In Honor of Invisible Illness Week: The Decision


This piece was originally an entry for an essay contest (which is why the wording may seem a bit….stilted.) Three of my children are diagnosed with Common Variable Immunodeficiency (CVID). IVIG is the acronym for Intravenous Immunoglobulin, which is a plasma by-product that provides my children with a sort of temporary immune system, with the antibodies their own systems fail to make. This infusion is a monthly event, and likely will remain a lifelong treatment.

My life turned around and improved when….
Shoot. I forgot to write down the exact date. But it was around March, 2006. I remember because it was the day we made The Decision. The Decision was something we had been hemming and hawing around for close to four years.
When I say “we”, I mean me, the Pediatric Pulmonologist, and the Pediatric Infectious Disease guy. The Decision was to – finally – begin IVIG for my children with CVID.

When our boys were sick and little – in infancy and toddlerhood – The Decision was brought up as the possibility of last resort. The final attempt once everything else had failed. But, don’t worry about it too much! We are positive these antibiotics will work! We are positive these steroids will be the key! You can handle 12 nebulizer treatments a day, can’t you? Of course you can! That’s what needs to be done to avoid The Decision. (And of course I did.) Okay, it’s not going quite as planned, but no worries. We are positive the answer lies in this teensy little major surgery for both boys. You can handle that, right? Great! Time went on. The boys grew….well, one boy grew. One boy was classified Failure to Thrive. We soldiered on. I quit my job to avoid putting the boys in daycare (snot-nosed toddlers, always a threat.) We stopped attending church (do you have any idea how many people come to church sick? Sneezing into their hands and then offering to shake?). Days passed in a haze of medication distribution (give this one before eating, and this one 20 minutes after eating, and this one 2 hours before the next meal, and this one three hours after the last dairy consumption of the day, and these two must be given exactly 10 hours apart, and this one dispensed only after 4 red birds land on a branch outside the kitchen window at precisely the same time a circus passes through town and the moon is full), nebulizer treatments that involved so many different vials of medication it seemed one had barely ended before the next was due, and nights spent barely sleeping, always on the alert for someone to cough. Vomit. Whimper from fever-induced aches and pains.

Culminating Event: after four years of living with the uncertainty that comes with raising two chronically ill little boys, one of my older, healthy children became sick. Really sick. Tests were run, biopsies taken, possible diagnoses tossed out; Cystic Fibrosis, asthma, reflux, a combination of the three, something altogether different. Finally: Common Variable Immunodeficiency. For the first time, what we politely referred to as “Transient Hypogammaglobulinemia of Childhood” in the boys’ charts was in question. Their older sister had the real deal, long past the type that is outgrown. What were the odds the boys actually were transient? Very slim. And there we had the reason to make The Decision. Medications, nebulizers, surgery and isolation were not fixing this problem.
So we reassessed. The reality that this was a genetic, lifelong problem was discussed. It would not go away with age. All other options exhausted, the day that had once seemed so very far away had come.
I knew in my gut we had to try. We made The Decision.
Their first infusion was early April, 2006. Our lives turned around and improved when we could attend church again without fear; when they could all go to school without missing weeks of time; when my children began to grow at a healthy rate; when our life settled into a new normal, one with fewer restrictions and more adventures. Our lives changed for the better with IVIG.


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