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.