Wednesday, April 20, 2005

Well I emailed Dr. G (the kids' surgeon) and asked him about the kids' parathyroid being removed. He emailed me back and this is what he said...

"Sorry for the misunderstanding. The goal of the surgery is to remove all the thyroid gland. Sometimes to achieve this, we need to shave some of the parathyroid gland off thyroid gland. As a result, the pathologist may see parathyroid tissue in the specimen. That usually tells us that we have removed enough of the thyoid. I know that we had parathyroid tissue left in both Lachelle and Bret at the time that we finished the operation. However, sometimes manipulation of the parathyroids leave a temporary period of hypoparathyroidism (needing calcium)."

So in other words, both kids still have all their parathyroids they just had some of the tissue shaved off in order to get all of the thyroid tissue because if we had left ANY of the thyroid tissue the medullary cancer could come back later on. This news I'm okay with.

Big B has been put on Calcitrol now which I guess is a Vitamin D type supplement to help his body absorb calcium better in hopes of helping his HOPEFULLY temporary hypoparathyroid problem. We'll keep our fingers crossed.

Big B's scar is healing well and all the steristrips have come off. Personally I think he pulled some off but he says he didn't sooooooooo... Sis's strips are still on and I've been trying to wet them so they loosen up some. Her voice now sounds like a frog on helium. It would be funny if it wasn't so serious. I just hope in the end she gets her voice back because this is just so hard. Both kids are also on the Tums/calcium until their next bloodwork which in in May.

As for my surgery, with the way things are going I don't know if I'm going to have it done in May. So much is going on here at home and with my body/meds that I'm just not feeling comfortable with it. A part of me says just get it done so we can go on with things but another part of me is scared just how screwed up I'm going to be after all this. We already can't get my steriods where they are suppose to be without me getting sick and feeling like hell. Do I really want to add another medication in the mix? On top of that, another medication that if it's not working right has some of the same side effects that my steriods have so I may not even know when things are going back.

I just wish I'd wake up from this nightmare. I don't want to play anymore. I want a real life back and I just want all this MEN2a and cancer BS to end.

Wednesday, April 13, 2005

THIS has me a wreck this afternoon...

"The second operation which is associated with postoperative hypoparathyroidism is total thyroidectomy. This operation is performed for a number of reasons, but because of the close relationship that the thyroid and parathyroid have to one another (including sharing the same blood supply) the parathyroid glands can be injured or removed. This is very rare and occurs in much less than 1% of thyroid operations. "

BOTH of my children are in that 1%. BOTH of my children have low calcium levels meaning that their perfectly NORMAL working parathyroids before this surgery that didn't have ANY disease during the surgery that were REMOVED FOR NO REASON WHATSOEVER during their surgeries (one left in Big B and two left in Sis) were doing just fine and NOW? NOW? My kids have to be on calcium supplements and NOW we have to worry about them being on lifelong supplements if things don't look better in 5 weeks.

1%.... wtf? What are the odds? I mean really? What did I do to piss off some higher ups THAT much? I'm so sick of me and my kids being rare this and rare that. RARE genetic disorder. RARE thyroid cancer. RARE to have all three cancers. RARE 1% chance of this. RARE problems from that.

I want my life back. I want the kicks in the stomach to stop. I want to come here and NOT wonder whether or not I should post the newest screwed up crap because it all just sounds so unreal and screwed up even to me. I want to just come here and post "Hey today we had a normal test result/day and did nothing. That was the highlight of my day". Seriously, I do.

Yesterday the kids' pathology results came back- BOTH of them had medullary cancer. It was THANKFULLY contained to their thyroid and hadn't spread to the lymph nodes so we got it all. I still break down in tears when I think about how close we came. So damn close. I don't know how mamas whose children have full blown cancer do it. I'm just not that strong and they amaze me.

Then we went to the endocrinologist and had all three of us checked out. She read me the pathology on the kids and come to find out they took two of Sis's parathyroid (everyone has four sometimes even five) and THREE of Big B's. NOBODY TOLD ME THIS!!! After their surgeries the surgeon told me that they didn't have to touch the kids' parathyroid and left them alone!!! HE LIED TO ME!!!

If they only left one in Big B then they should have moved it to his forearm that way if anything happens he won't have to have his neck cut again. Instead they have set him up for future neck surgeries.

Today I got the results of their lab tests from yesterday back (I sooooooo need to have them use the lab in town more often! I've never gotten results that fast before!) and BOTH kids are low on calcium and need more supplements.

Oh and just for extra kicks..... I'm developing Cushing's Syndrome and have to have a CT scan on Monday to check for internal bleeding or excessive scar tissue on my kidneys from the adrenalectomy.

Sunday, April 10, 2005

My Poor Little Girl

Since the kids' thyroidectomies Sis hasn't had a voice. The surgeon said he checked her vocal cords after the surgery and said everything was fine. The day after the surgery she had a little bit of a raspy voice that made us think she was going to be okay. For the last week and a half though she can barely talk above a whisper. I've started getting worried.

I can't get ahold of the surgeon, any of his associates, or my endocrinologist so I finally emailed MY surgeon and asked him his thoughts. This is the email I got back...

"From your description, it sounds like she has an injury to the recurrent laryngeal nerve. It is likely temporary, but may require 6 mos or more for recovery. Without adequate cord function on one side, the other vocal cord muscles fatigue quickly. Early on, the voice is husky or raspy then becomes breathy with considerable effort to speak. As the cord muscles fatigue, the voice quality becomes a soft whisper. If the injury is partial, the voice is usually a little better in the morning, but quickly deteriorates. Voice rest is important to not over fatigue the voice. This usually allows the swelling of the cord to decrease and have some voice in "reserve" Until the nerve recovers (6 weeks to 6 mos on average) she will have a weak, hoarse voice."

WHAT THE BLOODY HELL??!!! This was suppose to be a simple three hour procedure that turned into a 5 hour nightmare followed by 2 hours in recovery because she wouldn't wake up followed by 2 days of pain because they had her head an an awkward position followed by finding out that BOTH kids had BURNS on their backs from the electrodes and now THIS!!!

My poor daughter. :( I told her everything would be okay. I told her this was no big deal. She trusted me and this is what she got. This isn't how this was suppose to go.

Thursday, April 07, 2005

Finally Talked To Dr. BC About Results

I talked to the doctor earlier and the final word is that the liver biopsy DID come back negative meaning there are no medullary TUMORS in my liver. The Octreotide scan showed that the tumor in my small intestine isn't medullary either. So THAT is good news and I'm very happy with that.

He confirmed though that I have medullary cancer "seeds" throughout my body meaning this will be a lifelong battle. We will be testing me regularly and watching for WHEN new tumors form. Most likely places for them to form will be the lungs, liver, bones/spine, and brain.

My next surgery date is May 10th. I will travel to Tampa on May 9th for my pre-op and then start the operation on the 10th. What we will be doing this time is the total thyroidectomy (removing ALL of the thyroid and the tumors there), a selective neck dissection (meaning we will remove all lymph nodes that LOOK diseased as well as the ones directly around the thyroid) and could remove upwards of 70 lymph nodes, and also we will remove ALL of my parathyroid (here is a picture for you...). We will take one of the parathyroids that isn't diseased and reimplant it in my forearm. This is so that if it fails later they don't have to go back in my throat and do surgery again.

The funny thing though is that Dr BC said we will be doing SEVERAL neck surgeries on me to remove more lymph nodes in the future "as they become cancerous". So we're not doing "if" but "when". Most times they try to do only one surgery on your neck because the more they do the more risk there is to the patient. We don't have a choice though on this.

The sucky parts are that my 5 year anniversary is on May 6th and Mother's Day is on the 8th. LOL. These surgeries and scans seem to be sucking all the fun out of my year. At least this time I can be with my family on those days and hopefully have something nice (mentally) to take with me into the OR.

I'm okay with this. I figure that we thought the tumors were medullary already so I had already accepted that. So knowing that it has spread and will show up later is no surprise and I'm not worried about it. Shit happens and I had already accepted that it happened to me. This way I just have more time and that is a VERY good thing. I won't lie and say I'm not scared because medullary cancer is known for showing up as lung, brain, or bone mets mostly but I won't think of that right now.

So that's the next step. After that we will figure out what is going on with that tumor in my small intestine because Dr BC doesn't know WHAT it is. That's a little scary as well- not knowing what this other tumor is and if it's something to be worried about.

One day and surgery at a time. I guess that's the best we can do.

Tuesday, April 05, 2005

Update On The Film Crew That Never Showed

As I had said, a film crew from the hospital was suppose to follow us around the day of the kids' surgeries. Not only did they never bother to show up but also never bothered calling us to let us know they weren't showing up.

The only reason this pisses me off is because I fought with my teenager over this and spent time preparing my daughter for it. It was added stress my family didn't need just to be blown off and not shown any damn decency. I think it's rude and ignorant that they didn't at least call to say they decided not to do it and I have tried calling the lady who was setting it up but she's basically not taking my calls.

People like this suck. I don't care about not being filmed especially since the whole day turned out so awful but why do people not have the decency and manners anymore to at least think of others?

So I called the chic (Samantha) and she said that the surgeon was suppose to tell us what was going on and she "thought" he was in constant communication with us. She said that what happened was because it was such short notice (almost TWO weeks is really short notice I guess) that she couldn't find anyone in the media to cover it. Yeah okay tell me another one lady. In other words they didn't feel it was important enough to cover or would get enough ratings so they dropped it.

I told her that I didn't appreciate no one telling us that it was off and that it added stress my family didn't need at the time. I told her that even if she WAS in constant contact with the Doctor and HE dropped the ball you would think SHE would call at some point considering SHE was the one who started all this. She got a little snotty with me and went back to "well I'm sorry it ended this way we were under the impression that Dr. G told you" blah blah blah. I told her in the future CALL people because this was just crap.

So anyway- that's what happened. It wasn't important enough and obviously WE weren't important enough to deserve even so much as a call telling us it was off.

I WILL be adding that to my letter I am sending about the entire ordeal.

Sunday, April 03, 2005

Bret and Chelle's Thyroidectomies

We left for Atlanta around 10am on Tuesday, March 29th so that we could get to town fairly early and get settled into the Ronald McDonald House. I was also suppose to meet up with some of the ladies from Amity but thanks to traffic on the way up we ended up not getting to RMH until 2pm so I had to miss out. :( It took about an hour to get checked in and get settled and then we decided that we would go have a nice dinner so the kids could have something nice the night before their surgeries.

After discussing it a little we settled on Papadeux's for dinner. We let the kids order what they wanted and Lil Man was even good during dinner. It was nice and relaxed and actually enjoyable for once. We even had a very good and nice waitress which was a change for us (our bad luck usually even runs to getting bad service or servers when we try to eat out somewhere). :)

We left there and headed back to RMH to relax and just spend time together. The kids and I hung out in the family/play room while Vinny talked on the phone most of the time. Big B played the old Super Nintendo that they had there, Sis made a friend and colored with her, and Lil Man ran around trying out EVERYTHING which meant Mommy was left to clean up after him constantly (especially since Daddy wasn't around to help). Around 8pm we headed to the kitchen for a quick snack for the kids and then up to our room. I took pictures of everyone, Sis had a meltdown, Lil Man didn't want to sleep, and finally we all settled in. Of course, there was no way I could possibly sleep so I just laid in bed until around 4am when I got up and got ready to go.

At 5am on the day of the surgery I got everyone else up and ready, took more pictures, and then we were off to the hospital because we had to be there by 6am to register at Day Surgery. We went to the wrong part of the hospital at first and had to totally backtrack and go a block down to the Children's Hospital but once we got there it was fairly easy to find Day Surgery. Got in there, added our names to the sheet, and then sat down to wait. The film crew was suppose to show up at 6:30 but never did (I'll fume about that one later on). We only had to wait about 10 minutes before we were called to register and then sent right back to a room. Nurses came in to get the kids stats and let us know how things would go and then Dr. G (the surgeon) came in and talked to us for a few minutes going over everything that was suppose to happen. He said it would take about 3 hours for each child and there shouldn't be any problems.

At about 7:15am they gave Sis some Vercet (not sure that is the right name) to calm her down before the surgery and then they came for her at 7:30am. I was able to go down to the first floor to the little room right outside the Operating Room and stay with her until they were ready. Unfortunately the medication never took affect and she was so scared and nervous. My heart was breaking the whole time as I was telling her that everything would be alright. Finally when they came for her at 7:45am she started crying and all I could do was tell her I love her and watch them wheel her through the doors. It took everything I had not to lose it and go running after her. All I could think was how this just wasn't fair and my kids shouldn't have to go through this. I got back on the elevator wiping the tears and went back up to the 6
th floor to wait for an update. An hour later they called us to let us know they were JUST STARTING the surgery. That was the first upset of the day.

They called us every hour for the first two hours to update us but then as the third hour came and went we heard nothing. I started to freak out and wonder what was going on. Finally around hour FIVE they called to tell us they had just moved her to the Recovery Room and were waiting for her to wake up. They also told me they had to use more anethesia than normal on her so she was having a hard time coming around. At this point I was a wreck!

Big B's surgery was suppose to start at 10:30am but of course it didn't. When 1:30pm rolled around and we still hadn't been told when he was going back I felt bad. The kid hadn't eaten since the previous evening and he was hungry. They had said no food or drink after midnight which from MY experience meant they wanted nothing in your stomach so you didn't throw up during surgery. Well what they DIDN'T tell us was that he also couldn't have gum, mints, hard candy etc. So I gave him a piece of gum hoping that it would help his stomach a little. Ten minutes later a nurse came into the room and asked how long he had been chewing the gum. I told her around 10 minutes and she said "Well this is probably going to postpone his surgery now because you're not suppose to do that!". I looked at her and said "POSTPONE?? You have GOT to be kidding me! Over a damn piece of GUM?!!".

So I was on the verge of completely breaking down and another nurse came in and explained some junk about saliva blah blah blah and I told her that no one had said anything about that because if they had I wouldn't have given him the gum and what the hell did they expect me to do when it is going on THREE hours past when the kid was suppose to be in surgery? She started to get ignorant with me and then told me that Big B's surgery was going to be postponed another two hours because of ten minutes of gum chewing. I started to tear up and almost totally lose it. I informed her that this was bullshit plain and simple. She left and then came back in a few minutes later saying that the anethesiologist said she isn't holding up surgery over a stupid piece of gum and that he would be fine. I fell in love with that anethesiologist right then and there. LOL.

So Big B was given his Vercet as well and around 3:30pm he was wheeled down to the OR. The meds took with him and I can honestly say it was one of the funniest experiences of my life! The boy was such a hoot!! It affected him so much that he was getting looks like "Oh that poor mentally handicapped boy has to have surgery". Seriously! If I ever wanted to know what my son would look/act like if he was stoned I now know. I wish I would have had the video camera. LMAO. So it was a little easier to let him go to the OR but again, as soon as he was out of my sight it was tears and back up to the 6th floor.

At this point we STILL didn't have Sis back yet and had been sent to the 4th floor to her room to wait for her. Luckily after about 20 minutes they finally brought my baby girl to me. Seeing her broke my heart. She was so pale and her face looked swollen. She also had bandages on her neck and she was so drugged that it hurt to look at her. :( After about half an hour she started to come around a LITTLE and just looked at me with this pained look in her eyes. She couldn't talk and was in alot of pain. She kept motioning that her head hurt. Come to find out they had put her head in some messed up position during the surgery and it would end up causing her alot of pain over the next few days.

We got the first call on Big B at 4:45pm and were informed that they had JUST started on him as well. Of course, I got upset again but tried to focus on Sis. Two hours later we received our second call on Big B and the lady said they were halfway done. An hour later we were told they were JUST NOW starting to take out the thyroid!!! Vin and I about went through the roof!! How could they have been halfway done with a thyroidectomy an hour earlier when they were just NOW touching the thyroid??? I was regretting having this done at Egleston more and more with each passing minute.

Add to that the fact that the few minutes here and there that Sis would wake up were filled with pain, her having NO voice at all, and then we find out that she has what looks like BURNS (welts) on her back from the electrodes during surgery which is also hurting her!! Her nurses were nice and quick to help her whenever they could though and that was probably the only thing that kept me from storming the OR and taking my kids out of there!

By the time all was said and done I got Big B back around 11pm that night. He came back to me looking so much better than Sis. He wasn't in any pain, he had a raspy voice, and he was awake. It made me hurt for Sis even more knowing that this was how she was suppose to come out too but hadn't.

They were unable to put the kids in a room together (and had even originally said they would be on different FLOORS until I told them they would seriously kill me if they did that because I would spend the next two days running between two floors and I just couldn't handle that) so they ended up across the hall from each other. While I was in Big B's room getting him settled in the nurses decided to try to get Sis up and going to the bathroom. Then my two children in different rooms across the hall from each other threw up at the EXACT same time! I could not believe it! LOL. After that Big B said HIS back hurt so I rolled him over and I'll be damned if he didn't have the exact same burn/welts that his sister had! I was beyond ticked off at this point and wanted blood! :(

Dr. G finally came in and said that both surgeries went fine just took longer than expected. He said they didn't have to touch the kids' parathyroids and had left them alone. We asked him about Sis's head pain and were just told it must have been how her neck was angled. When we asked about the welts on their backs he had no clue what it could be from. I was not a happy camper at this point and had to order pain meds for both of my kids.

We also asked about the whole halfway done/just starting on the thyroid thing and he said he had no clue why the nurse said that. He said around the time she said that he was finishing up and he was sorry we were made to worry like that. Then he proceeded to talk to Lil Man and tell him how cool his shoes were. LOL.

Big B fell asleep and settled in fairly easily. Sis was scared to death she was going to die in her sleep and basically refused to fall asleep. So I stayed up with her all night in her room while running back and forth checking on Big B well. Vin had Lil Man at the RMH trying to get some rest and give Lil Man a break from the hospital. I tried to get them to give Sis something to put her to sleep but their answer to that was to give her Morphine. So needless to say she didn't feel much pain but of course still didn't sleep because Morphine is NOT a sleep aid.

Oh and did I mention that in the middle of all this I started getting a wisdom tooth in? It was lovely let me tell you. Of course, I needed to be there for my kids so I couldn't just drug myself on pain meds so even if Sis had slept at all I still wouldn't have. :(

The next morning Sis was still having head pain, still not sleeping, on a liquid diet, and still had no voice at all which was really starting to worry me. Big B on the other hand was feeling fine, getting bored, eating a regular diet, and his voice was fine. Around 1pm the attending doctor said that Big B could be released. Big B hadn't been out of bed yet to walk or anything and when I asked what to do if he had pain I was told just give him some Tylenol when they had had him on Toradol the last 24 hours. Sis on the other hand was in no way shape or form ready to be released which really upset her. They released Big B and he walked across the hall and promptly got dizzy, weak in the knees, started hurting, and was feeling very sick. I called for them to get that doctor back up here and re-admit him ASAP!!

Of course, that doctor had left for the evening and another doctor had taken over. When we asked where HE was we were told that he was in the waiting area on his cell phone. Vin and I waited for about 10 minutes and then I had had enough so we walked over there, stood right in front of him, and when he looked at us I informed him that as soon as he was finished we needed to talk to him. Yes, I had hit bitch mode at this point due to incompetance, lack of sleep, and a wisdom tooth from hell!

He came back to the room with us, told us he had no clue why they would say just give him Tylenol and said he would prescribe Big B a pain medicine and then told us that we couldn't re-admit him. We would have to go down to the ER, let them check him over, and then if they decided he needed admitted he would be put on a whole other floor. He also said he couldn't believe they released Big B without letting him walk around first. A comment two of the nurses echoed as well.

The doctor informed us that everything Big B was feeling was normal and what we could do is have him stay the night in the room with Sis and I that way if he got worse or I decided to take him to the ER we would already be there. So after talking to Vin we decided to do that and Vin filled Big B's pain med so he could take one. I gave him half of what they prescribed having had the "joyous" experience of several pain meds by now and it was more than enough to make him feel better and put him out for the night. We also made them give Sis a benedryl/tylenol mix so she would actually sleep this time. She had tried to sleep during the day but nurses kept coming in and out of the room waking her up. She ended up only getting an hour long nap total.

Vin and Lil Man hung around for a bit so Lil Man could snuggle with me and get some love. They finally left to go to RMH and the rest of us settled in at the hospital. Luckily Sis slept decently that night (March 31st), Big B slept like a log, and I was even able to steal a few catnaps off and on. The next morning Big B felt fine and Sis STILL had no voice whatsoever. It was really starting to worry us but they assured us it would come back in a few days and let us finally check out in the early afternoon.

The same doctor that had released Big B came in to release Sis and I laid into him. I told him that I didn't appreciate him not checking to make sure my son had walked or saying just give him Tylenol. I also told him that he could go ahead and prescribe Sis something for pain now because there was no way she was going to get by on stinking Tylenol. I think he saw how close to snapping I was because he was more than happy to oblige. :)

Thus started our trip home. Vin wanted me to sleep the whole way home because he said I was starting to look ill myself but I stink at sleeping in the car/van so I kept him company instead. Both kids slept most of the way home and Lil Man watched movies and was so good. The whole time he was better than I had expected and I was so thankful! Everyone was so glad to finally be home so we could try to get back to SOMEWHAT normal.

Unfortunately, here it is four days later and Sis STILL has no voice. We are now being told it could take up to 6 MONTHS before her voice comes back and I am NOT happy at all! The whole experience was horrible and made so much worse by incompetance on so many levels. I would not recommend Children's Hospital at Egleston in Atlanta to ANYONE and we will not be returning there ever.