Houston or Bust

After my discussion with Alli, the intake Coordinator for Texas Children's Hospital's Thyroid Tumor Program, I said I was able to sleep without terror but that doesn't mean sleeping without fear. It also doesn't mean I didn't have fear every waking moment.

I had been doing enormous amounts of research since being informed of a nodule on my daughter’s thyroid by an ER physician after a softball accident and ensuing CT scan. The information was unending and somewhat unnerving even for me, a 20 year-plus nurse. Through the research, and my intuition, I knew we needed to do further testing and we did. Cheyenne had an ultrasound, a thyroid uptake scan and lab work. Ultimately, we learned the nodule had the potential to be very serious, it had a blood supply, was solid and had "micro-calcifications." So, yes I was scared to death for my child.

We've talked about the diagnostic exams, but not much about the lab work. Chey's family doctor is an internist and initially he ordered labs to check the thyroid. He also ordered an antibody test that could show if cancer cells were present. I had forgotten about the tests until Alli called Friday (the 13th go figure) and asked if we could get them drawn in Comanche. She was quite surprised to learn that they had already been drawn. I promised to fax them immediately. Well, of course, this had to mean the labs were significant and Momma Bear came roaring back and pounced. The regular thyroid panel was normal but the antithyroglobulin antibody test showed a "low positive." Crap, normal is negative (no number) and she had one, low but it was there. I talked to our doctor and he said it was really low and to wait until we consulted with Dr. Athanassaki as well as the results of the other portion of the test.

So, here we go nail biting, sick stomach time again! We waited all through the weekend and finally on Tuesday we got the thyroglobulin (ICMA) result. It was 76. All I could think was Damn, Damn, Damn. Another piece falling into place against us, we couldn't get a break. I didn't tell my husband or Cheyenne this result but I spent time talking with my office manager. She was very supportive and allowed the mom in me to bawl like a baby before settling me down and telling me to wait and not jump to conclusions, no matter how bad the picture seemed. I swear, I was like Jekyll and Hyde those days, but she helped me keep my sanity. Thanks Jeanette, it meant the world!

All this time Chey was on Spring Break so she wasn't missing school but she was missing her beloved softball and that was so gut wrenching to watch. On one hand it was good for her to rest, but I wish the kids would have visited, this would become the norm though in the long run. I think it would have helped her deal with the emotional battle more effectively. She would cry out in her sleep mumbling about cancer and statistics nearly every night, way too much baggage for a seventeen-year-old kid to handle! In the waking hours though, you'd never know and I, to this day, don't think she had any recollection each morning.

I took off work early on Tuesday so Chey and I could take the drive leisurely. She has a thing about historical markers, so we stopped many times for her to read. It was calming for her and sometimes during the drive, I would get glimpses of the Chey before the "C" word. She was laughing and playing all the Disney songs on her playlist while we sang and acted out parts to each one. We had to be a site, if anybody was looking that is. We pulled into Houston in the early evening, checked into the hotel (thanks Jodi) and had a light dinner. Chey's defenses kicked in and she became very solemn and begged for an early night. Even though there were two beds, she snuggled right in with me and that was fine by me!

Next time; The Incredible Dr.A and Alli Too.

XXOO Make Everyday Count,
Bonnie

The Search Is On

It's really uncanny how fast a week flies by! Actually it is uncanny how fast time in general flies by. This week has been a total whirlwind as Cheyenne has been preparing for cheer tryouts and formal, all while attending college full time. Whew, I'm worn out watching her but so blessed she's able to do it.

Let me bring you up to date in our story. I left off telling you about beginning the process of finding a specialist for my teenage daughter after we found a nodule on her thyroid that we believed was cancerous. I went to work on Thursday March 12th, only five days since the accident that led us to the hospital in the first place, and discussed our options with our family doctor. He suggested that we see an ENT (ear nose and throat doctor) that he knew in Abilene. From what I had learned in my research, I told him that we really felt the way to go was the team approach.

In his usual fashion, he dipped his head and looked at me over the top of his glasses with his brows raised and said, "You need an ENT that has removed many thyroids if that is what it comes too, and he has done many."

While I fully agreed with this rational, I also strongly felt the need for a team of specialists in pediatric thyroid cancer, not adult.

It was a very sobering experience to learn that the top three hospitals for pediatric cancers weren't even in the state! They were in Boston, Cincinnati and Philadelphia, gosh. It was, however, a very nice surprise to find out that the number four hospital on the list was, you guessed it, Texas Children's Hospital in Houston. It was also exhilarating to learn that Texas Children's had recently established a "multidisciplinary program dedicated to the diagnosis and treatment of children and young adults with thyroid tumors." I explained all this to Dr. Hubbard and he gave me the okay to make the call, as I am not only Cheyenne's mother but also her nurse.

Now I have called offices for referrals on my children before, but never with the level of fear or desperation as I was feeling in this moment. I was going to have to keep the emotions under control and do my job. When I called into the hospital, I spoke with a receptionist and explained about my patient, my baby. Generally when making referrals to offices, I would be required to leave my contact information and wait for a return call. This time my experience was completely different. The receptionist put me on hold and very quickly I became acquainted with Ms. Allison D. Bujnoch RN, Patient Care Coordinator. Alli, as we would come to know her by and appreciate, was by far the most unbelievable nurse I had ever met and we would rely on her greatly. I explained our situation and told Alli everything. I absolutely spilled my guts about the accident, the tests we had done, the results and my fears both as nurse and as Mom. I just couldn't hold it all in any longer, it was like a volcano erupting out of my mouth, hot lava rolling down the mountainside at an unstoppable rate. Thinking back on it now, I have to laugh at myself a little. However, Alli never once acted like she was talking to the total psycho I must have come across as, and I will never forget her or be able to thank her enough for that. Alli told me her provider, Dr. Ioanna Athanassaki (yes, it was a mouthful at first, but now rolls off as easy as Smith) wouldn't want us to wait, she would want us in immediately. She was so kind and explained, without raising more fears, that she would get with "Dr. A" for a game plan. Alli requested that I forward all of Chey’s records and scheduled us for the following Wednesday.

She did speak with Dr. Athanassaki and not only did we have an appointment with her, but they had arranged for Cheyenne to have a fine needle aspiration the same day! This was a feat in itself, I assure you, scheduling with specialists just isn't done this easily. I thanked Alli and as we were about to end the call, I asked her what had prompted the urgency, was it the micro calcifications or the vascular nature seen via ultrasound? She was so tactful and told me that as a nurse I knew the information was concerning and that I also knew we couldn't speculate. She said we needed to follow the process and that she would be in touch the following week. As both a nurse and mother, I can say that the interaction that day was not the norm and I was instantly calmed by that voice so very far away. If Alli was any indication of the type of people at Texas Children's, we were in the best hands possible and for the first time since the accident, I slept without terror.

Next time, Houston or Bust.

XXOO Make Everyday Count,
Bonnie

There and Back Again, a Non-Hobbit's Tale

For those readers who are not aware, the Houston Livestock Show and Rodeo has a singing competition annually called Rodeo Rock Star. There are two age divisions up to age 21. To be selected you must first record a video and make it public on YouTube so people can vote. From there it’s in the publics hands with the top ten vote recipients, in each category, being selected to perform in front of a live audience and three well known judges at the rodeo itself. It's really a pretty cool deal, the winners even get a demo recorded and cash! Why am I telling you this? My daughter Cheyenne, amongst everything I have been telling you about over the past few weeks, made the semifinals! 

Speaking of that story I have been telling, we are at March 10, 2015. Cheyenne's neck injury during a softball game and subsequent trip to the Emergency Room resulted in an incidental finding - a nodule on her thyroid. We then went to the doctor and had an ultrasound performed which showed the nodule to be somewhat worrisome, it had a blood supply. Chey was still in a neck brace and taking a variety of medications to treat the original injury but she was determined to see the Rodeo Rock Star competition through. My husband and I had tried to talk her out of going (it's a five hour drive for us and we thought it would be too much for her) but she was having none of it. The idea that there could be cancer in my child's neck scared the absolute hell out of me and not giving her a chance to perform was out of the question in the end. So we loaded up, cushioned her as much as we could and headed to Houston. Of course, the day was dreary and cold, fittingly just like our moods. Even though our family doctor had tried to alleviate my fears with statistics, I was beyond worried. However, I knew I had to be strong so I went back into Momma Bear mode with my knowledgeable friend Dr. Google by my side throughout the trip to Houston. As I searched many sites, I was very surprised that blood supply was not the key phrase that seemed to be so indicative of cancer risk, rather it was the "micro calcifications" that turned up over and over again. I found that nodule size (anything greater than 2cm) and solid form were also indicative features.

Everything I was learning fueled my belief that my child, this beautiful vibrant human being, had cancer - specifically Papillary Thyroid Cancer (PTC). What next? Several of the leading minds on this disease, seem to recommend one test as the best and most reliable indicator for malignancy, the ultrasound guided biopsy or FNA (fine needle aspiration). This is where the doctor withdraws cells from the thyroid nodule with a very fine needle while guided by ultrasound and then a pathologist examines the cells for malignancy. During the drive, Cheyenne asked me what I was finding out and told me not to "sugar coat it". I shared the information with her and her father in the most matter of fact way I could. She simply acknowledged the facts and told me to find her a good doctor. She made it sound so easy.

We reached the rodeo grounds and the venue for the show. I don't know how Chey does what she does. Her neck was throbbing, she was taking both hydrocodone and flexeril. Yet, whenever someone spoke to her and asked about the pain she smiled and put on that face that says, 'It's really not that big of a deal'. The night wore on and the kids all did great jobs. Cheyenne performed a Jo Dee Messina song and it was great! She was able to do more than we ever dreamed considering the state of her neck and the realization that she most likely had cancer. The judges (Cowboy Dave, Joey Guerra, and Phil Nudleman) each asked the contestants questions and commented on their performances. Mr. Nudleman said that Chey has a unique strumming pattern and voice quality. He asked about the raspiness of her voice and wanted to know if the cervical collar was pushing on her neck constricting her breathing. As one not to make excuses, Cheyenne told him "No, it's been like that for awhile now." This was true and we had believed it was due to ongoing allergies but now, I began to wonder, was it from the nodule? Cheyenne told them about the accident but never even hinted at anything more. One judge commented on how people walking by had stopped and listened too, remembering the song. Cheyenne didn't make the final five that night, but she showed everyone there what she was made of. After the competition, one of the judges told her she was in his top five and to say I was proud of her is a huge understatement, I was simply amazed!

We spent the next day recuperating and we all slept in like we weren't going to ever again. Cheyenne decided we had better "get on it" and she began researching fervently too in hope of finding just the right doctor. As we were backed up in Houston traffic, we saw a sign for Texas Children's Hospital and Chey asked if they had a thyroid specialist. I told her I didn't know but I bet we could find out. I firmly believe that we were destined to be in Houston, not for the competition but to see that sign....He puts you where He needs you to be.

Next time, the search is on.

XXOO Make Everyday Count,
Bonnie

Battle Lines Drawn

The dawn breaks on Monday, March 9, 2015. I have been awake for hours. My daughter, Cheyenne, had a neck injury over the weekend that had inadvertently led to the discovery of a nodule on her thyroid. We were going into the clinic today to get an ultrasound, we hoped. I watched Cheyenne sleep, she was propped up on pillows with the cervical collar in place, out cold from the narcotics and muscle relaxers. I was thankful in this moment because the injury could have been much worse. Yes, there was a nodule, but her spine and bone structure were okay. Thank The Lord for that at least. Whatever was wrong with her thyroid was in for a fight, we would go after it with a vengeance no holds barred!

After getting her up and around, the two of us headed to the clinic. It's really a nice thing when you work for your child's doctor, and he's really nice to boot! We had talked several times over the weekend and when we got there, Dr. Hubbard had already called to see if we could get the ultrasound, and we could. He also explained there was lab work we should do that could show thyroid problems. In technical terms, Chey had a TSH, a T4, a Total T3 and an Antithyroglobulin ab (antibody). The last could show the presence of autoimmune disorders, as well as cancer.

The ultrasound was hard on Chey, she had to put a roll under her neck and mimic the hyperextension she had suffered in the initial collision sliding back into second base. The technician had the screen on and we could both see the nodule. It measured about 2cm (so much for "small nodule") in size and looked like it might be two nodules clustered together. It also appeared to have a blood supply. We discussed it very nonchalant and I was thankful that the lights were off when Chey asked if blood supply was a bad thing.

As my heart raced and my face flushed I looked at the tech and told my child, "We will have to wait and see what the radiologist reads out."

The nausea was rising in my throat, and the buzzing in my ears was back as those two words - blood supply - ran through my mind. With twenty years of nursing experience under my belt, I knew enough that these two words filled me with fear. I couldn't imagine how other parents would take the same information. Would they comprehend the potential for bad news or be oblivious?  I could only hope it was the latter.

We went back to the clinic and the waiting game ensued. The lab work would go out to another lab and take a day or so to complete. The radiologist would read the ultrasound hopefully soon. In the meantime, Dr. Hubbard sent Cheyenne for some physical therapy on her sore neck. She had made the semi-finals in an annual singing competition, Rodeo Rockstar at the Houston Livestock and Rodeo the following night, and she was determined to sing!! That mindset would be indispensable in the future.

I stayed at work and Chey's grandparents played taxi service and sitters after therapy. Dr. Hubbard, knowing my personality perfectly, shared that cancer in Chey's age group was rare. He said he could count the cases he'd seen on one hand in all his years of practice. He explained that she would probably need to see an ENT (ear, nose and throat specialist) regardless, and he personally new one in Abilene. I was appreciative for the information and his genuine concern, but it did not quiet the inner-workings of my mind and intuition by any measure.

After much waiting, the report came back. It read, "Right lobe measures 4.4 x 1.4 x 1.5 cm with a heterogeneous echotexture. A dominant right lobe nodule is identified which is predominantly isoechoic, it measures 2 cm in greatest diameter. This is associated with microcalcifications and is vascular. Further evaluation with percutaneous biopsy is recommended."

That was all it took to instantly send me back into Momma Bear mode, the battle lines were forming and I was in for a couple days of hard research and determined decisions.....

Next time: There and Back Again, a Non-Hobbit's Tale.

XXOO Make Everyday Count,
Bonnie

Happy Easter!

Happy Easter from my family to yours!!! 

One Year Anniversary

Oh boy has this been an emotional roller coaster of a week and I don't like roller coasters, well the ones with loops anyway! Over the past few weeks, I've been sharing with you my family’s journey after my teenage daughter was diagnosed with Metastatic Papillary Thyroid Cancer last year. Last time, I left off with the intention of telling you about the initial visit to our family doctor after discovering a thyroid nodule by accident in the ER, but that story will have to wait a while because tomorrow is a pretty special day for us in the Holt household. Why? Well let's fast forward a bit.

This week, March 20th to be exact, marked the first Anniversary of the diagnosis. I say "anniversary" in both a good and bad way. We are extremely blessed that Cheyenne is here with us and seemingly thriving. Chey is enjoying her freshman year at Tarleton State University, of course she reminds me often that she is officially classified as a sophomore LOL. She is a cheerleader, in a sorority and honor society, as well as being on the Dean's List. We are thrilled she is totally immersed in the college experience. Bleed Purple! I really am amazed and blessed at what a spectacular young woman she has become in spite of the obstacles she has faced, and thrilled to see her continue to blossom. But none of that will ever take away the emotions of what March 20th just a year ago brought.

Pediatric thyroid cancer is extremely rare. An article I read during my Mama Bear mode research by Connie Brichford The Facts About Pediatric Thyroid Cancer states that only one child in a million under age ten, and about 15 per million teens 15-19 years old develop thyroid cancer. That's great news right? Not so much when your child is one of those fifteen. Cancer is cancer and having a child diagnosed with it scares the absolute hell out of you! This week, all those fears and emotions came rushing back. One minute I'm okay, then the next I'm back to bawling and seriously worrying about the follow up tests in June. (Chey's tumor marker didn't go down, and she will repeat the whole body scan to look for metastatic disease).

I tell myself and everyone else, it's going to be fine, the marker didn't go up either, but really how do I know? How can this beautiful young person look so good, yet have a time bomb lurking in her body? These are the questions that keep me up at night and make me feel half crazy. But this isn't the worst part, the absolute worst part of all of this is I have to watch my youngest child, my baby girl, go through the same damn thing, only she's the one living with it. She goes to school, works, attends all her functions and seems to take it all in stride. She's extremely talented at keeping that game face on, she had to learn this to survive high school after all - at least there is something I can thank DISD for! Yet I see cracks in the facade. It's the texts and calls to say simply, "Love you" that break my heart. Don't get me wrong here, Chey tells me often that she loves me and vice versa but it's usually "Moon Mom" or "Heart you". When she randomly says the "L" word, she's worried or preoccupied, her mind is working on maintaining that level of security she needs to depend on and grind through it all. Lately I see frequent glimpses of that little girl who used to hide behind my legs, in the woman who now looks down at me. This is her little "tell", I'm not even sure she is aware of it. The heart strings pull tighter as she asks more "what if" questions - my answers, without emotion, are always the same, "We will have to see what the tests show and then do whatever Dr. Athanassaki recommends.

We have done this daily for the last several days. This is our dance, we have performed it over and over again and, this week especially, emotion just takes over me. Yet as draining as it can be I love my children always, (you too Sean), and considering the alternative, I pray we do this dance together for years and years to come, regardless of how many loops I have to roll through on that coaster. It may be cliché, but "To The Moon and Back, Baby."

XOXO Make Everyday Count,
Bonnie

Mama Bear in Action

I had just found out my daughters spine and neck were OK after an injury playing softball, crisis averted right? Not exactly… the doctor had also discovered a nodule on her thyroid during the work up. I look back now and think about all the emotions that were bombarding me from every direction. There was fear, oh my gosh so much fear, but there was also anger and dismay and disbelief as well. All I could think was what the hell, Please Lord, let it be nothing. This kid had already been through so much with our ordeal with her school district. 

We had loaded Cheyenne into the car for the long ride home, her neck was still in the c-collar so we reclined the front seat and tucked a jacket around her head like a baby roll. It was about one in the morning and she had received pain medication at the ER so we hoped she was going to sleep most of the way home. There was a silence so heavy it was like a blanket trying to smother me. I knew my husband had questions but was afraid to ask while Cheyenne was awake, she however, was not going to wait.

She asked me, "Momma, what did he mean, what is wrong with my thyroid?"

I told her I didn't know, we would have to go to the doctor and see what he suggested.

She didn't let that answer slide, instead she asked "With your medical background, what COULD it be?"

I have always tried to be up front with my children and answer their questions directly but without too much detail if unnecessary. I told her that it could be a benign nodule but it could be something more. I told her she would most likely need a thyroid ultrasound and possibly other tests. She asked if we would wait like the doctor suggested or would I look into it sooner. I could hear the underlying fear in her voice as she asked, and the fatigue also.

I told her I would do as I always do, she broke in and groggily said, "Good Momma, you'll find out quick and then we can take care of it" and she gave in to the narcotics and dozed off.

After a few miles, my husband asked if it could be really bad.

I told him, "if you mean bad like in cancer, yes it is always a possibility and that is why we are going in Monday and getting an ultrasound." In my life, I've never known how to do anything halfway, either I'm all in or I'm out. This would be no different.

Momma Bear was on the job. We drove home the rest of the way without too much discussion. My husband knew he had his answer and it was best to let me work out my plan in my own way and just go with it. When I set my mind to something, I do not stray from the goal easily, ask anyone, they will agree. The drive home went quickly as I was Googling all the way home. I then spent most of Sunday on the computer as Chey stayed pretty medicated and we iced her neck often. She had made the semifinals of the 2015 Rodeo Rockstar competition in Houston, top 10 in her age group and was due to perform in only two days!! We had tried to talk her out of going but being the competitor she is, you know the drill by now, she was determined to perform. So, in the midst of this entire ordeal, we were doing everything possible to get her some relief so she wouldn’t miss the show.

As medical professionals, we typically encourage our patients to avoid Dr. Google because they get just enough information to scare themselves half to death or they manifest symptoms they didn't have before--often times delaying true diagnosis of their problem. As patients, we should try to follow our own advice, but I needed answers, and I found plenty. According to several articles I read, (my favorite is thyca.org) thyroid nodules in children are pretty rare but when they do present themselves they are more often malignant, in fact, approximately 26% of them are in children vs. 5-10% of malignancies in adults. Most of these cancers are of the papillary or follicular forms (90%) but there are two additional forms, medullary (mostly inherited when in children) and anaplastic which is a more aggressive type. I also found out that girls are at higher risk than their male counterparts in the 10-19 age group, and nodules could be solid, cystic or mixed. As I investigated more, I found that ultrasound was usually the first test performed and then dependent on the result they would recommend a thyroid uptake scan, (a nuclear study that tests the function of the thyroid) a fine needle aspiration, or both. A fine needle aspiration or FNA is a biopsy procedure where a thin needle is inserted into the nodule to take tissue samples. They would also probably do lab tests and the literature seemed to say that size of the nodule mattered. It would have been helpful to get the CT scan copy or the report, when we were in the ER, but they said only their medical records department could release them and I didn't have it to reference!! It made me nearly crazy wondering about the size of Chey's nodule but now I had direction, I knew the course of action to take and that the first step was to get an ultrasound and then go from there. In the meantime I would continue to learn as much as I could about this potential adversary, with Dr. Google's help and all.

Next time, In the Doctor's Office

XXOO Make Everyday Count