Wednesday, March 02, 2005

Kids Have A Surgery Date

Yesterday we made the trip up to Atlanta to see a pediatric surgeon about doing Big B and Sis's thyroidectomies. The trip went quickly, the kids all behaved on the way up, and we even arrived over an hour early. The only bad parts were that we had to wait over an hour in the waiting room and then over half an hour in the room itself. The doctor DID apologize though and said they were running behind.

The doctor, Dr. KG is a VERY nice man. It was so nice to FINALLY find a nice, intelligent, and caring doctor. He knew all about MEN2a and took the time to explain it in detail to the kids in terms they may understand better. One thing I really liked is his way of explaining MEN syndromes to them. He said it is "Multiple (meaning many or several) Endocrine (meaning your endocrine system *named some organs*) Neoplasia (which is cancer) so that means that it is a disorder that causes several cancers in glands in your endocrine system". He asked both kids if they had questions and then answered them and spent well over half an hour with us. He assumed from the beginning that I knew everything he talked about and would look at me every so often to make sure and once I nodded my head he would continue talking. He explained the surgery to them, what happens after, and why we are doing this. Just all around tried to make them comfortable and I greatly appreciated that.

I asked about having the surgeries on the same day and he said he would rather have them on two seperate days because then he is fresh for each surgery. I also asked about doing them over Spring Break so they wouldn't miss any school and when we went to schedule the surgeries we found that there is only one day that week he will be around for surgeries so he decided he will do both the same day so they don't have to wait. He was all about doing what was best for US. Kudos to Dr. L for the referral!

As we were scheduling he asked me "How are YOU feeling?". These days I wonder if doctors ask me that because I look like hell or what. LOL. I told him I'm doing alright just trying to get the right steriod dosage down. He told me to take care of myself and that if I have any questions feel free to email him. Again, very nice caring man. Two thumbs up from me to Dr. G.

So Big B and Sis are scheduled for surgery at Egleston Children's Hospital starting at 7:30am on March 30th. We decided Sise will go first because she is having some anxiety problems over this and I don't want her having to wait until Big B is done. So her surgery will start at 7:30 and last about 3-4 hours. When her's is done then Big B's will start. The kids will stay in the hospital overnight so their calcium levels can be checked (to make sure the parathyroid weren't damaged) and if all is well they will be released early the next day. Of course, I don't think I will be leaving the hospital at all the whole time and I'm going to be a wreck. I have to talk to my endo ahead of time about how much I should compensate on my meds to handle the stress from the day. I HATE that I can't even be stressed like a normal person. :( I don't want to have problems though and not be able to be there for my kids when they need me most.

They will take out the entire thyroid and also 5 or 6 lymph nodes as well. The lymph nodes are a "better safe than sorry" type deal. They will also be checking the parathyroid and if any of them (there are four) looks to be diseased then he said they will remove them and reimplant one in a muscle pocket in their neck (this part was new to me because I hadn't heard of that). We would rather take out the lymph nodes and find out the cancer hasn't spread there than leave them in and risk cancer spreading to their bodies later on. What we're hoping for is when they biopsy the thyroid (after taking it out) there won't be any cancer yet. That would be a VERY good thing for my children and mean one less cancer they have to worry about later in life. If the cancer HAS started but hasn't made it to the lymph nodes we remove then that is a good thing too because it means we caught it in time and my little darlings will be cancer SURVIVORS.

After the surgery they will be on Synthroid for the rest of their lives and we will of course have to adjust where needed to get them at the level they need. Hopefully that will go smoothly and we'll never have any problems with their meds.

So we have 28 days now until the surgery. That's 28 days for mama to cry in private, worry, soothe them, and try to prepare. I just hate all this so much. My babies shouldn't have to be getting cut open AT ALL. Of course, I'll keep all my fears to myself because that's my job and they deserve to have a mama who at least on the outside looks like she's perfectly okay with all this. The more solid I am the easier it will be on them.

On March 15th we will be meeting the new pediatrician/family practitioner and hopefully that will turn out well too. I'd like to get the kids set up all the way around with really good doctors. Next week I will be gone for my scan and liver biopsy and will have an update on that. Hopefully it will only take a week to get the results from that back so I can quit worrying. I'm scared to death of what that scan will find but I know it's out of my hands at this point. Even if the cancer is in several more places than we already know I can't change that so no sense worrying myself sick over it. I'll just take it as it comes just like I have been for 5 months.


Anonymous said...

Just wanted you to know that I read your latest. I hope all the best for the kids. The doc sounds great btw, Im sure that made you feel a little better.Im thinking about all of you.
Love you, Kaz

Teresa Lanza said...

I also have carcinoid. Dr. Kvols is one of the few experts and you are in good hands with him. The Carcinoid Cancer Foundation is the best site for information: There is a NET/Carcinoid conference in Phila in Sept. that may interest you. There are several on-line carcinoid support groups with NET & MEN members- info at

Jo said...

Thank you for the info, Theresa. It seems now they are saying I'm chemically testing negative for a carcinoid so we're back to square one again. :( I will be saving the infor and website you posted though since we never know with the medical profession eh? ;) Take care of yourself and thank you for commenting.

Kaz- love ya as always girlie.