28 Days = Lifetime for Mom

When I grow up I want to be Samantha . . . seriously.

Samantha has fearlessly and eloquently explained her journey thus far in a way only she can accomplish. In her postings she enthusiastically describes her day-to-day life as a child battling the condition of growth hormone deficiency, and indeed it is a battle which she will win no matter her ultimate stature.  I hope her readers can feel her excitement, frustration, apprehension, anger, and even fear; all of which she experiences while using her wonderful sense humor to keep her going; and we all laugh with her.

Make no mistake, this is Samantha's journey; she chose it, not her father nor I.  Samantha is her own best advocate.  When faced with the decision to begin growth hormone treatment she unequivocally stated, "yes, I don't want to be a really short person, I want to be your height (5'7")."  I replied, "Samantha, your genetic make-up isn't such that you will be as tall as I am; however it is possible for you to be (significantly) taller than you would be if you do not take the medication." When presented with the statistics of what her height range could be both with and without taking growth hormones she emphatically informed myself, my husband/her father, and her doctors, "I am going to do it." 

After researching growth hormone therapy studies which have been conducted since 1985 and consulting with her physicians, I felt that the data and research showed the medication was safe for Samantha and that there were no well-documented long-term adverse side effects. There was no medical reason why she should not try it, therefore we decided as a family with Samantha having the most weighted vote. Although we explained to her that it was possible her insurance company would deny coverage, she refused to accept failure.  Samantha knew in her heart that she would take this medication, it would be effective, and the insurance provider would accept her application. Thus far she has been correct.

Our journey of growth hormone therapy did not begin 28 days ago, it began in late January 2015 when she was seen by her pediatrician for her "well child" visit.  We were informed at that time that Samantha grew in one year 3/4 of an inch instead of 2 1/2 inches or more, which was the "expected" amount for a child of her stature.  Samantha has always been on the petite side; however from age 10 to 11 the amount she should have grown in height was remarkably low.  In contrast, she was growing in every other way that a child of her age would, and this is common for those who suffer from growth hormone deficiency.  Her pediatrician, as a precaution, recommended that she have a bone-age x-ray along with several blood tests to rule out serious medical conditions and to check her growth hormone levels.  Her blood work showed that she did not have any major medical issues and that her thyroid was working properly; however, her growth hormone levels were in the very low range of "normal." Her bone age was that of a person one year younger than her chronological age and that did not account for the lack of growth in height.  As a result, she was referred to an endocrinologist for further testing.

In future postings I will share our experience of our first visit to the endocrinologist (who Samantha describes 'as slow as a turtle'), the subsequent blood testing she underwent, the MRI she endured to rule out any tumor on her pituitary gland (that is an entire blog in of itself), the seemingly endless bureaucratic maze of navigating insurance providers and pharmaceutical companies, and the follow-up visits and blood tests associated with traveling upon the road our family [Samantha, Steven (her father and my husband of 17 years), Spencer (her younger brother who is almost 8) and I] are taking. Our family is taking this journey together; and Samantha is unbelievably fortunate to have the love and support of her family and friends. Only time will tell where our path will take us.

I have used the phrase "seriously Samantha?!?!" to describe my daughter for as long as I can recall.  Samantha lives each day to the fullest, and does not want to waste one minute of it.  In the process she has found herself in positions where all I can do is shake my head and say "seriously Samantha?!?!" and I am confident that those of you who know her would agree.  In upcoming postings I will share more about Samantha's adventures and struggles, for I firmly believe that she is a gift and on this earth to teach both parents and children about how to be a strong, loving, selfless, caring, funny and genuine human being. She wears her heart on her sleeve, and in this society I applaud her for doing so.

Dear Samantha,
When you read this I hope you realize what an amazing person and role model you are to people of all ages.  You are "perfectly imperfect", no matter your size, and I would not want you to be anyone other than who you are today. I love you more than a bee loves a rose . . .

xoxo,
Mommy