Brazil or Bust a Gut! Finally!

As I found myself being temporarily displaced at work, I began looking back through the posts. I was amazed (happily) to see that we have hit our First Year Anniversary of this blogging adventure!! I also noted, that we are nearly at the two-year anniversary of Chey's diagnosis. WOW, 23 posts! I keep pinching myself because I never knew if I could really do this. So, THANK YOU, Shelby and the Good Lord.

Well, for those constant readers that have stuck by me through my huge learning curve, I've been teasing you a little with Brazil or Bust a Gut. Today, I will tell you my recollection. For those new readers, I have been sharing our journey after our teenage daughter was diagnosed with papillary thyroid cancer that was discovered accidentally on a CT scan of her neck following a softball injury. At this point in the story, Cheyenne had just had her thyroid and one lymph node removed and we are at Texas Children's Hospital waiting for discharge--so, the story continues.

After Cheyenne had recovered from the bath ordeal (LOL), she was still a bit grumpy, but she was much better than she had been as she asked, "Mom, how much longer 'till we can go?"

"I'm not sure. We have to wait until the doctor comes in and discharges you." I had answered.

"I'm ready to get out of here and get some real sleep!" She touted.

"I know, I am too." I said in complete agreement.

My sister, Terri, had completely surprised us by coming down from Kansas City the morning of Chey's surgery. Ed (my spousal unit), myself and Chey spent this waiting time chit chatting. Terri, on the other hand, was itching to take us out. She had been on her phone searching here and there for something special. "Hey, have you guys ever eaten at a Brazilian Steakhouse?" She asked.

We answered, "No."

"Oh my gosh, we have got to find one. You guys will love it!"

I could tell Cheyenne wasn't too keen on the idea, she just wanted some uninterrupted sleep time. I tried to casually dissuade Terri, but she really wanted to take us out. The discharge orders were given and we finally released. By that time, we adults were pretty hungry! Chey still seemed like she would rather go on back to the Ronald McDonald House but she never said a word.

Terri had found the place she was looking for, Figo de Chao Brazilian Steakhouse. She explained that it was an upscale Brazilian chain with an all you can eat, meat-carved at your table, experience.

"I hope this is like the one we have at home. They have an amazing salad bar with every side you could imagine." She was just gushing. "They will give you a little card that's red on one side, and green on the other. When you want meat, turn up the green side and they will bring the meat to the table and cut the serving for you. When you don't, just turn the red side up!"

I asked her, "What kinds of meats do they serve?"

She explained that there were usually several cuts of beef, pork, chicken and lamb, "But not sure of this chain."

Now I perked up at the mention of lamb. We had grown up in Iowa and we had lamb chops fairly often and I LOVE IT! Lamb is one of those meats you either love or hate, I've never really seen anyone in the middle. Doesn't bother me though, if you don't like it, that leaves more for me! The bad thing is, Cheyenne happens to love lamb also. Good thing she said all you can eat.

Ed followed Terri's directions and we arrived at the restaurant. I was a little worried that we were underdressed, it was very upscale! We hadn't planned on anything extravagant, all we had thought about was getting that cancer out of our daughter. Terri insisted that there would be people dressed as laid back as we were, she was right.

We went in and the décor was almost more Mediterranean to me. (Lol, not sure what Brazilian should look like.) There were loads of exposed, wooden beams and wines stored in mass. The tables were covered in pristine-white tablecloths and the waitstaff was dressed formally in black slacks with white dress shirts. Terri had stopped and spoken with the hostess as we were being seated.

Wow, Terri had not exaggerated at all! The salad bar was absolutely phenomenal! There was every side you could imagine. There was artichoke, asparagus, couscous, cream cheese grapes (Chey's fav), and olives of every kind. Add, mushrooms, cheeses, salads, prosciutto wraps, shrimp and items we had never seen before. (Personally, I would have been satisfied just with the salad bar.) After filling our plates, we ambled back to our table. The waiter came over and brought plantains and mashed potatoes served family style, in multi-serving bowls. Cheyenne had perked up, by this time, and I think the smells were winning over the fatigue battle and she seemed to be liking the experience.

Right behind this, the carvers came with huge skewers of meat! I really wasn't ready for meat yet, but "What the heck." I turned my card up, as did Ed and Terri, and the gut bust began. My goodness, they brought prime rib, steak, chicken, shrimp, pork and the most scrumptious lamb chops-one after another! Chey eventually turned her card up, as well. We tried a little bit of each meat produced. I was happily surprised, Cheyenne inhaled the lamb and a bit of the others. I had been worried she would not be able to eat. She and I both had multiple servings of the lamb, but Ed and Terri seemed to like the beef the best.

Finally, we were stuffed like ticks, and we turned those cards over and then they had the gall to ask about dessert! There was no way I could eat one more morsel, let alone a dessert, but Chey was game. She settled on some kind of chocolate fudge-filled molten brownie cake with ice cream on the side. When they brought it to the table, we discovered why Terri had spoken to the hostess. In bold red strawberry sauce, they had written "congratulations" along the perimeter of the plate. Terri had told them about Cheyenne's surgery and that we were celebrating her hospital release! It was really a sweet, sweet gesture.

We all sat there, a little shocked, as Cheyenne demolished that dessert. We finished up and slowly made it to the door. There is no way any of us could have moved quickly!

Next time, On To the Galleria,

XXOO Make Everyday Count

Bonnie

Please Stand By

In the midst of an office move at work I am having some technical difficulties with the next post. Please stand by!

XXOO Make Everyday Count
Bonnie

BRAZIL OR BUST (A GUT THAT IS) OR MAYBE NOT

 

Alright, we are going to fast forward here a little bit. I told you I am finding it extremely hard to deal with present day's issues while I'm re-canting the past. When I start to feel I have a handle on things, all those emotions flood over me and it's like we are there again. The emotional roller coaster has to many loop de loops, so we're going to intermingle time. Again, for new readers, I have been sharing my daughter's cancer journey after it's accidental (or God Thing) discovery after a softball injury in March of 2015. 

When Cheyenne had her last doctor's visit, six months ago or so, everything looked pretty good. She did have one lymph node that was enlarged but Dr. Athanassaki (our near famous endocrinologist) said we were going to keep an eye on it. "It's most likely reactive to a cold or allergies," she had told us. "Let's keep an eye on it." 

Our follow up was December 12th 2016.  In that six month span, Chey had found a second node and the primary one had gotten bigger. 

I remember when she found it, "Mom!  There is another one swollen! She had practically screamed.  "What do you think it means?"

I shrugged as I felt it for myself and said, "Um, we just need to let Dr. A know at the appointment and go from there."

"Well, I haven't had any allergies or mouth ulcers, so that's not it. It kinda bothers me," she snipped back.

"I know sweetie, but there isn't anything we can do until we go," I responded.

I actually put a call into the office and asked our new nurse, Jennifer if we needed to go ahead and schedule anything. In the past, with Alli, she had always been so proactive, and due to our traveling five hours to the appointment she scheduled as much as possible in one trip. Jennifer told me there wasn't anything scheduled...

So as usual, the fellow came in the room first, accompanied by Jennifer. This visit we had a very sweet, shy first year who is going to be an endocrinologist. She's from Korea and very soft spoken.  Most of you know, we are pretty outgoing individuals. Chey will say it's all me and that I'm crazy, but we both give lots of hugs and are a bit out there. I guess I just want them all to know how much they mean to us and words just can't convey the feeling. 

Jennifer was giggling as she said, "I warned her it's hugs, hugs, hugs." We all laughed, and hugged.

The fellow asked Chey to go over her history and then examined her. After the exam, Chey was sitting on the table. She said, "Mom I showed her the wrong one, this is the one that's bigger," as she palpated the node.

I responded, "It's okay, just show Dr. A when she comes in."

It wasn't very long until Dr. A and the girls came back in and we both jumped up and gave her a big hug. I noticed immediately that she had lost some weight and it made me wonder if she was alright. She was her usual eyes twinkling, smiling, jovial self. I don't know if jovial really fits because she has a very slight frame (even more so today.) Maybe I should say lively, maybe that fits better. Anyway, after we gave our hugs, I sat back down and Chey went back to the exam table. Dr. A sat down on her stool and said to Cheyenne, "So, tell me about these nodes."

Chey explained, "It's the one that was there before, but now it's bigger. There is also another one here." She put her finger on her neck.

Dr. A donned her gloves and began to examine Cheyenne. She turned to the fellow, "Did you notice these here?" The fellow had not.  "Come here and feel these."

Cheyenne's eyes were big as saucers, Dr. A was feeling under her jaw and down low on her neck, and she sat straight up on that table. I probably did the same in my chair. Dr. A said that they could all be reactive for one reason or another, tooth problems or allergies, etc. We both told her that Chey had been pretty healthy, just fatigued.  She had also gained a little weight. Chey also showed them her tattoo (you will hear all about it later) which lightened the mood.

Dr. A spoke at last, as she propped herself up against the exam table, "We are doing a new ultrasound here. It is for mapping of the thyroid and the lymph nodes in the neck. I would like Cheyenne to have one. They are very specialized, so we only do them once a week on Thursday."

She went on to explain that Jennifer would get everything scheduled and we gave goodbye hugs all around. Something was wrong though, she just was not herself and seemed to nearly run from the room.

Jennifer stayed, pulled up a chair and scooted over close to us. She had her schedule book out on her lap and she said, "Well, like Dr. A said, they only do this ultrasound on Thursday. Can you stay and do it tomorrow?"

Chey and I both blurted out "No way." Cheyenne continued, "I have a final tomorrow at 8 am, I can't miss it."

I knew there was no way in hades she was going to miss that final, she's a bit obsessive over her grades. After all the hell we went through with her high school, she was not going to let ANYTHING affect her schoolwork. For those of you who are unaware, we had a grievance with the Dublin ISD beginning in Chey's sophomore year of high school. In January 2015, the Commissioner of Education's final ruling came down in our favor. He had ruled that the school board must have a hearing on the merits of our case (DISD had declined to do so previously, saying we had filed untimely.) As of today, that hearing has not occurred. You can google our case (Texas Commissioner of Education DOCKET NO. 046-R10-02-2014 and select link Child b/n/f Parent v. Dublin Indep. Sch. Dist) if you're interested.

So, Jennifer called to the scheduler and set an appointment for January 12th. We were supposed to hang loose afterwards in case we needed to do anything further. Then she said, "Well, I do have something to tell you."

I asked, "Is she sick?" Meaning Dr. A.

"No, that's not it at all. She wants me to tell you about some changes coming up." Chey and I both sat up straighter in our chairs, this did not sound good at all. "The endocrine department will no longer be overseeing the thyroid cancer patients. All new patients will be seen in the Oncology Department.

"I hate politics in medicine!" I said angrily. "Ya'll have done too good of a job and they want your numbers!"

The main reason we had come to TCH was because of the Endocrine Thyroid Tumor Program and their rating. As a nurse and mother, I had researched endlessly. Thyroid Cancer by all accounts, should and is managed by the Endocrinologists-NOT Oncologists. I was mad as hell.

Jennifer did not respond, instead Cheyenne said, "Why would you change something that isn't broken. Ya'll have done a great job and I don't want someone else taking care of me, I will stay with Dr. A."

Jennifer told us that they were unsure, at the moment, what was going to happen to established patients but we would know when they did. We were all upset! No wonder Dr. A was visibly not herself, what a blow. 

"Well, when does the Family Board meet again?" I asked. "I will certainly give them our opinion on this subject."

I was invited, along with two others, to be the first family members on this board this past Fall. We haven't met again, but I still plan on talking about this change. Chey and I both feel this is definitely not in the best interest of the patients and decided that we will go to another facility, for future care, before changing to oncology.

With tears in our eyes, we gathered our belongings and headed to the check out counter. We were both in shock.

Next time, On With the Gut Bust!

XXOO Make Everyday Count

Bonnie

Recovery and Bathtub Comedy

I want to start of with an apology.  I feel as though I have let you, the reader, down and feel terrible for doing so. I have not posted since October. I have been overwhelmed with friends' diagnoses and an overbearing emotional detachment in our own situation. Well, I'm back! I have decided that I will begin including where we are now, with Chey's illness, so we can get to a current place in time. I believe it will keep my mind and emotions in a much better place. Hope you all are enlightened by, and possibly encouraged by the blog.

Well, we left off last time with Chey leaving the recovery room and being moved up to a room. 

Cheyenne was diagnosed with Papillary Thyroid Cancer on March 18th, 2015 and had surgery to remove her thyroid, on the following Good Friday!! Cheyenne was really out of it from the anesthesia and, to be honest, I think we were too! I know I felt exhausted and everyone else there, supporting us, had to be also. 

My sister Terri, had driven all night from Kansas City (SURPRISE!!) and had not rested yet. We all traipsed upstairs to the room. If you haven't ever been to Texas Children's Hospital, it's worth the drive just to look around the facilities. It's a world class hospital and is geared completely for the pediatric patient! (If you ever find yourself with some extra cash and are looking for a worthy recipient-TCH is your place.) When you walk down the halls there is art displayed everywhere and the majority of it has been done by patients at the hospital or by children that have donated to them. I find it truly amazing that other children take time to make someone else's misery a little easier to handle through this simple gesture.

As a nurse, I noticed all of the boards showing how much these people care about what they are doing. On any given hallway wall you will see notices of how long the staff has gone without incidence of preventable infections of one kind or another.  It is comforting for this parent, to know the nurses care so much about their charges that they are willing to put these stats out there for everyone to see.  From my medical background, not everyone is so forthright!!

When you come to the floor, you have to go through a screening and must be buzzed into the patient area. If you don't have clearance you will not be allowed to enter. I think it is a great system. Some of these children are extremely ill and their immune systems are very weak so you must be diligent. It is commendable that THC carries this safety issue as far as they do! The rooms are beautiful and spacious to boot. Chey's room had a window area that was the full length of the room and looked out over the medical district. There is a sofa that converts to a bed, (for me), plenty of closet space and a TV with DVD player.  The kiddos can watch regular TV or bring their favorite videos to watch.  Each room also has a private bathroom with a shower and tub.

Like I said, we were exhausted so Terrie and Ed had headed back to the Ronald McDonald House and I planned to tuck in on the sofa for the night. As you would expect, staff came in pretty frequently to check on Chey. They tapped her face, checked the compression leg wraps and they took blood samples often via a finger stick. For small children this is okay, but for my teenager - NO BUENO!  She was not happy with this because it made her finger so sore. She would have much rather had them draw it through the vein each time. Cheyenne slept pretty deeply in between visits, but I did not.  It absolutely had nothing to do with the hospital staff or noise level, I simply kept listening to make sure my child was breathing. For those who know me well, you can probably imagine me sitting in a ball, on that sofa, watching and getting up to tap her face myself! You betcha, I did it over and over and over again.

Morning came and Chey had a light breakfast. Ed and Terri brought mine and while they were en-route, Dr. Paul (another endocrinologist) along with one of the Residents came in to see Cheyenne.  Dr. Paul is a very tall and lanky fella.  He is a mustached-man with his salt and pepper hair swept to the side. There was a twinkle in his eyes and a crease between the brows. He also smiles most of the time. Chey was more awake, but still not herself, and was a little cranky. Now, I love my children very much, but they both have extremely dry (sometimes cutting) sense of humors. When Chey does it, it is very subtle but wicked and you just don't expect it AND when she is cranky - watch out! 

One of the things I love most about TCH, is the way the doctors are able to keep the atmosphere very relaxed. Dr. Paul is no exception, and he has quite a sense of humor himself! Anyway, Chey and Dr. Paul were bantering back and forth about her truck (a '68 Chevy) and Ag things. Dr. Paul asked her something, for the life of me I can't remember, and BAM! She nailed him. The Resident covered his mouth and cracked up, so did I. Dr. Paul never skipped a beat, he drew his imaginary sword and slashed it through the air. We all laughed so hard. Well, everyone but Chey, that is. She just sat there with a little half grin on her face, knowing she had gotten him! 

I love this place like no other, they make our troubles bearable!

After the bantering was completed, they examined Chey and gave us a run down of the plan. As you can imagine, Cheyenne was extremely tired and flat worn out, but she was restless and ready to go home. After undergoing surgery, being poked and prodded, and everything else she had gone through over the last two days - Cheyenne wanted a bath!

Here in America, we take a lot of things for granted. Sometimes it takes a shock to wake us up and realize how really lucky we are to live in this great country and have access to the things we do.  Many of these things are just a given and you don't give a second thought to not having them. Not so true in other parts of the world. Our nurse, on this shift, was from the Caribbean. She was an RN and seemed very knowledgeable about her duties.  She smiled a lot and seemed genuinely concerned about my daughter's welfare but, then we came to the tub....

When the nurse came in checking on Chey, she bent over and was tapping Chey's cheek and I asked, "Do you think it would be okay for her to take a bath?"

She looked at me as she cocked her head to the side and said, "What's a bath?"

I just looked at her dismayed, very briefly, and responded, "You know, in the bathtub." She still didn't seem to comprehend what I was asking. 

Cheyenne looked at me, her eyes wide with wonder and maybe a little terror too. She certainly was wondering what I was going to say.

I tried to explain.  "You know, in the tub. You run water in it and then splash water up on you and bathe, like a shower but sitting down in the tub."

She didn't say anything and turned and left. I know my face was turning red. I did not want to embarrass her or hurt her feelings but I was afraid I had.

My sister looked at us and said, "You've got to be kidding me, she doesn't know what a bath is?" 

And so began our discussion about how other places do not have what we consider basics and how so many things are totally foreign to them. I had gone to Jamaica in my early 20's and on excursions into the countryside, I saw the squalor so many native people lived in. Many of the homes were just little shacks and I don't think they, individually, had running water. Even at that age it just broke my heart and I was much more grateful for what I had.

Having said that, we were all a bit amazed that with her education level she still did not know what a bath was. The only thing we could imagine was that she was envisioning a bed bath, which would have been extremely awkward for my kiddo. After a while, when she hadn't returned, I did what I do and ran a bath. Cheyenne was still pretty wobbly, so I assisted her to the bathroom and closed the door.  I helped her get undressed and into the tub. 

She looked at me as I sat down on the edge of the toilet and said, "Okay, you can leave now!"

Of course, I didn't.  "Are you nuts?  I can't leave you in here alone when you're halfway to the moon." 

She rolled those pretty blues at me but gave up the protest.  It ended up that she really did need me.  She was sore and very worried about getting any water on her incision.  I enjoyed the heck out of it!  The memories of bathing my babies came back in a rush and it was really hard to contain them and not bust out bawling. I just kept talking to her and kept the tears at bay. We hurried along and even so, she was shivering. I helped her out of the tub and swathed her in towels and she finally got to get into her own jammies.

Eventually, the nurse did come back in and told us a bath would be fine. We all just looked at each other, smiled, and said, "Thank you." 

I was relieved the group hadn't spilled the beans that we had already done it!  I know it must shock some people when I just take things into my own hands, but it is the only way I know how too.  If I see something that needs done, I just take care of it. We tidied up the room as Chey napped and waited to see about discharge.

Next time, Brazil or bust...

XXOO Make Everyday Count

Bonnie  

Cancer is a Monster

Cancer is a monster!

A monster that lurks in the deepest recesses of our minds. We always have a hidden fear that is never allowed to surface and we don't fully understand until the monster is knocking at the back door.

Once that monster becomes real no one can understand how you feel, and no one has the right to tell you how you feel, or how you should deal, with being diagnosed with cancer.

It's really easy to become jaded at how people view your life after a cancer diagnosis. When a young child is diagnosed with cancer or a mom is diagnosed with breast cancer it breaks your heart. You pray for remission and for a miracle that doesn't always come. And sometimes you just get pissed off.

The last thing any parent or patient wants to hear is, "Oh, you're lucky it's only thyroid cancer." They don't realize that papillary thyroid cancer almost always comes back. And every time it does, it's more aggressive than the last time. They also don't realize that cancers in children are almost always more aggressive than the same cancer in an adult.

Cancer sucks no matter what kind it is and no one should discount the feelings and fear someone has regardless of the type! I'm sure any cancer patient would trade you any day, any time, anywhere.

So I guess I'm pissed..... That little monster has reared its ugly head again, much too close to home. I'm mad. I'm mad as hell. You have people wasting their lives everyday. Yet it seems like those that are trying to make a difference get this crap. I know cancer knows no age, no race, and no gender but sometimes I just simply do not understand.

This is a discussion I often have with the Big Man above on those long nights when I can't sleep. I see that my friends are in for the long-haul, just like Chey. They are going to fight and they are going to win and I will not discount for one second that even I, can understand what they are going through but I will say....

For my friends and family:

As the shadows lengthen across the road, the light blooms at that shadows end

When the clouds turn grey and fill the sky with gloom, please, look for the rainbow in the wake

When the nights grow long and cold, wrap yourself in the warmth of the love that surrounds you

When the music seems to lose it's beat, hear the melody whistling in the wind

When the mist is heavy in the valley, hold on to your faith and hope-as an umbrella for your soul and

When you feel at your lowest and despair, remember
I am there....

Next time, we will continue with "What's a bath?"

XXOO Make Everyday Count,

Bonnie

The Wait

I've been sharing our journey after our 17-year-old daughter was diagnosed with Papillary thyroid cancer. The cancer was discovered during an ER visit after an injury in a softball game. The ER doctor had told us there was a nodule on her thyroid that we should probably need to get looked at later, after she healed from the trauma. Well, for those of you that know me, that later--was first thing the next Monday morning!

We left off last time right after Dr. Sitton had looked at Cheyenne's vocal chords via a camera down Chey's nose.
****

Here we are, up to speed on Good Friday 2015 and we're sitting in a waiting room that has a beautiful glass wall, looking out watching people bustling here and there readying, I'm sure, more than one child for surgery. I remember I was sitting in a chair against the wall trying to take in every movement, every sound, every look my way that my child gave.

I kept rubbing my tongue against the roof of my mouth at a slow, steady pace telling myself, "Keep it together."

My biggest fear was something would go wrong and she wouldn't come back. I'm a nurse, have been for twenty plus years BUT this was my baby and even though Dr. Sitton had a very calming manner as did Dr. Wesson, it didn't help. I was petrified. I think most Mothers, Parents in general, feel the same way when their child is going in for any kind of procedure. I don't care if it's having their tooth pulled, fixing a broken bone or a major surgery like this - you are always scared that something is going to go wrong. It's part of our DNA. With everything you see on the news, it makes the fear that much more profound.

I watched my husband, just kind of stand in the corner with his arms crossed nodding his head when people said anything. He was chuckling when it seemed appropriate but not saying much of anything else. He was scared, probably more than I was.

While I was taking in every nuance of everything Cheyenne did and said, she seemed very animated. She was firing off sentences at breakneck speed and using elaborate gestures. She had told me she had complete trust in Dr. Wesson, Dr. Athanassaki and even Dr. Sitton. They were part of Texas Children's Hospital and they were the best in our whole state!

That animation gave her away, she was nervous and most likely scared to death too, but she didn't want anyone to know and she certainly wasn't going to make it real by verbalizing it! (We are just a little bit superstitious-okay a lot, I won't lie to you.). Even though she had to be scared, I believe God makes children so strong, so much more resilient than adults in his innate wisdom.

The time finally came and Cheyenne handed me her glasses. I had her bag of clothing and they put pneumatic compression devices on her legs to help with the circulation of her lower extremities. They are boots with air bags that inflate and deflate at different intervals to push the blood back out of her lower legs. Its purpose being that it helps keep the patients from getting blood clots.

She allowed us to give her a little hug, then she laid back and threaded her fingers behind her head like she was settling in for a long movie. Shortly they came and they rolled that precious child through that glass door and down the hall. All I could think of was "Alice Through the Looking Glass" and a shiver ran down my spine.

All she said was, "See you later mom."

We gathered everything back up and went down those long corridors and out to the lobby for the long wait.

It's all I could do not to bawl my eyes out. I saw Ed had to wipe his eyes once or twice, as well, but it helped having "Team Chey" in the lobby. Terri was out there working away on her crafting. Susan was there with her bag of goodies and we just chatted. It was really nice and it was very comforting. We appreciate them more than they will ever know! My stepbrother and his wife came to the hospital also, I had not seen them in years. It's amazing how some people never change, that's Bob and Deb! Exactly the same as the last day I saw them. Bob, is very reserved and Deb very outgoing, she loves people. Complete opposites that match perfectly!

We talked, we laughed and we waited. Then we snacked, we talked, we laughed and we waited.

TCH has a phone, by their little break room, at one end of the waiting room, that rings and they give you updates. Whoever is closest answers and calls the name of the lucky one getting a report. Every time that phone rings, everyone in that lobby sits up immediately and turns to look. It's really a bit spooky! You want to answer the phone, but at the same time you don't. You do eventually and then you call out the winner. We waited and waited and and waited before we finally got an update about three hours in. Dr. Wesson had been able to remove the right half of Cheyenne's thyroid, it had a large blood supply so it took a bit longer to remove. Grrrr. We were informed that everything was going well and they were going to start working on the other side.

Pretty soon, Susan had to go about her work. She was so kind, she even invited us to come to Easter Services at her church, which was a really amazing offer. We haven't been to church regularly since we got deep into the school grievance. It's really hard to go and sit in the House of God knowing that the people around you aren't honest. They wear one shirt inside the doors and another shirt outside. I know that church is a house for sinners but those leading it should try harder and be better examples!

After Susan left, the rest of the pack just chatted about old times and hopeful times to come. Terri worked on her crafting and I just watched the clock, it just moved so damn slowly. Finally, after five hours or so they were finished. (Thank you God!) Ed and I went into a tiny little room and talk to Dr. Wesson and Dr. Sitton. Dr. Wesson said he thought it had gone well and that the parathyroid were okay. (Thank you again, God!) He said they would be watching the calcium level very closely, however, just in case. He told us that he had taken the Delphian node (which would be the first lymph node that any cancer would travel to) as a precaution. He said typically papillary thyroid cancer doesn't metastasize until it's about the size of a walnut and Cheyenne's was only about the size of a grape. So that made us pretty happy! We thanked them and I hugged them both and soon we were able to go back to the recovery room to see Cheyenne.

Even being a nurse, I was a little shocked! Chey's face was a little puffy and she was so pale and of course she was still unconscious. The recovery room is one large room and there are several people in recovery. Their beds are all in the area and the nurses have small portable stands for their computers, I believe they're called "Cows." Anyway, as Chey began to rouse, she was very thick tongued from the anesthesia and it was hard to understand her. She didn't open her eyes but she would mumble and we finally figured out she wanted her red panda. We gave it to her and she just clung to it, it was really kind of sad and I nearly cried. It's hard to watch a 17-year-old revert back to being a little child. I just wanted to climb in that bed and hold her. I've told you many times we love Texas Children's Hospital and we really do but if we ever had a somewhat negative experience it was in the recovery room.

Now, I know I'm an LVN and not educated to the same degree as RN's, but generally we have a lot of hands-on experience. My expertise for the majority of my 20 years of nursing has been in the family practice department. I also have the expertise I've acquired as being a mother for 24 years! Cheyenne was still very out of it and I could tell she was semi-gagging, her lips would protrude and she would move forward and extend her chin and then she would kind of drool. I knew this meant she was having nausea and she was bound to vomit if we didn't take care of it. We had tried to discuss this concern with her nurse but she seemed more intent on watching what was going on with an infant behind us. As you know, I can be a little persistent, no not a little, I'm a lot persistent. That's what makes me a good nurse, persistence and observation. I was afraid, my daughter had just had a major surgery on her neck and the last thing she needed was to start vomiting. As I persisted the nurse told me I wasn't there as a nurse, I was there as a mom and to let her take care of the nursing. I thought my head was literally going to spin off! Instead of reacting, I busied myself by getting cool cloths, from another employee, to place on Chey's forehead and wiping the spittle from my daughters face. Soon after one of the doctors came in, I'm pretty sure it was Dr. Paul. (He's a hoot and I'll tell you more about him later) and Chey was a little more awake so the gagging was a little more profound and I believe he ordered something because the nurse gave Cheyenne some medication and miraculously the gagging stopped. Of course Cheyenne was a little groggier again but it was a fair trade off in my opinion.

I've talked to you all about the calcium problem and how they would be watching her. They monitor it through blood work but the doctors also have a neat little trick to come in and check before the lab work. The doctor will come in and tap the side of your face and watch for the nerve to twitch, that's one of the first signs of the calcium imbalance. (Dr. Paul did this) I never knew this before, it's so cool. I would check it sometimes myself in between doctor visits, lol. I'm funny that way, gotta double check--(take that Aaron Rogers)!! We stayed in recovery for well over an hour, waiting for a room, and then the entourage moved on upstairs.

Next time, "What's a bath?"

XXOO Make Everyday Count,

Bonnie

The Time Had Come

Well it's official. I've been putting off writing this post.

I received a bill in the mail from the doctor's office that performed Chey's fine needle aspiration on March 18, 2015. Well as you can imagine, I have a huge stack of bills and EOB's. I was questioning how, after meeting my deductible and my out-of-pocket early last year, could I be getting a bill with any balance. So, I called my insurance liaison to investigate. I had received the same bill a couple times before and it had been processed incorrectly by the insurance company and resubmitted. The last I knew it all had been taken care of. After a little investigation, I was told that they think this was a bill that was processed before I met my out-of-pocket. The funny thing is though, the bill shows it is the first of the cycle and the date they filed it to the insurance is March 2016! The payment that was received was in May 2016, so in my mind that didn't compute at all. I wish Spock was here!

So my usual self, who happens to be maybe a little off, decides to pull up all my bank statements and check the medical account to see if I paid this bill already. I also go through all those EOB's and bills. Now I understand that's the amount on the bill isn't very much, but it's the principle of the matter! The insurance is so screwed up it's unbelievable! I can't fathom how someone who is not in the medical field could ever comprehend anything any insurance company sends out. Actually, a lot of people in the medical field don't really have a clue either. I personally think people overpay all the time and most likely, don't know it. I don't think insurance companies or the doctor's offices are going to tell them any different. Where I'm going with this is, I couldn't even talk to my insurance representative without bawling. It brought up all that horrible fear and emotion, of that time again, and I just couldn't help myself, I just bawled and I bawled and I bawled.

Here I am, trying to put all of that day into words to try and share with people. I hope that it might help somebody else know there is a light at the end of the tunnel. But I can tell you, it's really hard I mean gut wrenching hard. As a mama, I don't think it matters what age your child is when their diagnosed with a possible life-threatening illness, it just tears you apart.

My daughter was a teenager when she was diagnosed, she had seen and done many things. How do you make sense of these young children and infants that get diagnosed with these horrible diseases? I don't usually ask you for anything more than just a read and share of the post, but today I'm going to ask. There's a family, in the next town over, who’s little boy, three-year-old Luke Nelson, was diagnosed with neuroblastoma earlier this year. He's just in the last week undergone surgery to remove the tumor. Praise God they got it all! Anyway, I'd like to ask all of y'all for extra prayers for this sweet family. They have two little girls left at home while they're in New York State. They have a long road ahead of them with medical bills, separation from their little girls (one of which is starting kindergarten without mom or dad.) I just can't imagine how heartbreaking that has to be, so please say extra prayers for this family.

We had left off, last time, the day before surgery for my 17-year-old daughter to remove a cancerous tumor on her thyroid. The tumor had been found incidentally in an ER after a softball injury less than a month before. My sister had driven down, overnight, from Missouri and surprised us in the morning before. So, after all the testing and the doctor's visit, we headed back to the Ronald McDonald house. They had a really cool game room at the house. They had a pool table, air hockey table and video games. They had some old stand up arcade machines, Pac-Man and the wife and Galaga (my personal favorite.) That takes me back to the days of the old Twin Galaxies Arcade in Ottumwa Iowa. To those that know video games, Twin Galaxies is a place of Video Game Gods (and their scores!) You should Google it, it's really a pretty interesting story and it was a part of my youth. I wasn't that great at video games, not like Jerry Byrum, but there are a couple of them I loved to play. Galaga was one, as well as centipede. Anyway, we had a late dinner since Chey couldn't eat in the morning and then we all cratered. I really don't know how any of us ever went to sleep that night, I just kept praying over and over again, "Please God, let them get it all and don't let it be anywhere else."

Chey slept fitfully, tossing and turning all night long - this kid stays pretty stoic so you never know exactly how big her fear is. Once I fell asleep, it seemed like I only slept for a few seconds and it was time to get up and moving. Cheyenne packed a small bag with books and her stuffed red panda from the zoo. She grabbed her phone charger and some pajamas as we threw in a couple of movies since they have DVD players in the rooms. And with that it was time.

Ed, Terri and I quickly grabbed a light breakfast and then we went over to the hospital. Cheyenne and I busied ourselves with check-in while Ed wandered around and Terri set up in a corner with all her crafting. Texas Children's really keeps your check-in pretty simple. You go in, they verify your insurance and fron there since they've already checked to see how much you've met on your deductible and your out-of-pocket, you pay your remainder or you make a payment plan.

I've hit here and there on how our dilemma with the school district had affected this. On one hand, it was insane and it made us all stronger. On the other hand, it just complicated matters with the added stress. We met a wonderful lady, Susan Soto, through all that hell. She's our lawyer, an education specialist, who happens to be very good at her job and nice to boot. You hear all these things about rotten lawyers and in your lifetime you'll probably run across one (we did) but not this one, she really does care about her clients. She came to the hospital before Chey's surgery on Good Friday. She simply came to show support and let us know someone cared about this sweet child. There is no way, in this lifetime, to repay that kindness. Thanks Susan, you're the bomb! (Terri, you're pretty explosive too! Lol)

We visited for a short time before we were whisked back to prep for surgery. The ladies kept each other company for the duration. We followed the nurse through hallways as she led us deeper and deeper into the maze. I felt like the walls were closing in but Ed and Chey were just chatting away. How in the heck could they be so calm? My insides felt like worms were crawling around in there. We ended up in a room where Chey was given a bag and a gown and told to change clothes. After she had done so, we were shown into another room with a glass wall. The area resembled an ER with a centralized desk surrounded by rooms. I had French braided Chey's hair and she had worn glasses, instead of contacts, so she looked like she was all of maybe twelve. Chey made herself at home and climbed up on the stretcher and laid down.

She was watching everyone through the glass and she suddenly sat up and exclaimed, "Look Mom, that guy looks like Eddie Redmayne, from Les Mis!! He's so cute!"

I looked over and shrugged, "Maybe a little bit." (I'm more of a Sam Elliot gal myself.)

Later, when he came in and introduced himself as the anesthesiologist on the case, I thought Chey was going to pass out! We also had a visit from Dr. Wesson and he was ready for hugs! He prepared us for how the procedure would go, time expected etc. and he kidded around with Chey a bit before handing us off to Dr. Matthew Sitton, MD who would be assisting. Dr. Sitton is in the Otolaryngology (ear, nose and throat) department. Dr. Sitton is a very tall young man with a broad smile and infectious demeanor. He immediately puts you at ease with his calm manner. He explained that he would like to put a camera through Chey's nose and look at her vocal cords. He and Dr. Wesson had discussed the need since we had mentioned her singing.

Chey told him "Yes, sure," and he left to get the equipment.

It wasn't long until he and his entourage, (remember, THC is a teaching hospital) returned. There were at least eight of us packed in that 10 X 10 foot room! Dr. Sitton was holding a small container in his hand, it resembled a mix between an vintage oil can and a perfume atomizer. He explained he would use it to spray some numbing medicine in her nose and then he would feed a fiber optic camera in and look at the cords. He said we would all be able to see them on a monitor.

When Dr. Sitton sprayed the anesthetic in Cheyenne's nose, she shivered and said "It smells funny and that was an uncomfortable process."

We all laughed and she said "What?"

They went on with the procedure and thankfully, the vocal cords were fine! It was somehow calming to see so many people just doing what they do every day. That calm soon left though, the minute they rolled my child down that hallway towards an unknown future.

Next time, The Long Wait

XXOO Make Everyday Count

Bonnie