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.
Sunday, February 27, 2011
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.
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.
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.
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.
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!
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.
LONG DAY and YET, SOMEHOW - NOT QUITE LONG ENOUGH.
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.
LONG DAY and YET, SOMEHOW - NOT QUITE LONG ENOUGH.
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.
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.
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.
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.
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!
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.
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~.
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).
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.
Saturday, February 12, 2011
Friday, October 13, 2006
What a week! Last Thursday, 10 days ago, Tyler's stomach started looking strange by his pump.* That usually means he has a distended bladder. On Sunday, we tried using a catheter (even though he'd been peeing well) to see if it would go back to normal. It didn't. On Monday I called and made an appointment for him to see the doctor on Thursday.
On Tuesday morning, it looked a bit worse, but after school it had really gotten bigger. It looked like there was a bubble under the skin of his tummy next to the pump. I called the doctor and told her it had nearly doubled. She told me to be sure to call Neurosurgery the next day and have him seen. That night it looked so bad that I called the Resident Wednesday morning at 8 AM. He told me to call and tell the office to work us in.
First, I went to his IEP and it lasted 3 hours. Then we went to Neurosurgery in the afternoon where they ordered xrays to make sure the tubing from Ty's baclofen pump was still inserted into the intrathecal space in his spine. When those came back, the Resident said the catheter tubing was intact and the swelling was probably due to some gas and stool in his bowel. He thought we ought to go home and come back if it got worse.
I didn't feel good about it. Something just didn't feel right so I went upstairs to see Doctor N. and get a second opinion. She took one look at it and said, "There's a mass here that is not air or stool." By this time it was 5:45 and she was due to go home, instead she ordered an ultrasound which showed a 5 cm mass under his pump. She then ordered a CT scan with contrast.
She had to leave right before the scan at 6:30 PM. When it was finished, the radiologist came out to the waiting room and called Dr. N. and handed the phone to me. She told me to go directly to the ER and ask for a surgical consult.
I checked in and the ER staff said it would be a 30 minute wait, but before I could even sit down they called us back. They told me they would decide if we needed a surgical consult or not. Next thing I knew the surgeon was there saying they were going to take it out. From the scans, it appeared that he had a blood clot the size of a softball. The plan was for them to take it out, stop the bleeding and put the pump back in. My husband came up in time to give Ty a blessing.
There were all kinds of risk involved: if the blood was inside the abdominal wall, it could cause blood/infection to be in where his organs are, also the pump might be wearing away an artery, and have to come out. Then the anesthetist said she wouldn't operate because he'd had barium within the last 5 hours (by now it was 10:45) and it could be fatal is he aspirated it.
The surgeons asked her to step out into the hall and when they came back in, she'd changed her position. They'd. said that this was an emergency situation and Ty couldn't wait the four hours the anesthetist felt was necessary. This is when I knew, despite how calm everyone was, that this was serious.
They got done around 1:30 or 2 AM. There was no blood clot. They opened him up, took out the pump and saw muscle with blood vessels and "meaty" looking tissue. They realized that somehow the pump was reacting with the muscle and the pump had to come out. They removed it, which meant that Ty had to go to Intensive Care because he was at risk for baclofen withdrawal. They took a biopsy of the mass and sewed him back up.
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