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 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 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.