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

Time to Lock and Load

Hello again! We are back to sharing the details of our journey after our teenage daughter, Cheyenne, was diagnosed with thyroid cancer. As I tell people often, Chey was one of the lucky ones and they look at me like I'm nuts! (I am a little bit). How in the world could and would you say you are lucky after someone you love is diagnosed with cancer? Well, let me explain. In Chey's case, her tumor was on the backside of her thyroid and was not able to be felt by touch. She didn't have an obvious lump that could be seen. Most of the time, per thyca.org, pediatric and teenage papillary thyroid cancers are more advanced at the time of diagnosis than it is with adults with the same disease. The majority of children with papillary thyroid cancer have local spread to the lymph nodes of the neck at the time the thyroid cancer is diagnosed. About 10% to 20% of the children have distant metastases, most commonly to the lung, compared with only 5% of the adults with this disease. The site says that in the fifteen to nineteen age group, only 15.4 out of a million get this cancer each year. So in summary, by Chey having her softball accident and ending up in the ER, her cancer was found very early, before any obvious symptoms appeared – and thus she was one of the lucky ones. This is what keeps me going, the thought that, ‘We found it early so we can fight.’


We headed back to Houston, to Texas Children's Hospital on April 1st, 2015. We were staying at the Ronald McDonald -Holcombe House, this time, instead of the costly hotel, what a relief! Like many people, we have health insurance but you don't realize how much you have to pay out of pocket until you have a major health problem. First you have deductibles, which have to be met before the plan picks up anything. Then you have out of pocket to meet and many plans, like mine, have different levels of coverage - mine has four of them and Texas Children's is in my third level. You're already paying out the nose for the premiums then bam, you realize how it all really works and you start sweating. We were fortunate though, my daughters employer, Dublin Golden Chick, and my co-workers both organized fundraisers during this stressful time and alleviated much of that initial financial burden. Thanks CCMC (Jeanette) and David and Debra Connor for lessening that worry!


To stay at a Ronald McDonald House, you have to be referred by either a TMC Healthcare Provider or Social Worker before your first stay. They run a background check on everyone eighteen or over and once you pass, you are put on a request list. They have fifty rooms, each with 2 queen beds and a bathroom. Families with children 21 or under that are being treated in a Texas Medical Center member institution are eligible, you pay $25 a night and can stay up to 45 days each time. We checked in, paid our fee and were given instructions. Each family that stays is given a list of chores. This is what helps keep cost down. It is specific about how your room will be cleaned and your duties. We were assigned a trash detail and an area of the four-unit kitchen to clean. The kitchen reminded me of a home economics classroom in high school. The four stations each had two stove/oven units, a double sink and countertop. The two sidewalls shone with stainless steel from the refrigerator/freezer units. Each set was labeled with room numbers and yours to use for the stay. At the back of the room, a countertop stretched side to side. There were breakfast breads, toasters, cereal containers, rolls of tin foil and plastic wrap, spices, and dry staples lining the entire top. At the back of the right wall, there was a ceiling to floor cabinet full of cooking ware. It was all very used and brought tears to my eyes at the thought of how many families had traveled through these doors, used these pots and pans while not knowing if their child would survive their battle. Over time, I would learn that God gives parents a Teflon coating, just like the pans so we can just keep on cooking - day after day no matter how hot the fire was.


The next morning, we went over to the hospital for Chey's ultrasound. She and I went into the room and a female technician did the ultrasound, just like the first one she had. The tech didn't say much, she just did her job and soon we were done. The next stop would be Dr. Wesson, surgeon extraordinaire. Now I'm sure you remember that throughout this journey I had developed a serious relationship with my dear friend, Dr. Google. Earlier, we had put our heads together and researched surgeons. The majority of the literature we discovered stated that there was a better outcome when a high volume surgeon performed the surgery. On the TCH website, there was a wealth of information available. There are 80 full-time pediatric-focused pediatric surgeons on staff that perform more than 25,000 cases a year and we were about to meet the Chief of the Department of Surgery, another God thing in my opinion!


We were checked in and then led to a little room, not much different than that of Dr. Athanassaki's. There was a table, a couple chairs, a desk with a computer monitor on it and a stool. We waited patiently and I kept going over my numerous questions in my head. I also was wondering about Dr. Wesson's personality. Was he outgoing? Was he going to be so intellectual that we couldn't understand him? Would he be willing to give us an honest opinion of her prognosis? What if he was so aloof that we were uncomfortable? I was so nervous, (surgeons in general do this to me for some unknown reason) I felt like I could vomit. Then here he was. He is a small framed gentleman (don't shoot me Dr. Wesson) and reminded me somewhat of Don Knotts in 'The Ghost and Mr. Chicken", with just a little more fullness in his face (I love that movie btw.) Anyway, he was in a shirt and tie under a brilliantly white lab coat.

'Yay,' I thought. ‘He pays attention to the little details.'

We rose from our seats as he entered the room and he immediately extended his hand in greeting as he introduced himself. In my usual way, I grabbed him in a hug and I think shocked him a little bit but alas, no - he had been forewarned! He stepped back a little and placed his hand on his chest and then gestured for us to take a seat as he moved to his stool and did the same. He then informed us he had heard we were huggers. Lol, he had a twinkle in his eye and a sense of humor and the nausea receded, at least for now. After the introductions were taken care of, he went right into detailing the next day's schedule.

"Would you mind if I examined you?" He asked Cheyenne.

She smiled and said, "Not at all", as she climbed onto the exam table.

Dr. Wesson's hands fit his frame and he appeared to have a very light touch as he palpated Chey's neck. "I am unable to feel the nodule and I most likely wouldn't have on a routine exam either."

He asked about other symptoms and Chey said almost questioningly, "I have had some hoarseness for awhile, but everyone thought it was my allergies. I guess with what we know now, it could be from the nodule, maybe."

Dr. Wesson then sat back down and we discussed the possible parathyroid involvement and damage, like we had with Dr. A. He used a visual aid to show the anatomy and I got down on my knees and moved closer to his desk. Ed and Chey told me later that as I moved closer to him, he rolled back. Sorry, Dr Wesson!

"We will be monitoring you frequently for hypocalcemia (low calcium ) after surgery." He continued, "Sometimes one or more of the parathyroid glands can accidentally be removed with the thyroid gland or damaged. I will do my best to avoid them."

He went on to explain how delicate these little guys are and how important they are for your body. Low calcium levels can cause muscle cramps, tingling, numbness or burning to fingers, toes or face. They aid in your bodies ability to clot blood. They have a pretty important job! I informed him that Dr. Athanassaki prescribed a calcium supplement some time ago in preparation for this possible complication, he wasn't at all surprised. That was the exact reason we chose this facility, for the team approach. I was so relieved; everyone was doing their part in this huge undertaking to treat my child! He told us it would be a long surgery and not to worry about the time. He showed Chey how he would try and follow a natural crease in her neck, (not much in this lean child) to hide the scar.

Then a much more relaxed gentleman, whom I liked immensely by this point, rolled toward us and said "I will see you in the morning."

We left after the nurse gave us instructions for the following morning and headed back to the Ronald McDonald house for rest, reflection and time to gather our strength for tomorrow's battle.

Next time, #cheykickingcancersbutt

XXOO Make Everyday Count,
Bonnie