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.
Showing posts with label Chemo. Show all posts
Showing posts with label Chemo. Show all posts
Sunday, May 22, 2011
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.
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.
Sunday, May 1, 2011
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!
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!
Saturday, March 5, 2011
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.
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.
Sunday, February 20, 2011
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.
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.
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