Hindsight is 20/20

Ever since Mac was two-months old, we had a sense that something “wasn’t right.”  For example, it seems that from the very beginning, he was not much of an eater.  This kid honestly showed no active interest in being fed–he could take it or leave it and he would usually leave it.  The second thing we noticed were the enlarged lymph nodes on his neck.  At his three-month well-check, we were advised this was normal and it was very common in children to have enlarged lymph nodes when the body was trying to fight infection.  “What infection?” we would ask.  “Something viral,” we were often told. Take note, we listened to the doctor and even after researching on-line, everything we found seemed to support this idea.  Then, we noticed a rash on Mac’s groin.  We thought it was diaper rash–though, it really didn’t look like diaper rash.  Then we thought, “well, both our kids have eczema, it must be that…”  The rash never went away.  In fact, the rash never changed–it never got worse but then again, it never got better.  Then, there was the cough.  “Seasonal allergies?” (again, listening to the doctor) but the cough, unlike the seasons, never changed.  And…let’s not forget the night sweats.  Mac seemed to always have cold hands and feet but without fail, he would be sweating as we would put him down for the night or during our middle-of-the-night milk party.   Then there was the constipation.  That’s always fun.  Constipation so horrible it often led to midnight baths and more use of vaseline that I care to admit.  Undoubtedly, the most horrifying and puzzling thing were the tremors.  I wouldn’t describe them as seizures, they were more like the trembling you experience when having a fever but you are unable to get warm.  An episode of these tremors were accompanied by his lips turning blue one late afternoon.  Needless to say, my husband drove him to the hospital. It is this ER visit that is the catalyst for finally getting us on the road to a diagnosis.  After the ER visit, it is mandatory to follow-up with the pediatrician on base.  Luckily, Dr. I Don’t Know (sorry, but this is how we refer to him) was out of the office.  All I can say is, “thank God.”  This was late Friday afternoon and we were at Children’s UAB first thing Monday morning for an oncology consult.

Only now that we have a diagnosis does it seem so simple.  Sadly, these were the things we could see / hear.  We were not even thinking about what we could not see (i.e. soft tissue tumor on his temporal lobe).

According to Boston Children’s Hospital, common symptoms of LCH in children include  the following:

  • Skin rashes (Mac = Check)
  • weakness and Failure to Gain Weight (Mac = Check)
  • Fever / Night Sweats (Mac = Check)
  • Tenderness in bone area (Mac = Check–in hindsight, of course.  Something was growing in his skull!)

Other symptoms include, loose or lost teeth, swollen gums, multiple ear infections, eyelids swelling and other vision problems, excessive thirst and urination (http://www.childrenshospital.org/az/Site1101/mainpageS1101P1.html).

In hindsight, I (I cannot speak for my husband) feel bad for making comments like, “Mac is really enjoying being a baby.”  I made this and other similar comments in reference to him not sleeping through the night, being a picky eater, or even when he would be content until the moment he saw me, only to cry.   I know, I know, “don’t blame yourself.”  But I do.  I KNEW something was askew. Not only did my gut tell me something was not right but my son was telling me the same.  Lesson to be learned:  if you have a gut instinct, act on it.  Get a second opinion.  Or a third.  Or a fourth.  As parents of young children, we are their ONLY advocate.

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4 thoughts on “Hindsight is 20/20

  1. Bless you I know this is a hard road to walk but you are walking it beautifully. I love you all and pray daily for you.

  2. You can never blame yourself even though it is a natural mother reaction. I’ve found that most medical diagnosis only comes with time, accumulation of symptoms and persistence.
    You stayed with it and you are getting him the best medical care he can get.God gave Mac You to be his Mom and you’re doing a wonderful job!

  3. I had the same thoughts in the couple days leading up to Taylor’s nightmare with Guillen-Barre Syndrome. For two and a half days things just weren’t “quite right”, but after a doctor visit, and some legitimate excuses for strange behavior (such as no nap for two days), we also didn’t know what else to do. Then the morning came when she couldn’t stand up, and even then I thought she was just being a cranky two year old who didn’t get a good night of sleep and just wanted to be held. When I got a call a few hours later that she woke up from her morning nap and still was not standing, not many people could imagine the crazy thoughts running through your head as you head to meet her in the emergency room. You are right that our gut instinct is often the best indicator that something isn’t right. It’s a lesson I learned quite well, and I’m sure you have as well. Unfortunately, some things like Taylor’s GBS or Mac’s LCH are beyond our understanding. While hindsight is certainly 20/20, we can’t blame ourselves for things we could not know. Rest assured you have a massive network of people that are praying for you all daily. God is mighty and miraculous, and I am praying that Mac will be healed completely, and that you will all come through the other end of this stronger. ❤

  4. I’ve been thinking about this since you posted it. I think if you dwell on it, it could eat you alive. However, I also think that you are a great Mom and you are exactly perfect for Mac. It’s not like the waiting took years, it was a matter of months. Months are not much time at all. Thinking of it outside of the perspective of caring for a baby, because that’s one of the rare times people count by months, but most adults count by years. You didn’t even let him get to a year with this, it was only months. You were concerned, you asked questions, you were persistent, you asked other Mama friends, you didn’t just let this sit idly on a shelf. It wasn’t ignored or denied. You WERE proactive about it. And look, before he even hit that first year marker, SuperMac was already getting treatment for this rare and hard to diagnose disease. You are amazing. You did go with your gut and with the continual nudges by the Holy Spirit which I feel is where conviction is born. Hindsight rarely produces anything productive. I say dwell on the victory of finding this in a matter of months, of not stopping until someone took you seriously and doing everything in your physical strength and God given courage and direction to tackle this and pursue healing for him now. You are an amazing and strong Mom. I look up to you. I firmly believe that God handpicks our children for us. He knows exactly what they need and He gives them to us because we can do what is best for them. God gave you Mac. He trusts YOU and your hubby with Mac. Mac, who He understands, knows and loves deeper, higher and wider than anything we can imagine. He trusts Mac and all that He knew Mac would face with you. I think you are an amazing Mom and that you have to trust Him that even in this He is guiding you, every step of the way. “…even there Your hand will guide me, Your right hand will hold me fast.” Psalm 139:10 Love ya!

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