The Butterfly Meat Files

Two thousand twenty four

There is something different in the air when the new year blows in, when the clock strikes midnight it breathes possibilities, air that is full of vigor and hope.

What is it people say, I didn’t see _____ on my bingo card for the year…?

Aside from another surgery for myself we were anticipating, 2024 looked to be full of big celebrations.

Clara’s final leg of senior year which would come with senior prom, graduation and college preparation followed by her eighteenth birthday.

Life’s typical last times, new firsts.. doors opening to ones closing.

But that bingo card, popped off.

And suddenly she was my little girl again- my little, baby, girl…

About three years had passed from the moment I was on a FaceTime call with my growing, not so llittle anymore, girl and at an angle that prompted me to take a screenshot.

Her neck around the thyroid was presenting differently and abnormal of sorts. I took a screenshot that day, thinking my daughter would soon be diagnosed with thyroid autoimmune disease maybe hashimotos thyroiditis like myself or maybe graves even.

I just knew something was new and it didn’t belong.

I have had hashimoto’s thyroiditis for almost ten years, something I found out by going to my physician telling him it hurt to swallow, I told him it is like I have a sore throat but I don’t have a sore throat.

After a physical examination and him knowing exactly the full thyroid panel to run in bloodwork I was swiftly diagnosed with autoimmune disease Hashimoto’s Thyroiditis with multiple nodules, one larger that I then had to have biopsied- the source of my pain in swallowing.

I was deemed fine, your thyroid is fine your labs are in range aside from the high antibodies you will have the autoimmune attacking your thyroid and eventually when your thyroid function declines we will begin medication to treat the thyroid.

I was suffering all the side effects of declining thyroid function and took many months and many doctors to finally find one to treat me.

That one doctor caring about my optimal health, not my lab numbers just anywhere in normal range, giving me appropriate prescriptive intervention helped me get my life back.

My memory then popped to a specific photograph of a friend when she had shared about her Graves’ disease and saw my sweet young daughter’s neck presenting extremely similar.

In that moment when I saw the changes in that butterfly chunk of troublesome meat, I thought here we go again, fighting autoimmune disease and this poor girl has to start so much younger.

I’d been through this fight, I knew what to do… or so I thought.

When I asked her pediatrician about the presentation of her thyroid, combined with she had been complaining of not feeling well that made sense with thyroid disease… something I dreaded happened, she only ran the most basic thyroid lab (one) and told me she was fine.

Over time she continued not feeling well, we’d ask, they’d tell us she was fine her bloodwork was in normal range.

So many times we would be at an appointment where they were asking her questions and someone, usually the nurse at intake, would say have you had your thyroid checked -these women were God’s angels here on earth and my conviction we were not crazy and were indeed on the correct path.

We had to keep going.

December of 2023 she continued slowly feeling worse and our confusion growing right along with it.

Another appointment came, more lack of answers with it.

Then came May 16, 2024 when we went for a sick visit, yet another nurse was insistent on having her thyroid checked based on everything she is telling them - to no surprise the physician didn't include that in the bloodwork.

Unfortunately, yet fortunately, the bloodwork she did run was a little off and they instructed her to follow up with her primary.

We went into her primary the next day and she ordered repeat labs for the following week.

With the words of the nurse in my heart I pressed yet again, and asked for a referral to endocrinology to which she said (I can but they may not see her because her labs are in range).

I insisted, yes we want a referral, she needs a full thyroid panel run we have a history of thyroid disease, hers is visibly getting larger and has been for 3 years now.

Additionally, I (re)explained that my thyroid labs were in range also, all except the antibodies, to which you won't check hers and to the contrary and lucky for me, my primary had known to check them all.

She sent the referral but it was condescending at best "please check this 17 year old for mom".

The week passed, the new labs were still abnormal so this warranted the physician calling me herself recommending an abdominal ultrasound to look at her liver, then she added that if I wanted she could also add a thyroid ultrasound, in case the endocrinologist would see her and would want one.

Why haven't we had one before now?

Yes of course we want one, look at her neck?

Everyone that looks at her neck that has any history of thyroid information asks her, why aren’t you asking her?

To which her physician emphasized, to me, just because it looks different externally didn't denote anything was wrong... her labs are in range.

Let me tell you that they only ever ran TSH or T4 which isn't the full thyroid panel picture by half and never would agree to check her antibodies.

If the mother of the patient has a goiter, multi nodular thyroid with autoimmune disease hashimoto's thyroiditis which is shown by running the lab TPOAb and the patient is presenting with symptoms that come along with under active thyroid and has a very physically noticeable and growing thyroid wouldn't you just run the labs?

I digress, but yes we definitely want the thyroid ultrasound.

All of this while we are celebrating graduation coming and getting her paperwork situated with a school that seemed to have been lost in the system, how does an online submitted college application get hung up in a suspended status and then by no fault of our own put her way far down on a waitlist.

I said there must be a reason you aren't going to be able to start school this fall, I hope it isn't because of your health, but there is a reason.

June 17th she was finally in for her abdominal and thyroid ultrasounds, I knew watching the monitor something was definitely awry with her thyroid.

The next phone call, again from the physician herself, her abdominal ultrasound looked great no worries there... her thyroid ultrasound is showing a large solid right lobe mass where a biopsy is recommended.

Next she said, that maybe the thyroid could be to blame for the additional labs being off seeing how the abdominal ultrasound was so insignifcant.

I hope she had to swallow hard before she delivered that news.

I hope she also ate her words when she insisted the difference in appearance didn't mean anything was wrong, all hinged on ONE thyroid lab was in range.

As life goes, it couldn’t be that easy.

Insert new challenge, endocrinology for pediatrics was booked out until August which I had gotten scheduled, unfortunately that appointment would fall after her 18th birthday meaning they would not take her on as a new patient at 18, and they cancelled her appointment.

Just took it off the schedule.

My next call was to adult endocrinology where they proceeded to tell me they could not schedule her until she was actually 18.

Not we can't have her appointment until after she turns 18, no, it was the system won’t let us put her in the schedule until her 18th birthday has come, you could call on her birthday and we could schedule her then.

Also- she said, right now we are already book out until October...

Already we are in mid June, having been fighting for this now on 3 years and even more we face being out months because once we wait until July 23rd to call and schedule her with adult seeing how pediatrics had no openings before her birthday, what would they then be scheduled out until December?

That is a long time to wait for a biopsy and finally on the road to answers.

Nothing short of a nudge from God, I went back into our medical portal for appointment options, maybe one opened up in any office even further away it would be worth the drive.

Suddenly, there it was, an opening, just into the next week on July 3rd in pediatric endocrinology and a little further of a drive but I'd take her across state to get her seen as soon as we could, because this appointment would have to happen for the biopsy to then be scheduled.

July 3, 2024 I can happily say was her first full thyroid panel.

Unfortunately everything kept coming back in lab range, and she tested far beyond her all inclusive thyroid panel…. everything kept coming back in range, not even a single antibody out of wack, that is when I knew.

Three years.

Three years is all I kept thinking.

I don't know how many I told and I'm sure it was reassuring myself but I couldn't help but feel deep down a nudge from God, that even though I could be frustrated over the three years it took to get here, that if they would have done an ultrasound or biopsy earlier on we may not have had anything yet to see.

Her biopsy was then scheduled for July 25th, at Monroe Carell Jr. Children's Hospital at Vanderbilt.

Oddly enough on our drive down for the biopsy we were talking about concerts when we stumbled on one coming right up in four days celebrating Toby Keith an American Icon.

We definitely made it happen…. as they began speaking about this night was a fundraiser benefiting OK Kids Korral something Toby created, and also Monroe Carell with Vanderbilt…

..I knew.

And each of these moments that I knew, before I knew, gave me time to digest gradually while we waited to be told.

A week had gone by and her endocrinologist got back with us saying that the biopsy came back-

atypical of undetermined significance…this means they can't tell us it is cancer -and they can't tell us it is not.

She said we could monitor and do a repeat ultrasound in 3 months to see if changes in the nodule appear or repeat the biopsy sending for molecular testing that looks for genetic changes that would associate with thyroid cancer.

Clara immediately replied that she would rather have another biopsy.

When the biopsy came back saying it's atypical but we don't have enough to confirm cancer, I said it again.

If they would have done this three or two or even one year ago they may not have seen anything atypical and we would have been stuck living with her being told nothing was wrong.

Now was the time, now was the time to catch it because if there is only a little bit of bad showing up in their first sample then we're catching it while it's getting bad and it hasn't been bad this whole time.

August 8th we go for her second biopsy, this one was I believe 8 passes and much more involved, but at least they started off numbing her from the beginning this time, she stood her ground on that and we backed her up.

She made sure they knew to get what they needed this time, because it would be their last chance after not getting enough the first time.

We were told the molecular testing can take 3-4 weeks to receive results it is a lengthy test, plus as with anything where you fall in line.

We reached out September 6th, the doctor said the testing was not back yet she would make some calls.

We finally heard back on September 11th when she told us there was a delay in sending her samples for molecular testing and it would be an additional 3-4 week wait.

Soon after that message, I did see where her physician put the order in her chart for the molecular testing, it turns out she neglected to order the testing she had only scheduled the biopsy.

Her biopsy report was then updated additionally on September 11th with an addendum that the tissue samples were sent for the molecular testing.

On October 10 we reached out again, cytopathology says the sample is still in process.

Maybe another 7-10 days.

On October 21st, we were finally sent the test results showing your genetic testing result POSITIVE and shows a mutation, genetic change, that has an intermediate - high probability,  70-80% probability more specifically of being thyroid cancer.

Additionally that further risk of cancer recurrence associated with this molecular profile is expected to be intermediate.

Your next steps are to see the surgeon to discuss removing part or all of your thyroid gland.

The surgeons office was amazing and got her right in on October 29th.

After reviewing all the information he recommended total thyroid removal which was great, Clara already knew that is what she wanted, just take it all out and be done she kept saying.

He looked at Clara and said and someday you can thank your mom for saving your life because this is a case where mom's gut, was right.

I thank God for keeping on me, through angels here on earth, in those moments where someone would ask her or I about her thyroid, we kept pushing for more.

They let us know the surgeon was booked out into the next year but they'd be moving some things around to get her in sooner and would call us in about a week with her scheduled surgery.

Constant waiting can be so torturous, let me just say that. Wow.

Blessed, they called and were able to get her in November 15th for surgery. We couldn't have been happier they were not making us wait much longer at all.

You never know when you are a shining light in someone else’s day, like a moment a friend that told me I'm the very best person to have in hard situations, so that my kids were lucky to have me and my girl would be ok.

Blessed and grateful for our church family, even still as someone like me reluctant to accept help, they came over and prayed over Clara and her medical team (and didn’t run when the dog kept making rounds kissing faces while all our heads were bowed).

We were shown so much love, support and prayer it was as if the weight on my shoulders lifted and I was at peace going into this for Clara.

Surgery day came in the slowest blink of an eye it did.

They gave her a stuffy, a jackalope because the nurse saw her antler ankle tattoo. They treated her straight up like every other little kid in there and that is when she said she wants to stay a kid forever, I hope in her spirit she does give herself that.

Clara did great through surgery.

That right side did have a substantial footprint and she may have lost one or two of her parathyroid glands which the surgeon had explained prior that if the growth had taken into any parathyroid she might or might not keep all four.

He additionally went ahead taking some lymph nodes that were staring at him to be safe, everything went great otherwise and she was done sooner than expected.

When we got in to see her she was still very sleepy but responded to grabbing my hand, I went to move but she just squeezed tight to hold me there.

So there I stood my baby girl holding my hand, asleep with a drain in her neck. She was ok.

It seems she was having a slow time to wake up like her mom does from anesthesia.

When she woke up, she did not feel good she said never again she was so sad.

It was awhile to get her to a room but once we did she was definitely waking up more and nauseous. No one likes being sick but she was especially worried, and unfortunately she did end up throwing up ugh, my heart.

Joshua headed home for the night and I didn't leave her side from the minute they took us back to see her.

I sat there in the chair right by her side watching her breath all night nodding off briefly here and there but you know that mom move where you start to fall asleep and jerk yourself back awake because you can't possibly take your eyes off of them.

She did well through the night, taking only over the counter pain meds and a few things for the nausea. Her calcium was being watch as the surgery itself can stun the parathyroid and after we got the clear on her labs with instruction to eat tums every so often for the calcium we were good to go home by early afternoon.

Joshua came back to get us and we when got home I realized, I liked being by her side that 24 hours and how would I watch her sleep the next several nights as bad as I wanted to but alas she was declining me putting the recliner in her room.

She really rebounded quickly, learning how sometimes when you take that thyroid pill in the morning you're awake for the day!

At Clara's post op appointment December 2nd her surgeon said everything looked great was healing perfectly, and that the pathology came back clear but confirming of cancer on the horizon.

He said the thyroid removal got everything, she will not need any follow up care for this or cancer just her regular endocrinology appointments to manage the pill she will have to take the rest of her life but otherwise he said your body was doing it's job fighting the cancer from growing.

That is what was contained in that larger mass and we caught it before it turned to true cancer, but that eventually the cancer would have won out over her body's fight.

He again said, your mom saved your life.

Now she is cancer free, I believe the doctor said specifically because the surgery got all of the cancer and she requires no more follow up care 'she is a free woman'.

I said hold on hold on... but now, as she has gotten her first vehicle she doesn't need me, again.

She is a cancer free, free woman indeed.

My toots, I will always be here fighting for and with you!

Take good care and travel safe,

Sami