.

Tonight the whole family was dancing together. We took turns swinging Ellie in a blanket. She loved it. I accidentally hurt her wrist when I lifted her to spin around. I reached for her two arms and as I grasped her right hand/arm, I felt a "pop" at the pinkie side of her wrist. She started crying immediately and began flailing that arm. B~ took her to see Mike (bil and PT) and he checked her out. He felt she may have sprained it, but nothing major. He taped it and within 10 minutes, she was fine. I hope it lasts.

Michelle went with her. Nicole has a sick tummy and Spielberg's camp out got cancelled but he's going up during the day tomorrow to work on merit badges.

January 11, 2007

Tyler's sixth chemotherapy today. We were done by 4 pm, but the roads were so bad from the storm that it took us two and a half hours to get home. Poor Ty was moaning from having to sit so long.

His numbers looked good - his ANC was 1.2, not bad. Platelets were back up to 420. Blood pressure was crazy 150/98 and pulse 148. I'll check him again tomorrow and see if it's still high. Some of that may be stress from the hospital.

Michelle seems to be getting sick - stomach flu? I think that's what Ellie must have had. Let's hope Ty doesn't get it.

B~ had to work, so my mom went with me to chemo.

January 10, 2007

Quick day. Morning spent on the phone with insurance, doctors - you name it.

Michelle and Nicole went to Liberty Girls, and we listened to a woman who served a mission to the Navajo people. It was fascinating to hear about the coming of age ceremony for girls. Then off to gymnastics for Nicole and Activity Day for Michelle.

Dinner, scriptures and prayers. Young Men's for Spielberg.

Thursday, March 3, 2011

January 9, 2007

Michelle wrote down her first recipe today and she made caramel popcorn. It was very tasty. Aunt M~ helped her while I taught/sat in on one of my Key of Liberty classes in the basement.

Spielberg made a lot of comments during class today and I sure enjoyed him. He went shopping for scout winter camp gear with B~ tonight. We talked for about an hour after I got back from my Thomas Jefferson Basic Training Course class by Diann Jeppson and Jody Palmer. He told me all about every subject and everything that was happening at school. He said he was a little bit Lincoln-sick, meaning he missed the school he was at last year. In fact, he went over there after school one day to visit - he found that a lot of his friends from last year weren't still there. He really has a lot of curiosity and natural desire to learn. I hope to make it fun for him when he's home for school.

Ellie had a tumble today. She woke up from her nap very messy - her diaper had leaked all up her onto her back so I put her in the tub. I had just removed her shirt and turned on the water. I used a few wipes to clean her off a bit before washing her up She reached for some tub toys and slipped. She fell on the drain, bumping her cheekbone and right under the running water. It really scared her and it was the shortest bath she has ever taken. She has quite a bruise by her right eye. She has been very interested in looking at books lately - I am teaching her the sign for book and she's catching on. Her favorite book right now is about Baby Mickey Mouse - not quite a classic, but she loves it. Whenever we read scriptures, she points at the words and babbles along with whoever is reading. All the kids crack up and we usually have to put her to bed while we read.

Nicole just loves Ellie and is always kissing her. Nicole vacuumed all the dropped pine needles of the upper stairs - leftovers from the Christmas garland. What a good worker!

Tyler seems to be feeling better today and enjoyed the music. He got a kick out of the vacuum too. He is breathing very loud - I wonder why. He is starting to  have a difficult time urinating but he doesn't have a fever.

Tonight at the TJed class we did a vision quest. It was a very interesting experience. I will briefly relate mine. We imagined ourselves at a comfortable place (mine was the beach). It was a warm day with turquoise waster, gulls and waves rolling in. I was in a beach chair reading and enjoying the horizon. We were told to envision a doorway with no door. It had stairs going down, at the bottom we were presented with three doors. On the right was a red door - it felt hot- too hot to touch and behind it you could feel anger and pain. Upon opening the door you were to see the most horrible painful thing you could imagine. I saw Tyler in a casket, meaning he had died. I was overcome with grief and tried to stifle my sobs. Then we were told that our family came in. We all comforted each other and found strength together. We might not be finished, but we had to leave. Then we closed the door.

In front of us was a blue door and behind it was coolness and a feeling of distance. It was freezing to the touch. When I opened it, I was told to envision a community I saw what I thought was my extended family - maybe living relatives and then without seeing any faces I had the feeling they were other deaf blind families. Somehow that doesn't seem right either. Maybe they were ancestors - it seemed they were standing in a mist and in similar clothes almost as if they were transparent. We were told to imagine our family coming  in too. I'm not sure what we did specifically, but it felt like we gave strength and support there. We were to leave our family there and close the door.

The next door the one on the left was a yellow door and behind it pure joy. We opened the door and saw our family inside, enjoying each other. I imagined Tyler as able-bodied and B~ was tickling the kids and playing with them. When I stepped in the room, I had the feeling of, "Oh no what are you going to make us do now?" and then just as suddenly we were all enjoying a very peaceful loving time while I was reading to the children. I don't really remember what B~ was doing at this time.

Then it was time to leave. I faced the stairs and could see a light at the top, I was drawn toward it. At the top of the stairs, someone greeted me. It was Tyler all grown up and he put his right hand on my shoulder. His left hand he put into a pouch he was wearing and pulled out an object which he handed to me. I couldn't really make out what that object was but it seemed that I caught a glimpse of a silver bead (like the kind on my watch) but I had the impression that it was part of a chain or strand. I wonder if it was my watch - hmm. Then he put his left hand on my shoulder and pulled me to him and embraced me. Then he turned me away from him, and I was facing a path and the horizon.

There are many more details to this experience, bit I tried to keep it brief.

Sunday, February 27, 2011

January 8, 2007

The girls and I finished cleaning and organizing the basement. Of course then they had the perfect place to play with their Polly Pocket dolls - they did clean them up though.

Tyler seems to try to throw up every time he foes to the bathroom - I will have to ask the doctor about that. His hair is starting to fall out - only about 20-30 strands a day, but that is a lot for him. He is developing some mouth sore and I'm going to get some toothettes for him to swab some "magic mouthwash" in his cheeks. I am having to put Vaseline on his lips about 5-6 times a day, they get so dry!

Nicole worked a lot on her front and back walkovers - her back ones are pretty good but she keeps tucking her chin and collapsing on the front ones.

Michelle had her first day in her new gymnastics class and she was a bit nervous. They are learning aerials and front handsprings. She will get the hang of it though and she has beautiful body lines - another mom even commented on it.

Ellie had the  worst messy diaper - all up her back - it was a definite bath time cleanup. She loves the tub. She kept wanting me to hold her and look at books. She also enjoys sitting next to me on the piano bench and playing very gently right next to my hands when I practice.

Spielberg finished his book, Freedom Factor. B~ said how proud he was of him and how he'd now read more books than he had at his age. Spielberg has become more of a tease since going back to school - I kind of thought it might happen, but I'm still disappointed. B~ received a bleated Christmas gift at work today - a Christmas ornament from the White House.

January 7, 2007

Today was our ward fast for Tyler. We are hopeful that our will is in line with God's will. We are praying that he will recover. I received a discouraging email from someone with the same type of tumor. She said that most tumors get central necrosis (or death) when they grow very large because the center becomes farther from the blood supply.

I am still hopeful in Tyler's case because he has some "peripheral enhancement" as well. This means that some of the tumor is dying near the surface in the middle part of it.

B~ bore his testimony in Sacrament and I bore mine in Relief Society. I have never had such a feeling before - it was almost like I was pulled up there. I have come to realize even more the importance of prayer. For a time, I was so upset with everything that was happening to me (cancer) and to Tyler (tumor0 that I stopped praying. Our family still said prayers, but I would only lie in bed and think them - it made me less and less able to handle life. It wasn't until I started praying again that the feeling of helplessness went away and the faith, hope, and strength came back. I have my Bishop to thank for this reminder.

I know that I have had unjust feelings before that our ward is very self-absorbed, but I'm beginning to realize that we are all dealing with trials and most of us are doing the best we can. Having the ward fast with us was a n amazing experience. It is wonderful to feel the support of so many people. In some ways, I hope so much that the Lord's will is my will - for his complete recovery - I don't want any of the children to think their faith and prayers are not being heard.

January 6, 2007

I took Michelle, her friend B~, and Spielberg to the mall today. She purchased a frog Webkin - a stuffed animal that you can use to play games with on the computer.

I held Ty on my lap - I love snuggling with him - I do it every day.

Ellie is so funny - she pulled out some paper bowls from the pantry and began  spreading them out and then turned them over one by one. She loves to hug you and dance with you. She always dances with one arm held out from her body, like an old fashioned slow dance.

Tonight, my Aunt M~ came and stayed with the kids so B~ and I could attend a support group for parents of deafblind children. It was a nice opportunity to visit with parents who are dealing with similar issues. We had such a good time visiting that the time away from us.

We are participating in a ward fast for Tyler. I am praying that Tyler will completely recover if it is the Lord's will and that B~ and I will know the best way to help him.

Poor Nicole, she needs some girls her age to play with. There is only one on our street. She keeps asking me to call a friend of hers that moved to Salt Lake. It will be good for her to go to Liberty Girls again and spend time with those girls.

Tuesday, February 22, 2011

January 5, 2007

I finished my paper on Walden today. It turned into a completely different paper than I started out to write.

The girls both worked on math and Michelle did some cursive. I need to get back to doing read-aloud again.

I think the weather is getting to me. I would sure love to feel the sun in all its glory right now. I have completed my goals for the day except for the unit study activity and piano practice - I am tempted to do it right now even though it's midnight.

Michelle had a little restaurant at lunch and served everyone. The girls and I jumped rope today - it was fun and good for the soul. We were a bit creative in our selection of rope, and used Spielberg's old karate belts.

Ellie was great fun today. She is giving hugs all the time. She has also discovered baby dolls. It is a treat to watch her sing to and dance with her baby. She is fascinated by the eyes that close when she's laying down. Oh! it was her first experience with bubbles. I thought she wanted to take a turn, but instead of blowing, she put the bubble wand right into her mouth.

Spielberg was not his usual cheery self today. I think school really affects him - his teacher really embarrasses him in front of the class. He doesn't want to quit so we'll do our best to support him.

Tyler got nauseous today - which is a bit soon. I also noticed several strands of hair on his pillow. He took a very long time peeing and I kept telling him I would have to cath him - no effect - until I put on the gloves and got out the stuff. Then he went right away.

January 4, 2007

B~ and I have been married for 16 years today. After spending all day (7:30-4) at the hospital with Tyler, we enjoyed a nice dinner at Chili's - we even saved room for dessert. It is hard to believe that so much time has gone by.

About the hospital - we arrived at 8:30 and went to chemo so they could access his port for the IV contrast in CT. Small problem, his line had formed a clotted flap over it. They put in 40 mls of saline and couldn't get any blood back. Tyler tried to throw up twice before the CT. They finally decided it would be okay for the contrast to go through the line and sent us down for the scan. After the scan, Tyler tried to throw up three more times - it was awful. They injected TPA - a clot buster - into the line and let it sit for 30 minutes. It worked!

In the meanwhile, Tyler went through 2 pairs of pants, so B~ ran to Kmart and bought 3 more pairs of sweat pants. Most of the time we just sat there and I held and rocked Tyler.

I think he tried to throw up because he had so much volume in his stomach for the 800 mls of contrast for the CT scan. We happened to see the surgeon and he said that the tumor is bigger but that it appears the center is dying. They drew blood and since all his levels were okay, they ordered his fifth round of chemo. The tumor is now 18x16x12 ( a big difference from 10x10x6 just 12 weeks ago).

We are encouraged by this latest development. The doctors feel that it will soon begin to shrink or else it will continue to grow around the dead cells. Right now, his kidney, bowel, and bladder are functioning well enough to keep on trying chemo.

I am hopeful that the ward fast will help this tumor to shrink. Surgery is going to be a much harder option.

Oh Ty - I wish I could take it from you - all of it so you could run, play, and just be a 14 year old boy who thinks about football, basketball, skiing, and friends. I know those things aren't happiness - a family is, and ours is 16 today.

Sunday, February 20, 2011

January 3, 2007

B~ attended an IEP for me today - to switch Tyler's services to Home/Hospital.

I have been sick today and had a two hour nap when Aunt M~ was here. The girls did 2 pages of Math, listened to two chapters of Farmer Boy, and watched a made-for-TV Heidi miniseries.

They also built little "nests" from wadded up blankets and brought out toy birds and pretended to be birds with them. It was so fun to watch them talk to their baby birds and encourage them to learn to fly.

I managed to practice piano, read 30 pages of Walden, exercise for 30 minutes, read scriptures, practice penmanship, look up - or rather, jot down 6 new vocabulary words to look up later and sign up 3 new students for my Key of Liberty class.

Erin worked with Ty today. His tumor measures 28x24 cm - we'll see what the scan says tomorrow.

I rescheduled my doctor appointment for 2 weeks from now - I was too crummy feeling to go anywhere today and that includes Nicole's gymnastics class.

Read Noreen's email about New Zealand - I'm green with envy!

January 2, 2007

I am sick today, bad headache behind my eyes, more especially my right eye.

I took the kids to the library, Spielberg stayed home today but is going to school tomorrow.
Cancelled Michelle's piano lessons until further notice.
Ellie hit her head twice today.
Tyler is still feeling nauseous.
Nicole and Michelle and Spielberg went grocery shopping with me too.


January 1, 2007

For a time I was recording journal entries on my computer, but it's just not the same. I will have to settle for writer's cramp and barely legible handwriting.

I'm not going to catch everything up, just some and then resolve to being more consistent in my writing.

Tyler has now had 4 chemo treatment and in 3 days he will have a CT scan to see how the tumor is being affected by the chemo. He has managed fairly well so far. For some reason his platelets are very high, but they don't seem to be very concerned about it. Last time, we done in about 3 hours - the 3 other times took 4-6 hours. The actual chemo treatment only takes about 30 minutes. Once, his ANC (white blood cell component) was so low they reduced his chemo dose by half. He gets a dose each Thursday and by Sunday-Tuesday he is quite nauseous. We are able to give him Zofran and it helps quite a bit.

Spielberg us starting back to school tomorrow and seems to be dreading it. He doesn't want to quit in the middle of the year though. Lately he has been better at home and helpful with his sisters.

Michelle is playing more with some of the girls in the neighborhood. It seems to be a good thing for her. She is very good with Ellie. She is working on developing good habits related to picking up after herself. she finished a baby quilt for Kelley and has started one for Kenna. She plans to do one for Sydney and Emily. She has learned to do a back handspring.

Nicole seems very tired and unhappy lately. She is very much about what is fair and what is not. She sees things very much in absolutes. It is a challenge for me to help her notice the good things too and to show patience with her.

Ellie is folding her arms when we say prayers. She is eating - a lot! She gives out lots of hugs, but no kisses. Today she has started carrying around a baby doll and hugging it.

When we were first finding out about Tyler's tumor and  and the treatment options, I was filled with an overwhelming sadness and an anger at Heavenly Father for letting this happen. The sadness was so hard to overcome. Part of it was my thyroid levels coming back in to sync, the other part was feeling ashamed at not being able to handle what I'd been given. Slowly, I have been regaining my perspective. Prayer has become a bigger part of my life. I want so much for Tyler to be healed, but I also want what the Lord wants - I wish I knew what that was.

We attended a funeral for Travis Carlson last Friday. He was a boy just one year older than Tyler who was also deafblind. His parents are amazing people - they created systems and blazed trails for other parents. Ii have a lot  of admiration for Derek and Stephanie. The funeral was a beautiful service. The hardest part was when the family said their final goodbyes and then the casket was closed. I don't know a single mom who could make it through that with a dry eye. The most ironic, yet beautiful thing is that Travis donated his corneas. Amazing that a blind boy could give the gift of sight to another.

It made me reflect on the eventual day that one of my children may be put to rest. I hope for Tyler that it is many years in the future, if it is not I pray that I will have the strength to get through it.

B~ has attended all but one of Ty's chemos - he is a great support to me. Tyler has to be held the entire time because it is so traumatic for him.

Wednesday, February 16, 2011

December 3, 2006

I went to the hospital the Tuesday after my dose and had them check my rads level. The tech said I measured at .2 rads - when they dosed me it was 32 rads at one meter. I hope the iodine actually did more than kill my taste buds. Even my taste buds came back sooner this time - they are almost back 100%. I still have the strange sensation in my neck.

This past Thursday, Nov. 30, B~ and I met with Ty's General Surgeon. Let me start at the beginning - we reported to radiology and started giving him the oral contrast for the CT Scan at 8:30 AM, about 10 AM they put him on the CT Scan bed. After two failed attempts to start an IV in his left arm, they called in the IV team. They got one right in on his right arm.

Lesson for future reference:  always have the IV team called first!

The scan was done, the radiologist actually came and talked to us and showed us his scan films on the computer. It is really big He asked us a few questions and then we raced over to Shriner's Hospital. A sweet guy named P~ (sporting a ponytail and major coffee breath) fixed Ty's DAFOs and measured him for a Swash brace.

We raced back to Primary Children's and met with Dr. S~ who gave us prescriptions for a hospital bed, b~, and miralax. For the first time, I felt like she didn't know what to do with us and was almost trying to push us out the door.

Next, we met with Dr. S~ from General Surgery. He looks a bit like an actor who played an evil policeman in a movie - military haircut, brown suede blazer, chiseled face. Nice enough, but quite inexperienced with this type of tumor. B~ convinced him to look and compare the measurements from the day of surgery and that morning's CT scan.

Prior tot hat, the doctor had felt it hadn't really changed. I asked him if I could lay Ty on the exam table and see if he still felt that way. He took one look and said, "That's bigger, much bigger." He then looked at the films more closely and it wasn't until he read the findings that he realized the tumor is pressing down on his right kidney and pinching off his right ureter. It is also very close to the major blood suppl for his right leg.

He then left to meet with oncology and radiation to tell them about Tyler. He first apologized for not having them meet with us before we left the hospital when he had surgery in October.

He came back and said we'd be meeting with them on Tuesday of next week. There is also an orthopedic surgeon at the hospital who has experience with this type of tumor.

I have started researching and came across a cancer email group. There are two other boys in Utah and two women with his type of tumor. Only one (a woman) has one in her abdomen. She gave me the name of her surgeon in Salt Lake. We are finding that there are experts on desmoids but they aren't board certified in pediatrics and so aren't allowed to treat kids. Frustrating!

School has been going well.  Spielberg has been asking to stay home and work on memorizing the the Declaration of Independence. I think it is great that he is applying himself. It would be even greater if it was more timely. B~ has been reading a George Washington biography with him, and it has been a great father-son bonding experience.

Michelle has learned to cast on and do a knit stitch. She is doing quite well. She like to knit using the continental method. She is working on piano - I think she is going to take from me until she is more dedicated. She is doing awesome in gymnastics, she has beautiful front and back walkovers. She is working on gaining confidence in doing her back handsprings. I know she can do it.

Nicole is sick right now with a tummy bug. Her lymph glands (neck) are very swollen. Her eczema is also very bad right now. On Friday, she really impressed me with her dedication to her school work - four math lessons and two reading lessons. She also said the scripture and prayer at primary today and did very well.

Both girls shared gymnastics skills at their Liberty Girls group this week.

Tyler is home full time. He is too uncomfortable when sitting and this makes eating difficult. I will write more later about his treatment with Nina.

Ellie has learned to climb up on the dining room chairs. She is also trying to mimic the girls' back-bend meltdowns. She looks back, puts her hands up and falls back. She is so funny!

B~ is working a lot these days - a deadline is approaching. He still finds time for all of us though I don't think he has had any for himself.

November 13, 2006

I'm still in isolation at my mom's. I worked on Kelley's quilt and completed three additional blocks. After I finish the last block, it will be ready to piece together. I am running out of silk thread, and I hope I have enough to finish. I could do four additional corner blocks, but I am running out of time and want to be finished with it. I am hoping that it doesn't set off and radiation detectors when she flies back to Maryland.

I've decided not to take any more Benadryl. I'd rather have a rash than be tired or "out of it" all the time.

Yesterday, I did a lot of reading. My mom fixed a nice dinner of roast, mashed potatoes and gravy, corn, and salad.

I am really missing my family and I'm still very concerned for Tyler. It is so hard for me to sleep here and my sleep patterns are all mixed up. I have the same anxiety as I did at the hospital, and can't sleep with the door shut. And yet, leaving the door open seems to conjure up more mind demons.

My throat still feels very strange when I turn my head to the right. It is hard to talk or even swallow - I hope that means that the iodine is working this time.

I spoke with Tyler's vision aide (from school) for quite awhile today. Her daughter has thyroid cancer and she's pregnant. She's trying to decide what to do. I don't envy her, but if I had it to do again, I would've nursed Ellie and then treated my cancer. I don't think I gained anything by treating it so soon after having her. I wish I would've had more of those moments of one-on-one with her.

Tuesday, February 15, 2011

November 10, 2006

Well, I'm back. I was right - nothing new or significant on my MRI that requires surgery. Although they did comment on the neck injury I have (most likely from a car wreck when I was just out of high school).

They ordered 200 MCI does of Radioactive Iodine which I took on Wednesday about 4:30 PM. I stayed in hospital about 48 hours. The first day I measured 32 rads at meter. Nobody took a reading on Thursday, but Friday, at 2 today,  I measured 3.8 rads at one meter. Ideally I should measure .8 before I hold Ellie or Ty for any length of time. I'll go back in on Wednesday for another reading.

I've been taking Benadryl again because of my allergy to iodine. I still have my sense of taste, but I expect it to go in the next coupe of days. As far as other symptoms I'm just starting to feel the bone pain more often and my eyes are a bit drier. the main effect is supposed to be lowering my immune system. It tends to interfere with your bone marrow.

I don't think I'll have to do another treatment after this - here's hoping anyway. I hope I sleep better here than  at the hospital, and I hope the damage to my salivary glands is minimal.

November 3, 2006

I found this pen (the Zebra F402) at Walmart not Smith's. I bought 2 for $5.77 Funny, but I love the feel of writing with a good pen. I first borrowed it off a nurse in ICU, and then just had to have my own.

Tomorrow is my MRI. I'm pretty sure they won't find anything to surgically remove. It is my feeling that there is cancer in the notch of my collarbone, but I don't think they'll find it for a few years yet.

My mom asked me if Ty reliably communicates "yes" and "no". I told her that he does. She said she asked him if he could tell her if I'd be alright. He shook his head no. She said she somehow thought he might know the answer to that question.

I am wondering how one cultivates patience. I also wonder if the Lord is thinking - "How much more is it going to take before she (meaning me) will fully rely on and come to know Me (meaning God). I can no longer wonder or think with incredulity on those in ancient times who had so many trials and yet were too proud to go to the Lord. Somehow, it is inherent in human nature or an independent spirit to think that things must be conquered on one's own. I never really saw that as pride before, but know I know it must be. In the end, the only absolute is God and His love for us.

I am sure life would be different if I would allow myself to go to the Lord and entrust Him with my life. It is more than just saying I will or can do whatever trials come my way- it is realizing that it isn't just about enduring, but enduring with God. Submitting to His will and committing one's self to continual refinement and achieving a mission of inner peace/knowledge of God's love and sharing it with others. It is in being, not just doing. I want to follow these thoughts more deeply in the future.

Note to self: Remember Jauvert and Nike Slogan: Just Do It!

Children are people too. "Seeing another person as the problem, is the problem." I am the solution and the problem. I have the power to be both. What am I actively becoming, not just doing?

I know two or three genuine people. They are not perfect, they are people after all. But they are themselves all the time. It isn't forced, they give willingly of themselves because they genuinely care for and value others. They are a glimpse of God and I have not seen one bit of pretension in them: Diana S, Audrey (my grandmother), and Nina Faye I. are all living examples to me.

They are who I want to be like. It is far too awesome and quite impossible for me to think I have the ability to become like God. These women, however, are well on their way and help me to digest and bring it down to a level I can understand.

I took Nicole out for Chinese food, then we swung by and picked up a pizza for the rest of the gang. We put on our pajamas and watched a movie together downstairs - High School Musical. She was so cute and just oozed with little girl happiness from every pore. You could tell she felt special and savored every minute of it. I really love the way she scrunches up her nose and gives you a twinkly-eyed smile!

Monday, February 14, 2011

November 1, 2006

I thought I'd be in the hospital by now emitting waves of radioactivity, but things have a way of changing all the time.

Monday, Dr. M called and said she wants an ultrasound of my neck and is referring me back to my cancer doctor.

I didn't take my Benadryl this (Monday) morning so I could drive Katie to a meeting with Linda and hopefully have a meeting of the minds. Linda has taken several comments out of context and is very upset that we held a meeting without her being there on Friday. Holding the meeting was my idea. I was worried that I wouldn't be able to contribute to bringing a peaceful resolution to the problem (as I assumed I'd be admitted to the hospital on Tuesday). I don't want to dwell much on the details of that situation because it feels like gossip, I only want to add that it seems to have resolved peacefully.

I received another phone call from Dr. I, last year's oncologist - who sounds younger that she looks by a good 20-30 years. She said there was more active disease than they thought and normally they would treat me with fragmented doses of radiation which would require several different one week periods away from my children. She thought they would give me at least as much radioactive iodine as last year, but she wanted to meet with me on Tuesday for a history and physical exam. I mentioned that the pain in my collarbone was back.

She called me back later after consulting with a fellow oncologist who she felt was better qualified to figure my dose. They decided I should have a dose of 200mCi (millecuries).

Tuesday morning while I was a t a Halloween party for the kids and their homeschooling friends, I kept fielding calls, scheduling then rescheduling visits to doctors and radiology.

We finished our party. They had a Fear Factor game for the older kids - the spun a wheel to select disgusting pantry items to concoct a shake for the other team. The boys - only 2 drank the foul mixtures and then lost all their stomach contents into the nearest trash cans and proceeded to flush their mouths with several glasses of water. Spielberg did not see the sense in this game and only watched. He carved a pumpkin which is sitting on our porch next tot he one he drew on.

The girls did a  cake walk and listened to a story. They colored pictures and dipped caramel apples. They finished it off with a parade. I took Spielberg back to school and the girls home with me.

My aunt M said she could stay so I went to a 1:30 appointment with Dr. C (Dr. I's partner). When I got there they asked if I would step on the scale. I asked if I had to - she said I could refuse, so I did. Dr. Clark said that he was concerned that there might be more enlarged lymph nodes that would have to come out before I could receive treatment, he wanted me to have a repeat MRI and a surgical consult. The soonest MRI was this coming Saturday. I could meet with the surgeon the following Monday. If he does need to operate, it wouldn't be until the third Wednesday.

In the meantime, I had rearranged Tyler's surgery follow-up appointment to be at the end of the month. The doctor does not want an MRI of Ty's tumor. I am a bit frustrated by this, but we'll just take it a step at a time.

I had my ultrasound today at 10 AM. I happened to see "Nothing Observed" recorded on her computer screen. She sure snapped a lot of pictures for observing nothing. It looks like the soonest I can be admitted to the hospital is next Wednesday. It's ironic, I thought I'd be in middle of my "hot zone" but just one more day and I probably could have kept Tyler's appointment. Sometimes I am too efficient.

The kids listened to each other's stories tonight: "Heidi" and "Children of the Lamp".

Spielberg filled 2 - 1 gallon bags with his candy haul. He dressed as a hobo again and carried a cardboard sign that said "Will work for candy." Michelle wore a princess dress and Nicole was a cat.

Tuesday was the first day that I was really tired and today was even worse. My allergy to iodine keeps me popping the Benadryl. I am not looking forward to swallowing the big dose next week. I hate losing my taste buds, having my face swell from inflamed salivary glands, the gray hairs and spider veins that will inevitably pop out. The worst is the body rash and pressure sensitivity from the iodine allergy.

The girls took a bubble bath - there were so many bubbles in comparison with water, the tub was overflowing with them.

We also had  our first auction on Monday, The girls had a wonderful time, but Spielberg had expected a preview of Christmas and was quite disappointed. He only bid on two things. Michelle was very sweet and let Nicole win the Littlest Pet Shop animals even though she loves them and had more than enough money to win it for herself. She also shared her press-on fingernails with Nicole. They are all so cute.

We have packed so much into these last 3 days, it's no wonder I'm tired. W e also had a tea party last week. We have enjoyed each other.

I am contemplating sending Ty in for 1/2 day school days until Thanksgiving, but am very nervous about it.

Sunday, February 13, 2011

Friday, October 27, 2006

My doctor talked me into getting my thyroid scan done. I was close enough (halfway) to being ready that she felt another week of no meds would get me there.

I very nearly hit a large red fox on the way to my parents' home. Once there, I asked my dad for a father's blessing. We had a nice talk and he gave me a rather lengthy blessing.

He blessed me to continue being analytical, to realize that this is a time to make memories - good ones. To be there for my children and make it my priority to help B (my husband) in relating with and building strong relationships with our children (that it would be important should I be "called home" sooner than he is), to coach him on how to help me by being sweet and getting his attention and asking for his help, to help others but to let them do the work. He also said that as my father he wished to bless me that my body was healed, but that may not be Heavenly Father's plan for me.

Before that blessing, I knew I still had cancer. The blessing really cemented it for me and the scan became just a technicality to confirm it. 

On Thursday of this week I went in and took my radioactive scan dose and then today went in and had my scan. When I was done, they told me the results would be up in 30 minutes and to call my doctor for them. My mom met me at the hospital and we went out for lunch at the Italian Place. I called the doctor's office only to be told that nobody would be in until Monday. What?!

So Plan B - I called the cancer doctor from last year. They looked it up and said there weren't any results but that I could call the hospital and see if I could pick them up.

I went and picked them up. It was just as I thought. Here is an excerpt:
 "There is abnormal nuclide accumulation in the vicinity of the thyroid, lower than the chin marker and above the suprasternal notch marker. No abnormal activity is seen elsewhere on the whole body images."

I will Check with Dr. M on Monday and see what she suggests. I think I will ask for a PET Scan - might as well make certain it is not in those pesky lymph nodes or the bone (which I think it is) while we're at it. If I only have to be isolated 3 or 4 days, I will probably continue to keep Tyler home until I am sufficiently non-radioactive to be able to go to the children's hospital should the need arise.

I am concerned that if I send him to school, he might accidentally get injured or receive trauma to his tumor and require more surgery or treatment and I wouldn't be able to be with him. I am probably just being paranoid or over protective, but I'm okay with that.

The school is sending his intervener to our house for 2 hours a day so they can keep a relationship going.

I find it ironic that just over a month ago, I had a meltdown while I was driving about by myself and I told God, "I can't do this anymore."

I was referring to the massive amounts of Thyroid Stimulating Hormone, but considering everything that has happened since then I'd be okay with going back to handling extra hormones. The moral: do not tell God what you can't do, He knows better.

A bright spot, I think I may have found a surgeon who would be willing to operate on Tyler's tumor. It is Dr. Khatri at UC Davis in Sacramento, California. Maybe we will all go together on an RV trip - maybe not Gracie though, she doesn't travel well. A car is a small place for a loud baby.

Last Friday, B and Spielberg attended a Scout camp out together. I attended Michelle's Mother/Daughter activity for Achievement Days. It was a talent show, and I should mention that she played "Peter, Peter Pumpkin Eater" perfectly. She got a bit embarrassed when she was done and turned a very bright red. Piano recitals will do wonders for her nerves.

Noreen helped me to make 28 -30 meals for the freezer-for a rainy day or when Tyler has his next surgery. they have all been good so far and it was such a wonderful service. They are in a rental home for the next month and didn't take their washer and dryer, so she also did her laundry while she was here.

Lastly, I am disappointed that I am still dealing with cancer - it stinks, but what is even worse is Tyler's situation - I just don't know what to do and neither does B~.

October 16, 2006

We went through three different plans within 30 minutes this morning.  First, Neurosurgery came in and said they would be  speaking with Surgery and Pathology and that they wanted an MRI - they made it sound like we'd be here until Thursday.

Next, General Surgery - Dr. S came in and said he didn't want to do anything for a month and he didn't want an MRI. He wants to try and leave the tumor in because otherwise he would have to remove Ty's entire lower right belly wall. It may continue to spread, but he wants to watch it. He said we could go home today.

Then the head of Neurosurgery and Rehab came in. They both wanted an MRI and actually scheduled it. They switched one of his medications and decided to do Botox injections while we're here. Since we were sedating him they wanted us to stay until tomorrow, put in another IV, and no food for him.

Ten minutes later, the nurse practitioner came in and said that after conferring with General Surgery, they would not be ordering an MRI. There is currently too much inflammation for an MRI to be helpful. They just wanted us to wait until the final pathology had been read this afternoon. Once that's in, we are free to go. We just need to have to staples removed on Thursday and a consult in a month with General Surgery.

I have taken some things down to the car in preparation for going home. The pen I am using is wonderful. It is a Zebra F-402 (note to self: found at Smith's).

Sunday, October 15, 2006

He was fine - except that it still looks like the pump is in there. It got really large. They put 15 staples in the incision, it looks like a sewed up clown's mouth. He started going through withdrawal from the baclofen a day later. He had high blood pressure, but otherwise was fine. They didn't have any extra rooms on the floor, so he stayed an extra day in ICU.

Today is Sunday, my mom came up and stayed with Ty all day so I could go home and see the kids. She also had all the girls stay with her the past two nights. Wendy has been with the kids during the day.

Tyler had one more surgery to remove the leftover catheter tubing for the pump. He did well, but they used tape on his face (and this after the tech had assured me he'd relay the info about his tape allergy to the anesthesiologist) and he had an allergic reaction. His face swelled right up, it was awful. We have him on 20 mg of baclofen four times a day. His arms and legs are very tight.

On Saturday they came in and said he has a desmoid tumor. It is benign, but because it is so large (10 cm x 10 cm x 12 cm) it is putting pressure on his organs. We will be discussing possible treatment options tomorrow. Sometimes they remove it, but the odds of recurrence are really high (70%) if they don't get all of it.

They can also do radiation or chemotherapy. I'm not sure about chemo. His tumor is quite embedded in the muscle, so I'm not sure if removal is even an option. His stomach measures 58.5 cm (23 inches) around.

This surgery was the first time I realized how uncertain life is and how quickly things can change. I decided to make a list of people I would want contacted if anything should happen to him. It is best to do that sort of thing when there is no danger of it happening soon. I think that a crisis is the worst time to have to plan anything. Now that I've made a list, I'll tuck it away in the Fire Box and hope that it won't be necessary for several more years.

My overall impression is that everything is going to be fine and that this is just a small bump in the road. He has so much to do here - he can't go anywhere just yet.