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