How we became the “Thyroid Family”

Writing an article about thyroid disease in children is the last thing I thought I would be ever doing, until this year when our world what turned upside down.  Now, bear in mind I am a mom to 3 wonderful kids who all have been diagnosed with thyroid related medical conditions within the last 7 months, so that truly means I could write a whole darn book on what we have learned, not only medically, but emotionally as well.

First off, how we became the “Thyroid Family”?!  Myself and all 3 of my children were diagnosed with Hashimoto’s Disease, which is when your immune system is triggered and attacks your healthy thyroid.  This process takes place at varying speeds from person to person and can even happen over years.  When the your own immune system attacks your thyroid it causes inflammation or something you may have heard called “Hashimoto’s Thyroiditis”, and this prevents your thyroid from functioning properly on its own.  Now, everybody’s next question for me is always how did you know you had this?!  Well, our story is not typical, although Hashimoto’s and Thyroid Cancer is not too typical in children anyway.  Our story started as a rountine 6th grade physical, the doctor had felt her neck as usual with exams, but it was different this time, you could see the look of concern and then came questions-have we ever noticed an enlarged thyroid before, does she have any difficulty swallowing, and any family history.  Well, our answer to all of those questions was no.  No family history, no symptoms yet at that time of any kind, so we proceeded with labs, just a TSH, and this was normal, at the higher end of normal, but normal, so now we just are reassured and told to wait to recheck in 6 months.  Well, we didn’t make it that long, things started to not add up for my daughter, she started experiencing episodes of dizziness and we even passed out and got a mild concussion one day after fainting.  We didn’t give up, we kept doctoring, the ER said its fine, acute care said no problems, but our local doctor agreed something was not right.  We had labs again and this time she had become hypothyroid, and thankfully before just starting that thyroid medication our doctor wanted to check an ultrasound.  The results didn’t look good right away, she had 2 nodules on her thyroid with malignant looking characteristics.  So, we were referred to the closest university childrens hospital to get a more in depth work up, and that is just what happened.  It seemed like forever, those long 2 weeks, but we learned indeed it looked very suspicious and she needed surgery.

Well, the scariest day of my life was surgery day, a 4 hour surgery, with a ton of possible complications, and I cried my eyes out for my baby girl.  She was so very brave, I am so proud of her everyday!  She had a total thyroidectomy and left neck dissection with removal of 20 lymph nodes and last April and was diagnosed with Papillary Thyroid Cancer.  The cancer appeared to be maintained and now we are finally NED (No Evidence of Disease) and although we are so grateful her cancer has been removed she had some complications, she was now diagnosed permanent Hypoparathyroidism as a result from surgery her parathyroid glands were either injured or inadvertently removed, none the less they did not work.  Hypoparathyroidism is quite the thing to say, spell, treat, and explain!!  Hypoparathyroidism is very rare, and is where you have decreased PTH (parathyroid hormone) which leads to hypocalcemia (decreased blood calcium levels), which leads to numbness, tingling, cramping, dry skin, fatigue, depression and anxiety.  So, as you can quickly tell I could likely write at least a whole other article but maybe a short book on this as well.  Long story short, she is here and is ok, but she takes 15 meds a day to maintain her new normal and we are still working on our whole families new normal!  When you have a child or loved one who has cancer, your whole family has cancer!  With careful lifelong med management, and checks, if we stay in her TSH target level she has a 25% or less chance of return of cancer.  Every visit we get to say NED (No Evidence of Disease) is a celebration!

So, how did the whole family get thyroid disease?!  Well it was literally 4 months after my 12 yr old daughters cancer diagnosis and there we were again sports physical time and this time it was like Deja vu, the doctor was examining my youngest daughter and once again took “too long” feeling the thyroid and I asked is everything ok, and she looked at me and said I wish I could say it was, but she has an enlarged thyroid!  Then it started, lab first, and she was already very hypothyroid, so we were again referred to the closest university hospital and started our work up.  As we waited those anxious days to be seen, I contacted my sons doctor (he had a different one because he has tracheal stenosis and we stuck with his doctor regardless of out of network costs).  I explained the situation and I know his doctor well and he said it is really not the norm to have 2 siblings diagnosed like that so he did not think I was a “crazy mom” for asking if I could have my son tested just in case, despite his normal exam.  So, the initial testing, his TSH was normal, but his TPO Antibodies were Positive for Hashimotos Disease and my kiddos weren’t just a little positive like >900 positive with norms at <9! So, now the doctor said is it genetic we need to check parents-that was really hard for me, I thought well, I am healthy, but I was wrong.  I didn’t want to be wrong, part of me no matter how selfish it sounds, wanted it to be my husband, I didn’t want to be genetically responsible, but my husband tested stone cold normal for everything, no antibodies at all!  I tested positive and that is how in just less than 1 year we became the “Thyroid Family”.

So, months have past, we are literally BFF’s with the pharmacists here in town and the lab receptionists and techs at the hospital.  I would say we are at lab no less than every 2 wks, trying to manage care for all 3 kids.  My son’s TSH shot up highest off all kids actually less than a month ago, which signified his Hashimoto’s Disease was doing a great job killing his thyroid and now his thyroid could not function well enough on its own.  We doctor a lot, we cry a lot, we hug a lot, we love a lot, and we are in this together.  I read and read and read to get all information I can about everything thyroid!! I would be a liar to say I am not afraid, because I am indeed afraid of what the future could hold for my kids, but that is why I am trying so desperately to be the best advocate I can for them! I am trying to spread awareness so they don’t feel alone!  I am trying to educate anyone who will listen!  Thanks for taking time to read our story-if it could help you in any way, I am so happy.  We never imagined any of this in our future.  In a million years I would never have imagined my child could have cancer.  Those things all seem like statistics, but they are real, my kids are those exceptionally rare numbers!  Please if you take anything away from my article (other than tears, as I am now crying hard) please just always trust your gut, never miss a yearly check up, and hug your babies so tight tonight, because you never know what the future holds, love them everyday, even the difficult ones!

Crazy Happy Mom Life

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