Well, the truth is, she still has Neutropenia

So, the truth is, Vera is not all better. Vera has autoimmune neutropenia which is a rare chronic blood disorder. If that sounds serious, that’s because it is serious. Am I glad that the prognosis indicates that she will likely outgrow it? Yes. Do I feel grateful that her condition is treatable and has been managed well for the past 4 months? 100%. Am I aware that in the big picture of medical conditions things could be a lot worse? I absolutely am. None of this negates that we are dealing with a serious and very anxiety provoking situation.

I’m going to be honest. I’ve built up a false confidence. Vera gets her injection of G-CSF (brand name: Neupogen) on Mondays, Wednesdays, and Fridays. Not to brag, but I’ve actually gotten pretty good at giving the shot in her upper thigh. It’s weird to have needles and a sharps box in my house and I’m never quite sure what to do with it when people come over. Should I hide it so people don’t feel uncomfortable? Do I just leave it because that’s where it goes? Do I seem like I’m looking for extra attention if I do leave it? I digress. My point was that aside from this thrice weekly reminder we have gone about our business and live comfortably in the “Land of Denial”. Once in a while I get side-swiped by an invitation to the pond (not advised because of the bacteria lurking in fresh water), or a friendly parent comrade from LM’s daycare asking if LMJ will be joining in the fall (she can’t, especially when winter rolls around, because we have to do everything we can to preserve her baseline health). But, for the most part, we carry on.

Well, there are a couple of neon signs in the “Land of Denial” that are really starting to bug me with their glare and constant buzz. I’m so used to them that they become part of the background but once in a while they catch my eye and attention. One says “She’s Been Exposed to Strep”. We had a play date with some wonderful friends on Thursday. Friday I get a text telling me that my friend’s little boy had come down with strep throat. Crap crap crap crap crap. I read everything there is to read about strep throat and know that if she is asymptomatic in 3 days she is most likely fine. On Saturday she woke up feeling warm. 99.2. Nothing, right? Not if your child is neutropenic. I can’t give her Tylenol because I can’t “mask” a fever. I can’t stop her from getting sick because I am not God. We took her temperature no less than 20 times that day. Necessary? No. It was anxiety. She has not gotten sick yet so 24 more hours and we are most likely in the clear. Fingers crossed. What happens if she does get sick? We have to go get her blood drawn and if her neutrophils are low (very likely) we have to give her two very painful shots of antibiotics on consecutive days. And then we hope that works.

Another neon sign declares “All Kids Get Sick. Your Kid Will Get Sick.” As parents we know that kids get sick. Kids seem to have one rough winter – either their first or second depending on their exposure to other kids. LM was constantly sick her second winter. Lots of coughing, low-grade fevers, puking, repeat. It was bad enough having a constantly sick kid. I am terrified for LMJ’s “bad winter”. I am dreading all the blood draws; I am concerned of her becoming resistant to antibiotics; I am worried that she will get an infection that she just can’t kick; I am desperate at the thought of another hospital stay with masks, IVs, poking, prodding, screaming, wriggling and tears all around. But, as the neon sign indicates, she will get sick and we will have to deal with it.

The neon sign that is grabbing most of my attention right now is in caps “YOU ARE LEAVING HOME FOR THE FIRST TIME.” Aside from the usual comforts associated with home ours has become the safest haven there is, both emotionally and physically. LMJ has been exposed to everything in our home and it is one of the few places she can roam free without too much worry. We are also .25 miles from her pediatrician and a 20 minute drive from Children’s Hospital – both home bases for us. While we haven’t visited either much in the last 3 weeks their proximity and familiarity helps to ease my anxiety. I know where to park; I know where the ER entrance is; I know which floor the lab is on; I know which right to take, which left to take, and many of the friendly faces that greet us. To leave home for 5 days I have to step way outside the comfort zone I’ve worked hard to create. It is worth it. We are headed to NJ to Coco and Pop-pop’s. What awaits us is love, help, attention, pool time, yummy food and did I mention love? It is also Dad-E’s 40th birthday so it will be a weekend filled with friends, family, and joyous reflection as we celebrate his 4 decades and our 14 years together. These are all good and valid reasons to leave home for the first time and my fingers are crossed for a successful first journey so that we can cross that “first” off of our neutropenic list.

In conclusion, I hate neutropenia. I am over it. Lesson learned: life is fragile; no one is untouchable. Unfortunately, it wasn’t about a lesson. It is what it is and we do what we can. Thanks for reading. Thanks for your support. Know that your kindness, well wishes, and gestures big and small buoy us above water where we are bobbing along in mostly comfort.

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6 thoughts on “Well, the truth is, she still has Neutropenia

  1. Loved this post. You did a great job explaining how even in long stretches of good health, that you can’t ever fully relax. Here’s wishing you a medically uneventful vacation.

  2. Wishing you a great trip filled with all those things you mentioned, congratulate yourself for providing all those things to your family everyday.

  3. LOVE the post. Thanks for sharing such real, personal thoughts….thoughts that sound way too familiar. 🙂 My son was diagnosed at 4 months of age. He is now 6 years old. I hope it helps to hear that it can get better. I hope you have a safe, healthy trip!

  4. Our son, aged 14, was diagonised 12 months ago with an added complication of thrombocytopenia. We understand what you are going through twice over! It pains us and also comforts us to know that we are not alone. We use a drug called neukine (same as neupogen, but cheaper) and try to limit the administration to once in 12-14 days (based on blood results at keeping his count above 1000 anc).
    We all pray that all those afflicted with this dreaded complcation will get over it.

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