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.
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