I called the surgeon's secretary today to tell her we would like to have the surgery done on Feb 13th, but that day had already been taken. There is an opening on the 25th, so I scheduled that. At this point, I hate to say anything is definite; it seems details continually keep changing on us. For now, though, we'll plan on the 25th.
At least he'll get to be home on his birthday!
*Edited to add that we have a pre-surgery consult with the surgeon on the 24th, so we will be leaving here on the 23rd.
Tuesday, January 20, 2009
Thursday, January 15, 2009
The Rest of the Story
Holy cow, this has been a crazy couple of months. We went from thinking Chance just had a cyst to it suddenly being an abnormal tumor to him almost definitely having cancer. Now we are back to where we were a month ago, right after we heard the biopsy came back abnormal and not knowing whether the nodule was malignant or benign.
We saw the endocrinologist at Mayo on Monday. He did not even hesitate to call this cancer. I asked if there weren't still a chance that it was not, and he was pretty discouraging. Based on the ultrasound report from Sioux Falls showing enlarged lymph nodes, he said it is cancer, no doubt in his mind. For him, it was just a matter of planning a course of treatment. He ordered a new set of bloodwork and a new ultrasound since they hadn't received anything from Sioux Falls or Pierre. (Apparently, you are supposed to bring those things with you. We had no idea. I guess we know for next time???)
Anyway, we went in on Tuesday to see the surgeon. He told us the lymph nodes were normal on this new ultrasound. He wanted a Mayo pathologist to look at the slides from Pierre to make sure those were read correctly. The Mayo pathologist concurred with the original report, agreeing that this is a follicular neoplasm. Because of the nature of a follicular nodule, the tissue surrounding it must be tested to know if it is cancerous or benign. So surgery is still needed. The left side of the thyroid will come out, along with the lump and the surrounding area will be tested.
We have been told all along that if this is cancer, thyroid cancer is slow-moving. That is why there is a lack of urgency for the doctors. Of course, we would have had the thing out a month ago if it were up to us, but I understand the need to gather all information possible since we do have the time.
So the surgery is tentatively scheduled for February 13th. Chance's and Jolie's birthday is the 15th, and we hate to have him in the hospital or recovering from surgery on his birthday. If we don't do it on the 13th, though, we have to wait until March because of the surgeon's schedule. We just want this over with, so we'll take the earliest possible date we can get. We'll just have to celebrate the birthdays early or late. Or both. Hopefully when we get back, we'll have some good news to celebrate, too.
For now, we're back to our normal routine for a month or so. I wish we had our answer now, but at least we have a great deal more hope for a positive outcome than we did when we left for Minnesota last week. Thank you again for everything you all have done. I'll update if I learn anything more.
We saw the endocrinologist at Mayo on Monday. He did not even hesitate to call this cancer. I asked if there weren't still a chance that it was not, and he was pretty discouraging. Based on the ultrasound report from Sioux Falls showing enlarged lymph nodes, he said it is cancer, no doubt in his mind. For him, it was just a matter of planning a course of treatment. He ordered a new set of bloodwork and a new ultrasound since they hadn't received anything from Sioux Falls or Pierre. (Apparently, you are supposed to bring those things with you. We had no idea. I guess we know for next time???)
Anyway, we went in on Tuesday to see the surgeon. He told us the lymph nodes were normal on this new ultrasound. He wanted a Mayo pathologist to look at the slides from Pierre to make sure those were read correctly. The Mayo pathologist concurred with the original report, agreeing that this is a follicular neoplasm. Because of the nature of a follicular nodule, the tissue surrounding it must be tested to know if it is cancerous or benign. So surgery is still needed. The left side of the thyroid will come out, along with the lump and the surrounding area will be tested.
We have been told all along that if this is cancer, thyroid cancer is slow-moving. That is why there is a lack of urgency for the doctors. Of course, we would have had the thing out a month ago if it were up to us, but I understand the need to gather all information possible since we do have the time.
So the surgery is tentatively scheduled for February 13th. Chance's and Jolie's birthday is the 15th, and we hate to have him in the hospital or recovering from surgery on his birthday. If we don't do it on the 13th, though, we have to wait until March because of the surgeon's schedule. We just want this over with, so we'll take the earliest possible date we can get. We'll just have to celebrate the birthdays early or late. Or both. Hopefully when we get back, we'll have some good news to celebrate, too.
For now, we're back to our normal routine for a month or so. I wish we had our answer now, but at least we have a great deal more hope for a positive outcome than we did when we left for Minnesota last week. Thank you again for everything you all have done. I'll update if I learn anything more.
Tuesday, January 13, 2009
Going Home
What a roller coaster.
I'll update more tomorrow, but I have about ten minutes before the library I'm at closes, so I'll make this brief. Today we met with the surgeon. We had another ultrasound done yesterday afternoon, and it showed that the lymph nodes were normal. So on the other u/s done in Sioux Falls, C's lymph nodes may have been swollen due to a viral infection or something else. This is great news.
They will take a look at the biopsy slides from the biopsy in Pierre. Since there seems to be no lymph involvement, though, we are back to having a good possibility that this may not be cancer. Either way, the surgeon will not be able to get him in until Feb., so we can go home right now.
I'll have more details when I get home, but at this point, we have a little more hope that this may be benign, and we are elated.
I'll update more tomorrow, but I have about ten minutes before the library I'm at closes, so I'll make this brief. Today we met with the surgeon. We had another ultrasound done yesterday afternoon, and it showed that the lymph nodes were normal. So on the other u/s done in Sioux Falls, C's lymph nodes may have been swollen due to a viral infection or something else. This is great news.
They will take a look at the biopsy slides from the biopsy in Pierre. Since there seems to be no lymph involvement, though, we are back to having a good possibility that this may not be cancer. Either way, the surgeon will not be able to get him in until Feb., so we can go home right now.
I'll have more details when I get home, but at this point, we have a little more hope that this may be benign, and we are elated.
Saturday, January 10, 2009
Thank You
I am overwhelmed. At the outpouring of support from our families, our friends, and our community. At the generosity of folks who barely know us. I will have a lot of individual thank-yous to write when we are done with this and one huge thank you to print in the Murdo Coyote. For now, I just want everyone to know that Jesse and I are so, so grateful to everybody. I don't know if we can express how thankful we are for the friends and family we have and the community we live in, but please know that we appreciate everything you all are doing for us so very much. I can't imagine going through this without you all behind us.
We'll be leaving in the morning for Minnesota. The weather looks good, so the roads should be clear. I will be in touch with a friend who will update whenever we learn anything.
Please pray for our boy.
We'll be leaving in the morning for Minnesota. The weather looks good, so the roads should be clear. I will be in touch with a friend who will update whenever we learn anything.
Please pray for our boy.
Thursday, January 8, 2009
There was good news...
I forgot to add that Chance did have a chest x-ray yesterday while we were in Sioux Falls. The doctor wanted to see if there was any evidence that it had metastasized to his lungs. His lungs were all clear, though. So we did have a bit of positive news.
Wednesday, January 7, 2009
Change of Plans
Well, we went to see the pediatric surgeon today. The ultrasound Chance had done last time showed something in his lymph nodes. While they can't know anything for sure until actual surgery, he said that after looking at the ultrasound, he believes this is most likely cancer.
None of the endocrinologists in the state have ever dealt with a case of pediatric thyroid cancer, so both this surgeon and the endocrinologist recommended we take C to the Mayo Clinic in Rochester, Minnesota. The surgeon said he could still do the surgery to remove the lump and check out the lymph nodes, but if it is cancer, we would still have to take him to Rochester for further treatment. He said it would be in C's best interest to have all aspects of his treatment done in one place so the doctors there can best coordinate his care.
So we have an appointment with an endocrinologist at Mayo on Monday morning and with a surgeon on Tuesday morning. We'll have to see what they say when we get there about a date for the actual surgery. Chance has a nasty cough right now which needs to clear up before any surgery. The doctors here seemed to think that we would probably be there until the surgery is performed, though, so it may be a long stay.
We came home today for a few days. We'll leave on Sunday for Rochester, which is about a six or seven hour drive. Jesse's mom will be extending her stay to go with us. I don't know what we would do without her.
It looks like this road will be a little longer than we expected.
None of the endocrinologists in the state have ever dealt with a case of pediatric thyroid cancer, so both this surgeon and the endocrinologist recommended we take C to the Mayo Clinic in Rochester, Minnesota. The surgeon said he could still do the surgery to remove the lump and check out the lymph nodes, but if it is cancer, we would still have to take him to Rochester for further treatment. He said it would be in C's best interest to have all aspects of his treatment done in one place so the doctors there can best coordinate his care.
So we have an appointment with an endocrinologist at Mayo on Monday morning and with a surgeon on Tuesday morning. We'll have to see what they say when we get there about a date for the actual surgery. Chance has a nasty cough right now which needs to clear up before any surgery. The doctors here seemed to think that we would probably be there until the surgery is performed, though, so it may be a long stay.
We came home today for a few days. We'll leave on Sunday for Rochester, which is about a six or seven hour drive. Jesse's mom will be extending her stay to go with us. I don't know what we would do without her.
It looks like this road will be a little longer than we expected.
Tuesday, January 6, 2009
Leaving Today
We are off to Sioux Falls this afternoon. I won't have computer access while down there, so I will be calling my friend Denise after the surgery on Thursday. She will update here.
Wish us luck!
Wish us luck!
Friday, January 2, 2009
Surgery Date
Chance's surgery will be January 8th, next Thursday. The surgery will be in Sioux Falls, which is about 3-1/2 hours from us. We have a consultation with the surgeon on Wednesday morning, so we will be leaving here Tuesday evening and staying in a hotel that night and Wednesday night.
There is a Ronald McDonald House and another place that accommodates families of hospital patients, but there is a four-person maximum for those. We will have all five of us, plus Jesse's mom, which is why we are staying at a hotel instead. After Chance is admitted, Jesse will stay in the room with him, and Grandma, the little kids, and I will be moving to the Ronald McDonald House or the family village for the night(s) he is recovering. The social worker from the hospital set up all the lodging for us, which was so helpful.
There is a Ronald McDonald House and another place that accommodates families of hospital patients, but there is a four-person maximum for those. We will have all five of us, plus Jesse's mom, which is why we are staying at a hotel instead. After Chance is admitted, Jesse will stay in the room with him, and Grandma, the little kids, and I will be moving to the Ronald McDonald House or the family village for the night(s) he is recovering. The social worker from the hospital set up all the lodging for us, which was so helpful.
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